Mom is greatly improved today. I am surprised, but I can only guess it is in the unobstructed flow of oxygen and replenishment her body's electrolytes. She was up before we came downstairs. She helped in getting dressed. She ate all of her breakfast.
We planned an outing to the second Assisted Living home I selected as a possible residence. I explained where we were going and was very direct that it would be a place for her to live. She seemed to understand. Gary and I drove her over there. We showed her the available room, made sure she had a chance to visit with another resident who also attends FRA two days a week, and watched her reaction.
I finally asked her if she would want to live there and she said she would. On the return home, she commented on the three bright lights on the hillside - which were sun reflecting on three separate houses on the hillside. She not only perceived the exact number but spoke of it clearly without hesitation or gaps in her sentence.
I don't know that she will move there. She probably would fit in. She may not get enough stimulation for it to be interesting, but I think it is a nicer situation than what she has now. By that I mean the living room, bedroom, and dining room all have windows with more interesting views than what she sees from her apartment.
I doubt she will remember anything about it tomorrow. And by the time she is to move - if in fact she does move there - she may not want to do it at all. But today was a good day.
I take what I can get.
Saturday, December 31, 2011
Friday, December 30, 2011
Difficulties in Determining Cause and Severity of Illness
We have had an ongoing issue - one for which I am not getting good resolution via my own efforts nor those of her physician.
Marilyn called this morning from Mom's apartment. Our first thought was that her stomach ache of the night before had been very real, leading to diarrhea. Her apparent diarrhea had been severe. Both of us began working on the clean up process. I took charge of getting her into the shower that Marilyn already had running while she took soiled objects out to the laundry area. I made sure Mom was in the shower before I removed her pull ups to keep the contamination as localized as possible.
You can't imagine how much work it was just to get her into the shower and have her understand she needed both feet in the shower. Then getting her to lift her feet one at a time required much coaxing before I could finally take the whole mess and put it in the waste basket. Marilyn was on hand to take it to the trash outside immediately.
Once I had her cleaned, which in itself took me a long time as feces was spread all over her, Marilyn dressed her. I took over the laundry and spot removal while Marilyn launched into serious cleaning of the bathroom. Then I made sure Mom had something to drink. Her hand shook as she drank the Vitamin Water I offered.
Having the first load of laundry going and Marilyn handling the other details, I called the advice nurse at TVC. Still working under the assumption that this was the beginning of vomiting and diarrhea that has been going around, I wanted to know the markers to determine if she needed to go to the ER - and while making that call, I also moved Mom to another physician, one that is not as busy as Dr. Tsigonis and hopefully more responsive. I took Mom into see Dr. Tsigonis recently because those at FRA commented regularly that her stools were noticeably loose. No remedy to this situation was suggested and I began to feel that Dr. Tsigonis was a bit more hands off than what I need right now.
So, having dealt with a situation that had been on my mind for awhile, I then waited for the advice nurse to answer. Bonnie was on duty today. She is so nice and good at what she does. She listens to me and gives me practical, doable advice. She asked if she had become incontinent. We told her that we saw small slips, but nothing like this before today. She asked if she was running a fever - dang if I hadn't forgot to bring down the thermometer. She asked if she'd been exposed to anyone ill. Yes. She asked if she was hungry - no. Was she willing to drink liquids. Yes. How long had this been going on? There'd been comments from FRA about loose stools earlier this week, then she wouldn't eat yesterday. Today was the first day where things were out of hand.
Finally, based on all those symptoms she told me to buy Pedialyte to replace electrolytes and to use an over the counter medication to reduce the symptoms of diarrhea. She stressed that Pedialyte was more effective than sports drinks which did supplement electrolytes, but not at the levels needed for dehydration resulting from diarrhea.
We pulled together what she suggested and administered them earlier today. She has not had another incident today, which raises the question of whether it is really diarrhea. It could be a symptom of something else; it could be the onset of incontinence - although she has not shown signs of this issue during the day. Maybe that is because those at FRA keep track of her and ensure she uses the toilet regularly.
It is possible that the Immodium worked quickly on a digestive system that had little residual food, but how would I know? She did ask for help to get to the bathroom today and has not had another incident. These are things I need to record to tell Mom's new physician when she has her initial visit. We are able to get her into see her 1/18 for a first contact visit and we can get her in to see her earlier if she becomes ill.
Dementia throws an extra level of uncertainty into any diagnosis. For mom, it always is a bit of this and that. How to determine what is going on and how much needs to be done to ensure her comfort and well-being challenges me constantly. Would an assisted living home care giver go to the lengths I do?
But I do know this .. being complacent about her cleanliness and how her digestive system is awry isn't cutting it for me.
Marilyn called this morning from Mom's apartment. Our first thought was that her stomach ache of the night before had been very real, leading to diarrhea. Her apparent diarrhea had been severe. Both of us began working on the clean up process. I took charge of getting her into the shower that Marilyn already had running while she took soiled objects out to the laundry area. I made sure Mom was in the shower before I removed her pull ups to keep the contamination as localized as possible.
You can't imagine how much work it was just to get her into the shower and have her understand she needed both feet in the shower. Then getting her to lift her feet one at a time required much coaxing before I could finally take the whole mess and put it in the waste basket. Marilyn was on hand to take it to the trash outside immediately.
Once I had her cleaned, which in itself took me a long time as feces was spread all over her, Marilyn dressed her. I took over the laundry and spot removal while Marilyn launched into serious cleaning of the bathroom. Then I made sure Mom had something to drink. Her hand shook as she drank the Vitamin Water I offered.
Having the first load of laundry going and Marilyn handling the other details, I called the advice nurse at TVC. Still working under the assumption that this was the beginning of vomiting and diarrhea that has been going around, I wanted to know the markers to determine if she needed to go to the ER - and while making that call, I also moved Mom to another physician, one that is not as busy as Dr. Tsigonis and hopefully more responsive. I took Mom into see Dr. Tsigonis recently because those at FRA commented regularly that her stools were noticeably loose. No remedy to this situation was suggested and I began to feel that Dr. Tsigonis was a bit more hands off than what I need right now.
So, having dealt with a situation that had been on my mind for awhile, I then waited for the advice nurse to answer. Bonnie was on duty today. She is so nice and good at what she does. She listens to me and gives me practical, doable advice. She asked if she had become incontinent. We told her that we saw small slips, but nothing like this before today. She asked if she was running a fever - dang if I hadn't forgot to bring down the thermometer. She asked if she'd been exposed to anyone ill. Yes. She asked if she was hungry - no. Was she willing to drink liquids. Yes. How long had this been going on? There'd been comments from FRA about loose stools earlier this week, then she wouldn't eat yesterday. Today was the first day where things were out of hand.
Finally, based on all those symptoms she told me to buy Pedialyte to replace electrolytes and to use an over the counter medication to reduce the symptoms of diarrhea. She stressed that Pedialyte was more effective than sports drinks which did supplement electrolytes, but not at the levels needed for dehydration resulting from diarrhea.
We pulled together what she suggested and administered them earlier today. She has not had another incident today, which raises the question of whether it is really diarrhea. It could be a symptom of something else; it could be the onset of incontinence - although she has not shown signs of this issue during the day. Maybe that is because those at FRA keep track of her and ensure she uses the toilet regularly.
It is possible that the Immodium worked quickly on a digestive system that had little residual food, but how would I know? She did ask for help to get to the bathroom today and has not had another incident. These are things I need to record to tell Mom's new physician when she has her initial visit. We are able to get her into see her 1/18 for a first contact visit and we can get her in to see her earlier if she becomes ill.
Dementia throws an extra level of uncertainty into any diagnosis. For mom, it always is a bit of this and that. How to determine what is going on and how much needs to be done to ensure her comfort and well-being challenges me constantly. Would an assisted living home care giver go to the lengths I do?
But I do know this .. being complacent about her cleanliness and how her digestive system is awry isn't cutting it for me.
Thursday, December 29, 2011
Expectations Shift
Today a service/delivery person from Apria, one of the oxygen equipment suppliers in town, came in to service Mom's oxygen concentrator. He was a grad from the University of Oregon, taking an MBA from UAF. He was thorough. He made sure the pressure ball was the right size - it had not been. He made sure she had new tubing - the cat had eaten through what we had and no oxygen was being delivered. He gave me no smoking/oxygen in use signs - two, one for inside the apartment and one to place near the oxygen storage area. He chastised me for having gasoline tanks near the oxygen tanks - for which I was grateful because I had wanted to move them out earlier; I put on my coat and carried them to the detached garage.
After he left, for one brief moment, I had a feeling of hope. Maybe this would help Mom regain some of her sensibilities; afterall, he did say she had not been receiving oxygen for some time because the ball size was wrong and had been that way since the last servicing. But that flame soon died. For the longest time at every improvement we made to her living situation, I would see it as possibly "the thing" that got Mom back on track so she could participate at FRA more, so she would be more conscious at home about what she was doing, so she would remember more things and enjoy more of her life. And in those days, improvements did seem to impact things for a little while.
But today, I simply let the thought drift out and float away, like a cartoon bubble that escaped the comic strip. Whatever improvement the servicing does for her, will be offset by something other aspect of her decline. I know that sounds depressing. Perhaps the lack of sunlight has affected my mood - it is still the depths of winter with little light, so it is possible I am more bleak in outlook than usual. But the fact is that I have seen adjustments to her situation over the last 6 months that have helped her comfort and energy level, but have not noticeably slowed the progression of her decline.
Marilyn called @ 5:00 tonight, having brought her back from FRA @ 4:30 as usual. She wasn't eating, Marilyn told me. She hadn't eaten her lunch either. She wouldn't cooperate in putting on her pajamas. She said she didn't feel well. She said her stomach hurt.
I went down and Mom was lying on her bed fully dressed. My being there seemed to help. We got her out of her clothes and into her pull ups and PJs. Marilyn was able to coax her into surrendering her teeth (after I reminded her that she needed to have them cleaned). I was actually thinking that if she was coming down with what I had starting Christmas day, she might start vomiting and I didn't want loose dentures as a possible source of choking.
Christmas Day, after everyone had left, I lost my dinner and probably what I'd eaten for sometime - whatever it was affected the entire intestinal tract. It has been occurring to many disparate people who live very different life styles, so I finally ruled out food poisoning. My belly didn't cramp like food poisoning. Mom's former care giver and one child also had it and her husband now does. But Gary and the rest of the family are just fine .. so I did take her comment about a stomach ache seriously.
After we got her in bed I asked how she felt. She said fine. Did her stomach hurt? No.
Now the extent of my every day hope is along more simple lines. I hope she does not start vomiting and have diarrhea like I did. I slept through most of two days and although now able to eat without issue, don't seem to want anything. We would most likely have to hospitalize her as we wouldn't be able to keep her hydrated - that challenges us under every day circumstances.
As she closed her eyes, I looked over at her. She was ashen - so frail. My greatest hope now is that we can continue to find ways to ensure her comfort and that her life remains peaceful through what remains.
After he left, for one brief moment, I had a feeling of hope. Maybe this would help Mom regain some of her sensibilities; afterall, he did say she had not been receiving oxygen for some time because the ball size was wrong and had been that way since the last servicing. But that flame soon died. For the longest time at every improvement we made to her living situation, I would see it as possibly "the thing" that got Mom back on track so she could participate at FRA more, so she would be more conscious at home about what she was doing, so she would remember more things and enjoy more of her life. And in those days, improvements did seem to impact things for a little while.
But today, I simply let the thought drift out and float away, like a cartoon bubble that escaped the comic strip. Whatever improvement the servicing does for her, will be offset by something other aspect of her decline. I know that sounds depressing. Perhaps the lack of sunlight has affected my mood - it is still the depths of winter with little light, so it is possible I am more bleak in outlook than usual. But the fact is that I have seen adjustments to her situation over the last 6 months that have helped her comfort and energy level, but have not noticeably slowed the progression of her decline.
Marilyn called @ 5:00 tonight, having brought her back from FRA @ 4:30 as usual. She wasn't eating, Marilyn told me. She hadn't eaten her lunch either. She wouldn't cooperate in putting on her pajamas. She said she didn't feel well. She said her stomach hurt.
I went down and Mom was lying on her bed fully dressed. My being there seemed to help. We got her out of her clothes and into her pull ups and PJs. Marilyn was able to coax her into surrendering her teeth (after I reminded her that she needed to have them cleaned). I was actually thinking that if she was coming down with what I had starting Christmas day, she might start vomiting and I didn't want loose dentures as a possible source of choking.
Christmas Day, after everyone had left, I lost my dinner and probably what I'd eaten for sometime - whatever it was affected the entire intestinal tract. It has been occurring to many disparate people who live very different life styles, so I finally ruled out food poisoning. My belly didn't cramp like food poisoning. Mom's former care giver and one child also had it and her husband now does. But Gary and the rest of the family are just fine .. so I did take her comment about a stomach ache seriously.
After we got her in bed I asked how she felt. She said fine. Did her stomach hurt? No.
Now the extent of my every day hope is along more simple lines. I hope she does not start vomiting and have diarrhea like I did. I slept through most of two days and although now able to eat without issue, don't seem to want anything. We would most likely have to hospitalize her as we wouldn't be able to keep her hydrated - that challenges us under every day circumstances.
As she closed her eyes, I looked over at her. She was ashen - so frail. My greatest hope now is that we can continue to find ways to ensure her comfort and that her life remains peaceful through what remains.
Monday, December 26, 2011
Willie slips out of reckoning
When we moved to Alaska in 2006 , Gary and Mom remained behind for nearly two months. Autumn in Colorado can be lovely, if it isn't too hot. On one of those lovely evenings, my husband and friends went to see Willie Nelson at Red Rocks natural amphitheater. Gary told Mom he may take her somewhere and kept her guessing. Then an extra ticket came through and he surprised her with a trip to see Willie!
Mom did the okie stomp, holding her oxygen tank, all night - much to the delight of the youngsters around her. She (and Gary) talked about that for years. He would give her CDs and she would play them on her little portable CD player that he bought her. When he provided music events for those at FRA and those at Pioneer Home, she would always get up and dance with the hugest grin on her face.
Then she forgot how to use the CD player and only listened when Gary set it up for her.
Yesterday he gave her a new Willie Nelson CD for Christmas. When he set the CD playing, he turned to her and asked who that was. She wrinkled her face, tried her best to remember. He stood there for the longest time with her trying to come up with the words he wanted to hear. I finally said it was okay if she didn't remember - it wasn't important. It hurt me to watch him wait and see her struggle to bring that memory back out.
She listened to the CD two times through until my son-in-law, Jamie, went down to watch TV with her while we waited for everyone to arrive for dinner and present opening. As we were finishing dinner, my son, Lorien, stepped out for another cigarette (when will he give that up this time?). When he came back she asked him who he was. He told her he was her grandson, Lorien. He took off his hat, but she still looked at him with suspicion. Then a few moments later, she talked to him as if she knew him, but this was the signal that she was tiring.
Teresa went down with me to help her get ready for bed. Teresa asked that she put on the new coat I gave her. She didn't want to, but Teresa cajoled and we tried out the fit. It goes almost to the top of her shoes and she loves the faux fur rough around the hood. It will work great. Then Teresa put her many decorative pins on her lapels while I got her cleaned up. We took out her teeth to let them soak and then put on her PJs. Every bit of it was an effort for her. She was so, so tired.
As I got her in bed I leaned over to look at her. She looked up at me with such love in her eyes. She said, "You are a good girl". I don't get that from her very often. I cried.
Thursday, December 22, 2011
What Am I Seeing?
Talking about the basics of providing care for elders in Alaska can be very dry and I apologize for those of you who are more interested in aspects of dementia and my experience with it. But having a template for following the stages of necessary care was out there for me, but I didn't understand how to get through the process easily and so, I will return to details of what I have learned periodically. But for now, I want to get back to what I am seeing in Mom - the actual subject of the blog.
First - a little review of Mom's condition since our visit to Hope Haven a few weeks ago: Mom rallied and was herself for a very short while after she finished her round of medication. I heard from those at FRA and her morning care giver, Pam, that she showed signs of her old self. She was jocular, upbeat and participated. When we visited Hope Haven, she was alert and cognizant of her surroundings.
Then those at FRA started commenting on her fatigue first, followed by Marilyn, her evening care giver. I began checking in periodically because I wanted to be sure she was not showing signs of another UTI. These can recur easily in elders, especially those with dementia who are not drinking sufficient water. Those at FRA commented on a daily basis that she seemed exceptionally tired and often very confused. Then Pam commented she was beginning to complain about her back hurting again and wondered if the UTI had returned.
Originally we thought we would be going out of town next week and that would be a good trial period for her staying at Hope Haven. Those plans went by the wayside due to finances. Since that coincided with Mom's symptoms, I started dragging my feet about going forward with moving into assisted living. Mom has not been showing sufficient awareness of her surroundings outside of home for me to think she would make the adjustment easily. If she were sick, exceptionally confused, or depressed, I felt certain her transition would be a failure and we would have to move her back into our apartment. I worried even more about the layout of the facility at Hope Haven. I worried about moving into a new home, only to move her back and the effect that would have on her.
And, as I confessed to Pastor Sandy at UCPC a few days ago, I worried that she would forget me if I were not there all time. I know that this can't be a consideration for her care and well-being. I know that, but I have looked out for her since 1999 as her dementia progressed. To possibly be letting go of our relationship is another heart break for me.
I consulted with Suzy, Mom's current care coordinator at FRA, about my concerns with Hope Haven; I described the only other Assisted Living Home that I visited that I thought was acceptable, Let Us Care. As we talked, it became more firmly cemented in my that if she were to go to an assisted living home, one like Let Us Care would probably be an easier adjustment. In that building, the room opened directly out into the common area so Mom could see all she needed, just like she does at home. But Marion was not taking any new patients for personal reasons.
Then too, when I weighed in my options for assisted living against Mom's current state, moving to assisted living became less matter of fact. So, in addition to requesting more hours for home care, I made another adjustment to her home care plan. I asked that the morning PCA not arrive before 9:00 am daily and not take her to FRA much before 11:00. My thinking was that it would reduce the number of hours she was at FRA and she would not tire as quickly.
Although a good plan for Mom, it had the sad result of Pam deciding to give up caring for Mom. After a year of service to Mom, forming attachments and helping me make many decisions regarding her care, she could not adjust her schedule for clients she'd had even longer to meet Mom's needs. We have had to move Marilyn into both the morning and evening position. But, I have achieved one thing that I do feel is critical for Mom. When I told Maria at FRA she would be arriving later in the day, she was enthusiastic about it being a good move for Mom, one that might make the difference for her.
Now, to the today's topic: what am I seeing in Mom? There are two possibilities. Either or both could be affecting her current physical condition. She may have a recurrence of a UTI. There was no definitive signs of blood nor was it cloudy (indicating infection). Her urine was a dark amber color, which could be due to blood or simply the fact that it is highly concentrated since getting Mom to drink liquids is an ongoing challenge. FRA is closed tomorrow, so Marilyn will take Mom to 1st Care for a follow up urinanalysis. We will know if she has had a recurrence with certainty and can address it. In the meantime, I need to buy fresh cranberry capsules. It is less difficult to get her to take a capsule than it is to have her drink enough liquid to ensure good urinary tract health.
So that covers one aspect of what could be affecting her. The other could be a natural progression in aging. I had my yearly physical yesterday and while there, I described Mom's behavior - the increased hours of sleep, her confusion and fatigue. She told me it was very, very common as a symptom of aging. There is nothing unusual about Mom's behavior in that regard. I told her that I had never been with a member of my family who had passed due to natural causes. She looked at me with a smile and said, "That is how they go. It is very pleasant really. They sleep more, eat less, drink less. At some point they don't want food or drink. It is not at all hard."
I acknowledged that it was probably unpredictable, but could this stage last a long time. She confirmed it could be. One of her patients was in a nursing home whom they thought would pass a year ago, so there is no way to predict the length of time this stage can last. But as it progresses, her ability, or even desire to go to FRA for socialization will decrease.
If my mom is only showing these signs due to illness and dehydration from a UTI, then she could rally again - enough for us to consider moving her into an assisted living home. On the other hand, if they are signs of her decline into her final rest, then, as Dr. Tsigonis confirmed my unspoken thought, it may be too late for that. We will use up every hour the State will allot as Marilyn increases the time she spends with Mom at home. She will cease to go to FRA at some point and either she will remain at home until her final breath, or we will move her into a nursing home for what time she has left.
If she is not able to transition to assisted living, I prefer the former - to die at home - if it is possible.
Last night, I was reading my book of daily prayer for December 21st. By happenstance, or not, the pastor providing the scripture reading and commentary wrote there were two moments in life that stood out as the most profound, where the import and mystery of life affected all those around. They are the moment of birth and the moment of death. I have been graced with experiencing the birth of my two children and the birth of one of my friend's son. For a person who is life-preserving in the extreme, it is uncharacteristic to think of the point of death as a moment of grace, but I am willing to trust those who have experienced that and open my heart to witnessing that grace in the future.
First - a little review of Mom's condition since our visit to Hope Haven a few weeks ago: Mom rallied and was herself for a very short while after she finished her round of medication. I heard from those at FRA and her morning care giver, Pam, that she showed signs of her old self. She was jocular, upbeat and participated. When we visited Hope Haven, she was alert and cognizant of her surroundings.
Then those at FRA started commenting on her fatigue first, followed by Marilyn, her evening care giver. I began checking in periodically because I wanted to be sure she was not showing signs of another UTI. These can recur easily in elders, especially those with dementia who are not drinking sufficient water. Those at FRA commented on a daily basis that she seemed exceptionally tired and often very confused. Then Pam commented she was beginning to complain about her back hurting again and wondered if the UTI had returned.
Originally we thought we would be going out of town next week and that would be a good trial period for her staying at Hope Haven. Those plans went by the wayside due to finances. Since that coincided with Mom's symptoms, I started dragging my feet about going forward with moving into assisted living. Mom has not been showing sufficient awareness of her surroundings outside of home for me to think she would make the adjustment easily. If she were sick, exceptionally confused, or depressed, I felt certain her transition would be a failure and we would have to move her back into our apartment. I worried even more about the layout of the facility at Hope Haven. I worried about moving into a new home, only to move her back and the effect that would have on her.
And, as I confessed to Pastor Sandy at UCPC a few days ago, I worried that she would forget me if I were not there all time. I know that this can't be a consideration for her care and well-being. I know that, but I have looked out for her since 1999 as her dementia progressed. To possibly be letting go of our relationship is another heart break for me.
I consulted with Suzy, Mom's current care coordinator at FRA, about my concerns with Hope Haven; I described the only other Assisted Living Home that I visited that I thought was acceptable, Let Us Care. As we talked, it became more firmly cemented in my that if she were to go to an assisted living home, one like Let Us Care would probably be an easier adjustment. In that building, the room opened directly out into the common area so Mom could see all she needed, just like she does at home. But Marion was not taking any new patients for personal reasons.
Then too, when I weighed in my options for assisted living against Mom's current state, moving to assisted living became less matter of fact. So, in addition to requesting more hours for home care, I made another adjustment to her home care plan. I asked that the morning PCA not arrive before 9:00 am daily and not take her to FRA much before 11:00. My thinking was that it would reduce the number of hours she was at FRA and she would not tire as quickly.
Although a good plan for Mom, it had the sad result of Pam deciding to give up caring for Mom. After a year of service to Mom, forming attachments and helping me make many decisions regarding her care, she could not adjust her schedule for clients she'd had even longer to meet Mom's needs. We have had to move Marilyn into both the morning and evening position. But, I have achieved one thing that I do feel is critical for Mom. When I told Maria at FRA she would be arriving later in the day, she was enthusiastic about it being a good move for Mom, one that might make the difference for her.
Now, to the today's topic: what am I seeing in Mom? There are two possibilities. Either or both could be affecting her current physical condition. She may have a recurrence of a UTI. There was no definitive signs of blood nor was it cloudy (indicating infection). Her urine was a dark amber color, which could be due to blood or simply the fact that it is highly concentrated since getting Mom to drink liquids is an ongoing challenge. FRA is closed tomorrow, so Marilyn will take Mom to 1st Care for a follow up urinanalysis. We will know if she has had a recurrence with certainty and can address it. In the meantime, I need to buy fresh cranberry capsules. It is less difficult to get her to take a capsule than it is to have her drink enough liquid to ensure good urinary tract health.
So that covers one aspect of what could be affecting her. The other could be a natural progression in aging. I had my yearly physical yesterday and while there, I described Mom's behavior - the increased hours of sleep, her confusion and fatigue. She told me it was very, very common as a symptom of aging. There is nothing unusual about Mom's behavior in that regard. I told her that I had never been with a member of my family who had passed due to natural causes. She looked at me with a smile and said, "That is how they go. It is very pleasant really. They sleep more, eat less, drink less. At some point they don't want food or drink. It is not at all hard."
I acknowledged that it was probably unpredictable, but could this stage last a long time. She confirmed it could be. One of her patients was in a nursing home whom they thought would pass a year ago, so there is no way to predict the length of time this stage can last. But as it progresses, her ability, or even desire to go to FRA for socialization will decrease.
If my mom is only showing these signs due to illness and dehydration from a UTI, then she could rally again - enough for us to consider moving her into an assisted living home. On the other hand, if they are signs of her decline into her final rest, then, as Dr. Tsigonis confirmed my unspoken thought, it may be too late for that. We will use up every hour the State will allot as Marilyn increases the time she spends with Mom at home. She will cease to go to FRA at some point and either she will remain at home until her final breath, or we will move her into a nursing home for what time she has left.
If she is not able to transition to assisted living, I prefer the former - to die at home - if it is possible.
Last night, I was reading my book of daily prayer for December 21st. By happenstance, or not, the pastor providing the scripture reading and commentary wrote there were two moments in life that stood out as the most profound, where the import and mystery of life affected all those around. They are the moment of birth and the moment of death. I have been graced with experiencing the birth of my two children and the birth of one of my friend's son. For a person who is life-preserving in the extreme, it is uncharacteristic to think of the point of death as a moment of grace, but I am willing to trust those who have experienced that and open my heart to witnessing that grace in the future.
Care for Low Income Elders in Alaska
First, let me say that the State of Alaska has provided many opportunities for my mother as a lower income elder. Overall, it has been done with relative ease. So, I am not criticizing what is in place for elders. What is daunting is negotiating a clear path through the information, or lack thereof, to find what can be done for a loved one in need.
Levels of Care in Assisting for Elders
As I mentioned in my previous post, the State of Alaska will only provide assistance to low income elders that meet a set of physical criteria. One program, Medicaid, covers the cost of medical care and will provide PCA services. The second program is the Medicaid Waiver Program and it covers the cost of medical care and either increased in-home and daily care services or assisted living support. Before those programs are required, Adult Day Care can fill the need well.
Adult Day Care - FRA provides adult day care and pro-rates the cost of care based on the elder's income. They care for elders in many stages of physical need. When my mother first started attending, she was in complete control of her physical condition, but not her mental acuity. The Day Care Center provided physical and mental stimulation in addition to ensuring her safety. It provides an environment where they won't wander and won't harm themselves attempting to cook or do other things that used to be easy for them.
Medicaid - Based on the advice of my mother's care coordinator at the time, we applied only for Medicaid at the onset. Her care coordinator was not sure she met all the criteria for Medicaid Waiver and once rejected by the program, you can not be assessed again for six months.
After her assessment, Mom was accepted into the Medicaid program and was provided with a plan of care. Her initial assessment provided Personal Care Attendant services for 20.5 hours per week. That is roughly three hours for 3 days and then 5.5 hours over the weekend since the PCA care can not exceed 3 hours/day. This worked for her simply because we used part of the funds we placed in trust to pay for her daily care at FRA. In this way, we ensured she was not at home alone without stimulation or support.
Medicaid Waiver - In late August we went through a second assessment to qualify her for the Medicaid Waiver Program. The income levels for this program are several hundred dollars higher and is based on the criteria I mentioned previously. Mom qualified due to her physical limitations regarding her need for oxygen, administration of medications, and personal hygiene. Financially, she qualified because her income is well below the criteria for this advanced stage of care.
If the senior continues to live at home, this program will pay Medicaid as before plus
What I Would Do Differently
If I had understood the criteria for admission into the Medicaid Waiver Program, I would have applied for that sooner. At the time we qualified Mom for Medicaid, she was already exhibiting the conditions which ultimately qualified her for the Medicaid Waiver Program. Had she been in that program earlier, she would have made the transition to an assisted living home while still able to adjust to the stage. We have recently become concerned that it is too late for that step. Yet her needs, physical condition, and mental frame of mind may be beyond the type of client that is best served at FRA. She may be falling into a between state where her needs are not well met under any circumstance.
Levels of Care in Assisting for Elders
As I mentioned in my previous post, the State of Alaska will only provide assistance to low income elders that meet a set of physical criteria. One program, Medicaid, covers the cost of medical care and will provide PCA services. The second program is the Medicaid Waiver Program and it covers the cost of medical care and either increased in-home and daily care services or assisted living support. Before those programs are required, Adult Day Care can fill the need well.
Adult Day Care - FRA provides adult day care and pro-rates the cost of care based on the elder's income. They care for elders in many stages of physical need. When my mother first started attending, she was in complete control of her physical condition, but not her mental acuity. The Day Care Center provided physical and mental stimulation in addition to ensuring her safety. It provides an environment where they won't wander and won't harm themselves attempting to cook or do other things that used to be easy for them.
Medicaid - Based on the advice of my mother's care coordinator at the time, we applied only for Medicaid at the onset. Her care coordinator was not sure she met all the criteria for Medicaid Waiver and once rejected by the program, you can not be assessed again for six months.
After her assessment, Mom was accepted into the Medicaid program and was provided with a plan of care. Her initial assessment provided Personal Care Attendant services for 20.5 hours per week. That is roughly three hours for 3 days and then 5.5 hours over the weekend since the PCA care can not exceed 3 hours/day. This worked for her simply because we used part of the funds we placed in trust to pay for her daily care at FRA. In this way, we ensured she was not at home alone without stimulation or support.
Medicaid Waiver - In late August we went through a second assessment to qualify her for the Medicaid Waiver Program. The income levels for this program are several hundred dollars higher and is based on the criteria I mentioned previously. Mom qualified due to her physical limitations regarding her need for oxygen, administration of medications, and personal hygiene. Financially, she qualified because her income is well below the criteria for this advanced stage of care.
If the senior continues to live at home, this program will pay Medicaid as before plus
- hourly care, such as FRA
- personal care attendant services
- respite care attendant services
- 14 days of daily respite where the elder can be housed temporarily in an assisted living home to provide relief for family.
What I Would Do Differently
If I had understood the criteria for admission into the Medicaid Waiver Program, I would have applied for that sooner. At the time we qualified Mom for Medicaid, she was already exhibiting the conditions which ultimately qualified her for the Medicaid Waiver Program. Had she been in that program earlier, she would have made the transition to an assisted living home while still able to adjust to the stage. We have recently become concerned that it is too late for that step. Yet her needs, physical condition, and mental frame of mind may be beyond the type of client that is best served at FRA. She may be falling into a between state where her needs are not well met under any circumstance.
Friday, December 16, 2011
The Realities of the State of Alaska's View on Dementia
As background, those of you who have read my blog regularly know that recently I have been talking through my experiences as I take steps toward placing mom into an assisted living home. One of the realities of that step is that you may have your elder in a home on a trial period and if it does not work out, they must go to a different facility or return home. To that end, I have not given up seeing what is the most I can get for in-home support for Mom.
For those of you who live elsewhere in the U.S. or Europe, it may come as a surprise to you that Senior Disability Services (SDS) in the State of Alaska, does not consider Dementia worthy of assessment when considering senior aid and services. I have spoken with several groups that serve seniors and they all say the same thing; they have advocated that a separate assessment tool be devised that targets senior with any of the several forms of dementia. The State had no response for some time, but has recently begun to look into it. However, things do not typically move fast up here ... well, what bureaucracy is fast moving, for that matter.
But, let me lay out what this means for the dementia patient vs. a person with physical handicaps.
When my mother was evaluated for services the focus was entirely on what she could manage physically. Some of the evaluation criteria are:
Of these my mother qualified for three, which was sufficient to receive aid from the State given her income. She qualified for those three by virtue of the fact that she would not remember to manage those aspects of life, but luckily it comes down to the same thing - in this case - as not being able to physically manage those things. She must have oxygen for the rest of her life, but is unable to turn the device on and off and frequently removes it. She is no longer capable of cleaning herself after using the toilet. She can not administer her few medications. We are lucky because she only has four medications, but she forgets them altogether now. At an earlier stage in her dementia, she took several osteoporosis capsules in one day - hence the need for someone else to ensure dosage is correct.
Now let's address the criteria which mom did not meet in her first assessment. Mom can still walk, although it is becoming increasingly difficult for her to support her self, lower herself into chairs and get herself out of chairs. It is harder for her to get in and out of bed and I will frequently find her asleep with her legs dangling over the bed because it hurts or is too hard for her to lift them onto the bed. But she can still move. She is capable of moving her body so she can get dressed and she can feed herself. She has recently qualified for a small increase in Personal Care Assistance due to the fact that she is showing more difficulty with mobility.
Now here is the fact - Mom would not dress herself if no one came in and got her clothes out and either helped her dress or verbally guided her in dressing. This is related to dementia, not to anything physical. My mother can feed herself, but she can not cook anything. She remembers that food was once in the freezer. She will take the food out and put it in the microwave. She will not turn on the microwave and she usually will forget it is there. Occasionally she has tried to eat it still frozen. This is not a physical problem, though. If the food is in front of her, she will eat - at least she usually will.
My mother does not respond to the telephone ringing with consistency any more. If the fire alarm went off, she would not know what to do. If the temperature dropped, she would not know how to keep herself warm or get help if there was no one else in the building. If we did not supply food and make sure someone sits with her, in many cases she would not eat. Without constant encouragement, she does not drink enough to stay hydrated, which affects her health and her mental acuity. And she is tiring. Being at FRA all day is wearing her out.
So while my mother still is physically well in most regards, she is largely unable to benefit from that physical well-being. She must be guided through her life and supported in her activities in order to still have any enrichment at all. Please tell me how this is not as serious as a person who can not get out of their wheel chair?
I will post more on this topic tomorrow. As I said, I am exploring all avenues since I will place my mother as a trial in an assisted living home soon, but I must be sure I can care for her at home if this choice is not workable for her or the facility.
For those of you who live elsewhere in the U.S. or Europe, it may come as a surprise to you that Senior Disability Services (SDS) in the State of Alaska, does not consider Dementia worthy of assessment when considering senior aid and services. I have spoken with several groups that serve seniors and they all say the same thing; they have advocated that a separate assessment tool be devised that targets senior with any of the several forms of dementia. The State had no response for some time, but has recently begun to look into it. However, things do not typically move fast up here ... well, what bureaucracy is fast moving, for that matter.
But, let me lay out what this means for the dementia patient vs. a person with physical handicaps.
When my mother was evaluated for services the focus was entirely on what she could manage physically. Some of the evaluation criteria are:
- Need for external medications or therapy that she can not self-administer
- Personal hygiene as a prevention to disease
- Capability of self-administering medications
- Transfers (i.e., mobility) between one location and another
- Capability of feeding herself
- Capability of dressing herself
Of these my mother qualified for three, which was sufficient to receive aid from the State given her income. She qualified for those three by virtue of the fact that she would not remember to manage those aspects of life, but luckily it comes down to the same thing - in this case - as not being able to physically manage those things. She must have oxygen for the rest of her life, but is unable to turn the device on and off and frequently removes it. She is no longer capable of cleaning herself after using the toilet. She can not administer her few medications. We are lucky because she only has four medications, but she forgets them altogether now. At an earlier stage in her dementia, she took several osteoporosis capsules in one day - hence the need for someone else to ensure dosage is correct.
Now let's address the criteria which mom did not meet in her first assessment. Mom can still walk, although it is becoming increasingly difficult for her to support her self, lower herself into chairs and get herself out of chairs. It is harder for her to get in and out of bed and I will frequently find her asleep with her legs dangling over the bed because it hurts or is too hard for her to lift them onto the bed. But she can still move. She is capable of moving her body so she can get dressed and she can feed herself. She has recently qualified for a small increase in Personal Care Assistance due to the fact that she is showing more difficulty with mobility.
Now here is the fact - Mom would not dress herself if no one came in and got her clothes out and either helped her dress or verbally guided her in dressing. This is related to dementia, not to anything physical. My mother can feed herself, but she can not cook anything. She remembers that food was once in the freezer. She will take the food out and put it in the microwave. She will not turn on the microwave and she usually will forget it is there. Occasionally she has tried to eat it still frozen. This is not a physical problem, though. If the food is in front of her, she will eat - at least she usually will.
My mother does not respond to the telephone ringing with consistency any more. If the fire alarm went off, she would not know what to do. If the temperature dropped, she would not know how to keep herself warm or get help if there was no one else in the building. If we did not supply food and make sure someone sits with her, in many cases she would not eat. Without constant encouragement, she does not drink enough to stay hydrated, which affects her health and her mental acuity. And she is tiring. Being at FRA all day is wearing her out.
So while my mother still is physically well in most regards, she is largely unable to benefit from that physical well-being. She must be guided through her life and supported in her activities in order to still have any enrichment at all. Please tell me how this is not as serious as a person who can not get out of their wheel chair?
I will post more on this topic tomorrow. As I said, I am exploring all avenues since I will place my mother as a trial in an assisted living home soon, but I must be sure I can care for her at home if this choice is not workable for her or the facility.
Monday, December 12, 2011
A Visit to Hope Haven
I had a nice surprise on Saturday. I received a call from Gladys at Hope Haven. Her schedule had cleared out enough for her to invite my mom and me for a visit. We did visit and overall, my experience was very positive and I enjoyed the visit.
Gladys recently bought the new facility and is still in the process of setting up Hope Haven for more residents. She needs to feel the staff is stable, complete and get responses to the required paperwork from the State of Alaska in order to have Medicaid Waiver residents, and add any features she thinks the facility needs, such as an automated stair chair. Although it is a 10 bed facility, she has been very firm about not taking more residents than what she feels she can serve well.
I met three of the four residents mentioned on Saturday. There were two rooms that could be used, one on the ground floor and one on the second floor. Mom would need to be on the first floor since there is no elevator or stair chair. We visited with the residents while Jo, the on-duty attendant fussed over us all and continually checked on those not in the common room. Gladys returned with supplies while we watched TV and Mom sipped tea. [As an aside, I noticed that both Jo and Sarah, another attendant, stressed that they made no executive decisions and all serious enquires needed to be directed to Gladys.] So, impressions ...
The facility was originally an FRA (Fairbanks Resource Agency) building and as such is very spacious. In that regard it is like night and day compared to the other licensed homes I visited. There are four separate living areas in the building, one of which is occupied by Gladys herself. On the bottom floor there are two apartments, one for women and one for men. To the back of the first floor is the common area and what might have served as the break room when it was run by FRA, but I can't say for sure. In the common room is an adequate kitchen, a nice dining table, several couches, a coffee table and the TV. The windows face south, but the curtains were pulled against the chill on the overcast day. Two residents that were sitting there when we arrived had blankets on their legs and walkers near at hand so they could move about if desired.
There is one resident of the man's apartment and I did not see him the entire time I was there. I was told that typically all residents take naps in the afternoon, but today was pedicure day and the ladies stayed up to participate in the activity. Jo had a nice array of colors and supplies for the event. Gladys plans many stimulating activities within the home for the residents and they are planning a dinner out and a limo ride for Christmas.
There are two common areas for each resident. The first floor woman's apartment had a large living area with a couch, chair, artificial plants, etageres and a dining table. I was told that the kitchen was not to be used. That made me laugh inwardly as it is certain my mother wouldn't be using it if she became a resident and most likely would never know it was there. It was back around a wall. Gladys keeps this as a quiet area for reading or resting, so there is no television in that room.
My impression of the apartment living room was that it was dark and although clean and modern, the hues and lighting made it seem drab. I think the lighting is not probably as bright as is needed for elders and the colors and hues are not as cheery as they could be. Those factors contributed to it not being as inviting as the common room at her former place on Senate Loop. In any case, the residents do not use it much. They tend to walk right through to the common area. We all tend to think of our living area as the region around where we eat and I think that, plus the lighting and TV may contribute to it being more attractive for the current residents.
I was shown the individual rooms and the bathroom for the woman's apartment. They are both very nice. The bedroom is big enough for a double bed, chair and dresser with a closet bigger than what Mom has now. The bathroom is very functional with a wonderful floor level shower, shower chair and a toilet with a raised seat. Oddly, this is the only residence where I smelled urine in the bathroom (odd because of how clean it was otherwise). I do understand how hard it is to keep an elder's bathroom perfectly sanitary at all times, and it made me think about how large the facility was and how challenging it would be to not only meet the needs of the residents, but keep it clean at all times. In order to expand to 10 beds, Gladys has her work cut out for her finding people who are as dedicated to elders and those needing assistance as she is.
When Gladys returned, we sat and visited and she concentrated on Mom. My mother's reactions to things could be based on whether she was willing to drink her tea or not. When we first got there, she was offered tea; she didn't want any. Then she got more relaxed and started looking around; we offered tea again and she did want it. When Gladys came and spoke to her; she didn't want any tea. She could not respond to many of Gladys' questions but did have some spirited comebacks, which are the delight of all of Mom's caregivers. Gladys asked her if she was ready to move to a home and my mother said, as you would expect, no. Gladys then acknowledged that was probably not a good question since who was ever ready? But, then she made it as clear as she possibly could to Mom that she would only live there if she wanted to be there. It had to be this way because it was hard on everyone if a resident wasn't' happy.
My mom was a little confused about the intent at first. She was able to finally explain what she meant by referring to the EXIT sign as what she would do if she came here. I realized she was thinking it was like FRA. But I told her it was a place to live, not just visit during the day. At this point Mom definitely was done with her tea and ready to go home.
Emotionally, I think it could be a good place for Mom. Physically, I wonder if it too large compared to her living and day situation now. The common room is farther away from the bedrooms than anything Mom now negotiates. Her range could increase with a walker, but I would have to trust that she would not become confused about where to go to be with others. The other thing I wondered about was the ability of the care taker to monitor Mom's toilet use. For example, yesterday morning, I found Mom's pull up in the trash completely soiled. Her PJ bottoms where rung out on the bed and she was sleeping in her bed without anything below her waist. An immediate shower was necessary as well as cleaning the sheets.
Then too, even though the other residents appeared to be suffering from dementia, it appeared to me that Mom was in a more dependent state. That may be because we are always marshaling her off to go to FRA and FRA is always providing the next activity; she rarely defines her own activities. She does so on the weekends, but her downstairs studio apartment is much smaller than Hope Haven and she can see all she needs from any vantage point.
So, those are the two concerns I have about her fitting in.
We are talking about having Mom stay there for a temporary visit when we take a short break. If Mom does go to Hope Haven, she would be there on trial basis for the first month or so. We will need to keep her apartment ready for her return in case it is not workable for her.
Gladys recently bought the new facility and is still in the process of setting up Hope Haven for more residents. She needs to feel the staff is stable, complete and get responses to the required paperwork from the State of Alaska in order to have Medicaid Waiver residents, and add any features she thinks the facility needs, such as an automated stair chair. Although it is a 10 bed facility, she has been very firm about not taking more residents than what she feels she can serve well.
I met three of the four residents mentioned on Saturday. There were two rooms that could be used, one on the ground floor and one on the second floor. Mom would need to be on the first floor since there is no elevator or stair chair. We visited with the residents while Jo, the on-duty attendant fussed over us all and continually checked on those not in the common room. Gladys returned with supplies while we watched TV and Mom sipped tea. [As an aside, I noticed that both Jo and Sarah, another attendant, stressed that they made no executive decisions and all serious enquires needed to be directed to Gladys.] So, impressions ...
The facility was originally an FRA (Fairbanks Resource Agency) building and as such is very spacious. In that regard it is like night and day compared to the other licensed homes I visited. There are four separate living areas in the building, one of which is occupied by Gladys herself. On the bottom floor there are two apartments, one for women and one for men. To the back of the first floor is the common area and what might have served as the break room when it was run by FRA, but I can't say for sure. In the common room is an adequate kitchen, a nice dining table, several couches, a coffee table and the TV. The windows face south, but the curtains were pulled against the chill on the overcast day. Two residents that were sitting there when we arrived had blankets on their legs and walkers near at hand so they could move about if desired.
There is one resident of the man's apartment and I did not see him the entire time I was there. I was told that typically all residents take naps in the afternoon, but today was pedicure day and the ladies stayed up to participate in the activity. Jo had a nice array of colors and supplies for the event. Gladys plans many stimulating activities within the home for the residents and they are planning a dinner out and a limo ride for Christmas.
There are two common areas for each resident. The first floor woman's apartment had a large living area with a couch, chair, artificial plants, etageres and a dining table. I was told that the kitchen was not to be used. That made me laugh inwardly as it is certain my mother wouldn't be using it if she became a resident and most likely would never know it was there. It was back around a wall. Gladys keeps this as a quiet area for reading or resting, so there is no television in that room.
My impression of the apartment living room was that it was dark and although clean and modern, the hues and lighting made it seem drab. I think the lighting is not probably as bright as is needed for elders and the colors and hues are not as cheery as they could be. Those factors contributed to it not being as inviting as the common room at her former place on Senate Loop. In any case, the residents do not use it much. They tend to walk right through to the common area. We all tend to think of our living area as the region around where we eat and I think that, plus the lighting and TV may contribute to it being more attractive for the current residents.
I was shown the individual rooms and the bathroom for the woman's apartment. They are both very nice. The bedroom is big enough for a double bed, chair and dresser with a closet bigger than what Mom has now. The bathroom is very functional with a wonderful floor level shower, shower chair and a toilet with a raised seat. Oddly, this is the only residence where I smelled urine in the bathroom (odd because of how clean it was otherwise). I do understand how hard it is to keep an elder's bathroom perfectly sanitary at all times, and it made me think about how large the facility was and how challenging it would be to not only meet the needs of the residents, but keep it clean at all times. In order to expand to 10 beds, Gladys has her work cut out for her finding people who are as dedicated to elders and those needing assistance as she is.
When Gladys returned, we sat and visited and she concentrated on Mom. My mother's reactions to things could be based on whether she was willing to drink her tea or not. When we first got there, she was offered tea; she didn't want any. Then she got more relaxed and started looking around; we offered tea again and she did want it. When Gladys came and spoke to her; she didn't want any tea. She could not respond to many of Gladys' questions but did have some spirited comebacks, which are the delight of all of Mom's caregivers. Gladys asked her if she was ready to move to a home and my mother said, as you would expect, no. Gladys then acknowledged that was probably not a good question since who was ever ready? But, then she made it as clear as she possibly could to Mom that she would only live there if she wanted to be there. It had to be this way because it was hard on everyone if a resident wasn't' happy.
My mom was a little confused about the intent at first. She was able to finally explain what she meant by referring to the EXIT sign as what she would do if she came here. I realized she was thinking it was like FRA. But I told her it was a place to live, not just visit during the day. At this point Mom definitely was done with her tea and ready to go home.
Emotionally, I think it could be a good place for Mom. Physically, I wonder if it too large compared to her living and day situation now. The common room is farther away from the bedrooms than anything Mom now negotiates. Her range could increase with a walker, but I would have to trust that she would not become confused about where to go to be with others. The other thing I wondered about was the ability of the care taker to monitor Mom's toilet use. For example, yesterday morning, I found Mom's pull up in the trash completely soiled. Her PJ bottoms where rung out on the bed and she was sleeping in her bed without anything below her waist. An immediate shower was necessary as well as cleaning the sheets.
Then too, even though the other residents appeared to be suffering from dementia, it appeared to me that Mom was in a more dependent state. That may be because we are always marshaling her off to go to FRA and FRA is always providing the next activity; she rarely defines her own activities. She does so on the weekends, but her downstairs studio apartment is much smaller than Hope Haven and she can see all she needs from any vantage point.
So, those are the two concerns I have about her fitting in.
We are talking about having Mom stay there for a temporary visit when we take a short break. If Mom does go to Hope Haven, she would be there on trial basis for the first month or so. We will need to keep her apartment ready for her return in case it is not workable for her.
Friday, December 9, 2011
Aging Versus Dementia
It came to me that some of what I see is simply aging and not dementia. Sometimes it is hard to make the distinction because my focus is the health of Mom's mental acuity. Sometimes what I am seeing is the effect of illness, such as her bout with UTI. Certainly illness is compounded by her mental state because she no longer monitors her own health, rarely taking action to provide nourishment for herself most of the time. So dementia influences the level of concern care givers have for their charges regarding illness and susceptibility to dehydration, UTI, and injury. But, it is not the only aspect that is affecting the elder.
My mother is wearing out. She started out perky this week. Her morning care giver and those at FRA (Fairbanks Resource Agency) commented that she was like her old self. She was jocular, social, and integrated into the activities of the Adult Center. Yesterday I checked in with the assisted living home care provider who is considering Mom, but has deferred taking another resident for awhile. I told her we were in a good period, so we were okay with continuing to wait. Yet, even as I was saying this, I found out later that she'd been very confused and listless all day. She would not eat more than her sandwich; she wouldn't participate in activities; she wouldn't drink any of the special drinks we send with her; she could barely walk without support. She put her coat on at 2 PM (14:00) and started saying "That lady will be here to get me soon."
Pam, her morning caregiver, and I thought it could be the change in routine was a contributor. Pam had an appointment with her daughter, so Marilyn, her afternoon care giver, arrived to ready her for FRA. Pam told me later that she had a few calls from Marilyn asking for advice as it was not going well with Mom. These symptoms are most likely related to the dementia. Anytime her routine is changed it creates drag on the pendulum swing as I mentioned in my previous post. We thought since she was used to seeing Marilyn when she is preparing for bed rather than preparing for the day, that she was confused as to what she should be doing. In the overriding dark of Fairbanks as it nears solstice, it is hard for anyone to know the time. For Mom, time has lost all relevance. Routine is her anchor as to what is next. And when Pam arrived this morning, she did get into her morning routine quickly and was ready to leave as expected. So, perhaps this explains the confusion of yesterday - or perhaps not.
There are physical aspects that are also influencing her demeanor and response to living. She usually supports herself while standing in her house, often using a dining chair back to lean upon. She will brace herself with walls, etc. She can move without these supports, but has a strong preference for it or holding on to one of us when walking. She sleeps soon after getting home in the evening. She is usually abed by 6:30 and does not rise until 9:00 or 10:00 the next day. She walks more hunched and her steps are slow. Her face looks worn and although she has shown signs of sun damage and smoking for many years, the wrinkles are deeper, the face more pale.
She is wearing down.
The stretches of good times are decreasing and the frequency of low-energy times are on the increase. I called Access Alaska, our care provider agency, and we arranged to meet for a new assessment next week. We will do that after Mom sees Dr. Tsigonis (a quarterly event now). I need a letter from Dr. Tsigonis documenting the changes in Mom which contribute to the need for more care hours. I want to be able to let Mom be home one day a week, preferably Wednesday. I also need support for when she is ill. She can not be left alone and we can not always be available to stay at home. Our work schedules can require us to be on site or she can take ill when we are out of town.
So that is the practical side of it all. The emotional side is I seem to have shifted into a state of waiting rather than day-to-day living. I am waiting to see which comes first, her need to be in a long-term care facility or her passing. Up until recently, I was assuming it would be the former of those two. Now I am not so sure. My mind and heart have shifted into a new awareness of her condition and it is not based in her dementia.
My heart is breaking.
My mother is wearing out. She started out perky this week. Her morning care giver and those at FRA (Fairbanks Resource Agency) commented that she was like her old self. She was jocular, social, and integrated into the activities of the Adult Center. Yesterday I checked in with the assisted living home care provider who is considering Mom, but has deferred taking another resident for awhile. I told her we were in a good period, so we were okay with continuing to wait. Yet, even as I was saying this, I found out later that she'd been very confused and listless all day. She would not eat more than her sandwich; she wouldn't participate in activities; she wouldn't drink any of the special drinks we send with her; she could barely walk without support. She put her coat on at 2 PM (14:00) and started saying "That lady will be here to get me soon."
Pam, her morning caregiver, and I thought it could be the change in routine was a contributor. Pam had an appointment with her daughter, so Marilyn, her afternoon care giver, arrived to ready her for FRA. Pam told me later that she had a few calls from Marilyn asking for advice as it was not going well with Mom. These symptoms are most likely related to the dementia. Anytime her routine is changed it creates drag on the pendulum swing as I mentioned in my previous post. We thought since she was used to seeing Marilyn when she is preparing for bed rather than preparing for the day, that she was confused as to what she should be doing. In the overriding dark of Fairbanks as it nears solstice, it is hard for anyone to know the time. For Mom, time has lost all relevance. Routine is her anchor as to what is next. And when Pam arrived this morning, she did get into her morning routine quickly and was ready to leave as expected. So, perhaps this explains the confusion of yesterday - or perhaps not.
There are physical aspects that are also influencing her demeanor and response to living. She usually supports herself while standing in her house, often using a dining chair back to lean upon. She will brace herself with walls, etc. She can move without these supports, but has a strong preference for it or holding on to one of us when walking. She sleeps soon after getting home in the evening. She is usually abed by 6:30 and does not rise until 9:00 or 10:00 the next day. She walks more hunched and her steps are slow. Her face looks worn and although she has shown signs of sun damage and smoking for many years, the wrinkles are deeper, the face more pale.
She is wearing down.
The stretches of good times are decreasing and the frequency of low-energy times are on the increase. I called Access Alaska, our care provider agency, and we arranged to meet for a new assessment next week. We will do that after Mom sees Dr. Tsigonis (a quarterly event now). I need a letter from Dr. Tsigonis documenting the changes in Mom which contribute to the need for more care hours. I want to be able to let Mom be home one day a week, preferably Wednesday. I also need support for when she is ill. She can not be left alone and we can not always be available to stay at home. Our work schedules can require us to be on site or she can take ill when we are out of town.
So that is the practical side of it all. The emotional side is I seem to have shifted into a state of waiting rather than day-to-day living. I am waiting to see which comes first, her need to be in a long-term care facility or her passing. Up until recently, I was assuming it would be the former of those two. Now I am not so sure. My mind and heart have shifted into a new awareness of her condition and it is not based in her dementia.
My heart is breaking.
Saturday, December 3, 2011
Pendulum
From Wikipedia ...
A pendulum clock is a clock that uses a pendulum, a swinging weight, as its timekeeping element. The advantage of a pendulum for timekeeping is that it is a resonant device; it swings back and forth in a precise time interval dependent on its length, and resists swinging at other rates. From its invention in 1656 by Christiaan Huygens until the 1930s, the pendulum clock was the world's most precise timekeeper, accounting for its widespread use.[1][2] Pendulum clocks must be stationary to operate; any motion or accelerations will affect the motion of the pendulum, causing inaccuracies, so other mechanisms must be used in portable timepieces. They are now kept mostly for their decorative and antique value.
One mechanism to control the pendulum is gravity. But in using the earth's gravity as the force controlling the clock's resonance, considerations for temperature, atmospheric drag from humidity, and leveling - keeping the clock absolutely stationary and level - must be accounted for.
Mom moves within a resonant range with respect to her dementia. Sometimes she remembers a detail, a name, a face, an instance, sometimes not. To be sure, the arc of her memory's pendulum, along with the arc of her ability to care for herself, is becoming more acute, i.e., narrow in its range. But, within that arc, there is predictability and a measure of peace.
The pendulum of Mom's existence is extremely delicate. The slightest change will cause the arc to vary widely and lose it resonance. Illness, changes in home life, events at FRA (Fairbanks Resource Agency), and the recognition of her decreasing abilities all impact the swing of her pendulum. Of these, illness is by far, has the longest impact on her stability. During times of illness, she is barely able to function. Then changes in her home environment cause emotional turmoil for short, but intense periods of time. She has been at tears when seeing workman outside that she does not know. Recognizing what she has lost causes depression.
At each decrease in the arc of the pendulum, I adjust. She is capable of far less than this time last year, dramatically less capable than when we moved to Alaska, and not recognizable as the same person who drove on her own, attended church, and cared for herself in Boulder ten years ago. Yet within this arc, I still see my mother. When her inner clock is stable and the pendulum's resonance even, she still greats me with a smile; her sentences are complete; she coos to her cat and eats well. She sits up and watches TV, comments on the day outside and simply lives.
I am grateful for these days.
A pendulum clock is a clock that uses a pendulum, a swinging weight, as its timekeeping element. The advantage of a pendulum for timekeeping is that it is a resonant device; it swings back and forth in a precise time interval dependent on its length, and resists swinging at other rates. From its invention in 1656 by Christiaan Huygens until the 1930s, the pendulum clock was the world's most precise timekeeper, accounting for its widespread use.[1][2] Pendulum clocks must be stationary to operate; any motion or accelerations will affect the motion of the pendulum, causing inaccuracies, so other mechanisms must be used in portable timepieces. They are now kept mostly for their decorative and antique value.
One mechanism to control the pendulum is gravity. But in using the earth's gravity as the force controlling the clock's resonance, considerations for temperature, atmospheric drag from humidity, and leveling - keeping the clock absolutely stationary and level - must be accounted for.
Mom moves within a resonant range with respect to her dementia. Sometimes she remembers a detail, a name, a face, an instance, sometimes not. To be sure, the arc of her memory's pendulum, along with the arc of her ability to care for herself, is becoming more acute, i.e., narrow in its range. But, within that arc, there is predictability and a measure of peace.
The pendulum of Mom's existence is extremely delicate. The slightest change will cause the arc to vary widely and lose it resonance. Illness, changes in home life, events at FRA (Fairbanks Resource Agency), and the recognition of her decreasing abilities all impact the swing of her pendulum. Of these, illness is by far, has the longest impact on her stability. During times of illness, she is barely able to function. Then changes in her home environment cause emotional turmoil for short, but intense periods of time. She has been at tears when seeing workman outside that she does not know. Recognizing what she has lost causes depression.
At each decrease in the arc of the pendulum, I adjust. She is capable of far less than this time last year, dramatically less capable than when we moved to Alaska, and not recognizable as the same person who drove on her own, attended church, and cared for herself in Boulder ten years ago. Yet within this arc, I still see my mother. When her inner clock is stable and the pendulum's resonance even, she still greats me with a smile; her sentences are complete; she coos to her cat and eats well. She sits up and watches TV, comments on the day outside and simply lives.
I am grateful for these days.
Thursday, December 1, 2011
Indelicate but Necessary
I hesitated to add this topic as it is not the type of thing I normally would broadcast for all and any to read, but since this is a log of my experience with my mother as she ages, it seems it is probably important to add - if for no other reason than it shows the importance of knowledgeable caregivers.
So, over the last month, before Mom became seriously ill with the UTI, she has not had diarrhea, but very loose stools. How do I know this? Well, she hasn't been flushing the toilet anymore, so when at home, I know by examination, but I also was informed by the caregivers at FRA. They wanted to be sure I knew since milk allergy was an issue for awhile.
An aside: FRA (Fairbanks Resource Agency) staff have not been giving her anything other than what I send once I said I would be responsible for her diet in order to eliminate milk products from her daily routine. Since then, we have had no issue with messy pants from milk related diarrhea. In fact, they wouldn't even give her the decaf coffee there. I didn't know this. I assumed (since it does not contain milk, right?) that they would still allow her that morning luxury. Some time last month I got a call from Maria asking me if it was okay to give Mom coffee. She'd been asking every day and finally took Maria aside to make the request. It is funny and heart breaking both - but my mom can still make her request known and ultimately that cheered me! Needless to say, she is now getting her morning coffee!
I asked if she had diarrhea or was it just loose. Loose was the answer, so I said we'd not worry about it yet. Then over the weekend I noticed she was sitting on the pot straining to have a BM. She'd slept so much, she'd gotten diarrhea. I wouldn't let her sit on the toilet long doing this because it can cause more harm than good and she was eliminating waste - just not as much as usual. Then Monday, her afternoon caregiver mentioned she thought she was constipated based on similar observations. I had sent juice to FRA to help get things flowing after the weekend, so I said I didn't want to give her a laxative until we had a chance to let it work through naturally.
The next day I get a call from Maria at FRA. She wanted me to know that Mom had been in the bathroom many times saying she needed to go to the bathroom, but nothing was happening. I told her I had been reluctant to give her a laxative until I was sure it was needed, but I had an excellent tea, a 4Life product, that would work. She needed to be forewarned that it works very well, though. She said fine. So that evening, I asked Marilyn to give her the tea with plenty of sugar. I noticed she'd had it all when I came down for my final check while she was in bed. Later I gave her a stool softener since I wanted to be sure this was not painful, once she was able to eliminate (defecate, poop, shit - supply your own favorite word to describe this necessary part of good health).
The next morning I get a call from Maria telling me that she is in the bathroom all the time and it must really be working. Then I get another call from Maria telling me it was a false alarm. She'd been in the toilet room for long periods of time without a BM. Unbeknownst to us, she had eliminated that morning - Mom's morning caregiver left a note - but in any case, she apparently still felt the urge. I called later to see if there had been any success so I would know if I needed to give her more tea. Maria was gone, but Sharon was available.
She went to consult the bathroom log! Yep, a bathroom log is kept for all of the patients. So that's how they know how she is doing in these vital areas! It was like listening to a police blotter:
10:30 - 11:15 Urination. Straining, but no result
12:30 No result
1:15 Small two inch, hard
2:30 No result
I certainly had the full picture of my mother's bathroom activities during the day at FRA. She managed to do this all on her own for a very long time. They told me longer than many and I can see now why resisting to the last possible time in her life would be important. Poor mom, but still, I am grateful because there can be no mistake about how her body functions are doing with regard to eliminating waste.
When we got home, Marilyn and Mom were already there. I brought down some tea, but as I walked in I detected the odor of human waste. I looked at Marilyn and she nodded her head. "She already went," she said, "and it was really a big one!" It was after that I found that Mom had already defecated once, but clearly, a lot of waste had accumulated. This morning called Maria and told her all was well, without ANY details, and let it go at that.
I had had enough of details on that subject for awhile.
So, over the last month, before Mom became seriously ill with the UTI, she has not had diarrhea, but very loose stools. How do I know this? Well, she hasn't been flushing the toilet anymore, so when at home, I know by examination, but I also was informed by the caregivers at FRA. They wanted to be sure I knew since milk allergy was an issue for awhile.
An aside: FRA (Fairbanks Resource Agency) staff have not been giving her anything other than what I send once I said I would be responsible for her diet in order to eliminate milk products from her daily routine. Since then, we have had no issue with messy pants from milk related diarrhea. In fact, they wouldn't even give her the decaf coffee there. I didn't know this. I assumed (since it does not contain milk, right?) that they would still allow her that morning luxury. Some time last month I got a call from Maria asking me if it was okay to give Mom coffee. She'd been asking every day and finally took Maria aside to make the request. It is funny and heart breaking both - but my mom can still make her request known and ultimately that cheered me! Needless to say, she is now getting her morning coffee!
I asked if she had diarrhea or was it just loose. Loose was the answer, so I said we'd not worry about it yet. Then over the weekend I noticed she was sitting on the pot straining to have a BM. She'd slept so much, she'd gotten diarrhea. I wouldn't let her sit on the toilet long doing this because it can cause more harm than good and she was eliminating waste - just not as much as usual. Then Monday, her afternoon caregiver mentioned she thought she was constipated based on similar observations. I had sent juice to FRA to help get things flowing after the weekend, so I said I didn't want to give her a laxative until we had a chance to let it work through naturally.
The next day I get a call from Maria at FRA. She wanted me to know that Mom had been in the bathroom many times saying she needed to go to the bathroom, but nothing was happening. I told her I had been reluctant to give her a laxative until I was sure it was needed, but I had an excellent tea, a 4Life product, that would work. She needed to be forewarned that it works very well, though. She said fine. So that evening, I asked Marilyn to give her the tea with plenty of sugar. I noticed she'd had it all when I came down for my final check while she was in bed. Later I gave her a stool softener since I wanted to be sure this was not painful, once she was able to eliminate (defecate, poop, shit - supply your own favorite word to describe this necessary part of good health).
The next morning I get a call from Maria telling me that she is in the bathroom all the time and it must really be working. Then I get another call from Maria telling me it was a false alarm. She'd been in the toilet room for long periods of time without a BM. Unbeknownst to us, she had eliminated that morning - Mom's morning caregiver left a note - but in any case, she apparently still felt the urge. I called later to see if there had been any success so I would know if I needed to give her more tea. Maria was gone, but Sharon was available.
She went to consult the bathroom log! Yep, a bathroom log is kept for all of the patients. So that's how they know how she is doing in these vital areas! It was like listening to a police blotter:
10:30 - 11:15 Urination. Straining, but no result
12:30 No result
1:15 Small two inch, hard
2:30 No result
I certainly had the full picture of my mother's bathroom activities during the day at FRA. She managed to do this all on her own for a very long time. They told me longer than many and I can see now why resisting to the last possible time in her life would be important. Poor mom, but still, I am grateful because there can be no mistake about how her body functions are doing with regard to eliminating waste.
When we got home, Marilyn and Mom were already there. I brought down some tea, but as I walked in I detected the odor of human waste. I looked at Marilyn and she nodded her head. "She already went," she said, "and it was really a big one!" It was after that I found that Mom had already defecated once, but clearly, a lot of waste had accumulated. This morning called Maria and told her all was well, without ANY details, and let it go at that.
I had had enough of details on that subject for awhile.
Tuesday, November 29, 2011
More Surprises and Some Mistakes
It appears that we may be able to place Mom in the home near the University. Marion is not taking another resident right now, though. For personal reasons, she is delaying adding another member to her household. I will check back later. She mentioned that when Mom did not want to get up, we should not force her, but make sure she gets food and liquids - which means full time nursing and not at all the approach I finally took.
So here is the surprise - she got up yesterday with no resistance and made it through the entire day. Although she again mentioned how tired she was, she did manage through the day all right and was fine when we brought her home. After her evening care giver, Marilyn, left, she was still up and about. I did not get her up this morning, but left her to Pam's care. I felt Pam should be able to reassume morning duties. Maria, at FRA (Fairbanks Resource Agency), said UTI really throws elders into a tail spin and they can have a long recovery time. So, sadly, it seems I misinterpreted her symptoms and that perhaps all Mom needed was more time at home resting.
At one point I suspected it could be physically related and called Denali Center to ask about short term care. I found that if she was not able to get up at all, or minimally, that she we could ask our family physician to place her in Denali Center short term care. But now that she is able to be up all day - with strong encouragement from me that first day - she obviously no longer qualifies for that support. However, I do need to keep that in mind for the future.
So, now I am in a bit of confusion. I am not willing to stay at home for her since I have critical deadlines that must be completed before the end of the year when certain features are dropped from a Google product I support. As a result, I put her into a situation where she could not comfortably heal. We allowed her to sleep for many days over the Thanksgiving break, but then I finally forced her to get up which Marion, a LPN, said shouldn't be done. Nevertheless, now that she is up, things are back to our usual routine.
Maria also mentioned that I needed to ask about activities. If she were in a home where all they did was watch TV, her dementia would progress. That is one thing I am not certain about with Let Us Care. It is a small facility, and like Mom, the women there appeared to be very private. All residents were in their rooms when I stopped by @ lunch time. One came out while I was there - perhaps for the stimulation of company, but I don't know because that was just one contact. Perhaps this is not always the case.
So, since Mom is once again able to go to FRA and my thoughts that her unwillingness to get up was based in depression and dementia do not appear to be correct, I am wondering if I should back away from placing her in a home and wait for Gladys Egger to have a spot for her after all. Maria mentioned that she liked the fact that Gladys wanted to plan activities for her residents.
Just when I think it is getting clearer, it gets murky again - and the fact is, right now there is no place for her to move to anyway, so it is a blessing that she is up and going to FRA.
So here is the surprise - she got up yesterday with no resistance and made it through the entire day. Although she again mentioned how tired she was, she did manage through the day all right and was fine when we brought her home. After her evening care giver, Marilyn, left, she was still up and about. I did not get her up this morning, but left her to Pam's care. I felt Pam should be able to reassume morning duties. Maria, at FRA (Fairbanks Resource Agency), said UTI really throws elders into a tail spin and they can have a long recovery time. So, sadly, it seems I misinterpreted her symptoms and that perhaps all Mom needed was more time at home resting.
At one point I suspected it could be physically related and called Denali Center to ask about short term care. I found that if she was not able to get up at all, or minimally, that she we could ask our family physician to place her in Denali Center short term care. But now that she is able to be up all day - with strong encouragement from me that first day - she obviously no longer qualifies for that support. However, I do need to keep that in mind for the future.
So, now I am in a bit of confusion. I am not willing to stay at home for her since I have critical deadlines that must be completed before the end of the year when certain features are dropped from a Google product I support. As a result, I put her into a situation where she could not comfortably heal. We allowed her to sleep for many days over the Thanksgiving break, but then I finally forced her to get up which Marion, a LPN, said shouldn't be done. Nevertheless, now that she is up, things are back to our usual routine.
Maria also mentioned that I needed to ask about activities. If she were in a home where all they did was watch TV, her dementia would progress. That is one thing I am not certain about with Let Us Care. It is a small facility, and like Mom, the women there appeared to be very private. All residents were in their rooms when I stopped by @ lunch time. One came out while I was there - perhaps for the stimulation of company, but I don't know because that was just one contact. Perhaps this is not always the case.
So, since Mom is once again able to go to FRA and my thoughts that her unwillingness to get up was based in depression and dementia do not appear to be correct, I am wondering if I should back away from placing her in a home and wait for Gladys Egger to have a spot for her after all. Maria mentioned that she liked the fact that Gladys wanted to plan activities for her residents.
Just when I think it is getting clearer, it gets murky again - and the fact is, right now there is no place for her to move to anyway, so it is a blessing that she is up and going to FRA.
Monday, November 28, 2011
Day by Day
Before I get too far into my thoughts regarding Mom, long-term care, and her current status, I want to thank the wonderful deacons at University Community Presbyterian Church for the great meals they put together for us. We have many, many days of meals which we heat up really quickly for Mom. They are nutritious and tasty and it has made one aspect of our life so much easier. I am very grateful for their service.
So, yesterday, I had to lift Mom out of bed. She got up at my request, went to the bathroom and then went right back to bed. I told her she needed to get up and she said, "No!" and started to cover herself up. I needed to forcibly pull her out of bed and move her into the bathroom for cleaning - with her resisting every step of the way. The emotional toll of this activity is high. I am forcing my mother to do something she is resisting. I am rough with her because I have to physically move her and it is not easy. Her resistance angers me, and oddly, when I finally voice my anger at her, she begins to comply. I wondered if this induces her sudden cooperation because she was raised in the era of corporal punishment and her reaction, from her youth, is to behave in the face of anger.
Or it might be that "resistance is futile".
I am as stubborn as she and ultimately stronger. She had not bathed or had sitz baths for over a day. I felt, considering how ill she became from her UTI, that I had no choice but to make her get up and get dressed in clean sweats. Oddly, once up and fed, she stayed up all day. No joke! She watched TV, ate regular meals, used the toilet, drank whatever we gave her and was a model patient. Perhaps the fact I was around a lot, as was Gary, helped, but honestly, I am not sure what caused the shift.
When I was telling my dad about my experience with her and commented on how I was surprised she stayed up, he said, "It's because you made her get up." I think this is what triggered my thoughts on what invokes obedience from her. Since I made her get up, she translated that into she had to be up all day. Well, it was better for her - she was able to stay up, but at one point, she told me she was so tired. I assumed that meant she was physically tired and would go to bed, but maybe it was tired in spirit, or maybe it was tired of how hard everything was. She did not go to bed after that statement, but stayed up and watched the Bronco/San Diego Football game, ate more meals, and drank more decaf coffee.
At some point, I went down after 7 pm and she was asleep.
This morning Gary went with me to get her up. Since Pam had so much trouble last week, I'd told her to not come this morning. My intention was if Mom needed to be hauled of bed, we would do it. I need her to be at FRA (Fairbanks Resource Agency) Adult Day Care and could not risk another call from Pam saying she could not get Mom up and she was hitting and kicking her. Gary got her up and once she was in the bathroom, he left to get dressed for work and I cleaned her and dressed her. I gave her some tea, but had not yet made her breakfast when, to my surprise, Pam arrived. Although I'd asked her to come, I am glad we got our wires crossed because since I had her up and dressed, I could leave Pam to vacuum, make the bed (I'd removed the linen), feed Mom, and take her to FRA. Gary and I were ready to go and wonders of wonders, I made it to work on time.
Dad asked me what would happen when she went to an Assisted Living Home. Would they make her get up like I do? I said they would, but I am not 100% sure of that. But what I have been told by those whose profession and experience is to care for elders at this stage in their lives, is that once in a social environment, the attitudes of the elder change. Where they had no reason to get up, now the social interaction motivates them to re-engage in living.
In any case, we have managed one more day. Taking it a day at a time is what is happening now.
So, yesterday, I had to lift Mom out of bed. She got up at my request, went to the bathroom and then went right back to bed. I told her she needed to get up and she said, "No!" and started to cover herself up. I needed to forcibly pull her out of bed and move her into the bathroom for cleaning - with her resisting every step of the way. The emotional toll of this activity is high. I am forcing my mother to do something she is resisting. I am rough with her because I have to physically move her and it is not easy. Her resistance angers me, and oddly, when I finally voice my anger at her, she begins to comply. I wondered if this induces her sudden cooperation because she was raised in the era of corporal punishment and her reaction, from her youth, is to behave in the face of anger.
Or it might be that "resistance is futile".
I am as stubborn as she and ultimately stronger. She had not bathed or had sitz baths for over a day. I felt, considering how ill she became from her UTI, that I had no choice but to make her get up and get dressed in clean sweats. Oddly, once up and fed, she stayed up all day. No joke! She watched TV, ate regular meals, used the toilet, drank whatever we gave her and was a model patient. Perhaps the fact I was around a lot, as was Gary, helped, but honestly, I am not sure what caused the shift.
When I was telling my dad about my experience with her and commented on how I was surprised she stayed up, he said, "It's because you made her get up." I think this is what triggered my thoughts on what invokes obedience from her. Since I made her get up, she translated that into she had to be up all day. Well, it was better for her - she was able to stay up, but at one point, she told me she was so tired. I assumed that meant she was physically tired and would go to bed, but maybe it was tired in spirit, or maybe it was tired of how hard everything was. She did not go to bed after that statement, but stayed up and watched the Bronco/San Diego Football game, ate more meals, and drank more decaf coffee.
At some point, I went down after 7 pm and she was asleep.
This morning Gary went with me to get her up. Since Pam had so much trouble last week, I'd told her to not come this morning. My intention was if Mom needed to be hauled of bed, we would do it. I need her to be at FRA (Fairbanks Resource Agency) Adult Day Care and could not risk another call from Pam saying she could not get Mom up and she was hitting and kicking her. Gary got her up and once she was in the bathroom, he left to get dressed for work and I cleaned her and dressed her. I gave her some tea, but had not yet made her breakfast when, to my surprise, Pam arrived. Although I'd asked her to come, I am glad we got our wires crossed because since I had her up and dressed, I could leave Pam to vacuum, make the bed (I'd removed the linen), feed Mom, and take her to FRA. Gary and I were ready to go and wonders of wonders, I made it to work on time.
Dad asked me what would happen when she went to an Assisted Living Home. Would they make her get up like I do? I said they would, but I am not 100% sure of that. But what I have been told by those whose profession and experience is to care for elders at this stage in their lives, is that once in a social environment, the attitudes of the elder change. Where they had no reason to get up, now the social interaction motivates them to re-engage in living.
In any case, we have managed one more day. Taking it a day at a time is what is happening now.
Saturday, November 26, 2011
The Unusual Choices for Assisted Living in Fairbanks
I have to choose my words carefully because I don't want to be sued for libel or slander. That is my first thought as I begin to write about my experiences in seeking a good spot for my mom.
When I first started considering this search, I visited Farmer's Loop Home run by Gladys Egger. At that time, she had a duplex, very spacious and south facing, on Senate Loop. The furnishings were spare, but comfortable, the light was excellent, and the kitchen clean and well laid out. The bedrooms were likewise clean, spacious and inviting. I do believe I expected other homes to be near this quality and to incorporate necessary features to care for elders and those needing assistance. But I have since found some surprising conditions in which elders live - especially those with lower incomes or who are fully state supported.
First, let me eliminate from the discussion the two state-run facilities - Pioneer Home and Denali Center. They both are well run and wonderful environments and both have waiting lists. Since Mom is a dementia patient, long term care at Denali Center is a reasonable alternative, but that waiting list is 10 people. Mom is at the top of the 3rd page for the Pioneer Home. She has not made progress in the last few months on that list. In fact, she has lost some ground as some have become active, claiming a spot in application date order, shifting her down a few places.
So, having spoken with both of the intake coordinators at those facilities, I turned to the list of state approved assisted living homes in Fairbanks. I did not include a home in North Pole, Lilley Lodge, that mom stayed at last year when we went south to be with Dad. It is a good home, but far away and we would not visit her as often as I would like. Ironically, I am clear it is a good facility now, having visited other homes. At the time, I was concerned by the small size of the bedrooms and the fact that Mom shared a room. The home itself was not especially large, but the living area was spacious, the dining room table and kitchen well-laid out, and the feeling was cozy and comfortable. The proprietor is an LPN, competent and knowledgeable.
Those that I could find to call were:
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Wednesday before Thanksgiving I visited Let Us Care on Sandvik, right near campus. I was already open to this location because it was close to campus. My daily walk at noon would become a walk to her residence for a 1/2 hour visit. From the street, it did not look like much, but once inside it easily was the nicest of the places I visited over the course of my exploration. As you came in off the garage there was a half flight going up and a half flight down. The kitchen was at the top of the stairs and Marion asked that I remove my shoes. Her floor and everything about the facility was spotless. The common room faced south and opened onto a lovely deck. It was nicely furnished and felt homey and inviting. She has five room and currently four residents. Each resident has their own room. The room was small, but lovely and enough room to bring in a book stand for some of my Mom's most precious things. A window faced north and the room opened onto the common area. There were two bathrooms, both clean, but Mom would have to step over the tub to get into the shower.
Marion asked me what type of person my mother was before offering me the opportunity to come by and take a look. As I looked at her facility, I could understand why. Each of the residents is more private and it is a quiet home - although having good relations with the rest of the residents would be important. Marion made it clear that she had 3 people ahead of me who were private pay and if they wanted the place, she would choose them as they paid more than state care. I mentioned Mom's income at one point and I got the impression she was surprised that we would be able to pay what we can. I think between what the state pays and what we pay, it should be a good income, probably more than what my husband makes a month.
This discussion left me feeling somewhat unsure. Would my mother be resented because she did not have private pay? The positives sides were the facility and the private room. Despite Marion's comments about state funded clients, she is actually a positive side to this as well. She said the only down-side to what she does is finding really good help - people who are honest and reliable. She likes to cook and obviously cares well for her clients. I felt Mom could fit in with the other residents.
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I visited Summer Shades on 6th Avenue (and all others discussed here) yesterday, Friday. It is downtown; the house is old, the bedrooms are small. The building is an older early Fairbanks framed, rambling with add-ons. Despite that, it appeared to be well-maintained. Windows were not thermopane in the bedroom wing and I doubt the house is well insulated, leaving one to gasp at the cost of heating it in order to keep in comfortable for elders. The staff are three LPNs that rotate through 12 hour schedules. They are licensed for 8 beds, all shared rooms. The facility is both men and women.
The kitchen and dining area were pleasant and there were two sitting rooms. One was off the dining room with two chairs and a TV and the other was larger with several comfortable chairs and another TV. Although not large, the common areas did not feel cramped or crowded. The dining room, although not as nice as that of Farmer's Loop Home, Let Us Care, or Lilley Lodge, was pleasant and large enough for all of the residents. The larger sitting room was abundantly furnished with darker walls and managed to appear more home-like than institutional.
The space available is a bedroom roughly 10' X 10' or less. There was enough space for a dresser and to walk between the beds, but not much beyond that. There was no place to put anything personal except some photos on the wall. (Suddenly the bedroom at Lilley Lodge was gigantic in my memory). I did not see space for her oxygen compressor. There was adequate space for clothes storage. The bathroom was practical for showering with no steps or tub.
The most positive aspect of this facility was the staff. I liked the woman I spoke with. She was knowledgeable, articulate, and very aware of her clients. The downside was its location (not convenient for us to stop by and visit), the age of the building and the size of the shared room. I am not sure Mom would fit in there.
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Even though they had just filled two spaces, I stopped by to visit Caring Bridges since it was on 7th Avenue and I was already in the area. The facility has two floors, laid out in the same way. It looked as though it had been built for the purpose it was used. The facility is newer and well maintained in the interior and exterior. Entering there was a choice of going upstairs or down. Those upstairs were more ambulatory and independent and could take care of their personal needs, despite walkers, etc. The rooms upstairs had bay windows. The bottom floor was for those needing more attention. I found a woman I met elsewhere was a resident there (I will call her Geraldine). Where my experience of her was that she was very quiet, I can tell you, her personality was very evident in her home. She does not speak in real sentences much of the time, but when she did, it was sharp and witty and full of fun. It was a very different view of her to be sure.
The layout, once you arrived on the floor was a common area to the right and a common area to the left. A central dining/cooking area on the opposite side of entry hall bridged those two areas. At either side of the common areas were bathrooms and bedrooms. Those who were private pay had modest, but adequate private rooms. Those who were not private pay shared a room. The facility has 16 beds with at least half of them shared rooms. The feeling I got as I went into the facility was pleasant mayhem, but that could have been a lot to do with Geraldine.
There were three round dining tables set up in the dining room and some of the residents were sitting there coffee cup in hand. It was a cheerful room and had an enviable kitchen. Others were in chairs watching TV. This common room, facing the kitchen/dining area felt narrow and closed to me with just three or 4 chairs in a row along the wall. The other common room, not used as much had two chairs and felt more spacious, although it probably wasn't. The hallway leading back to the majority of rooms was narrow; the shared rooms were larger than at Summer Shades, and probably as large as those at Lilley Lodge. The walls were painted a bright yellow downstairs. The facility was well-staffed.
A positive aspect of the facility was the social life. A down side could be the social life. I think Mom, who is very private could exhaust there. There was one woman napping at Summer Shades and the nurse told me she got nervous around so many people would go take a nap midday to get away from everyone. I could see Mom doing that. Another positive aspect was the staff. The woman I spoke with had been there long enough for her child, who is probably about 6, to have started out with her as a baby at the facility. Her daughter can come with her, another positive thing about it. Overall, it looks like a great facility, although cramped in the bedroom and common living areas.
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I visited Rocking Years II on Jefferson next. The woman on the telephone told me she thought my mother would fit in better at Rocking Years on Jack Street, but I went to see this one anyway because at the time I called, it had a private room. The house is huge. You wouldn't guess it from the street, but it 8 beds and as far as I can see, only one bedroom is shared.
As you walk in, you enter a foyer that is used as an office. Passing through that, there is a bathroom on the right hand side which is very well designed for those with special needs. The kitchen is to the right and the common area is straight in front of you edged by the fireplace brick. A stairwell to your left leads up to the second floor. The living area has several windows running all along the south side, yet the room itself is surprising dark. It is furnished with very comfortable looking couches and chairs.
The dining area is reached either through the kitchen or from the living area. It also is framed by several windows. The kitchen is also large, with cabinets painted red. She was making a snack for everyone and she had brightly colored cups out ready for them. I asked her about the darkness of the living room and she assured me it was not dark and that the residents liked it that way. If she turned on the light, they turned it off. She may have been referring to an overhead light. I did not think to check for lamps anywhere.
The private room had been taken in the intervening time, so I was shown the shared room. The room itself looked as though it had actually been a study off the main area. There was no closet and so Mom and the other resident would be hanging their clothes on portable racks. It was the largest shared room I have seen - very spacious as is the whole house. In any case, the private room would not have been appropriate for Mom as it was upstairs and only those residents who could negotiate stairs are housed on the second floor. There appeared to be only one caregiver on staff and the residents were not aged that noticed.
Did I say the place was dark? I headed over to Rocking Years, unsure Mom fit in with the residents.
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I have to say, after visiting Rocking Years II, I was in for a shock when I got to Rocking Years. The building was a small 3 bedroom, 1 3/4 bath ranch home. There was plastic on the windows; the exterior paint aging; the yard had the feeling of neglect. When I went in I was in a small foyer that broke the chill and then entered a common room with 3 chairs. The house could have 5 beds of which 4 were filled. The dining room was set up for only 4 people. Everything about the facility felt old, worn out, past its prime. The house smelled and the carpet and furnishing looked like they needed to be steam cleaned.
One room was private and the other two were shared. Two of the residents shared a room that was paneled with very dark plywood or fake paneling that appeared to be from the time the house was built. Another resident had a private messy room, and the room that was free was narrow. Larger than the one at Summer shades, but still very narrow. The paint also appeared to be from the original house color. The common area was only large enough for the three easy chairs, i.e, very, very small.
I mentioned that the other house was certainly big in comparison, and in passing mentioned the lights: I was told by this care giver that they kept the lights off to keep the electric bill down because it was so expensive. I then mentioned how small it was as I looked over the walls, windows, floor. My hostess said, yes, but everyone got along and then I could see she was taking my reaction to the facility personally somehow - which I did not intend.
My reaction was to get out as soon as possible. My second reaction was that the state was remiss in approving that facility. In my opinion, when compared to the quality of the other facilities - even in the old, old house downtown - it was sub-standard. My next reaction was and still is cold hot anger at the way people without a lot of money or foresight to get insurance are treated in this country ... probably anywhere. I honestly don't know the proprietors, their hearts, their goals or what kind of people they really are. But it is seem that keeping this house modern and up-to-date is not one of their goals.
Am I right in thinking that to be poor is worse than death in all cultures? It seems to me the poor are despised and dumped because they don't appear to deserve more ... and it crossed my mind that I didn't want my mother's income, modest though it is, to help pay for that very big house over on Jefferson.
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To summarize:
My mom lives in a very nice, if modest apartment on the basement floor of our house. For a studio, and for Fairbanks, it is spacious, comfortable, modern and clean. It is from that viewpoint I evaluate the places I visited. I don't have a negative feeling about Summer Shades, but don't think it is the facility for Mom. I will send my daughter by to see what she thinks.
Should something open at Caring Bridges, I would give it serious consideration despite the cramped and chaotic feeling. It is a good facility and my acquaintance is obviously really enjoying herself there.
I considered Rocking Years II until I saw Rocking Years on Jack Street.
I will definitely call Marion at Sandvik on Monday. It is my first choice although I want to ensure that she is truly comfortable in having a partially state supported resident in the home.
My mother was a great mother and worked hard after my parent's divorce. She supported herself and her husband for many years. She deserves - as do all people - a clean, comfortable home to spend her last years.
When I first started considering this search, I visited Farmer's Loop Home run by Gladys Egger. At that time, she had a duplex, very spacious and south facing, on Senate Loop. The furnishings were spare, but comfortable, the light was excellent, and the kitchen clean and well laid out. The bedrooms were likewise clean, spacious and inviting. I do believe I expected other homes to be near this quality and to incorporate necessary features to care for elders and those needing assistance. But I have since found some surprising conditions in which elders live - especially those with lower incomes or who are fully state supported.
First, let me eliminate from the discussion the two state-run facilities - Pioneer Home and Denali Center. They both are well run and wonderful environments and both have waiting lists. Since Mom is a dementia patient, long term care at Denali Center is a reasonable alternative, but that waiting list is 10 people. Mom is at the top of the 3rd page for the Pioneer Home. She has not made progress in the last few months on that list. In fact, she has lost some ground as some have become active, claiming a spot in application date order, shifting her down a few places.
So, having spoken with both of the intake coordinators at those facilities, I turned to the list of state approved assisted living homes in Fairbanks. I did not include a home in North Pole, Lilley Lodge, that mom stayed at last year when we went south to be with Dad. It is a good home, but far away and we would not visit her as often as I would like. Ironically, I am clear it is a good facility now, having visited other homes. At the time, I was concerned by the small size of the bedrooms and the fact that Mom shared a room. The home itself was not especially large, but the living area was spacious, the dining room table and kitchen well-laid out, and the feeling was cozy and comfortable. The proprietor is an LPN, competent and knowledgeable.
Those that I could find to call were:
- Caring Bridges
- Debbie's Assisted Living
- Downtown Care, Inc
- Evergreen Place
- Hope Haven (the new facility run by Glady Egger)
- Let Us Care
- Rocking Years
- Rocking Years II
- Wild Iris Comfort Care
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Wednesday before Thanksgiving I visited Let Us Care on Sandvik, right near campus. I was already open to this location because it was close to campus. My daily walk at noon would become a walk to her residence for a 1/2 hour visit. From the street, it did not look like much, but once inside it easily was the nicest of the places I visited over the course of my exploration. As you came in off the garage there was a half flight going up and a half flight down. The kitchen was at the top of the stairs and Marion asked that I remove my shoes. Her floor and everything about the facility was spotless. The common room faced south and opened onto a lovely deck. It was nicely furnished and felt homey and inviting. She has five room and currently four residents. Each resident has their own room. The room was small, but lovely and enough room to bring in a book stand for some of my Mom's most precious things. A window faced north and the room opened onto the common area. There were two bathrooms, both clean, but Mom would have to step over the tub to get into the shower.
Marion asked me what type of person my mother was before offering me the opportunity to come by and take a look. As I looked at her facility, I could understand why. Each of the residents is more private and it is a quiet home - although having good relations with the rest of the residents would be important. Marion made it clear that she had 3 people ahead of me who were private pay and if they wanted the place, she would choose them as they paid more than state care. I mentioned Mom's income at one point and I got the impression she was surprised that we would be able to pay what we can. I think between what the state pays and what we pay, it should be a good income, probably more than what my husband makes a month.
This discussion left me feeling somewhat unsure. Would my mother be resented because she did not have private pay? The positives sides were the facility and the private room. Despite Marion's comments about state funded clients, she is actually a positive side to this as well. She said the only down-side to what she does is finding really good help - people who are honest and reliable. She likes to cook and obviously cares well for her clients. I felt Mom could fit in with the other residents.
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I visited Summer Shades on 6th Avenue (and all others discussed here) yesterday, Friday. It is downtown; the house is old, the bedrooms are small. The building is an older early Fairbanks framed, rambling with add-ons. Despite that, it appeared to be well-maintained. Windows were not thermopane in the bedroom wing and I doubt the house is well insulated, leaving one to gasp at the cost of heating it in order to keep in comfortable for elders. The staff are three LPNs that rotate through 12 hour schedules. They are licensed for 8 beds, all shared rooms. The facility is both men and women.
The kitchen and dining area were pleasant and there were two sitting rooms. One was off the dining room with two chairs and a TV and the other was larger with several comfortable chairs and another TV. Although not large, the common areas did not feel cramped or crowded. The dining room, although not as nice as that of Farmer's Loop Home, Let Us Care, or Lilley Lodge, was pleasant and large enough for all of the residents. The larger sitting room was abundantly furnished with darker walls and managed to appear more home-like than institutional.
The space available is a bedroom roughly 10' X 10' or less. There was enough space for a dresser and to walk between the beds, but not much beyond that. There was no place to put anything personal except some photos on the wall. (Suddenly the bedroom at Lilley Lodge was gigantic in my memory). I did not see space for her oxygen compressor. There was adequate space for clothes storage. The bathroom was practical for showering with no steps or tub.
The most positive aspect of this facility was the staff. I liked the woman I spoke with. She was knowledgeable, articulate, and very aware of her clients. The downside was its location (not convenient for us to stop by and visit), the age of the building and the size of the shared room. I am not sure Mom would fit in there.
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Even though they had just filled two spaces, I stopped by to visit Caring Bridges since it was on 7th Avenue and I was already in the area. The facility has two floors, laid out in the same way. It looked as though it had been built for the purpose it was used. The facility is newer and well maintained in the interior and exterior. Entering there was a choice of going upstairs or down. Those upstairs were more ambulatory and independent and could take care of their personal needs, despite walkers, etc. The rooms upstairs had bay windows. The bottom floor was for those needing more attention. I found a woman I met elsewhere was a resident there (I will call her Geraldine). Where my experience of her was that she was very quiet, I can tell you, her personality was very evident in her home. She does not speak in real sentences much of the time, but when she did, it was sharp and witty and full of fun. It was a very different view of her to be sure.
The layout, once you arrived on the floor was a common area to the right and a common area to the left. A central dining/cooking area on the opposite side of entry hall bridged those two areas. At either side of the common areas were bathrooms and bedrooms. Those who were private pay had modest, but adequate private rooms. Those who were not private pay shared a room. The facility has 16 beds with at least half of them shared rooms. The feeling I got as I went into the facility was pleasant mayhem, but that could have been a lot to do with Geraldine.
There were three round dining tables set up in the dining room and some of the residents were sitting there coffee cup in hand. It was a cheerful room and had an enviable kitchen. Others were in chairs watching TV. This common room, facing the kitchen/dining area felt narrow and closed to me with just three or 4 chairs in a row along the wall. The other common room, not used as much had two chairs and felt more spacious, although it probably wasn't. The hallway leading back to the majority of rooms was narrow; the shared rooms were larger than at Summer Shades, and probably as large as those at Lilley Lodge. The walls were painted a bright yellow downstairs. The facility was well-staffed.
A positive aspect of the facility was the social life. A down side could be the social life. I think Mom, who is very private could exhaust there. There was one woman napping at Summer Shades and the nurse told me she got nervous around so many people would go take a nap midday to get away from everyone. I could see Mom doing that. Another positive aspect was the staff. The woman I spoke with had been there long enough for her child, who is probably about 6, to have started out with her as a baby at the facility. Her daughter can come with her, another positive thing about it. Overall, it looks like a great facility, although cramped in the bedroom and common living areas.
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I visited Rocking Years II on Jefferson next. The woman on the telephone told me she thought my mother would fit in better at Rocking Years on Jack Street, but I went to see this one anyway because at the time I called, it had a private room. The house is huge. You wouldn't guess it from the street, but it 8 beds and as far as I can see, only one bedroom is shared.
As you walk in, you enter a foyer that is used as an office. Passing through that, there is a bathroom on the right hand side which is very well designed for those with special needs. The kitchen is to the right and the common area is straight in front of you edged by the fireplace brick. A stairwell to your left leads up to the second floor. The living area has several windows running all along the south side, yet the room itself is surprising dark. It is furnished with very comfortable looking couches and chairs.
The dining area is reached either through the kitchen or from the living area. It also is framed by several windows. The kitchen is also large, with cabinets painted red. She was making a snack for everyone and she had brightly colored cups out ready for them. I asked her about the darkness of the living room and she assured me it was not dark and that the residents liked it that way. If she turned on the light, they turned it off. She may have been referring to an overhead light. I did not think to check for lamps anywhere.
The private room had been taken in the intervening time, so I was shown the shared room. The room itself looked as though it had actually been a study off the main area. There was no closet and so Mom and the other resident would be hanging their clothes on portable racks. It was the largest shared room I have seen - very spacious as is the whole house. In any case, the private room would not have been appropriate for Mom as it was upstairs and only those residents who could negotiate stairs are housed on the second floor. There appeared to be only one caregiver on staff and the residents were not aged that noticed.
Did I say the place was dark? I headed over to Rocking Years, unsure Mom fit in with the residents.
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I have to say, after visiting Rocking Years II, I was in for a shock when I got to Rocking Years. The building was a small 3 bedroom, 1 3/4 bath ranch home. There was plastic on the windows; the exterior paint aging; the yard had the feeling of neglect. When I went in I was in a small foyer that broke the chill and then entered a common room with 3 chairs. The house could have 5 beds of which 4 were filled. The dining room was set up for only 4 people. Everything about the facility felt old, worn out, past its prime. The house smelled and the carpet and furnishing looked like they needed to be steam cleaned.
One room was private and the other two were shared. Two of the residents shared a room that was paneled with very dark plywood or fake paneling that appeared to be from the time the house was built. Another resident had a private messy room, and the room that was free was narrow. Larger than the one at Summer shades, but still very narrow. The paint also appeared to be from the original house color. The common area was only large enough for the three easy chairs, i.e, very, very small.
I mentioned that the other house was certainly big in comparison, and in passing mentioned the lights: I was told by this care giver that they kept the lights off to keep the electric bill down because it was so expensive. I then mentioned how small it was as I looked over the walls, windows, floor. My hostess said, yes, but everyone got along and then I could see she was taking my reaction to the facility personally somehow - which I did not intend.
My reaction was to get out as soon as possible. My second reaction was that the state was remiss in approving that facility. In my opinion, when compared to the quality of the other facilities - even in the old, old house downtown - it was sub-standard. My next reaction was and still is cold hot anger at the way people without a lot of money or foresight to get insurance are treated in this country ... probably anywhere. I honestly don't know the proprietors, their hearts, their goals or what kind of people they really are. But it is seem that keeping this house modern and up-to-date is not one of their goals.
Am I right in thinking that to be poor is worse than death in all cultures? It seems to me the poor are despised and dumped because they don't appear to deserve more ... and it crossed my mind that I didn't want my mother's income, modest though it is, to help pay for that very big house over on Jefferson.
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To summarize:
My mom lives in a very nice, if modest apartment on the basement floor of our house. For a studio, and for Fairbanks, it is spacious, comfortable, modern and clean. It is from that viewpoint I evaluate the places I visited. I don't have a negative feeling about Summer Shades, but don't think it is the facility for Mom. I will send my daughter by to see what she thinks.
Should something open at Caring Bridges, I would give it serious consideration despite the cramped and chaotic feeling. It is a good facility and my acquaintance is obviously really enjoying herself there.
I considered Rocking Years II until I saw Rocking Years on Jack Street.
I will definitely call Marion at Sandvik on Monday. It is my first choice although I want to ensure that she is truly comfortable in having a partially state supported resident in the home.
My mother was a great mother and worked hard after my parent's divorce. She supported herself and her husband for many years. She deserves - as do all people - a clean, comfortable home to spend her last years.
Status Report
First - comments on Mom's current state.
When she went to FRA on Tuesday, the day I turned on the lights and Pam was able to get her dressed and on her way, I did not mention a significant event. When they arrived, a man was having a heart attack. They ushered every one to a separate room and although Mom did not speak of it, I do think it impacted her. I have not been able to get Mom up at a reasonable time either since that event. She is showing serious signs of depression and I wondered if it reminded her of Poppy's heart attacks. Poppy, as my daughter named him, was my Mom's husband and the love of her life.
It would have been very much in the recesses of her mind as she does not speak of him anymore, but her heart ached for his loss through her remaining cognitive years. Those memories are still there - even though she can't access them readily. That is the difference between Alzheimer's and something like vascular dementia. The cause is different and the physical characteristics of the brain are different.
I went down late in the day (like near noon) when it was fully light outside and sat and watched TV while I waited; she eventually got up and I noticed her standing, leaning on the table. And, yesterday she got up and I was able to bathe her, shampoo her hair and get her dressed before Teresa, Lorien, and Jamie came by. She had trouble remembering Lorien before they came, but eventually sorted it out. Then she had trouble remembering Jamie after they'd been gone for awhile. They stayed for about an hour and gave her left overs from Thanksgiving while I looked at Assisted Living homes. By the time I got back, about half an hour after they'd gone, she was already in bed (in her clothes).
I found her up and about at 10:00 pm, munching on a stale cracker or cookie she must have hid somewhere. I have no idea where she found it. I made her some soup and opened a can of Hansen's cola. I normally would hate the thought of all that sugar, but she is drinking something and at this point getting her to drink anything is a good thing. But we do need to buy more variety of healthier drinks. We used to give her Gatorade until she told the folks at FRA she was sick of that stuff. We hit upon the cola because she was so enthusiastic about her coke from Carl's Jr's. But she will tire of it soon.
She is supporting herself when she walks everywhere, and very gingerly lowers herself into her chair. I do think she is still in pain. I scheduled a follow on appointment where Dr. Tsigonis can see her first hand and we talk about maintenance control of UTI. But also we can explore what is actually the source of ongoing pain for her.
I am confused and conflicted by all of this. I feel she needs more care, but last night, when she was up on her own rooting around her house and cooing to her kitty, I wondered if moving her was the right decision. Perhaps she is depressed because of the closeness of death and seeing someone struggle in her safe haven at FRA. It is especially easy for me to back peddle after visiting assisted living homes in Fairbanks.
More on that next.
When she went to FRA on Tuesday, the day I turned on the lights and Pam was able to get her dressed and on her way, I did not mention a significant event. When they arrived, a man was having a heart attack. They ushered every one to a separate room and although Mom did not speak of it, I do think it impacted her. I have not been able to get Mom up at a reasonable time either since that event. She is showing serious signs of depression and I wondered if it reminded her of Poppy's heart attacks. Poppy, as my daughter named him, was my Mom's husband and the love of her life.
It would have been very much in the recesses of her mind as she does not speak of him anymore, but her heart ached for his loss through her remaining cognitive years. Those memories are still there - even though she can't access them readily. That is the difference between Alzheimer's and something like vascular dementia. The cause is different and the physical characteristics of the brain are different.
I went down late in the day (like near noon) when it was fully light outside and sat and watched TV while I waited; she eventually got up and I noticed her standing, leaning on the table. And, yesterday she got up and I was able to bathe her, shampoo her hair and get her dressed before Teresa, Lorien, and Jamie came by. She had trouble remembering Lorien before they came, but eventually sorted it out. Then she had trouble remembering Jamie after they'd been gone for awhile. They stayed for about an hour and gave her left overs from Thanksgiving while I looked at Assisted Living homes. By the time I got back, about half an hour after they'd gone, she was already in bed (in her clothes).
I found her up and about at 10:00 pm, munching on a stale cracker or cookie she must have hid somewhere. I have no idea where she found it. I made her some soup and opened a can of Hansen's cola. I normally would hate the thought of all that sugar, but she is drinking something and at this point getting her to drink anything is a good thing. But we do need to buy more variety of healthier drinks. We used to give her Gatorade until she told the folks at FRA she was sick of that stuff. We hit upon the cola because she was so enthusiastic about her coke from Carl's Jr's. But she will tire of it soon.
She is supporting herself when she walks everywhere, and very gingerly lowers herself into her chair. I do think she is still in pain. I scheduled a follow on appointment where Dr. Tsigonis can see her first hand and we talk about maintenance control of UTI. But also we can explore what is actually the source of ongoing pain for her.
I am confused and conflicted by all of this. I feel she needs more care, but last night, when she was up on her own rooting around her house and cooing to her kitty, I wondered if moving her was the right decision. Perhaps she is depressed because of the closeness of death and seeing someone struggle in her safe haven at FRA. It is especially easy for me to back peddle after visiting assisted living homes in Fairbanks.
More on that next.
Wednesday, November 23, 2011
Experiment Results
Well, apparently it worked. Yesterday Pam was able to get Mom up and out the door. I was rushed this morning because my husband had an appointment and forgot to turn on lights and the TV early. Again she would not get up for Pam and argued with me and said she would not get up.
Pam is staying there for a while with lights and TV blazing so her sleep is disrupted, but it looks as though Mom will be on her own for a while today. I can not leave work until noon, so I will drive home then, but this is a serious turn of events. It looks as though I need to place her in a facility immediately.
Pam is staying there for a while with lights and TV blazing so her sleep is disrupted, but it looks as though Mom will be on her own for a while today. I can not leave work until noon, so I will drive home then, but this is a serious turn of events. It looks as though I need to place her in a facility immediately.
Tuesday, November 22, 2011
Experimentation is the One Way to Deal
I am trying something this morning. I spoke with the social service worker at Pioneer's Home about chances of getting Mom in there and as we talked, she mentioned it could be the dark that is throwing Mom off. Well, it is now 8:44 a.m. and still dark outside, so there is something to that. Neither Gary nor I have been crazy about the adjustment to the mid winter dark, but Mom went into an advanced state of dementia within a year after moving here. Having lived at mid-latitudes for nearly 80 years, she is totally confused by the light/dark ratios in Fairbanks.
So am I, but that is an entirely different story.
So, I went down today and turned on two lamps and the TV. The idea was to signal morning in the way I do on weekends and holidays, but also to give her advance warning of the time. Her sleep is already disturbed, things are happening ... it's just an idea and since others before me have experimented with ways to help their elders along, I figure it is worth a shot.
I also asked her to be kind to Pam and let her get her dressed and in the process, unwound her oxygen tubing which had become tangled in her legs. I notice she is sleeping more stretched out, so the pain must be subsiding from the UTI.
I will let you know how it goes ...
So am I, but that is an entirely different story.
So, I went down today and turned on two lamps and the TV. The idea was to signal morning in the way I do on weekends and holidays, but also to give her advance warning of the time. Her sleep is already disturbed, things are happening ... it's just an idea and since others before me have experimented with ways to help their elders along, I figure it is worth a shot.
I also asked her to be kind to Pam and let her get her dressed and in the process, unwound her oxygen tubing which had become tangled in her legs. I notice she is sleeping more stretched out, so the pain must be subsiding from the UTI.
I will let you know how it goes ...
Monday, November 21, 2011
I Never Have Been a Roller Coaster Aficionado
I remember one scene from the movie, Parenthood, with Steve Martin and Mary Steenburgen. Martin's character is watching his children in a school play and nearly sick to his stomach with anxiety while his wife, Mary is watching the play in complete enjoyment, swaying easily with the ups and downs of the ride. I liken their respective responses to some carnival rides. If you tensed up, the experience is not pleasureful, but if you could enjoy the ride, ... well, you get the idea.
Today it crossed by mind that the only way one could possibly enjoy living with one suffering from dementia is to be at peace with the uncertainty and unpredictability of the situation and enjoy how life is continuing to unfold. I am not sure I can actually enjoy it, but if I see it as a roller coaster, with some smooth track, some scary sections, and some apex moments where you are sailing on top of the world - all happening in quick succession - it certainly feels better to me. Today's ride took an unexpected twist.
The last two mornings that Mom's morning care giver, Pam, has been with Mom, Friday and today, she has called me asking for help in getting Mom ready for FRA. Pam said Mom's reaction is a natural progression of the disease, but I am not 100% on board with that yet. For one thing, Pam has had some rough patches of her own lately; when I go through hard times, I find it hard to concentrate on the task at hand, so I haven't completely ruled out Mom is aware that she is more remote and trying to get her attention. Pam has engaged fully with Mom in the past, has been very competent and very helpful to me.
On Mom's side of the equation, there was a time when she was more cooperative with Pam than with me. When Alzheimer's progresses to a certain point, the person who is losing ground to the disease will turn on the family members - those closest to them. I don't know if the progression is the same for those patients suffering from dementia caused by other factors, but Mom is cooperating with me and now with her afternoon care giver. We have theorized that Pam has replaced me. She thinks of Pam as her family and me as an outsider, but I can't say that is what it feels like to me. I still call her Mom; she calls me "Hon". She still looks at me with recognition and understanding of who I am. I am still her authority figure.
So, the roller coaster dives down and takes a twist. I have relied on Pam to be able to keep us together for some time now. She has been with Mom nearly a year. I don't want to lose her because of how important she has become to me, but she can't possibly be getting much emotional satisfaction in fighting with Mom in the mornings. What do I do now? The phone calls settle her down; she cooperates (swearing all the way, but cooperating). She lets her get her dressed; she puts on her coat; she goes to Fairbanks Resource Center, FRA.
When we asked her care givers at FRA how she was today at the Adult Day Care Center, they said she was fine - as she always is. When we got out of the car, her afternoon care giver, Marilyn, was waiting for us. Mom said, "There she is," with real pleasure in her voice. She bossed Marilyn around a little, but essentially let her get her into her PJs, clean her, and help her around the apartment ... Amazing.
The roller coaster car sails back up to the top and evens out a bit before ... what next?
Today it crossed by mind that the only way one could possibly enjoy living with one suffering from dementia is to be at peace with the uncertainty and unpredictability of the situation and enjoy how life is continuing to unfold. I am not sure I can actually enjoy it, but if I see it as a roller coaster, with some smooth track, some scary sections, and some apex moments where you are sailing on top of the world - all happening in quick succession - it certainly feels better to me. Today's ride took an unexpected twist.
The last two mornings that Mom's morning care giver, Pam, has been with Mom, Friday and today, she has called me asking for help in getting Mom ready for FRA. Pam said Mom's reaction is a natural progression of the disease, but I am not 100% on board with that yet. For one thing, Pam has had some rough patches of her own lately; when I go through hard times, I find it hard to concentrate on the task at hand, so I haven't completely ruled out Mom is aware that she is more remote and trying to get her attention. Pam has engaged fully with Mom in the past, has been very competent and very helpful to me.
On Mom's side of the equation, there was a time when she was more cooperative with Pam than with me. When Alzheimer's progresses to a certain point, the person who is losing ground to the disease will turn on the family members - those closest to them. I don't know if the progression is the same for those patients suffering from dementia caused by other factors, but Mom is cooperating with me and now with her afternoon care giver. We have theorized that Pam has replaced me. She thinks of Pam as her family and me as an outsider, but I can't say that is what it feels like to me. I still call her Mom; she calls me "Hon". She still looks at me with recognition and understanding of who I am. I am still her authority figure.
So, the roller coaster dives down and takes a twist. I have relied on Pam to be able to keep us together for some time now. She has been with Mom nearly a year. I don't want to lose her because of how important she has become to me, but she can't possibly be getting much emotional satisfaction in fighting with Mom in the mornings. What do I do now? The phone calls settle her down; she cooperates (swearing all the way, but cooperating). She lets her get her dressed; she puts on her coat; she goes to Fairbanks Resource Center, FRA.
When we asked her care givers at FRA how she was today at the Adult Day Care Center, they said she was fine - as she always is. When we got out of the car, her afternoon care giver, Marilyn, was waiting for us. Mom said, "There she is," with real pleasure in her voice. She bossed Marilyn around a little, but essentially let her get her into her PJs, clean her, and help her around the apartment ... Amazing.
The roller coaster car sails back up to the top and evens out a bit before ... what next?
Friday, November 18, 2011
What is Inevitable in All of This?
Last time I spoke about my mother's fragility and dependency on me - my ability to diagnose what is happening to her in lieu of her being able to tell us. Today, I find I am focused on her current state of mind and body.
Each time she gets ill, for any reason, she loses considerable ground. She may rally in some regards; for example, her mental state is more responsive and aware of me than it has been. But her physical condition is markedly different. Once well, she will have a bit more stamina until the next bout with illness, but her overall ability to care for herself is diminished.
She has been losing ground steadily in terms of being able to get up, get out of bed, lift her legs to dress herself, and so on. She has trouble dropping her arms out of her sleeves and can't pull her tops off over her head. If she feels well enough, she will cooperate with the dressing and undressing process, but now it is like dressing a one to two year old. You tell them what part of his or her body to move to assist, but it is up to you to orchestrate that whole process. Her PCA said she did not help in any way this morning and Pam needed to do every bit of the dressing. Pam is a capable woman and managed, but I am thinking of a day when none of us can get her to move from bed.
Will it come to that? What is inevitable?
I have asked our children to come to her apartment for a replay of Thanksgiving. She can not climb stairs and there is no easy or, for that matter, practical way to get her up to my daughter's living area. The outside steps could be icy and the inside stairs have no railings and it is narrow and steep. So, we will have left overs here in her apartment. She can at least enjoy having her child, son-in-law and grandchildren here. We can pull out her little table to seat four of us and then set up the card table for two others. They both agreed, which is a blessing, because while I suppose nothing is inevitable, I feel this is likely to be her last Thanksgiving at home.
I know it must be hard for children whose parents live in retirement facilities, assisted living homes, or nursing homes, but I am not sure it is as hard as it is for those of us who keep our parents close and at home. We see them each day; our relationship with them is very strong and the emotion of losing them bit by bit can be overwhelming - and painful.
I do not understand life and death, growing and aging. It is a vast mystery why this planet works as it does.
Each time she gets ill, for any reason, she loses considerable ground. She may rally in some regards; for example, her mental state is more responsive and aware of me than it has been. But her physical condition is markedly different. Once well, she will have a bit more stamina until the next bout with illness, but her overall ability to care for herself is diminished.
She has been losing ground steadily in terms of being able to get up, get out of bed, lift her legs to dress herself, and so on. She has trouble dropping her arms out of her sleeves and can't pull her tops off over her head. If she feels well enough, she will cooperate with the dressing and undressing process, but now it is like dressing a one to two year old. You tell them what part of his or her body to move to assist, but it is up to you to orchestrate that whole process. Her PCA said she did not help in any way this morning and Pam needed to do every bit of the dressing. Pam is a capable woman and managed, but I am thinking of a day when none of us can get her to move from bed.
Will it come to that? What is inevitable?
I have asked our children to come to her apartment for a replay of Thanksgiving. She can not climb stairs and there is no easy or, for that matter, practical way to get her up to my daughter's living area. The outside steps could be icy and the inside stairs have no railings and it is narrow and steep. So, we will have left overs here in her apartment. She can at least enjoy having her child, son-in-law and grandchildren here. We can pull out her little table to seat four of us and then set up the card table for two others. They both agreed, which is a blessing, because while I suppose nothing is inevitable, I feel this is likely to be her last Thanksgiving at home.
I know it must be hard for children whose parents live in retirement facilities, assisted living homes, or nursing homes, but I am not sure it is as hard as it is for those of us who keep our parents close and at home. We see them each day; our relationship with them is very strong and the emotion of losing them bit by bit can be overwhelming - and painful.
I do not understand life and death, growing and aging. It is a vast mystery why this planet works as it does.
Monday, November 14, 2011
Am I repeating myself?
At the risk of repeating myself, I am looking at what has happened today much as my mother does - as if yesterday didn't happen. Normally I would be methodical, careful, thorough, and go back to see what had been discussed before. I'd want to know how she was that day and also how I was that day.
Today, I just want to talk about watching her slip from me. And actually, today wasn't like other days.
I hurt by back a little over a week ago. I was doing no more than shaking out a dog bed that I'd washed; I wanted to even out the padding that had bunched up from the dryer. I did no more than raise the pillow up and shake it, but as I shook it I swayed by back just so and once gain hit the point of weakness that started when my son was very young .. and worsened by falling flat on it while hiking across an icy patch with the same son several years ago. I didn't just sort of tweak it out this time, though. It was so painful that not knowing how serious it had become over night, I stood up out of bed and nearly passed out from the pain. I was nauseous and broke out in a cold sweat. I did not attempt to do any walking or standing again without support to pull myself up so absolutely no weight was placed on my spine of any sort.
The result - I was not able to care for my mother. Gary did that in the evening. Access Alaska and FRA(Fairbanks Resource Agency & Adult Day Care Center) came through with coordinating her respite care, so I was able to start a new person for evening care. We now have morning and evening care, but most of the information I was getting was from Pam, her morning PCA, and Gary. But I was not sure I was hearing of anything different.
"She is confused this morning" ... yes, much like she is every morning
"I find her curled up in the morning" .. yes, I have seen her change positions recently. She sleeps more with her head on the pillow near the wall so she doesn't have to schootch down into the covers. Is this different from that.
"She has a cough." ... yes, she does have a little one, but her nose is not running at all and there is no congestion or phlegm.
"She complains of her legs and back hurting" ... yep, we took her in for xrays due to her hip, but nothing was amiss. I wonder if something is worsening.
"She is not eating much for breakfast." ... hmm, I've noticed she is not eating much at night, but they say she is eating well at FRA.
Those were the reports during the week. Then on Friday, when Gary brought her home, he told me that the care givers at FRA said she was very weak and they had to help her get up. He told me that he could barely get her into bed. They mentioned a cough.
So he attempted to feed her. She didn't eat and finally was able to get to bed. She slept most of the next day. I told him that if she worsened, I would call the doctor on Monday. I don't know why I didn't want to take her 1st Care, our emergency care facility, over the weekend. I think it was because I didn't know what to tell them. I didn't really have much to go on except she was not well, but no real symptoms.
This morning, I again stayed home with my back. It is better - still painful, but I can move on my own and get out of bed without the support of the walker. Gary stayed home too. He worked two 8 hour days over the weekend and was beat. I got a call around 11:00 am. Maria was very worried about Mom. She appeared to be in pain, very tired and was complaining of lower back pain. She thought she may have at bladder or kidney infection.
That was what I needed to hear. I had something in my head that thought she could have a UTI recently. I don't know why. There has been no blood in her urine, nothing I could pinpoint, but something ... something. I told her that Gary was home and I was calling her doctor to get her into TVKC today. Then I called the clinic. I told them what I needed and, of course, heard nothing back. I told Gary to go get her and take her to 1st Care. Then I called in to see what had happened to my question and it had been referred to the on-call nurse. They wanted me to talk with her; I did and she agreed that taking her to 1st Care was the best choice now and she chastised me because I hadn't taken her temperature.
I thought, does it matter if she has a temperature or not? She is in great pain, weak, isn't eating, and sleeps all day. What in the world could that information provide ... and besides, her temperature is always below normal. I would have to tell them it was 98F, but that really meant a fever of 2 degrees. Thermometers are overrated in my opinion.
So, Gary gets her in and I waited for his call. I waited for his call. I waited. I waited some more. Finally I called him. They had blood tests and x-rays, but couldn't get a urine sample. He passed the phone to the doctor. Dr. Day mentioned she was dehydrated and this could be the a strong factor in her symptoms. I said she had Gatorade at FRA and they made sure she drank at least 20 ounces each day. "Ah," he said. "We can't get a urine sample. She is resistant to giving us one. Maybe she doesn't need to pee now. We could do a catheter, or you could do it at home." It sounded like he favored this approach, but I told him I could not be relied on to do it well since my back was still sore and I could not bend quickly. And, in the back of my mind, I was becoming reluctant to delay her treatment.
I asked to speak with her. I told her that we were trying to help her. I asked if she could pee. She said, essentially, that she wasn't going to go pee just because they wanted her to. Her natural stubborn nature was in full effect. I reminded her of how much she sick she has been feeling and how much pain she was in. I told her that they needed to see if she had an infection and needed medicine. Giving urine was easier than other ways. I did not get much response and gave them the go ahead to use a catheter. I cringed at the thought of the pain it would cause her. I was distressed, but I reasoned that if it were not a UTI, then we needed to eliminate it rather than treat it as if it were. We needed to find out why she was in so much pain.
Gary called me shortly thereafter to tell me she had complied with their request and she had a UTI. He heard them in the bathroom thanking her for peeing into the toilet pan. I think we were all enormously relieved that she cooperated with us rather than having to subject her to more pain. Previously, I'd already okayed them giving her fluids intravenously for her dehydration. I felt that as sick as she was, the chances of me getting her to drink at home were slim. They gave her an IV drip for over an hour.
I called her afternoon care giver to tell her she didn't need to come because we didn't know how long it would take to get medications, etc. Mom came home with a hamburger, fries and a coke she'd requested while at the clinic. This is not what she usually prefers, but Gary decided to run with it. She drank that coke like there was no tomorrow. In between long draws through the straw, she munched on french fries. I even got a few bites of hamburger into her before she'd had enough.
I gave her the first pill of seven - one each day because elder's livers process through the medication more slowly and it would be in her body for 24 hours. Although I'd told the doctor I could not bend, I managed to bend enough to get her into her PJs and into bed. It hurt for her to bend. It hurt for me to touch her legs. It hurt to straighten her out so she was not bent over once in bed. It hurt for me to bring the blankets up over her. But eventually I got her situated so she was comfortable. She watched me for a bit. She wasn't really sleepy enough to drop off immediately, but she was tired - very tired.
I am fortunate to have morning and evening help and I am fortunate to have a husband who will go the extra to help care for her. But I am the one who monitors her the most closely, me and those who see her every day at FRA. Not being able to care for her at the same time she was getting seriously ill made re-emphasized her dependency on me and her vulnerability. It is not the first time I have considered the possibility that she would get better care in a facility than here in her apartment. But it is the first time that I could see how clearly her lifeline is depending on my ability to watch over her - and me more than anyone else. When I wasn't able to focus on her, she wasn't cared for as quickly as she needed.
Would it be better in a home where a few people have several to watch? Maybe. If they are as caring, compassionate and knowledgeable as Maria (along with Wilma, Miriam, and Sharon) at FRA it could be.
Today, I just want to talk about watching her slip from me. And actually, today wasn't like other days.
I hurt by back a little over a week ago. I was doing no more than shaking out a dog bed that I'd washed; I wanted to even out the padding that had bunched up from the dryer. I did no more than raise the pillow up and shake it, but as I shook it I swayed by back just so and once gain hit the point of weakness that started when my son was very young .. and worsened by falling flat on it while hiking across an icy patch with the same son several years ago. I didn't just sort of tweak it out this time, though. It was so painful that not knowing how serious it had become over night, I stood up out of bed and nearly passed out from the pain. I was nauseous and broke out in a cold sweat. I did not attempt to do any walking or standing again without support to pull myself up so absolutely no weight was placed on my spine of any sort.
The result - I was not able to care for my mother. Gary did that in the evening. Access Alaska and FRA(Fairbanks Resource Agency & Adult Day Care Center) came through with coordinating her respite care, so I was able to start a new person for evening care. We now have morning and evening care, but most of the information I was getting was from Pam, her morning PCA, and Gary. But I was not sure I was hearing of anything different.
"She is confused this morning" ... yes, much like she is every morning
"I find her curled up in the morning" .. yes, I have seen her change positions recently. She sleeps more with her head on the pillow near the wall so she doesn't have to schootch down into the covers. Is this different from that.
"She has a cough." ... yes, she does have a little one, but her nose is not running at all and there is no congestion or phlegm.
"She complains of her legs and back hurting" ... yep, we took her in for xrays due to her hip, but nothing was amiss. I wonder if something is worsening.
"She is not eating much for breakfast." ... hmm, I've noticed she is not eating much at night, but they say she is eating well at FRA.
Those were the reports during the week. Then on Friday, when Gary brought her home, he told me that the care givers at FRA said she was very weak and they had to help her get up. He told me that he could barely get her into bed. They mentioned a cough.
So he attempted to feed her. She didn't eat and finally was able to get to bed. She slept most of the next day. I told him that if she worsened, I would call the doctor on Monday. I don't know why I didn't want to take her 1st Care, our emergency care facility, over the weekend. I think it was because I didn't know what to tell them. I didn't really have much to go on except she was not well, but no real symptoms.
This morning, I again stayed home with my back. It is better - still painful, but I can move on my own and get out of bed without the support of the walker. Gary stayed home too. He worked two 8 hour days over the weekend and was beat. I got a call around 11:00 am. Maria was very worried about Mom. She appeared to be in pain, very tired and was complaining of lower back pain. She thought she may have at bladder or kidney infection.
That was what I needed to hear. I had something in my head that thought she could have a UTI recently. I don't know why. There has been no blood in her urine, nothing I could pinpoint, but something ... something. I told her that Gary was home and I was calling her doctor to get her into TVKC today. Then I called the clinic. I told them what I needed and, of course, heard nothing back. I told Gary to go get her and take her to 1st Care. Then I called in to see what had happened to my question and it had been referred to the on-call nurse. They wanted me to talk with her; I did and she agreed that taking her to 1st Care was the best choice now and she chastised me because I hadn't taken her temperature.
I thought, does it matter if she has a temperature or not? She is in great pain, weak, isn't eating, and sleeps all day. What in the world could that information provide ... and besides, her temperature is always below normal. I would have to tell them it was 98F, but that really meant a fever of 2 degrees. Thermometers are overrated in my opinion.
So, Gary gets her in and I waited for his call. I waited for his call. I waited. I waited some more. Finally I called him. They had blood tests and x-rays, but couldn't get a urine sample. He passed the phone to the doctor. Dr. Day mentioned she was dehydrated and this could be the a strong factor in her symptoms. I said she had Gatorade at FRA and they made sure she drank at least 20 ounces each day. "Ah," he said. "We can't get a urine sample. She is resistant to giving us one. Maybe she doesn't need to pee now. We could do a catheter, or you could do it at home." It sounded like he favored this approach, but I told him I could not be relied on to do it well since my back was still sore and I could not bend quickly. And, in the back of my mind, I was becoming reluctant to delay her treatment.
I asked to speak with her. I told her that we were trying to help her. I asked if she could pee. She said, essentially, that she wasn't going to go pee just because they wanted her to. Her natural stubborn nature was in full effect. I reminded her of how much she sick she has been feeling and how much pain she was in. I told her that they needed to see if she had an infection and needed medicine. Giving urine was easier than other ways. I did not get much response and gave them the go ahead to use a catheter. I cringed at the thought of the pain it would cause her. I was distressed, but I reasoned that if it were not a UTI, then we needed to eliminate it rather than treat it as if it were. We needed to find out why she was in so much pain.
Gary called me shortly thereafter to tell me she had complied with their request and she had a UTI. He heard them in the bathroom thanking her for peeing into the toilet pan. I think we were all enormously relieved that she cooperated with us rather than having to subject her to more pain. Previously, I'd already okayed them giving her fluids intravenously for her dehydration. I felt that as sick as she was, the chances of me getting her to drink at home were slim. They gave her an IV drip for over an hour.
I called her afternoon care giver to tell her she didn't need to come because we didn't know how long it would take to get medications, etc. Mom came home with a hamburger, fries and a coke she'd requested while at the clinic. This is not what she usually prefers, but Gary decided to run with it. She drank that coke like there was no tomorrow. In between long draws through the straw, she munched on french fries. I even got a few bites of hamburger into her before she'd had enough.
I gave her the first pill of seven - one each day because elder's livers process through the medication more slowly and it would be in her body for 24 hours. Although I'd told the doctor I could not bend, I managed to bend enough to get her into her PJs and into bed. It hurt for her to bend. It hurt for me to touch her legs. It hurt to straighten her out so she was not bent over once in bed. It hurt for me to bring the blankets up over her. But eventually I got her situated so she was comfortable. She watched me for a bit. She wasn't really sleepy enough to drop off immediately, but she was tired - very tired.
I am fortunate to have morning and evening help and I am fortunate to have a husband who will go the extra to help care for her. But I am the one who monitors her the most closely, me and those who see her every day at FRA. Not being able to care for her at the same time she was getting seriously ill made re-emphasized her dependency on me and her vulnerability. It is not the first time I have considered the possibility that she would get better care in a facility than here in her apartment. But it is the first time that I could see how clearly her lifeline is depending on my ability to watch over her - and me more than anyone else. When I wasn't able to focus on her, she wasn't cared for as quickly as she needed.
Would it be better in a home where a few people have several to watch? Maybe. If they are as caring, compassionate and knowledgeable as Maria (along with Wilma, Miriam, and Sharon) at FRA it could be.
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