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.
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