We do have a temperature below which I won't send Mom to FRA, -30F. By that I mean that it may be colder than that early in the morning, but the highs aren't expected to be too much colder than -30F. Should anything happen, an accident, a flat tire, or anything that required Mom to be exposed to the cold for any length of time, it would easily become life threatening in a matter of minutes. Mom would not know what to do to protect herself.
An example of that is in her choice of gloves. She wore gloves she'd had forever for years here. They weren't warm enough. So for Christmas, Teresa bought her some wool gloves and then two sets of mittens. One pair of mittens are also wool, and would provide protection at slightly colder temperatures than what is safe for the wool gloves, and those two combined provide yet another level of protection. A second pair of mittens, when drawn over the wool gloves provide the maximum.
Mom refused to wear the mittens. There is no way she will accept that mittens are wamer than gloves. She doesn't like them.
We also bought her a new hat and a new coat. She loves the hat, but is having issues with the coat. It is long, its rated to -50F and a lovely shade of periwinkle blue. The coat reaches down below her boots, so she is not exposed to direct cold throughout her body.
Her coats were always beige with collars. She put her poodle pin and whatever else she favored on the labels of her other coats. This coat doesn't have a true lapel and she fussed and worried about it all weekend, finally putting it away in the closet because it made her unhappy. She is no longer bracing her thin little body against the cold when she walks outside to get in the car, but she doesn't truly notice that. I notice it, but in her mental state, it doesn't register she is safer and more comfortable.
Marilyn is ill today, so we picked her up. As I watched her come out with Gary I saw this petite, woman coming toward me. Her wool felted hat was secure upon her head. Her coat was fully zipped up and snapped all the way down. She had her wool gloves on. As she walked toward the car, I suddenly realized she really looked like an Alaskan elder should look - totally bundled up, moving carefully through pounds of down!
Wednesday, January 4, 2012
Monday, January 2, 2012
Anxiety
My mom and aunt both smoked like crazy. My aunt passed that anxiety to her children, two of whom died last fall, one due to lung cancer. My mother developed pneumonia which led to her state, vascular dementia, and emphysema. It's my observation that those smokers who maintain that relationship through thick and thin, despite all the warnings, despite all of the information and seeing those around them succumb to its effects, are those who have an anxious nature. Nicotine reduces the anxiety. It is a balm; so the addiction is much more than a straight forward drug addiction. It is an addiction to feeling okay about things.
When I asked my aunt about why she continued to smoke she told me that she opted to smoke over taking an anti-depressant because she didn't want to become addicted to a mind altering drug. Isn't that amazing? My son is the same way. They choose a drug that does alter their state of mind and greatly damages their health, but do so thinking it will impact their self-awareness less.
But the point I wanted to make is related to how Mom's anxiety affects her as she ages - being far more vulnerable than my aunt who does not have dementia. I mentioned in one of my posts that we had been giving Mom a simple anti-anxiety drug called, Ativan. She only requires 1 tablet, although I just read that it may be taken up to 3 times per day if needed. It is not long-lasting in its effects, but smoothes the edges. I also have been talking about Mom's improvement over the last few days which seem to be the result of improved oxygen flow and sufficient electrolytes.
A by-product of improved cognition is greater awareness and hence anxiety. I did not give her Ativan yesterday. I deliberately do not give her a dosage over the weekend. Gary told me he went down and Mom no longer showed signs of a stomach problem, but she was all worked up about feeling abandoned. He said it took a lot to get it out of her, but that is what he ultimately made out of the conversation.
So, the trip to the assisted living home did have an effect on her, and she experienced that from the perspective of one who has an anxious nature and is self-aware enough to feel vulnerable. She feels she can not chart her own destiny. I went down later, but did not open the conversation to any topic about her state of mind or emotions. I asked what she needed for food and continued on as normal without any change in my demeanor. At this juncture, it will be very important for me to be even in my interactions with her so there is nothing in my manner that catalyzes increased anxiety.
An interesting event occurred later in the day. As she was getting ready for bed, I told her that Marilyn would be in to take care of her in the morning. She asked "Who?" which didn't surprise me. She'd done the same with Pam. But this time, when I said she came into help in the mornings, she brightened up and obviously remembered her.
Every day I feel grateful for the Apria delivery man who decided to take his MBA here - of all the unexpected places.
When I asked my aunt about why she continued to smoke she told me that she opted to smoke over taking an anti-depressant because she didn't want to become addicted to a mind altering drug. Isn't that amazing? My son is the same way. They choose a drug that does alter their state of mind and greatly damages their health, but do so thinking it will impact their self-awareness less.
But the point I wanted to make is related to how Mom's anxiety affects her as she ages - being far more vulnerable than my aunt who does not have dementia. I mentioned in one of my posts that we had been giving Mom a simple anti-anxiety drug called, Ativan. She only requires 1 tablet, although I just read that it may be taken up to 3 times per day if needed. It is not long-lasting in its effects, but smoothes the edges. I also have been talking about Mom's improvement over the last few days which seem to be the result of improved oxygen flow and sufficient electrolytes.
A by-product of improved cognition is greater awareness and hence anxiety. I did not give her Ativan yesterday. I deliberately do not give her a dosage over the weekend. Gary told me he went down and Mom no longer showed signs of a stomach problem, but she was all worked up about feeling abandoned. He said it took a lot to get it out of her, but that is what he ultimately made out of the conversation.
So, the trip to the assisted living home did have an effect on her, and she experienced that from the perspective of one who has an anxious nature and is self-aware enough to feel vulnerable. She feels she can not chart her own destiny. I went down later, but did not open the conversation to any topic about her state of mind or emotions. I asked what she needed for food and continued on as normal without any change in my demeanor. At this juncture, it will be very important for me to be even in my interactions with her so there is nothing in my manner that catalyzes increased anxiety.
An interesting event occurred later in the day. As she was getting ready for bed, I told her that Marilyn would be in to take care of her in the morning. She asked "Who?" which didn't surprise me. She'd done the same with Pam. But this time, when I said she came into help in the mornings, she brightened up and obviously remembered her.
Every day I feel grateful for the Apria delivery man who decided to take his MBA here - of all the unexpected places.
Sunday, January 1, 2012
Frailty and Strength
Mom's condition blends frailty and strength. Overall, she is sound for her age. But when you combine with emphysema, osteoporosis, and dementia, she has vulnerabilities that can not be ignored.
I mentioned that she did well yesterday. She was able to travel outside the home and remain involved and alert. Today, she got up and made it to the toilet on her own, despite things still not being back to normal from the looks of it. She took her shower and shampoo well and put on her sweat pants herself without help from me. She ate all of her breakfast.
But soon after eating, she began grabbing at her stomach. I asked if she needed to go the bathroom again, based on what I'd seen earlier. But that wasn't the issue. I'd given her her weekly dosage of Fosamax this morning and as I thought about it, I wondered if it had been a mistake to give her the osteoporosis medication on a stomach that had not sustained much food over the last week. It seems to me that was probably the case.
But I have no way of knowing unless the aching subsides within a few hours. This has happened before - where the Fosamax has caused her extreme gastric discomfort. In fact, that was how I realized she couldn't administer her own medication any more. After falling and breaking her wrist and shoulder, she took an entire month's dosage at once.
So, I will continue to check on her today. If she is not better by tomorrow, or substantially worse by tonight, I will conclude it was not the Fosamax, but a serious ulcer and she needs to be in ER or 1st Care.
Essentially, she is strong, but there are these three factors that always complicate her life, and my ability to pinpoint what is causing today's mini crisis, all of which makes it harder for her to stabilize.
I mentioned that she did well yesterday. She was able to travel outside the home and remain involved and alert. Today, she got up and made it to the toilet on her own, despite things still not being back to normal from the looks of it. She took her shower and shampoo well and put on her sweat pants herself without help from me. She ate all of her breakfast.
But soon after eating, she began grabbing at her stomach. I asked if she needed to go the bathroom again, based on what I'd seen earlier. But that wasn't the issue. I'd given her her weekly dosage of Fosamax this morning and as I thought about it, I wondered if it had been a mistake to give her the osteoporosis medication on a stomach that had not sustained much food over the last week. It seems to me that was probably the case.
But I have no way of knowing unless the aching subsides within a few hours. This has happened before - where the Fosamax has caused her extreme gastric discomfort. In fact, that was how I realized she couldn't administer her own medication any more. After falling and breaking her wrist and shoulder, she took an entire month's dosage at once.
So, I will continue to check on her today. If she is not better by tomorrow, or substantially worse by tonight, I will conclude it was not the Fosamax, but a serious ulcer and she needs to be in ER or 1st Care.
Essentially, she is strong, but there are these three factors that always complicate her life, and my ability to pinpoint what is causing today's mini crisis, all of which makes it harder for her to stabilize.
Saturday, December 31, 2011
Surprises
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.
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.
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.
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