It's hard to write this blog in such a way that it is not a complete downer. The topic does not lend itself to uplifting emotions since much of what I need to talk about is watching my mother's decline and making a decision, if necessary, about her move to a facility where she can get constant care. I think she could be at the stage where an assisted living situation is better for her, but I am not sure. As she declines, I keep adjusting to her new state and I have no objectivity. She is my mother.
Today was shower and shampoo day. Her PCA told me that those suffering with dementia hate showers and getting their hair wet. I find that interesting because if I wash her hair over the sink, or if she goes to the salon for a shampoo and hair cut, there is no problem. But she absolutely hates showers and shampoos in the shower. Today I asked her to sit down and cover her face so she wouldn't get water in her eyes and nose, thinking this is what bothers her. Apparently not because she decided she wasn't going to have a shower and tried to leave. I am not big, but definitely big enough to stop her from leaving. So, I took the hose got her hair wet quickly and shampooed it and then rinsed. For some reason, she tolerated it better than I expected. Then she cleaned the rest of her body and actually was quite cooperative and willing to do that.
I don't understand this disease.
I took out clean pajamas which I have been changing every day that she has been at home convalescing. Once she was dressed in clean pajamas, she started to get in bed. I stopped her because I had made her tea and I wanted her hair dry. So we got out the hair dryer. While I dried her hair she moaned and said "Oh God", "Oh God", "Oh God" continuously.
This is how she has been responding to absolutely everything concerning her personal care lately. Getting up for breakfast, cleaning herself after using the toilet, getting dressed, getting undressed, climbing into bed. The only thing that doesn't elicit that response is eating and watching TV. Once she is at FRA Senior Day Care Center, I notice she doesn't do this at all. Once she is ready for the world and among friends, then she is able to cope, but it is getting ready and then changing clothes once home that seems to stretch her.
I don't understand this disease. What should be simple and familiar has the opposite effect on her than her social world at FRA.
I've also noticed each time she has been ill, that the characteristics of her dementia are worse. Illness adds a level of stress that totally overwhelms her. She has slept a lot while home recuperating. She is probably up no more than 1/4 of the day. Most certainly, much of that is her aged body healing, but when well, she will sleep more on the weekends than during the week.
At FRA, she will manage the entire day. True, she comes homes, eats, and then wants to go to bed immediately, but still she is active and doing things for nearly 12 hours. The stimulation of the Day Care Center is critical for keeping her engaged in living.
I can't imagine what it would be like for people like my mom if they don't have the quality of care she receives during the day.
Monday, September 26, 2011
Friday, September 23, 2011
Compassion or Duty
I do care for my mother. I still feel love for her, despite the burden I carry on a daily basis. Yet, I am not entirely convinced I do what I do out of compassion. I do care about what happens to her. I don't want her to die, as my aunt fears, because I have taken her out of her home, away from her cat, away from us, and away from her few remaining belongings. She has already lost so much.
Yet I can't say with complete honesty that I have the patience and devotion a true care giver would have. If she gets mean with me, what is best for her is if she does not incite anger, nor receive extra attention because of her behavior. Then the emotion of frustration and discontent can pass. Yet, I have not always, always treated her as I should when she has mocked my requests, or refused to let me help her. Exasperation at her making my job even more difficult has got the upper hand and I have had words with her. Some of this is probably mother/daughter. She has not forgotten that she is the mother and I the child. But some of it is being stretched just that little bit beyond the boundaries of my sense of compassion and concern.
There is no question that I will do this if and until keeping her at home clearly is not benefiting her as much as a assisted living with 24 hour care would. There was never any question when Poppy died that I would figure out how to take the next step. There was never any question that she would come to Evergreen so I could get to her easily in bad weather. There was never any question that once she wasn't able to live on her own, that she would live in our apartment. When we looked for homes here, the only ones that I truly considered were ones with attached mother-in-law (mother?) apartments. There just has never been any question. My parents cared for me through my infancy and youth; when they can no longer care for themselves, I will do what I can for them.
Fulfilling my duty isn't loveless. In fact, the act of honoring my duty engenders love in me. It reminds me she and I are tied by threads of common experience, DNA, and in my mother's case, gender. I share her values because she imbued me with them. We share the hope for grand children and great grandchildren, the value of family and the comfort of home. But more than that, she was my lifeline as I grew. To me, she was the most beautiful and wonderful mother in all the world. Those emotions did not disappear when we lived our separate adults lives although they were far below the surface. Now loving here is constantly re-enforced by my daily interactions with her.
But compassion is something else altogether. For me, the feeling of overwhelming sadness as my mother loses more of her independence and capability is not based in duty. An incident that happened this morning illustrates what I mean. I came in to tell her I was going to get groceries and take Gary to work when I noticed her sitting on her bed holding some of her disposal panties. She is not incontinent, which is a blessing I accept with gratitude each day, but unable to tend to her hygiene without help. The disposal panties help her maintain hygiene under these circumstances. This is the second time I have come in to find the panties near her or in her hands.
I asked if she needed to change her panties. Even though I needed to take Gary to work, helping her seemed far more important. She indicated she wanted to change her pants. I have learned this means she has had a bowel movement. So I immediately took her in to guide her through her hygiene. Her panties were not messy, but when she began to clean .. well, that was what she actually needed. She struggled with it as she always does. I have not assumed that it is my responsibility to clean her, but instead have encouraged her to care for herself in this way by handing her wipes and reminding her of what needs to be done each time I hand her a new one. Today, the struggle was harder; she was distressed more than usual, confused more than usual, dissatisfied with her performance more than usual.
So, I offered to clean her. This was a hard step for me - treating my mother as if she were an infant, but clearly, she was different today. My compassion overrode my innate aversion to tending to her physical needs in such an intimate way. This is my mother we are talking about, an exceedingly proud and private person and I am no more than her annoying daughter telling her what to do. The fact she let me was an indication of her exhaustion and need.
Once done she was clearly more confident and at ease. I walked out to the car, my heart aching.
Yet I can't say with complete honesty that I have the patience and devotion a true care giver would have. If she gets mean with me, what is best for her is if she does not incite anger, nor receive extra attention because of her behavior. Then the emotion of frustration and discontent can pass. Yet, I have not always, always treated her as I should when she has mocked my requests, or refused to let me help her. Exasperation at her making my job even more difficult has got the upper hand and I have had words with her. Some of this is probably mother/daughter. She has not forgotten that she is the mother and I the child. But some of it is being stretched just that little bit beyond the boundaries of my sense of compassion and concern.
There is no question that I will do this if and until keeping her at home clearly is not benefiting her as much as a assisted living with 24 hour care would. There was never any question when Poppy died that I would figure out how to take the next step. There was never any question that she would come to Evergreen so I could get to her easily in bad weather. There was never any question that once she wasn't able to live on her own, that she would live in our apartment. When we looked for homes here, the only ones that I truly considered were ones with attached mother-in-law (mother?) apartments. There just has never been any question. My parents cared for me through my infancy and youth; when they can no longer care for themselves, I will do what I can for them.
Fulfilling my duty isn't loveless. In fact, the act of honoring my duty engenders love in me. It reminds me she and I are tied by threads of common experience, DNA, and in my mother's case, gender. I share her values because she imbued me with them. We share the hope for grand children and great grandchildren, the value of family and the comfort of home. But more than that, she was my lifeline as I grew. To me, she was the most beautiful and wonderful mother in all the world. Those emotions did not disappear when we lived our separate adults lives although they were far below the surface. Now loving here is constantly re-enforced by my daily interactions with her.
But compassion is something else altogether. For me, the feeling of overwhelming sadness as my mother loses more of her independence and capability is not based in duty. An incident that happened this morning illustrates what I mean. I came in to tell her I was going to get groceries and take Gary to work when I noticed her sitting on her bed holding some of her disposal panties. She is not incontinent, which is a blessing I accept with gratitude each day, but unable to tend to her hygiene without help. The disposal panties help her maintain hygiene under these circumstances. This is the second time I have come in to find the panties near her or in her hands.
I asked if she needed to change her panties. Even though I needed to take Gary to work, helping her seemed far more important. She indicated she wanted to change her pants. I have learned this means she has had a bowel movement. So I immediately took her in to guide her through her hygiene. Her panties were not messy, but when she began to clean .. well, that was what she actually needed. She struggled with it as she always does. I have not assumed that it is my responsibility to clean her, but instead have encouraged her to care for herself in this way by handing her wipes and reminding her of what needs to be done each time I hand her a new one. Today, the struggle was harder; she was distressed more than usual, confused more than usual, dissatisfied with her performance more than usual.
So, I offered to clean her. This was a hard step for me - treating my mother as if she were an infant, but clearly, she was different today. My compassion overrode my innate aversion to tending to her physical needs in such an intimate way. This is my mother we are talking about, an exceedingly proud and private person and I am no more than her annoying daughter telling her what to do. The fact she let me was an indication of her exhaustion and need.
Once done she was clearly more confident and at ease. I walked out to the car, my heart aching.
Thursday, September 22, 2011
Then and Now
When my Mom first started at FRA in 2008, she could still manage most of her daily living needs on her own. But it was becoming less easy. Whereas before she could start, stop, and adjust her portable oxygen machine (too many years of smoking), occasionally she would forget. Since she would forget, she would become obsessed with the regulator and constantly look at it to make sure it was on and working. We locked it so she could not stop or affect the regulator. She no longer pays any attention to it.
At that time she was still reading, although she told me at one point it didn't matter if she had already read a book because it was like reading it new for the first time. Then she stopped actually reading and began carrying books around with her. She still carries books back and forth between FRA and home. Sometimes she reads out loud to those at the Day Care Center and that works since no one there (except the wonderful staff) care that she stops and starts most anywhere. But she does not read them at home at all.
Back in 2008 she still wrote letters to friends from Colorado and relatives. She wrote to one cousin that she has been writing to since WWII. She wrote to one friend from her building in Evergreen and two in Boulder. Now she looks at the cards and letters and asks me who these people are. I have tried to move the cards, but she finds others she has stashed away and tries to figure out why she has this message from a person she doesn't remember. She no longer writes anyone. But she keeps the cards close.
She used to be able to carry a conversation with people over the telephone and still dial out when she needed us. She talked with her sister and her step-brother, her nieces and nephews. She does not recognize any voice on the telephone but those of us she sees regularly and my aunt who calls her weekly. One day the phone rang and she didn't answer. She didn't remember what to do with it. That night I found her carrying the portable phone around; it was even by her bed that night while she slept.
Back then she could still carry a good conversation. She chatted with everyone at the facility and with family and was still entertaining. Now I have to piece together her intent as she has lost a lot of the words for the image she has in her head and gets frustrated and stops. I know her well enough to fill in, but it is not what she wants.
She hums/moans to herself when tired and repeats everything three, four, five times or more. She has a bad cough that is not going away and it tires her. Her actions and words have been worse due to the fatigue. We haven't been able to find a new PCA as the previous one doesn't want the change in hours we need and I wonder if I will need to place her in assisted living simply because I can't stay home to care for her and we can't find anyone else in this town whose needs match ours.
At that time she was still reading, although she told me at one point it didn't matter if she had already read a book because it was like reading it new for the first time. Then she stopped actually reading and began carrying books around with her. She still carries books back and forth between FRA and home. Sometimes she reads out loud to those at the Day Care Center and that works since no one there (except the wonderful staff) care that she stops and starts most anywhere. But she does not read them at home at all.
Back in 2008 she still wrote letters to friends from Colorado and relatives. She wrote to one cousin that she has been writing to since WWII. She wrote to one friend from her building in Evergreen and two in Boulder. Now she looks at the cards and letters and asks me who these people are. I have tried to move the cards, but she finds others she has stashed away and tries to figure out why she has this message from a person she doesn't remember. She no longer writes anyone. But she keeps the cards close.
She used to be able to carry a conversation with people over the telephone and still dial out when she needed us. She talked with her sister and her step-brother, her nieces and nephews. She does not recognize any voice on the telephone but those of us she sees regularly and my aunt who calls her weekly. One day the phone rang and she didn't answer. She didn't remember what to do with it. That night I found her carrying the portable phone around; it was even by her bed that night while she slept.
Back then she could still carry a good conversation. She chatted with everyone at the facility and with family and was still entertaining. Now I have to piece together her intent as she has lost a lot of the words for the image she has in her head and gets frustrated and stops. I know her well enough to fill in, but it is not what she wants.
She hums/moans to herself when tired and repeats everything three, four, five times or more. She has a bad cough that is not going away and it tires her. Her actions and words have been worse due to the fatigue. We haven't been able to find a new PCA as the previous one doesn't want the change in hours we need and I wonder if I will need to place her in assisted living simply because I can't stay home to care for her and we can't find anyone else in this town whose needs match ours.
Wednesday, September 21, 2011
Why Start Now?
My mother came under my care in July of 2001. Poppy, her dear husband, and the father-like figure to me and my children, passed from cancer. His death was fast as he died of heart failure before the cancer could harm him more, and my mom was lost to the world. She had not been eating, she was hallucinating, and told me she had been told she had alzheimer's disease.
It turned out she was suffering from dementia, but not in an advanced state yet, and it was most likely brought on by complications due to emphysema induced pneumonia when she did not get sufficient oxygen for a period of time. This took me a while to sort out at the onset. Once Poppy passed, I sent her to my aunts and uncle in California and began to look for her care. We moved her out of her home, into an assisted living facility, and then I put her under my own family doctor's care in Boulder.
We sussed out that she needed more oxygen in order to function normally and that she did not need the battery of medications she had been prescribed. With the change in meds and increase in oxygen, she was able to move to another wing in the facility and live independently (with frequent checks by and the community lifestyle of the building). That meant cooking meals twice a day and eating with others once a day. When we moved to Evergreen, we moved her as well and she again lived in a great facility, but without the advantage of meals provided once a day.
In 2006, when we were preparing to move here in Alaska, we noticed that she was losing weight. That continued after moving her to a senior apartment complex in Fairbanks. Late 2007 we moved her in with us and early the next year down to her own apartment in our house. She continued to lose weight, despite us checking on her for regular meals. Later that year she fell while walking across April ice on our driveway to get her paper, breaking her shoulder and wrist. At this point, we became aware that she should no longer be on her own during the day and started taking her to FRA (Fairbanks Resource Agency) Adult Day Care Center.
In January of this year, we succeeded in getting PCA care for Mom in the mornings and have gotten approval to extend that care to evenings and weekends through State funded programs.
So, why am I beginning this blog now? I have watched the progression of her dementia for several years, but what is prompting me to post my observations and lay out my soul to the world?
In a word, I want a forum to share what I see daily. I think it will help me decide if and when I should place mom in assisted living care. I am hoping it will also help me deal with losing her in this way and the sadness and hurt I feel watching my mother's mind betray her. I will record more of what has happened recently as days go on and hopefully others will follow this blog and contribute.
It turned out she was suffering from dementia, but not in an advanced state yet, and it was most likely brought on by complications due to emphysema induced pneumonia when she did not get sufficient oxygen for a period of time. This took me a while to sort out at the onset. Once Poppy passed, I sent her to my aunts and uncle in California and began to look for her care. We moved her out of her home, into an assisted living facility, and then I put her under my own family doctor's care in Boulder.
We sussed out that she needed more oxygen in order to function normally and that she did not need the battery of medications she had been prescribed. With the change in meds and increase in oxygen, she was able to move to another wing in the facility and live independently (with frequent checks by and the community lifestyle of the building). That meant cooking meals twice a day and eating with others once a day. When we moved to Evergreen, we moved her as well and she again lived in a great facility, but without the advantage of meals provided once a day.
In 2006, when we were preparing to move here in Alaska, we noticed that she was losing weight. That continued after moving her to a senior apartment complex in Fairbanks. Late 2007 we moved her in with us and early the next year down to her own apartment in our house. She continued to lose weight, despite us checking on her for regular meals. Later that year she fell while walking across April ice on our driveway to get her paper, breaking her shoulder and wrist. At this point, we became aware that she should no longer be on her own during the day and started taking her to FRA (Fairbanks Resource Agency) Adult Day Care Center.
In January of this year, we succeeded in getting PCA care for Mom in the mornings and have gotten approval to extend that care to evenings and weekends through State funded programs.
So, why am I beginning this blog now? I have watched the progression of her dementia for several years, but what is prompting me to post my observations and lay out my soul to the world?
In a word, I want a forum to share what I see daily. I think it will help me decide if and when I should place mom in assisted living care. I am hoping it will also help me deal with losing her in this way and the sadness and hurt I feel watching my mother's mind betray her. I will record more of what has happened recently as days go on and hopefully others will follow this blog and contribute.
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