I saw the most interesting transition in mother's behavior over about 1 1/2 hours on her birthday last week. I arrived at the end of one dosage cycle for pain meds, and stayed through about 45 minutes into the next cycle. So, I got to see her "with pain" and without it. Or so I assume. It seemed more like with will and determination, and without them, but I am assured by the nursing staff that pain is there, but Alzheimer's causes the sufferer to be unable to identify it as such. Rather, it causes generalized agitation, anxiety and fear. Whatever was the cause, her behavior was like day and night. When I arrived she was in a bad mood. She ignored the things I brought to share with her for her birthday, refused even a single bite of cake, and spent all her time and effort trying to get out of the geri chair. She made a sweet plea to me to get me to take her away, but when I told her I couldn't take her, she turned hostile.
She would struggle to get out of the chair, pushing and pulling on the tray that keeps her in, trying to slide out, etc. After a few minutes she would give up, exasperated, and collapse back against the chair back. Then in a minute, she was at it again. This went on nonstop. At first I talked to her about her situation, the reasons for it, and how sorry I was that she was unable to do the things she used to be able to do, but eventually, I stopped. Suggesting that she would have to accept that she couldn't walk or talk well enough to be out of the chair and effective in communicating her needs seemed pointless, because she clearly wanted none of that. Her behavior indicated that she did not know or believe either of those abilities was impaired. And yet, they are.
Then she got her pain meds.
Over the next 30 minutes the physical struggling and efforts to talk slowed down and then stopped. She became a relaxed, calm, serene, and seemingly happy person. She accepted my offer for some birthday cake and responded with a beautiful smile at hearing happy birthday wishes.
I can take away many things from this experience. Pain meds reduce the desire to escape from your situation, whatever it is. Alzheimer's makes it harder to remember that you can't do things. But in an odd twist on logic (which I can handle now that I realize there are ways of seeing for which logic is not well suited), I also take away that failure to accept what is true is painful.
Wednesday, June 30, 2010
Sunday, June 06, 2010
She started with an, "I have a problem" preface, after which she explained in a string of words that sounded like actual words but for the most part made no sense, except for these: "I can't do anything; I can't do anything right; I can't do anything at all." That was last Wednesday. It was also the first time since her move to assisted living, and now to skilled nursing care, that she admitted that there was something she couldn't do. Until Wednesday, the monumental struggle was always to explain to her why people were interfering in her life ("to help you" I always said), to which she always responded, " but I can do all that -- I do all that myself." You just can't argue with her logic, and the facts, well, her facts and mine just don't exist in the same universe.
And indeed, it was quite evident that she couldn't do anything. Her hands were shaking so badly that I had to feed her. By evening (after I had gone home) she had fallen 3 times and the next morning, she fell again. So, she had lost the ability to walk and to feed herself in, literally, a day. I'll make the long story short here: I got a referral to hospice and I am so glad I did. It's not clear whether she's got 2 hours, 2 weeks or 2 months to live, but it is clear that the disease has taken a serious turn for the worse. It is so good to have hospice nurses and assistants involved, who are focused on managing pain, anxiety and frustration, as the body passes through the phases it must when life comes to an end.
But that's not all she lost. Today when I visited, she was in the dining room in her "geri" chair, asleep. It took awhile for her to wake up, but when she did, she ate about half her lunch. But the whole time I was there, talking to her and feeding her, she was irritated, angry and hostile. She yelled at me for touching her arm ("Goddamn-it -- leave it alone"), and again when I asked her at one point if she wanted more of anything to eat ("NO! I don't want anything!" as she slammed both her hands on the table).
I always announce myself when I come to see her because, for awhile now, she has taken a few seconds to recognize me. She always does recognize me eventually, and she consistently acts towards me in a very loving way -- not at all like she acted today. So, though I had already said that it was me when I first sat down, and had talked about my brother and when we would both be by to see her next, I asked her if she knew who I was and as I expected, she answered angrily, "no."
Maybe it's just the disease. I've heard that it can exacerbate personality traits. And this was my mom toute crachée when I was a little girl, before she divorced my dad, whom she came to hate during their 9 years of marriage. Talk about a walk down memory lane, or perhaps I should call it, nightmare alley. This experience sheds a little more light on the questions I've been exploring regarding who we "really" are, and change. We can control our presentation to and interaction with others to some degree, but when control dissolves, who we are at center is revealed. Superficial change is not real change -- not good enough.