Sunday, November 15, 2009

Life with Mother

I returned to Mother's side after my weekend away with a great deal of trepidation. What would I find? Would she accost me with some new accusation, rehash the last one like some interesting new twist on water torture, or would she have forgotten all about it? The one thing I didn't expect was that she would be lucid. While that is not a word I would use to describe her, she was contrite. She seemed genuinely sorry, as if she somehow knew something she had done or said had pushed me away. I felt even worse than I already felt, heavy guilt now mixing with my disappointments from the weekend. I brushed it all aside as my having been in Dallas, figuring it would harm nothing to have her believe I had been there for longer than a quick day. She even was aware that the company I work for maintains its head office there, so, careful not to lie, I just said casually that is correct, but I did meet Amy while there. (Obi Wan taught me well - and if you don't know what I mean by that, don't worry about it, it just means you're not a total nerd, unlike me.) I walked away from that visit wondering if her wild and crazy behavior the week before really did have more to do with her heart condition than her mental health. Because if her heart wasn't working correctly, I wondered, blood and oxygen surely wasn't getting all the way upstairs. Maybe, just maybe, with the new medication for her heart, she would be bearable again.

And maybe that was a contributing factor, but that new sweet Mom didn't last. She has swung back and forth like a pendulum all week. Even without a brain eating disease, this would have been a challenging week for her. Her sole remaining sibling is in rapidly failing health (a report I did not credit as real until a third party who happened to be in her room when the call came in verified it), she herself continues to have a rapid heart rate and now has developed pneumonia. The disease has taken full advantage of this to take her on a mental roller coaster ride. I actually saw her cry, I mean really cry, this week. She had cried in the hospital a couple of weeks ago, but she had been in a lot of pain mixing with her severe anxiety that day. Her crying jag this week was caused by nothing more than a bumpy ride in the facility van on the way back from a field trip. To put that in perspective, I've tried to think of the last time I saw my mother cry prior to these two recent events. If I give her credit for crying when my father died, which I actually do not have clear memory of her doing, it has been since January, 1992.

I have no doubt that her ancillary medical issues are escalating the Alzheimer's. But, Alzheimer's is, even by her medical team's admission, the primary culprit. It is a fatal disease. That actually does not frighten me, either for my mother, or for my own sake should I ever be unlucky enough to fall into its arms. Mother has lived with a fatal disease in Parkinson's for over two decades now. And, she's 91. The reality of her situation is that something sometime will be fatal. And, as near as I can tell, and from what I have researched, she is not in any pain as a direct result of the disease. If anything, it may be helping her deal with the general indignity of a body breaking down by simply making her unaware of the more unpleasant facts of her physical situation. There are moments where I think she knows something is amiss. She will make a statement meant to set the record straight about something to prove she is still in control of her facilities. I have heard her say that she knows the famous plastic orchid that we placed in her room is fake, only to proudly point out its new blooms to me the next day. She has introduced the nursing staff to my dog Cheyenne as a male, then she will tell them she knows Cheyenne is female. On Cheyenne's next visit, her name has been changed back to Hans or Shane, and she is once more firmly a male. But, in a way, those brief moments of clarity make the rest of it that much harder to endure.

I never know what is real and what isn't now. I don't know what to react to and what to write off as delusion. The head nurse at her nursing home suggests I look into everything rather than make a potentially harmful mistake of ignoring a legitimate complaint. She also suggested that I try to gauge the undercurrent of what drives the complaints and try to address that. As an example, she has repeatedly insisted that the nurses are on strike, which she wrinkles up her nose and denounces as being "disgusting!" Before I caught on, I would look out into the common rooms and notice more nurses than patients, most of them familiar faces, and wonder what in the world was happening. But, I was advised, maybe Mother feels she has not received enough attention that day and so the staff, to her mind, must be on strike. That's all well and good, but it's exhausting. I feel like Alice sliding down the rabbit hole.
The most frustrating part of the whole nasty mess is that she cannot be reasoned with, even when her behavior is detrimental to her own well being. Currently, that is manifesting itself by her refusing to stay on oxygen or to accept nebulizer treatments for the pneumonia. Confronted with her x-ray, which I was sure would sway her, she announced that the machine was outdated and the man who was operating it was an idiot.

Force her to accept treatment, you say? You quickly learn that the legal waters I am treading are murky at best. I do not have Medical Power of Attorney, but even if I did, unless Mother is completely incapacitated, she is in control of her own medical treatment. I cannot force her. Yet, when she pulls something brilliant like checking herself out of the hospital against medical advice, I am the one who has to drive her home. I have no say, in other words, but I have to be there to pick up the pieces.

All I can really say is: Alice, this ain't no Wonderland!

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