I might mess this one up, some, so bear with me.
    This afternoon as I returned to the facility after stopping at home to deliver laundry, turn on the cooling machines and assure the kitties that I'd be back this evening and, yes, The Mom is still improving and will be coming back to us at home, I was stopped in the hall just outside my mother's room by one of the two therapists who handles Mom's daily PT/OT. Aside from assuring me that, even though my mother was tired today in therapy, the outing she and I took this morning was good for her and aside from encouraging me to do more of this with my mother, she told me something that confirms some of my long held suspicions.
    She decided to try my mother at a skill practice that, typically, people with "light dementia" (interesting, isn't it, the professional phrase's relationship to my own label for my mother's dementia, "Dementia-Lite") don't perform well. Although I didn't understand all of the description, it involves, first, setting up long (relative term) round pegs then having the client put washers over the line of pegs. Another part of it, even less well understood by me, apparently involves matching the set of standing long round pegs with a set of short round pegs. The tasks are based on a Chinese game with which I am unfamiliar and, the OT continued, can easily confuse even the lightly demented. Seems my mother not only had no trouble at it, I can imagine, from what the OT described, that my mother probably polished off the tasks and wondered, "Okay, what's the point of this?" although I doubt that she said this aloud.
    I was smiling broadly as the OT told me of my mother's facility with the tasks. I also nodded, knowing the dimensions of my mother's dementia (must look up the relationship between those two words) and not being surprised, really, at my mother's success.
    This wasn't the end of what the OT had to say, though. She went on to tell me of a scenario she watches play itself out over and over with people who come in with Dementia-Lite. The person is placed in a setting, either for rehab or for a permanent stay, much like the facility my mother is in: Little available stimulation, few visits with friends and relatives, changing staff, changing roommates, no one available in any concentrated way to take the client in hand and guide them into a stimulating life, a lot of time spent indoors away from any kind of an environment that echoes normal concerns, let alone concerns about which the client is familiar from their own life. Added to this, the relatives and/or friends, especially spouses, she tells me, but often others, as well, are completely bamboozled by the changes taking place in their loved one. The attending ones spend most of their time trying to correct their loved one or responding with dismay or anger or alienation to what their loved one says or does, thus, allowing the loved one to slip further and further away from them. Under these circumstances, the OT said, the dementia increases. Inexorably. She watches this happen time and time again.
    She spoke to me about this because she wanted me to know that this isn't happening to my mother. She explained to me that the reason it isn't is because, through our situation, instead of expecting my mother to adjust to me or assuming that my mother's dementia means that no one can make any adjustments, I am adjusting to my mother. Underlying her explanation was the clear insinuation that as I adjust to her, I preserve her confidence in herself and her relationship to the world as she sees it, understands it and continues to experience it. Thus, my mother continues to use her brain to work things out. She may not work them out, always, as I would or as society would have her work them out. Her understanding of life may be completely and totally different than mine in some areas because of her dementia, but by confirming that her reality is as legitimate as mine, by incorporating her reality into our shared life just as I incorporate my reality into it, I not only keep her firmly in her life, but I keep her in our life and in the life of the world at large. When she is within our shared life she expects to be a force with which to be reckoned, conducts herself as such and she is. When she is in the world at large she expects to be a force with which to be reckoned, conducts herself as such and she is.
    This is, of course, not to say that there are types of dementia which do not incorporate stages in which such intense involvement of those close to the person with dementia makes no difference. Of course there are. But, there are some dementias which do respond positively to this intense involvement by stabilizing and, when that involvement is not available, these dementias worsen.
    Writing all this with the intent to publish is fraught with risk for me because I'm aware of how impossible it is for most of us to follow our demented relatives rather than lead them. First and foremost, it is usually economically impossible. It is often emotionally impossible. It is intellectually inconceivable, as well, and apparently disastrous on several levels for most of us to, willy nilly, decide not to bother to think ahead to try to preserve some semblance of a separate life so that we have a safety net, at least a minimal one, upon which to fall when our Demented One's life ends. Believe me, at this time I do not have a safety net...and, within the last few weeks, a timetable, however tractable, for my mother's demise has entered our lives. There is a possibility of constructing a type of safety net before she dies, but the possibility is dim and bleak and may not work. Thus, on occasion, when I take a moment, here and there, to consider "the future", I experience moments of pure fear. I know that not only does my home society look askance on the likes of me and what I've been doing, I am constantly blamed in advance, in the literature which purports to offer me support, for whatever fate awaits me; a fate which is often described in miserable detail in financial, physical and emotional terms.
    Not fun. But. I gotta tell you, I will not be changing my course. I've suspected that the way I've been doing my and my mother's lives has been best for both of us. I now have confirmation that I am right in terms of her life. I believe that I will have confirmation, in some way, at some time, that I have been right for me. It will, I also suspect, not be a type of confirmation that my society finds respectable or desirable. But I think I'll be able to live with it. In fact, I think that I would not have been able to live without doing what I've been doing.
    When push comes to shove, and, believe me, concentrated caregiving of anyone of any kind, in our society, right now, is the epitome of this, we all do that with which we can live...or we don't live.
    Am I making sense to you? I doubt it. But, you know, it makes sense to me. It has, it does and I am sure that it will.
    Later.
- posted by Gail Rae @ 20:02   email  this post