Thursday, July 27, 2006
Response to first part of Bailey's comment to the immediately previous post:
I'm not surprised by your amazement at the first conversation with my mother that I posted. There are days when memories of both conversations and others of their ilk amaze me. This, I think, is why I posted them. This is also why I call my mother's dementia, "Dementia-Lite" and why I hesitate to use, as Deb so aptly put it, "the A word" when I talk about my mother's dementia. My mother truly is unable to conduct the business of her life...and she truly does have sink holes in her memory. Yesterday, for instance, when she arose she asked me, yet again, where her sister's family was, each by name. Her sister and brother-in-law are long dead. Their two children are scattered. I reminded her of each of their dispositions, with details, while we were conducting the sitting down part of her bathing. Then, not 10 minutes later, as she was standing up facing away from me while I scrubbed her back, she said, "You haven't answered me about [sister, brother-in-law, niece and nephew]." So, I told her, yes, I did, just a few minutes ago, but I would tell her again as soon as she is face to face with me (she has a hearing problem). She is definitely demented to the point of not being able to conduct her own life business (thus, she is extremely vulnerable) and I don't dare let her answer the phone, as those with whom she speaks come away thinking she's not at all demented, but she doesn't remember, within in minutes after the conversation, even picking up the telephone! Another caregiver who cares for more deeply demented parents expressed doubt that what I write is true. Sometime last week, in fact, I wrote an e to Deb telling her that, well, here, I'll quote myself, because you are mentioned:
The thing is, while Old Age is fundamentally egalitarian, it is absolutely not egalitarian in the detail. I have no idea why my mother is still my mother despite her dementia, when so many others lose their parents long before those parents die. Neither does Medicine. I don't know why my mother can stand to irony, cynicism and absurdity when she cannot be trusted to pay her bills, handle a household maintenance issue, change her clothes, bathe herself in a timely manner, take her medication, feed herself properly, etc. I don't know why she enthusiastically plays Brain Age (although she plays it "wrong") but can't remember how to use a microwave, a stove, a computer, a toaster, a remote control or an automobile. Neither does Medicine. So, I don't worry about "reasons" and I ignore all professional prophecies unless they appear to apply to my mother, as did The Wondrous FNP's summation and prophecy [detailed here and here]. I just keep her path clear, give her my full support (physical, intellectual and spiritual) as she walks it, commune with her, protect her and enjoy her while I can. And, I tell our story, unlikely as it may seem. I'm usually too busy keeping an eye on my mother as she negotiates the spaces between her bedroom, the bathroom, her rocker and the dinette table and making sure she doesn't lose her sense of family, which has always been of utmost importance to her, to worry about how unlikely it seems.
And, as are you, I'm continually amazed by it.
One of my learning curves over the past month as I've become acquainted with other caregivers to the Ancient demented is how easy I have it in regards to my mother's dementia. Although I know better, I occasionally feel guilty that I appear to make a big deal, by my obsessive reporting in my journals, out of taking care of my mother when it has become obvious to me that my story has a much easier trajectory and will most likely have a much easier climax and denoument than the stories of most caregivers to the demented. And, yet, I continue to report. Obsessively.This is also one of the reasons I found the support group I joined not adequate to my needs (aside from the major reason that I don't function well in support groups because I am, fundamentally, a very contented extreme loner). I attended for, oh, I guess about five weeks. Week after week, as the participants (which included folks dealing with relatives disabled by schizophrenia and bipolar disorder, but mostly comprised caregivers to those with Alzhemier's and other age related diseases/disabilities) passed the "talking stone", each member would tell some incredibly frustrating, heartbreaking story about a caregiving incident in their lives. The stone would be passed to my hands and I would have nothing tragic to report and my frustration level was, at that time, anyway, obviously not nearly as high as that of the other members. That was the first time I got the sense that others believed I had "nothing to complain about" or that I was glamorizing my experience, not facing it. As well, the advice and support offered was not only not helpful to me but there was a lot of response to me along the lines of, "Well, keep your senses tuned, dear, one of these days your mom is going to be as bad as my [care recipient]", which is the argument the facilitator gave me for continuining with the group when I let her know I'd no longer be attending. Too, I found that I was dispensing lots of sympathy and compassion and not getting any, for which I didn't blame the group. How, when one is dealing with the deeper levels of demential disability, does one "sympathize" with someone whose mother continues to display wry, to the point humor, remains animated and engaged with her environment (even when she is mistaken about the details of that environment) and does not appear to have lost either her sense of herself or her sense of others, despite the fact that she absolutely needs someone to run her life, to the smallest points of reminding her to drink liquids and go to the bathroom in a timely manner? It's been eight years since I attended that group. I would venture to say that I would continue to find myself the odd man out. The Director of the Adult Day Care Center Mom and I visited even remarked that my mother is "much more high functioning" than any of the other adults to whom the Center caters. I had to agree, she is.
The truth is, I believe that [Deb's story], Paula's story, Bailey's story, Mona's story, Patricia's story, Karma's story, are all typical of the Caregiver to An Ancient Demented One story and are much more useful and valuable than mine. Not that I believe there aren't others who are following the same path as my mother's and mine. Our Fed-Ex lady and her husband are taking care, in home, of her in-laws, both of whom have Dementia-Lite and other old age infirmities much like my mother. The Chandler friend/family who visits and took care of her father in-home up to his death also has a story similar to mine and my mother's. However, I understand, without apology, that our stories aren't the urgent ones, at this time. They do not contain the level of caregiver and care recipient angst with which the more common Caregiver stories are fraught.
The thing is, while Old Age is fundamentally egalitarian, it is absolutely not egalitarian in the detail. I have no idea why my mother is still my mother despite her dementia, when so many others lose their parents long before those parents die. Neither does Medicine. I don't know why my mother can stand to irony, cynicism and absurdity when she cannot be trusted to pay her bills, handle a household maintenance issue, change her clothes, bathe herself in a timely manner, take her medication, feed herself properly, etc. I don't know why she enthusiastically plays Brain Age (although she plays it "wrong") but can't remember how to use a microwave, a stove, a computer, a toaster, a remote control or an automobile. Neither does Medicine. So, I don't worry about "reasons" and I ignore all professional prophecies unless they appear to apply to my mother, as did The Wondrous FNP's summation and prophecy [detailed here and here]. I just keep her path clear, give her my full support (physical, intellectual and spiritual) as she walks it, commune with her, protect her and enjoy her while I can. And, I tell our story, unlikely as it may seem. I'm usually too busy keeping an eye on my mother as she negotiates the spaces between her bedroom, the bathroom, her rocker and the dinette table and making sure she doesn't lose her sense of family, which has always been of utmost importance to her, to worry about how unlikely it seems.
And, as are you, I'm continually amazed by it.
Comments:
<< Home
originally posted by Mona Johnson: Thu Jul 27, 03:15:00 PM 2006
Gail,
Maybe another part of why your local support group didn't fit your needs is that most people don't have your calm, somewhat bemused philosophical approach to the challenges of caregiving. This philosophy and your sense of humor make your blog such enjoyable reading!
Gail,
Maybe another part of why your local support group didn't fit your needs is that most people don't have your calm, somewhat bemused philosophical approach to the challenges of caregiving. This philosophy and your sense of humor make your blog such enjoyable reading!
originally posted by Bailey Stewart: Sat Jul 29, 01:22:00 PM 2006
And your mother may never get that bad - just because a person has a dementia doesn't mean they'll develope Alzheimer's - has the doctor said Alzheimer's? I compare it to AIDS and HIV - dementia being HIV - some people can be positive for the disease and never develope full-blown AIDS; some people can have dementia without Alzheimer's.
And your mother may never get that bad - just because a person has a dementia doesn't mean they'll develope Alzheimer's - has the doctor said Alzheimer's? I compare it to AIDS and HIV - dementia being HIV - some people can be positive for the disease and never develope full-blown AIDS; some people can have dementia without Alzheimer's.
originally posted by Karma: Sun Jul 30, 04:48:00 PM 2006
Thanks for recognizing me; I appreciate it. I went to a support group too which I didn't feel like met my needs, but I'm going to go back because I sense that the groups change a lot over time depending on who shows up. There may be other alternatives too - like the Alzheimer's Association hosts groups, so do hospices, and my mom's facility has a group for all of the residents. In some way, these blogs are also a support group.
Post a Comment
Thanks for recognizing me; I appreciate it. I went to a support group too which I didn't feel like met my needs, but I'm going to go back because I sense that the groups change a lot over time depending on who shows up. There may be other alternatives too - like the Alzheimer's Association hosts groups, so do hospices, and my mom's facility has a group for all of the residents. In some way, these blogs are also a support group.
<< Home
