Wednesday, March 30, 2005


During one of my less-than-good days a few weeks ago...

...I ran into a treasured acquaintance with whom I am slowly developing an interesting friendship. He was in the middle of work, I was in the middle of choring, so we didn't have much time to talk. As usual, when he asked how I was doing, I choose truth over polite chatter, shook my head, shrugged my shoulders and said something along the lines of, "Not one of my better days; it's good to be out, though," communicating, non-verbally, that it was also good to be greeted by his dynamism and cheer.
    He immediately took on an expression of concern and related the following to me:
    He cautioned that I need to "be careful". Some years ago his brother and sister-in-law took care of his mother, apparently a difficult woman with whom relationships were often testy if not downright explosive. His sister-in-law found the situation especially stressful (no doubt because she gave most of the care). Soon after his mother died so did the sister-in-law. He mentioned that his sister-in-law had "other health problems, of course", but the consensus was that immediately after his mother's death his sister-in-law collapsed and died of the stress involved in caring for his and his brother's mother. He warned me that this phenomenon is not uncommon for caregivers.
    I assured him that although caregiving for my mother is sometimes stressful and anxiety ridden, my mother, herself, is not the cause of my stress; her disposition is, in fact, never a part of the problems I face and sometimes a part of solutions. I added that I understand how caregiving can drain one so much that what happened in his sister-in-law's case is probably something to keep in mind and thanked him for his concern.
    This morning I was reminded of this conversation when I scanned the current issue of the weekly newsletter emailed from It contained part of an article reviewing a study done of caregivers to parents suffering from dementia. According to the results of this study these caregivers fare far better (including emotionally and financially) once their caregiving stint is over "than non-caregivers". Although the article is specific about the identities of the caregivers (daughters of parents with dementia who are the care recipients) and is targeted toward "professionals" who are involved in the counseling of these particular caregivers, it is not specific about the comparison group of non-caregivers so it's hard to say whether these non-caregivers are siblings, an unrelated control group, or whom. However, the article was specific that some of the reasons for these caregivers flourishing after their care recipients' deaths has to do with a sense of relief upon the death of the care recipient (which my mother experienced after my father died and I understand is common in the case of spouses who've been intense caregivers to their spouses); the peculiar skills introduced to and honed by caregivers while involved in caring for recipients, all of which are unusual and particularly useful skills in life maintenance; and a sudden lack of drain on financial resources, which is typical when one is caregiving for a demented relative.
    If you are a regular reader you know that I have periods of high confidence in the abilities I've developed while caring for my mother and their usefulness to me after her death which fluctuate with periods when I anxiously expect to be so exhausted when my mother dies that I will have no interest in continuing my life. I am sure this fluctuation is not unusual in the life of caregivers engaged as am I. I am also sure that it is rarely necessary for those who know me to worry about my lows despite the fact that we live in a culture that would like very much for everyone to never experience periods of discouragement and depression and would like to counsel and medicate all such periods out of existence. This article is, of course, geared toward this view. The importance of this article, though, is not in the advice to the "professionals" who look after caregivers who've sought their counseling. Its importance is, rather in it's unspoken affirmations:
  1. Finally, society is beginning to notice and study those of us who devote ourselves to intense caregiving of Ancient Ones for a period (often a long period) of time, and
  2. noticing that unexpected and life-affirming benefits accrue to those of us who devote ourselves to loved ones as intense caregivers.
    My reaction? Hallelujah! You (universal) can ignore us, wonder about our sanity in taking on such a role, worry about us, make our task even more difficult than it already is by trying to bully us into a thinking we are nothing more than glorified parents and/or into believing that we must be doing all kinds of things wrong when we devote ourselves to caregiving with a focus and intensity that scares the bejesus out of you and which you would never be "foolish" enough to pursue. You can guiltily tell us that we are headed for heaven because of our good deeds as you ignore that a good deed from you would help alleviate our difficulties. You can consign us to the least rewarded societal casts. You can pray and manipulate to make sure that you are never in line to be called upon to take on such a task. Yet, and yet, we not only survive, when it is all over and done, we thrive. Amazing. In this society that so devalues caregiving that we insist not only on not rewarding it except in silly, stupid ways and work hard to punish those who 'avocationally' give care to those in our families who need it, this is an important lesson, one that is worded, in the above mentioned article, precisely to be understood by those who think that the worst that can happen to them is to step up to the plate and reformat their lives when someone they love needs intense care. As it turns out, I am not crazy to think this is the best decision I ever made. There is, now, a growing body of research that proves that I may be right.

    Related:  When MPS and her daughter were here almost two weeks ago for a surprise visit she and I talked about caregiving from her point of view as a mother and mine as a daughter caring for our mother. Turns out that she, some time ago, came to exactly the conclusion I have: When she cares for those she loves she is convinced that she is caring for herself in one of the most important ways she can. Her husband, she says, often tells her that it is her caregiving that gets in the way of "her life", which is to say, the part of her life that he feels belongs to him. "That isn't the problem," she says, "it's all the other stuff; my job, command performance family does not create nearly the stress the outside stuff does."
[This post originally begun 3/24/05 @ 1618. Continued and ended on the date posted below.]

    Can't remember, now, why I didn't get around to publishing that above. Oh well. Here it is. The article mentioned above remains important.
    I want to pause this morning and mention something to which I'll be addressing myself more fully in the days to come. I'm becoming exhilarated about approaching the business/legal end of what I am doing, in foremost to assure that my initial days after my mother's death are secure. As a sub-routine, too, I am going to address our voluminously out of control paperwork situation. Thank god we've got a shredder. Which is about 6 years old and has never been used.
    The weather has been deceptively sunny through our front windows but cold. Mom has, literally, stuck her nose out a couple of times over the last few days and quickly retreated. She's been sleeping a fair amount but had a long night, last night. Didn't go to bed until I did, around 0100 this morning. She wasn't agitated, just, well, awake, enjoying a raft of shows on TV about earthquakes and volcanic eruptions that cause tsunami.
    One of my projects today is to feed the rose that revived. Maybe, if the wind dies down, I'll move some border bricks. Begin a cursory sort of boxed papers (including old, opened, dispatched mail) that are in no particular order. I'm excited about this. I'm a closet nerd, among other things. Mom likes to sort paperwork, too. It's sort of like Christmas. I don't think we'll make it to the lab until tomorrow, although I may be wrong.
    Ah. The temperature is supposed to be 56 in downtown Prescott. Probably around 50 up here. Light winds. Lots of sunshine.
    Wanted to mention, I've placed a targeted link to the list of abbreviations I use in here and their definitions. You'll notice it over to the right in the first section of links. And, no stats and no Bowel Movements since my last statting, although I expect one, probably ample, today. I'll restart stats at that point. No changes to medication schedule.
    I'll check in again...

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