Sunday, September 18, 2005


Nothing unusual about yesterday...

...except that, at my mother's request, after breakfast I stopped taking stats for the day. The circumstances are recorded over at today's post for Mom's Daily Tests and Meds. If everything seems okay today when I awaken her (planned at 1100) I'll probably not take stats today, either. Although I assume that stress does not affect her blood sugar, I know it affects her blood pressure and I'll bet if I manage to keep myself from fastening that damned wrist cuff on her today her blood pressure will remain in the two 2.5 mg lisinopril range all day.
    We have another plan, a trip to a grocery for some essentials. I'm hoping she'll accompany me but I'm not going to push. As usual, she expressed enthusiasm yesterday but may not today.

    I've got a bug up my ass that I want to mention before I continue cataloguing for the Table of Contents. Yesterday I was leafing through old magazines and pamphlets in an attempt to reduce some of our constant clutter and throw away those I know we'll not again access. I wish I could remember in which particular magazine/tabloid/newsletter I saw the following (which is a paraphrase from memory): "Don't feel guilty if you aren't in a position to provide care for your parents during their later years. There are plenty of fine services out there ready to provide adequate care to your elderly parents. Use them. Not only are they better prepared to handle the job, your time with your elderly parents will be freed to enjoy their company without irritation."
    On first reading I dismissed it with a curt, vaguely critical, "Yeah, right." This isn't the first time I've read something along these lines. After I'd dumped the lot at the recycling bin a mile down the street certain trigger phrases continued to wander, in black-on-white serif type, across my internal line of vision: "plenty of fine services"; "better prepared to handle the job"; "time...will be freed to enjoy"; "without irritation"; and, the ultimate trigger phrase, "Don't feel guilty".
    I've fallen into that "don't feel guilty" trap a number of times in my life. Until recently I've not questioned Maya Angelou's observation, popularized by Oprah Winfrey, that, "...if you'd known better, you'd've done better...". Yesterday, though, my niggling, usually dismissed doubts about this advice were finally caught in the "headlights" (thank you Alan Watts) that are my conscious attention. I think, at least in this nation, we need to popularize feelings of guilt: For our miserable record as caregivers to not only the elderly but to children; for our willingness to believe that "they'll understand," either when "they" are older or "they" are dead; for our refusal to acknowledge that, no, professional care in this country for the elderly is not "fine", in fact it's barely available at an "adequate" level; for thinking that "adequate" is "okay"; for not acknowledging that guilt is usually triggered when we have, indeed, known better but haven't acted out of higher motives; for thoughtlessly heaping feelings of guilt on our already overburdened caregivers who often aren't, themselves, the guilty party but are frantically trying to make amends for the guilty parties who are assuaging themselves with such phrases as, "don't feel guilty, if you'd known better you'd've done better, one of these days they'll understand".
    And what about the decision not to care for or visit the Ancient and Infirm unless you're sure the experience will be pleasant [initial discussion here]? This was the underlying reason for a family putting their matriarch in a nursing home for her final days, as cited by a fairly recent article in NYT entitled Will We Ever Arrive at the Good Death? in which the family was quoted as saying that in a residential hospice they could "just focus on loving her" without the hassle of trying to take care of her. Something I've learned about love since taking care of my mother: It is impossible to experience informed love, which is the deepest kind of love, without caring for someone when their chips are down. While I peripherally sympathize with the busy families of modern society finding the possibility of caring for an intense needs individual more than they can imagine bearing and fearing that this will somehow adversely affect their ability to love that individual, my experience of caring for my mother, as well as my lack of experience and, for that matter, awareness in caring for my father when he was ill-to-death, informs me that, of the two experiences, being my mother's caregiver, especially during the intense, messy, hellacious times, is directly responsible for my unusually expanded ability to love her and the rewards of such a love. In the face of this personal development I even, sometimes, wish I had been more available to my father as he wilted and my mother struggled to take care of him. Although he and I are at peace with one another and were at the time of his death, I can't help but continue to wonder what I would have discovered about him and how much more informed, therefore inclusive, my love for him would have become had I made myself available to him on his very difficult (both for him and my mother as his caregiver) final journey.
    I believe that every society's first conscious priority should be caregiving. I believe that caregiving is best done within a group of individuals (whether family or community) with close ties to one another that has the blessing and the full emotional and survival support of the society within which that group functions. I believe that when a society demeans caregiving by assigning it to one unsupported, undervalued, overburdened sub-group within that society the entire society is at risk for exactly the diseases of the soul from which U.S. society suffers: The inability to embrace life at all its stages; the inability to consider caregiving the fundament of everything we do as humans; the inability to understand, practice and support the detail and the gifts of superior caregiving; the inability to recognize that "individual responsibility" and "individual initiative" in a species as relentlessly and dependently social as ours are oxymorons.
    I believe it is time for all individuals in our society to acknowledge guilt, feel guilt, then respond to our higher social motives and do something, besides concocting feel-good Madison Avenue propaganda, to truly assuage the caregiver guilt to which we are all subject. Each of us already knows better. It's time for us to do better.

originally posted by kidneygurl: Sun Sep 18, 03:07:00 PM 2005

Right on Gail !
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