From: Jkr438@aol.com
Date: Mon Sep 23 2002 - 22:46:19 MDT
In a message dated 9/23/2002 10:57:38 PM Central Daylight Time,
joedees@bellsouth.net writes:
I freely admitted onlist that my mother suffers from late-stage
Alzheimer's disease, and that required me to be home caring for her
24/7. What you don't know is what kind of care is required; so I'll tell
you.
My 83-year-old mother also suffers from diabetes, arthritis, high
blood pressure, heart and circulation problems (she had a heart attack
and a stent installed 18 months ago), and kidney dysfunction (she has
24% kidney function). I have to give her more that twenty different
medicines daily. She is incontinent, cannot walk or feed herself, and,
since her teeth are gone and she cannot chew with dentures any more,
can only eat soft foods. The diabetes and Alzheimer's conspire to kill
her appetite; thus she can only be fed twice a day, 12 hours apart, but
due to the kidney problems, she must drink juices constantly to keep
toxins flushed out, She caanot consume sugar (due to her diabetes),
salt (due to her high blood presure) or animal products (since her
kidnys do not handle complex proteins well).
My twice-daily routine with her is (roughly) as follows: I grab a
Glucerna (a vitamin-rich diabetes drink) from the fridge, a banana, a
napkin and a straw; then I prepare her main course (rice grits in the
morning, and alternating between beans and sweet potatoes (both of
which I must mash) in the evening). It is very important that she
consume both rice and beans, as that way she obtains all her essential
amino acids without eating meat products. After microwaving and
otherwise preparing her main course, I place these items on a table in
her bedroom. I roll her wheelchair into the bedroom, covering the
footpedals with towels so they do not damage her legs. I then roll her
feet over the side of the bed, have her grab me around the neck with
her arms, lift her up, and guide her into the wheelchair (into which I
have placed a towel, sincde her clothes are wet), so she can eat
vertically, and not choke or make a mess. I then feed her first her main
course, then her banana for dessert (for the postassium), giving her
periodic sips of the Glucerna (and, if she finishes it early, orange, white
grape, or cranberry juice) so she can wash her food down. Once her
meal is concluded, I bring her her medicine and her buttermilk with
which to wash it down (because buttermilk is viscous, and clings to the
tablets and capsules). Then I change her bed, and roll her to the
bathroom. I then have her grab me about the neck once again, and
walk her backwards into the bathroom, having her grab the sink (into
which I've placed a pillow so she won't fall over and bump her head
against the faucet) with one hand and the towel rack with the other to
steady herself while I drop her sweatpants and pad. I then remove her
sweatshirt, guide her onto the toilet, and place her shirt, pants,
bedclothes and wheelchair towel into the washing machine. After
bathing her off and placing a clean shirt on her, I give her some privacy
for about ten minutes. when I return, I first wipe her ass and flush the
commode, then pull her fresh pad and pants on (backwards, so when I
tie them she cannot figure our how to untie them). Next I give her two
squirts of her 'wheezy medicine' (an aerosol breather) and a dose of
Milk of Magnesia, so her digestive tract will not lock up. Then I swivel
her towards the sink, and pick her up, instructing her ot once again grab
the sink and towel rack. I then pull up first her pad, then her pants, and
tie them, after which I have her garb me around the neck with both arms
once again, and guide her backwards into her wheelchair. I then ask
her if she wants to watch TV or go back to bed. I will spare you the
deatails of what I have to do whichever she chooses.
Alzheimer's disease is characterized by massive memory loss.
She sometimes calls me by my father's name, and sometimes by her
father's name, but she recognizes me as her caretaker. She forgets
that she is in her own home (even though she has lived there for more
than 33 years), and she currently has a cast on one leg, because she
forgot that she couldn't walk, tried to, rolled her ankle, and broke it in
two places.
Nevertheless, she is not crazy. She answers questions and
obeys instructions reasonably, and when I told her that perhaps I was
saxcrificing my life to her care because i loved her too much, she
answered that one can never love too much. Amazingly, i read later (I
forget where) that another Alzheimer's patient made a similar comment
to her caretaker.
Should I put her in a rest home? Mu mother's older sister (by
less than two years), who was put in a rest home, died a few months
ago; my uncle, upon visiting her, found her dehydeated and in a coma,
with food lodged in her throat. She never recovered; i was a pallbearer
at her funeral. Less than 100 miles north of here, a rest home had
installed a feeding tube in a geriatric patient so that they would not
have to go to the trouble of feeding him; it was discovered that he had a
maggot infestation at the tube entry site, and that they had made their
way into his entrails. I promised my father on his deathbed (I took care
of him for years, and he died Sept. 6th, 1999) that I would alllow my
mother to spend her remaiming time at home, as he had. You cannot
take a promise back from a dead man, and I intend to keep it.
[Jake] I appreciate how much you are going through. I personally did some
similar things for both of my parents-in-law. On some level my
wife-of-the-time was simply incapable at times to do the same herself. I
guess in a way it worked out well since I seemed to have more empathy for her
parents than she herself was capable at the time, and so whenever the things
simply got to much for her to bear, there I was in all my empathic capacity
to pick up the loose ends and carry on for whatever the human race, my
marriage, and the people I loved at the time needed of me. I really feel for
you, Joe, because you will simply never get the thanks you probably really
deserve for your efforts. I know this, because once they were gone, I was
rewarded with an extremely unfair divorce settlement from my wife in the end,
and very little understanding from my own family as to why I had put so much
of myself into this obviously doomed drama. But then, I guess I didn't do
these things for recognition, but for what this two individuals had meant for
me directly. And for that I offer no apology to family, ex-spouse, or anyone
else. I know full well what I gained, and what everyone else lost in the
process. If they only knew perhaps the rest of the story would be different,
but since they don't the rest of the story, except for my part, has little
interest to me.
[Joe] When Hermit characterized my mother as a "drooling"
"maternal nutcase", he was partially ignorant of the volatility of the
buttons he was pushing out of malignant spite.
[Jake] Partially? Probably closer to wholly. But regardless, there is no
point in trying to make him understand. Let it pass and take what you can
out of your own experiences.
[Joe] Nevertheless, his remarks were vile, vicious, callous, cruel and
unfeeling, and should not have been uttered by any human being with a modicum
of respect for
themselves or others.
[Jake] respect requires understanding, and for those that do not understand
there is nothing you can offer. Cruelty requires far more understanding of
the situation. And regardless whatever petty responses Hermit could offer,
it has or should have no bearing on what you take away from the people and
the situation at hand. Hermit, and indeed I myself, are effectively nothing
but a few voices in the lonely terrain of cyberspace who know little or
nothing of you and your loves.
For the sake of those who have meant far more to you, please don't make us
into anything greater than we are.
Love,
-Jake
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