Devon Miller-Duggan Blogging in the New Year on Eldercare, Resolutions, and caregiving her Mama

Eldercare Update: It’s been a bit since I checked in about The Mama. We got
through another Christmas. I did not give in to her silent (how can this stuff
be so loud in my head without coming out of her mouth?????)) plea to be taken to
Nordstrom to shop and feel like a princess (she does not understand that I have
to account to Medicaid for any checks over $200., and paying a credit card bill
from Nordstrom would most certainly exceed that and force me to lie through my
teeth about the money being spent on other people—which is forbidden—and I am
not inclined to mess with the government on this one). Also, I was grading until
the 22nd.

I did figure out some presents to give her (this is a pig—she needs almost
nothing, and only wants to be taken to Europe or out to dinner—one is
impossible, the other conflicts with her aides so happens fairly rarely,
especially since she’s super-wobbly by 5). But we managed. When, on the 20th,
she came upstairs to ask whether we could “go out and have dessert for dinner,”
instead of reminding her that she’s missing most of her pancreas and I have T2
diabetes, I explained that I was in the middle of doing her Christmas shopping
(a complicated business—well not really, we basically pay for her gifts to other
family members) and she informed me that this was the last year I’d have to do
that. Nope, she did not mean that she wouldn’t be here next year, she meant, as
she explained more or less breezily, she’d be hiring a car to take her to
Nordstrom next year. And presumably an entourage to handle packages and sign her
credit card slips for her, assuming I let her have the cards…

This morning she came upstairs while I was eating breakfast (her new habit—that,
and coming out of her apartment just down the stairs from the dining table and
waving at me several times, blowing kisses, which is not as charming as it
sounds) and informed me that she was going to walk across the street and get a
cup of coffee. First, we live in a typical subdivision, so “across the street”
is not anywhere she can get a cup of coffee in any sense she meant it. Second,
she hasn’t been able to drink regular coffee for decades. For reasons no one
understands, it makes her nauseous. We blame it on the MS. The one good thing
about MS is that you can explain any mystery quirks and symptoms on it. Espresso
doesn’t bother her (like I said, mystery), and she has one of those ridiculous
Nespresso machines in her kitchen (she can’t use it—she’s not allowed to plug
anything in any more, and can’t follow the instructions I laminated for her
aides, anyway). So I got up and went down and made her an espresso. When I was
heading back upstairs to finish my breakfast, she announced that “you may talk
to me, if you want.” I explained that I wanted to finish breakfast and went back
upstairs. I need to get a recycling bag from Nespresso so I can quit feeling
guilty about the machine. These departures from reality have been happening more

I go downstairs several times a day (more lately, since her first cataract
surgery, I’ve been on a complicated schedule of delivering the prescription
eyedrops required because her aides can’t do prescriptions—thank God the surgeon
sent a chart home with her. Apparently I’m not the only human befuddled by the
schedule of 3 prescriptions given on a schedule that amounts to 7 separate
occasions daily. 2nd cataract surgery in the first week of 2016. Then I’ll only
have another 6 weeks of eyedrop servitude…) I can’t say “It’s my job to take
care of you, not my job to entertain you” not just because it would be cruel,
but because she wouldn’t have the slightest idea what I meant.

She is really only concerned with when she’ll see the great-grands again and
being taken pretty much anywhere. Since I’ve taken her to 12 doctor’s
appointments in the past three months and my husband has taken her to two, we
kind of feel like having taken her out to meals 2-3 times in the same time
period and out last night to look at some of the houses listed by the local
paper as having particularly nifty light displays covers us on the “taking out”

The tangle of guilt, love, loathing, fury, frustration, grief, concern,
heartbreak, and stress the whole shebang wraps me in is tiring. I swear I feel
all of that all the time. That’s a lot of “feels” for any given breath to hold
or release.

The worst of the newish stuff is that she frets like crazy whenever I’m not in
the house. The aides tell me she says “It’s not like Devi (a name she hasn’t
called me in decades) not to call.” That was true when I was 16 and concerned
with the appearance of good behavior. It is not true when I am 61 and going to
see the new “Star Wars” movie and stopping at the grocery store on the way home.
As much confusion of emotion as I’m living with, she’s living with an even
weirder confusion of time in which I’m between 16 and 30 and still super, super
close to her; my husband exists in a funny untimed reality; the aides are a
confusion and a fret about the future of her next meal; the grand-daughters are
somehow all the years of their lives all the time; the great-grands are the
present, everyone else seems to have disappeared from her awareness except her
sister and her cousin Arlene, whose death she has not integrated. Between all
that and the seriously Escher-ian geography she inhabits, it’s no wonder she so
often points at her head and twirls her finger in the universal sign for
“crazy.” Which is, of course, another thing that’s driving me nuts-er every time
she does it. See above for the list of responses.

Here’s what I want for 2016:
1. I want no one else to lovingly and caringly tell me what a good daughter I
am. I know I am. And I know that I am not. Every time someone says that nice
thing to me, it makes me literally dizzy with the flood of all those emotions,
but for some reason, in quadruple doses. I’m afraid I will actually throw up one
of these times. I guess that’s what you call a “trigger.”
2. I want no one else to lovingly and generously tell me how sweet my mother is.
I know she is. She’s a trooper. She’s amazing. She’s a triumph. She’s also a
demented 3-year old vampire who is kind of sucking the life out of my life. So
unless you are prepared to also discuss the fact that I pray for her to get
pneumonia or flu (yes, I got her both vaccines), let’s not talk about how sweet
she is. The “sweet” is still in there along with the “smart,” but their
appearances inside the family (unless you’re under 7) are increasingly reserved
for non-family members. The Mama I live with mostly doesn’t want things from me,
she just wants me, body and soul, 24/7, preferably accompanied by my
grandchildren and tooling around cities full of cobblestones she can’t walk on
in wheelchairs it hurts the hell out of my increasingly arthritic hands to push.

3. We’ll skip this one.

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