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Caregiver Network News welc=
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This was submitted
by Jerry E. Hess of Asheville:
The [following] artic=
le
Whooping Cough, Alzheimer's and the Fickle Finger of Fate needs to =
be
considered as a response to an article in the February issue of MemoryCare's Caregiver Network News newslette=
r. The
first part of said article makes reference to a sense of loss regar=
ding
a spouse's dementia. I consider this to be the negative half of the
article. It talks about a Carespouse be=
ing
robbed of sharing daily experiences, of losing one's best friend, l=
ife
companion and confidante, and of being married but no longer having=
a
marriage. These are the excerpts to which I take specific exception=
in
my article.
However, I would like=
to
point out several phrases contained in the second part of the MemoryCare article, which I consider the posi=
tive
half of the article, that also widen the gap between the person with
the disease and the share partner. Terms such as "....in there
somewhere," "....for a while longer" and "....if
only for a short time" all portray a sense of pending doom. Su=
ch
terms may or may not be understood by the person with Alzheimer's
(hopefully not), but they are clearly intended to be understood by,=
and
to stroke the share partner. Such words can only underscore a share
partner's sense of having a doleful and woebegone lot in life. To w=
hat
purpose?
The concept of there
being a class of people called "Care GIVERS" means, of
necessity, that there is also a class of "Care GETTERS." =
How
demeaning is that? Bad enough the individual with the disease has to
recognize that she or he is losing their mind without adding the on=
us
of becoming a burden. The "system" is calculated to make
things worse for the person with the affliction, for the sake of
stroking the other person in an effort to keep them on the job.
There is a song from =
my
frivolous youth, or perhaps even before my own youth, which contains
the line "....accentuate the positive." I find that it is=
far
better for both my spouse and myself to =
be
positive about what we do have, and not spend too much time worrying
about what we do not.
Whooping
Cough, Alzheimer's and the Fickle Finger of Fate
When I was a young bo=
y I
liked baseball players Duke Snider and Clint H=
artung.
Many people knew the "Duke." He played for the Brooklyn
Dodgers and was one of the quintessential "Boys of Summer.&quo=
t;
Not so many folks ever heard of Clint, who played centerfield for t=
he
Minneapolis Millers, a minor league farm club of the New York Giant=
s. I
liked them both about the same. I also liked John Dennison, Mrs. Garritz and Flash Gordon, also about the same=
.
But I was content bei=
ng
who I was. I didn't want to actually be Duke or John, not even to be
like Duke or John. I liked them, respected them, but was very happy
playing with the cards I had been dealt.
As I have lived my li=
fe
there have been many times when I saw someone or something I liked,=
and
when it was some"thin=
g," and I could reasonably attain or obtai=
n that
thing, I went after it. That included such "things" as an
education, an airplane, sex, and a better backhand. It also included
finding a good life's partner. With this latter effort I struggled a
bit, but in due course found a wonderful mate.
Life's observations a=
nd
experiences didn't change. Now there were two of us finding things =
and
people we liked, things we wanted, people we admired. But I never o=
nce
felt any desire to be anything or anybody other than myself. I was =
far
from perfect and I recognized that fact. But I was content.
Then my partner and I=
got
old. We didn't intend for it to happen so fast, but, alas, it did.
However, as Douglas MacArthur once said, "Youth is a state of
mind, not a time of life." So we got old, but thought young, o=
r at
least younger. We continued to be content with =
who
we were. I have a sticker on my Harley helmet which reads, "I =
may
be used, but I ain't used up."&nbs=
p;
Then one day my partn=
er
started noticing that she was becoming increasingly forgetful. We w=
ent
to a neurologist who told us she had MCI, mild cognitive impairment.
MCI became Alzheimer's disease. Was it "early onset" or n=
ot?
Who cares? Do we wish we didn't have the damned disease? You can bet
your hat on it cowboy. But we have it. We can't be the Duke, we can=
't
be young and we can't wave a magic wand and get rid of the dementia=
.
A lot gets written and discussed about "caregivers" and
"carespouses," and the tribul=
ations
these folks experience in juxtaposition to the individual with
dementia. This focus is well intended, and there really isn't any
"right" or "wrong" way to analyze a particular
situation. I can't tell others to feel like me, or to look at their=
own
lives through my eyes, anymore than I c=
ould
or would consider doing the reverse. However, there is definitely
another way to look at living life with Alzheimer's, other than the=
way
most commonly considered, and other than lamenting the fickle finge=
r of
fate that has touched the lives of those involved.
People with whooping
cough or cancer undoubtedly wish they didn't have the affliction. T=
heir
loved ones undoubtedly feel the same. Much better to have no
afflictions, to be able to hit the ball like Clint Hartung
or to grow old more slowly, and with a lot of assets. Unfortunately
life doesn't work exactly like that. We prepare as best we can for =
the
next at bat, for the big dance, for the upcoming interview, for the
size 32 waist and for the low hard ball in the backhand corner, but
"things" ain't always going t=
o work
out the way we planned or the way we wanted. So be content with the=
way
they do work out. If you've filled each minute with sixty seconds w=
orth
of distance run (I think that may have been Kipling) there isn't mu=
ch
else you can do anyway.
Is there grief and
loneliness in losing my life's companion? Hell no. I haven't lost my
life's companion. She has changed, she's different, but she's still
here and I'm damned happy and damned lucky that she is. Am I still
married, but without a marriage? Absolutely not. I'm still married,
period. My relationship with my partner has changed, and probably w=
ill
continue to change, but I am still married, and I do still have bot=
h a
relationship and a marriage that I very much enjoy. How many old fo=
lks
have the same marriage they had when they were younger? Not many wo=
uld
be my guess. Life changes and relationships change, with or without
Alzheimer's.
Does having Alzheimer=
's
rob my partner and myself of sharing dai=
ly
experiences, or rob her of savoring the good things about daily life
that everyone else enjoys? Of course not! If anything my spouse and=
I
now share more daily experiences, not fewer. While it may not be
exactly romantic, there is something warm and comfortable about hel=
ping
my lady dry off after her morning shower, something intimate about
shaving her legs or helping her put on a brassiere or a sweater. We
have a gajillion da=
ily
experiences. They are undoubtedly different than they would =
have
been without Alzheimer's, but that doesn't make them bad, or even
worse, just different. Besides which, they are what they are. I can=
't
be Flash Gordon.
As far as robbing my
spouse of experiences everyone else enjoys, I am reminded of a less=
on I
learned early in life. I have a brother who is blind and mentally
retarded. He lives in a group home with 14 other similarly situated=
men
and women. Jim has never had a romance or a sexual encounter, never=
had
his own home, never drove a car, never had a "real" job a=
nd
never did most of the things the rest of us do on a daily basis.
However, when I go into Jim's group home I find a bunch of the happ=
iest
people you ever want to meet. To a person they are warm and friendl=
y,
they care for each other, for themselves, and for you. They don't k=
now
what they're "missing," or even that they're missing anyt=
hing
at all. They don't know that we feel bad for them because they can'=
t do
the things that we find "better." And don't tell Jim his =
job
at the Opportunity Workshop wasn't "real."
Have I lost, or am I
losing, my best friend and confidante? Not by a long shot. Friendsh=
ips
come in all sizes and flavors. Some of my closest friends I haven't
seen for years, some I will never see again. But friends we are, and
friends we will remain, whatever the morrow may bring. Marriage is =
the
only friendship any of us have that is "required" to surv=
ive
24/7/365/ad infinitum. The only way that works is for that particul=
ar
friendship to "evolve." Evolution means change. Our
friendships with our spouses are going to change, with or without
whooping cough or Alzheimer's disease. If the disease causes most of
those changes to be unusual and different than we might have expect=
ed
or might have preferred, get over it. Take the cards you've been de=
alt
and play the hand. Enjoy the game, if not the result.
I really do like the =
term
"New Normal." Living with Alzheimer's is definitely that.=
However,
let's not equate "new" or "different" with
"bad." My bride and I have been fighting this battle for
almost seven years. We'll continue to fight it as long as we can. As
she becomes less and less aware of the fact that she is actually in=
the
fight, as she forgets more names, more words and more daily skills,=
the
conditions of our love and our relationship will continue to evolve.
But it's not the evolution that's important, it's the continuation.=
My
wife will be my bride, my confidante, and my life's companion so lo=
ng
as there is a life to be companion to.
<=
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Your
comments are welcome.
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