Fear … When Clare started sliding down further and further down that “black hole,” I started to worry about what my life would be like once she no longer knew who I was. And I was afraid of what my life would be like after Clare would no longer be in this world with me. I started missing her more and more as she slowly but surely started slipping through my fingers.
How would I feel when Clare would no longer know that I was
her husband? How would I feel when I could
no longer be with her … to talk to her, to hold her hands, to hug her, to kiss
her … even when she didn’t know who I was?
How would I feel when I would be totally alone … no longer part of our
“we” in even the slightest way?
I didn’t want that day to ever come … I dreaded that
day. Clare was my world. But that day was surely coming … and much,
much sooner than I had foreseen.
Preparing for the death of your loved one, sadly, is the only
certain thing about AD … the only major disease with no effective treatment and
with zero survivors. Some with AD may
live for only a year or two after diagnosis.
Some may live for another decade or two.
But … the reality is that death is the outcome once an AD diagnosis is
made.
I also started worrying more about what AD would do to Clare
once she reached the bottom of that black hole.
She was already so weak. She was
already unable to say more than a few words during each of our visits together.
I could not even imagine what she must have been feeling or
thinking after she lost her ability to communicate, walk, feed herself, or control
her bodily functions. Now that she was
having to deal more and more with all of the body ravages that come with the end
stages of AD, what could Clare have possibly been thinking?
As I began to worry more about what AD would do to me as I
watched her slowly die, knowing I was totally helpless to help her as she
slipped further and further away, fears about what my own life would be like after
her death increased dramatically.
I began to fear that day when I would have to go from being
married, albeit also already feeling very much widowed, to actually being completely
widowed … without having Clare in my life at all in any way, shape, or
form. I dreaded that day.
Fear … The further down that black hole she went, the
more I came to fear that day when I would no longer be able to feel part of a
“we” anymore. And that is when I, too,
started going down a black hole of my own.
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Gratitude … I am grateful for many things in my
life. Clare and I had 42 years of a
wonderful marriage before her Alzheimer’s diagnosis, years filled with
tremendous joy and happiness. We watched
our children grow up, marry, and have their own children. We had so much fun and enjoyment. I am
grateful for all of this.
I am also grateful for the careers we both had, providing
much enjoyment and happiness for so many years.
And when we decided to retire, we traveled widely and could not have
asked for more. We loved our “new life”
together as young retirees.
Even after Clare’s early onset AD diagnosis, we still
enjoyed much happiness together. And even
after I had to place Clare in an assisted living facility, I was grateful for
each and every moment of happiness we enjoyed together during my daily visits.
I remember wondering if we would ever get to celebrate our
50th anniversary, our “golden” anniversary. But as she began descending deeper and faster
into that black hole, I doubted whether Clare would still be alive by then. And, I wondered, if she did make it to our 50th,
would she know who I was?
Clare didn’t make it to our golden anniversary. She passed away in her sleep 14 months before
that date.
One learns quickly when caring for a loved one with AD that
one cannot be so bold as to predict what is going to happen 3 years in
advance. Trying to predict how one with
AD will be in just a few months in advance is difficult to predict, let alone 3
years. Alzheimer’s robs you not only of
your present, but also robs you of your future.
Gratitude … an emotion that only goes so far.
