I am very well prepared for material problems.
Whenever I believe I see something unpleasant about to happen, I look for a potential solution. So, because Jackie had a difficult, essentially impossible time with our too high and steep front steps and wouldn’t go out of the house, I thought perhaps an easier set of steps would lure her into the world.
Now we have very lovely, new, quite expensive steps and walk; she went out once to look at them and hasn’t ventured out since.
I have stockpiled six months worth of bed pads, enough pull-ups to keep the entire subdivision dry, barrier ointment, deodorizing spray and lots of every possible thing I can think of.
All of this to try to convince myself that I am somehow taking care of her; as a man who has spent his life solving problems and being ready, this is my response. I see a problem and try to fix it.
In reality, nothing I’m doing is much more than cosmetic, I have no control over the progress of her invisible and persistent disease.
That hopelessness stares me in the face every time I see a new diminished behavior. I am always playing catch-up and never do.
We all know the Kubler-Ross stages of belief – denial, anger, bargaining, depression and acceptance and most of us realize that we don’t go through these in any order or just once.
In my experience, those of us with ambiguous grief, care givers of people with degenerative diseases experience several more ‘stages’.
Frustration and helplessness – we were successful at ‘fixing’ life’s calamities before, but we are totally unable to do anything now against this decay.
False Hope – the ambiguity of the diagnosis means that every time out LO shows a sign outside the ‘normal’ category we hope that the doctors were wrong, he or she has something else or is miraculously cured.
Bewilderment – where are we, when will we get there, how bumpy is the road, how steep are the declines? These are the first question care givers ask, they want to know all of this but there are no answers. You and your loved one are going down a mountain in deepest night; the length of the journey and even the very next step are unpredictable, unknowable; the only certain thing is that you are going down into the dark.
Envy – all around me, others go on with their lives, go out to dinner, go to the theater, travel. and we cannot, do not
Shame – sometimes, when things are really bad, when I end up shampooing carpets at midnight or trying unsuccessfully to get my loved one to do something that she obdurately refuses to do, I get angry at her and yell. Sometimes, when things are very, very bad, just for a moment I wish that this journey was over.
A moment later I am ashamed and become calm and loving again, willing to do whatever it takes, as long as it takes, just so that she is here.
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