|Care for the Caretaker,
How Jim Backus' Wife Did It
An Upbeat Guide for Those Who Care for Others
It was November 1978, Jim had just been evaluated and the
doctors' suspicions were confirmed. It was Parkinson's disease.
Parkinson's disease? What was that? It was nowhere in my consciousness.
Jim had always done every benefit he was asked to do, but there
was never one for Parkinson's disease. There was no telethon for
it, and no pleas for donations ever came in the mail. So what was
this all about?
"Parkinson's cannot be diagnosed," they told me. "Only evaluated."
What did that mean? I was filled with a sense of unreality.
I couldn't believe this was happening. How often have you heard
those words? I was terrified. What was I supposed to do now? How
could I help? Then I became filled with dread. I was paralyzed with
fear. Scared stiff. Frightened to death. These are not clichés.
This was panic.
As I began to read, and hear, and live with it, I started
to understand. But the doctors could only give me so much help and
advice. There was no place where I could go to learn how to cope
with what was, progressively, being demanded of me. What I needed
was someone who had been there and done it. Someone to lead the
way. Someone to show me how to handle it. To shed a little light.
These were really uncharted waters. To whom could I turn? I felt
about five years old. What I really needed was a mommy, a big sister
someone! But there was no one out there.
Slowly I found that I could manage. Somehow, I was beginning
to swing it. I was lucky to have such great doctors, great friends,
the best help in every way. How would it be if I had less? I learned
through my doctors that there is readily available assistance for
anyone who needs it, for almost all of the problems that will appear.
But I would still have to discover how to cope by myself. And so
Jimmy has been gone since July 3rd, 1989, and I am just now
at the point where I have the perspective and the presence of mind
to look back in a way that will be constructive, and maybe helpful.
I will tell you everything as I remember it. Maybe these are some
of the problems that you are experiencing or are still to encounter.
My biggest challenge, and the chief contribution that I could make
that his physicians could not, was how to keep Jim's spirits up
and mine! How was I to retain my health and preserve my strength
through all this confusion and pressure?
I got all the textbooks and talked to doctors. From what I
could gather, I would have to find a whole new way of living my
life. So, little by little, throughout the almost eleven years of
caring for my husband, I found it. I found my own way in my own
way. Although you are no doubt doing the same thing, I hope that
my journey will make yours a little bit easier. You will stumble
and fall, as I did, but I will try to be your candle and shed a
little light for you, if at times only a tiny, flickering one.
Remember one thing: nothing I say can take the place of professional
guidance. Everything of a medical nature must be discussed with
your doctors. What I hope to do is to make your day-to-day living
easier for you. I can now offer you what I often wished I had
someone who had walked this path and had somehow made it through.
I can only tell you about my own personal experiences. I was
taking care of a beloved husband. You may be caring for a parent
or a wife or a daughter or a son under very different conditions.
But from whatever I have to offer, take what you need, modify it
if that's better for you, and perhaps let me be for you the big
sister I wished for.
Jim was a public face and, yes, that did in some ways make
it easier. In other ways, it was very difficult. Living a life in
the public eye has never been easy. His physical changes, seen by
all, added unimaginable layers to the pain. Just managing to get
a little much needed privacy was the trickiest of all. On the other
hand, you may have to cope with problems and dilemmas that are entirely
out of my scope. We all have our own unique perspective and our
shared humanity. I can only give you what I have learned.
I offer you this with hope and my very best wishes.