From: "Dr. D. Kossove" <doctordee@telkomsa.net>
To: "Cliff Munger" <cmunger@woh.rr.com>
Subject: Reflections for caregivers
Date: Monday, December 08, 2003 1:44 PM

Date:    Sun, 7 Dec 2003 22:21:13 -0500
From:    Cliff Munger <cmunger@WOH.RR.COM>
Subject: Reflections for caregivers

     I write today to those of you who are the care providers for a spouse,
child, parent, sister or brother who is an LMS survivor.  In looking back of
the eight years that Joyce and I dealt with this disease, I have come to
some realizations as a caregiver that I'd like to share with you.
     The first is that the journey in which you are engaged is one that you
are taking together.  When Joyce first received her diagnosis back in 1995,
we agreed that this was something that we were going to move through
together.  I saw the relief in her eyes when I told her that, and felt
relieved myself when she gave me a kiss and by that kiss agreed that neither
of us would be traveling alone.
     But I also realized very early that the major decisions regarding her
treatment needed to be made by her.  There were those times when, after we
had done all of the research, the tough choices fell on her shoulders.  The
best that I could do was affirm the choices that she made and give her my
support.  When, with a quiver in her voice and tears in her eyes, she said
that she had decided to have her leg amputated, all I could do was simply
give her a hug and say, Then lets do it.
     In the ensuing years, as we moved through all of the ups and downs of
being an LMS survivor, there was a real sense in which we each took our turn
at being the guide.  I was shining the light on the path, as I gathered
information that we could study together, and she was the one who was
telling me which turns we needed to take along the way.  And when at last
she decided this past April that she had journeyed as far as she was
physically and emotionally capable, with heavy heart I gave her a hug and
agreed that we would ask to be referred to hospice care.
     As you journey together, be prepared for feelings of remorse, guilt,
anger, and depression, and dont attempt to deny them or hide them.  Deal
with them.  Dont hesitate to get professional help if you need it.  And be
prepared to face those same kinds of feelings in the one for whom you are
caring without taking offense at the outbursts and the tears.  Because we
love one another  husbands and wives, parents and children, sisters and
brothers  we feel one anothers pain just as deeply as we feel one another
s joys.  And it is for that reason that we will have those moments and days
when we feel as if the world is against us and no one understands.
     But I say again, dont attempt to deny or hide your feelings.  Both of
us found that if we would share our feelings openly with each other, we
would come away from those exchanges feeling cleansed and whole again.  If
we cried together, the tears would help to wash away the hurt and the anger.
And when we laughed with each other, it helped us remember that we were
still together, and that realization provided the impetus to keep it that
way for as long as we could.  Of course, there were also those times when I
felt that I had to go off by myself and scream in anger and weep in sorrow,
and those times alone too brought me some sense of relief.  How much to
share and how much to handle by yourself is a personal choice that you will
need to make.  But take my advice  dont try to bury the feelings.  They
dont go away by themselves.
     Finally let me say that one of the most important tasks (and sometimes
most difficult) will be to try to provide opportunities to experience some
normalcy in the midst of all of the chaos.  I am heartened when I hear Tammy
talk of getting away and riding her horse, because I see in her the
determination to live every day to its fullest.  To provide the
opportunities to enjoy life, in spite of the struggle, is one of the
greatest gifts that you can give.
Cliff Munger


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