My
brother Donnie’s memorial service Friday was a reflection of his life and provided
closure for our family. Our family pulled together to plan a tribute that
combined displays of personal items and pictures with personal stories, often
humorous.
Donnie had suffered from multiple strokes brought on by diabetes. Donnie had been in a
nursing home for four years. During that time, his quality of life degenerated.
He was often cantankerous and always hard to understand. The strokes had
affected his speech and it was common to have to guess what he was saying—often
wrong—or to ask him to repeat himself.
Although
a different cause, in many ways, Donnie reminded me so much of Jim’s dementia
journey. They both became dependent on others to take care of them as their
conditions worsened. Donnie and Jim both had mothers who remained committed to
caring for them. My mother-in-law didn’t miss many days looking after Jim, and
my mother not only looked after Donnie, but also moved to town so that she was
within a few blocks away from the nursing home.
A
serious illness is hard on the entire family, but nothing can compare to a
mother’s heartbreak of watching a child, no matter how old, develop a terminal
condition. It just isn’t in the natural order of life for parents to outlive
children. From the time a child is born, parents see that child as their legacy
and someone they can love and cherish for the remainder of their lives.
Whether
a loved one has Alzheimer’s, strokes, diabetes, cancer, or hundreds of other
conditions, the grief is ongoing for family members. When you see someone
fighting for life, or accepting that death is the only outcome, the grieving
process begins long before his or her final breath. Grief in these
circumstances is ambiguous, without an end in sight. Throughout the course of
the illness, there is no closure, and if your loved one is unhappy or in pain, that
distress becomes a part of your every waking moment.
Family
members and caregivers often feel guilty that they are able to enjoy many of
the things their loved one can’t. Yet, complete happiness or enjoyment is illusive
when always in the back of your mind is the thought that you need to provide a
level of companionship and comfort for your loved one who is in the nursing
home, hospital, or perhaps still at home.
If
you are a primary caregiver, your loved one is on your mind when you wake up in
the morning and the last thing that crosses your mind when you go to sleep at
night. You are constantly second guessing yourself as to whether you have done
everything possible to make life as comfortable and fulfilling as you can. You
may have left your loved one in the care of professionals, but you know they
have others to tend to and you are afraid that something will fall through the
cracks.
I
know that after Jim wasn’t able to feed himself, or even get a drink of water on
his own, it was something I worried about constantly. It eased my mind to drop
by the nursing home each night after work and on weekends to make sure he was
okay. If I wasn’t able to go, I knew that other family members would check on
him.
I
know that my mom will now be at loose ends and find herself feeling like she is
forgetting something as she goes through this transition from being a primary
caregiver to leading an ordinary life. It will be months before life returns to
normal.
Caregiving
is an all-consuming condition that affects body, mind, and spirit. It is a
labor of love that becomes a way of life.
Copyright
© December 2012 by L.S. Fisher
http://earlyonset.blogspot.com
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