Recently, I read an article
on caregiver emotions, and thought the idea worth expanding on.
Having been a caregiver for ten years, I was familiar with all
the emotions featured in the article, as well as several others.
Emotions can run high for
caregivers, and I suppose that if you asked what a caregiver was
feeling, guilt could easily be at the top of the list. Even good
caregivers feel guilt no matter how unfounded. Some of us just have
this little guilt complex that travels rampantly throughout our
brains.
I don’t know about you,
but I can manage to feel guilty over trivial matters. Some of the
guilt associated with caregivers can be circumstances that seem
entirely beyond our control. One of the guilt generators can be how a
caregiver can be pulled in a lot of different directions at one
time. I think this is especially true when the person with dementia
is young. I know that I was conflicted with work and my
responsibilities to care for Jim. Since I was only in my mid-forties
when Jim began to need someone to watch over him, I didn’t think
that quitting my job was an option. That is not the decision every
caregiver makes, and I could see where both options could cause some
feelings of guilt.
Had I taken a leave of
absence, it would have lasted for several years because Alzheimer’s
develops over time and can last for ten to twenty years. There were
several advantages to keeping my job, one of which was to keep my
health insurance. With good insurance, we were able to afford the
diagnostic tests necessary to determine the type of disease and scope
of the damage to Jim’s brain. The insurance meant we could afford
the expensive medication. I was also able to continue making a living
that paid the bills and avoided the stress and strain involved with
having to make hard choices of medical care or paying the electric
bill. Another advantage of working is that although Jim was never off
my mind, I did have something apart from caregiving to fill my days.
I was able to interact with other people at a time that Jim became
silent and no longer carried on a conversation.
The downside was that I
scrambled to find someone to watch him during the day. Between
family, professional caregivers, my day off each week, and vacation,
we managed to have someone with him at all times. It wasn’t easy,
and had it not been for a flexible work schedule, it would have been
an impossible situation. I still managed to feel guilty at times
because I wasn’t there for him when he needed me, but in
retrospect, I think it was the right decision for me.
Still, since I used all the
caregivers during the workday, it meant that nights and weekends were
my turn. Sometimes, Jim would be stubborn and uncooperative, and
occasionally, I would lose patience. I beat myself up for those times
when I blamed him rather than the disease. One time, I yelled at him
and just about the time I felt totally like a worm, he started
laughing at me over the colorful language I had used. We wound up
having a good laugh over it, and it makes a happy memory rather than
a guilt-ridden moment.
I think one of the most
common reasons caregivers feel guilt is the nursing home decision. No
matter how necessary, or thoughtful, the decision, it tends to make a
caregiver feel that she has let down the person she loves. It is
especially difficult when the family has promised they will never put
their loved one in a nursing home. Caregiver feel like they have
broken a promise when making the only decision that makes sense in
the situation.
The nursing home decision
was one I struggled with and put off as long as possible. Jim only
slept a few hours a night and I was constantly exhausted. He began to
wander off and no matter how careful we were, it only took a split
second for him to disappear. It finally got to the point that we
needed to put him in a safe place before he wandered off and we
couldn’t find him. In that case, there would be no nursing home
decision necessary. In my opinion, that wasn’t an option.
Unbridled guilt isn’t good
for anyone. To help take control of your attitude, you need to have a
reality check. If you are doing your best as a caregiver, and as a
person, that is all you can do. There is a huge gap between reality
and perfection. You don’t need to be the best caregiver in the
world, you just need to be the best caregiver you can be. In the end,
you need to make tough decisions that are not only best for your
loved one, but also for you, the caregiver.
Copyright (c) May 2013 by
L.S. Fisher
http://earlyonset.blogspot.com
Good thoughts, Linda. I have a wonderful volunteer caregiver that is our backyard neighbor. He is with my husband for taking of pills in the morning when I leave the house to substitute teach and he also comes in to prepare lunch. Before that, I could come home and there would be no pills, no breakfast and no lunch, even though I might have called home and reminded my husband who was diagnosed four and a half years ago.
ReplyDeleteIt's a long road and we caregivers take note of your experiences and I enjoy the blogging support that I have. Hubby has no idea I have been blogging these four and a half years.
Hugs,
Carol
Carol, Being a caregiver is a challenge, for sure. Glad that you blog! Hugs, Linda
ReplyDeleteA little sacrifice will not hurt. The gift of time is the best you can share to anyone. Though being a caregiver is physically challenging and mentally draining at times, still, it is one of the most rewarding job that one can do. Do it with love, and you'll never get tired of it.
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