Madelyn Kubin was recovering from open-heart surgery. She
had osteoporosis, macular degeneration, restless leg
syndrome, and severe hearing loss. She lived on a farm six
miles from a town of 10,000 people in the middle of Kansas,
and she had very little money. And then, just a few months
after Madelyn's 70th birthday, her husband suffered a
debilitating stroke and she became his caregiver.
For the next six years Madelyn maintained her contact with
the outside world, and perhaps her sanity, by writing
letters in which she disengaged her emotional monitor and
wrote openly to her daughter about what she was going
through and how she felt about it.
There are many lessons for all caregivers in Madelyn's
experiences. Here are a few, illustrated with excerpts from
the book Letters from Madelyn, Chronicles of a Caregiver:
Claim Some Time for Yourself
Set aside some time for yourself each day to do something
you enjoy. Read, meditate, or go for a walk. Let your loved
one know this is YOUR time, and you do not want to be
disturbed.
Four months after her husband's first stroke, Madelyn wrote:
"The one place where I don't give in to Quentin is when I
want to sit up and read at night. He never wanted me to do
that when he was well. Now he says he can't sleep if the
light is on, and the noise of the turning pages bothers
him. He never has any trouble sleeping in the daytime.
The dishwasher can be going, the TV can be on and the
sweeper running and he can sleep without any problem. I
told him last night to not worry if he couldn't sleep while
I was reading, because he wouldn't have any trouble when
it's daytime and I'm working. I need some time for myself,
and if he can't sleep, he will just have to stay awake."
Get the Right Equipment
Installing the right equipment will enable your loved one
to maintain some independence, and it will protect you from
unneeded physical strain.
In this letter Madelyn describes some simple adjustments
that made a big difference:
"I came up with an idea in the middle of the night that
Quentin approves of. Our bathroom door opens back toward
the toilet stool, and it is so hard for him to get around
it. I suggested we take the door off and have it open the
other way.
By changing the way the door swings, Quentin can use his
walker to get into the bathroom. As it is now, he has to
use the cane, and that is not very satisfactory when he is
so wobbly.
I'm also going to buy a plastic pad like they use under
office chairs. That should make it a lot easier for him to
scoot his chair up to and away from the dining room table.
It will also make cleaning up spills a lot easier.
Get Out in Nature
Caregivers spend a lot of time cleaning up messes and
performing distasteful tasks. Getting out in nature, even
if it is only in your own backyard, can relieve stress and
provide a pleasant diversion.
Madelyn wrote:
"This morning I looked out and saw a Blue Jay taking his
bath, and before long there was a beautiful big red bird.
He took a long time deciding if he wanted to get in the
water or not, but he finally took a nice leisurely bath.
When I looked out and saw him, I almost gasped. We will
probably get a lot of interesting birds during the
migration season. I'm putting out fresh water for them
morning and night. It makes the kitchen work more
interesting."
Madelyn Kubin survived her caregiving experience by taking
care of herself physically, mentally, and spiritually.
Although there is nothing that can make the job of
caregiving easy, there are resources and support groups
that can help a person cope with it.
----------------------------------------------------
Resource box:
Elaine K. Sanchez, author of the tender, gritty, and
uproariously funny book, Letters from Madelyn, Chronicles
of a Caregiver speaks to audiences across the country about
finding hope and humor in aging, illness, and long-term
caregiving. For a free Caregiver's Survival Guide, visit
her website at http://www.LaineyPublishing.com
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