As she presents the lessons in
"Caregiving Relationships: People Who Care for Adults" in family
life programming around the state, Seguin recommends coping
strategies that enable caregivers to face fear and anger, make
frustration work for them, and use guilt constructively
The first feelings to surface,
said Seguin, are usually frustration and sadness. "I'm disappointed
that this is the way we're spending our retirement," said Bruce, who
cares for his wife, who has Alzheimer's disease. "Instead of going
on cruises, we make trips to the bathroom. We have five acres, and I
can't leave her alone, so I just sit and watch the grass grow and
the garden go to heck."
Caregivers also suffer from
feelings of ambiguous loss. These losses are vague, but they are
very real, and there are no rituals, such as funerals, to help
families come to terms with their grief. The caregiver's partner is
still with them, but not really. "I'm really sad that I've just lost
her as an intelligent, fun-loving person," Bruce said.
"My husband will go to the
store with me or even attend church, but there's not an awful lot of
satisfaction when your husband's sitting next to you and his eyes
are closed and he's just nodding," said Joan, another Alzheimer's
"What bothers me the most is
that we can't communicate," she added. "I can't understand the words
he strings together. And, more and more, I'm taking on the things he
used to do for himself. He attempts to shower, but he won't use the
soap or washcloth, so I had to take that over."
Bruce added, "Fortunately, this
doesn't come on all at once. My wife will throw me a little curve,
and I'll adapt."
Nevertheless, Bruce feels a bit
apprehensive about the future. "Both of my children are coming home
next month. We'll have a family consultation, and they'll see how
far she's progressed from last fall. They may say, hey, Dad, she's
got to go into some kind of residential care now. I'm looking for
them to validate and support my suspicions, to help take the edge
off the guilt. But then they'll go home, and I'll be left here," he
He also wonders if his health
will hold up. "Physically, it's taking a toll. I'm having a cyst
removed and going in for cataract surgery. You just wonder what it's
doing to your body," he said.
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Seguin says that it's very
important for caregivers to make time for themselves. Both Bruce and
Joan take their spouses to adult day care four days a week. Bruce
has someone come in twice a week for a few hours to help out, and on
Saturday mornings he attends a men's group that he calls the Liar's
Club. The meetings take place at his woodworking shop, where the men
work on different projects, have breakfast together and talk about
whatever's on their minds.
"And everybody has problems,"
he said. "One guy's wife committed suicide last year, another has
medical issues. It helps you realize you're not the only one who
Joan tries to walk at least two
miles a day and continues to see family and friends. "I'm fortunate
in having one of my children close, and I've also made many new
friends in the support groups we belong to. Sometimes it just helps
to know that other people have these problems, and they kindly offer
suggestions or some kind of help."
Bruce and Joan have also helped
their children deal with their feelings about the worsening
situation. "Some years ago, before his mother was diagnosed, my son
was upset with her because she couldn't follow directions. Now that
she's been diagnosed with Alzheimer's, that explains it for him and
he's doing better."
"Our son always really looked
up to his father," Joan added. "Now, when we go out to eat, he's the
one who has to take his dad to the bathroom, make sure that
everything goes OK, and see that his dad is put back together again
before he brings him back to the table. A year ago, he couldn't do
that. Now he can."
"There are some good things
that come out of this," said Seguin. "You can become closer to the
person you're caring for. In spite of it all, you need to remember
that you did the best that you could, and there's nothing more you
could have done. My dad taught me a lot about dying during the time
I cared for him. He was ready to go, and when the time came, it
wasn't so bad for me because I knew how he felt about it."
"I've become stronger in my
faith as we go on with this," added Joan. "I never ask God, 'Why did
you do this to me?' When I could just scream, I've learned to step
back and say a silent prayer and then watch the process. There's
nothing else to do."
"I've learned patience," said
Bruce. "I was not a patient man, but I've learned patience."
additional information on reducing caregiver stress, contact your
local U of I Extension office.
[University of Illinois news