“Hope is a healthy, positive orientation that allows us to think about the future and feel okay in the present.” –Wendy Edey
I spent a couple of hours with a dozen spouses and adult children of people with late-stage Alzheimer Disease. We talked about these caregivers as people first, people with their own way of dealing with things, their own likes and dislikes, their own sources of pleasure and comfort. Then we talked about hope, then about their present troubles, and their future worries.
Hope is a difficult topic for this crowd. Their loved-ones have passed the stage of independence. If they are not already living away from home, they likely will be in the near future. Some cry each time their visitors leave. Others are unable to offer their visitors even the smallest flicker of recognition.
The people who attend caregiver groups are a loyal lot, full of compassion, hobbled by the conflicting pressures of their own beliefs. Prolonging the lives of their loved-ones seems cruel, not doing so unconscionable. Long-ago promises of stayng together in sickness and health are broken by force.
As the end of our time grew near, I asked them: “Given all that we have said today, what is it that gives you hope?”
One family, mother and daughter, told the following story.
“Dad has two dogs, plush toys. He thinks they are real. He cares for them, hugs them, pets them, tells stories about them, cries when bad things happen to them. We found the first dog at a garage sale and took it to him, never thinking how much he would treasure it. He was with us when we bought the second one. He hugged it and said, ‘It isn’t real, is it?’ But it also was real to him.”
This story had a very appreciative audience. One person spoke up. “You can’t leave anything in a nursing home,” she said reasonably. “Things get stolen.”
“Oh yes,” said the mother and daughter. “The dogs wander off. Sometimes the staff brings them back. Sometimes we go searching for them. Dogs wander off, you know.”
“One time Dad packed the dogs in a kennel for a trip he imagined he was taking on WestJet. Where he found the box we do not know. The cleaning staff didn’t realize there were dogs in the box when they threw it out. We went right to the store and got similar dogs. Then we bought four more look-alikes.”
Hope is a healthy positive orientation to the future that helps us feel okay in the present.
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