Remember my friend from a few weeks ago?
A short, gentle man with a soft voice, he'd admitted his wife to our care floor a few weeks ago, and now participated in his first care conference. This meeting, with all the staff who care for his wife giving input, gave him a chance to ask questions. Many questions. An intelligent man, he had no experience with dementia before this and it seemed every day he felt blindsided by some new crisis.
The time drew to a close and I'd dismissed the doctor and several others who had given their input. He turned to me and said, "I just have one more question. I smiled at him, inviting him to continue.
"Will she get better?"
My heart lodged firmly in my throat, I searched for how to answer him. The wild gyrations of my mind could only settle in one place. The truth.
"No, she won't get better. It's a progressive disease, and it will progress." I paused, gathering my thoughts. "Her disease will progress, but you've already seen an improvement in her quality of life, and yours, and I believe that can continue."
He gave me a quizzical look.
"Remember when she lived with you in the apartment and you looked after her. What were the hardest parts?"
"She slept most of the day and stayed awake all night. I was exhausted. And she wouldn't let me help her. She needed help getting dressed and with other things, and she got angry when I tried. And I was afraid of what she'd say in public."
"And have any of those things improved in the weeks she's lived on the first floor?"
"At first it was so hard not to sleep with her. But the reality is, now I'm getting more sleep. And she's starting to be up during the day more. Not every day, but at least half the week. I don't have to care for her and she's learned to accept care from the ladies who help her. She's sometimes still aggressive, but they are better at it than I was. They just go away and come back, and eventually, she cooperates. And it's really nice having dinner together every night. Almost like a date."
I smile at him. ""Our goal is to support you as well as your wife. We want both your lives to be the best they can be. You are welcome any time, and you can tell us about any concerns you have. Feel free to participate in activities together."
He looked puzzled. "You know, I couldn't believe it the first time she went to group exercise. She was never a joiner. And in later years wouldn't do anything without me. But now she goes to music groups and even flower arranging. It amazes me!"
I laugh. "She still wants to sleep all of some days, and sometimes she acts like every activity we suggest is beneath her. But I'm really pleased with how she's becoming a part of the community. There will be physical changes and cognitive ones, too, as the disease progresses. But there will be joy."
He stood and shook my hand. "That's the biggest surprise. I expected all the bad parts. But I didn't expect the joy."
As you go forward in your care partner journey, look for the joy.
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