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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Journal Contents

16. Coping

Dad deserves a lot of credit, because he's the one who has observed firsthand Mother's decline and has put up with the aides. His world has been turned upside down, but he has seen to it that Mother is cared for well. If anyone has done his best to uphold the traditional marriage vow of "in sickness and in health," it's him. When someone who didn't know Mother before the onset of the disease comes to the house, Dad feels compelled to describe to them what Mother was like when she was healthy so that they can possibly glimpse the woman he knew — the smart, vibrant, active woman she used to be.

"Dad would say with disappointment, 'Your mother isn't getting better'"
Living with someone who is declining with dementia can't be easy. With some diseases you take a pill and you're all better; with others you can't be cured but your symptoms can be treated. Lewy body disease is completely different. Mother started taking Aricept and all the other medications, but with little effect. Dad would say with disappointment, "Your mother isn't getting better." When we got up the courage, we'd tell him that she won't be. He knew that, of course, but he didn't want to believe it or give up hope for improvement.

For Dad, Mother's decreasing responsiveness seemed to be a particularly salient indication of her decline. Every morning, he would say "Good morning" to her, and she would reply, "Good morning." Sometimes, he would ask, "How are you feeling?" She would usually say, "Fine," which consoled him, since she wasn't in pain despite her problems. As the weeks passed, however, on some days Mother didn't respond. That bothered Dad. Still later, she stopped responding altogether. That was a hard blow for him.

Early on, we investigated support groups. There are none for Lewy body disease, but there are many nearby support groups for Alzheimer's. We encouraged Dad to attend, because we thought it might help him if he could speak to others about what he was going through. However, he was disinclined to attend. He subscribes to an Internet e-mail list for caregivers. In general, though, he doesn't have the patience to read all the comments and finds that many of the people cared for are mildly afflicted or are in a nursing home. He reads some of the comments, but they don't give him solace.

"Mother's friends abandoned her when she still would have enjoyed their company"
Dad is bitter that most of Mother's friends and acquaintances have stopped visiting. When they first heard about Mother's illness, a number of her friends made efforts to visit. After Mother's situation deteriorated significantly, these friends stopped visiting. It was understandably difficult for them because Mother didn't interact much with others, and later on, it became unclear whether she knew they were there. But we think that friends abandoned her too soon, at a time when she still would have enjoyed their company and welcomed the diversion. Of course, Dad would still enjoy their company.

As for Dad, for us children this is a sad situation. Each of us visits regularly, but we have our own lives, so we're not constantly faced with Mother's illness and can put it out of our minds for a while. It's certainly hard to share our experience with friends. Talking about it can be hard. Friends who haven't had a parent with dementia cannot comprehend what we are going through. Everyone is quick to say the correct catchphrases ("I'm so sorry"), and some friends ask occasionally how things are going, but it's apparent that many others would rather not know.

15. Living Will
17. Future Concerns
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