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Essays on LBD Caregiving

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My father-in-law, Dan Nyhart, is a man of bright wit and tender heart. He is only seventy-five years old, but for five years he has been fading away from us into dementia.

My father-in-law, Dan Nyhart, died three weeks ago. It was sudden in a sense: we got a call on Thursday that he was running a fever, then were told Friday that it was looking serious, and by early Saturday morning he was gone.

Adult Day Care is a lifesaver and something I wouldn’t want to be without. Sometimes though, I want to tell the staff to leave me out of the formula for his entertainment. Nelson told me one morning that “tomorrow” he needed a costume. Tomorrow? Now how will that work, and what magic is going to make it happen? Me, I guessed.
 

While some unseen hand turns the kaleidoscope, Nelson and I are beginning our forty-second year of marriage and still watching to see how the pieces of our lives will tumble into shapes and patterns of light and dark, hope and joy, grief and dismay.

Dementia can be overwhelmingly powerful, but love can be even stronger. When that happens, "it's pretty much like witnessing a miracle."

Hurricane Ike reached his tempestuous tentacles all the way up to Ohio, and on a Sunday evening at 8:30 we found ourselves without power. I was prepared with small amounts of water and a four-battery flashlight. With my pioneer heart and long ago camping experience I felt prepared and unalarmed. Besides, the power would be back on soon.

Lewy Body Disease slices life into two: before LBD and after. Equal partnership shifts to caregiver and care receiver. Roles change into the manager and the managed. Companionable communication becomes silence. Old dreams morph into new realities. Old assumptions become new challenges.

I have thoroughly enjoyed the e-mail responses to my blog. I have laughed and cried, felt helpless, hopeful, and happy, as many of you have shared your own personal stories with me. So, I am back. Knowing that your stories and mine run so parallel is an antidote to the isolation and loss that nips at my heels. Connecting with you is the big stick that fends off the loneliness caused by lack of meaningful communication with my spouse.

Our daughter is getting married!  We are moving into a season of major changes in our family, and it is good. I get to be an instant grandma because her fiancé has an eight-year-old son. I made a treasure hunt for him when they visited us here in Ohio from Kansas, and I got a big hug for it!

I keep trying to hang on to the goodness in life – keep trying to focus on the hope. Still, it seems I’m on a leash that will let me go only so far toward equanimity before I am jerked back to my reality and the grief of struggle.