Caregiver chronicles the twists and turns of an altered life: Part 4

Caregiver chronicles the twists and turns of an altered life: Part 4

By Angela Lunde July 14, 2015

The following is part 4 of a 4 part series, Altered Course. The series features an essay and excerpts from a caregiver's journal. This is Rosalie's story.

Year 11: Where we are today

John has fallen 6 times in the past 6 months. With physical therapy and ongoing exercise classes, he seems stronger and more stable.

He's independent in walking to a haircut and to the YMCA via the skyway in St. Paul. He enjoys watching all sports on TV and getting together socially for short periods of time with friends. He's able to shower and dress independently.

He's intact emotionally, often thanking me for what I do. We hug every day to stay emotionally connected. He no longer uses the computer and phone conversations have become difficult. Confusion and hallucinations are everyday occurrences. Our priority is to keep our life as simple and familiar as possible.

Arranging social connections for both of us is so important to our emotional well-being. In that area, I'm learning to ask for help. Occasionally, a friend takes John out for lunch, and sometimes adds some sort of activity. We try to have one social outing each week with friends. Our children and their families spend even more time with us and support us both emotionally and by simply being with us.

"Some days it feels like we are in a canoe and I am the only one paddling. Then, John says something sweet or funny and the day becomes better. Last night, after a big hug from me, John thanked me for helping him and then he paused and said it's only going to get worse."

I participated in an 8 week mindfulness based stress reduction course. It taught me meditation techniques and stress management. It enhanced my yoga practice and most importantly created another community for me. The course helped me to cultivate ease and peace from moment to moment. It helped me accept what I cannot change and to let go. I practice a mantra, "I am safe, I am happy and content, I am healthy, and I feel peace and ease."

It's difficult to take care of myself. By that I mean I can always find other things to do first. What I know though, is that if I don't sleep well, or if I spread myself too thin, the quality of our lives suffers. I know too that I'm helpless in controlling the relentless progression in Lewy body dementia; I'm adamant that it not take both of us.

I use a variety of tools to help me be the healthy person I want to be. Sometimes that means that I simply need to listen to music, go for a walk, work in my garden, call a friend, and escape with a book or movie.

I'm able to recognize that caregiving is now the major chapter in my life. My future holds other chapters. But for now I'm being remade and reformed by my role of caregiving into a gentler, more compassionate, more patient, kinder person.

July 14, 2015

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