What We Give Up As Caregivers

By Carol Bradley Bursack, Health Guide Friday, July 13, 2007

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Once upon a time, as preparation for a telephone interview, a producer asked me to post a question on my Web site, so people could have some input ahead of the interview. The question was, "What have you, personally, had to give up, as a caregiver?" Web visitors had a lot to sa...

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Teri Bailey

7/14/07 12:42pm

I really enjoyed this question/answer format. It reminded me of the issues I am currently dealing with in caring for my husband while at the same time trying to carve out a new life for myself. It's been a struggle, no doubt, and one not entirely free of guilt, but I have made an honest attempt to care for myself while Dick moves through the stages of Alzheimer's. I believe what the experts tell me: don't forget yourself! So how have I accomplished that? First and foremost, I have a wonderful women who provides me with two days off each week, and in addition to caring for Dick while I am away, she cleans my house. Next week, she will stay in my home with Dick for an entire week while I take a vacation to Lake Tahoe with my two children and four grandchildren. This I really do intend to do guilt free because I know how much I need to be free of caring for him in order to truly devote undivided time and care to my family. I remember the first time I went to a family party without him --- I did feel a bit odd and somewhat guilty, but, by the same token, I had such an amazing time, I decided to do it more often. Dick has a difficult time in large groups now and sticks to me like glue as a result, so not having that responsibility for a few hours was a lovely experience. Next time there will be no guilt --- and even if there is, I have learned that that feeling is just a natural part of the caring caregiver and to just accept it without letting it overwhelm me. Transition does seem to be a word that defines this disease for both the person with the disease and the caregiver. At home, I also give myself breaks from totally attentive care to Dick. I might quilt a bit or read or just swing in my hammock. He wanders around, talks to his "friend" in the mirrors around the house, or sits in his armchair and naps. Again, I have made a conscious effort to take that time while I can in order to keep my sanity. I can do it because I know that I spend an equal number of hours each day engaging him with dog walks, horseshoes, errand running, meals out, etc. -- whatever I can find that keeps his attention ( and that is really getting harder and harder to do as the disease progresses beyond ten years). And come September, I will begin teaching again --- just one class, twice a week, but it will be a welcome break from Dick's care and will move me back into the world of adults ( well --- high school seniors) for even a brief respite. I'm looking forward to the sense of purpose that teaching provides me. So there you have it: my attempts to have some sort of life in the midst of caring for a husband with Alzheimer's. It is certainly not the retirement that we had planned, but it is my life of the moment and I am trying to deal with it in the most positive manner I can because I know that the alternative would be far more painful. None of this is easy, but then, why do I think that I necessarily get "easy"? What I get is what I get -- not in my hands, but what I do with what I get is more up to me than I might have previously believed when my life was rolling along according to my plan. If all this sounds a bit on the philosophical side, well, it is, because that, too, helps keep me sane and provides answers to the unanswerable question of, "Why me?".

Carol Bradley Bursack, Health Guide

7/14/07 3:33pm

What a wonderful attitude you have! You've obviously learned a lot the hard way. You are going over the ten year mark, and that is a long time to cope with this disease. I'm so glad that you are finding a way to go with your family - guilt free. You are such an inspiration.

Carol

What We Give Up As Caregivers

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