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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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15. Living Will

Before she became ill, Mother had signed a living will and executed a power of attorney. The power of attorney allows us to manage her financial affairs without getting the authorization of a court. The living will is a more sensitive matter. It states that Mother doesn't want to receive extraordinary care that would extend her life. This is going to pose issues for us down the road as Mother's health worsens and we have to make decisions about her treatment. Of course, any decisions of this kind are to be made in consultation with Mother's doctor. But it raises the issue for us of what constitutes extraordinary care for a person suffering from Lewy body disease where the inevitable result is a vegetative state and a slow death.

"The living will states that Mother doesn't want to receive extraordinary care that would extend her life"
Recently, a lump was discovered in Mother's breast. It proved to be non-cancerous and not serious. However, in the days before we knew this, we had to consider whether we would want to subject Mother to chemotherapy and radiation and whatever other treatments there are for cancer. The treatments would cause Mother pain and suffering. And, considering her quality of life, for what result? When we expressed these concerns to the doctor, she was sympathetic. If it was cancer, Mother would take an oral medication and no more. Fortunately, the lump wasn't cancerous, but it did give us pause, and we re-read Mother's living will with a fine-tooth comb.

A second concern raised similar issues. Mother is having trouble swallowing. On the two occasions that Dad has mentioned this to her doctor, he said that in the future Mother might have to have a feeding tube inserted. But the living will gives the feeding tube as an example of the kind of extraordinary care that is not authorized. As a result, we made sure that Mother's doctor had a copy of the living will and understood that Son, not Dad, was Mother's authorized healthcare representative. This was significant because it seemed that Dad's first priority was to make sure Mother always has the best treatment and we were concerned he might take actions that would prolong Mother's life at any expense. As it turned out, when we discussed the matter with him, we found that his attitude had changed and he agreed that life-prolonging treatment wouldn't make sense. We think this is because, when Mother was first diagnosed and for several years afterwards, Dad clung to the hope that there would be a cure or at least some drug that would stop the disease from worsening. As Mother's quality of life deteriorated, Dad seemed to recognize that Mother will eventually succumb to this disease. In fact, he recounted the futility of measures taken by his mother to prolong his father's life.

14. Slow Decline Continues
16. Coping
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