When I imagine the end-stages of this disease, the fear of being a burden on my wife Marja or my children rears its ugly head frequently. I don’t want my family to suffer from the responsibility to care for this old man. I don’t want caregiving dominating their lives, creating resentment and distorting their memories of me, yet it seems almost unavoidable.
But what’s so wrong with being a burden?
Certainly much of my distaste derives from the hyperindividualism of our society. Being dependent on another person just feels shameful and somehow morally irresponsible to me. In other cultures—even in westernized Finland where Marja grew up—taking on the care of family and elder community members is much more an expected part of life, not an extraordinary burden. Here in America, it feels disgraceful.
Part of my fear is just my personal revulsion at the thought of being fed, being dressed by others, wearing adult diapers, and having to be changed and cleaned like a child.
But, the most important part of my fear stems from my love and compassion for Marja. I want her to be happy and to live a full life, unaltered by the overwhelming demands of caring for me. I’ve not been very emotional about my condition, but thinking about the pain Marja will experience as it progresses brings me close to tears. I’ve seen the isolation that family caregivers can experience—especially dementia caregivers—and I don’t want to saddle her with that. I don’t want resentment to be the last feeling she has for me.
If Marja were to die before me, I am terrified of the impact that would have on my relationship with my children. Then they would be the ones to bear the burden of my care.
But I wonder if my pride, so deeply rooted in my independence, is blinding me to deeper realities. Will Marja, in fact, experience caring for me as a burden? She’s a natural caregiver and derives great joy from empathising with others (far beyond that point where it would induce resentment in me). Isn’t it possible she will find caring for me meaningful and fulfilling? Isn’t it possible that, after our relationship of 50 years, she will find caring for me is just another part of our loving union?
Many people have commented on my blog posts, sharing personal stories in which the late stages of Alzheimer’s disease actually brought more joy and closeness between people than was possible earlier in life. I do not doubt that there are gifts hiding in this disease. Perhaps new-found joys and the different dimensions of our relationship might mitigate some of the caregiver burden?
I won’t gloss over the negative aspects, however. I still believe that dementia caregivers endure the brunt of the pain this disease inflicts. At some point, even Marja’s strength and patience will wear down. We must continue to talk with each other about such feelings and allow new care decisions as necessary. I want to know: What is her sense of burden? Is she fearing it as much as I am?
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I don’t want to project my fears upon her, but I also want her to recognize and see to her own needs. There are other ways of caring for me. Together, we must acknowledge that I will eventually need the memory care unit of a nursing home. Fortunately, our daughter Laurel has promised that she will put up a fight if her mother tries to keep me at home beyond common sense.
These are difficult yet important discussions to have with all family members. We must plan for the future, but we must also recognize that the fear of being a burden is, like many other fears, a fear of the future. To the extent that I live in the present, this fear isn’t real. The future is unknown and unpredictable. Living in the present is an antidote to fear.
My fear of being a burden is very real, but perhaps it doesn’t need to be so heavy.