On Amtrak from Napa to Kansas CityWhen I imagine the end-stages of this disease, the fear of being a burden on my wife Marja or my children rears its head frequently. I don’t want my family to suffer from the responsibility to care for this decrepit old man, distorting their lives, creating resentment, and dominating their memories of me. I don’t want it … and it seems almost unavoidable.
But what’s so wrong with being a burden?
Certainly much of my distaste derives from the hyper-individualism of our culture: Being dependent on another person just feels shameful to me, somehow morally irresponsible. In other cultures—even in westernized Finland where Marja grew up—taking on the care of family and community members is much more an expected part of life … not an exceptional burden.** Here, it feels to me, it’s disgraceful.
Part of my fear is just my personal revulsion at being fed, being dressed by others, wearing diapers and having to be changed and cleaned like a baby.
Most important are my love and compassion for Marja. I want her to be happy and to live a full life, undistorted by the overwhelming demands of caring for me. I’ve not been very emotional about this disease, but thinking about the pain Marja will experience brings me close to tears. I’ve seen the isolation that caregivers can experience and I don’t want to saddle her with that. I don’t want resentment to be the last feelings she has for me.
If Marja were to die, I would be terrified of the impact that being a would have on my relationship with my children.
But I wonder if my pride 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 sharing in the pain of 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 fifty years of our relationship, she will find caring for me just part of our loving relationship?
Lee Ann Gerleman and others have left stories in comments to this blog in which the late stages of Alzheimer’s actually bring more joy and closeness than was possible earlier in life. There are gifts in this disease. Might not newfound joys and the different dimensions to our relationship mitigate some of the burden?
I won’t gloss over the pain, however. I still believe the caregiver gets the brunt of the pain in this disease. At some point even Marja’s capacity will wear down. We must continue to talk with each other about such feelings and allow new decisions as necessary. What is her sense of burden? Is she fearing it as much as I am? I don’t want to project my fears upon her, but I also want her to recognize her own needs. There are other ways of caring for me. We need to recognize together that I will eventually need the Alzheimer’s unit of a nursing home. Fortunately, my daughter Laurel has promised that she (Laurel) will put up a fight if Marja tries to keep me at home beyond common sense. These are important discussions.
We must plan for the future, but we must also recognize that the fear of being a burden is, like 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.
** I’d be very interested in hearing from those readers who are from different cultures: To what extent do the elderly or ill fear being a burden?