Few situations strain caregivers like the longtime, debilitating illness of a spouse while you're still vital yourself.
And that's exactly the issue that got a bit lost amid last week's furor over fundamentalist Christian leader Pat Robertson's comments that divorcing a spouse with Alzheimer's is morally feasible because the disease is "a kind of death." There was lots of talk but no frank discussion of the very real dilemmas of the unlived lives of longtime Alzheimer's caregivers.
On websites and at water coolers, commenters lambasted the very idea of breaking marital vows. Unclear, however, is how many of them were speaking from the shoes of an advanced Alzheimer's caregiver. Last year Caring.com's Family Advisor columnist Carol O'Dell ignited a similar furious debate when she urged the depressed wife of a disabled man to allow herself to live her own life in a post about the stress of a sexless, loveless marriage. And she wasn't even talking about sexual affairs.
All couples, in health as well as in sickness, have to negotiate a balance between the interests of partner, partnership, and self. Caregiving throws this balance out of whack. As caregivers struggle to act selflessly, the "self" part gets blurred -- and mental health, physical health, sexuality, career, other relationships, and more may be sacrificed. Advanced Alzheimer's caregiving is even trickier in this regard because the disability can extend to your loved one's very awareness of you and your marriage.
Many loving spouses would never dream of divorce or infidelity and find ways to live their lives as both Alzheimer's caregivers and fulfilled humans. Other loving spouses find the going much harder, and why shouldn't they? They're only human. Still others, I suspect, can't even begin to articulate their struggle to define the quality of life they deserve, because they feel (as the Robertson controversy indicates), that it's socially unacceptable to even have such thoughts.
Which is unfortunate. As geriatric psychiatrist Ken Robbins said in a recent Caring.com article about how your sex life may change when a partner has dementia, "There are a lot more questions than answers."
- If you're married to someone who doesn't recognize you as a mate, or can no longer comprehend what marriage is, is that a marriage?
- If your relationship can't possibly be equal, is that still a marriage?
- If your loved one can't have sex, is that a marriage?
- If you don't want to divorce a spouse with Alzheimer's, is an affair ever viable?
- Or does "in sickness and in health" apply no matter what, and even if your loved one has Alzheimer's for 5, 10, or 15 years?
- Should more of us be discussing this with our partners before the first hints of mild cognitive impairment appear?
"It's a significant issue for couples, and one that will continue to grow," Dr. Robbins says.
That much, we can all agree on.