I mentioned in a previous post an incident in which Marja uncharacteristically didn’t get home until after midnight and I didn’t know where she was. Terror moved into a place just under the surface of my emotions. I realized then that a crucial reason I’ve been able to live without much fear of the future is my assumption that Marja will be there to accompany me through this illness.
What if Marja isn’t here? I have an extraordinarily supportive faith community. We frequently devalue the importance of close community. I hope I’m not being a Pollyanna here, but I have some confidence that if Marja is not here to care for me, then my community will surround me.
My children would certainly be available and would do their best, but I obviously don’t have the same relationship with them as with Marja. I’m sure I could live with them for quite a while, but I could not (and would not) expect them to keep me as far into my illness as Marja. And since my children live far away, I’d have to leave the community here.
There’s no particular reason to expect Marja to be unavailable, and I really don’t think about it much, but sometimes the possibility scares me.
I read an article in the Washington Post on Monday about an AARP report predicting a severe shortage in the number people unable or unwilling to provide unpaid care. The number of potential caregivers (defined by AARP as those aged 45-64, ie our children) available in the next few decades for the elderly, demented, and otherwise fragile people of the baby-boomer generation will be falling. The shortage will be due to:
- the increasing numbers of baby boomers,
- the increasing longevity of Americans, and
- the decreasing number of those younger caregivers available because baby boomers have had fewer children than their parents.
What was astonishing to me was the estimated cost of the unpaid care currently provided by caregivers. In 2009, it was the equivalent of $450 billion, more than the cost of Medicaid and approaching the total cost of Medicare! The national political terror of budget deficits and increasing taxes (a different topic about which I have strong feelings but won’t get into here) makes it unlikely that the huge government financing necessary to fund the increase in paid caregiving will make it through the political process.
Perhaps the greatest fear of Alzheimer's is abandonment. I have my children, so I’ll be okay through most of the journey. But what about those who don’t have unpaid care available? Where will the money come from to care for them either at home or in an institution? Will there be even more substance to our fear?