In the past few weeks I have directed two friends of friends to my counselor. For a while I had employer provided health care insurance which included a behavioral health benefit and I saw her more frequently, but now I pay out of pocket monthly.
Meanwhile I saw an article in AARP that quoted a billion dollars a year of lost wages because of family caregivers needing to quit work. Probably doesn’t even account for the caregivers that still work part-time and have another family member provide care when they’re at work. which I was able to do.
So today I melt the two together to talk about the cost of care for the advancing dementia patient. Somehow it is less painful to just look at the numbers and imagine the cost to families in lost wages. But psychological cost is so much more than that.
In our situation, we had long term care insurance which allowed me to work half-time to keep our health insurance for a year on the downward side of moderate dementia. As a result we were able to stay in the cozy cabin out on the Olympic Peninsula that my husband loved for at least another year after the social worker at the dementia clinic recommended that we move closer to family and medical care. And looking back, that year living on the lake surrounded by national forest, bird calls and amazing starry night skies was magical.
But after the long term insurance was gone, and a major downward slide amplified by two lengthy hospitalizations landed us in a situation common to most dementia stories—I could no longer safely care for him alone. I made the decision to cash out a hundred thousand dollar life insurance policy to do a major remodel of a section of one of our kids houses to make a place for me to care for him with help from them. It was what he wanted.
That life insurance policy was to help me with expenses after he was gone. And so here I am alone and worried about finances. He would not have wanted that. Would I have done the same thing if I had to do it over? For sure. Do I have feelings about it? Oh boy do I.
Anguish that he had to go through this horrific disease.
Rage at God/Universe.
Resentment at the U.S. Health Care system.
Waves of sorrow.
Middle of the night second-guessing.
Isolating heartbreak.
Honestly, I don’t know how I would have made it without my counselor. If you can’t afford a counselor, go to the Area Agency on Aging website and find help through there network.
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