An Important Discussion to Have

The topic of nursing homes has been broached in the Sinclair family, with suggestions that I should be open to the idea of placing Cindy in one.  As an important topic for almost every family at some point I share my own insights for others to consider.

My mother already had the beginnings of dementia when my father passed away.  I recall sitting in Mom’s bedroom while she showed me brochures of nursing homes where she could go.  With my wedding to Cindy just a few weeks away I told Mom I did not need to see the brochures; we would be taking care of her.

Mom had always been the calm, logical parent, abundant with goodwill but sparse with physical affection.  When I told her we would not be sending her to a home she threw her arms around me and drew my head to her bosom in a scene I will never forget.  For the sake of others she wanted to go into a home, but what she really wanted, what most people want, is to be in a place they love with people they love.

My own version of sparing loved ones the need to take care of me has been a plan to hike off into the sunset once I get to a certain point of decline.  Maybe if I get into my nineties I will start to climb mountains like Denali solo. I came up with this plan decades ago, upon learning this was common practice for nomadic tribes.  Yet my resolution to date have been made by a person with sound mind and body; will that still be my desire as I grow old and feeble?

Cindy and I never discussed the topic of nursing homes for either of us.  After we came home from her official diagnosis of Alzheimer’s she went up into the attic to sort out which of her things she wanted to go to each daughter after she passed away, a task that proved too formidable for her state of cognitive decline.  We made out a bucket list of things to do while she still could appreciate them, but neither of us mentioned assisted living or nursing homes.

On a couple of occasions Cindy encouraged me to get a mistress, which was the extent of her voiced opinion about what I should do about her decline. I take that to mean she wants me around but I should do what I need to do to live my life well and be happy. Is that not what we all wish in regards to our loved ones?

We eventually placed my Mom in a nursing home, 4 ½ years after she rejoiced at being told we would take care of her in her own home.  She stopped eating and we took heroic steps to keep her alive, which first meant a trip to the hospital and then the nursing home, where she passed away six months later.  Raising our young children took precedence and, after all, she had given her blessing to being placed in a nursing home.

With the advantage of hindsight I would have kept Mom home to let her pass away sooner under her terms, in her home surrounded by loved ones.  That is now my plan for Cindy if and when she stops eating.  As long as she eats well I assume she enjoys life enough to continue living. Once she stops eating that tells me that not even her home and husband are making a difference. I suspect watching her final days will then be difficult for me, but at least those final days should be few.

The topic of nursing homes came up because of my recent frustrations over lack of coverage.  In my last blog post I shared that I thought I was about to have the most coverage since I became a caregiver. That fell apart instead and some weeks I have had less than five hours coverage.  Coverage goes in cycles, but less than ten hours per week is not enough to sustain me for long.

Going from assumed most to actual least amount of coverage taxes my patience, and I am now resolved that my next “project” will be to use whatever means to get at least twenty hours of reliable long term coverage, applying the same determination to that as I did to composing the American Discovery Symphony.  For only after I get such coverage can I work on other projects and live my life as Cindy would have wanted.

Meanwhile, I have instructed that if my family detects ongoing depression, rather than situational frustration, then they should do an intervention to remove my caregiver duties, if I am not astute enough to do so myself.  This experience has made me a student of brain health; I know too well that depression as a caregiver increases my own likelihood of getting dementia by sixfold.  I want to uphold Cindy’s wishes to always be there, but going down the path of depression means doom for us both.

Do not worry.  I guarantee depression will not find me if I find adequate coverage.  For the actual caring of Cindy gives me no problem whatsoever, being her nurturer and protector actually uplifts me.  I just need the time to live my life for such things as major projects … and perhaps even to date.

There are many variables involved with the twilight of a life, some that would remain hidden without discussion, such as my Mom’s hidden wishes that day she hugged me.  My own preference is to pass away peacefully in the middle of some beautiful wilderness, but I am not the only person affected by my passing and that may not be what they wish.  Towards the end I do want to become an undue burden in someone’s care, nor do I want to deprive them of that care should they find that rewarding. I hope sharing this prompts others to consider and discuss with their partners about such matters.