HUMANITY HIKER

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. 

A year ago I began a review of our walk across the country, from May 2011-May 2012.  I retold our story by being open about Cindy’s cognitive decline at the time, a decline that reversed during the hike but resumed afterwards.  Here is an update of how our life stands as of June 2022.

We are entering the fourth year of my hospice care for Cindy here at home.  Since the beginning of hospice care our situation and routine changes very little, one reason why I reviewed our hike across the country instead of posting infrequent updates.  After the passing of months even a situation as stable as ours features a few changes.

While changing Cindy a few months ago, her foot apparently caught on the mattress and I ended up tearing a ligament in her knee.  While this did not cause much pain, bruising occurred and her left calf became floppy, hanging in whatever direction gravity dictated.  That injury has healed, obviously with plenty of rest among other treatments, but a permanent change to our routine resulted.

I used to stand Cindy up for a slow “dance” three or four times a day, in essence holding her up in my arms and swaying to the music, while her left leg provided some support.  Half the reason for our “dances” was to maintain a modicum of Cindy’s physical strength and integrity, but without that leg providing some support holding her up required too much endurance on my part.  I hold her in my lap three or four times a day instead.

Just today I noticed her left leg finally providing the proper resistance to her range of motion exercises, but we cannot go back to our old routine.  At least holding her in my lap still gets her torso upright and out of bed throughout the day.  The intimacy of her being on my lap is no less than our “slow dance,” in fact better, as I no longer struggle with keeping her upright when she goes slack in my arms.  By the way she nuzzles and buries her face into my chest I suspect she prefers this permanent change to our routine.

Partly because of her injury I position Cindy and her pillows in ways that sometimes lead to red spots alternating between her lower back and right heel.  I check for this in the morning and applying ointment always eliminates the spots by the end of the day.  Skin sores leading to infections are one of the causes of death for those with advanced Alzheimer’s, but they have never threatened Cindy.

The same cannot be said for Cindy’s spreading gum disease. I dutifully administer prescribed mouthwash with cotton swabs to her gums, but the necrosis where gums meet teeth still spreads.  Cindy seems to actually enjoy the swabbing of her gums, but I cringe with the knowledge that there is a higher coincidence between gum disease and dementia than there is with the beta-amyloid plaques that cause Alzheimer’s.

Cindy’s gum disease resulted from her unfocused chewing, causing food to pile up and saturate her gums.  Unfocused sipping as well sometimes requires the use of tablespoons or syringes to feed her liquids.  Her healthy appetite remains as we still eat the same meals, but the time to do so slowly increased over the past few months.

Meanwhile, unfocused swallowing contributes to the frequency and subsequent concern for Cindy’s rasping and coughing.  Piling up at the back of her throat could be mucus, drool, liquids or a combination.  Of the three most common causes of death for those with dementia—infections, starvation or pneumonia—I am most wary of the latter, but the hospice nurse has yet to find any problems with oxygen levels or congestion in her lungs.

Almost a year ago now Cindy’s coughing alarmed the hospice volunteer that sat with her one evening a week.  She stopped coming, afraid that Cindy might pass away during her watch.  Others have stopped coming over the past year as well, with all four of the PCAs I once hired through a Medicaid program no longer coming.

The lack of coverage for special occasions poses the most difficult challenge I face.  Months ago I lined up both coverage and back ups for my recent 50th class reunion, taking advantage of both Medicare and Medicaid programs.  With a couple weeks left I went through five cancellations, the last one being the morning of the reunion. Fortunately, I found coverage that same afternoon, in time to attend the evening reunion.

The difficulty with special occasional coverage, plus my regular coverage shrinking to less than ten hours a week, revives again my hope to find residential caregiver assistance.  I figure if the coverage actually lives here they cannot get away (that’s a joke, sort of).  Anyone who has a suggestion for who would be interested in this, please leave me a comment.

Over the past few months a couple visitors claimed they witnessed a smile from Cindy, but I think that may be wishful thinking.  I have not seen a “Cindy smile” for a long while.  I see her become more alert when she hears our children’s voices in the room, also looks of what seems to be pleased recognition of me, but no smiles.

This would be another reason for a residential caregiver, to have more smiles return to the house.  I often can make others smile through playfulness or compliments, and I trust I still make Cindy smile inside, but more tangible expressions would do much to keep my own spirits up.  Now in our fourth year of hospice care here at home, I assume my routine must be that of a permanent gig.