June 2022 Update

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.