Ten Years After

This was a morning when Cindy’s underpad needed to be changed at the start of her day. As is the routine for when this happens I pick Cindy up in my arms and sit down in the neighboring chair with her in my lap. To accomplish this same task home health aides need to rock her back and forth on the bed, but I have the strength and legal immunity to use this riskier method.

Riskier perhaps, but my method involves TLC to an extent that no nursing home can provide. I gently rock Cindy while suggesting we should relax and listen to the music for a while. The theme I picked for that morning was Andrea Bocelli. As Cindy’s head sunk into my chest I reflected on the December past, present and future of our final journey.

Ten years ago, in December of 2010, Cindy was let go from work. She probably should have been released earlier, but her advanced training and bedside manner earned her a reputation as the agency’s “Golden Girl.” They were giving her the benefit of doubt until there could be no doubt.

December 2010 thus marks the beginning of my caregiver role. A few months later we walked 5,000 miles across the country under my “care.” Cindy improved during the journey, but no further improvement occurred after the hike was over. While doctors continued to rule out Alzheimer’s because of her age I tried different things to help Cindy get better.

In the summer of 2013 I experimented with working at a nearby residential camp for six weeks, thinking she might need greater independence from me. There still was a safeguard with our son Noah also living at home and I spent all my off days at home as well. Yet my “experiment” backfired and she declined noticeably during the summer. In the fall of 2013 she finally was diagnosed as having Alzheimer’s.

In December 2013 we started our bucket list when we booked our first and only cruise, which became part of our first snowbird winter. A few months later we returned to long distance hiking on the Pacific Crest Trail, accompanied by our oldest daughter Charissa. This time the hike did not reverse her decline.

By summer 2016 Cindy could only walk a few hundred yards at a time. With donations from people reading this blog I acquired a pedicab in order to get her outside and around our pastoral town as much as possible. Many thanks, by the way, your donations enhanced our quality of life. I later acquired an adult stroller to do the same.

By December 2016 Cindy could no longer walk on her own. By putting her arm around my shoulder I could walk her places, but she could not even stand up independently. There was no task she could do for herself and she was essentially nonverbal. In other words, she had the symptoms for the last stage of dementia.

As our ten year “anniversary” approached I reacquainted myself with the seven stages of dementia known as the Reisberg Scale. I was particularly interested in how long each stage lasts on average. The first two stages are unmeasurable because they correspond to nonexistent or undetectable decline.The mild cognitive decline involved with the third stage lasts from two to seven years.

When Cindy was let go from work ten years ago she already was in the fourth stage, considered to be early dementia with moderate cognitive decline. When we started our bucket list she was in the fifth stage of moderately severe decline, with some sixth stage symptoms of severe cognitive decline as well. Reisberg estimates the average length for the combined early and middle stages of dementia to be six years, which held true for Cindy.

The average range for the final seventh stage of late dementia lasts from 1.5 – 2.5 years. Cindy has been in this stage for about twice as long as the average for the normal onset of Alzheimer’s, but for early onset these ranges are supposed to be compressed as those afflicted decline faster. Most estimates I read gave a range of 4 – 8 years for all the dementia stages combined. Cindy already has survived 25% longer than the upper range for early onset dementia, with her gains coming in the later stages. She has not shown signs yet of the three common mechanisms of death for Alzheimer’s: starvation, pneumonia or skin infections. In fact, the visiting aides and nurses continue to marvel at her appetite and skin condition.

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Andrea Boccelli starts to sing “Time to Say Goodbye” as Cindy continues to relax and listen in my lap. This was the last song in the mix tape our exchange student daughter from Germany gave us upon her departure. From that moment on this song always moved me deeply.

Living in the present is key to thriving as a caregiver, but sometimes that is not humanly possible. I do not feel like the time is near to say goodbye to Cindy, yet how can one avoid thinking about that while listening to those lyrics? That is a painful reality to our situation; there must be a hundred triggers for thinking about goodbye that are just going to keep happening. Each time will have no bearing on the present while calling to mind a sad moment in the future.

Another impossible task is to permanently tune out all the background “white noise” of caregiving. I hardly ever notice any more how the legs of my backpacker wife have atrophied, but every once in a great while that “noise” comes to the foreground. Occasionally I notice how sunken her eye sockets have become; or her lack of energy. Ironically, living in the present means these pervasive signs of decline usually fade into the background like white noise, but occasionally they rise to unpleasant consciousness of what the past once was.

Living in the present does have a downside. Ten years ago I thought I would hike around the world someday. I was gratified that nobody ever doubted me when I shared that intention, but as time past I doubted I would have the longevity. I curtailed my ambitions down to Europe, South America and Oceania. Now I do not think about any future hikes abroad, realizing in the present that is not within my control. Pining for things that may not occur is a one way ticket towards depression, better instead to dwell on the things you can control.

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Twenty years is often cited as the longest amount of time a person might be afflicted with Alzheimer’s. Ten years from now I could be writing a blog post titled “Twenty Years After.” Assuming that might become true I need to make a few adjustments in order to manage another ten years.

I never meant to retire. Studies have shown that people who do not retire have better brain health. Of course, people who do not retire remain in or start new jobs they enjoy. I had plans in my next phase of life to draw income from both music and writing, maybe even from hiking, but as time passes on I cannot assume these will happen due to physical limitations.

Thus I need to find a way to draw some income while being a caregiver. Our financial situation was dicey at one time with neither of us working. Refinancing the house, the generosity of others and a one time windfall righted the ship. We are financially stable for now but ten more years with neither of us working could put us back into a hole. Being engaged in projects is a key to caregiver health, I just need at least one of my future projects to draw income.

The symphony is finished and the plans to perform it next summer derailed by covid, but that opens the door for producing a DVD instead. Originally I had planned to donate income from the symphony to charities related to our final journey, but I may need to keep a portion for myself. I hope this project will facilitate earning income from other music as well, produced by my band The Bards of Balance. Maybe I will create new music targeted for income as well.

I stopped accumulating stuff long ago, as do most people gaining wisdom as they age. There are books still unread, board games not played, in that accumulation. As a form of closure I intended to go through our various archives of stuff in my next phase of life, some to digitize like photos and music, others to use for the first and/or last time. Now I am thinking I need to find a way to start that process now.

A variation of this archives theme is to go back and read through the entries of this blog. Those who have followed our journey for a while likely noticed the entries becoming fewer and farther in between during Cindy’s final stage of Alzheimer’s. There is less to report now with less free time to do the reporting. What I do share now  is less informative or inspirational, contradicting the intended purpose of sharing.

A coming New Year approaches while potentially another decade as caregiver awaits. I still will post any new development in this blog, but also share “reruns” from the past. This exercise may also identify enough material to be book worthy, providing an opportunity to share our final journey with a larger audience and a means to draw income in my next phase of life, whether that time is far off or close at hand.

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This is the past, present and future of our final journey as Christmas approaches. A sobering tale perhaps, but fortunately without the specter of Christmas ghosts needed to guide us. Instead of ghosts there are the spirits of Cindy’s will to live and my will to persevere. Snapping out of my December themed reflections, I return Cindy to her hospital bed and continue on with the routine that helps both spirits to thrive.