On New Years I went for my traditional long hike. The hike allows me to reflect on the past year and make resolutions for the upcoming one. Since New Years follows a month worth of holiday feasting and leftovers, the hike also gives me a start on probably the most common New Years resolution of losing weight.
I reflected that being a caregiver now has become my longest “career,” surpassing my longevity as a GIS Manager for HVA, a nonprofit watershed organization. I also worked as an educator in various capacities for multiple year stretches, but combine all those stretches together and I still have been a caregiver for longer. I reflected, as I enjoyed my passion for hiking outdoors, that I now have gone the most years without backpacking since I became a Boy Scout, over nine years since we returned from our Pacific Crest Trail journey. I also reflected that if Cindy survives three more years then I will have spent 50% of my marriage being a caregiver for a relative suffering from dementia.
My resolutions as always revolve around preserving my brain health and Cindy’s will to live, along with the routine and resources necessary to make them happen. For caregivers a time for new resolutions comes when a “new normal” is reached, a new stage of decline in their patients. This year the new normal I face and the New Year coincide.
This new normal differs from all previous ones for caregiver and patient. Being taken off hospice acknowledges no further decline for Cindy. Technically, Cindy’s affliction is not considered terminal and thus my new normal should be treated as permanent. I now require lasting resolutions, routines and resources for the New Year to match my “permanent” situation as a caregiver.
The recent series of blog posts to close out 2023, titled “Beyond Palliative Care,” focused on what I needed to do for Cindy’s will to live. The coming series bringing in the new year, titled “Beyond Terminal Care,” focuses on the resolutions, routines and resources I need to remain a “permanent” caregiver.
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The past week has been a difficult one for Cindy’s care. In the wake of her coming off hospice I had to make decisions regarding her Medicare coverage and procurement of a hospital bed. The bed we were using had been rented through hospice from Doyle’s Medical Supply. The agencies associated with Cindy’s care were displeased with Doyle’s for “double dipping,” as our case manager at CCCI called the situation, which caused the “Scottish” in me to look for alternate solutions.
Under a private program one could rent a bed from Doyle’s Medical for three months, then pay a buy out price, or rent the bed for a full year to own. Having been placed in a hospice program, Medicare instead paid the rental for the bed we used for 55 months. The “double dipping” that irked our case manager and others involved Doyle’s Medical getting paid for the cost of the bed many times over through Medicare, then seeking to charge us directly under their private rental guidelines.
Unhappy with this arrangement, I initially went with an offer from a friend in town to use a hospital bed she owned for as long as needed. The problem with this solution was the inconvenience to Cindy of breaking down one bed and putting up the other on the same Thursday. As we grew closer to Thursday I grew uneasy about this solution, pinching pennies (hundreds of dollars actually) when I should be putting Cindy first. Then on Wednesday, the day before the switch would be made, Cindy came down with a fever. That convinced me to buy out the bed already in place from Doyle’s Medical, so as not to disrupt her. That is when this post started percolating in my mind.
I “compromised” a little on costs by using the gel mattress our friend could provide, in lieu of the alternating pressure mattress I would otherwise buy out from Doyle’s. That led to colossal misfortune. By Friday a large red area appeared near her coccyx and by Saturday Cindy had open sores. I called the VNA to come in for a visit and bought a brand new alternating pressure mattress from Amazon.
The irony in this is that Cindy’s open sores may place her back on Medicare supported visits from the VNA, though hopefully we can get her wounds closed up soon now that I have her back on the right mattress. I fancied Cindy’s lack of skin problems over these past few years was due to my attentiveness: the diet I provide, the outings in the sun with the stroller and the immediate treatment of small red spots that occasionally appeared. I was shocked and humbled to see how just one and two days of being bedridden on an ill-suited gel mattress could deteriorate the skin.
Other caregivers beware! In Cindy’s advanced state of deterioration I know her skin heals more slowly than for most of us, but good grief! Even if you anticipate yourself being bedridden for only a few days an alternating pressure mattress may be one of the best purchases you can make. The hospital bed I will try to donate to somewhere needed when this is all over; the mattress and motor I’m keeping. You just never know.
The Scottish in me insists upon providing one other lesson. I bought the new alternating pressure mattress and motor from Amazon for $51, just a fraction of the cost for buying the hospital bed and something I was glad to do. Doyle’s Medical had offered a buy out price of $90 for essentially the same mattress, except we already had used and rented the motor for 55 months. Read those numbers again and determine how you may want to include or exclude Doyle’s Medical Supplies from your own caregiver strategies.
Shortly before Cindy was removed from hospice they asked me whether beating the odds for keeping her alive was really what she would have wanted. They were questioning whether choosing quality of life measures over palliative care actually gave Cindy a life she wants to be living.
Three perspectives matter for choosing quality of life over palliative care measures. The day she received the official early onset diagnosis Cindy cried during the ride home, sad about the continued cognitive decline she faced. Once we got in the house she went into the attic to sort out what our daughters should inherit from her, now in gracious acceptance that she had effectively received an early death sentence. Cindy never feared death as much as becoming a burden. I admit that from the Cindy of the past perspective I made the wrong choice. If she could have viewed this future for us she would have requested I stop prolonging the inevitable.
From my perspective, Cindy’s main concern does not apply because she has not burdened me, and I am not trying to be a martyr. I knew that caregivers for patients with dementia are six times more likely to get dementia as well, and if that happened we were both doomed. I have been willing from the start to relinquish my caregiver duties if I started sensing my own cognitive decline, but my mind still is sharp … or at least I think so. 😉
The perspective that matters most is the hardest to gauge, the Cindy of the present. We humans have a marvelous ability to adapt to changing environments and conditions. Consider the spirit and joy of the participants in the Paralympic Games. A person may not want to be alive with no legs until they go through the experience and adapt. Can such adaptable spirit and joy be experienced as well when one has dementia?
My life as a caregiver for Cindy provides testimony to that. I posted on this blog about the time I suggested to Cindy, when we walked up ramps because of her balance problem with stairs, that we enter a marathon. She enthusiastically assented to the idea, perfectly oblivious to the impossibility. The Cindy of the past would know better, but knowing better does not matter for enjoying the present.
Before her first seizure and the start of hospice I detected moments of sadness and frustration in Cindy that, if prolonged, might have caused the Cindy of the past to scold me for doing my job well. Yet I always could make her smile at any time. Companions claimed they came just to see that smile. A smile as endearing as Cindy’s is not an attempt to put on a brave face, but an expression of the joy she feels. The Cindy of the past would cringe at seeing her future self having to be held up while we “danced,” but the Cindy of the present beamed.
Along this journey to live well in the face of tragedy, the Cindy of the present never confused herself with the Cindy of the past. Though she no longer could say names she never confused family members of the present with someone from her past. She never had episodes with living in the past, an occasional characteristic of dementia. Her mind stayed focused on the present, I suspect because she enjoyed herself more than the Cindy of the past imagined possible.
Once the hospice years started the smiles disappeared. Some companions still swore they detected a smile from her when they visited. Maybe that was wishful thinking on their part; maybe I am spoiled by the radiance of Cindy’s normal smile. What I still detect from Cindy are extended moments of peace in her countenance, along with sighs of contentment when I hold her in my lap.
From taking care of my mother at home with dementia I know what prolonged bouts of melancholy look like. I know what prolonged bouts of anguish look like. After my mother spent a few months in a nursing home I knew what permanent emptiness looked like. I do not detect any of this with Cindy. The Cindy of the past may abhor that she is still alive at this point, lasting even beyond hospice, but I do not think that is what the Cindy of the present feels yet.
Kirk of the past could have learned from Cindy of the present. As we hiked across the country, our most amazing journey out of many, I apprehended a time when we would not be able to share those amazing memories. As we pursued our bucket list and Cindy was full of smiles, I apprehended when she would pass away and take those smiles with her. I am embarrassed to admit I started planning her memorial service in 2016, based on my mother’s rate of decline and the knowledge that early onset often proceeds rapidly.
Lesson learned. I focus on the present now with little apprehension about what the future brings. With a DNR in place, I leave to Cindy the decision of when I have done enough, trusting that I will not mistake her nonverbal signals when she feels her time has come to pass. Perhaps she will stop eating; perhaps she will look empty; perhaps she will look so distressed that morphine will be warranted. Whatever the signal, my guide will be Cindy of the present, not Cindy of the past.
The VNA provided a “comfort pack” for Cindy when they placed her on hospice care. The pack included medicine deemed necessary to comfort a hospice patient during the final decline, with everything from suppositories to morphine. I only use lorazepam, an antianxiety medicine that also helps to combat seizures.
Cindy continues to get very mild seizures at the rate of about every three months. One strategy for keeping them mild has been limiting sugar and caffeine in her diet. Another strategy has been playing guitar or reading to her when she appears agitated. These strategies enabled me to use lorazepam sparingly, when she seemed most agitated, with the minimum dosage of 0.25 ml suggested by the VNA.
Eventually I began to give Cindy lorazepam every evening before bedtime, even without signs of agitation. This was a preventative measure for both of us, since playing guitar or reading to her in the middle of the night would have been detrimental to my own health. The minimum dosage of 0.25 ml continued to work at keeping her calm at night for years.
In the months leading up to Cindy being removed from hospice, one tactic suggested to keep her on was to incrementally increase the lorazepam dosage up to the normal level of 0.5 ml. I increased the dosage only to 0.3 ml; as long as that keeps her calm at night I will not increase the dose further. Another tactic suggested was to give lorazepam regularly during the day, in addition to night, particularly to make her more comfortable during her range of motion exercises. The previous blog post explained why I do not follow that suggestion.
I am neither pro nor anti medicine. Medicine can be the only solution to a health problem, but in some cases risks side effects that then calls for more medical treatment. I will choose medicine as the best way to remedy a health problem, but never as the easy or most comfortable way. “Harder,” less comfortable means of calming Cindy by reading, playing guitar or simply holding her hand have no potential side effects, while increasing the activities and intimacy we share.
Why not do both medicine and calming activities? Lorazepam calms Cindy to the point of being sleepy, less perceptive. Besides the fact that I want muscle resistance when doing her exercises, activities like reading would hardly register with her when sedated, if at all. This is another example of choosing quality of life over palliative care.
The next and last post in this series addresses the concern voiced by some as to whether there really remains a quality of life to maintain.
Note: I feel like photos of Cindy in the present sort of invades her privacy. I will continue to provide photos of Cindy or us enjoying our quality of life in the past.
Once Cindy struggled to walk, I requested that the VNA provide me instruction for physical therapy exercises to do with her. She receives these exercises to preserve the range of motion in her limbs 4-5 times a day, mostly from me, sometimes from home health aides. As her limbs grew more rigid over time the aides struggled to stretch them out, which created another issue over her palliative care.
Sometimes Cindy grimaces as she resists her arms being uncoiled, while on other rare occasions she is totally relaxed and her arms uncoil limply. Those wanting Cindy to be as comfortable as possible prefer that she be relaxed for her physical therapy, but I do not. This is another example of prioritizing quality of life over palliative care.
I admit to being an aerobics snob. I have hiked, backpacked, ran, cycled, kayaked, canoed and cross country skied long distances, secure in the knowledge that among the many benefits of cardiovascular exercise is blood flow to the brain. When I first read in fitness magazines that strength training also provides brain health benefits I scoffed, but then I read the research articles reporting that muscle resistance releases brain derived neurotrophic factor (BDNF), a biochemical that stimulates the growth and repair of neurons.
I realize that no amount of BDNF will restore Cindy’s brain health at this stage of her decline. Yet I also know that neuroplasticity, the rewiring of brain cells, continues for our whole lives. As I wrote in a previous blog post, the combined impacts of neuroplasticity and dementia means one step forward and three steps back with inevitable cognitive decline. My goal has been to make sure that the one step forward with Cindy’s brain involves me and especially the enjoyment of life, right up until the end.
Extrapolating from the research on strength training, Cindy’s resistance during physical therapy releases BDNF. Is that part of her rewiring process? I do not know enough about the biochemistry and mechanisms of action to say. In any case, with Cindy’s physical therapy I see an opportunity for us to connect, for her continued rewiring to include me. One of the exercises involves me bending down close to her face. Sometimes she responds to this by sticking her tongue out, in addition to swallowing the only muscle movement she controls. This is an unmistakable gesture for us to kiss, and I oblige.
Though she occasionally grimaces as her muscles resist being straightened or bent, this only reminds me of the countless grimaces from both of us through thousands of miles of long distance backpacking. We both equate the attainment of real joy with some grimaces, some discomfort, along the way. Just as often she simply has a serene look, once we get past the first repetitions, even as her muscles provide continued resistance.
I have been reminded lately that both Cindy and I are strong people, capable of handling discomfort in our lives. Maybe some think the practice of palliative care requires an asterisk when associated with us. Yet all humans appear to physiologically benefit from some types of discomfort; maximizing comfort in our lives may do more harm than good. At the least we cannot go wrong with the discomfort of going for brisk walks in nature (the briskness matters in terms of our neuroendocrine system), regardless of the discomfort that terrain and weather might present. And, yes, even the discomfort of vigorous strength training benefits us as well.
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Patients admitted into a hospice program have been diagnosed with a terminal illness. Palliative care to make the patient comfortable then replaces curative treatment. As we neared the time for Cindy to come off hospice, my efforts to maximize her quality of life conflicted at times with the views of nurses and aides regarding her palliative care.
Cindy the hiker weighed around 115-120 pounds; Cindy the mother at her heaviest weighed around 135-140 pounds. Her weight while in this final stage of dementia must be well under a hundred. Though measurement on a scale is no longer possible, the hospice nurse has inferred her weight loss for the past few years from the shrinking measurement of her biceps. That was the last indicator of decline being used to justify keeping Cindy in hospice.
As Cindy’s emaciation became the reason for keeping her in hospice I responded by inserting more calories in her diet. We basically eat the same foods (admittedly, I take bigger bites), with my brain health soup and brain health smoothie serving as our main staple. To Cindy’s daily diet alone I added a granola bar, fruit bar and Ensure. That apparently did the trick of halting her shrinking biceps and there was no longer any measurable justification for keeping her in hospice.
This feeding strategy for Cindy was questioned based on her occasional coughing fits. Since people advanced in dementia are supposed to lose the interest and ability to eat; there was concern I might be force feeding Cindy, which would be against the spirit of palliative care. However, I experienced what a person with advanced dementia refusing to eat was like with my Mom and I rely on this memory to determine when Cindy has given up eating and by extension the will to live. I have not detected that happening yet.
I spend 3 ½ – 4 hours each day feeding Cindy as her focus on eating declines. Adding extra calories to her diet added to this time burden from feeding her. The quality nutrition of her preexisting diet contributed to her will to live for so long, I do not believe the added calories does anything to further that. Ironically, now that Cindy is out of hospice I am shifting back to her original, high nutrition diet.
I share this to emphasize what is important in your loved one’s diet. I know the nutritional content of Meals on Wheels and other diets for the disabled or elderly. They claim to be nutritious while at the same time being convenient to prepare or eat. This is an accurate claim when compared to any fast food diet, but not in comparison to ours. Our diet is my own concoction based on brain health research, but perhaps most closely resembles the well known Mediterranean diet.
Another important element of our diet is food that requires chewing. The importance of mastication for brain health has been researched, but seemingly counters the spirit of palliative care. When a new nurse came to examine Cindy for admittance into a different program, she assumed with obviously no doubt in her mind that I fed my patient pureed foods. Cindy can chew and should chew food as long as possible. The extra comfort for patients, and ease for caregivers or nursing homes, of feeding only foods to sip and swallow erodes quality of life faster.
I recommend highly nutritious and chewable food for quality of life care, as opposed to palliative care, when feeding a loved one. If you can add high caloric intake without sacrificing nutrition all the better, though with my time already spent feeding this is where I have drawn the line.
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“There have been times that I thought I couldn’t last for long But now I think I’m able to carry on It’s been a long, a long time coming But I know a change is gonna come, oh yes it will.” A Change is Gonna Come – Sam Cooke
In March 2019 Cindy had her first and most severe seizure, landing her in hospice care. Our living room also became our bedroom at night, as that was where a hospital bed could be placed conveniently for home health aides to visit. Cindy’s brother built a door to access our porch from the living room/bedroom, where I could place her in an adult stroller. I built a ramp to the porch that allowed me to take Cindy out in the stroller when the weather permitted. Since then nothing much has changed in our routine or Cindy’s condition … until now.
Four and one half years into her hospice care at home Cindy is to be discharged from hospice on Tuesday, September 19, the date of our 37th anniversary. Continued decline must be in evidence to stay in hospice, but Cindy already has declined almost as far as possible. Because Cindy worked for the VNA that currently provides her hospice visits, they came up with inventive ways to keep her on this long, and will place her on hospice again when she takes a distinct turn for the worse. In other words, her next placement into hospice will be during her evidently dying days, when the end looms near.
I once doubted whether we would reach our 30th anniversary. I never considered that we would reach thirty-seven years of marriage, or be in the final stage of dementia four times longer than normal, or be in hospice care ten times longer than normal. This period of hospice care with little further decline has been a testament to Cindy’s will to live and my ability to stay sane and healthy in the caregiver role. Yet now a “change is gonna come,” which begs the question of what will happen next.
Some decisions affecting Cindy’s care will become easier. The prospect of her discharge looming over the past few months created tension over what care was needed for her to be in hospice with what care I felt was best overall. I will describe this further in later blog posts, which relates to another change.
New blog content will be coming, after a couple years of mainly reviewing previous content. Cindy coming off of hospice presents some new challenges, but perhaps also some new opportunities in response to those challenges. New thoughts and feelings during this upcoming phase may provide insights to help potential caregivers. I also will start to deliver videos as I have been promising, for both the Stages of Decline series and other topics.
One change I hope will occur is earning supplemental income to our fixed Social Security. I take good care of Cindy, not so much the house or yard. I pick a project that makes a small improvement each year, but for a while now the condition of the house has been one step forward and two steps back, analogous to Cindy’s dementia under my care for the past 13 years. I will share my ideas and progress for earned income and will welcome your feedback.
Finally, pictures of the present do not do the memory of Cindy justice. Future photos will be of past Cindy smiles or our time spent in nature.
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Cindy and I agreed after her diagnosis to make our experiences public, hoping that our efforts to live well in the face of tragic adversity will benefit others. With that intention I conclude this series about irreversible decline with the Triumphs experienced during the final emotional stage.
I have been able to engage in projects like composing a symphony.
Practicing the symphony for Cindy provides a daily reminder of a special chapter in our lives.
Through my projects and other means I still maintain my brain health.
Maintaining my brain health throughout enables me to keep Cindy at home.
Family and friends provide various types of heartwarming support to us.
Bedsores have been prevented despite Cindy being bedridden.
To this day Cindy still eats well.
Cindy’s healthy appetite indicates a continued will to live far beyond the norm.
Cindy’s will to live has enabled her to achieve her desire of becoming a grandmother.
All things considered, we succeed at living well in the face of tragic adversity.
With the conclusion of this outline the final stage still continues. I suspect more Tribulations await us, but our Triumphs remain gratifying. Being intentional with maintaining my own brain health throughout allowed me to be intentional with a lifestyle for Cindy worth living. By sharing our journey with you we hope that you have gleaned some measure of information and inspiration that guide your journey as well.
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The totality of Cindy’s physical decline created some health and comfort problems for her care. Without any emotional or verbal feedback these Tribulations required guesswork that added to the Trials of her emotional decline.
Feeding Cindy could take as long as two hours because of her lack of focus while eating.
Undetected food sitting in her gums for long periods led to advanced teeth decay.
Failures to swallow liquids, saliva and mucus led to occasional coughing fits.
Being confined to a hospital bed led to hot spots that increasingly took longer to heal.
We dealt with constant turnover of the people assisting with Cindy’s care.
So far I have spent more than 40% of my married life as a caregiver for relatives with dementia.
What is known as cognitive empathy allows one to compartmentalize sad emotions to focus dispassionately on what needs to be done for the care of another person. This type of empathy has to replace emotional empathy for a caregiver to survive the emotional stage of decline and be effective.
You might think that with the list of Trials and Tribulations during this final stage of decline there could be no Triumphs, but there were. In homage to our motto of living well in the face of adversity, I present the Triumphs next time as the final installment.
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All previous stages of decline overlapped gradually with each other, not so with the final stage of emotional decline. In March of 2019 Cindy had her first ever and still most severe seizure. From that moment on her total physical decline was complete and the Trials of her emotional decline began.
Cindy no longer could stand or sit up.
Cindy no longer uttered one word responses to the television.
Cindy no longer stayed alert during our outdoor strolls/jogs.
Cindy no longer smiled.
Because of the lack of expression and alertness, this final stage of decline is in different aspects both the easiest and hardest for a caregiver. I started Cindy’s hospice care, receiving regular assistance from home health aides, while adopting a constant routine that checked all the other caregiver boxes. Yet the lack of emotion from a once warm and joyful person has been the saddest part of this whole ordeal.
Additional Tribulations accompanied Cindy’s emotional decline in this final stage of dementia. Those will be covered in the next installment.
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