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I created this web site to first tell the story of a 5,000 mile walk across the county along the American Discovery Trail, with posts from May 2011 – May 2012, and retold that journey recently from a different perspective. … Continue reading
The Special Report for the most recent issue of the AARP Bulletin was titled: “The Future of Alzheimer’s.” After glancing through the content I feel compelled to remind folks that I told you so. On page 17 of the bulletin the following quote was featured:
“Controlling neuroinflammation is at the forefront of new drug ideas for Alzheimer’s. In 2023, there were more drugs in human trials for inflammation than for any other target.”
After Cindy was officially diagnosed with Alzheimer’s in the Fall of 2012 I set my Google Alerts to “Alzheimer’s” and “brain health.” The Alzheimer’s alerts typically consisted of press releases targeting investors more than researchers. Every new discovery or drug test on mice promised hope for combating the disease in humans, except that all the focus was on beta-amyloid plaques and none of the successes transferred to human subjects. At best, cognitive decline slowed for a few months.
I found the brain health alerts tremendously more informative. I discovered there were super agers with amyloid plaques that never had dementia, plus several causes of dementia that did not involve amyloid plaques. The common pathology with all the causes was instead the oxidative stress that results from inflammation and occurs inside the cells. Perhaps most importantly I discovered that brain health depended on a range of lifestyle factors that reduced oxidative stress.
I challenged the conventional research and beliefs in a 2016 blog post titled: “The Alzheimer’s Murder Mystery.” For almost a decade my advocacy for brain health focused on lifestyle prevention rather than medical cures, maintaining that even if a real medical cure should be found, lifestyle prevention still should be the preferred choice if that is an option.
The AARP Special Report almost comes to this same conclusion. Almost. It reports on the disappointments of the latest round of drugs such as lecanemab. It acknowledges that healthy living provides hope. It acknowledges that prevention is key. Then in the penultimate paragraph AARP reports: “Prevention studies using drugs are gearing up.” The success of statins with lowering cholesterol is offered as an example of the future hope for Alzheimer’s.
Sigh.
As a person in a stressful situation with a family history of hypertension I am concerned about blood pressure. Health care professionals from doctors, to nurses, to phlebotomists to CNAs have recommended I take statins when my blood pressure was high. Not a single one ever suggested lifestyle changes. Not one. Yet I relied only on lifestyle changes to lower my BP from 175 over 125 to as low as 113 over 78 within a month.
I am not against medical treatments, but I am against oxymorons like “preventive medicine.” The use of medicine is to correct the way your body functions. In that regards medicine is a cure, even if also seen as preventing something fatal. “Living well” is purely a preventative strategy, though one that does not generate as much income for the pharmaceutical industry.
“Preventive” medicine prevents one affliction; living well wards off almost all afflictions. Using medicine to “prevent” one thing may mask the way you need to live your life to prevent other additional health problems. Ultimately, you may need to take more “preventive” medicine to address those problems. Indeed, a “preventive” medicine for one affliction may be the cause of another. I am curious as to how many people that rely on medicine for “prevention” end up taking a multitude of pills.
The focus now on inflammation causing Alzheimer’s I believe to be the right one. Considering that stress causes inflammation, should your prevention strategy be making life less stressful for yourself? Or will you wait until a “preventive” pill is discovered? Choose wisely.
A few biochemicals produced by our bodies enhance brain health. Neurotransmitters send messages within our central nervous system, while hormones circulate throughout the larger, peripheral nervous system. Sometimes the same biochemical serves both functions. Rather than producing them on a continual basis, we need to experience particular moods or behaviors in order to benefit from the following biochemicals:
Dopamine
Dopamine controls memory, learning, concentration and sleep. Dopamine also motivates and rewards the brain for healthy behaviors.
Serotonin
Serotonin enhances our mood and sleep. Adequate serotonin levels help stave off depression.
Endorphins
Endorphins block sensations of pain and stress, thus enhancing feelings of wellbeing.
Oxytocin
Oxytocin engages people in social bonding ranging from sex to empathy. It can reduce blood pressure and cortisol levels while enhancing wellbeing.
BDNF (Brain-derived neurotrophic factor)
BDNF stimulates the growth and plasticity of neurons and brain tissue.
Releasing only one of these biochemicals does not necessarily benefit the brain. The “rush” from metabolizing sugars releases only dopamine, rewarding the ingestion of our body’s direct energy source, a necessary function but easily one that can be done in excess. In contrast, the “high” felt from brisk exercise releases all five of the biochemicals listed above. You want to feel the “high,” not the “rush,” for the sake of brain health, and several forms of being positive can help you achieve this.
Being positive enough to enhance brain health does not happen readily.
*Appreciation does not provide the benefit of feeling “high” on life from gratitude.
*Admiration does not provide the benefit of feeling awe from nature, music or kindness.
*A sarcastic chuckle does not provide the benefit of a jovial belly laugh.
*Pausing to reflect does not provide the benefit of meditation.
*Completing a task does not provide the benefit of fulfilling a purpose.
If you suspect you never felt a brain health “high” before, imagine the rush from dopamine being tempered by the calmness of serotonin and the stress relief of endorphins and oxytocin, along with the sense of heightened brain function from BDNF. Perhaps euphoric describes the mood better. I recommend vigorous exercise, as much as that may sound unpleasant to some, as the most reliable way to experience this mood. Once you know what the mood really feels like, then the sufficient intensity for being positive might be easier to achieve.
One cannot easily incorporate a mood into a routine. You can schedule exercise or a game night, but not when you will have a good belly laugh. I suggest instead that you focus on eliminating negative emotions from your daily routine. Marketing in general plays on your negative emotions to sell you a product, an idea or a party platform. You may think that a social media meme or news anchor is telling you what you want to hear, but if they do so by making you angry, fearful or entitled they could care less about your brain health, only that you buy what they are selling.
Fortunately, chances are that if you incorporate being active and social into your routine, the more intense expressions of being positive will follow along.
Being active takes different forms. Much of being social requires being active, and we all know the importance of exercise. As for that, this year I resumed regular stair workouts this year. With the expanded coverage I had for 2023 I got outside more in winter and exercised only on those days. The result was weighing the heaviest ever going into summer and now going into 2024 as well. As tedious as they may be, the stair workouts should remedy that.
Finger dexterity requires the most brain power of any physical activity. Early on in my Google Alert feeds for brain health research repeatedly reported on the brain health of people who knit. Knitting is not my thing, but music is. Lately research has resurfaced once again confirming the correlations into old age between both singing and playing an instrument with vibrant brain function.
Practicing and playing guitar in Cindy’s presence has long been part of my routine and will continue. What about you? Do you draw? Sculpt? Knit? Quilt? play an instrument? Choose any old or new activity requiring finger dexterity to incorporate into your daily routine.
Research indicates that learning new software, even video games, contributes to brain health. I need to learn intricate video editing software in order to achieve my goal of providing video podcasts on this blog’s content. The results will be staying mentally active for me and better entertainment for followers. I may need the whole year to get the necessary training in, but a routine should develop that allows me to post videos regularly once I do.
The benefits to my brain health from creating video podcasts will substitute for the benefits that composing a symphony previously provided. Had I been able to satisfy my travel ambitions by now I would be learning new languages, revealed to be a particularly effective mental activity. What about you? Choose something new to learn befitting your own nature and situation.
I also am engaged in a mental activity that may take 10-20 more years to complete, a series of essays called “Unenlightened Wisdom.” The essays will be compiled into five collections and additionally feature cartoons by the award-winning cartoonist of “Speed Bump,” Dave Coverly. By the end of this year I hope to complete the first collection that focuses on brain health and will provide a few advanced excerpts on this blog. Those who subscribe to the blog will be sent the introductory essay for the collections when it is ready for the public.
I view the “Unenlightened Wisdom” essays as my life’s work, drawn from my unique combination of extensive experiences as a caregiver, long distance journeyer and academic. They give me purpose, a most important activity for remaining vibrant as we age. What about you? Engage in a vocation, projects or hobbies that provide stimulating purpose to your life.
This covers being active with the mind and body. An active soul depends in large measure upon being positive, the next topic in this series. Please like and subscribe if you find this content worthy.
Three types of social conditions benefit brain health: intimacy, altruism and fellowship. “The Joy of Sex” is aptly titled, but even the intimacy of prolonged hugs can release the neurotransmitters that give you a joyful high. As long as Cindy could stand up, at least with my support, we “danced” and maintained intimacy that way. When I no longer could stand her up I held her in my lap 3-4 times a day. I suppose the nightly goodnight kiss on her forehead counts as well.
Altruism has long been confused, even distorted, to the extent that you even see terms such as “toxic” or “narcissistic” altruism. The type of altruism that provides brain health benefits, and I would argue the only true definition of altruism, are truly selfless acts of kindness. You are more certain to get a joyful high from helping a complete stranger down on his/her luck, whom you will never see again, than from helping a friend or buying coffee for the anonymous person in line behind you.
Helping friends provides brain health benefits when you expect that they would also help you. This general reciprocity benefit applies as well to people in your social sphere that you really do not know, but trust them to return kindness if needed in the future. Altruism exists independently and in addition to general reciprocity because of empathy. In feeling the troubles of others we have an instinct to alleviate those troubles with no motivation for reciprocity or even to be recognized.
Empathy alone does not provide a joyful high. In fact, if you continually felt sorrow for another without any recourse that likely would undermine your brain health. Roughly 98% of humanity has the empathic ability to feel the joys and sorrows of others, but this enhances brain health only when converted into selfless action. Those who lament being an empath either have no recourse to act, or they act but feel underappreciated.
I avoid the downside of empathy with Cindy by channeling emotional empathy into acting upon her care. Cindy is no stranger, but neither do I expect kind acts from her in return. I act because preventing her sorrow elevates my joy. In a series of essays I am writing under the title “Unenlightened Wisdom” I go into further detail about how different types of empathy and kindness relate to brain health, with links to pertinent research.*
This leaves fellowship as the main challenge for being social in my caregiver situation. One means of fellowship for me has been with the people who provide coverage as aides or volunteers. I usually spend a little time chatting with them before they take over, even more time if I just finished a cup of coffee before they arrived. So far we have outlasted sixteen people who helped with Cindy for a year or more. Now that we are beyond terminal care and our situation appears permanent I must consider this turnover to continue. Please consider becoming a volunteer companion or even a part time aide through state funds that keep disabled people in their homes.
Just months before covid struck I held three game nights with different cohorts of friends. This brought a good measure of joy into the home and hopefully I can revive that joy moving forward. I aim to host game nights with different cohorts of family, neighbors, hiking buddies, former classmates, you get the picture.
Usually I hike alone for at least five miles at a time in the “off season,” when Cindy must stay indoors, but this past year I much enjoyed hiking on two occasions with a friend. I would like to do this more regularly now if possible, even throughout the year. Maybe, just maybe, I also can swing an overnight backpacking excursion if I get the coverage. Here is a shout out to locals with fairly good stamina, in addition to our long time hiking buddies in the region.
For years now I perform with my guitar for an audience of one. If I have another phase of life beyond this one I hope to perform for others in venues known as home gigs. Becoming a wandering bard fits my nature perfectly, so why wait? If you live in the area, how about inviting me into your home to perform for you and a few of your friends? I ask only for a delicious home cooked meal as compensation (pizza or other takeout welcomed as well). My repertoire consists of multimedia movements from my American Discovery Symphony, original songs from my former band “The Bards of Balance,” and covers of songs that I consider to be progressive folk.
Leave a comment if you are interested in the fellowship of game night, hiking or hosting a gig. I will provide notice of these social strategies on Facebook as well. Perhaps this gives you a few ideas for your own strategies to be social and maintain brain health.
*When my Unenlightened Wisdom essays are ready for the public I will provide a copy of the introductory essay to subscribers of the blog.
Caregivers for spouses with dementia are six times more likely to get dementia themselves. Such caregivers have higher levels of stress and depression, and lower levels of subjective well-being. My contrarian nature causes me to view that as a challenge rather than a threat. Of particular note to me were the autopsies done on superagers that revealed the presence of beta-amyloid plaques, long thought to be the culprit for Alzheimer’s and still the marker used for the disease.
The research done on the common attributes of superagers and people who live in blue zones reveal that they engage in positive social interactions, with the parts as valid as the whole. That is to say, superagers commonly tend to be positive, social and active even in ways that do not combine the three. This provides hope for people like me with a family history for dementia (my mother and oldest brother), while also taking care of a spouse with the disease. Finding ways to be positive, social and active have been my goals for maintaining brain health.
Now that our situation technically shifts from terminal to indefinite my strategies for beating the odds and becoming a superager must adapt accordingly. Upon further research I believe now that joy is the key to brain health. There are ways that being positive, social and active each contribute to living joyously. In doing so these attributes release a suite of hormones and neurotransmitters benefiting the brain. There is a significant difference for brain health between behaviors such as helper’s “high” that release dopamine, serotonin, endorphins and oxytocin, and a sugar “rush” that releases only dopamine.
Many “self help” guides ironically provide specific details as to how you can help yourself. Being positive, social or active all releasing a suite of biochemicals for brain health thwarts specific guidelines. Having different natures and life experiences prevents any two people from following the same formula. We each can and should do “joy our own way.”
In this series for thriving beyond terminal care I share my own plans for the new year and new normal to become a superager. Use them merely as an example for brainstorming your own, truly self help guide to live joyously. If you find this series or any other posts helpful please like and subscribe, as that will call other people’s attention to this content, as well as help me in the long run.
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.
Please subscribe to the blog, please “like” individual posts, to help spread whatever information or inspiration you might find here.
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.
