Stages of Decline Series Outline: Seventh Installment
Though we associate Alzheimer’s and dementia with cognitive decline, Cindy’s physical decline caused me greater sadness. Known as an Expedition Woman by her long distance hiking peers, and a woman with the best stride ever by her future husband, we continued to go for walks as long as she was able, despite the Trials that occurred.
Cindy’s balance steadily decreased.
The distance Cindy could walk decreased by 60% every six months.
Cindy’s muscle mass steadily decreased.
Cindy’s dentures steadily decreased in health and structure.
Cindy’s control of body movement steadily decreased.
For the most part the lesson to be learned from this ongoing physical decline was one I heeded before learning it. As you seek to make the most out of your time left with a loved one afflicted with dementia, make sure you get to the more challenging physical activities first.
The consequences of Cindy’s physical decline created other heartaches as well, covered in: Physical Decline – The Tribulations.
The video podcast of this will be posted in a few months. Please subscribe to be alerted to each post and video in the series, and to help generate search engine publicity.
Stages of Decline Series Outline: Sixth Installment.
Once Cindy was officially diagnosed with Alzheimer’s we decided we would share our experiences on the Humanity Hiker blog. We faced the customary trials and tribulations of people with Alzheimer’s, but determined we would live as well as we could. That provided a few Triumphs despite our adversity.
After the diagnosis we created a bucket list of things to do.
We agreed to use the blog to inform and inspire others to live well.
Friends and family joined us on our final long distance hike.
I learned that the secret to living well through adversity was joy.
Cindy became the only person awarded the Honorary Triple Crown.
A gathering of friends and family honored Cindy on her 56th birthday.
I was against our primary care provider informing Cindy of her official diagnosis. I already served as Cindy’s full time caregiver, taking care of her needs without her concern, why deprive her of hope? The primary lesson learned from our Triumphs was that knowing the diagnosis allowed us to live life fully, making the most of the challenges we faced, as well as enabling us to share that with you.
Unfortunately, as Cindy’s decline continued new challenges occurred, such as the ones in the next installment: Physical Decline – The Trials.
The video podcast of this will be posted in a few months. Please subscribe to be alerted to each post and video in the series, and to help generate search engine publicity.
<Stages of Decline series outline: fifth installment. Please subscribe to be alerted to each post and video in the series, and to help generate search engine publicity.>
I am shifting the order within each stage of decline to present “Triumphs” last. This better represents our mission of living well despite Alzheimer’s. Every stage represents two steps backwards in terms of decline, yet there remains a step forward for making the best of the situation. Some of the previous outlines will be adjusted for this new philosophy when the video podcasts are presented.
Once we knew that Cindy’s dementia was irreversible from the official diagnosis, we experienced the following “Tribulations.”
Cindy attempted to divvy up her belongings for her daughters to inherit.
Attempts at pursuing her hobbies with the help of others ended up in frustration.
We faced economic hardships as we adapted to our new life.
In anguish over her cognitive shortcomings she suggested I get a mistress.
Unlike our ADT journey, our Pacific Crest Trail journey would bring no improvement.
Early obstacles meant Cindy would not fulfill her dream of completing the Triple Crown.
As a caregiver I learned from these Tribulations what the secret is to living well under the circumstances of irreversible dementia, indeed, the secret to living well under any circumstance. I will share that secret in the next installment: Cognitive Decline – The Triumphs.
The video podcast of this installment will be posted in a few months. Please subscribe.
Stages of Decline series outline: fourth installment. After these outlines are posted I will provide video podcasts of the same themes in a more entertaining and informational format. Please subscribe to this blog to be alerted to each post in the series, and to help generate search engine publicity.
People associate dementia mainly with cognitive decline throughout the affliction, this stage corresponds to when that decline becomes irreversible. The following bullet points reveal the “Trials” that signaled Cindy’s cognitive decline would be permanent.
A year after our hike across the country we still did not know the cause of decline.
I left an important decision up to Cindy that she was not capable of making.
In an effort to give Cindy more independence her condition worsened.
Failing badly on a cognitive test for disability income devastated Cindy.
Cindy was diagnosed with Alzheimer’s a month after qualifying for disability income.
The lesson I learned from these “Trials” is to assume the worst and become the decision maker for someone whose cognitive decline is not improving. The next installment in the series will be “Cognitive Decline – The Tribulations.” The video podcast of this installment will be posted in a few months. Please subscribe.
This is the third outline for the Stages of Decline series. Our experiences as a dementia patient and caregiver spouse are condensed into bullet points to provide helpful insights for others who might find themselves in a similar situation. After presenting outlines for the twelve themes of the series, video podcasts will then cover each theme in a more entertaining and informational format. Please subscribe to this blog to be alerted to each post in the series, and to help generate search engine publicity.
People naturally think that early onset dementia begins with cognitive decline, but there are earlier warning signs in regards to behavioral changes in how people respond to stress. These “Tribulations” bullet points reveal how Cindy’s decline resumed after the walk across the country was over.
Cindy’s “Triumphs” from the walk across America ended with the “Tribulation” of Lyme disease.
Despite chronic stress being eliminated, no further cognitive improvement occurred.
Cindy experienced occasional heartbreaks due to her cognitive decline.
Cindy had few opportunities to socialize.
Cindy had trouble with daily living tasks.
I experienced the heartbreak of false hope.
The most important lesson from these “Tribulations” bullet points is that early onset dementia cannot be permanently cured, but rather needs to be permanently prevented through lifestyle factors. The next installment in the series will be “Cognitive Decline – The Trials.” The video podcast of this installment will be posted in a few months. Please subscribe.
This is the second outline for the Stages of Decline series. Our experiences as a dementia patient and caregiver spouse are condensed into bullet points to provide helpful insights for others who might find themselves in a similar situation. After presenting outlines for the twelve themes of the series, video podcasts will then cover each theme in a more entertaining and informational format. Please subscribe to this blog to be alerted to each post in the series, and to help generate search engine publicity.
People naturally think that early onset dementia begins with cognitive decline, but there are earlier warning signs in regards to behavioral changes in how people respond to stress. These “Triumphs” bullet points reveal that the early cognitive decline which occurs during the behavioral decline stage can be reversed.
We assumed Cindy had an anxiety disorder from too much stress.
We turned to our passion of long distance hiking for a cure.
We chose the American Discovery Trail for its length and towns.
The journey provided lifestyle factors that benefit brain health.
Cindy improved at doing daily tasks, recalling events and being social.
Cindy became optimistic about her future.
The most important lesson from these “Triumphs” bullet points is that dementia during the first stage of decline can be reversed, though a comprehensive shift in lifestyle factors may be required. The next installment in the series will be “Behavioral Decline – Tribulations.” The video podcast of this installment will be posted in a few months. Please subscribe.
This is the first outline for the Stages of Decline series. Our experiences as a dementia patient and caregiver spouse are condensed into bullet points to provide helpful insights. After presenting outlines for the twelve themes of the series, video podcasts will then cover each theme in a more entertaining and informational format. Please subscribe to this blog to be alerted to each post and to help generate search engine publicity for the series.
People naturally think that early onset dementia begins with cognitive decline, but there are earlier warning signs in regards to behavioral changes in how people respond to stress. These TRIALS bullet points covers the unfortunate behavioral changes and conditions that in hindsight signaled the beginning of early onset.
Work conditions created chronic stress for Cindy.
Personal events added a tipping point to chronic stress.
Cindy’s personality was not conducive to handling stress.
Cindy likely has a genetic predisposition for dementia as well, causing early onset.
Doctors misdiagnosed Cindy at the start, claiming she was too young.
One diagnosis misjudged Cindy’s personality and possibly made things worse.
The most important lesson from these bullet points is to identify and minimize the stress in your life. How you or a loved one is handling stress may be an indicator of cognitive decline around the corner. The next installment in the series will be “Behavioral Decline – The Triumphs.” The video podcast of this installment will be posted in a few months. Please subscribe.
During 2023 I plan to take up video casting as a project to keep me sane, starting with a series on different stages of dementia. Each stage will be broken into three sections corresponding to Trials, Triumphs and Tribulations. Until I am up and running with doing videos I first will run through a “Cliff Notes” version of the series with regular blog posts. Here is a brief outline of the upcoming series:
STAGES OF DECLINE OUTLINE
Behavioral Decline
Trials – The problems of stress
Triumphs – Our passion reduces stress and reverses cognitive decline
Tribulations – Cognitive decline resumed
Cognitive Decline
Trials – The problems of an Alzheimer’s diagnosis
Triumphs – Creating and pursuing our bucket list
Tribulations – The distance Cindy can walk steadily declines
Physical Decline
Trials – The problems of immobility
Triumphs – Creative means of getting Cindy outside
Tribulations – The decline into helplessness
Emotional Decline
Trials – The problems of hospice care
Triumphs – Preservation of the will to live in hospice care
Tribulations – The famous smile fades away
By the time I am done with the blog outline I should be ready to go through the series again with video presentations. This material will help with both a documentary and a book planned for the future. After the Stages of Decline series I will move on to other video projects, such as one for planning future journeys.
If you are interested in the series please subscribe to the blog and/or like the Humanity Hiker Facebook page. The recognition will help me out.
In 2022 I blogged about our 2011-2012 walk across the country again, this time sharing the adventure while acknowledging Cindy’s cognitive decline as a motivating factor for the journey. That ended in June and I submitted less than a handful of posts since then, claiming there was little new in our situation to share. Another reason was I had little time to write because my coverage had become sparse. I intend to reactivate this blog for 2023 with two main goals.
One is a series that elaborates on the stages of decline that occurs with dementia, hopefully with a post every month. I would like to use this series as a springboard to get into vidcasting. The information may also provide the foundation for a documentary that a filmmaker is working on.
The other goal is to share with you the logistical planning of future journeys I hope to take. One type of journey will be Pedicab Pilgrimages, with plans to provide rides to mobility challenged children, such as at children’s hospitals. The other type of journey will involve hikes in other parts of the world, encouraging others to: “Love kindness. Build community. Believe in Humanity.” I intend to make the journey planning interactive, providing readers the ability to offer suggestions and help shape the course and activities of journeys.
Photo by Jordan Rose Lee
A blogger is supposed to post 2-4 times a week. That will not happen as I continue my current caregiver journey. While I hope to have more coverage for Cindy and more time for myself in 2023, I anticipate posting at a rate more like 2-4 times a month.
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?
Photo from Tammy Johnson
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.
