HUMANITY HIKER

Stages of Decline Outline:  Final Installment

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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Stages of Decline Outline: Eleventh Installment

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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Stages of Decline Outline:  Tenth Installment

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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Stages of Decline Outline:  Ninth Installment

• We came up with means for Cindy to be mobile outside.
• Friends and family provided a supportive network.
• I always could make Cindy smile.
• Cindy’s mind stayed in the present.
• I was able to manage our finances.
• I researched and practiced good brain health habits.
• I kept my blood pressure down through lifestyle factors only.

The lesson to be learned here is another life lesson which can be broadly applied.  Perseverance and an active, positive social network are the keys to any kind of success, including caregiving.  In particular, a caregiver needs to persevere with creative problem solving for ever changing conditions, often with the necessary assistance of supportive friends and family.

If you can do that; if you can persevere with the help of others to find new ways to live well in the face of adversity, then you can experience Triumphs even during this tragic period of decline.  However, the decline will continue as you enter a final stage.

That will be the topic of the next installment:  Emotional Decline – The Trials.

Stages of Decline Series Outline:  Eighth Installment

Cindy’s steady physical decline correlated with ever changing conditions in other ways as well.  Both Cindy as patient and myself as caregiver experienced added Tribulations tacked on to the Trials of her physical decline.

• Cindy’s ability to say names and talk steadily decreased.
• Cindy’s ability to sit upright without support decreased.
• Cindy could not be left alone for long.
• I realized our bucket list could not be completed.
• Our finances became tenuous.
• My blood pressure started increasing.

The lesson learned from these Tribulations, particularly the stress and increasing blood pressure, was that of the “oxygen mask.”  I knew I had to take steps to preserve my own health first and foremost for both of us.  My blood pressure became my “canary in the coal mine” and I acquired a blood pressure monitor that was crucial with keeping me on task.

By checking all the boxes necessary for maintaining my own health, I could persevere with both of us living well in the face of our tragic condition.  That will be the topic of the next installment:  Physical Decline – The Triumphs.

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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.

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<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.

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