Dementia and the Shawshank Redemption

 

For those who prefer to listen to this blog post:

 

When you find strength to tell someone you have dementia, the response you sometimes hear is, “Oh, you just forget things, right?” I don’t fault them because that’s usually what people know. That’s what they see in syndicated media, on the local news, in social media or most anywhere else they generally go for information. If you aren’t forgetful, they may instead make a casual remark while unconsciously dreading what they’ve heard about the late stage progression of the disease. This, a disease everyone fears.

 

So let’s clear this up a bit, shall we?

 

Dementia can cause memory loss; some experience that type of loss more than others. The set of brain diseases known as dementia, which includes Alzheimer’s among hundreds of other forms, at least today is fatal. Throughout its progression, the manifestations of this disease may also cause:

  • An inability to multi-task
  • Loss of the ability to get words out, at times or all the time
  • Getting lost in moments, sometimes for several minutes – also known as: Brain Fog
  • Anger, frustration, anxiety and nervousness
  • Not being able to complete even simple tasks. The toughest to lose are those accomplished seamlessly and without thought before diagnosis
  • Looking at a familiar face and not knowing the persons name
  • Not being able to get a normal night’s sleep
  • Looking at any object you’ve used in the past on a daily basis and not knowing what’s it’s used for now – also known as: Jamais Vu, read more at http://www.lisabcapp.com/blog/reflection/
  • Depression, and I’m talking about serious depression
  • Unexpected changes in your body such as daily muscle spams, the kind that can make you jump right out of your bed at night
  • Tremors and body sweats
  • Having to use a cane because you never know when you’re going to lose your balance and fall
  • The inability to be in a room where multiple conversations are going on at the same time (an example, being in any restaurant these days)
  • Being startled at the drop of a hat or for no reason at all
  • No longer being able to read a book
  • No longer being able to count money or do simple math

 

And then there are the things most people take for granted, things dementia ultimately strips away:

  • Your independence, no longer being able to drive a car
  • Your self esteem, no longer being able to follow simple conversations
  • The gift of language by misinterpreting what’s told to you. Your brain can hear something completely different than what was said
  • Losing slivers of time and with each loss, a piece of your identity
  • People may assume you are no longer capable of contributing to society in meaningful ways as soon as you disclose your diagnosis
  • Listening to people say, “You don’t look or sound like you have dementia,” or upon sharing issues you face with this disease, hearing the stinging dismissal, “Oh, that happens to me all the time”
  • Assumptions made that you are no longer capable of learning new things
  • The realization that some people begin to treat you differently, talk about you as if you aren’t in the room or worse completely disappear from your life, feeling too ill at ease to continue engaging with you

 

I’ve experienced each one of these and more I cannot bear to mention, they are just too raw to share.

 

Dementia is more than just aging, forgetfulness or memory loss. No one knows how long the progression of this disease will take for each person diagnosed, that’s in spite of the many charts you’ll see showing the “stages” of dementia.

 

Through all this, I choose to fight. My goal is to educate others that dementia is much more than most think. Following diagnosis and by sharing our stories, we can help others gain a level of understanding about what this disease forces us to encounter, to work around, to think and to feel.

 

After a dementia diagnosis we are still here, we are still able to contribute, we are still able to learn and we still have a voice. Our voice deserves to be heard and to be engaged in anything and everything that pertains to us, for as long as is possible.

 

I may take a hiatus from time to time because this disease can knock me down a bit. But trust me when I share my favorite line from Stephen King’s story of The Shawshank Redemption; we need to “get busy living or get busy dying”.

 

And I chose to get busy living!

 

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This is an excerpt from writing by my friend Mike Belleville. Mike is living well with dementia (those are his words) and is supported by his lovely wife Cheryl, who is caring with grace by his side (those are my words). Thank you Mike for sharing this insider’s perspective of what dementia looks and feels like for you.

 

Mike was diagnosed at the age of 52 with younger onset dementia and at the age of 57 his diagnosis changed to Lewy Body dementia. Mike and Cheryl are strong advocates, along with many others, committed to educating the rest of us about living and caring with dementia. I’m honored to know Mike & Cheryl and to feature their perspectives on dementia in my writing.

 

Whether you’re diagnosed, caring, supporting or just interested in learning more to help others who face this set of brain diseases, it’s critically important to educate yourself with facts.

 

  • 5.8 million Americans today live with Alzheimer’s dementia, the most common form but only one of the hundreds of dementia diseases diagnosed
  • Approximately 200,000 Americans have younger-onset Alzheimer’s, that means they have been diagnosed under the age of 65 and sometimes as young as 40
  • Every 65 seconds someone new develops America’s most expensive diseases – dementia and Alzheimer’s
  • With the baby boom generation reaching age 65 the estimates for Alzheimer’s growth could triple in a generation, impacting many more diagnosed and their loved ones who will bear the brunt of care

 

Amid these painful truths we are thankful for a substantial increase in research funding over the last few years. Dementia research is now progressing in the areas of detection and prevention, but we still await progress in treatment and cure. The brain is a complicated organ, so it takes time and continued resource for even more progress to be made.

 

Diagnosis today is a scientific reality instead of an observation proven only through autopsy, which was our reality, just a few short years ago. And we’ve learned in prevention that what is good for your heart is good for your brain: https://www.beingpatient.com/ways-to-prevent-dementia-who/

 

I’m hopeful today, more hopeful than I was throughout my mom’s 18-year journey through dementia. I’m hopeful for my friends Mike and Cheryl that research being conducted today will find the answer to treatment and cure for their journey.

 

You can join Mike and his global counterparts who are committed to removing stigma and misunderstanding about dementia and Alzheimer’s diseases by following them at Dementia Action Alliance:

 https://daanow.org

Or reach out to Mike directly at:

mjksdad@gmail.com

 

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