I read and hear a lot about what a terrible disease Alzheimer is.
I think we need to work hard at changing this perception for the benefit of the people who have dementia as well as the sanity of those who are their care partners. My personal experience is that while the disease is certainly horrible and tragic, there are moments of great joy and healing to be found in the journey.
I have learned as much as I have lost in the process of navigating the choppy waters of the last decade or so as I have become more acquainted with dementia and people who live with it.
I wrote in another blog post:
“Being doesn’t require remembering, thinking or doing; and recognizing love and compassion doesn’t require recognizing individuals.
It helps that I see people with dementia as engaging, vibrant and fully human beings rather than as lesser versions of themselves or worse, as empty shells.”
Life itself is a death sentence. But we don’t grieve the birth of a new life, we celebrate it. We would all be well served if we started looking at all types of dementia in a different way. I’m not saying dementia is not heart wrenching and soul destroying. It is. But the people who have it are still people, and they’re not dead while they’re still alive.
Advocates such as Kate Swaffer, Rick Phelps, Harry Urban and others who have been diagnosed with dementia are adamant they should not be dismissed because of their diagnosis. On the contrary, they actively contribute to the ongoing conversation about the disease and how they are the ones best positioned to educate the rest of us.
Let’s help people with dementia live the best lives they can until the end instead of whingeing and whining and moaning about how sad we feel about what we perceive, perhaps mistakenly, our collective losses to be. Let’s focus on how we can make life with dementia full, engaging and rewarding no matter which side of the care coin you find yourself on.
End of rant. Or beginning of a bigger rant, depending on what happens…
P.S. Some interesting quotes and thoughts on life and death here.
https://myalzheimersstory.com/2016/08/20/dying-with-my-mom/
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My Alzheimer's Story 
Susan,
You are so right! The comparison to life being the beginning of death is eloquent! Gregory’s Alzheimer’s has been as joyful as it has been devastating. He has given me so many life gifts and I him. I love him more than ever. That is, in fact, the name of the living trust we set up when he first received the diagnosis of Alzheimer’s: The More Than Ever Trust. If I would spend all my time grieving our loss and remembering the man he was, instead of living with and enjoying him today, I would be missing so much. A recent poem demonstrates what I call my Daily Mini-Miracles: http://mhorvichcares.blogspot.com/2015/03/boink-love.html
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Beautiful poem Michael. I especially loved “Joy carried beautifully, fragilely
on the broad shoulders of grief.” Those few words captured perfectly 🙂
And you are so right when you say: “If I would spend all my time grieving our loss and remembering the man he was, instead of living with and enjoying him today, I would be missing so much.” This is the kind of attitude that can reduce everybody stress and increase everybody’s love ❤
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Glad I found you Susan,
Michael
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Likewise I’m sure 🙂
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I love helping others discover moments of joy. I discovered the power of the simple things during my volunteer work at a local adult day care. I was inspired to share this so I wrote this article: http://togetherinthis.com/moments-of-joy-enrich-carepartnership/. I also just interviewed Harry Urban about his #UnitedAgainstDementia movement and the article will be out soon sharing his vision for a friendlier dementia world.
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That’s a great article Mike, thanks for sharing it. I think purpose remains important even when it would seem that it might not. I look forward to your interview with Harry.
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You hit the nail on the head. Alzteimer’s changed my mother’s life and our relationship for ever, and while sad in many ways, the fact that she is more loving and we are closer than we have ever been since her diagnosis. Just having the disease does not mean a person’s life is over!
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Yes. Exactly!
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Again. You write the words that are engraved in my soul, reflecting the experience of having shared, lived, and loved individuals that were confronted with challenging diseases and or situations. In order to improve “quality of life” of people with dementia or other challenging diseases or situations, we must shift our perceptions and ask ourselves how “we” can act differently, get personally involved in actions that will promote their well being, dignity and “quality of life”. In so doing, they increase my .. our ” quality of life”.,, The diseases are terminal like all lives are terminal. We are on the same boat! Let’s make the best of this journey .
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“we must shift our perceptions and ask ourselves how “we” can act differently, get personally involved in actions that will promote their well being, dignity and “quality of life”. In so doing, they increase my .. our ” quality of life”.,, The diseases are terminal like all lives are terminal. We are on the same boat! Let’s make the best of this journey.”
Yes. Yes. And yes. Thanks for sharing your wisdom Johanne.
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