PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Thursday, August 6, 2015

Manifesto For Radical Inclusion Continued

In his book x, Dr. Al Power discussed "Radical Inclusion" for people with Dementia/Alzheimer's. I wrote (thought through) the concept in a previous post. At the end of the post I link to Dr. Power's book. I have been discussing this topic with fellow blogger Kate Swaffer as well:

I wrote a letter to Dr. Power and he replied. Both are included here as well as my follow up letter to his reply:

Dr. Power I fully support your concept but it causes me to have to look at my situation as a caregiver and see how Full Inclusion fits in. My life partner Gregory (together for 40+ years) was never able to share with me what it felt like to deal with his Dementia/Alzheimer’s so I had to base it on my careful observations and knowing him so well. Kate Swaffer first began letting me know what the story would be like from the side of the person affected and now your work continues to do so. Thank you. I wrote a pretty long piece about my thinking.

• • •

Hi Michael,

I thank you for taking up the challenge, but I think your interpretation focuses much more on abilities than the manifesto intends. People commonly think of those with dementia more along the lines of what they can do, or what they can remember, rather than who they are. I never meant to suggest that a person could DO all the things he used to be able to do, but that he have the ability to be present and engage to the best of his ability when desired, and never be sold short by stigmatized views and lowered expectations that exclude people without even considering if they might benefit.

Kate will tell you of her frustration with most "dementia-friendly" community initiatives that do not even ask the opinions of people living with dementia--something that would be reprehensible with any other group of people.

My book, Dementia Beyond Disease: Enhancing Well-Being is full of stories of people who were successfully engaged and exceeded people's expectations, improving their lives (and often their abilities!) as a result. Another example is the movie Alive Inside, which uses the power of personalized music to reawaken abilities and engagement, and must be seen to be believed. My book even shares the story of a man who could not speak or indicate any understanding or voluntary communication who, through the sensitive attention of his care partners, was able to "decide" to withhold a feeding tube. There is no pill that can do the things I describe; and there are many that can stifle this potential, even in those who do not appear sedated.

So yes, I meant to challenge and be provocative. But I consider the segregation and exclusion of people with dementia to be the last bastion of the civil rights struggle. For many more examples and more thorough (and less "in-your-face") explanation of enhancing well-being, check out the book.

Thanks again for your feedback.

Al Power

• • •

Thank you for your speedy reply. Yes, I know “Alive Inside” and it is an amazing testament to what people are able to do if motivated, encouraged, and most of all allowed!

I guess with Gregory I never stigmatized him and never allowed family or friends to either (although most of them didn’t do so without me needing to intervene.) I always held high expectations for what Gregory was able to do until he demonstrated that after an abilities coming and going and finally disappearing or the stress and frustration was too much to keep trying, then I was able to respectfully support him. 

I never lost sight of who Gregory is in the sense of him as a person. He is still my best friend, life partner, lover and the man I have been committed to for over forty years. The soul, the spark is still there, it just shows itself rarely or in different ways. It is up to me to see what he is able to show! 

Instead of communicating we “interact” and that is just as good. Even though his language is minimal we can let each other know that we love each other “more than ever” as started saying from the day we received his diagnosis of Dementia, probably Alzheimer's.

Now, I’ll say, “Gregory, you know what?” 

Sometimes he will answer right away or on the second or third prompt, or sometimes just with eye contact (which also is not easy for him), “What?” he will ask.

“I love you!” I will reply.

Sometimes he'll say, “I know.” Sometimes, “OK.” Sometimes a nod of the head or more eye contact.

Then I say, “You make me very happy!” And most of the time he will get tickled and we both laugh at this.

When I ask for a kiss, I will give him one. Sometimes he leans toward me and gives me one. Sometimes he makes “Mmmmmm” while ending with a loud smack. Once he finished the kiss, backed off, and then said, “More?” leaning in again.

Often we will just bump foreheads and I will say, “Boink!” and he will repeat “Boink!” Other times when his wheel chair hits the door frame, he will say “Boink!” and we will both laugh.

Once in a great, unexpected while, Gregory will out the blue look at me and say, "I love you." or something like, "You are so nice." That usually brings tears and a big hug for both of us.

Gregory is no where near the man he used to be skillwise, but he is still the person I love the most in the world and I never miss the opportunity to let him know this as many times a day as I can.

Thanks for your feedback Dr. Power and your fight for equality, I join you!


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