7 kinds of therapy i don’t want when i’m living with alzheimer disease

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When I am living with Alzheimer disease, which I expect I will be one day, I want to do the things I love to  do for as long as possible, and to be offered the opportunity to try new, engaging and enriching activities that will fill the last chapter of my life with joy and happiness. I don’t wish to be labelled or “therapized,” or treated like someone who is less than human, or worse like an object with not more value than a chair.

So please, future care partners, help me to live until I die: interact with me, support me, invite me to grow and learn and to engage life with purpose and meaning and please, please, please don’t stigmatize it by calling it “therapy.” If things keep on as they are, people who live with dementia will soon be getting “food therapy” every time they have a meal! And “sleep therapy” when they go to bed at night or have an afternoon nap. It’s completely ridiculous.

1) Pet therapy

I adored my little cat Pia Roma, who had lived with Mom before she became my treasured housemate. The pic above is of Pia and I having a cuddle on the morning of the day she died (June 29, 2018). I hope I will have animal companions of some sort near me until I too say goodbye to this place. Taking care of and loving an animal gives people of all ages purpose and joy. Purpose and joy are important. I love to have animals around me; I see no reason to label being with animals “pet therapy” if and when I’m living with dementia.

2) Music therapy

They say music is the universal language. It connects people, speaks to them in special ways, and touches them at their core. I experienced its powerful effects first hand with Mom. Through music, I learned many things and found much joy. While I think I will love to continue to experience music in many forms when I live with dementia, I don’t see why enjoying music should be described as “therapy” simply because my brain is changing.

3) Art therapy

I create art. I’m not a painter or a sculptor or a potter. At least not yet. But I have created and I continue to create multimedia works that bring me and others joy and happiness. I hope that if I ever come to live with dementia that I’m able to continue with the artistic activities I do now. Why should those same activities be labeled “therapy” if I live with dementia? The word therapy has implications I don’t like and I’ll thank you kindly not to use it when I’m living with dementia.

4) Doll therapy

I never played with dolls. Never had children. Not interested, no thanks. But if I did love babies, and playing with dolls as a person living with dementia made me feel young and wonderful and happy, why would it have to be called “therapy?” Why not just say every human being needs to feel connection, love, purpose and meaning and enjoying dolls, or stuffed animals or whatever, are other ways of achieving that?

5) Poetry therapy

i love to write and make words rhyme,

in fact I do it all the time!

so stop the stigma if you please,

just because my brain’s diseased.

It’s writing. It’s poetry. It doesn’t suddenly become “therapy” because one has a changing brain.

6) Exercise therapy

Seriously? Exercise therapy? With a few exceptions, exercise is just plain good for all of us, most of the time, no matter what condition we’re in.

7) Gardening therapy

Ummm. Please. See 6) above.

Come to think of it, when I’m living with dementia, don’t give me any kind of therapy at all. Support me in doing the things I’ve always enjoyed and in exploring new ways of creating purpose and joy in my life. Yes, by all means do that. But don’t call it “therapy,” because I don’t want to be stigmatized and have labels applied to who I am and what I do when I live with dementia because I will be the person I have always been only in a new, different and equally beautiful way.

let me shine: a dementia rhyme to open minds

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5 things I never knew until I sang with my alzheimer mom

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4 Comments

  1. I love this. Words are powerful, and we don’t need to complicate the concept of care with words that “prescribe” the human right to purpose and pleasure. It’s about enabling and empowering, not treating or managing. Taking on the word “therapy” was good therapy for you, wasn’t it Amazing Susan?

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