The Conversation Continues

Lynda replies to Kate's post:

A bit like “meaningful activities”? O dear…

To me, “therapy” connotes an intervention (usually led by a professional) with a healing purpose. Pilates is therapy for me, physically, for example, whereas dancing is simply something I love doing. Perhaps there’s a monetary element too: Pilates costs, as there’s a professional & equipment involved, whereas dancing is free. I pay for “therapy”.

I’ve often wondered about “activities” too. I’m pretty sure that term stems from “activities coordinator” job roles & “activities of daily living” (ADLs) but there’s a concept of “filling in time” that doesn’t sit comfortably with me.

It took me quite a long time to understand that just “being” is often enough for the person I love who is living with dementia. Yet I also know how hard it is for her to initiate anything, that she can end up bored, unstimulated, even agitated if nothing happens around her. So do I “engage” her in “activities”? Nope. The reason is that if I lead, say if I pull out some art stuff & suggest she do some drawing (which used to be one of her passions) she’ll look at me as if I’m some stupid teacher! She’ll see right through my intent, i.e. to “keep her busy”.
 
But if I’m cooking & she comes over to have a look, she may end up doing something with me…that’s living, it’s not an “activity” because there is no expectation of her.

I think it’s the power dynamic that defines who is doing what, to or for someone. Living is being with. Therapy is doing to and for. I’ll just scrap the term “activities” entirely – it’s demeaning.


My reply:

WELL SAID Lynda. I think you hit it on the head with therapy is ... "the power dynamic that defines who is doing what, to or for someone. Living is being with. Therapy is doing to and for." 

I believe that doesn't and shouldn't make the use of the words THERAPY or ACTIVITY incorrect or distasteful. As I commented to Kate, if we look at DEMENTIA as a DISABILITY, and if we agree that it is a RIGHT for people living with Dementia to be provided support which remediates accomodates LIFE SKILLS, then helping to provide alternate and corrective skills does seem to become THERAPY, especially when in a facility by trained personnel.

At home. I agree helping you cook ... is just life. At home with a loving partner, cooking is therapeutic, fun, interesting, engaging but it is in reality is just "cooking," no aditional label needed. 

At the memory care facility, cooking experiences on Tuesdays from 1:00-3:00 might well be called an activity. If specially trained people were involved in helping a person develop new skills in cooking which were safer and which met their ability level, wouldn't that be therapy?

“The difference between the right word and the almost-right word is the difference between lightning and a lightning bug.”
— Mark Twain

Am I being picky about language use? Maybe. But I am afraid that if we begin to think that never using words like THERAPY or MEANINGFUL ACTIVITY will help, we might be wrong by not looking at the finer points of Dementia Care and the really necessary changes like adequate support from doctors, better training of caregivers (home and institutional,) other changes in use of hurtful language, more funding of not only research in disease cure but also in best practice care giving. 

Also, many of these problems we are trying to address also apply to seniors in need with or without the diagnosis of Dementia. My problem is I always try to work with perspective: gray vs black and white. That makes me wordy!

Just to reveiw, the following links take a closer look at guidelines for Dementia language use.

"Respectful Disability Language: Here’s What’s Up!" (By Kids As Self Advocates (KASA) is a project created by youth with disabilities for youth. Kind of like 'Out of the mouths of children!" 
http://www.aucd.org/docs/add/sa_summits/Language%20Doc.pdf (opens in a new window.)

National Disability Union in Ireland: 
http://nda.ie/Publications/Attitudes/Appropriate-Terms-to-Use-about-Disability/ (opens in a new window.)

United States American Disabilities Act: Guidelines for writing about people with disabiities:
https://adata.org/factsheet/ADANN-writing (opens in a new window.)


Finally, Dementia Language Use guidelines from Austrailia: 
https://www.dementia.org.au/files/resources/dementia-language-guidelines.pdf (opens in a new window.)

What a Lot of Posts

What a lot of posts today! 

Sat down today to think about what I am up to lately:

ALZHEIMER'S: A Love Story, the documentary continues to travel and do well around the U.S.A. and around the world. 77+ film festival acceptances. 35+ awards.

I have begun writing the script for ALZHEIMER'S: The Musical.

I came up with a new concept for an opera using some of my poems called: ALZHEIMER'S: A Poetic Opera, How many poems in a dozen? Eight?

I am working on GYROSCOPE: An Alzheimer's Love Story, my memoirs.

I continue to BLOG here at "michael a. horvich writes."

The MORE THAN EVER EDUCATION FUND second annual luncheon is coming up on Wednesday, May 3. I have been attending meetings with the administrator of the fund, La Casa Norte as well as seeking raffle prizes, mailing out invitations, and regularly posting about the event on social media.

I have recently been invited to join and have accepted a position as Board Member on a fledgling opera group called The Floating Opera Theater.

I have been attending a new group in the area called "The New 100" which is a creative incubator which meets monthly with attendees sharing new works in the arts for the purpose of networking, workshopping, connecting, etc.

There is a possibility that Michael's Museum: A Curious Collection of Tiny Treasures, a permanent exhibit at Chicago Children's Museum since 2011, will add a number of collections to the already existing 105!

I do this every now and then to remind myself that I am still alive and not lazy even though it feels at times like I am "slowing down."