coach wanted for dementia caregiver

September 3, 2024 4:33 PM

I'm looking for a dementia caregiving virtual coach for my mom. Currently she is the primary caregiver for my dad who has Alzheimer's. complications below

Dad is still in pretty good shape. Able to dress, get food, and attend to hygiene with some gentle coaching. They are living in the family home, first floor had room converted to bed/bath so everything is on one floor.
Sister is there a few days a week.
Complication is that mom has issues that I am having difficulty in describing in polite terms.
My sister's and my expertise in anything is dismissed by her, but she will listen to and quote random strangers. She has been unable to accept that dad has no short term memory and is no longer able to learn anything new. She is not gentle with her coaching or commands to him. He is able to read written signs and act on them.
Basically looking for an authoritative dementia care coach who can get on a few zooms with mom to be the 3rd party whose advice she may listen to and act upon.

posted by Sophont to Human Relations (5 answers total)

Best answer: Teepa Snow (who also has free, helpful videos)

Thing is it’s really hard to get your head around someone you’re used to seeing a certain way decline. Acceptance is going to be the trick of it. The authority there might have to be the doctor (multiple times if necessary).

For me it was easy to do this with my dad because he had presumed mental health issues for decades. My mom has very slight memory problems (following a heart attack) and it’s interesting, my response is different. I keep expecting her to be as sharp as she used to be, because she was SO damned competent. Despite myself (and everything I know from taking care of my dad for years now!), I feel irritated sometimes because I’m seeing her behaviour as intentional (because I’m struggling to accept the changes). I have to keep telling myself to be nice and patient with her.

Maybe the dynamic between your parents has been one way and your mom can’t handle it changing.

Also want to share this from a well-known infographic (has been helpful for me in a pinch, when slogans are most useful):

1. Agree, never argue
2. Divert, never reason
3. Distract, never shame
4. Reassure, never lecture
5. Reminisce, never say “remember”
6. Repeat, never say “I told you”
7. Do what they can do, never say “you can’t”
8. Ask, never demand
9. Encourage, never condescend
10. Reinforce, never force

https://www.reddit.com/r/coolguides/comments/et7ave/talking_to_a_person_with_dementia/ (In case you want to access the image to print)
posted by cotton dress sock at 5:07 PM on September 3 [17 favorites]

My stepdad's doctor arranged for an occupational therapist to work with both him (who had been diagnosed) and my mom to essentially do a reset of the house and their daily routines to ensure he'd be safe and to help my mother understand how to adapt to this big change. I believe it was covered by Medicare and/or their long term care insurance. Worth asking if your dad's doctor can authorize that, if they haven't already.

My mother went for a brief time to a support group organized by the local chapter of the Alzheimer's Association following my stepdad's official diagnosis last winter. She didn't like the group dynamic but found the information provided by the Association very helpful, particularly during the last very difficult week of his life. It can be a great resource, if she's open to it.

Also, while he was still physically able my stepdad went to a day program a few days a week for men who had been diagnosed - not sure if Mom found that through Alz.org or through his doctor - but he really seemed to enjoy the camaraderie and it gave my mom some much needed respite.

This is so hard for everyone. Sending warm thoughts to your whole family.
posted by Sweetie Darling at 5:31 PM on September 3 [2 favorites]

I follow this Instagram account. Their videos cover a lot of challenges that come with later stages but their techniques are relevant to early stages as well.
You can sign up for video coaching sessions and they have a few other resources as well.
Teepa Snow is the "authority" I know of as well, but being an authority makes it less likely you or your mom can get some one-on-one support. But she has great videos thar may be enough of an introduction.
posted by missriss89 at 6:40 PM on September 3

Another vote for Creative Connections. Their videos are great and I wish I'd had them for when my dad was in his earlier stages because I know they would have helped a lot.

One thing I liked to keep in mind while working with my dad in his mid-stages of dementia is that it was kind of similar to reasoning with a toddler and so it needed similar strategies - which is not meant to mean. The list cotton dress sock provided is excellent.

Good luck to both of you. This is so hard to live through and you have my sympathies. ♥
posted by urbanlenny at 11:32 AM on September 4

Seconding Teepa Snow.
posted by branca at 4:52 AM on September 6