My mum has a companion carer who has commented that my mum has made some inappropriate comments that some make take as rude & offensive when they are out & about. How do we handle this going forward without belittling my mum or causing worse issues but explaining to others it’s the illness not her that’s making her behave in such a way.
If it happens pretty much all the time, I'm in the no-card camp and limit outings.
You can order plain business cards at Staples.com and say what ever you want on both sides. I think it's like $15 for 250 cards and they can be picked up at your local Staples later that same day.
In a memory care facility, which is where my husband is now, much outside-the-norm is tolerated, but the caregivers there don't have a problem, for instance, asking a resident to please stop shouting if they're disrupting the dining room. And they'll take them to their rooms for a while if they don't stop it. The resident is then warmly welcomed back to the group with an activity or snack.
One resident likes to clap and sing. One moans for no reason anyone can figure out. Another laughs about nothing. All this is considered "normal" for that place. The easy socialization and acceptance of the residents' behavior by caregivers and each other is another reason why a memory care facility for those with dementia is often much better than home.
Yesterday a local club sent a dance group to visit. A good time was had by all (awake) residents, most of whom for their own well-being should not be out in public anymore.
If your Mom is in public and she makes an entirely inappropriate comment, one that is truly awful such as "LOOK at the UGLY baby" then you say simply "Mom has frontotemporal dementia; she doesn't know what she's saying"-- because honestly, mom just violated a norm to the extent it must be honestly addressed whether it hurts/disturbs her of NOT. And if she is hurt by how it's addressed, then she MAY have SOME memory telling her to keep a bit of a lid on it out there.
If her comment is somewhat innocuous then most people will understand that, and just move on with their day. Our streets are pretty much full of innappropriate behavior nowadays. I wouldn't overthink it.
If there comes a point where mom is so inappropriate typically in the street that it is uncomfortable for all, then her days of going on outings where she is subjected to others may be over. A nice picnic in a deserted park may be what you're down to. Or no outings at all. Not everything has a good answer and not everything can be fixed or prepared for.
I was a caregiver to people withevery kind of dementia for a long time and to seniors who were just nasty, mean people. Your mother is very likely at a point where she can't be taken out in public anymore. Her homecare worker should not have to explain her behavior to strangers and strangers should not have to tolerate this in a store or restaurant or wherever they're going together.
If you think it's belittling to tell a senior that their behavior will not be tolerated because it's wrong and no one cares to hear their hurtful nonsense and opinions, you would be wrong. I've had senior care clients of mine with every kind of dementia start up with the comments and behaviors towards people whenn we were out and about in a public place. I never had a problem with telling a client no one wants to hear that nastiness and if they can't control themselves there would be no more restaurants or shopping.
I remember one client in particluar. She loved to go out to lunch and shop. So we did this activity twice a week. Mosty she'd point, make faces, or poke me if she saw an overweight or handicapped person. She'd do the same if she saw a mixed race couple. I'd tell her in my normal tone of voice (not a discreet whisper) that I don't care who's shopping or eating in the restaurant and that no one needs her to point out the obvious. That would embarass her sufficiently enough that she'd control her behavior or "showtime" while we were out. Then she'd be fine. Then one day this didn't work anymore. We were at our favorite restaurant we went all the time, and were asked to leave. She was really carrying on about a couple in there eating and the wife was quite big. That was the last time I took her out in public.
The social outings were then restricted to doctor's appointments, visiting family/friends, senior center, or the local adult day care center. It sounds like it's time for these to be your mother's days out now.
There are cards that can be purchased (Alzheimer's Association has some) or you can have cards printed if you think that would help.
Honestly If I heard people comment or wonder what was going on I would readily explain and everyone was understanding. To a child that asked their mom "why is that man so sad" I explained that he has a brain that was not working like hers or mine. And I asked if she had friends in her class that had Autism and when she said yes I explained that my husbands brain was kinda like that. She was perfectly happy with that.
I would announce if I had to take him into the women's washroom and I never had a problem.
Even with explanations, cards and understanding staff sometimes you have to quickly ask for a "to go" container and leave. So ask for the container when you order so it is handy.
And the most difficult...
Know when it is time to stop taking her out for her safety and yours.
When it is no longer safe to get her into the car
When her balance is such that she is ore of a fall risk
When it is more stressful to go out than stay home. (stressful for you and stressful for her)
I wouldn't even bother with the cards. The time comes when a person cannot be taken out in public anymore. That's when their outings get restricted to visiting family/friends, doctor's appointments, the senior center, and the adult daycare facility.
It doesn't do the person with dementia any favors being taken out in public and their behavior makes them a public spectacle.
My dad had bvFTD. I recommend two resources:
theaftd.org
ftdsupportforum.com
FTD is very different from Alzheimer’s as I am sure you know.
best wishes to you!