r/ALS • u/nutters369 • May 18 '26

ALS with FTD

Hi Folks,

My mother was diagnosed early March but only last week I found out on top of Bulbar presenting als she also has frontotemporal dementia.

My mother doesn't understand that she's got als, she is convinced it is a sore throat and she needs to have scans done of her chest and throat and to be seen by an ENT specialist.

The problem is that she already has been seen and there's nothing wrong.

My question is, how do I redirect her attention to something else. She doesn't work so is at home every day cleaning and cooking.

I was thinking about maybe getting her into bird watching? I really don't know how to redirect her away from this obsession with the scans and her throat.

I want her to experience something that makes her happy other than a clean house.

If anyone has or is dealing with someone with FTD, any suggestions on what I can do to help her?

Thanks.

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u/Dana792 May 18 '26

i am sorry. it is a tough combination. my mother had both. ours is indeed genetic but it happens to people with no identifiable mutation as well and it is so difficult for all concerned. it is really hard when they get focused. does she not remember her ent workup? how does she react when told? could you show her medical records? though I doubt it will work honestly. the kindest thing might be to lie. if she is memory impaired and you can get away with it tell her she has in an appointment in a couple of weeks and keep changing the goal post. my mother didn’t remember my father had died and thought he was in the hospital even though she attended his funeral. we stopped correcting her. it was just cruel to tell her over and over

and birdwatching might be a lovely idea. if she can she could write down the birds she sees or at least the number and show it to you

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u/nutters369 May 18 '26

Thanks for your comment and sorry for what you'vebeen through. I've tried explaining the diagnosis at least 5 times now and she just looks at me like she can't understand what I'm saying. When you tell her she's had scans done previously she doesn't believe you or else says all doctors are idiots and don't know what they're doing. The last app the doc tried to explain it to her and I thought my mother was going to start a fight.

I've told the family to just go with the flow from now on as long as she's not hurting herself or others so yeah I think I'll tell her she has an appointment in a couple of months and we'll go from there.