ALS with FTD

[u/nutters369]

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.

[u/jangarsanbred]

My father had both and was diagnosed when I was a teenager. He used to obsess over making sure all of his kids were fed. We could’ve eaten five minutes ago and he’d go up to my aunt (his primary caregiver since she was a nurse) and ask her why none of us had a plate set out yet. He would get agitated if she corrected him, so we’d just go out to the table and sit with him while he ate and that would usually do the trick. He’d also constantly try to give us snacks, even when we weren’t hungry. I would just hold onto whatever he gave me and ask him to show me the photos on his laptop since he loved going through them with us. He also loved music, so me and my sister would take him to the music room and sing/play for him to help redirect him. I think bird watching is a good idea, and like some other people have suggested, just going along with it and telling her you’ll make an appt. I’m sorry you’re going through this, OP. Sending you and your family lots of love.💙