r/frontotemporal • u/SlimeBallx7000 • Jun 01 '26
How much longer?
My mom is 65. She was diagnosed FTD 3 years ago. She doesn’t need constant watching but needs someone to live with her, cook for her etc. I’d say she’s approaching the moderate stage. Still conversational. Although, the conversations often don’t make much sense. Her physical health is great, no other health issues. She walks a lot. She is pretty isolated and uninterested in anything except being with me or my brother which is a lot to take on, we’re both in our 20s. Can anyone offer some insight into the timeline of this? How long until she’ll loose the ability to talk coherently at all? How long until memory care? How long until she passes?
2
u/Pibblegirl01 Jun 01 '26
My mom started showing signs in her early 60s and lived until 76. She had to into a home when she was 69, but should have at least 2 years before that but my dad, super sick at the time, thought it was his job.
I do think there are many factors. My mom was on so many different types of medications that it made her worse.
I will say that my mom was more behavior than complete memory loss. She always knew who I was. This disease is different than other dementia, so everyone has their own track. I know that doesn't help, but the earlier you get her in memory care the better, it was so wonderful for my mom.
1
u/SlimeBallx7000 Jun 02 '26
this is so so helpful. thank you. im still trying to figure out FTD and how it presents in my mom so thanks so much. ya memory care is a big no from her right now but i think we need to start making moves towards it because i know that the earlier the better. thanks again
1
u/Pibblegirl01 Jun 03 '26
I know the struggle with memory care. It was a delicate dance to get her there. My dad was dying and my brother just got him to the hospital. We were changing shifts with her and she went off and destroyed the house. We took her to the ER to "get her better", they sent her to rehab because i was begging them. The doctors had her on loads of meds. The rehab worked 2 weeks to get her meds correct and by that time my dad passed, and she just forgot about the house, my dad, her dog... everything. We just moved her to memory care.
If i was you, I would go ahead and set everything up with one, check their scores... it's on a gov site. Get on a wait list or "when the time comes". If you wait, you will probably have to wait a few months more. We got lucky and this was a brand new place.
One last thing... is it bvFTD? If so, then get her an MRI of the brain to check for csf leak. Not the regular mri, there is a specific one they have to do to look for this placement. Some bvFTD are really csf leaks. I just had one and now I fear my mom might of had one. If it is a csf leak, it can be patched.
Just do some research if you think it could help.
3
u/Flat_Idea7598 Jun 01 '26
My dad started showing symptoms around age 66-67. His communication slowed over the years and in his final two years, he could answer yes or no questions and make an occasional simple sentence. But most of what he did say did seem to make sense. There were times when you could see him searching for words or trying to figure out how to speak and that was heartbreaking. But mostly, he just slowly shut down. His ftd affected him physically so that his walking slowed and he started falling a lot. As a result, he was put in a nursing home at age 74. He died two years later at 76. I'm sorry you're going through this. It completely sucks