So my Mom was diagnosed with FTD today...

Started by

I think I'm writing this mostly to get it out. Today, after 5 years of not knowing what the h*ll was wrong, my mother (51) got diagnosed with FTD. I'm 23 and though I've suspected it, it still hit me hard.

I'm working on getting her into an assisted living program, I think it would be a good thing for her in the long run. All she really does right now is compulsively clean and watch tv. I have a job, so I can't take her out to do a lot of things, so I'm hoping an assisted living place will do activities with her and do field trips.

I've been reading the end stages of FDT and they sound a lot like my grandmother who was diagnosed with Alzheimers and ALS in the 90's. I'm starting to wonder if the ALS got misdiagnosed. The neurologist we're seeing now wants me to get genetic testing to see if I carry any off the markers for dementia. My grandmother got alzheimer's in her 60's and my mother's symptoms started at the end of her 40's. So it does worry me.

I don't know. I don't even know what to feel. I'm confused and slightly numb right now. She's just happy to know, Not upset at all. The doctor says she also has a pseudobulbar affect happening. She didn't get the least bit upset.

sorry for my rambling. I think I just needed to write this out and hear from other people who may understand.


I am so sorry. Such a young woman to have such a disheartening diagnosis. A day at a time . . .
asoren, you sound remarkably mature for 23 years old. It sounds like you realize what your mother needs and are helping her. It doesn't sound like you need any advice. Maybe just a hug and a pat on the back... and a wish that you don't have any genetic markers for dementia. But even if you do, there might be a cure by the time it would be a worry to you. We can always hope it will be soon.

FTD is a difficult disease in many cases and can be very hard on the family. My good thoughts are with you as you go through this with your mother. I hope that it progresses slowly so that you will have more time together.
You are doing the right thing for you and your mom. Assited living can be very good for many people. She will get the care she needs, be around people and can take part in activities. You are both so young to have this come up. This is a great site for support. Stay in touch and let us know how things are going.
Asoren, I am so very sorry, FTD is a very difficult diagnosis, but knowing what you are dealing with is very important. Testing you is a great idea - remember knowledge is power and there are many lifestyle changes and medical care that you can do to combat any issues that you may have.
Putting your Mother in Assisted Living is a wonderful idea and doing it now while she can enjoy the social aspect is a great idea, will take a great burden off of you and let you spend quality time with your Mom . I would think about an assisted living facility that would transition to full nursing care, FTD can progress rapidly or slowly and be very trying for the patient as well as the family - so being able to keep her at a more familiar place when she does need the full care would really be easier on her and on you.
God Bless you on this journey with your Mother, it will be challenging, so stay strong, concentrate on making it as rewarding as possible - my prayers will be with you and your Mom.

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support