My sister has early onset dementia. She walks all day long. We watch her constantly as she sometimes wanders. She can only say "yep."
She is helpless and would walk naked if I did not dress her. She is incontinent but not full fecally yet.
She is under hospice care but home and still walking. What do they see I don't? I feel like she is not ready for that yet?
She can't eat or drink without prompting. She doesn't know us any more. She is only 65.
Everyone else I read about is old and not physically strong. Anyone else dealing with FTD???
Is this really the end??
25 Answers
Helpful Newest
First Oldest
First
Have you discussed the prognosis of FTD with her doctors or the Hospice team?
I'd be interested to see how the medications work. I've been told that many of the medications that are meant to help with behavior, agitation, anxiety, etc. is prescribed off label. My LO has done well with them, but, they don't seem to have affected the wheeling or patting.
ADVERTISEMENT
I think the OCD was brought on by the Dementia/Alzheimers that my sister has. Unfortunately she was on illegal drugs most of her life and I think that may have caused the disease. They do have her of Aricept, a dementia drug to help keep her more normal instead of talking off the wall. I thank God that she is finally be taken care of by people who know what to do. I wish you the best of luck with your sister.
How sad!!! The same parts of the brain are affected with drugs or alcohol as this disease!!! More attention needs to be paid to this!!!
He too has FTD, an yes, it is very different from Alzheimer’s in addition to being a rare diagnosis overall. To answer the original question, my husband was diagnosed four years ago, when he was 64 (on the older end of FTD diagnoses we were told) and is still in good shape physically. About nine months ago he started pacing indoors from room to room, back and forth, and he’s extended that to going in and out to the front porch. He will also walk occasionally but not very far and has always come back. A friend bought him an ID bracelet that he refuses to wear; luckily we live in a small rural area and everybody knows he belongs to me. I am constantly grateful for the little things.
If she is not doing something right now, it hasn't happened. We spent 7 hours making salsa and an hour later she stated the day was boring...I was sitting watching TV because I was tired!
She doesn't nap and unfortunately all the things she had liked to do she can't any longer-puzzles, reading, word games, watching news. It's all to confusing now and she still wants to do something so it all tests on me to come up with something. I use trivia books from Eldersong that help sometimes. We try to have at least one activity a day but it's not enough for her.
WhenI I pick her up at adult daycare, she always tell me it is boring there too. I'm pretty sure she won't be happy anywhere.
I'm not an expert but I hope you get some ideas from all the caring people on this site!! 😘😘
But if your sister cannot dress herself and can't eat or drink without prompting - it sounds more advanced than 'early onset' to me.
You need to be talking with her primary physician to ask about early onset vs full-blown dementia and what you can do about it. Also ask why she is on HomeHospice. Her primary physician and even the HomeHospice can give you more answers than we can.
washingtonpost.com/outlook/2018/08/10/8baff64a-9a63-11e8-8d5e-c6c594024954_story.html?utm_term=.7249d450fc58
I do understand your mom! I know exactly how crazy it can make you!! Thank you for sharing!!!
The symptoms of dementia can really vary, and walking isn’t uncommon in young people. It’s so hard because they are physically strong and you can’t stop them, even though you’re trying to keep them safe. I do not think it was an anxiety issue for my husband, it was just something he knew how to do, and so he did it. He walked like that until one day he just suddenly couldn’t. It’s a phase your sister is going through, and it won’t last forever. Just know you’re not alone!
Prescription drugs are Never the answer. They only create more problems.
Also fidget cubes are good for keeping minds busy. My Mom loved hers.
webmd.com/vitamins/ai/ingredientmono-953/ashwagandha
Thank you for sharing!!
Hospice does have volunteers that will come and visit the patient. I am sure they would love to go for a walk with your sister, as long as there is a safe place to do so.
I think the longer your sister is active the better off she will be.
My Husband was on Hospice for 3 years, diagnosis was Alzheimer's (I also think he had Vascular Dementia) but I was able to keep him at home greatly due to the fantastic help I got from Hospice, the CNA as well as the Nurse and all the equipment and supplies.
Would your sister do well on a bike? Just wondering if she can do a bike a stationary one you can set it by the TV and she can watch TV or some of the bikes have a Map program so it looks like you are riding in the country or along a beach. Treadmills also have this but not sure about getting on and off a treadmill and if her balance begins to go it could be more dangerous.
We give her Cheerios to line up and try to distract her but if she isn't walking she is miserable! Just wondering if anyone else has that problem. I hear it is common with early onset dementia.
Not anxiety with walking!! If she doesn't walk then MAJOR anxiety!! Rainy days are awful!!