Any experience with obsessive walking and dementia?

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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??

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I can relate to what you are observing. My LO was diagnosed with Vascular Dementia at age 62, four years ago. (Now that she's in late stage, they suspect AD too, so Mixed.) Early on, she liked to walk, but, was hampered due to her poor balance and being prone to fall so much. After she went to the wheelchair, she seemed to wheel around using her feet to propel herself, sometimes hand use too, for hours. All day, she would scoot around in her wheelchair up and down the halls of the MC unit, into activity room, back to her room, etc. It looked exhausting. She has been on meds for anxiety since early on, but, it never seemed to affect that wheeling. She's worn out shoes doing it. I think it's kept her heart strong, but, her legs are very thin. She has gone on Hospice recently due to her progression, fever, infections, etc.

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.
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Londll Sep 10, 2018
Five days into meds an so far I don't see a change! If we had their energy it would be awesome wouldn't it!! 🤪🤪
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My mother is almost 83 years old and has been walking for years but especially in the past three years. She has moderate+ dementia and believes she is catching the train, plane, "someone" is coming to pick her up for work, a meeting, an exhibition. She has walked so much in the past three years that she has worn her knees out....The walking is comparable to her trying to catch her memory, always trying but having a hard time finding the starting gate.
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Reply to cobutts
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Londll Sep 10, 2018
I wish we could know what is in their minds that caused this! It must be torture for them!! I don't think anyone who has not experienced can understand how hard it is on our loved ones!! 💕
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You are much better off with a walker than a sitter. Sitters will eventually require 100% care for everything they need to be done. They don’t move. You don’t want to drug a walker, you want a little something for her to calm down on rainy days. I was told there is a cream that is rubbed on their arms. It calms them. Ask the Dr. There must be some drug in that cream that’s being absorbed. Use it sparingly.
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Londll Sep 10, 2018
So far the meds are making no difference. She still takes 100% care because we have to keep her from wandering off. She can get away so fast!! You can never let your guard down! I know the time will come when she won't be able to walk. The dementia marched on leaving them all behind. 😢😢
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Londll,
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.
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Londll Sep 10, 2018
http://www.addictionrecoverycenteroftemecula.com/browse-20741/Brain_Scan_Images.html

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!!!
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LondII, how about her sleep overnight? It seems nobody ever mention that important part.
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Londll Sep 8, 2018
She sleeps 14 hours a night. That's a lot huh?
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I agree with you Marsh Cal. I’m wondering if you noticed your brother burping before the trouble swallowing started. My husband has started doing it out loud in public after he eats. I discouraged it at first, but, like your brother, he couldn’t comprehend, and I also realized he may not be able to help it.
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.
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Londll Sep 7, 2018
Thank you for your help! We got her an ID bracelet from the sheriff's department. They lock it in so it cannot be removed. I also had tee shirt made with her name on the back. Now I wish I had put dementia patient under her name. Just sharing ideas. My sister was diagnosed in 2013. When we look back we see she had it many years! Who knew behavior was an indication of her journey. We made excuses for all odd behavior!! Change of life, depression etc. I imagine you can look back and see changes too.
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It is coming maybe just not for a good while yet. My father also walks a lot, he is more verbal than your sister but it usually makes little sense. I have noticed that he will walk a lot when his back hurts or he is constipated, it seems to hurt worse when he sits. I have gotten a prescription for pain relief from his doctor and if he even indicates that he hurts I will make him a hot chocolate with it dissolved in it. I also started making him a hot chocolate in the morning with miralax in it to prevent the constipation. Everything I have read about early onset dementia says that it progresses much faster than the elderly who get it, depending on their health
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Jasmina Sep 7, 2018
If he's not allergic to nuts, try some coconut in his coffee. A teaspoon. Don't put in cold drinks. Helps with constipation. Don't put in a smoothie either, it will become lumps. Or just cook your meal/veggies using it. Good luck.
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My mil is 88 and also a walker. She puts on her shoes at night and walks around her room right next to ours.
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.
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Londll Sep 7, 2018
I am so sorry!! I am there doing that but my sister can no longer speak. Just keep a smile on and do NOT worry about her boredom!! Life is not a game show and is not exciting everyday! As we know. Try not to be responsible for her entertainment. Maybe you should just respond to her by saying " I'm sorry you were bored."

I'm not an expert but I hope you get some ideas from all the caring people on this site!! 😘😘
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I agree with Susan needs help (love that name). My mom was a HUGE walker. Couldn't sit for more than 5 or 10 min. Would walk a mile to the grocery store and back (wouldn't go in, yes I would follow her in the car after she started getting worse). When she went to the facility because she couldn't be handled anymore at home, she continued pacing. All hours. get in bed for a while, get up and start pacing again. They also said let her do it. She fell several times fortunately no breaks until the last time. When she first went her roommate was 58. Had been there a year. Her husband and kids noticed something was wrong 5 years earlier. There are different Stages and it sounds like your sister is unfortunately in the latter stages. I'm so sorry. The good news.....she isn't aware of it. The bad news.....we have to watch a family member go through this. Good Luck and may God Bless.
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Londll Sep 7, 2018
We asked about the aniety meds and now we are trying Olanzapine for her. We are concerned because it says not for dementia patients. Neurologist says it's okay for her but we are only on second day. I will let you know if it works. Sooooo glad to know this behavior is common to FTD!! Thank you for sharing!!
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My mother also has dementia, age 93. She walks all day long especially on the days it is at it’s worse. She cannot sit longer than 5 min. We have a long hall, she is up and down it all day and in and out of the back door to patio comes back in after sitting for minutes.
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Reply to Bamagirl22
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Londll Sep 7, 2018
Yes all of our doors get opened and closed hundreds of times a day! It can be difficult to put up with some days!!! We have dog parks here and I wish they had a fenced area where I could take her to walk safely. Isn't this sooooo OCD like???
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