Any experience with obsessive walking and dementia?

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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??

Alzheimer's & Dementia Care Decisions

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So sorry for your situation. My brother has FTD and is 58. He walked for miles ever since taking the car away. He would walk to the store many times a day. He would not accept me taking him but would accept a ride home sometimes. Everything he did was compulsive and repetitive. He always remembered how to get home and always had something he had to do. He did know us but stopped responding to us. That was two years ago. He also would come out naked and walk around the yard or put on pants over pants. He went down hill fast, losing language, major confusion,cognitive decline, total incontinence. I have been caring for him the last 2 years and keep him in locked in the house. He can no longer communicate in any way or follow any commands or instructions. He also has rigidity and not good balance. He is on pureed diet now with swallowing problems and needs to be fed, dressed and bathed. This is a very difficult brain disease and nothing like my grandmother's Alzheimer. All brain diseases are very difficult but this one is especially hard hitting at a young age and most of the help does not fit and doctors do not have a lot of experience.

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You are the closest to being like us I have seen!! I sooooo agree with your statement! People doing the work are so helpful! It is not a fun road to travel at all!!!

Thank you for sharing!!

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My dad was in his early 60s when diagnosed with Alzheimer's. (We think he started showing signs at 58.) He was a compulsive walker for quite awhile. He walked the "circle" in my parent's house for hours daily. It drove my mom crazy for awhile, but after thinking about it, we decided that was much better than drugged and sleeping all day. She had her carpet replaced with wood flooring. We removed any rugs and trip hazards. We put ID related items on his tennis shoes in case he walked outside. We moved a TV so he could see it along his path and some days we turned on the country music he loved. And we let him walk. Some days we walked and talked with him. He also tried the door knobs, looked out the curtains, would walk and eat, etc. When he moved to the Alzheimer's unit, he walked there too. They did try many drugs with him and I kept a very close eye on what he was prescribed and how it affected him, sometimes having to insist they change or stop a drug. Looking back on it years later, as irritating as it can be for the caregivers, staying mobile was probably the best thing for my dad. He did fall trying to get out of bed, resulting in a hip replacement (Alzheimer's and hospital stays are a nightmare!) and rapidly declined after that. He never walked again. It's like he forgot he knew how to walk. It's certainly very discerning in the beginning (drove my mom crazy for about a year!), but I truly think the longer you can put off medication and just accept any non-destructive, unhealthy behaviors the better off they are. Just think how healthy we all would be if we walked that much daily! But do not neglect yourself and what you need as a caregiver to provide compassionate support.

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That is my thought exactly but we are being told we cannot let her walk outside alone even if we have her in visual so she will be safe. They worry about her stepping into traffic or getting lost.

I do understand your mom! I know exactly how crazy it can make you!! Thank you for sharing!!!

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Wow. She’s so young for that. I’m so sorry. Does she seem upset about something when she’s pacing? Maybe you should ask Hospice for anti-anxiety meds? Have you asked the Hospice Nurse why they feel she needs Hospice? People have been known to “graduate” from Hospice. In any case, be glad for the help and if you feel the need so you all can get a break, ask for more.

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Not anxiety and I did ask the nurse why. To be honest I think they see how upset I am at the thought of losing my sister and stop. I'm going to focus on being calmer when I ask.

Not anxiety with walking!! If she doesn't walk then MAJOR anxiety!! Rainy days are awful!!

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My husband has early dementia. He is 61 and was diagnosed about 6 years ago. He also walked like that. About a year ago it got worse, and he would walk the same path: outside, smoke, inside, bathroom, bedroom, change shirt, front room, back outside, and repeat. Over, and over, and over. I would just sit in the middle of the house and watch him, worrying about falls or wandering. He eventually had to be placed in skilled care for other behavioral problems, and got kicked out of one facility because they couldn’t handle the walking. Now he’s in a different facility, who handled it better. But he’s on hospice, is now wheelchair bound, and dying. Even in his very debilitated state, he still propels that wheelchair around!

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!

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I can see that and it helps to know the walking is expected. Thank you for taking the time to write. How did the walking stop? In a day or gradually? Could you help me with your experience?

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My sister also was diagnosed with Alzheimer's/Dementia and was living alone. We had to have her hospitalized and put in a nursing home. She lost her job of almost 20 yrs and wouldn't tell us why. We believe it had something to do with the symptoms. Not sure,. But since that, she has gone down hill. She was always a loner, so we tried not to bother her too much. But my brother who lived next door noticed she would go to the trash can outside about 20 times a day and look in it. Also, the same with the mailbox. She would never let anyone in her house. We found out she was defecating in the kitchen sink and anywhere she could. She wasn't using the bathroom. She house was in shambles, where she use to be a very clean person. She somehow let her car burn up and the fire department came. It was a real mess. We had to move everything out of her apartment and get rid of it. She is only 61 years old. But we do have some relief that she is safe now and taken care of. She also lost a whole lot of weight from not eating. So now we go and visit (which is close by) as often as possible. She doesn't seem to realize where she is, she just likes it and seems happy.

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Yes!!! If my sister did not have us it would be the same! Sad she doesn't even know us!! Thank you for sharing!! Do you think OCD is the result of the disease or part of the cause??

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yes, now I understand that this walking type of changing behavior is a sign of dementia, thats what my mom start doing three years ago, walking and walking, sometimes in the road with cars (two times policeman was bringing her back to the house) and yes, rainy days were a catastrophe because she was in much more anxiety, now she is walking in the rehab facility with the same stubbornness. In a hospital when she cant walk physically she does not understand that mentally and they had a hard time to stop her from walking...its so hard to see...

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It is!! We talked to Hospice an are trying a new medication for her. See above. I will post after a week to let you know if it helps. I can't believe so many people are out there with me!!! Thank you so much for sharing!!

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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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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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This is an anxiety thing. Ask the hospice nurse if she can get a med to calm her down. They had to do this with Mom.

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Okay we started. How long til they worked and how much did they help. What were your observations? Some walking or slumped in a chair? I'm not sure what to expect. I would love to hear your experience!!

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I remember a woman from my childhood who walked and walked for hours every day. She was only about 40, and I am fairly sure it wasn't dementia. She had a son at school with me. Looking back, my guess is that it was OCD or some similar mental issue. I just looked up OCD on the net and walking was one of the behaviours on the list. There seemed to be some useful resources, perhaps you could take a look.

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Thank you I will look!!

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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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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???

Any experience with obsessive walking and dementia?

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