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Chatykat582 Asked September 2012

Is it typical for a dementia patient to walk and walk and not settle down?

My mom was moved to memory care 2 months ago after suffering from her first UTI, at which point her ability to form any words at all is gone completely and she cannot carry on any kind of conversation. When I first arrive at her facility, she'll allow us to sit for several minutes, she'll try and tell me "things" in jibberish which I cannot understand. Then she insists on walking me around her facility, in circles for the rest of the time I'm there. I feel like I'm a little puppy dog, following after her owner. I realize every dementia patients shows different symptoms, but is this one of them. If so, how do I deal with it? It just seems crazy to me. Oh and btw, she refuses to leave the building at all. It'd be nice if I could get her out for a drive. But she won't hear of it.

Chiiron May 2017
I have a man in my facility who has been doing this intermittently for a few weeks. In the last few days it is constant - yesterday 16 hours of pacing. He does still sit to eat. I have an appointment for him this week. I will talk to the doctor about the Depakote and Remeron. He is very thin, and all this walking is not good for him. Thanks for all the experiences you have related. I've taken a lot of dementia training and not once was compulsive walking mentioned!!

Samantha1994 Mar 2017
I attended a dementia course with work on Tuesday and they said that repetitive motion is common and could be a sign of feeling like they need to do something or that they're not feeling secure in themselves. Could be an underlying emotional issue?

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Sunflo Mar 2017
My mom does this, mostly all night. She checks every door, every window, her purse, her papers and checkbook - literally all night long. Then she sleeps most of day. Don't worry as long as they are safe and it helps calm them.

Joanna7 Mar 2017
I am pacing around my home all of the time. It's hard for me to NOT pace. I am 64. I thought that it is an extreme nervous habit. It has gotten worse as I have gotten older. I will not put any chemicals in my body if I can help it. So please don't suggest pills. Two months ago, I was given a "joint" from a friend to see if it would help. So I tried it that evening hoping I would calm down long enough to watch a movie. IT WORKED! Maybe it would work for dementia patients.

Lawgirl Mar 2017
Stressed Mom, it means nursing home.

Lawgirl Mar 2017
Stressed Mom - It means Nursing home.

JessieBelle Oct 2016
Anthony, we had a member here who has moved on now. Her mother used to pace the house anytime she was awake. It continued until almost the end of her life. I don't know if there is anything doctors can do to help with the pacing. Some people with Alzheimer's do that. To me it would be very distressing, so my heart is with you and your wife. I would be torn whether to sedate my spouse or to let her pace. I wish there was something that would calm her without sedating too much.

As unsettling as it is for both of you, it would be good if you could find a way to take some time for yourself. Two hours isn't enough to refresh yourself. You need more respite time than that. Your wife is important, but you are equally important. I don't know what you like to do, but you should take that time for you. I have to have at least 4 hours twice a week to keep my mind healthy. I'm lucky that I can leave my mother for a while. I hope that you can find care for your wife so you can take some needed breaks.

Anthony1 Oct 2016
I still have my wife with me at home,she is 58 and was diagnosed with dementia 5 years ago.She has all but lost the ability to speak and finds it very difficult to communicate with anyone.She walks around the house and garden if the weather permits all day stopping only when I can get her to eat then she is up and away again sometimes she eats on the go as well.I have been with her 24/7 since She was diagnosed and as her condition progresses it is beginning to wear me down.I have a care worker who comes to the house for 2 hours a week and she doesn't like me leaving her,the worker says she is fine when I'm away but when she leaves I can't get my wife settled till she goes to bed that night.I also can't settle when I'm away from her,Does it get any easier to leave her?

Kikkie Oct 2016
I work with dementia resisents and although people say its sundowning , i think it is important not to label anyone. Everyone is different. She might be new to a facility and therefore restless. It is important to realise that at the end of the day we all tend to want to return home, just like birds going to our nests and she is doing that. Looking where she belongs or should go for the night. Sometimes we should ask our selfves if the five core needs all humans have are met. They are to love and being loved. Haveing the right to choose. Being able to care for others. To have your self esteem boosted. Have meaningful activities . If my residents are restless , i let them be, as long as there is not a high risk of falling, which may make the situation unsafe and may require more close supervision. Also maybe than just saying you want to take her out ask her to go to something that she always liked such as a hobby or activity, like shopping, a picnic or a ice cream. It could also be helpful if you can convince her that you are so very very busy and you never know how you are going to manage alone by baking this big cake and if she thinks she can maybe help you out of your pickle your in.... You get the drift

hildygard May 2016
my daughter is an alcoholic. her behavior is irrational. she lies constantly and in thinking back - it appears this started many years ago. she is promiscuous and was arrested for pan handling in the mall. finally a judge saw that her behavior needed more than jail and she is now in a facility. in reading all the comments above it appears all situations occur with older people. has anyone experienced my situation?

Kakkipop102 Apr 2016
My husband refuses to walk, and I live to get out and walk. My problem is he will not let me go anywhere without him! We moved here to be close to my son, but that doesn't help with the days. All he wants to do is lay in bed....thank goodness I don't have to do that. I would never take the chance oh going outside our yard with him asleep....if he woke up and couldn't find me it would be so bad on him! Does anyone else have a problem like this? I do not know anybody where I live now because he won't go anywhere.

Reverseroles Jul 2015
Yes ask the doctor for depakote sprinkles, it will calm her right down. Lots of sleepiness at first but it settles after a few weeks and they are like a new person. There is no black label on this drug, its also used for people and teens for seizures and adhd. It enabled me to keep my Mom at home with me. She was on it a couple of years and is now off. Good luck, do it asap for your Dads (?) sake!! They dont want to be like that either and are happpier ON medication than OFF of it,

Anonymous1 Jul 2015
Remerol

spktruth200 Jul 2015
need a recommendation for a sleep medication so the husband can at least get some rest at night.

spktruth200 Jul 2015
My patient of 2 wks just got out of nursing home with UTI, went to a NH and came home. She is wandering around unable to sit still for 5 minutes. Her 92yr old husband is at his whits end. Yesterday she fell twice and took her back to the hospital. They discharged her today and wanted to send her back to the NH but demanded $2500...for one week, which they didn't have. So he brought her home. The Hospital told him that IF she fell again, she wouldn't be coming home again. I think that was a threat! There is only one hospital near us, so of course she will probably fall again...the dear old man is beside himself. I am very familiar with alzheimers, and have tried every trick I know...but to no avail. I was with her for two hours and am exhausted. Don't know how the husband is able to do this. Is there any medication she can take at night to make her sleep. She is having trouble walking and we are terrified she is going to fall again...any suggestions.

terryjack1 Jan 2015
You can contact your local chapter of the Alzheimer's Association for info on dementia behaviors and how to deal with them. I often see people with dementia wandering some only at certain times, some all day. She may know what she wants to tell you but the dementia won't allow her access to the right words. Sometimes, you can kind of get the idea about what they are talking about, but most of the time it is difficult. If she is up wandering, then she is probably not drinking enough--hence the UTI. This does not bode well for the facility she is in. Making sure she is offered something to drink (and drinks it) every hour will ensure she is getting enough fluids. People who wander can also lose weight, that's why having snacks (and foods) that are finger foods and easier to eat should be available. I don't like the overuse of medication, but if your mom becomes extremely agitated then her physician may want to look at that, reassess her and give her something mild. If she is agitated then she can't really enjoy anything which decreased the quality of life she has. I know dementia is difficult, my grandma had dementia. I've been there as many others. Ask questions, make a list for the doctor so you don't forget anything, if you have other questions you can contact your local long term care ombudsman. You can contact the Area Agency on Aging or Bureau of Senior Services for info, if they don't sponsor the program they would have the contact information. The ombudsman is an advocate and has lots of info on assisted living and nursing homes.

maui34 Jan 2015
I call my mom an Energizer Bunny as well. Or, The Little Engine That Could, is another great nickname for her. 12 years in, due to the constant walking, and unsteadiness, she falls. Three really bad falls this year. (Lots of UTI's too.) But it's let her walk with the potential risk of falling or restrain her and that is the worst punishment ever - they restrain her in the hospital - watching her in restraints is my emotional punishment. God how it tortures me to watch her like that. Anyway, at least with walking she has months in between falls, in between a few days of restraint. Her end is near and it will undoubtedly be from a fall. I've tried to get her sedated but they say it's inhumane (five different doctors now). Watching her frantically pace and frantically yell and rock, that's inhumane to me. She is soooo agitated ALL the time (two years now). We've run every test in the book to see if there's something else going on but nothing. She's on both Seroquel and Depakote and round the clock tylenol - but nope, she just keeps going. Sad, sad, sad. She definitely doesn't sleep. Hospice workers help and NH is amazing and staff is very patient. I can't imagine life without them. There is NO way I can handle her by myself. Her husband died two years ago. This is her third NH, and all were good, but this one is AWESOME! Small and personalized and so understanding. I pray for the day that she is released from the prison of her incapacitated brain and body. I will miss her dearly but this is no life for anyone.

msdaizy Jan 2014
I called my mom the energizer bunny. She would get up every hour. I was running up and down stairs all night long. The serotonin levels in her brain is all screwy. When I was at my wits end with mom they gave her lorazepam to help her relax. But sometimes those wouldn't work ...this will go on in the latter stages of the disease. I hope for better days for you. God Bless

msdaizy Jan 2014
Nh stands for Nursing Home.

littlemama Jan 2014
Try to keep them for getting a UTI if at all possible because they will get so confused.
And if they are not use to taking a lot of meds...oh boy! It gets worse. Sun downers, of my God ! What a night mare. I almost went crazy, I saw all kinds of personalities come out of my mom. After she passed that stage it calmed down some. As for a NH I don't ever want to take her back to that again if I can help it, not being checked on but every 2 hours from a RN and suppose to checked on by an aide in between, hell a person can be dead by then. These NH has strange policies and I don't particular care for. My mom is at home right now ... with me!

littlemama Jan 2014
@ Stressedmom..NH means Nursing Home.

Claire33 Dec 2013
My mother did the same thing. Her dementia & behavioral problems also began with UTI's. Look first to the meds being administered. Many of them can cause this type of behavior. So many of the meds have side effects that include agitation, sleeplessness, hallucinations, etc. Mom had adverse reactions to virtually everything the doctors tried on her. It was a nightmare. Some meds given at night might cause fewer problems if given during the day I found, so you might look at that. My heart goes out to all of you.

Summer1900 Dec 2013
NH.......NURSING HOME
AL.......ASSISTED LIVING
ALF.....ASSISTED LIVING FACILITY

Jaye Dec 2013
My Mom walks when she is anxious!!! Maybe something to help her relax a bit!!! I am not encouraging anyone to over medicate someone but being anxious is not good either!!

Worry4AD Dec 2013
My Mom has dementia. She constantly walks and we have stairs. We have been watching her closely but she recently fell down the stairs and had stitches in her lip and lost a tooth. She was unconscious for a few minutes after the fall. The CT Scan showed no broken bones and she was released from the hospital. Since released and home, she has slept a lot!! All day long! Maybe woke up for about 30 min. She tries to walk but can't hold herself up now. I'm scared! What can be going on now.? She has a follow up appointment tomorrow. We are searching for healthcare services for her. We have to safe proof the house or send her somewhere safe! Any helpful suggestions or thoughts please?

Worry4AD Dec 2013
My Mom has dementia. She constantly walks and we have stairs. We have been watching her closely but she recently fell down the stairs and had stitches in her lip and lost a tooth. She was unconscious for a few minutes after the fall. The CT Scan showed no broken bones and she was released from the hospital. Since released and home, she has slept a lot!! All day long! Maybe woke up for about 30 min. She tries to walk but can't hold herself up now. I'm scared! What can be going on now.? She has a follow up appointment tomorrow. We are searching for healthcare services for her. We have to safe proof the house or send her somewhere safe! Any helpful suggestions or thoughts please?

Anonymous1 Sep 2012
My dad did it and became very very anxious and would not sit still. They upped her antidrepressant and put her on a drug called remeron to get rid of the anxiety. Worked wonders. Now he sleeps at night soundly and doesn't do all that walking aimlessly. Ask your physician for help. These drugs do NOT DRUG, they just help them feel calmer and safer and they are able to get the rest they need.

Chatykat582 Sep 2012
@deardu....my mom has had edema as well, and now that you mention it, I have noticed that her ankles are not swollen anymore, I didn't think to attribute it to the walking! Thank you for pointing that out!

Chatykat582 Sep 2012
Oh yes, the UTI was solved as soon as we noticed something was up with my mom and she said she wasn't feeling well.

hessaw Sep 2012
I think the physical activity reduces tension. Walking it off is also common in hyper children. But that UTI connection is scary! Is it solved?

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