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Yesterday or day before she made many many trips from her chair in the living room, down the hall toward the bathroom, u-turned and came back. She would sit for a minute or two and start over again. This went on for almost a hour. Today she was going from her chair to her rollator, about four feet away, back to her chair, back to the rollator. She sat in each about 5 seconds. This went on for about a half hour.


Just wondering what might be going on and how I might be able to help her.


Thanks to all! You’re a great group! God Bless!

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You are interpreting her behavior as “restlessness”, but it may just as likely be soothing, repetitive movement from her perspective.

She isn’t thinking with the same equipment that you think with, so she isn’t necessarily interpreting her movement as anything at all.


If she doesn’t seem bothered or distressed she may be enjoying what she’s doing. You can spend the moments when she’s moving this way doing a few short term tasks or doing nothing.

You will know when she needs help. For this activity, probably no help needed.
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hallah Jul 2021
Thanks, AnnReid. You made me laugh and realize I must be over-obsessing with the situation. Now I’ll go straighten up the house. Thanks again. I needed that!
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You are not over obsessing. I would say if she continues doing this I would talk to her Dr. It could be anxiety and may need to medicate for it. Moms was humming that got louder as the days went by. She needed medication.
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hallah Jul 2021
Thanks, Joann. I have asked her why she was so restless. She tells me “I don’t know. I think it’s because.......uh....because......”. That’s as far as she can go with that thought. I don’t push her on it; just move on to a different conversation. And wonder what’s going on. If it continues I will call her doctor.
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Good for her to actually get some exercise. More of us should do that!
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hallah Jul 2021
She’s definitely getting exercise! And I’m getting tired out watching.
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UTI
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hallah Jul 2021
UTI was something I first thought of. DW isn’t experiencing any of the symptoms of a UTI. She says there’s no pain when urinating, not going too frequently, no cloudy urine. She drinks around 10 glasses of water, 12 ounces each, every day. I tease her and call her “Sponge”.
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Maybe it was something simple like stretching her legs and getting some exercise.   Maybe she wanted to do or get something, but forgot.  That happens to me a lot, and I don't have dementia (or least I don't think I do!)

And actually the exercise is good for her if it's done safely.

You seem like a very caring husband.  You might want to consider contacting the local Alzheimer's Assn. and ask if they're running their Creating Confident Caregiver course.   They were free when I took one, and it was very, very  helpful, even though dementia wasn't in the picture for the parent for whom I was caring at that time.
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hallah Jul 2021
Usually if she’s going to go get something and forgets, she’ll tell me she forgot what it was.

I, too, have my forgetful moments. I blame it on door-ways. Door-ways cause forgetfulness. Lol

Thanks for mentioning Alz’s courses. I took a quick look and will be delving into some of them. I didn’t see the one you spoke of but there are several which are probably similar and will be helpful to me.
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Maybe your wife is bored. People with dementia get incredibly bored but don't understand that they are and can't verbalize it. What does she do for activity during the day?
Does she ever go out, even just outside? Do you ever have visitors?
I've had elderly clients who did nothing but sit, watch tv, eat, day after day. They would often get very restless because they'd get a burst of energy and have nothing to do. Sometimes just going outside for a walk around the yard makes all the difference. Can your wife be taken outside? Or maybe for a drive? Just getting outdoors for a little while helps.
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hallah Jul 2021
You may have “hit the nail on the head”. I am lax in getting her out and about except for doctor appointments, which there are quite a few of them.

Her daily activities? Watching tv. Visitors? They fell by the wayside when they found it difficult for them to carry on a conversation with her.

Because of what you said I will make more of an effort to get her outside. Y’all are my witnesses to that, ok?
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Hallah,

You have received great answers, so I won’t repeat their answers. I just want to say that you are a sweetheart. You are a loving and caring husband. God bless you.
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hallah Jul 2021
Thank you! I keep asking God to take care of me so I can help Him take care of my wife. It’s been working so far!

My wife would do the same for me if our roles were reversed.
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Thats call anxiety. My husband is suffering the same. And tend to forgets what is he was looking for. Call her doctor to see her and talk about her behavior. Also depression could be hand in hand with anxiety. So sorry for this. It's a rough path 😔,
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Edibles! Really try her on CBD gummies. If you are in a nonTHc state, the nonTHC HoneyB healthy living brand of gummies are available on line & up in some nutrition oriented shops.

If your in a THc ok state, there is a different Honeybee, honeybee-edibles who also does chocolates & has an actual chocolatier, Dave Owens, who has created recipes for their bars and drops. They are part of the Proper group. Another if you r in okTHC state, is Wyldcanna’s gummies, their Marionberry I’ve heard is full fruit flavor. For non gummies, there’s Ripple Balanced 5 from Stillwater, it’s a shake that dissolves in hot drinks.

All seem to be quite good at making you more chill, less anxiety.
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BurntCaregiver Jul 2021
igloo572,

Every problem doesn't have a chemical solution. The wife has dementia. Weed and weed products can make it worse.
People need activity and stimulation. When they don't have any they decline very fast.
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Doorways! Hahaha!

I love that!

Now, I know what to blame!

Thanks for the chuckle!
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disgustedtoo Jul 2021
I posted a link to a real study done on this - it DOES indeed happen! I noted it LONG before finding the article, esp when you get to "destination", stand there perplexed as to what you were going to do, then as you recross the threshold, the thought reappears!

https://www.livescience.com/17132-forget-walked-room-doorways-blame-study-finds.html
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I posted yesterday I would make more effort getting my wife to be more active. Today we went to her doctor appointment. Quite a bit of walking for her. After getting home she started getting antsy again. I suggested we walk out back and sit on the swing. That was a good time for both of us! Now it seems she’s settled down.

If I notice my wife getting restless the next few days I’ll make a doctor appt.
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LittleOrchid Jul 2021
I don't know much about Alzheimers as it doesn't run in my family. However, I do know that getting outside for a bit and taking a walk always cheers me and gives me a certain peace and repose that nothing in the house can do. I do love my gardens, but I think most people would feel better if they cultivated a habit of a morning and/or afternoon walk of about 15 minutes each day. Your idea of sitting on the swing was an excellent one. I have a bench outside with great views of the gardens. I should use it more than I do.

Perhaps the best thing about "outdoor therapy" is that it is instinctive, needs no verbal communication. All of us, as we age, miss the things we used to be able to do. I am not sure, but I think part of the Alzheimers is that the person loses the ability to rationalize that we cannot play tennis, but we can enjoy the memories. Getting your wife outside can help her experience another reality without needing to verbalize or connect her thoughts. Good for you.
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At least she's staying inside the house. Don't stress over things that don't harm her or create a danger for the household. Maybe she needed some exercise!
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hallah Jul 2021
I do appreciate the fact that she stays inside, not wandering out. She’s safe in the house, using her rollator walking around.
She says she doesn’t know why she gets so restless. She has a problem and I want to “fix” it. In this case there may not be a “fix”.
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If you haven't already heard of this book, "The 36 hour Day" it is a must read. I am dealing with my mother's dementia and it has been very helpful.
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hallah Jul 2021
Thanks Linda165. I’ll have to get a copy of it.
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My mother did that a few years ago, then stopped and has recently started doing it again. Her route is bedroom to bathroom and back over and over. How long she does it varies. This is a pick your battle moment. Her doctors words to me when it happened first time.
If they aren't bothering anyone, not in danger of hurting themselves and seemingly ok with it. Let em go. For my mom it's getting her some exercise and she not sleeping all day. My problem with it r my issues. Took a long time for me to realize that but shes not hurting anything... so I let her go and hopefully it will go away on its own again.
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Hey hallah,

Mom began doing the "antsy pants" about 3 years ago.. I would take her for walks, hours long drives and sit on the porch. Nothing worked. I had her checked for a UTI and that wasn't the issue.

It was the progression of her dementia. Soon after the walking, it turned into wandering. I had to put alarms and locks on the doors because she would just take off with no particular place in mind.

Someone, on another thread, had mentioned playing a loved ones favorite music. I wish I would have read this a long time ago but maybe I was meant to simply share this here and now. Playing the music is thought to sooth and comfort the incessant anxiety in individuals.

Quick prayer said for you and your family and friends....
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NeedHelpWithMom Jul 2021
Barb,

I live in New Orleans. We are known for our extremely talented musicians. Many musicians here have joined together, volunteered by visiting people in hospitals and hospice houses. Many patients have sited their pain and anxiety were drastically reduced, due to hearing music.

So, I feel that your comment about music is dead on! Music is not only soothing and enjoyable, it can be a form of therapy. It truly does feed our soul. It successfully works on our emotional and physical responses. I know whenever I was troubled as a young person, I immediately listened to my favorite music and it transported me to a better place.

I had the same experience with poetry. I used to ride my bicycle to the library and read poetry. I will always love music, poetry and all forms of art. I took art in school and continued taking classes even after graduating. I hate that some schools have cut the budget for art and music. We are fortunate here in New Orleans to have NOCCA, (New Orleans Center for Creative Arts) which is a phenomenal school for talented youth. I am so proud of the graduates from this school and it’s wonderful to see them thrive in careers that they love. Several have won Grammy awards.
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Check your area’s Alzheimer’s Assoc. they may have “Day Care” for our special seniors. It may be held in local Churches. Our area has some. Maybe 10 to 2. Lunch provided. We found out about this great opportunity at our support group. Members of our support group report that their LO enjoy the conversation and stimulation of interacting with others. The good lunch made a big impression. Check with the local Alz Assoc to see if there is something like this in your area.
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FarFarAway Jul 2021
That is wonderful that they do that. Great advice. I think that a lot of the time the symptoms are brought on by being stir crazy
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Please also note that an underlying issue can result in restlessness. A UTI, area of skin breakdown, itchy clothing etc. Something serious or seemingly minor can cause restlessness .
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You made a helpful observation yourself when you said "sometimes there may not be a fix." Sad, but true and esp tough when your instonct is to " fix the problem. ". Good advice from those who say not to stress too much if her behavior is not putting herself or anyone else in danger.
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When I took my Husband to Day Care there was a woman that walked the hall. Back and forth, back and forth, all day long. When I would pick him up between 4 and 5 she was still walking the hall. (wonder how many "steps" she got in in a day!)
It seems to me from conversations and observation that some get "fixated" on something. It would be pacing or walking, folding paper, tearing paper, chewing on something, water, any number of things.
If everything checks out medically or physically , no UTI, no rashes, no pinched skin...then that is just her "quirk".
There might no be anything you can do, she might not even know what she wants or needs.
The best thing to do for her is to make sure she is safe when she walks or paces. Make sure there are no cords on the floor, no throw rugs or mats she can trip on, no wet spots. And make sure the doors are secure so she can not wander out of the house.
That brings me to another point. She may begin to wander out watch for that and make sure that she can not get out. I would also notify your 911 service (police and rescue) that there is a person living at your address with dementia. You can do this by calling the non emergency number or stop in at the police department and talk to them, same with fire department. You could even ask about an emergency lockbox in case they ever need to get in and you can not get to the door. It will also ensure that they will act promptly if you report her missing. You could even ask if you village, town, city has a program that will help locate vulnerable people. (mine had Care Track and was available to people that might wander but they had to have had 24 hour supervision. (This would not have been for someone that lived alone.)
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i would have her checked for a UTI...other than that it might be one of the stages of dementia that makes her feel this way. there are so many stages that come and go with dementia. wishing you luck
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My mom liked to walk, rain or shine, both before and during her Alzheimer's diagnosis. When it was rainy, we went to a store to walk. She was always athletic, so that combined with "ansy-ness" made her walking almost a necessity. She felt better when she walked. Maybe it was the release of endorphins (the feel good hormone)(from exercise). Since she was prone to wandering, I'd "wonder and ponder why she'd wander," as I trailed her like a caboose. (At least I got my exercise by walking.) She was like the "energizer bunny," but, as others have said, always with supervision, (either from Hubby or me). I think when people are used to having a routine of going somewhere: working, shopping, etc., their brain can go into overdrive if they sit still. I even wrote a book about our travails taking care of my mom called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." Best of luck.
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FarFarAway Jul 2021
I am curious, have you sold any of your books by constantly bringing it up on here? Beyond it being tacky, I wouldn't think it is effective. You could open a facebook page for your book and make it about aging care. Fill it with useful content and grow the numbers. That way people have a choice in hearing about it and you will sell your books well. Here, it is inappropriate. Good luck!
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My mother who has Alzheimers was very restless at the beginning. She couldn't sit still and was crying constantly. She is now taking Sertraline (antidepressant) and Trazadone (antianxiety/sleep aid) which is just the right combination for keeping her calm but not sleepy. Everyone is different. Lately, when she gets restless, it always has to do with the bathroom. Either she has to go to the bathroom or has already wet her diaper. Either way, she doesn't know how to express herself. So she keeps walking around and fidgeting. She has lost the ability to ask for what she wants. "I'm hungry, thirsty, tired, etc." Good luck.
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Again, thank you all for your replies. Each has given me something to consider concerning DW’s restlessness.

The main thing I need to do is to quit worrying! She’s safe, not hurting herself and she is getting exercise.

On another note, I feel blessed to have found AgingCare.com. I’ve been able to share thoughts, ask questions and get answers from such a diversified group of people. God Bless!
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Hometta Jul 2021
Very well thought out. I commend you for accepting that she is okay. I worry about any and every change I see as well. This is helpful for me to read this.

I wanted to ask you if there is a specific time of day this is happening.
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Please have her checked for a urinary tract infection (UTI) as soon as you can. For whatever reason, sometimes there's not much pain in older people and it shows up more as the feeling that they "have to go." Until they don't. But they do seem quite anxious and no wonder—they have an infected bladder, urethra, or in more severe cases kidney. It can become quite severe and they still don't complain about pain.
Don't wait. Then if she doesn't have an infection, you can start looking at other potential causes.
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Could be sundowners if it happens late afternoon, early evening.
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disgustedtoo Jul 2021
While it is something that typically happens at that time of day (hence why it is called sun-downing), it also can happen at other times of the day or even all day!

When still in her own condo, alone. my mother started this OCD behavior just before bed. It was well after sun-down, more like 9, 9:30, 10pm. It started with a few iterations, several times/week and became a nightly marathon, lasting 1 - 1.5 hours!

The only really "typical" sun-downing she experienced was during her first UTI after moving to MC. Later afternoon, into evening she was hell-bent on getting out, going home, had guests coming, etc. She set off every door alarm! Sadly this started on a Friday evening and we could get nowhere with the docs. I felt bad for the staff, as we had to wait until Monday morning to get tested and get Rxes. She had to take anti-anxiety while being treated for the UTI. Once treated, no need for the other med. The only other UTI resulted in night-time bed wetting. She would soak everything, despite Max briefs with a Max pad inserted!

The key is more sudden onset behavior that isn't "normal" for the person. Also, a culture is better than a dip stick. The stick can be tried first and if it's positive, then just go for treatment. However some don't show up without culture. Also, a culture can better determine the right antibiotic to take. Many are very specific as to what bacteria is being treated.
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Sundowners is what comes to mind. Restlessness is one of the symptoms and I would recommend you discuss this with her PCP or doctor that cares for her dementia
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She may have a UTI I would take her for a urine test. It feels like you always have to go because of pressure and maybe she isn’t getting all the urine out . But I would start with that . Good luck 🙏
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I haven't yet read all the responses yet, but this sounds much like what my mother did and it seems to be a common occurrence with dementia. I labeled it an OCD behavior at the time, and found similarities in the sun-downing description. Although commonly sun-downing occurs later afternoon/early evening, it can happen any time of day or even sometimes most of the day. It does fall under some kind of anxiety, so medication might be of help. Just a small dose might be enough to take the "edge" off.

"I have asked her why she was so restless. She tells me “I don’t know. I think it’s because.......uh....because......”."

She isn't likely going to be able to give you an answer. In my mother's case, it was always just before bedtime. It started out a couple of iterations a few nights and became a nightly 1-1.5 hour marathon! We had cameras set up, mainly to monitor the front door. Just before bedtime, she would start checking the door lock, the sidelights, something in the kitchen (camera didn't reach far enough, but later when a brother was there, he identified it as the dishwasher) and then something in the LR (there was a pass-through, so the light would shine on the kitchen cabinets.) Aaaaand, repeat, over and over again. This went on for weeks, up to 1.5 hours/night!

They really aren't even aware they are doing this. My OB tried calling her to interrupt it. One time early into this she said she was just going to bed, but after hang up, she repeated the loop a few times. The other time she told him he got her out of bed! He didn't. She continued after the call. I had to tell him to stop calling - she isn't aware she's doing it and it won't stop the "process."

Tripping the camera would send notice to our phones - mine was set up to get the trip AND an email with a clip, so TWO audible alarms every few minutes! I just turned the sound off on my phone and periodically checked (one would still generate a vibrate.) Once the "trips" ended, I could reset the sounds. He only got one notice, but I suggested he do the same. Not many calls you are going to get at 9-11pm anyway!

So, inquire with doc if s/he thinks an anti-anxiety would help. Ours Rxed Lorazepam, lowest dose. I don't know if mom continued anything like this OCD behavior after she moved to MC, but it's common enough that staff would know how to handle it. We really only used the anti-anxiety for the week of the move and during a UTI (the only time she REALLY had serious sun-downing!) The second round was just enough to take the edge off, not dope her up and avoid the repercussions of sun-downing.

If there's a specific time of day when she does this, then one dose about 1/2 hour before it usually starts should be enough. If it happens randomly throughout the day, then she may need regular doses. The nice thing about the Lorazepam, for us, is it worked the first time, every time, within about 15 minutes and didn't need to be weaned off. There are warnings about being a fall risk, but mom NEVER fell while taking this. Her few falls were merely tumbles and did NOT happen when on the medication - they just happened.

Edit:
Now that I've read through the comments, I'll add one more thought (it was touched on in another reply I posted.) Trying keeping track of the time of day and what preceded the behavior. You mentioned her exhibiting this restlessness after a doctor visit. Routines ARE important for those with dementia and activities outside that routine can precipitate this restlessness, since it is often anxiety driven. If there isn't anything happening before these episodes, but they seem to happen at around the same time of day, sun-downing may be behind it. Sometimes distractions can "break" the cycle, but often this doesn't work. A mild anti-anxiety taken shortly before the time it usually happens can help.

For sure it isn't really harmful for her, but it can be frustrating and unnerving for the care-givers! Knowing what's behind the issue helps, but only a little!
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Call her Dr.
Sounds like she's bored and feels caged in like a lion in a cage walks up and down the cage
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When my Papa had similar behavior, it turned out to be from anxiety. His doctor put him on Trazadone and that solved the problem right away. It also helped him sleep better at night - bonus!
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