Does anyone deal with a pretty much constant state of "restlessness" in their spouse? For nearly 2 weeks now I have dealt with restlessness in my husb that reminds me of a toddler that cannot sit still. He has never done this before & his mind just seems to be so busy. If I get him laid down for a nap, he's there maybe 5-8 min, max, and then back up, wandering all over the house. He's not hungry, thirsty or needing to go to the restroom; no fever; nothing...just this constant "busy-ness" about him. He will come up to me occasionally and try to talk with me, but when I try to get out of him what is going on, nothing seems to get resolved. Just wondering if anyone has any ideas...
We have been doing the restlessness thing for about two years now. Andrea would take little cat naps all day, off and on, and was always up and walking around. Even now in the NH, she rarely sits still. I go to visit her, and I sit on the couch next to her, and 30 seconds later, pfft! she's trying to get away, walking away. I'll get her to sit back down, and 30 seconds later, zoom, off she goes for another staggering around the room. The nurses say she often walks to exhaustion. It's not a question of 'letting her'; there's no preventing her unless they were to tie her to a chair.
When she lived with me, she would do this during a meal. Eat a bite, jump up and try to leave. We'd tell her to sit down and eat, and start all over again.
The NH solved the eating problem by putting her in an easy chair, and using a TV tray table. She doesn't have the leverage to get up, so she stays to finish the meal.
The situation you describe is the same as what I remember...she'd walk, almost worried looking, all over, and come up to me and try to ask something, but I never could get what it was she was trying to say. She'd look sad, and off she'd go again, starting the whole thing over.
I am dealing with this now. My husband has been pacing all day today. I don't know if it is because my uncle is here doing work in the house or not. I am hoping it is that and the "wandering", doesn't kick in ( I am totally freaked out about that). Everyday I am looking to see what is going to happen next.
I'm dealing with some pacing, but not at the levels any of you are discussing. But my husband isn't at the stage most of you are discussing. In his case the long walks he still can take by himself seem to stave off the pacing later in the day, but what little is still going on starts in late afternoon.
I know that when the walks have to stop, later this year when it gets cold even if he is still capable of it, that I will be dealing with real pacing.
mines pacing the halls as i write! usually about 3-6pm you cant get him to sit down just for a few minutes then it starts up again. i leave water and cookies on a table as he goes 'by'..hahha..like a marathon runner=he eats them and keeps walking. then sometimes he starts moving objects around too. wierd if you ask me. divvi
My DH has been pacing since 830am this morning it is now 622pm east coast time and it hasn't stop . My uncle left 2 hours ago but hubby is still walking around. Doctor just started him on Seroquel about 1 week ago.
I don't know which is worse, pacing or can only walk 100' at a time without sitting down, because of spinal stenosis. I am afraid he won't make it through the winter still able to walk that far. Then he would be chair bound and I would have more problems. lmohr
pacing -maybe I mentioned this somewhere esle. When DH went from sleeping most of the time to pacing I was astonished. This was last Thursday when he couldn't stop for 11 hours. I finally got him on the floor so he had to crawl since he was so unstable he would knock himself against the wall or I had to grab him to avoid his falling. When I looked at his arms and saw all those bruises I was horrified. I think this is the worst experience of my entire life since there was nothing I could do to get him to stop. Now he is in bed ending his life, and every time I see him raise his legs or try to raise up his head I feel panic that he might be able to somehow get the strength to do this one last time.
frand-reading your recent posts is one of the most profound experiences of my life. I am sorry you have to go through this but you are helping the rest of us for lies ahead.
bluedaze - it is so much better to be prepared. My gift to all of you is to relate how it is for me. Of course, every death is different - however, I think I am learning things I hope to never need to know again!
We live in a society where most of us never experience how people die. I certainly never did. My father died when I was 4 years old. They took him away to a hospital where I wasn't allowed to see him, so I never saw him again. We didn't do a death watch on my mother who died in a hospital that wouldn't allow us to stay overnight in any case. Everything was hidden.
Now, mainly because of the hospice movement, people are dying at home again and most of us have never experienced that. So frand, I accept you gift with great gratitude, because I need to know what you have to share.
Starling - I accept your gratitude. Now that we are on 'death watch' I am so much more bound to you as I hope I am giving my DH peace in his final journery. Two days ago I might have sent him off to the hospital. Now, that crisis has past, and I am so thankful that the doctor 'on call' didn't call back! I am quite sure my DH will die at home soon and I love all of you that are on this journey with me.
Divvi - Yes, my husband "moves things" also...chairs, coasters, dirty laundry, opening cabinets, etc...i spoke to his neurologist via email today & he suggested perhaps he has something called akathisia, which may be a by-product of the anti-psychotic drug he's on for behavior issues (Loxapine). He's only on 5mg's a day, but we may have to stop the drug...If you google akathisia and read about it, it describes what many of us have said here. Unsure if your spouses are on any kind of anti-psychotic...will see what the neurologist says after he reads through my latest note back to him. I just feel so badly for my husband because he's just so "unsettled". I think he "knows" it in his mind too -- at least he seems to. This is hard to work through because of the unknown and his inability to communicate with me so I can know what he's feeling. A couple of times he's gotten a "cold sweat" on his forehead too...We are trying to get a urine spec to take into the PCP tomorrow to see if maybe he has a UTI...all this and tomorrow is his 63rd birthday...I am feeling "restless" too now as I deal with this & try to keep my wits about me taking care of everything around here -- thinking with interruptions every few minutes is driving me wacky! And, I'm trying to switch from one anti-dep to another to try to get drug costs down...think all this is causing my sleep to be interrupted and well, we all know what happens when we don't get enough sleep...thanks for all the responses & I apologize for not writing back sooner today...seems like this is the only time I get to "write"....late at night after my DH has dozed off... Frand, still thinking about you & praying for you & do appreciate all you are sharing with us.
My WW (wonderful wife) is ALWAYS fretting and stewing about something. Lately, it's either the channel changer or her wallet/credit cards/money. She works herself up and then sobs for 15-30 minutes. And then when that issue is solved, it's on to another one.
I was looking at The AlzAssoc. website on the 7 stages of the disease. The last time I looked (6-9 months ago) she was a solid Stage 3 with some early Stage 4 signs. She now shows all the signs of Stage 5. (She is 57 y/o.)
Any thoughts on what I can do to help with the (almost) constant agitation? Thank you all - this is a wonderful community.
iggy, I'm not dealing with this, but from what I've read here, this is one of those symptoms you report to your doctor. There are drugs for anxiety, which this sounds like, and some of them work well with dementia patients.
Iggy, Starling is right on. When my husband gets aggitated--worried, can't let ideas go-- I've been instructed to give him an added med (Ativan). A very small dose once or if need be twice a day, only for the necessary time to help him through the episode. Doesn't cause dopiness or anything, just reduces the stress response. If he needs 2 doses a day, I have to cut to 1 before cutting it out. This teeny pill sure does help, because his aggitation, unchecked can lead to more severe behavior as his brain chemistry goe nuts. TRhe regular meds keep him on a fairl even keel, but don't cover extra stress.
Carosi & anyone else using Ativan (or the generic)...when u give this med, how long does it take to work for your LO? Our script says "one every 6 hrs as needed to help with symptoms"...it's .5mg...wondering how y'alls works compared to how ours is working...thanks!
My wife had a VERY idiosyncratic reaction to Ativan the night before her triple bypass - after taking the drug she became schizoid for about 6 hours. I'm absolutely paranoid about her trying it again. But I will ask her neurologist. Thanks for your answers.
His dose is also .5 mg. When needed he gets one at the next med time--usually midday or night. Depending on the situation, he then gets one dose at night or if needed, a dose at midday and night. This is for only a couple days until things have calmed. Then if he's only getting one I just stop it. If he's on 2 a day, I cut it to 1 for a day or 2 then cut it out. The only time he was on it for more that a few days (less than a week), was when there were family issues, I had my colonoscopy, my sister passed away, I had my hernia surgery, and one of his sisters had surgery to clear her carotid arteries, all within 2 1/2 weeks. I started him on one a day a couple days before the colonoscopy , upped it that day, took it back to 1 until the day before the hernia surgery. Bumped it up to 2 and then back to 1 about 4 days after that surgery. Finally cut it out about 4 days after that. He did fine.
iggy, Lynn reacted the same way to Ativan. It took about 5 hours for the halluciantions to stop. It was a nightmare. He does excellent on the seroquel though. Everyone is different, and it may take several attempts to find the right drug cocktail that works best for your WW
Your welcome :) I would talk with her doctor about possible medications you could try. I know with Lynn they steered clear of all anti anxiety meds after his reaction to the Ativan. Lynn had a lot of aggression with the restlessness, so the seroquel was a good choice to try for him. I still thank God daily it has worked such magic for him. Best of luck on finding something that is just as great for your WW ~Nikki
my husband is on.5 ativan, originally I gave it as nec, sometimes giving second does 6 hours later., I now have him on .5 every am with drs permission. Had been keeping him calmer, but I am seeing a lot of restlessness this past two weeks. Also clothing, particularly the buttons and zippers have become a big issue. He is spending 6-8 hours a day operating on his clothes. Has torn the buttons right off sdome things, other things he has literally torn the cloth to get rid of the offending button/button hole. Has also destroyed zippers by pulling them apart. Have just ordered some pants for him without any zippers/buttons. He is losing weight despite eating decently. I thought he was at stage 5-6 but I am thinking maybe he is further along. He knows me, usually knows our children, but can'talways think of their names. Other folks are a mystery to him,
i also have ativan but only used it once at the ER for a uti. dr rx'd .5mg but that was way too much for DH. i would give half of that and it zonks him out pretty good -its such a tiny pill but ohhhh soo powerful. it works on my DH within half an hr. plus it makes him sleepy and smiley alot. i will always have on hand just in case for those days..divvi
Sorry for delay in my answer, natsmom. If given at midday, he'll shortly head in for a nap (1/2 hour later maybe) and get up much better. One per day will pretty much cover 24 hours unless there's heavier stress--then 2 a day does it. Just have to wean it back as he comes off it if he's been at 2 a day. Again that's .5 mg. I haven't needed to resort to using it very often, but am excedingly grateful to have it available "When Needed".
Dr. tried Seroquel on him and he slept nearly 24/7. Barely up for meals. These meds are so great when we need them but we really have to work sometimes to get the best ones for our particular LO.
My husband is mainly late stage 5, with a few early stage 6 symptoms. He now takes a very long walk every day and only paces a little in the early evening. But he used to pace all day. In his case the extra exercise helped. When he no longer can take that walk (too cold, too much ice and snow, or the disease progresses) I fully expect the pacing to go on all day.
I think he may be early. He has never done the go to bed, get up, pace around, go to the chair, sit down, get right up again and repeat over and over again that some people report. It is possible that the border between stages 5 and 6 is where it starts.
I’m mostly a lurker, but I’ve been reading for a long time and I don’t seem to hear about anyone with my particular “restlessness” problem. Hubby (62 and probably stage 5) has to be OUT – ALL THE TIME!! I had to take his drivers license away about 3 months ago – he was arrested for trespassing and taking things from school grounds, without my knowledge that he was even there. Since that time, my wonderful daytime caregiver has been taking him out on the bus FIVE DAYS A WEEK, 5 – 6 hours a day, just riding around. The minute he (or I) arrives home he immediately wants to go for “a little ride” – around town, to the park to walk the dog, anywhere that’s not inside the house. When we return from the little ride he needs to take a little walk around the neighborhood – won’t come in until it turns dark. And he has to be accompanied, according to both the police and his doctor. While out, he picks up things from the garbage, last night took something from an open pickup truck on our street, walks off with things from the grocery store. It’s unending. When he finally goes up for the night, he’s usually, thank goodness, pretty good about it – with the exception of coming out to announce what he’s seeing on TV and coming down several times to rearrange “stuff” in the house. He’s an energizer bunny on steroids – any suggestions???
My DH started the pacing stuff about late 5stage early6. its almost like sundowning as it goes from late pm til he wears out. usally a couple of hrs. i find just letting him do it with observation is good for him to wear his anxiety out some then hes easier to get to bed and stays put. the up/down is at times now. usually i see it connected to needing something-ie-food -hes hungry, or needs a bathroom time. after that he settles in again. i was thinking maybe they become hypoglycemic some with this disease? my DH just craves sugary stuff as many know here is a common factor. once hes had his'fix' hes comfortable again. a drop i sugar levels may be something in common- mine also loves to be out and drive around the city. anywhere is good for him, so we take rides 3times/week w/dogs. if i had mine outdoors 6hrs /day i would think some sort of med would be necessary at that point-i know i couldnt find a caregiver to be outdoors with him all that time! whew, nor would i do it. that seems obsessive. if he is indoors i think the exercise is good for him to an extent. divvi
Lonesome mama, have you discussed this with his neuro? It sounds like it might be anxiety ... maybe a very low dose of an antianxiety medicine would help him calm down a bit. My mother was always calmer when someone "walked" her wheelchair around the corridors of the home, or out in the garden if the weather was good, but it wasn't nearly this degree of energizer bunny.
Carosi - Thanks for your input on how long it takes Ativan to work. We went back to dr. today as still no real relief & she wanted to do more testing to rule out any physical problem since my husb said chest & abdomen hurt...also some discomfort when urinating and a little blood. no results yet, but they did a CT Scan of abdomen & pelvis; bloodwork for poss prostate trouble; another urine test; and a chest xray (some coughing)...he did remarkably well through all!! Afternoon, more of same we've been dealing with. The dr. said we should use the ativan daily, if we need it. I plan to just take each day as we go & do just that. He is miserable when the episodes "hit" and just seems to be out of his mind...not just the pacing and inability to sit still, but the cold sweats, low-grade fever, moving things all around (furniture included), and just misc words about what's happening. I truly believe he KNOWS his mind is messing with him. And it is really hard to watch him suffer like this. Like Divvi, we try food, drink, restroom, cold washcloth, even shower (That did work one time). Sometimes the driving around helps temporarily, but sometimes nothing works and then if I give the ativan it takes anywhere from 45 min - an hour & 1/2 to give him relief. Lots of smiling & eyes closed then for my husb too, but not too much "sleeping" -- just a peacefulness. Thankful for that!
Diane T - My husb has been in stage 6 for a while now, but just started this horrible pacing & unrest on Aug 11. I am hoping that it will not last long -- he is just miserable.
I appreciate everyone asking how we are doing since this last post 6 days ago -- LOL -- actually, we got word today that the test revealed that my DH has kidney stones (non-obstructive, so not too bad), but we will see a specialist in a few weeks. Also seems to have inflamation of the bladder, which would explain his inability to "go" when he needs to. I just thought I'd post this update in case anyone ever has an episode of "restlessness" with their spouse and they can't really explain it. You might decide to do as I did & exhaust all possible "physical" issues before you chalk it up to just "alzheimer's behavior". I hope that none of you ever have to deal with this unexpected 'restlessness', but if you do, well, there's a trail of information for you to review. Hopefully it will help you ~
Please pray for us that Seroquel will be the drug of choice for my DH. I have had to call the psychiatrist 3 times in the last two weeks. He has been so kind and helpful. We did start on a low dose today and my DH was actually able to stop pacing and rest. Although it did make him drowsy, it was a welcome relief to me to have some peace - so I hope it was a good thing for him also. We also are doing a check for a UTI, but everything else seems ok in that area. Internist did give him an antibiotice just in case a culture is positive. It is so hard to know when something is wrong when they can't express themselves. I am happy for those of you who have found relief with the meds. Sometimes this disease brings out the devil in me - this is a subject for the patience posting! I read on some website that meds are only for the benefit of the patient and not to be considered for the benefit of the caregiver. Sort of made me irritated because if we cam't handle the patient then the meds are for them as well as our benefit. If you have not dealt with this extreme restlessness along with terrible confusion then you can't possibly make a judgement about meds.
Alice - Praise God for you to have the seroquel for your DH & hopefully that will be the saving grace for you as well. I know my DH's ativan is a saving grace for me!! It definitely IS to be considered for the benefit of the caregiver -- not just to give left & right, but if the patient is not happy, ain't no body happy!! Praying all will be well with you & your sweet husband.
Well, serequel did not work. We ended up in the er and then DH had a horrible reaction to the ativan they gave him for a cat scan. Also gave him haldol and he became quite psychotic and was admitted to ICU psych ward for 7 nights. He is no longer the same - had to be placed in a locked dementia unit at an ALF. He no longer knows me or our children. He still paces, but now it is continuous with about 3 hours of sleep. He now can only mumble unintelligibly and can not stand or sit still to listen. How long can a person go on like this? He is only 55 and seems to be in middle stage 6. I also feel guilty for taking him to the ER thinking maybe I caused this to happen sooner. He willingly went because he felt he was crawling out of his skin and wanted the dr. to help him. I hope he can adjust to the ALF soon and not seem so tormented - at least thats the way it seems to me since he paces so much. He is like a shell of a person and I do not know what to do except to visit him and make sure he is taken care of properly. I know he is ready to be taken home to the Lord (he told me this about 3 weeks ago before he got so bad) so I pray he will not take so long to complete this earthly journey.
alice,bless your heart,i will pray for you and your dh and children to find peace. my dh is 52 and he is in stage six. no incontience yet,although i try to watch him closely. my heart goes out to you. you are going through my worst fear. this terrible unwanted journey is so unpredictable and scarey. may god comfort you in his loving embrace. jav
I could post under so many topics right now. I searched for this one, because it is what is driving me the most crazy. Not sure if the pacing and wondering around the house is a result of the holiday activities or just new phase. I would say my DH is stage 6b. I would list what he cannot do, but easier what he still can. He can feed himself, dress himself and shower. He is having bathroom issues. He has trouble completing sentences and getting words out. This constant up and down has been going on for 4 months now. Our girls were home for 11 days. That made my Christmas joyful. They worried about leaving me to take care of DH. They both live in different states. I know I am rambling, not sure what I am looking for here. Validation of the pacing as a progression or that it the pacing will eventually stop. I had the flu 2 weeks before Christmas and this pacing did not help. The constant of him saying oh you sound sick. I think that made him nervous also. Maybe it will settle now we can get back into a routine and I finally feel better.
4 months of that would have put me in a padded cell by now. I would suggest calling his doctor and asking for medication for him. I saw in a post above that serequel did not work for someone, but everyone is different. There are many medications out there that can calm the restlessness.
I will call his doctor. I do feel like I could be put in a padded cell. I am an active person but this is driving me crazy. He is rummaging through things. Although he has been rearranging things for years now. He says he is cleaning things out. But really just moving things from shelf to shelf or drawer to drawer. That didn't bother me until he started doing it to my things. I could use a few days. Going to work that out. I also need to follow joangs advice and start working on things now instead of waiting. Should have already started that. I don't know how one more medicine will help, hard to keep him on track with what he has. Things are progressing faster over the last 6 months or more. I know I was depressed for a few weeks and didn't want to look into things, but now I am back and ready to take control again. I think the flu, weather and holidays had me down. But I have read many post and know what I need to do. I always did, but hearing it from others helps. Thanks. Time to start New Year and get busy.
I was told once not to put too much credence in "I should" statements, as they are shaming statements. You are doing the best you can - and that is enough. Good luck with your new goals.