This might sound like a crazy question but I haven't been here before. My DH and I have been married for over 20 years and we have always slept in the same bedroom and bed. Lately he has woke up to ask who I am in the middle of the night. At some point I am thinking we may have to have different bedrooms. Have any of you been here and addressed this before? What did you do? How did it go?
When I first brought my husband home from the NH in Florida , we shared our bed. He needed constant help in and out of it (it's very high) and I felt like I needed to keep a careful eye on him, too. Well, one night, he was up without my assistance and when he came back to bed he gave me a sound whack on the head. I asked "what was THAT for?" and he told me that I had a man in my bed with me for the past two hours.....and told me that "that man" was in the backyard! He went downstairs and slept on the couch for the rest of the night. Didn't remember anything he'd said or done the next morning. (wow, he was that mobile, just that short a time ago??!!) Anyhow, I guided him to a guest room for the rest of the time he was home with me. He didn't say much about it.....I tried to talk up how that bed was much safer for him (it was) and that the toilet was just as far, and I installed plenty of night lights for him and a bedrail to make it easier for him to pull himself up. My parents wanted me to shut and lock my bedroom door at night (afraid for my safety after that and similar incidents) but I was afraid something would happen and I'd not be aware of it.
I would love to know the answer to this question also. We have been married for 40 years & always slept in the same bed, however, I keep thinking we both would probably sleep better in separate rooms. He wakes me up numerous times snoring or jerking, so I am constantly asking him to turn over. I have a problem sometimes getting him to lay down, when I am in the bed, so I don't think he would even get in the bed if I were not there. Also, I am afraid he would get up in the middle of the night to go to the bathroom & get confused. I also would welcome any input.
This is something which I feel I'll need to address soon. Ian has 'Lewy Bodies' which cause him to act out his dreams. He is often up in the night, and has even given me a black eye when I tried to stop him from climbing out of our bedroom window. (He would have fallen over 20ft onto a stone terrace below had I not intervened) I've since had the window screwed shut.
I think that when personal safety is an issue, then the sleeping arrangements must be altered for the mutual benefit of both parties. I'm in no doubt, that when the time comes, Ian will be in a guest room at night, and I'll have to make up a story for him as to why this has to be.
Also, if your partner is waking you several times a night, then there must come a point where you need to put yourself first. As a caregiver, I find I need far more energy and strength than I would need if I were in a 'normal' as in partner not sick relationship. If you're being woken at night and losing rest time, then how can you possibly look after yourself as you need to...? Let alone looking after DH.
I guess I should add that I still work full time. My DH constantly talks to me all night long as well. Sometimes I get as little as 2 to 2-1/2 hours of sleep at one time. I'm always exhausted. I do have sleeping pills for him but I only give them to him when his days and nights really get mixed up. It usually takes less than a week to get off track after taking a pill. I also worry that he will get up and leave the house. He has gotten up before and I didn't hear him. It is when he has turned the light on that I find out he is all dressed and ready to go out.
I guess I worry about few things: when he doesn't know me anymore, not getting any sleep and having it impact me on the job, and the biggest one is his safety.
Something that works for me is to tell my husband I have to sit up a while longer--he knows I have reflux and can't lie down right away after eating. So he goes to sleep thinking I'll be back later, but I'm not. It's sort of like lying down with a child to get them to go to sleep, once they drift off, the parent leaves.
Diane, sounds like it's time to have deadbolts put in.
Before DX in Jan 2007 we had a large master bedroom and DH had a "study" with a day bed in it. His snoring kept me awake so much that frequently I would get up and sleep on the coach or he would so as not to keep me awake. This evolved to us sleeping practically full time in separate rooms which was at least partly his idea.
When we moved here I just said that we both needed our sleep and that we should set up separate bedrooms. He was fine with it. There have been times I've felt lonely and would love to cuddle but I resist as I am so afraid since his neurologists think he probably has FTD that would lead to sexual relations, or demands for, which would lead to his demanding sex in inappropriate places or cause rages about the lack thereof. When I first started posting here in 2007 I read about remarks like that in public and about extremes from FTD patients and I just didn't want to take the chance. So I maintain total separation of bedrooms. Before DX he would get quite beligerant when he wanted more than I did and in the few years prior he got that now recognizable "self centered" attitude that sex should just "happen" for him without any effort coming from him. Sometimes it's very lonely and I'd love to get in bed with him and our two pups but I really fear going there......I don't feel like he's my husband in that way....more like my teenage son or sometimes toddler.
With us it was the snoring issue that necessitated separate rooms. I would be awakened several times in the night because of my husband's snoring yet he insisted it was I who kept him awake with my snoring. He would get angry if I poked him to make him turn over. He suggested he sleep in the spare room which suited me fine. I now tuck him into bed as one would a little child and he goes off to sleep happily. I make sure he is on his side and he no longer snores. I miss the warmth of his body in winter but a pair of socks and warm pyjamas help.
I'm just back from Monhegan and it seems that every other husband is on a c-pap machine! And THAT seems to be an acceptable reason for wives to move into separate beds or rooms, whereas they've put up with snoring for years and years. I can't help - mine had to be in a hospital bed after an incident ten years ago, which he readily accepted.
I stopped sleeping in the bed with my husband 2 years ago, when he insisted on putting on the history channel, WWII over & over again. I couldn't get any sleep with the bombs blasting in the middle of the night. I asked him politely to watch anything but that, but even though he said he would, there it would be again. I'm a pacifist, and WWII repeated every night was too much for me, so I started sleeping on the sofa. He couldn't understand why I wouldn't sleep in the same bed, but I just couldn't take it anymore. Plus, by that time, I didn't want sex anymore due to his outrageous behaviour, so why sleep there? I would have moved into the guest room, but no TV there.
KITTY: Hey GIrl! I don't know whether it's really so flippin (thanks Susan) funny or because I had three glasses of wine on an empty stomach at an art gallery this evening, but was truly LOL at the image of these bombs blasting away while you two were in bed. I thought for a minute you were going to say he was.....whoops ....... the wine was about to start talking. Anyway, good to see your post and thanks for the vivid imagery!
Welcome back, Kitty! And Briegull! Glad you had a good trip!
As for me, my husband won't go to bed until I do. He'll sleep in the recliner now until I go to bed, then he follows me. He was getting me up three and four times a night. He needed to go to the bathroom, and if I didn't scurry around the bed, he would go on the floor (hardwood) and I would have to clean it up. He takes off his Depends after I'm asleep. I have to protect my floors... However, the doctor has me giving him Ambien and we have the dosage right and he now sleeps for four hours, then we trek to the bathroom and then he falls back asleep for three more hours. So I'm not so sleep deprived and feel better. However, he has had one accident in bed each night (but I have a bed pad on the bed that got it, thank goodness) except for last night! He was accident free!! And I got more sleep. So hopefully, he will sleep more, have less accidents and I will get some sleep.
I can't go to another room, because then he might fall because he needs help walking, yet he's not ready for a hospital bed. He might crawl out and fall.
My DH and I still sleep in the same bed but it is getting more difficult. He is ready to go to bed by 8:30 or 9:00 at the latest. I look forward to having a couple of hours to myself after he is asleep. Sometimes he bounces right out of bed and looks for me, asking "aren't you coming to bed?" He also does better getting ready for bed if I am in the bathroom with him. We both brush our teeth, floss, etc. He watches what I do and then follows my example. Believe me, I don't necessarily want to get ready for bed at 8:30 - but I do so if it will pacify him to go to bed without me. Any suggestions? It doesn't help that for 26 years we have always gone to bed at the same time - 10:30 or so.......
For about six months, my husband did that...would go back to the bedroom at 8:30 and after 15 minutes would come back to the den nude and clap his hands once (he lost the ability to talk) and I'd say that I was finishing what I was doing and would be back in a few minutes and he would go back to bed and go to sleep and I could stay up until I was ready to go to bed. He finally caught on, and would come back in and sit in his recliner and look at me until I went to bed. I didn't let it phase me, and I kept reading or being on Joan's place!! Then he just started staying in the den in his recliner until I go back and he follows me.
former soulmate: i think you're right, it does seem it's harder to change things after the smptoms set in than before, especially with long established habits. So much of this life has been so hard for me but in reading the posts here I realize how lucky I am in so many ways because we've never had a structured relationship with set in patterns like so many. DH worked and traveled quite a bit and we each had our own interests. My big fear before we started looking for a DX was that I would never survive his retirement as I worked at home and was used to LOTS of time and space. Ha! It seemed like a cruel joke I would not only have to deal with retirement but also dementia and every single thing he had taken care of before would fall upon me. I need to recharge ALONE every night and if I had to lie next to him every night I feel sure I wouldn't be able to feel love and compassion for him anymore. It's that space that enables me to get up and do it again.
Wlhere is Texas Joe and/or Marsh when I need them. Ladies aren't the only caregivers with these kind of problems. As usual, mine is the same, but, with different wrinkles. My DW will not go to sleep until I do no matter what time it is and when she goes to bed before I do, she asks me ever 10 minutes when I am coming and how much longer I am going to be. She has no idea, and doesn't care, what time it is as long as I am with her. Sounds strange, but, this sure gets tiresome after having been followed from room to room all day.
Terry - The sex has also reared its head. That was one of the first things she gave up, and had me give it up too. Last week out of the blue, she asked me if I would like to 'have sex'. No cuddling, no sweet nothings, just sex. I thought it might be a real good idea, but, she had forgotten about it . Oh well.
I have been trying to type this for 2 hours, but, she has interrupted numerous times and always wants to know who I am writing to and then to read what I am writing. I try to be considerate of her, but, I told her no as nice as I possibly could. She has never had to get used to being told no about anything, so it didn't go over very well.
The journey continues. Hope all of you have a good day tomorrow.
This seems to be a real problem for alot of us. My DH however, will stay up till 1 or 2, then come into our room, turn the light on and talk to me. He is also very "interested" in what I have on....so always pulls the covers up to see...makes me insane! Then, he has started snoring, and the strangest of all, his whole body does this strange twitching,or jerking. Whatever it is, I am a very light sleeper, and if he wakes me I have a horrible time falling back to sleep, especially when he falls to sleep in about a minute, and all the moving and noise starts. If I go into the other room, and he wakes, he will yell for me to come back...or he will start around 6 in the a.m. telling me I need to come get back in bed....bummer. I slept in my sewing room after my surgeries, saying I didn't want to keep him awake and I wouldn't sleep good because of being in pain, but the thought of trying to make that my permanent sleeping location makes me cringe! He will have a fit! I almost wish he would suggest me sleeping in the other room, and some of your spouses have done, but maybe I wouldn't be happy with that either....pretty much a bummer.
Dee did'nt like it when I started to sleep in a spare bedroom, but I just explained that we both would sleep a lot better in seperate beds.. She continued to ask that same thing each evening when she went to bed but after a while she did get used to it .. I now get her ready for bed, make sure shes covered properly give her a kiss good night and off I go for a couple hours of R & R ( at home ) She goes to bed about 8 and sleeps till 9-10 the next morning ( wish I could sleep that long,,,,, not really )
I never thought I would ever want to sleep in a separate room. Now I can hardly stand to sleep in the same bed. It is so tiring to care for DH all day that I just wish I had a room of my own. He also jerks practically non-stop when he sleeps. He wouldn't notice because I now get him ready for bed,brush his teeth, wash his face and sit with him till he is asleep and then spend a few hours by myself. We have a screen gazebo on the deck outside our bedroom and I have a queen size air mattress where I sleep most nights until I get cold (when it isn't raining), but that certainly isn't going to work when the weather turns. We have one guest room but my grandson spends several nights at a time out here so I've given up the idea of taking that room. May have to start sleeping on the couch. He never knows who I am in the mornings anyway.
I've been saying it is time for separate bedrooms because of the REM sleep behavior disorder and we will set it up that way when we move. It has been interesting in these 6 months or so between planning that and moving. At first my husband didn't like the idea very much but didn't argue. I started moving to one of the kids rooms (they were both away at school) as soon as he woke me up (sometimes when he came to bed, sometimes when his snoring or yelling woke me up). We have had a month with both kids home and after I tried moving to the guest room downstairs and couldn't get back to sleep there, my husband volunteered to sleep there. I guess I'm lucky that I still get the odd flash of his being concerned for me and I got it on the sleep issue.
I was fortuate enough to be able to put a twin bed in my room for Jim when he was still home. If necessary you could always put in twin beds. I had to have a baby gate halfway up my bedroom door to keep him from wandering because of the stairs. We had a portable commode in the bedroom and also increased his nighttime dose of Seroquel, my wonder drug, to help him sleep through the night.
Snoring, twitching, jerking, talking - I can't remember the last time I had a good night's sleep. My friend had a good idea, I thought. She suggested we get twin beds - I would be where he could see me, but I would not be affected by the movement and would be farther from the snoring. He doesn't like that idea, but I may push it again at a later date. We have 2 spare bedrooms, but any time he has awakened and I am not there, he gets very confused. It may still come to using the spare room in the future, with baby monitors so I can hear if he wakes up confused. We have 2 doors in our bedroom - one to the bathroom and one to the walk-in closet. I am afraid if I am not there, he will go in the wrong door and pee on the hanging clothes (it has nearly happened, caught him just in time).
Wow, I didn't realize that this was as common of an issue. My husband doesn't snore but he does talk to me all night long. When you have to get up at 5:15 in the morning, it is tough! By the end of the week I'm exhausted. My DH also has hand twiching. he is always 'fingering' me. I sometimes wake up with bruses that I'm not sure how I got. How I long for a good night sleep sometime. I guess I will just have to figure this one out.
Elena, perhaps a small sliding bolt on the closet door, so you can lock it at night? If you envision separate bedrooms down the road, it might be a good idea to get him used to the locked closet now? (Just be sure you lock the right door at night.) (-:
My wife has vivid dreams and will start talking in full voice in the middle of the night. It wakes me up and it takes me a few seconds to figure out what is going on. She only speaks a few words out loud and then keeps sleeping. I told her that I may need to sleep in the spare bedroom. I have not as yet but it does not happen that often.
My LO woke me up one night an told me I'd have to leave as her husband would be home soon,hmmmm it was winter so I told her I just got this side warmed up an I wasn't about to move,at this point she relayed the imformation to me that he was a marksman so I had better skeedaddle,just another day at the nuthouse
DH began sleeping in another room, because his snoring bothered me. He eventually got a CPAP, which helped with the snoring, but he has continued sleeping in the other room. I'm not sure what I'll do if he begins getting up and wandering at night.
I'm with Lowesome Mama. Been on the couch for 11 months now. The snoring, the jerking and the wandering led me to the best solution........go sleep on the couch. I can only hear her snore SOMETIMES now, don't feel the jerking and can hear her when she's in the living room/kitchen wandering. Not the greatest sleep though. At best, an hour at a time. Hey, what kind of couch do you have Lonesome Mama? Thenneck
Here's the latest: waking me up in the middle of the night to tell me the baby is crying. In the last 2 weeks, he has become obsessed with the notion that we have a baby. Once when I pushed the issue of the baby's name.....it was Chip, his 42 year old son. So I asked him my name, thinking I must be his first wife if Chip is "the baby," but no, he knew my name. Go figure.
Buzzelena, He sounds like my husband, he doesn't know our sons names, however, when we watch "American's Got Talent" He always says, "Oh, there's the Hoff" meaning David Hasselhoff. Go Figure!
I can remember 2 yrs ago while DH was still on all his meds he was super ansy at bedtime. he was falling asleep in his chair and wanted to go to bed but i had to be there on the bed and he had to TOUCH my hand or arm. even after he was snoring and in his ultimate level of rem:) sleep i would VERY slowly get up and try to sneak out to come to post or read mail. nothing doing! its like he had a built in radar detector that my presence was not there. i always marveled at that how he knew i was gone that far into deep sleep. this went on for 2yrs. almost no sleep for me up/back to bathroom every hr on the hr sometimes doing his business sometimes not. talking to people hovering above him was a fav too. sometimes i just gave in and joined in the conversations with whomever he was talking. i'd say hi glad you are here and he would reach out into the air like touching someone. very strange but you can get used to just about anything so long into the yrs of AD:) i am glad that hes letting me sleep more now and i don thave to get a hospital bed YET. thats the next step i believe- divvi
We still sleep in the same bed, but I stopped going to bed at the same time he did years before dementia. Basically I will NEVER go to bed at the same time he does. He goes to bed between 8 and 9 and I'm up for another couple of hours at least.
If necessary I'll move to another room, but I don't expect it to be necessary until he is ready for a hospital bed. In that case I'll move him somewhere else.
i take my DH to bed about 10. then I begin to get ready, put last minute stuff in Dishwasher, make coffee for tomorrow, check the computer, check the doors, brush teeth, put on night clothes, put dog in crate..... he's usually asleep long before I'm finished. The other evening though, I was watching design star in the living room, and when I came to the bedroom, he was sitting up in the bed, livid. He accused me of having a man in the living room. he could hear us talking. really? it would take way more energy than I have to even consider that.