Sleeping together

sandwichone123

I know this issue has been touched on, both directions, but I'm curious. How long did you stay sleeping with your affected spouse? All the way until they went to memory care?

I ask because as I'm outfitting my office I'm wondering if I should put a futon in there or something, or if it's reasonable to consider staying in the bed for the long haul.

David J

Hi Dianne. My DW will probably y end up in MC this year. I can’t imagine sleeping in another room, and I don’t think DW would understand or accept it.  At this point she knows we are together and I think moving out to the spare room would be confusing. I think this decision should be based on the PWD’s expectations. Does he understand your relationship?  Would he be confused be by being alone at night and how would you feel?  Lots of emotional issues here and I can only say that it wouldn’t fly here. Good luck and let us know how it goes.

Crushed

Right up to memory care,  However I will say that for over 40 years she slept as far away form me as possible on the bed and we used separate  covers (steppbett  mit uberzuge)  (duvet)

She was happy to share a bed but not a blanket

Joe C.

Similar to David I still sleep with DW who is mid stage 6. DW no longer understands our relationship but she has complete trust in me and often ask if I will sleep with her when I put her to bed. One benefit is if DW gets up in the middle of the night I usually wake and can direct her back to bed. To date she has not had any incontinence issues at night but I think that could be a deal breaker for me.

Ed1937

Like David and Joe, we sleep together. She knows who I am.

Jeff86

Every Alzheimer’s journey is different....

We no longer sleep in the same bed.  DW is late stage 6.  Late last year, I underwent major surgery and when I came home from the hospital I slept in a guest room while I recovered.

I haven’t returned to the marital bed.  Several reasons:  DW sometimes doesn’t think I’m her husband.  Urinary incontinence is pretty much a nightly occurrence.  And while I am devoted to my DW’s well-being, I don’t feel like a husband to her as far as our present relationship is concerned.

DW seems to have accepted the change.  She goes to bed quite early and sleeps through the night.  I am usually up and about in the morning before her but occasionally not.  I am contemplating getting a bed alarm so that I will know if she rises before me.

Ed1937

Jeff, here is the one I use. https://www.amazon.com/Smart-Caregiver-Wireless-Alarm-System/dp/B07RCYD69T/ref=sr_1_1_sspa?dchild=1&keywords=bed+alarm&qid=1619694412&sr=8-1-spons&psc=1&smid=A2TORNECBMNNW4&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzMjZYUFQySkkyMzFVJmVuY3J5cHRlZElkPUEwNzU0NzgxM0dCVEwzU1RHUlZBWSZlbmNyeXB0ZWRBZElkPUEwNTIzNTA0MUg4WVA3OUNKVEZJOCZ3aWRnZXROYW1lPXNwX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=  

The first time I ordered, the unit failed within a couple of weeks. It was sent back, and they replaced it. Then it happened again. This time when they replaced it, it lasted around a year. I ordered a replacement pad, and it didn't work as it should, so it is also replaced. BUT it is perfect for us when working properly. I really need to know when she gets up during the night because if she goes into another room and falls, I might not hear her. So I am either up with her, or I sit up in bed until she comes back to bed. Bottom line for me is that I will order it again when needed. It has a chime that has two or three volume settings, and it can also be taken into another room if you need it there. If I'm not mistaken, it is good for up to 300 feet away from the bed pad.

French

We stopped sleeping together 1 year ago.

He has big pillows that invaded all the bed so that I was pushed in a corner. On evening, I was bitching about the pillows and told him « you'll have to choose between the pillows and me". He took the pillows and moved to another room.

With the lockdown, I had to work while earring him pacing the whole day. His feet also wiggle all night. Night and day was impossible for me. I was getting mad. So I was really relieved by his decision.

My nights are much better. I need a break from this disease, at least the night.

chrisp1653

I could not imagine sleeping somewhere else. Barbara and I had slept with each other for about 35 years up to the point when she was first diagnosed with dementia. For quite a while, it wasn't an issue. Then the physical problems started to creep in. Even then, at first, it wasn't an issue. She would wake me up and say she needed to go potty. I would get up and help her walk to the bathroom, climb back in bed for a few minutes, then get up again and help her walk back to our bed.

Later, as her incontinence progressed - along with everything else - it would become a more frantic " I need to go potty !! " Whereupon I would jump out of the bed and run to her side, throw off the blankets and hope that there was time to get her to the commode before everything came running out.

We made it sleeping together right up until about a month before she passed. It finally became necessary to bring in a hospital type bed, and it would only fit in our living room.  After a few nights there, she told me she missed sleeping in our bed.

That broke my heart.

I know everyone's situation and experience is different, but for me ( us ) this was a no brainer.  We made it up to 38 years, 3 months, and 20 days of marriage. Except for a few scattered times, and that last month or so, we had been in the same bed every night. I was blessed to be Barbara's husband and caregiver right up to the end, and she passed in our home.

For all my grumping and complaining throughout the dementia, and then Parkinson's disease, in truth,  it was a blessing for me to have been there with her right up to the end.

I would not have had it any other way.

papasean

My wife and I still sleep together, that said she has had a few nights when she will get up in the middle of the night and start pacing.  I usually will escape to the den and rest on the couch away from her pacing.

Arrowhead

After almost 6 years we are still in the same bed. However, sometimes she sleeps close to me and other times she is almost on the edge of the bed. I have always slept touching her some way or another. Now, sometimes she lets me and sometimes she won't let me. Sometimes it all changes from one to the other during the night.

Stuck in the middle

I would put the futon in the office so it would be there if I needed it.  Based on what others have reported, in this thread and others, you might need it or might not.

Battlebuddy

    My husband sleeps in his office , which was also our guest room. He once told me about a year and a half ago that he felt so secure in that room with all his stuff around him. He would fall asleep watching TV in there. I knew it brought him peace and security to be there, but in the beginning for me it was very sad. I cried at the loss of our sleeping together. 

    But now I couldn’t go back. It’s really one of the few times I’m not taking care of him. I go in to the bedroom and get a  little bit of ability to shut the disease out . I don’t have to be woken up by his snoring or his loud talking in his sleep. I do have a good baby monitor and check on him if I wake or hear a noise. I also don’t completely trust him any more. So I can lock the door and know he won’t be staring at me or trying to wake me up

sandwichone123

Thank you to everyone! I am happy to hear that it can work all the way to the end. I will admit that intractable incontinence would be very difficult for me to sleep with, but I'm very happy to hear that for many sleeping together has remained a source of connection during difficult times. I may still consider adding the futon, with the understanding that it may not be needed except as a guest accommodation.

Jeff86

Thanks for the recommendation, Ed.  Overwhelming number of choices on Amazon and I wasn’t relishing a new research project!

Ed1937

You're welcome, Jeff. It seems like their quality control could be improved, but when it works, it's perfect for us.

Doityourselfer

I sleep in a nice separate bedroom from my husband.  I consider it a bit of respite from this nightmare of a disease and I sleep much better.

CStrope

@DoItYourSelfer, I agree.  My bedroom is the only place I don't have to be a caretaker.  I can just be me. Everyone is always talking about self-care, but that is difficult for me.  Having my own bedroom is my form of self-care.

Before diagnosis, my DH was such a jerk, that I moved into the spare bedroom because I didn't really like him very much.  Now I stay in there because I like myself enough to know I need that space.

Buggsroo

My husband is an early riser, I am a night owl. I agree with the other posts here that having one’s own room is a respite from the disease. The dynamics have changed so much since he got this disease, that intimacy has gone. He loves the heat jacked up, I hate it. I miss the days when we laughed together in bed. He goes to bed quite early, that makes him happy. Honestly, I am just relieved to be shot of him for awhile, he can be very abusive, I try not to react...but then my temper, you can guess the rest. I say whatever works for you is the way to go.