Sleeping on The Floor

[Staying strong]

Hi All... I've been Reading posts now For a Couple years. We are almost 5 years into My Wife's ALS. Just wondering how people handle sleeping arrangements. My wife now can't get comfortable for very long at night. If she is sleeping and I come to bed ( after all my nighttime chores) just the movement of me getting in Bed can wake her. At that point it may take 45 mins to get her settled again.. It has come to the point that I now have started to sleep on the floor next to her side of the Bed. I'm thinking it may be time for a hospital bed for her. After 22 years of marriage it will be tough not to sleep together but we both need rest. Sorry if I'm Rambling. I'm new to sharing. But I feel like it's time for me to. :shock:

 

[Ells]

Hi,

How lovely & caring you sound!

Do you think your wife is comfortable in the first place? Is she sleeping lightly for want of comfort or breathing issues?

Maybe an interim comfort solution is to put an alternating air mattress on her side of the bed, on top of the regular mattress. She'll be a bit higher than you, but you won't disturb her getting into bed nor will you have to sleep on the floor. I understand the delaying of the hospital bed!

 

[Atsugi]

At some point early on, my PALS needed to sleep at an angle, with her head elevated, so we quickly began to sleep separately. My snoring was/is a national embarrassment, so for a short while we slept in separate rooms, with an infra-red camera and microphone keeping her in my sight throughout the night.

When she became mostly bed-bound, we got a hospital bed with air mattress--not good enough at all. So we got a rotating air mattress--much better. We put it all in the living room so that she was always included in everything all the time, and I bought a little bed for me, right next to her in the living room.

Sleeping separately but closely might be the best you can do. Do your best.

 

[lgelb]

She will likely be more comfortable in a hospital bed. The best kind has tilt of the whole bed in addition to elevation of head, feet, bed.

I bought a little bed and placed it next to my husband's hospital bed, close enough that I could touch him from it (you only need a couple of inches on each side for the hospital bed to move).

Best,
Laurie

 

[Vincent]

Between fasciculations, general twitches, weird breathing patterns, bipap machine........ My wife and I have slept in separate beds for quite a while. It's not ideal, but my wife still works and needs decent sleep. Happy wife, happy life.
Vincent

 

[Janis J]

Try to think of a hospital bed as a useful tool instead of something signifying a major new step: a tool that will let both of you sleep better. My husband started sleeping in one a couple of weeks ago and finds it quite comfortable, although we both understand that we'll probably go through various new mattress overlays and maybe even a more sophisticated bed as the disease progresses. His new bed is a couple of steps from my bed so I can easily help him during the night. We shared a bed for al
most 40 years, but lots of things have changed in the last year.

Janis

 

[Staying strong]

Thank you All for the Responses.. While I was at work My Wife contacted Her Team at our ALS clinic and got the ball rolling for a hospital bed.. She enjoys a better night sleep but isn't happy I'm on the floor. I will take the advice of getting a small bed for myself a small bed to be next to her. Just another day in our adventure together.

 

[affected]

It's awful when we have to start separate beds, it is like a big marker in the change of relationship from husband/wife to carer of someone. So much happens to the brain by having all the physical contact that comes from spending a third of our day asleep but in contact with the person we love. If you can set up a bed beside the hospital bed that is certainly keeping as close as you can, as you can still have your hand touching at night.

We couldn't do that here as the rooms were too small. So Chris was set up in the lounge room. This meant he was in the middle of everything, but we both hated sleeping apart, even though it meant we both slept a lot better.

I think it really helps that your wife started the ball rolling. I hope you get off that floor soon

 

[scaredwifetx]

I agree it is awful but needed. I told Steve before he was diagnosed that we were always go to sleep in the same bed. It was very hard when we decided to have him sleep in the hospital bed. I got a great mattress for him and now have a twin bed beside his. I climbed in his bed the first night for a few moments and I cried. It was the start to new changes but w both sleep so much better and I don't have to worry about waking him up when I go to bed.

 

[sunnysierra]

My sympathies over the changing sleeping arrangements. Poignant losses within a stream of losses.
I still share a bed with my PALS and I wake up several times a night. Chris is often in pain from cramping muscles. His legs start kicking, or he moans when he rolls over. Certainly, he isn't sleeping well, although he doesn't remember being active during the night. Once awake, I don't go back to sleep easily so I am often tired in the morning. Coffee has become my friend. I think of Mike telling us he would sleep at red lights. I don't have traffic lights on my way to work, but maybe a stray cow will stop in the road and give me cause for a few moments of shuteye. ;-) Kathleen

 

[Ells]

Kathleen, does Chris take meds for his cramps? If he does, sounds like either the med is wrong or the dose is wrong.
If he doesn't take anything, there are different types he could try, making for a better night for you both (and safer driving!)

Ells.

 

[sunnysierra]

Thanks Ells, he takes Baclofen. Maybe he needs to increase the dose? He takes 10mg.

 

[Ells]

Yes, maybe he does. 10mg of Baclofen isn't a particularly big dose, so perhaps check with his doc.
Prescription strength Quinine is good for cramps, as is magnesium & locialised heat.
Good luck, hope you find a solution.

 

[Nikki J]

If they are really cramps as opposed to spasticity also ask about mexilitine. It can be prescribed off label in the US unless he has a contraindication. It is supposed to be really good for cramps

 

[Diane H]

Baclofen is not for cramps, it is for spasticity. Unless the spasticity is causing the cramps increasing the dose will only make him groggy and weaker. Spasticity is an unlikely cause since they are the worst when he falls asleep. Spasticity is triggered by movement or a touch. Quinine or Mexiltine will work.