Desperate for SLEEP

[COlisa]

Dave is still not sleeping. He requires turning every 45 min or so. Between 10:30 pm and 7:30 am I am up at least 10 times during the night turning him to and fro. On his side, his shoulder gets sore (the muscles are totally atrophied in shoulders). On his back, saliva & mucus run down his throat and makes him cough. No matter what combination of pain & sleeping drugs we try, he still wakes and rings the bell next to his head as he is so uncomfortable.

We have tried gel mattress, special foam mattresses, alternating air pressure mattress, all with the same result.

This has been going on since February. I am a walking zombie. Have had to take a couple of weeks off work to get him over a scary bout of pneumonia, so have been able to nap during the day lately, but have to go back to work again soon.

Any suggestions?

Thanks,
Lisa

 

[Katie C]

Couple of things... first, an adjustable or hospital bed so that when he IS on his back, his head and shoulders are raised.. this could help make him more comfortable. Second, and I think this is probably the more important... you need some help. Have you looked into hospice? Or hiring a health aide? You need someone that can take over the turning duties for a block of time so you can get some sleep. We caregivers like to believe we can do it all... but you're not going to be able to help him at all if you collapse from exhaustion!

 

[COlisa]

He has had hospital bed since January. When he is "on his back" he is actually sitting up in bed, propped with pillows on the side as he has no muscle to hold him up. The saliva and mucus still get in his throat. On his side, the shoulder just gets too sore. He is on hospice. They are the ones perscribing all the combinations of meds: painkillers, sleep aids, antidepressants.

 

[Katie C]

OK, if he is on hospice, they should be able to send someone at night to give you a break!

 

[irismarie]

SO sorry you have so much pain and trouble
Wish I could send more than love

 

[COlisa]

Katie, what is your experience with respite & hospice? Hospice here does not provide respite care, just medical support. They only provide a CNA 2-4 hours per week between 8am-5pm and even then not much use as they will not do hoyer transfers alone, administer meds or do PEG feedings, so I need to be here and awake anyway. Kind of a waste.

They will come at night only if emergency (i.e. if I think he is about to die).

I only have a choice of 2 hospices here that my insurance cover and they both work the same way.

Thanks,
Lisa

 

[Katie C]

wow lisa. We had Kaiser insurance so we had their hospice... they did administer meds if needed while they were here. They provide volunteers to stay with the client so the caregiver can run errands, take a nap, whatever. Can't tell you about transfers as it wasn't an issue for us. We had CNA 3x a week for shower, shave, etc. Plus social worker, chaplain, etc. If we needed more help than we were getting, we could discuss it with the case RN or the social worker. The RN was coming 1x a week, but the plan had been as he weakened, it would increase. The hospice company when my mom was dying provided rn or lvn care 24/7 for the last 3 weeks of her life. Not sure what state you are in... maybe that makes a difference? We are in California. Mom had medicare with United Healthcare supplemental. We had VITAS hospice for her. They were nothing short of amazing.. administered meds, went with her to the dining room (while she was still mobile) to monitor her food intake, etc etc. They became like family.

 

[stephie]

One thing that worked well for my husband when he was still sleeping on his side was a body pillow. I put it in front of his belly and shoulder so that he could actually roll a little farther forward than when he just balanced laying on his side. I bent his knees and put one knee over the pillow and one arm over the pillow. This took the pressure off the shoulder so he could sleep on his side longer. When I had to roll him to his back, I didn't even have to get out of bed. I just rolled him to his back and raised the head of the bed with a remote.

I hope you find a solution that works. You shouldn't have to try to function with such little sleep!