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montagueles77

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Nov 1, 2012
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Loved one DX
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US
State
SC
City
Charleston
Hello,

My father has been battling ALS for 5 years now. Over the past year, his health has rapidly declined. He is having trouble eating (coughs and chokes), no control of his arms, head, and now weakening in his left leg.

The biggest hurdle now is getting him to sleep for more than half an hour. He refuses to lie in a bed because it is uncomfortable for him as he also has sleep apnea, he feels like all control is lost and his mind doesn't allow him to rest. He wants to be moving from chair, to wheelchair, to sitting on the couch through out the night. My mother and I prop him up on the couch, his legs are bent to the side, we then put a traveling pillow to support his neck/head, and pillows on his right side so he can rest his head. However, through out the night, he is just uncomfortable and needs constant readjusting. You can image how much sleep we get. We take turns doing the night shift, and have set up baby monitors so we can hear him when he stirs or attempts to call out to us.

Does anyone know of a better sleeping position we can try, maybe a specific pillow that allows him to move his legs (while he still has that option)? Has anyone experienced this with a loved one or physically? Any advice would be greatly appreciated.
 
BTW....I live in Charleston, SC, but drove to South Texas to help my mom out with caring for my dad. She needs a break as she is the only one in the house. I must head back to SC since I have been away from my younger children for the past 6 weeks, but just can't leave him during these critical times. I don't know how much time is left with him. He refused the PEG and doesn't want any type of life support. Such a MONSTER disease..
 
could you rent an adjustable bed for a week or so and try different positions. i had sleep apnea for two years and used a c-pac followed by surgery. check with your neuro and see if he can try a c-pac. it made all the difference in the world for sleeping longer periods, here again this might be rented or in a loan closest. medicare will purchase. oops just re-read your post, c-pac may be out because of choking
so bi-pac may be in order. coughing may be do to phlem and some suction may be necessary. hope this little bit may help take care
 
As pearshoot said, an adjustable bed can help. If you think you dad doesn't have much time left, have you considered hospice? Because they usually provide adjustable beds when necessary.
 
So sorry your Dad is having these difficulties. Call his ALS Clinic and have doc arrange for an in home assessment from both PT and OT. They can train you and your Mom on how to position him so that all his limbs and joints are comfortably supported. At the same time they can make recommendations for his future transfer needs as his physical ability declines.
BiPap (non-invasive ventilation), can make a big difference in the quality of his sleep as well. I was experiencing frequent awakening to use the bathroom during the nigHt which was relieved by the use of my BiPap. My respiratory therapist explained that frequent awakening is the body's way of getting you up and moving so that you can take deeper breaths and blow off that excess CO2.

Good luck.
 
I'm going to suggest the same thing... an adjustable bed. It can also help you and your mom because some have adjustable height. Contact your closest ALSA chapter, even if it's not terribly close, and see if they have a bed available. If not, you may be able to rent one from a local medical supply.
 
My dad has had ALS for the past 15 months and has declined recently as well. He can't move his arms, legs, hands, etc. either. He has an adjustable bed; however, it's still difficult to make him comfortable so thank you for posting this thread.

He especially has trouble positioning his head/neck comfortably. He keeps the head of the bed at a 40 degree angle because he has so much phlegm/mucus to cough up. We tried the travel pillow too but it doesn't help him. On top of this, he's too anxious to use the Cpap he so desperately needs.

We recently hired an RN to care for him at night. If he comes up with any solutions, I'll be sure to share. Can you ask his doctors if they can advise you on getting in-home care so that your mom can get a little sleep and you can go back to your family?

I hope someone can share some good advice.
 
First of all if you have als you don't need a c-pap you need a bipap one that if you don't take a breathe in 12 seconds it pushes air into you.
Also I sleep in my chair my husband sets my tv on a timer and I usually sleep all night
 
Hi

Others have made some food suggestions. If the doctor orders it, they can get in-home hospice to get him a more comfortable adjustable bed, with hopefully either an air mattress overlay or so,etching similar to keep him more comfortable.

Some seem to sleep better in recliners. A bipap would likely be very beneficial at this point as well, as it will lessen any breathing difficulty, and it's non-invasive, as mentioned.

If he's not comfortable, he's not going to sleep well, but neither you nor your mother can continue with no sleep either. Contact the ALS association in the state for some immediate guidance. Here I'm FL, they will come out to your house. Not sure about your state. Wish I could think of something else to offer.

Of he has declined a PEG and is not able to eat, then at least Hospice can keep him hydrated and comfortable. There are also thickeners that can be added to liquids if he's unable to swallow. I'm so sorry you're all dealing with this.
 
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Sorry to hear you're not getting any sleep! Rog uses a wedge pillow that comes down to his hips so he can use his pillows and turn over, yet still be elevated. I ordered it off the in ter net. He also uses nasal pillows on his BiPap as the full face mask doesn't work for him.

Jen
 
As others have said contact your local ALS chapter. It is the single most important thing that I have done since diagnosis. They have helped me in so many ways. They have gotten me all kinds of equipment to use at no charge and have been very helpful in many ways.
 
Everyone have its own style for sleeping, and I think comfortable is more important than position.
 
Hi nexlar!

I am fully agreed with you. There is no any doubt that a comfortable sleep always play vital role for your sleep well. If we have comfortable beds we position our body in right way.

My wife purchased Ergomotion V100 Series Adjustable Base from Dr Snooze's online mattress store. It is really best for my back pain. I never had comfort like it.

Alex!
 
My husband has always had trouble sleeping...For him...sleeping is positional. He always separates his legs with pillows...I never really thought his sleeping problems were ALS related, but could be. He claims the same thing, he can't get his mind to shut down. I don't always hear him when he wakes up, but he just tends to putter around, or gets up and watches tv in the living room. I would try some elevation of the head, to minimize choking issues, and feet elevated, with padding between the legs..Hope this helps.
 
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