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Active member
Nov 20, 2003
British Columbia
Being Comfy in Bed

Hi Winobertie,

My Mom had ALS and I was her caregiver. She was often uncomfortable too. I used to have her lay on whatever side was comfy for her then pile a bunch of pillows behind her back so she would not fall back on her back. The problem with this is that she didn't have the strength to move the pillows when she became uncomfy, the solution to that was for her to bang on the wall with her cane as she had lost her ability to speak in July. (I know more info. than you needed!)

She often used to sleep sort of sitting up. I have one of those big cushions that have arms on them, they look like armchairs, I know you can get them at The Bay and Walmart here in Canada, we used to pile soft pillows on that so she could sleep or rest without lying flat on her back (she didn't like that at all as she would choke.)

I'm sorry I don't have a solution for your turning over in bed problem, I always helped my mom do this as she lost the use of her right arm.

I wish you peace and comfort. Take care, Sonia Thomson, Burnaby, BC
there is none

hi winobertie

I have had this same problem for over 3 years. It really sucks. I wake up my wife all the time to turn me. I feel bad cause i constantly disturb her sleep. I can't breathe either on my back. However, I have been sleeping with a bipap mask. which allows me to sleep for periods on my back. But I can't stay in one position due to pain on my hips or legs or arms. there is no muscle tissue, so the pain comes often until I am moved to another position. I have only little movement of my neck. Once a week my wife has a care person stay overnight so she can get a solid night sleep. But clearly, that is not enough; . I use the computer with the movement of my head. I have no speaking ability other than my laptop. And to use it i have to be sat up and balanced with pillows. Thank goodness for technology to keep my mind occupied via e-mail and surfing the web.
I am tired of this life.
but these are the cards we've been dealt.

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Thank you Carol.

this disease is a major test of love. Did you ever get so frustrated that you yelled at your husband or his frustrations made him angry. I can honestly tell you that we have our moments. But love always keeps us going. I have completed my 5th year and began my 6th ., quite frankly. I have 2 wishes. I wish I could go on so that I can continue to live with the people that I love. however, I also wish I could die soon and free my family of this burden that I have become. So they can go on with their lives. My wife, being my main care person is the only one who could understand my wants and needs that when I'm left with others, I don't get the comfort or care that I need. that is when I don't care to go on. it may be selfish of me to want her always around. I understand she needs time away but I don't want to suffer. Example (she left me with her sister for a couple of hours. Now under normal situation's that would be ok.but my head fell back to where I was choking and she in a panic not knowing what to do. I almost choked to death. All it took was to raise my head. ) :roll:
:cry: John, my heart went out to you and your wife after reading your post on this thread. After being a care giver for my brother I can understand your fears about being left in the care of someone else who cannot anticipate your needs. I did not like leaving my brother with others and he also did not feel comfortable, he could no longer communicate his needs and after being with him 24-7 I felt like I was a part of him. I could anticipate problems and often would feel his needs as a part of his care.It was almost like we were connect physically and emotionally. No words had to be exchanged, I wish we had more trained people who could walk in and be comfortable with the family leaving and with the person suffering from als being comfortable being left in capable hands. As to be being a burden I can honestly say that the word burden you may feel is in fact a pain. A pain in your loved ones eyes being witness to a slowly robbing physical and emotional monster who has invaded the lives and changed their family forever. No one can ever be the same once als has entered the door, my brother often asked myself or my sister to help him end his life, but for very selfish reasons we could not honour his wishes. I am of mixed mind now on this and being witness to only a year and a half of his pain and indignified loss of human rights I wonder if it had gone on for longer if I may have changed my views. There is not a day or sometimes minute that does not go by that I wish he were still here, although I was not in his body and could not read his thoughts I may have wished to leave as he did. Everyone keeps reminding me well he is no longer suffering but we who are left here are, there are many family members who are suffering deeply and who are very angry at this disease that came into our lives forever changing it. There are some things to be said after being a witness to als, every minute is a gift every day has sunshine every scratching motion drinking motion hugging motion ect.. are now viewed as miracles of life for me somethings my little brother could not do.When I have a cold or some minor aches and pains I do not complain I take every chance I get to tell the people around me how much I love them and I try and appreciate each and any human that crosses my path treating them all as wonders of life. So John if your choices are only to choose to live for the ones who love you so long as you are not in any pain for long periods then maybe your choice to stay is all the choice you have for today. When you choose to go I believe it will be in peace and love surrounded by those you love as my brother did. My thoughts and strength go to you and your wife. Joy
Turning over and associated problems

Hi group;

Thanks to the three of you who responded to my turning over problem. Sounds like there is no simple solution. I also appreciate that your stage of the disease is far more advanced than mine (which perturbs me somewhat because it tells me what I have to look forward to - which I am not).
I have my OT coming over on Thursday with a special mattress and a trapeze to see if they will help with hip discomfort and the turning over problem. I still have quite a bit of arm strength.
In the meantime my wife and chief caregiver would like to know how to avoid straining the muscles in her hands when she helps me transfer by holding on to my special transfer belt? Any suggestions for her?

hey bert

hello again. i'm sorry to inform you of my status. I sure didn't want to scare you. It is not all bad. I have that magic mattress. I have the fluctuating air mattress and it helps plenty. I don't have to turn as much. Sometimes only twice. I also had a track lift installed over my bed . this is where all my tranfers are made. From the bed to power chair or to commode. It slides from my bed to position over to the wheelchair from a laying position to sitting. Your OT will become a close friend. She will provide you with all your future needs. I am so happy to be a member of the ALS society. They have provided me with the loan of much equipment from their loan pool. they are more than just a web site. a lift will solve your wifes stress to her arms. also do not be discouraged. Technology has progressed tremendously. Imagine how I am communicating with you now. And my wheelchair? I control it with very little movement of my foot. So I'm still mobile. imagine that. And sure, I sometimes get depressed but I have no pain and maintain my sense of humour. I have to. I have two teenagers. lol.
so keep the faith brother.


Joy, thank you for your support. You are wonderful to this forrum. actually I remember your kind words from the old website. keep up the good work. I am grateful to your words for me and the many others you have helped. I am sorry about your brother. He was very young l

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hey Bobbie.
find the facts. And then post them. don't assume. and god bless you and keep you? what does that mean? god will bless you and then change his mind?

you nut bar! :D . here I am reading your post. and thinking, oh! perhaps a solution? Then as I read on. I'm thinking. What is this lady talking about. You had me going. I fell for it like a sack of potatoes. Obviously I was so focused, you got me. I am coming off a really bad day. And you just turned it around with that post. Thank you so much. It was fabulous. It is so nice to hear a positive and uplifting sense of humour.

all the best to you and your family throughout the holidays.

:p Hi all, hope you had a wonderful and exhausting holiday season seems to take the sting out of life when you fall into bed exhausted from a season that allows you to give freely to everyone a present and its not their birthday i love it. I make most of my gifts and giving them to all my family and friends is the most fun I could have. It may sound commercial and perhaps it is what you make it but the world could not be a happier place than at Christmas and the holidays it seems people just smile except perhaps the grinches among us but even he soon came to realize what the season really is about. One big party where we can all give freely of ourselves. I spent Christmas this year in the company of my most favorite son (i only have one) and he laughs each time i tell him he is my favorite son, he recently moved to Toronto so he invited me down for a week and he showed me his world it was wonderful. I am so honored to have him in my life, along with my two daughters. We saw lord of the rings on Christmas day and had dinner with some of his friends. Toronto is nice but really too big for little old me but he loves it. Carol and Johnny thanks for the kind words, but really your inspiration and posts have kept me going on in the face of this als monster. I realize this has nothing to do with the start of this thread, but getting back to it the bed John has mentioned was offered to us also through our OT she was wonderful along with the ALS Society equipment was loaned free of charge when money was tight. They were great, hope you all continue to smile Carol I laughed so much trying to imagine you jumping and Henry tossing around in the bed. Love to you all. Joy And I have not heard from Stella hope all is well with her.
turning patients

have not been here for quite some time. My wife and I have been using the pillow method so I may remain on my side, could not breathe on my back.
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