It's becoming too hard to care my father anymore!

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Alsmess

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Hello,
My father has ALS for 2 years.
He is not able to turn himself in the bed, or move his hands/arms. He never sleeps on his back because he says he cant doesnt feel comfortable of breathing on his back. He sleep or rest on his left or right sight but he wants to turn because he says he has pain around his hipbones/quad-leg bones when he lay on it, and we change it like every 20 minutes if he is awake. When he sleep, he wakes up like every 20-30 minutes at night too. She wakes my mother up like 15-20 times a night to make him turn or fix his hand placement etc. He may be calling my mother 100 times a day.

We bought a special comfortable chair(sofa) to him. He first starts to sleep on the double bed at night(my mother is sleeping in the floor because double bed is just required for my father to turn him to left and right). After 3-4 hours he wants to go chair and sleep there 2 hours and wants to go back to bed. In the day time also wants to move between sofa and bed like every hour. If we dont do the thing he want or offer something else he starts to cry. He has all symptoms , including crying-laughing, bulbar symptoms(hardly speaking, slurring words and it is very hard to understand what he says)

The life started to become unbearable for us. He is mentally weak and this makes the situation more unbearable for all of us. He get sleeping pills but even it doesnt help because he wakes up 20 times a night. During day he wants to move from bed to chair and vice versa for like every hour.

I dont know what we will do. I cant leave home when i want because my mother cant transfer him from chair to wheelchair/bed/toilet without manpower.
Is there any way to make him sleep without waking up so often? Doctor gave him antidepressants and pills to sleep better but although its sedating him it doesnt prevent him wake up like every 20-30 minutes. My mother is having so hard time. Please tell me if you have an idea that can make caring easier.
 

lgelb

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I am very sorry to hear your family is having such a difficult time. There are many possible ways to help, but some of them depend on knowing more about your situation.

Does your dad use a BiPAP machine? Not breathing well is a common reason for waking up, because the person never gets very deeply to sleep. Is the double bed a hospital bed where the head or feet can go up? Those are usually the most comfortable for a PALS. What pills is your dad taking (all drugs, not just the antidepressants and sleeping pills)? Is he using Nuedexta to help with the crying? Is there any way for your mom not to sleep on the floor?

Best,
Laurie
 

Alsmess

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Joined
Jul 27, 2019
Messages
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Loved one DX
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07/2019
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TR
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TR
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Istanbul
He is not using bipap. He is just using antidepressant and sleeping pills, without them the case is worse. He wakes up and says "turn me" or wants us to change his hand/arm/leg position and similiar things.

We bought a 4-motors hospital bed but he didn't get comfortable on it and not using it. Because he never lays or sleeps on his back, he is sleeping on his sides and turning from left to right or from right to left on a single bed is much harder for us and requires much more power. So he sleeps on normal double bedroom bed. Its a normal comfortable bed and the issue is not about bed's comfort quality. He just wakes up and wants to turn. The thing is that the life is harder for my mother because it is so hard to care my father in these conditions.
The doctor increases sleeping pills from 50mg to 100mg and then to 150mg, there is not a big difference. He is sleepy and sedative after taking pillls but still waking up 15 times a night.

Even i can not leave the house when i want for more than a few hours. Because my father wants to go to toilet many times in a day and he has to be lifted by a man power from bed/couch/toilet.
I will buy a lifter for him so i can at least leave the house more easily. But my mother will still have nightmare nights and we can not find a way that make him sleep better and do not require wake my mother so many times when sleeping.
 

lgelb

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Has his breathing been evaluated lately? Sleeping pills generally make it worse if he needs a BiPAP and is lying flat. The fact that you say he finds it hard to breathe on his back suggests strongly that for his breathing to be supported, that he needs the machine.

I understand what you mean about the bed, but sleeping flat is also bad for breathing and causes more pain for someone who cannot move and so is "lying over" all his joints. Having an angle for the head and lower body usually helps people wake up less.
 
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