Old 07-23-2014, 11:10 AM #1 (permalink)
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Default sleeping at night

Hello everyone,

My dad was diagnosed with ALS almost 2 years ago and it's pretty progressive at this point. He can no longer talk and can barely move around.

My question is is regarding his sleeping at night, or rather lack of it.

We are with a hospice and they have been working with us on getting him to take anti-anxiety medications + sleeping aid. We have tried Ambien and some other ones, but it doesn't seem to work. He wants to be turned every 20 minutes or so. It does get better in the morning (after 4am or so). I'd like to find out what have helped you with your loved ones sleeping longer at night? We have ordered a sleep number bed and it should arrive shortly, so, hopefully, it'll help.

My dad is very stubborn and for him to take any medications, it's a huge fight (they are very small amounts... we are trying to make sure he doesn't have any adverse reactions). Our family is falling apart and we really need to make sure that he sleeps for 2 hours at a time (at night).

Thank you.
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Old 07-23-2014, 01:26 PM #2 (permalink)
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Default Re: sleeping at night

>Our family is falling apart

I've read your earlier threads and hope thing are better now.

They are expensive, but ProBed Medical Technologies Inc. beds are highly recommended, fwiw.
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Old 07-24-2014, 06:50 AM #3 (permalink)
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Default Re: sleeping at night

anti depressants actually started my husband sleeping at night, after 18 months of not sleeping it was an amazing blessing.

are they checking how his breathing is going as this could be affecting him too?
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Old 07-24-2014, 08:53 AM #4 (permalink)
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Default Re: sleeping at night

I have to agree with Max that he needs a specialized bed or mattress. The probed is awesome. If you are not going through the VA it is very hard to get approved by insurance. There are also so called alternating mattresses. The sleep number bed is a nice idea but it sounds like he is way beyond that now. I am so sorry
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Old 07-25-2014, 03:05 AM #5 (permalink)
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Default Re: sleeping at night

He really needs a bed that can elevate his feet, head, back and can tilt up and down, and elevate for using a lift. In short, four sets of up/down buttons on the control.

On that frame, you can put any adjustable bed mattress, headboard/footboard if/as desired, side rail(s), etc. Or an alternating pressure overlay, as you prefer. The bed can adjust to the patient, instead of vice versa.
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Old 07-25-2014, 05:09 AM #6 (permalink)
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Default Re: sleeping at night

and Paulette has that awesome bed that actually turns Tim for her!
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Old 07-25-2014, 09:08 AM #7 (permalink)
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Default Re: sleeping at night

Thank you everyone! We are not in VA (immigrants from Russia).. Looked into probed and it's way too expensive. Honestly, I don't think he has a very long time left. He is tired... He has been very depressed and pessimistic as he now has a catheter/diapers. That really shook him... We are trying to cheer him up and do what we can. He has been writing us more and more that he is ready to die...

We have actually rented a wheelchair accessible minivan, so it should make things a lot easier and he can go to different places more often now.

I never thought how hard it'll be.. hard and expensive. We have a live-in caregiver starting on sunday, which was really hard to find. We are in NJ and cannot hire anyone from an agency because they cannot do feeding tubes. This is ridiculous.

Anyways. I spoke to our ALS clinic and they told me to start giving him morphine a bit more often. So last night I gave him a dose at 6pm and double dose at 10pm (per hospice advice). He slept for 2 hours and then woke up every hour. I guess we are on the right path.

Sorry if my comments are all over the place. We are really fighting for him.... I want him to live for as long as he wants to, but at this point he is suffering. I want to make sure he is comfortable.. and happy (at least sometimes). Thank you for all your comments and kind words.
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Old 07-25-2014, 09:29 AM #8 (permalink)
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Default Re: sleeping at night

I TOTALLY understand.

My husband Chris was rapid progression, it was so cruel. We never want them to die, but we can't bear to watch them suffering either.

Follow the advice on meds. My Chris had a very peaceful passing. He knew he was dying, but no fear, no panic, very calm and peaceful and I am now comforted by this for the rest of my life.

We are here, doesn't matter if you are all over the place, I know that feeling well!
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Old 07-25-2014, 09:47 AM #9 (permalink)
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Default Re: sleeping at night

If you have insurance at all at least ask about getting an alternating mattress. The sleep thing is so hard and it really impacts PALS and CALS alike
Good luck!

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Old 07-25-2014, 06:40 PM #10 (permalink)
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Default Re: sleeping at night

I agree Nikki, we had an alternating mattress on a hospital bed that had a good lot of functions. He could press the remote up until only that 6 weeks or so, it was a big freedom for him to do some adjustment himself at night with the remote.
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Old 08-21-2014, 02:57 PM #11 (permalink)
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Default Re: sleeping at night

Thank you, everyone. I just wanted to give you an update..

My dad passed away 3 weeks ago. Hospice explained to us that he was going through a terminal agination and nothing would've helped. Eventually, they gave him enough morphine to calm down..

My brother, my mom and me held his hands when he died. This was truly hell and I really miss him.

Thank you.
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Old 08-21-2014, 03:33 PM #12 (permalink)
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Default Re: sleeping at night

Very sorry for your loss. Glad you were able to be there with him. He is now free of suffering. Wishing you peace and comfort
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Old 08-21-2014, 04:34 PM #13 (permalink)
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I'm so sorry for your loss. I'm glad they kept your dad calm with meds and you were all with him when he passed. I hope that gives you some peace.
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Old 08-21-2014, 07:07 PM #14 (permalink)
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My condolences
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Old 08-21-2014, 08:00 PM #15 (permalink)
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Default Re: sleeping at night

I am so sorry for your loss ... he is at peace. F ALS!
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