Back pain from hospital bed at home

[herra]

Hey Guys,

My mom is diagnosed with ALS Aug 2012. It's spreading quickly. she can't walk anymore and can only lift her right arm and she is able to sit with support. I have been noticing she is talking very low and slow since lat week. She choked 3 times. And my brother carries her to lower floor if we have to go somewhere. But it's not safe. What is available for us. We received hospital bed which is not comfortable, she is always in back pain. if she can take some kind of sleeping pills to help her sleep. What pain killers people are using ? what can we do to make her overall quality of life better . Please help.

 

[sadiemae]

Many pain pills hinder breathing, but with going for quality of life, the risk is worth it. My husband has severe back pain, and takes hydromorphone, aka Dilaudid. Mirtazapine helps with sleep, as does amytriptiline, AKA Elavil.

 

[Lobster]

The original mattress on my hospital bed was first used during the Inquisition. I was able to get a more comfortable one from the ALS Association "loan closet." The last I heard, the original mattress was being used at Gitmo for enhanced interrogation.

 

[hjlindley]

I take tramadol for pain, Lunesta to sleep, and Xanax to fight the nightmares. Good luck
Holly

 

[Jane]

I am sorry you and your family are facing this disease. The ALS loan closet may be able to get equipment to help your Mom. The mattresses on Hospital beds, are NOT comfortable. An alternating pressure air mattress worked really well for my Sister. Also lots of pillows to support her back etc.
Also check into Assistive Devices Program, you may get financial help to purchase things to help. Contact your local ALS society office or your Mom's Dr to get more info and assistance.
If choking is beginning to be a problem it might be time to talk to Dr about PEG tube, IF Mom is agreeable.
Jane

 

[henry88]

For back pain you may go for tramadol but caution , better consult a doctor before taking any medications as the side effects may worsen the case as you mother might already been taking many high impact medicines for ALS.

 

[herra]

Thank you everyone for providing information. I really appreciate that.

 

[lgelb]

Things I would try before narcotics and antidepressants:
Use a foam pillow that supports her head/neck rather than a regular pillow that she sinks into. For comfort, the pillow may extend slightly beyond the bed.
Tilt her head up slightly (and preferably her back as well if the bed has that option) but then raise the legs up considerably. Of course, let her tell you what is comfortable.
Support her elbows with travel pillows and bend her arms across her chest at night to protect the shoulders.
Use travel pillows under her knees and maybe a foam belt around her lower thighs to keep the hips aligned.
Use ulcer prevention boots for her feet/ankles, connected with a velcro tie.
Frequently back pain, which in my husband's case is caused by dural ectasia and herniated disks, is made worse by misalignment/movement of the body during sleep, and ALS makes everything "flop," ultimately.
If you are financially able, I would consider other medical grade mattresses beyond what the loan closet may hold.
He also takes a small dose of tizanidine (2mg)and gabapentin (300mg) a few hrs before bed.

 

[HelenL]

Look for Abbas Child's posting about how she learnedly to sleep on her back... good tips for staying comfortable. If you can't find it I'll look through the posts that I've copied off.

 

[herra]

thank you guys.

We forced the doctor to move appointment from April to Jan 29. And he was shocked to see mom's condition and told us it will be any time now. They said when she loses breath and we call ambulance they won't give her oxygen.

 

[bob_s]

Hera,

Sorry to hear about your mom. I have a pad on my hospital bed that helps for my back pain. My left leg and arm are weak, so I have trouble moving around in bed. I take Lyrica and a NSAID for pain at night and Lunesta to help me fall asleep.

You mentioned about possibly needing an ambulance at some point. Does your mom have a medical advanced directive? I don't know how Canadian laws and doctors handle it or if you need it. It varies in the US by state.

Bob

thank you guys.

We forced the doctor to move appointment from April to Jan 29. And he was shocked to see mom's condition and told us it will be any time now. They said when she loses breath and we call ambulance they won't give her oxygen.

 

[AKjo]

Helen was going to search for this: https://www.alsforums.com/forum/tip...how-i-learned-sleep-without-turning-over.html

I just happened to have it handy - saving it for when we need it.