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RivalBlue

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Hi,
I'm a CNA doing homecare for a lady that has ALS. I've been working with her for just about two months now. I'm not experienced with ALS patients at all and could use some suggestions.
I work the night shift with her so her husband can get some sleep at night. He was doing it on his own up until a couple of months ago.
The first thing is that she hardly sleeps. She has a sleeping pill prescribed, but rarely takes it because of how groggy it makes her at night. Which I have tried to gently tell her that that's a good thing, and sleep is very important. She generally wakes up every half an hour without it.
Another is turning. Generally its a good idea to turn someone every two hours. She wants to turn about every hour, which isn't a bad thing. I've noticed the last couple weeks though her arms are getting weaker and any movement we do causes her to moan. I'm at a lose of what to do to help her. I just put a pillow behind her bottom to prevent pressure sores, but she has now resorted to snapping at me no matter how gently I do it. She complains of her shoulders hurting and the such. I go as slow and gently as I can but there is only so much I can do. We also have to turn her to put her on the bedpan so there's no getting around not turning.
Also any suggestions for muscle spasms? They wake her up many times throughout the night. We do range of motion 6-8 times throughout my 8hr shift, and stretches. I don't know what else to do that isn't prescribed. She takes a muscle relaxer but I have a feeling she needs a higher dosage. Unfortunately the husband won't take my suggestions and I'm not around when her hospice nurse is in.

Anyway thanks in advanced. She is a great lady, but I get to frustrated because nothing I can come up with seems to be helping her.
 

affected

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Hi Rival,

Does she sleep in a hospital bed? What kind of mattress?

Sleeping and being comfortable in bed is a common challenge for our PALS.

The joint pain can be cruel, and we have to be very careful that limbs are never pulled in any way, and that joints are supported during everything that is done. Rolling can be extremely difficult as it will put pressure on joints or cause limbs to be moved in ways that can hurt the wasted muscles and frozen joints a lot. PALS with joint issues are also very susceptible to muscles or tendons tearing. It can happen with what seems like only small pressure being applied.

So her pain is probably very real.

Does she have a hoist? It may be easier to hoist her over a bedpan than try to turn her to get her on one?
 

Atsugi

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Hello Rival. Good to hear from you. Glad to hear you're concerned for your client's comfort. At the very least, she needs a hospital bed with an automatic rotating air mattress.

I'm sure you'll get lots of specific practical advice here throughout the day and night. So I'd like to give a few very general tips from my own viewpoint, which you might already know, or not.

First, unlike a regular patient, who can be encouraged and pushed through the pain until they are healed,
the ALS patient always gets worse. All we can do is make them feel better, reducing their pain and, importantly, their fear if possible. Make her happy in the present tense. Her future, frankly, is out of everybody's control.

Second, my personal belief is that the ALS patient gets whatever they want, even if it kills them. They are adults in charge, and facing a difficult existence leading to an ending which can be difficult if not managed well. Their choices may not make sense to you, but we support them wholeheartedly.

Third, don't take the snapping personally. When a person snaps at me, I consider that to be simply a symptom, a clue to be analyzed, that will help me care for them and make them happy.

Finally, the husband. His relationship with his wife is a very big deal. If he doesn't want to do something, but you and others push it on him, you would just be increasing his stress, which might increase the wife's stress.

In the end, you'll go away, the patient will go away, and only the husband is left with the emotions, the bills, and picking up the pieces to make a new life. My point is that he matters a lot.

Thank you for doing this. Caring for someone with ALS is, I'm sure you know, a really difficult job. Do it right, and it can be rewarding in a way. I know I made my wife's life and passing the best it could be.
 

Diane H

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As Mike mentioned, a rotating rotating air mattress would be the best for her. It would turn her slowly and gently throughout the night. Even the gentlest caregiver can't turn someone that smoothly. It sounds as though the sleeping pill is just too strong for her. Ask her if she would try Tylenol PM. It has the advantage of some pain relief as well as a Benedryl to ease her into sleep. If the muscle spasms are mucle cramps, Valium, Quinine (Qualaquin, Quinine Sulfate), Mexilitine (Mexitil), Retigabine (Trobalt) are medications that are recommended. If the muscle spasms are a painful stiffening of a larger area, the best medication would be Baclofen. None of these medications will work for both muscle cramps and spasticity, so it is important to determine which problem she has.

All of these things are the responsibility of the Hospice nurse and she should be making time to get your very valuable input on the problems you see the patient having! Since he/she isn't setting that up, you will have to call her. It would also be great if you could attach all the information you have given us to whatever chart or paperwork Hospice maintains on the patient. You have described the problems so well! Putting things in writing always gives them more influence!

Thank you for the great care you are giving and for wanting to find more help for your patient. I hope that when the time comes I will find someone like you!
 

RivalBlue

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Thank you everyone for the responses!

First off she does have a hospital bed. It has an air mattress, but not the kind that will turn her. That's actually an excellent suggestion.

I'm not trying to push or make decisions for her husband, but he is not exactly medically inclined I guess you could say. He does what he thinks is best. I've more just tired to suggest things to him that he could talk to her nurse about or her doctor. I'm no expert to say the least, but I also know she is not comfortable most of the time.

She has a hoyer lift to get to her wheel chair, but getting her into the sling would mean more turning, so it's not going to help with the bedpan situation I don't think.

I think my best bet now is to talk to my boss who is in contact with her daughter, and is the one to make most of the decisions regarding her moms care. I think the turning bed would be of the greatest help right now, especially as I've noticed the disease progressing.

But thank you everyone again for the responses. I just hope I can continue helping her.
 
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