Pain associated with ALS

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Hewitt

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Dec 8, 2015
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Reason
Loved one DX
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US
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NC
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Winston-Salem
My sister has had ALS for two years and has been under hospice care for the last 9 months. She has just recently started experiencing occasional pain (as evidenced by increased respirations - she can't communicate otherwise), for which she is given morphine. This has only happened a few times so far, but her husband has been instructed to check her respirations a few times a day and administer the morphine as needed. The nurse said that ultimately their goal would be to give her enough morphine to keep her from awakening and experiencing pain, although she didn't indicate that there was any urgency about her present situation. Is the pain associated with ALS multifactorial, or is it generally neuropathic? I'm sure every case is different, but does this sound as if it might signify a progression in her ALS? I would be grateful for any advice from those who have experience in the course of the disease. Thanks very much--
 
Generally pain is secondary to immobility and increasing weakness that means things are not supported properly. ALS is a disease of motor nerves though it can eventually spread to sensory in some cases. Frequent and proper repositioning and gentle range of motion can help.

Is she now receiving appropriate care? I know things were in crisis mode for a while
 
She has Hospice aides coming in three times a week for bathing and a weekly visit from her Hospice nurse, but my BIL has dismissed the home healthcare aide that was coming in 3 nights a week (much less than the amount Hospice had mandated) so, no, she is not getting enough care. Fortunately, two of her sisters-in-law are visiting this week, and one of them is a nurse, so I hope they will persuade my BIL to get more care, for his sake as well as hers. Thanks for asking, Nikki--
 
Agreed, her positioning in bed, chair(s), wherever she goes should be reassessed by an OT or PT, including support of joints like shoulders, elbows, hips and knees that often require new solutions as the disease progresses. She should also be checked for edema, skin lesions, and massaged regularly.
 
Do you have good and open communication with the SILs? I know there are issues with your BIL. I am concerned she is being given morphine when the true issue is position or perhaps a skin issue that is brewing.

There is nothing wrong with morphine for comfort if that is what is needed just concerned that a simpler and better answer might be missed sometimes. I understand your hands are tied here and there is only so much to be done
 
Yes, I have been able to talk very freely with the SILs, and I have already pointed out several things they can address while they are there (keeping a careful journal of morphine administration, for example, so that the father and son don't administer it independently - something they didn't consider!). I have also urged the nurse SIL to press my brother-in-law to hire more help so that my sister will be turned regularly and receive more care generally. When she went into Hospice they provided a bed with an air mattress, and it has a motor, so I gather it is supposed to shift her, but it is nothing like the fancy constant-motion one Hospice provided my mother (this one feels hard to me). What you said about inadequate support and positioning makes a lot of sense, because I know she was very uncomfortable when she couldn't change position during her Christmas visit, and she has become completely immobile since then. She also has contractures, which must be painful. In any case, I am in contact with the sisters and feel sure they will advocate for my sister while they are there and report back to me on their return.
 
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