Pain meds

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Mikeb1too

New member
Joined
Nov 28, 2022
Messages
2
Reason
CALS
Diagnosis
06/2022
Country
US
State
IL
City
PEORIA HEIGHTS
my sister has als and was diagnosed in june , she has steadily declined since then and is in pain all the time now , she is bed ridden and her son and myself have been taking care of her , she is on hospice and has been for two months , the first hospice nurse neglected to order her pain meds , and was pretty much all around neglectful and i asked for a different nurse , second nurse started off great and then forgot or just didnt order her pain meds twice now , is this a common thing ? it is heartbreaking to watch my sister screaming in pain because we have to give her less meds until the new meds get to her , i have called the hospice supervisor twice and she keeps telling us that not getting her pain meds is unacceptable and i agreed , i ask why this keeps happening but get no answer , i was told since she is on hospice this would be for comfort care and it has been anything but that , i hope this is not normal
 
I am very sorry to hear about your sister, Mike. It is not normal for any PALS to be screaming in pain at the end of life. I would want a medical/PT evaluation to make sure she has the right bed at the right angles, with the right cushioning for her joints and passive range of motion exercise in bed if she can tolerate it. I don't know why she's no longer transferring, but that could be re-evaluated as well.

You have the right to ask for an evaluation and the right to change hospice agencies, or to forego hospice entirely (the latter option would make it easier to get PT/OT/nursing/home health services if she can benefit). You can also get pain meds through her primary care provider or clinic if need be, with or without hospice participation. Does she still communicate?

Let us know how we can help.

Best,
Laurie
 
yes she can still talk but its limited , she has been through 3 air mattresses and none are comfortable to her ,she has pain just by being touched even in the most gentle way , her legs ,her arms , her back and her buttocks and the back of her head , pretty much anything that touches the bed or even a heavy blanket , heat seems to help a little and we use a heating pad and even an electric throw blanket , but she gets hot very easily , they have upped her morphine to 1ml per hour today and it has helped as long as we can get someone to order it , thats the problem is getting the nurses to remember to order it when we tell them its needed , since it been upped to 1ml per hour 30 ml bottle , we will have to order one almost everyday with being without 3 times already i have no trust anymore in her nurses , my partners mother died last year and was on hospice as was my own mother 6 years ago with breast cancer and we never had any issue with getting their pain meds or with anything else and i had great respect for those nurses and thats why i dont understand why this keeps happening
 
What about a regular medical foam mattress for the hospital bed, with a latex overlay? An air mattress is not right for everyone.

I always recommend heat underneath where it is more even and effective, using a low voltage heated mattress pad that can be used on a hospital or other adjustable bed. That would reduce how heavy her covers would need to be to keep her warm. There are very light synthetic blankets, quilts, and comforters.

Again, you can get an rx from another source and administer it yourself. And of course they make bigger bottles and more concentrated forms of morphine.
 
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