This is all pretty new to me. Need your opinion!


Need opinions from you wonderfully experienced people. I have written before about my 90 year old mother, on home hospice now 4 weeks. The aide and nurse both thought her left hip was dislocated since, practically overnight it became extreme painful and is at a strange angle. She called the Dr and of course, all he recommended was heat and morphine. But since moving her even a tiny bit, and changing her diaper, was so painful, we decided to take her off hospice for a day to get it checked out. The er Dr looked at me like I was crazy for bringing her. The xray showed no problem. They said, which I had suggested to nurse, it is probably muscle contracture, normal with end stage dementia. And since Mom hadn't had a bm for a week, the hospice nurse thought she might be impacted. Again, the er Dr said, which I had suggested, that she isn't going because she isn't eating!

So, anyway, got her home and back on hospice. Yesterday, I was changing her diaper, and saw the start of a bed sore. I put antibiotic cream and a dressing on it. Then I moved her onto her side, and propped pillows behind her.

The aide and nurse both came today, and I had informed both by phone about the bed sore. So, when I got is she laying? Flat on her back! Not happy, and I called nurse and asked why. She said she must have slid down off the pillows. I told her the pillows weren't even behind her, they were stacked neatly at the end of her bed! She said, well, she can be on her back sometimes.

So, opinions please. This is all pretty new to me. I have taken care of her on and off for ten years but this is serious. And they keep telling me to keep giving her the morphine because she is in so much pain. But she is sleeping fine, breathing normally, and only grimaces when moving that leg. I give her a little an hour or so before I have to move her.

Someone needs to write a book on caretaking!

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Barely eating or not eating at all? When did she last move her bowels?

Is she able to locate the pain for you or is her communication not up to it?

I'm not pretending it would be easy for the ER doctor to see what's going on, but I have to say I wouldn't be satisfied with that; and I'd be spitting feathers about the nurse's attitude. Yes, shop around. Ask her GP to come and assess her. If you have a skin integrity or wound care specialist nurse in the neighbourhood, ask for help drawing up a regular positioning schedule and stand over people with your hands on your hips until it gets done. There is little enough that we can do once we're into end-of-life care, but pain-free and well-tended should be the working minimum. I second VS's praise. Best of luck finding better help, please update.
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Well, you might at least get a Geo-Matt (better than eggcrate) or an alternating air mattress, and yes she should stay off being flat on her back unless and until that heals. There could have been a tiny fracture of the hip that was not visible itself and did not show healing on the x-ray yet; the wincing wth just a touch suggests what we call "neuropathic" pain and if she could tolerate a little gabapentin it might help. With the very poor nutrition and everything else though, you are right to have her on hospice as she may not have very much longer. Sorry you are going through this, but I think she has a blessing in you as her attentive caregiver who at least tries to help her be comfortable.
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Thanks! No, the bed sore is nowhere near her painful hip/leg.

She really doesn't have any specific disease...just dementia, chronic uti's, and barely eating. Her heart is just worn out (first heart attack was 40 years ago). I am wondering about the hip...I barely touch her lower leg, knee, or thigh and she winces. Doesn't seem muscular to me.
I may shop around, or see if I can get a different nurse.
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I agree, the nurse and aide seem pretty lax and unhelpful for people that are supposed to be offering you guidance. It wouldn't hurt to do a little shopping around just to see what else is available in your area, you wouldn't be the first here who has had to change hospice providers.
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Is the bedsore in the area where her hip hurts? That might have been causing the pain.

What other issues does she have besides the dementia?

I don't have any suggestions right now but hopefully others will. I do have an uncomfortable feeling though that the nurse and aide may not be as serious as they should be.
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