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end-stage sign of pain & discomfort?
Posted: Saturday, January 21, 2023 1:13 AM
Joined: 12/22/2018
Posts: 240

Hi all, 
My mom is bed-bound with end-stage Parkinson's and late-stage Alzheimer's. She recently became bed-bound; having previously been bed & chair bound (on days where she was more alert, she would transfer into a Broda wheelchair via the Hoyer lift.) She no longer bears her own weight / walks / or transfers with assist. My understanding has been that the bed-to-chair routine is good for her because it allows her body to shift positions and that helps her to be more comfortable, keeps her muscles more in motion and less painful. The transfers are also stressful for her and scary. 

I'm noticing a behavior now that she's fully bed-bound that I don't know how to interpret. I'm looking for help to understand what may be going on. It does seem to be pain, but I'm wondering if it's also a type of contracture, and if resuming the bed-to-chair transfers is a good thing to try. 

When we change the position of the head of the bed; from upright to flat (either for sleep or for changes and baths), mom seems very uncomfortable. The shifting of bed position must be done slowly and in stages. When she goes flat, she starts to do what look like abdominal crunches; lifting her head / neck and knees in a reflex-like way. Some of the time she definitely grimaces and moans. No doubt that is pain and we treat it. Other times, she doesn't moan or grimace but she looks very uncomfortable and her body crunches into a v-shape. She does seem to get relief by being positioned more upright. She is able to relax and lay flat with a gentle hand and soft voice and encouragement, but it seems so hard for her. 

As far as caring for her at this stage, we do reposition -- roll to her left side, roll to her right side, and centered. When we reposition, we pre-treat with pain meds and muscle relaxants as advised by hospice. The repositioning is getting more difficult. She favors her left side, meaning she seems to tilt in that direction. She's amazingly able to hold onto the bed railings and roll from side to side when being changed. But the stiffness and slowness is increasing. 

Does this sound familiar to anyone? Is mom performing a kind of voluntary stretching and movement to counteract the pain of immobility from being bed-bound? Or could this be an involuntary movement, reflex or contracture of some kind? Maybe this is what happens at this stage and there's no real way to manually assist or remove the discomfort other than pain meds. But maybe there are range-of-motion things I can do, or massage, to help her? 

Thank you for reading and in advance for any advice / perspective.
Posted: Saturday, January 21, 2023 6:12 AM
Joined: 4/17/2018
Posts: 1193

Ninalu you are describing my dw's roommate to a t. I also think it is a contracture. And you are also describing the care she is receiving. 

The only thing I noticed you didn't  mention is they have an air mattress that changes pressure in different places. I can hear it doing it's thing. Sorry I don't offer any advice,just my observations. None of this is easy I am sure others will chime in.


Posted: Saturday, January 21, 2023 7:46 AM
Joined: 12/10/2019
Posts: 369

   You are describing where my husband is at very well. I think we are at the same bend in the Alzheimer’s road . I just had a very similar conversation with his Hospice nurse yesterday about him bending into a c shape. 

    I like that you said it looks like she is doing crunches. That’s a great way to describe it. It’s something that has only been going on for a few weeks but I had a hard time articulating what I was seeing. So thank you for bringing it up because it helped me to understand it and see that others have been to this spot. 

     The scary thing is that when I was describing all the discomfort and the Hospice nurse punched it into her ipad -it came back with a pain score of 7. I said “ you mean out of ten?” It was a wake up call because I really didn’t think he was that uncomfortable. But nurse said that crunching thing isn’t good. 

      We are now going to give meds before changing and bathing. I also see more discomfort at night . So more pain meds there. DH has a pretty bad leg contracture and now contracture of hands so I think that might be it. I do massage that leg muscle to try and get it less tight.  But who knows when patient can’t say where it hurts? I would also suggest an air mattress if your loved one isn’t on one. It has helped a lot to keep DH skin doing well. 

     I hope some of this was helpful- at least to know you are not alone on the road 

Posted: Saturday, January 21, 2023 11:44 AM
Joined: 12/22/2018
Posts: 240

Thank you Stewart and Battlebuddy for sharing that you've seen this before. That's really helpful for me. 

We do have an auto-inflating pressure mattress in mom's hospital bed; which is great. 

I'm going to mention the crunches and question of untreated pain to our nurse when we next see her. Thank you again!
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