So many aspects to my mom's story. Definite cognitive changes noticed followed by a fall and 3cm subdural hematoma; diagnosed with dementia, taken off blood thinner, subsequently stroked; then had series of UTIs when in rehab. I took her out and to my vacation (single level floor plan) home where she has been for the past 10 months. I was there for 5 months (my husband and kids were also there on and off) with the assistance of aides. Then I had to return to my primary residence as my kids were returning to school. I also work. I had been spending every weekend with her until the past month. Now I drive out 1-2 days/week. Otherwise, she has 2 aides there with her as toileting her with one person was too risky. She has continued to decline cognitively and physically. She would refuse PT at home and would not participate when we would try to do with her. Her ability to bear any weight is now gone pretty much completely and she wails when we try to lift her on commode, get her out of bed and even turn her to change her in her bed. I am moving her closer to me and have contacted hospice. What does one do if even moving patient in her bed causes her pain? My mom has aphasia so she can't communicate where her pain sits, how severe it is and if she is even in pain. I ask her if she wants to get out of bed and she says yes, but then wails. Also, if 2 aides are present, was thinking of a transfer board with gait belt to get her in her transport chair? I know that I am avoiding the inevitable, but I think once confined to her bed, she will just slip away completely. Looking for anyone with experience who can share their thoughts/guidance/experience. Thank you!

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So sorry for what your mom and family have endured.

I know with a physicians script you can get a hoyer from a DME equipment provider and Medicare covers some if not all of the rental. You also said that you have contacted hospice - I also believe most of them can provide you with a hoyer and could ask when you meet with them.

You have stated above about mom having several UTI’s so I just wanted to tell you that I experienced a lot of verbal behavioral noises when mom had UTI’s (my mom had a stroke but doesn’t not have aphasia) - getting washed up and changed or into the hoyer etc while she had infections felt like torture - I was thinking at the time that she was having rapid cognitive decline or pain. I now know what to look for if I am suspecting her of having an infection. So I would suggest getting a urine sample or even some over the counter test strips at any cvs - Walgreens etc and just ruling out infection.
It may or may not change anything as to how you proceed but it could help her overall feeling if the noises and crying out are coming more from the confusion that an infection can bring. (((Hugs))).
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What about transfer machine? Or hoyer lift? Insurance can pay for hoyer but the one I bought out of pocket was very expensive. If you can afford’s the stand-assist lift by Bestcare. You can also purchase sling . I also use additional sling under her bottom….because she can’t stand without machine bringing her up. However, she has to hold on during transfer. A physical therapist can make any suggestions as well. There’s a company I used to use for my mother called “Athomephysicaltherapy” My mother at point where she thinks lean forward is backwards & vice verse. Good luck & hugs 🤗
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Thank you for your input.
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In the crises last year I worked briefly to help out some nursing home residents. One sweet lady resisted getting out of bed & would groan & resist often when rolling in bed. She had dementia, was verbal but only short sentences or single words. I kept asking if she had pain when moved.

One day she was very lucid & said all she wanted was to lie there. She knew she had to be rolled & cleaned up but didn't really care about that. She just wanted peace & quiet. To look out the window at her tree. To have no-one fussing, not be a burden. Just to lie there.

She described so well her desire to just be still.

There was no aim of curative treatments anymore, but for symptom or pain relief. Comfort & care.

I will always remember the blessing of meeting her & the value of sometimes just *being still*.

Michelle, you said "I am moving her closer to me and have contacted hospice".

I am pleased you will have this resource & I hope it is of great comfort to you both. If lifting equipment becomes necessary, Hospice can advise. I believe most equipment can be hired.

Peace to you 🕊️
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MichelleOC May 2021
Thank you for sharing.
My mom recently died in a hospice house. She had excruciating pain towards the end when moved. She was completely bed bound with end stage Parkinson’s disease. The only thing that I desired for her is to die with dignity and free from pain.

Mom was given morphine every two hours when her pain escalated. She was also given Ativan to calm her.

Hospice is absolutely wonderful. They are angels on earth. I will forever be grateful for their service and compassion, especially for mom but also for our entire family.
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MichelleOC May 2021
Thank you for sharing your experience.
MichelleOC - You love and care for your mother a lot. That's obvious.

I apologize if I sound crass. Your mother is suffering and there's only one way out. Let hospice do their work. They will give her meds to manage her pain and keep her comfortable until the end. Isn't that how we all want to go out? Painlessly?

The longer you try to keep her, the longer she suffers. Let her go in peace and comfort.
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