Ok so my mom is in the later stages of this devastating disease dementia! All she wants to do is lay in bed I try to get her up and she will physically try too drop her honey to the floor so she won't have to walk or go any where. We'll she has been sleeping with her legs bent here recently and I notice when I wake she's in same position, so I try and move her legs gently into a straight position. She complains that I'm hurting her! What's going on with her? And how can I help her? (This is the 1st time taking care of my parent and this is the hardest job besides raising kids) But my mom has always been such a strong , happy, caring, give you shirt off her back, hard working, funny, whitty, loving mom!So to see her like this and for her to not be able to say your name or talk to you anymore is heartbreaking! I take care of my mom 24/7 365 days a year! Yes, I have 3 siblings but they are busy with their lives and don't even call to check on her! So it's all on me! So any help or resources would be greatly appreciated..
My mum's legs were exactly the same towards the end. It really does hurt to try and reposition them, so don't try.
Place a pillow under her knees to support her legs and make her feel more restful. Also, if she's that reluctant to get up, she should stay in bed.
It's probably time for hospice (palliative care in the UK) to be on board. They may be able to help with a hospital bed and air mattress. This will help prevent bed sores for your mum and a bad back for you.
If your mum won't get out of bed (or take her weight) to use either the bathroom or a commode, then you will need to use incontinence pads or ask for a catheter to be put in place.
Your mum will need to be cleaned while on the bed - wet wipes or flannel and soap.
Is your mum still eating and drinking? It may be that she stops wanting to. If so, don't force her. I had a battle with my stepdad because he thought it was cruel to let Mum starve. I thought it was cruel to force Mum to take food when her body was giving up and she would struggle to process it. Also, it became difficult for Mum to swallow - choking would be a frightening and definitely not peaceful way to die.
If your mum seems the slightest bit agitated or in pain, ask for as much medication as it takes to make her comfortable. Here in the UK, palliative care nurses came every morning to check on Mum and top up the syringe driver. (Although, I recently learned it's a bit of a postcode lottery how good the palliative care is in each area)
Your mum might go on for ages like this, or this could be the start of a swift decline. You need to be prepared for either.
I would say that if you're finding this too difficult, do consider placing your mum in a care facility. Not everyone is cut out to deal with end of life care.
I wish you well and comfort and peace for your mum.
1. How old is mom?
2. What is mom's diagnosis and prognosis according to her medical team?
3. What do your currently think is quality of life for mom?
4. Did mom make her wishes known about the end of life care she wishes to have?
5. Have you explored palliative care or hospice care to provide you BOTH with comfort care and assistance with bathing, comfort medications and etc.?
What you are seeing now is something that is called "contractures". Go to your favorite search engine and research that. You mother is doing what all elders will eventually do if forced to live way too long, and that it to return almost to a fetal position (we nurses on our ward used to call it "full circle" meaning we complete the full circle of life fetal position to fetal position.)
These contractures result when muscles, tendons, bones aren't used. Bones waste; they need activity to grow and stay healthy. Muscles waste and tighten and tendons pull into a tight band that cannot adapt and adjust. It's at this point that bedsores occur, often lead to sepsis and death.
I am so very sorry. It sounds as though your mom is near the end of her life from the little you tell us of her. And quite honestly, if she is no longer cognizant of your presence, she would be better placed in care of several shifts of people with several people on each shift. This is backbreaking work.
I am so sorry. This long life going on and on in a downward trajectory is heartbreaking torment to witness. I am just so sorry.
I may have been too precipitous, based on this little information, but it is better to be forewarned to be forearmed.
I think part of this is actually in the brain when the brain would "forget" how to keep taking steps so she would squat to the floor.
We experienced the same as you in late stage alzheimers.
If Mom is bedbound I'd consider talking to hospice. We self referred (I picked up the phone and called them and an RN came out.)
Then, when it was clear Mum was near the end, it was decided to stop using them. That was around the time her knees went up.
In the meantime, leave her be in bed without trying to move her.
Good luck.
And it may not hurt to see if your mom qualifies for hospice care as they will provide a hospital bed for free(covered under your moms Medicare)and will also have a nurse come check on her once a week, aides to come bathe her(even in the bed)several times a week, and provide any and all needed equipment, supplies and medications all covered 100% under moms Medicare.
You can call the hospice agency of your choice and they will come out and do an assessment to see if she qualifies.
I wish you well as you take this final journey with your mom.