Mum having pain in shoulders etc

frost589

My mum has had alzheimers for 4 years now, she went into respite and it gave me a break however she came out with a swollen foot. Since then she struggled but got over it and then she had a uti. She nearly fully got over it but yesterday morning i found her laying diagonally across the bed. Not sure whether she fell in the night and the doctor who came out with 111 team said she may have fell or the pain in her shoulders may be alzheimers. She hasnt got strength to lift herself up on her own. She hardly responds or talks at all now either.

Now she hardly stays awake and just sleeps, its so heartbreaking, any advice?

M1

perhaps a hospice evaluation is in order? You do not need a doctor's order, you can call yourself and they will usually evaluate her promptly.

frost589

https://alzconnected.org/discussion/comment/202894#Comment_202894

do you think the symptoms raise concerns for eol then?

mommyandme (m&m)

I’ll just add my 2¢. IME hospice service, in relation to dementia, doesn’t necessarily mean EOL is within 6 mos as it does for a terminal disease such as cancer. My mom was on hospice at home for almost two years, she had Alzheimer’s. If your moms admitted you both will receive much support. A nurse will come, usually weekly, for medical assessment and can discuss any concerns. Your mom will have a doctor assigned to her as part of the team. A CNA will come at least weekly to bathe and do nails, hair, whatever you need for your moms hygiene and other things too. You’ll have a social worker assigned to you and access to clergy, music therapy and a volunteer that can come and give you some respite time a couple/few hours a week. (I used the CNA time for respite also when mom was still a one person assist). You and your mom decide on the services you’d like/need. Medicare covers hospice at home or in a facility. If there’s equipment needed, bed, commode, walker, transport wheelchair…etc. hospice provides that too. Also meds, oxygen and supplies such as incontinence products, chux, wipes, bed bath supplies, and a lot more if the need arises. I kept my mom on some meds she was taking prior to hospice coming on board, they were ok with that. The meds she was on that they covered were switched over to the hospice doc since it didn’t cost us anything out of pocket that way. They even covered OTC melatonin. The “team” members stay the same throughout. You can discharge hospice at any time if you decide you’d like more medical care than comfort care. Unfortunately there’s a lot of misunderstanding on what hospice can do for families dealing with dementia. Most wish they started hospice much earlier. If you have more than one good option for hospice in your area, you might evaluate more than just one.

Im very sorry you’re on this dementia journey too. It’s just such a life sucker in so many ways. Keep coming back with any questions, concerns, vents etc…. So many wonderful, supportive, knowledgeable folks here. They were a lifeline for me and since I’m still here, apparently still are.

BassetHoundAnn

Mommyandme is right. Do call hospice and ask for an evaluation. My mom has been on hospice for over two years and the weekly additional care that has been provided has been a godsend.

A thought about the arm pain. My mom has had severe arm and shoulder pain. I have wondered whether it is due to Alzheimer's, but both the head nurse at her memory care and the hospice nurses fear it might be caused by aids pulling her by the arms when they are trying to help her into bed or the bathroom. They're not supposed to pull the arms, but instead use a belt for positioning. But using the belt times time, I am told, and aids are often in a hurry.

You said your mother was just in respite care. Maybe the arm/shoulder pain is from aids not using proper procedures to move her?

ButterflyWings

@frost589 Echoing the above comments. Our experience with hospice (2 years) is exactly as M&M described. It is a HUGE resource for us. And I will bet BassetHound is right that the pulling on her arms during transfers has something to do with your DM's pain.

Also, it is very possible her UTI did not clear and it can cause the weakness, pain or even delusion of pain and many other weird, extreme things -- it did for my DH. In addition to the hospice eval immediately, it would be helpful to have a UTI lab with culture. That way the specific bacteria (and antibiotic), if any, can be identified and treated fully this time.

Don't wait. You would be amazed at how quickly your mom may rally with some simple fix. And if she is indeed accepted for hospice support after they come out and assess her now, she can graduate off with improvement of her immediate issues if you want, or upon hospice recertification (90 and then every 60 days for us).