Palliative care for LO with dementia?

animal friend

Hi,  I am primary caregiver for my 83 yr old mom with RA and dementia.  She moved into our home (husband and me, lots of pets) 3 years ago when she was having difficulty continuing on in her AL apartment.  She has continued to decline and in the last 3 months has had severe falls landing/injuries to her head.  It’s really hard!  First bad fall (face plant, ouch) I drove her straight to ER where they ran a CT scan and after 5 hours waiting told us she was fine.  

She fell yesterday leaving a grocery store this time hitting the back of her head hard on cement. People gathered around wanting to call ambulance but she was scrambling around wanting to get back to car.  She has bad cut on her head but no neurological symptoms and seems fine today.

I’m starting the process to ask her GP to refer us to palliative care because it doesn’t really make sense to run to ER for expensive tests whenever she falls.  Today I took her for a previously scheduled bone scan and blood work for her RA medicine.  Why???

She’s somewhere between level 5/6 and not wanting to eat much anymore (she still loves sweets).

Has anyone else tried a palliative care evaluation and care manager?  I would try hospice care but have been reading up on palliative and found a close by provider.     Thanks

sandwichone123

I have not tried palliative care, and it's difficult to find in my community, but I completely agree with your thought process. My dh has been refusing all medical care since diagnosis (I'm not sure why, but it is partially related to some unexpected bills that arrived) and I don't see the point in pushing him. For me, and I believe to him as well, the worst of all possible outcomes would be for his body to outlast his mind.

ninalu

Hi Animal Friend,
I'm sorry for how hard it is and for your mom's increasing falls and risk. Based on your description of your mom's decline, palliative sounds warranted and as though it could help you figure out how to address her care needs.

My mom's story is similar to what you describe in that she started to fall more at home and this resulted in a fracture which landed her in rehab and then a nursing home. My mom's falls were an indication that she needed 24/7 monitoring and we weren't able to provide that in our house (in-home caregivers were not available for all the hours that we needed them.) 

Your desire to reduce overall medical visits and focus on quality of life, in my opinion, is a good thing and palliative will certainly help with that. They'll also help you know when it's time to bring hospice in. As far as falling goes, I learned that my mom always needed a medical  evaluation after a fall. Even when she reported being "fine", she had inevitably fractured something or hurt herself enough to require after-care. Mom didn't want to go to the ER and would say she was fine and she could make me believe it. What I learned was that she was not a reliable source of how badly she'd hurt herself. Also, sometimes her pain and injury didn't surface until the next day - and then the time it took to get treatment was much longer because it involved scheduled visits and outpatient MRIs etc. As you say, it's really, really hard. 

I hope you can get the support to address what's going on. I say yes to palliative eval.

M1

AF I agree with other posters;  my partner also has rheumatoid arthritis, and her rheumatologist has been great about working with us to maintain her medications but not insist on the same level of monitoring that would be requested of a non-dementia patient.  I would specifically discuss this with the palliative care consultants; you don't want them stopping her RA meds, which would significantly lessen her qualify of life.  But I agree that bone scans and blood work (possibly for methotrexate?) are NOT necessary, particularly if her doses have been stable over a long period of time.