Thinking about care giving for PWD.

Stori

 I feel like dementia is a grenade. It doesn't just hurt the patient but everyone around them, caregivers, family, even medical providers get hit with shrapnel.  I'm sure Huntington's is similar. And others I don't know of. 

It makes everything so difficult. 

I'm so worried about my mom because she gets up when my dad is sundowning and gets dressed at 2am. She is always working around the house limping because of bad knees. I'm scared she's going to collapse. She's almost 80. But she insists. 

I read that 40% of dementia caregivers die caring for their loved ones. 

That's horrifying. 

It's been an extremely difficult year and especially the past two months. We haven't had a day or night off since 2019. It's unreal what we do. 

LaurenB

Stori- that's a lot of burden for your mom to manage in general and then given her advanced age.  Is she open to the idea of a nighttime caregiver?  That way she could at least get rest overnight?

Pathfinder52

Dear Stori --

The best study I've found on premature caregiver deaths was done here, in Minnesota in 2018. It concluded an 18% death prior to patient for caregivers.

You can get the PDF by putting the title into Google Scholar, it is too large to attach here. But here's the citation for that article:

Gaugler, J. E., Jutkowitz, E., Peterson, C. M., & Zmora, R. (2018). Caregivers dying before care recipients with dementia. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 4(1), 688-693.

The keys to considering the implication of such studies are these:

1. Is the caregiver of a similar age to the PWD? (both elderly, as spouses might be)
2. Is the caregiver's life complicated by one or more chronic illnesses?
3. Are there other health disparities that would increase the caregiver's risk?
4. Is the caregiver inclined to feel great burden or distress in the caregiver role?
5. What about the 82% who do not precede the PWD in death -- what can we learn about THEIR resilience and endurance? (French researchers are working on this)

The best you can do is build your own resilience, engage in activities to promote your own wellness and wellbeing -- practice self-care!

Wishing you the best!
--p