Hospice for mom with no advance directive?

TAbbyB

Hello. Has anyone had to navigate end of life decisions for a LO with dementia who has no advance directive? My mother absolutely refused to discuss let alone commit to writing anything having to do with illness or death even before dementia set in. She's not in end-stage Alzheimer's. It's a blood disease that has us contemplating when/if to call in hospice. Because of her dementia, though, she can't understand the bigger picture and the potential suffering on the horizon for her, suffering that might be alleviated by hospice care. My whole family is struggling to make sense of it all. Thanks for listening.

Quilting brings calm

It’s more common than you think. Remember this - she raised you. So your thoughts on what you might want for yourself if you were in her situation might give you a clue in what she would want. If she were thinking rationally and could communicate them. Was she formerly the type of person that was independent, the type of person that prized being able to come or go as she pleased? How would the person you knew 20 years ago have reacted to her life right now.

FYI - hospice care is care that makes a terminally ill person more comfortable. It’s not rushing them towards their death. It’s just acknowledging that further aggressive or invasive treatment isn’t going to change the outcome and just makes the person suffer more. Hospice provides additional eyes on the patient, makes their life less painful, helps the family cope etc. The eligibility rules for dementia patients are often less stringent. They can qualify if they need additional help in their activities if daily living, are losing weight, etc. Each hospice agency evaluates a little differently.

TAbbyB

https://alzconnected.org/discussion/comment/281380#Comment_281380

Thank you for this. Framing it that way is helpful.

caregiving daughter

Seek out the social worker associated with the hospice that you choose. If you want to work on earlier, seek out the village or city department of health and sit down with one of their nurses. I had to talk to my mom's physician and social worker to get some of this explained to me, e.g., clinical impact of chest compressions. To the extent your mom is on hospice though, the extent of intervention decisions will get more clear.

sandwichone123

Sometimes, since talking about death bothers her, you can ask the hospice people to avoid any terms around death or dying, especially when she is just being introduced to the service. Hospice is some of the best care around, and all free for those on Medicare.

harshedbuzz

@TAbbyB

One thing that helped me work through this with my mom (no dementia, but not willing to discuss end-of-life matters), is this book—

https://www.amazon.com/Being-Mortal-Medicine-What-Matters-ebook/dp/B00JCW0BCY

I highly recommend decision makers and those impacted (siblings, friends) read it.

HB

TAbbyB

https://alzconnected.org/discussion/comment/281386#Comment_281386

Thank you. I agree that speaking to a social worker beforehand would be helpful for our family.

TAbbyB

Good point. I used to work in hospice as a massage therapist and remember doing this with certain people. Your comment reminds me that my family will need to be careful with this as well.