What is humane?

quartlow2

When I was in the middle of the chaos it was hard to think straight. I'm a firm believer in hoping for the best but preparing for the worst. My parents prepared their wills, POAs and DNRs many years in advance. They told their kids their wishes and reaffirmed them with every serious health threat. But "quality of life" seems relative at times. Would I be "letting them go" for their sake or mine? Mom made it clear, since her mother had dementia, that she never wanted to live with dementia for an extended period.  Until she fell and broke her hip she was very active, physically, but just couldn't communicate. Her first challenge was aphasia. The other dementia came later. So it was hard to tell when she understood her surroundings and couldn't.

Mom and Dad lived in MC together. Long story short: An aid was assisting Dad in his wheelchair and Mom kept giving him a blanket. He finally tossed the blanket on the floor and Mom tripped on it; falling and breaking her hip. She was taken to the hospital. After a week they sent her to a SNF for 2 weeks. COVID restrictions prevented him from visiting Mom. When I came into town to assist in getting her back to Dad, Dad was so distraught; despite reassurances from family and MC staff. He thought she didn't want to come back to him; that she was mad at him; that maybe she'd died; that he'd caused all of that! Before I could get Mom on hospice, so she could come back to live with Dad in MC, she was taken back to the hospital. She was severely dehydrated and had a raging UTI. I was so angry at the SNF for neglecting her when she was ready to discharge and they weren't helping me to do that! I asked and wondered why a facility wouldn't automatically suspect and test for UTI when a patient's demeanor or activity changes. Antibiotics are such an easy fix to help someone regain their "quality of life"; such as it is. It was touch-and-go but Mom did regain consciousness. She remained bed-ridden and was even less communicative. But we did get her back to Dad where she passed a month later. He needed that time with her; although she didn't respond to his kisses and hugs...until the end when she puckered her lips to kiss him.

So I've struggled with this question and tried to research and lately found this opinion that I could have used earlier in the journey. I still couldn't have let my mom pass in the hospital without Dad but it helps me know what to tell my children about my end-of-life wishes. If I can spell out how to tell when it's okay to let me go, it will help them with a seemingly impossible decision. Maybe this can help someone here in your current circumstances.

https://www.nextavenue.org/why-infection-may-be-good-way-die-0/

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loveskitties

My parents Advanced Directive was far more detailed than some similar documents I have seen.

While it covered the "standard" do not extend life with extreme measures it covered specific types of situations and loss of mental capabilities was one of them.  It covered what was acceptable care and what was not.

This level of detail was a big help when we were dealing with my father's last month of life.  While difficult to do, we knew that he had made informed decisions prior to his dementia, and it was up to us to follow those wishes.