One of the toughest challenges I faced when caring for loved ones with dementia were the medical choices for non-dementia care issues that erupted and threatened my parent’s well-being.
A recent opinion piece in The Washington Post by an Emergency Room physician titled Doctors are torturing dementia patients at the end of their life. And it’s totally unnecessary illuminates the reality of the choices families face when caring for aging parents.
My family faced these difficult choices twice.
My father in a moderate stage of Alzheimer’s had a tumor on the back of his tongue. Knowing our parents were doing better together than they would alone, and in the hope that we would eliminate the pain my dad was feeling but could not verbalize sent us on a path to try and treat his tumor. After a week of medical visits we saw that our dad was not up for a fight with cancer. We worked to find him some relief through hospice care. Thankfully, his end came quickly.
When my Mom broke her hip in her Memory Care community and ended up in the hospital, I knew the end was near. The recommendation was to perform surgery but that required we lift the Do Not Resuscitate order. My mom no longer knew my name and I wondered if the stress of the trauma resulted in another stroke. I had to repeatedly ask that we let “nature take its course” while the hospital kept trying to certify my mom for surgery. My mom was clear that qualify of life was more important than quantity, and I knew the surgery would be painful and not provide improved quality to the rest of her life. Thankfully, the medical team agreed that she was able to survive surgery and we moved her into hospice care.
I still end up in tears recounting both of these stories, however I know it is important to make sure other families know that it could be one of the greatest acts of love you offer by taking the path of least medical intervention. I’m glad to see Dr. Geoffrey Hosta share his medical insight that reaffirms the choices my family made. At least I know we did our best to honor their end-of-life wishes. Reflected.
Sad and I believe this to be true. Why put your loved parent through a challenging medical situation when it can do more harm than good. Sigh…….
When you are in the midst of these choices, it never feels easy. I am thankful my Mom shared her views clearly in the normal course of living so it was easier knowing I was doing what she wanted.
Such a good lesson. I watched both my parents- my mom making decisions for dad where he and she had discussed and he made wishes clear for no extraordinary measures. He died at home but we found IT WAS EXTREMELY IMPORTANT THAT IN THAT CASE THAT HIS MEDICAL DIRECTIVE BE POSTED ABOVE HIS BED. So I literally nailed it right there much to my mothers objection— but in a couple crisis it was helpful when nurses and medical professionals came in to administer care.
Later, when mom was in memory care, she had a tumor on her leg at age 96. She was slowing down and her memory was fading but otherwise in great health no other issues. The tumor was not impairing her activity. Doctors wanted to operate and felt it as malignant. I had a heart to heart with sibling; director, social worker, friends and considered quality of life; recovery, risk, and short and long term for mom. We decided surgery would be too confusing and disruptive to mom and opted out. We also discussed how mom would be treated in memory care when she was dying from whatever…i hadn’t asked that nor considered. The Memory Care team explained about hospice; mom would be able to stay in her room, not go to a hospital, doctors could come in, no extradinory care, surrounded by caregivers she knew, dignity til the end.
Mom passed away 3 months later NOT due to tumor but dementia. Because of these early discussions just months before—that’s exactly how it played out. It was so special and peaceful and loving. Her last days were wonderful and non-drama for her and her family.
This is in contrast to what I’ve experienced with others including my father in law— where there is denial and refusal to have open and honest discussions with family members or loved one ahead of time.
Thank you for sharing. Yes Advanced Medical Directives are helpful, but they don’t cover a lot of issues. There was no question or directive that said “If I have a moderate stage of dementia” — maybe that will be in future versions. It’s a testament to your parents that the family could have difficult conversations. The more you know and the sooner you face it, the better off everyone will be.
I should add that mom did have AMD on file. But it is advisable to have detail plans for other details beyond the AMD for how your loved one wants to be treated or pass away.