Hospice Advice
I’m at a loss. My MIL had been living independently with in-home nursing support for the past six years after her diagnosis. She lived in the same home for over 20 years until her landlord sold the property. As her only child, we made the difficult decision to move her closer to us and placed her in a memory care home just five minutes from our house.
The first week seemed promising. She had a burst of energy, participated in activities, and appeared to be adjusting well. But things quickly began to decline. She started PT and OT, and when we attempted to take her on an outing, it became clear how much the disease had progressed.
Just two months after moving into memory care, she suffered a heart attack that went undetected by staff. I knew something wasn’t right and took her to the hospital myself, where we learned what had happened. We chose not to pursue a stent, and during that hospitalization we also learned she had lost 20 pounds in just two months.
My MIL has no teeth and refuses to wear dentures, making eating increasingly difficult. After the heart attack, we made the decision to bring hospice on board and focus on comfort rather than prolonging treatment. She returned to her care home with hospice support, is now on oxygen, and has a morphine prescription available for comfort.
What has been especially difficult is navigating what comfort care actually looks like in practice. The care home will not administer morphine unless she verbally states she is in pain, even though she is no longer able to reliably communicate her needs. They continue encouraging Ensures despite our repeated conversations that our goal is comfort, not forcing nutrition. I’ve also noticed lapses in her daily care, such as wearing the same shirt for four consecutive days.
We have two young children and a home that simply isn’t set up to safely care for her ourselves, otherwise we would seriously consider bringing her home. I feel caught between wanting to honor my mom’s wishes and feeling powerless to ensure she is receiving the compassionate end-of-life care she deserves.
This disease is cruel. My MIL would never have wanted to live like this, and watching her decline has been heartbreaking