I wanted to ask my mom some difficult questions the last time I visited, but I hesitated -- worried about her possible answers.
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We were already dealing with my father’s weeks-long stay at an inpatient rehabilitation facility due to his Parkinson’s. She has been his primary caretaker for the past five years. We had never discussed, with all my siblings in the same room, end-of-life questions involving his medical care or their future living arrangements.
They seemed to be getting by with help from a paid caregiver, who came daily, and support from my siblings, who live locally.
None of us want to imagine the scenario in which my father cannot be cared for in their home. But his condition now at 82 seems more precarious than it ever has before. For those with significant health conditions, being able to afford continuous, around-the-clock care at home seems possible only for the wealthiest individuals.
The U.S. Department of Health and Human Services estimates that nearly 70% of Americans aged 65 and older will require some form of long-term care during their lifetime. This could mean home health care, assisted living or nursing home care. The cost of any of these can be exorbitant for those who pay out-of-pocket. It’s been shocking to learn how few resources are available to middle class people, even those who have worked hard their entire lives, if they become sick or disabled when they are older.
One of my siblings is a physician and another is a judge, so they are the logical people to ask about medical and legal decisions. Still, we wanted to try to get everyone on the same page on questions that could arise later: Should a parent get a feeding tube if they can no longer swallow? Should they be put on a ventilator if the need arises? For how long and under what conditions? Has the parent expressed their own views on these issues?
I had read everything I could find online about treatment options and outcomes for elderly patients with advanced Parkinson’s. None of that knowledge prepared me for the emotional impact of having to discuss these scenarios with my mom and siblings.
It was hard enough to contemplate these questions in the hypothetical; how much more difficult would it be when confronted with an emergency? What will happen if we can’t come to a consensus?
Like many older adults, my parents have always said they want to remain in their own home, living independently for as long as possible. I’m sure I will want the same thing when I reach that stage of life. So, how do we know when that’s no longer safe or viable? What if your parent disagrees with your assessment?
I don’t know if my father will be able to come home after he moves from the rehab center to a skilled nursing facility. He’s making slow and steady progress, but it takes so much longer to regain strength and basic life skills at this age when you have a neurodegenerative disorder. So much is unpredictable and up in the air with regard to his future care. Statistics suggest that about 60% of skilled nursing facility patients are eventually able to return home. I desperately am hoping he’s in that category.
I couldn’t bring myself to ask my parents where they would want to live if they could no longer take care of themselves. What if we can’t make their wishes happen?
Instead, I asked my mom: What more can I do for you? What do you need from me? How can I better support you?
Showing up to visit as often as I can and helping in limited ways doesn’t feel like enough. My mom said she appreciated my visits. We all celebrated my dad’s birthday together last weekend, and he was thrilled to have all his children around him. She said she would think about what else she needed. She asked me to keep praying for her and my dad.
I assured her that I’ve been praying constantly.