A phone call. I learned so much in that phone call. One of the caregivers who was helping my Dad in Michigan called to say that they had shown up that morning at my parents' house and Dad wasn't there. When they woke up my Mom she seemed confused but said that Dad had gone to the hospital overnight and died. I spoke with my Mom and she was confused but again stated Dad had died. I called the local hospital, identified myself as his daughter and a physician, and eventually given the story of how my Dad came to the hospital via ambulance, had a heart attack and died despite full resuscitation efforts. He was supposed to be DNR. My Dad had struggled with advanced Parkinson's disease, memory impairment related to that and a number of health challenges over the past few years. Now he was gone. What I heard over the phone, from the caregiver and from the ER also confirmed that not only had Dad died but Mom was struggling with cognitive issues.
There had been clues along the way. Concerns from a police officer summoned to our home by an alarm system. Mom just didn't seem all there as she played solitaire on her phone, distracted and confused during his visit. Friends pulled us aside when we came home to visit. Trouble with recipes she had made for years. Caregivers for my Dad shared concerns about her driving. I watched closely when I was in for a visit. She still seemed to be able to navigate the town I grew up in without an issue. She seemed ok, didn't she? And there had been so much stress for her and for us with Dad's illness. Hospitalizations for a brain bleed, a blood clot to his lungs, falls at home and rehab stays. It had all been so much. Maybe she was just stressed. We had caregivers there throughout the daytime to help Dad (and watch Mom?) We couldn't get them to leave their home on the lake that they had built years ago to move into town. And now Mom would be alone and it was increasingly clear that that wasn't safe.
My brother was the first one who could get there. He flew in to be with Mom. Meanwhile in Vermont, we had a 5 year-old birthday party for our son and then jumped in the car the same day and drove straight to Michigan to join my family. The gathering, the tears, the funeral, the stories about Dad and now our focus turned toward planning for Mom.
For the next few months we coordinated family visits with Mom and cognitive evaluations that confirmed a likely diagnosis of Alzheimer's disease. A couple of months after Dad's death, she came to Vermont to celebrate her 75th birthday with us. We toured a senior facility close to my home. As she was preparing to leave, I broke down crying in the airport and begged her to move to Vermont so I could support her. She relented. A few months later we transitioned her to an independent apartment in that senior facility.
We had a little over 3 years together with her in Vermont. Over that time we weathered moving her from an independent apartment to assisted living and then to memory care. The move to memory care occurred in the midst of the Covid pandemic. Restrictions from Covid accelerated Mom's cognitive decline and limited our visits to car rides for a time. She didn't understand what was happening in the world or in her mind. As we sat in the waiting room at the Memory Clinic waiting to see the Neurologist, she asked why we were there? For better or worse, she didn't assimilate the Alzheimer's diagnosis. Despite all this, there were some good times. She got to know our young son. We vacationed in Florida together. Trips with Mom provided new insight into her limitations and need for help with dressing and toileting. We had a scare with her wandering off on the beach in Florida. Wandering down the road at night in Vermont after a musical performance. She continued to know us and her face brightened when we came in the room. But the losses were profound. Mom was a voracious reader who loved language. She now carried around a book but could no longer decipher the words that held such meaning for her. Words were hard for her to find.
A phone call. And then a phone call on a Sunday morning in April to let me know that Mom had died. She died in her own bed. She didn't feel well after a meal, they got her back to her bed and she died before they could even call me. Probably a heart attack. Her DNR and do not transfer were honored. I was devastated but grateful it was quick and easy death for her. Despite all that, I deeply grieved losing her.
In my work as a physician in a sub-acute rehab/nursing home, I regularly accompany patients and families through serious illness, decision making and end of life care. Learnings from these personal experiences inform and guide my work. It infuses my work with humility. I know what it is to care for a parent from a distance, to navigate decision making, to help them transition to new setting, to track the decline. And I know how hard it can be to receive a phone call that changes everything.
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