Helping my 94-year-old mother die

Death is inevitable. Several years ago, when I talked with a patient about her cancer diagnosis, she reminded me that we all have expiration dates. And yet, we live in a culture that prizes youth. In medicine we do all we can to save a life, unless we are directed otherwise. And even then, we struggle.

Over the last decades, faith communities and health organizations encourage people to talk about advanced directives, end of life planning, with their physicians and family members. There are a number of wonderful web sites that can help families to do just that. Books have been written on the topic. On Being’s Krista Tippett did a lovely interview with Dr. Atul Gwande on his book Being Mortal.

Thankfully, we have evolved beyond Sarah Palin’s death panels. Medicare now pays for these discussions. Medical students learn early on about advanced directives and the importance of the health care power of attorney. However, too often patients and families resist such discussions. Health care staff still fail to honor advanced directive requests. These failures cause extended suffering at the end of life for patients and their families.

Over the last four years I have been helping my mother die. As the oldest daughter of five and a physician, I am her health care power of attorney. After my father died, mom had several falls that forced us to move her from her cottage on a senior living campus into assisted living. She wasn’t happy when I broke the news. She refused to live with any of us. Her father had lived with our family and she “didn’t want to do that to us.” While growing up in a three-generation home on the farm had been wonderful for me, it must have stressed her, so we respected her choices. Her Catholic faith was important to her and she wanted to be able to attend daily mass. My father had saved well, and mom had the money to afford assisted living. Mom and dad had a happy marriage for 62 years, but she’d enjoyed her independence since my dad’s death, and she was reluctant to give that up. We tried hired-nursing help in her cottage, but that had its downsides.

Mom adjusted to assisted living and then COVID came. The facility dealt with it poorly, as many institutions did. A year into COVID, my sister took mom to live with her in California. But after 4 months, mom wanted to return to assisted living where she could be close to Fran, her 60+ year old Down Syndrome daughter, and a faith community. Shortly after returning, mother had a stroke that paralyzed her left side and she began to show some beginning dementia. She didn’t want to do physical therapy to regain strength; she’d never been one to enjoy exercise.

I tried to visit every six months, alternating with my other family doctor sister. Mom had a medical advocate visiting every 3 months. My other sisters and cousins saw her routinely. There was lots of advocating to do: medication errors, falls, wanting to send her to the ED for this or that, trying to manage her anxiety, ordering diapers and wipes, menu selections, organizing foot care and hair cuts.

Both mom and dad had been clear about their advanced directives as they inched beyond their eighties and lost their energy and ability to do the things they loved. Now wheelchair bound, Mom qualified for hospice which gave her more assistance and we could stop nursing home staff from sending her to the hospital when she became confused, tried to get out of her wheelchair or bed on her own, and fell.

Gradually her body failed her. Incontinence, forgetting words, difficulty feeding herself, often anxious and perplexed. She had lost her independence and now she was losing her dignity. We hired agency aids to help her stay in assisted living. I spent the Christmas holidays there helping the staff aid while the hired-aid took the week off. It became clear that Mom required too much assistance and needed to go to the nursing home wing of the complex. Because mom had spent countless hours visiting and advocating for Fran while she was in the nursing home, Mom was upset about the move. As the oldest, I was responsible for telling her.

At that point, I started praying for her to die. She would have hated living like this. My sisters and I each had the same conversation with her: Mom, I love you, I’ll miss you, we’ll be fine without you. We’ll take good care of Fran. Please, go join dad.

Mom would smile and say, I’m not ready yet. We wondered what she was waiting for; whom she worried about. But she couldn’t articulate what she needed to do, or what we needed to do to help her move on.

Nursing home staff loved her. She was so kind and sweet, and never asked for much. During a visit, a year ago, I realized she had developed left side neglect; she wasn’t aware of activities on her left side. I turned her bed around, so staff and friends approached on her good side. I continued to pray for her to die. She would have hated this undignified existence.

Staff at the nursing home were stressed and care often inadequate. Understaffed, her call for help could be ignored too long. Often agency staff filled in and they didn’t know her.

But she continued to eat. What kept Mom living? I continued to pray for her death. Was that wrong of me? We were running out of money. Did she have any control or was a primal survival pathway activated?

When she lost her ability to speak. It felt like we were witnessing her death cell by cell, neuron by neuron, tiny blood clots killing activity in her brain. When we had to remind her to swallow, I asked hospice to stop feeding her. Despite orders, nursing home staff got her up and rolled her to the breakfast table the next morning. Orders were written, but staff ignored them. I talked with the hospice social worker.

Mom’s face always looked anguished when we Face-timed with my sister’s assistance. Although she shook her head when we asked her if she had pain. But was she in emotional pain? My sisters and I thought so, so I asked the hospice nurse about scheduled morphine. The on-call doctor said no and instead they gave her Tylenol four times a day in her rectum! I asked the hospice nurse again the next day. She was reluctant to ask the regular doctor. I texted the doctor. With schedule morphine, mom seemed comfortable, sleeping most of the time, but the kitchen was required to bring in fluids and ice cream. She couldn’t swallow. There wasn’t a federal or state regulation; was this a Catholic rule?

Eventually the end came. One of my sisters was with her, holding mom’s hand and stroking her cheek.

My sisters and I were relieved. Finally, she was at peace. But what a journey. My doctor-sister and I had to advocate every step of the way for four years. What do people do without an advocate who understands health care? What about people without family at all?

After Mom’s death, there was no communication from the nursing home about the deadline for clearing out her room. Mom died Friday afternoon at 3. The next day a sister went in with cousins to empty closets and dressers and decide what furniture went where. That weekend, I sent an email to the facility contacts I had trying to determine expectations. No response. We had a mover scheduled for Thursday. On Tuesday, I received a call from the CEO who offered no condolences, but told me we would be charged the room rate ($500/day) starting the day before (Monday) until her furniture was out, or we could pay them to have it moved out.

Needless to say, I was appalled. Where is the compassion? Why do we run health care like a business? Why do we deal with death so poorly?

Alas, my physician role and health care power of attorney responsibilities with my mother are ending. Perhaps, I can take the time to mourn her loss as a daughter. Our culture and health care profession need to do a better job of helping people die with respect and dignity.