What I Learned From My Mom’s Approach to Death

She complained of incontinence and other physical indignities. She was fearful of falling and ending up in a hospital where she would lose her autonomy to make decisions.

By this past December she was spending much of the day in her chair, tiny paper reminders scattered around the apartment in her small, cramped handwriting. “Get up; Lee is coming today!” was one I found by the door of her bedroom. This was always who my mother was, an inveterate list maker, but the notes seemed less casual reminders and more about the fear of forgetting entirely.

Did we miss red flags we should have seen? She was so competent during my visits at hiding things. We had wonderful conversations that covered books, memories and philosophy or history. Was she taking her medication?

Was she eating? She had stopped using the stove and then the microwave. We would learn later that she had largely stopped eating, a willful act. But was it also because she was no longer able to organize herself around the daily task of feeding herself?

She’d suffered from tinnitus for years and could no longer enjoy the music she loved. Now her beloved books sat largely untouched; reading had become difficult. Still, this was so different from the slow dance of losing a parent to Alzheimer’s. This felt rapid and confusing, as if we were barely staying one step ahead of her descent.

In the late fall we investigated the possibility of getting people to check in on her. A wellness check, they called it. She had too many life skills to qualify for aides under her long-term care plan, and she would have fought the help vigorously. Independence and privacy were paramount. But the stress of caregiving, running over to deliver an item or write a check, began to bear down on the daughter who lived closest. 

In addition to the signs on the fridge that pointed to her DNR, she had written explicit directions that she did not want her grandkids to see her if she wasn’t cognitively aware or she was hooked up to tubes. “That is not how I want them to remember me,” she wrote. Thankfully, many of them did get to say goodbye, and she rose to the occasion like the dignified lady she was.

A rapid decline

Everything collided at the holidays. The careful facade she had constructed began to unwind. There was rotting food in the refrigerator; it was now clear she’d lost the ability to put a meal together.

One of her aides would later tell us she found soiled clothes stuffed around the apartment and under the bed. What massive guilt we felt! Still, the three of us were comforted by the knowledge that this is not uncommon.

Many parents go to the ends of the earth to mask their decline and maintain appearances for their children, people assured us. Especially with a mother, the instinct is to nurture and protect to the end. No parent wants to feel as if they are the child.

But careful preparation is no match for the unpredictability of death. Most of us don’t get to choose our time. The hospice intake was scheduled on Christmas Eve. We scrambled plans and drove to Boston, praying that we could help her die in her own home, the one thing she’d asked us to help her accomplish. My mother had taken independent living as far as she could.

“I’m ready to go,” she told us repeatedly. “I don’t want to live anymore.” Her day-to-day life experience no longer fit her definition of living.

The end came fast, hastened by her determination to leave this world. As timid as she was about so many aspects of life, I never sensed she was afraid to die. She was a woman of strong faith, and she leaned into that hard. It gave her comfort when thinking about the end.

Hospice was incredible. Compassionate, dedicated people guided us, patiently explaining her breath and heartbeat, describing what signs to look for when death was near. We all sat, visited. Various grandchildren came to say goodbye, shocked a bit at the rapid escalation of her decline, the weight loss and papery paleness of her skin.

Facing the end of life is not for the faint of heart. There were so many emotions, the ping-ponging of grief and relief, the exhaustion and the doing, the sitting and watching for signs of pain or changes in the rhythm of her breathing. Was the hearing really the last thing to go? As my sister and I tidied the room, sorted through some of her things, we remembered, laughed and cried.

I thought about the trajectory of her life, all those years lived well, the hard work of childrearing and housekeeping, the aches and pains, the frustrations and rewards of being caregiver to my dad until she physically couldn’t continue. The realization that being a mother includes the constant worry about your children, which has no end, only a middle.

I was not prepared when some of the health care aides canceled shifts upon discovering they’d have to administer medications like morphine as part of hospice. I assumed that this conflicted with their personal beliefs about intervening in God’s plan, but it was jarring at first. I felt judged. This wasn’t their parent. We were fulfilling my mother’s wishes, and I couldn’t imagine the alternative, to sit and watch someone you love in such extreme mental pain and anxiety, day after day, until they died. 

It was also interesting to watch the choices the three of us made about how we wanted to show up at the very end. There was absolutely no judgment.

One sister, who was with my mother the day that hospice arrived, was at peace with that goodbye. She did not feel compelled to be there at the end. This surprised her most of all, as she and I had sat together when my father died, grateful for the ability to witness that inexplicably mystical final moment of someone’s last breath.

My other sister sat by the bed with me for four days, before I left to go home to New York, planning to return. When my mother’s final moment came, life reminded us that you cannot script death.

I didn’t make it back to the bedside in time. I’d wanted so badly to be holding her hand, telling her she was loved as she took her last breath. That failure on my part undid me for a while. I hadn’t gotten the ending I’d wanted, and I tortured myself with the thought that I’d failed, as a daughter, to see her through.

Throughout the next week, my mother swirled in my thoughts, existing in a series of full-stop photographs, like a slide show in my head. There she was as a college graduate in a pink suit.

Now the image of my engaged parents washing a car, my mom in a demure, two-piece bathing suit. She appeared next as a new mother in 1960, holding me with joy and love.

On and on the images went. It struck me that I’d never again hear my mother’s voice on the other end of the line. I’d been saving her voicemails for the last six months. I could listen to them when I was ready.

Over the past few years, my mother had begun to end every phone call by saying, “Be good to yourself.” I try to hold her words in my head in the moments when I feel like reaching for the phone. There is no preparation for being a motherless child.

My mother did so many things right as she prepared for this stage of life. She was able to have the conversations around death in an open manner.