By Marie MacWhyte

As a child, I rarely saw my grandmother Fleda, or my great-grandmother Hazel, because they lived far away.  When I was finally able to move closer, Fleda was 73 and Hazel was 89.

Hazel had advanced dementia, and was in her eighth year in a nursing home.  When Fleda and I visited, we would search among the wheelchairs of gnarled, deformed elders in the activity room, until we found Hazel, hunched over, drool accumulating on her chest, and sometimes smelling of urine. Like actresses on a stage, we would maintain an upbeat mood, attempting to communicate and entertain. Hazel, who had no clue who we were, sometimes allowed us to hold her hand or comb her unruly hair. Other times, she’d be spitting mad and having us around accelerated her foul mood. If we persisted, she clawed or pinched, with her agitation accelerating with a rising string of incoherent, foul sounding utterances.

It wasn’t long before I realized that Fleda was also showing signs of dementia. Her sentences and stories didn’t always make sense, and her frustration at forgetting things was evident. One day her explanation about a bruised lip didn’t make sense to me, but soon I understood. My grandfather raised his hand in exasperation at her inability to answer a simple question, and I watched Fleda shrink in fear, humiliation and sadness in her eyes.

One day Fleda confided that unless she took decisive action, she would end up in the nursing home alongside Hazel. I knew what she said was true and I felt her despair. She told me not to worry, that she had a plan which gave me hope, until I realized that she was talking about ending her life. This was too much for my 18-year-old brain to handle. “I can’t talk about this,” I told her, and refused to engage whenever she broached the subject. It seems cruel to me now, that when she reached out for me, I wasn’t there in the way she needed me.

When Fleda disappeared, having left wig, wedding ring, and address book on the kitchen table, I felt a sense of foreboding. My grandfather was beside himself and spent long hours searching the streets. Three days later, the Portland police called. Fleda’s body had been found in the Willamette River some 70 miles downstream. She had jumped rather than have dementia steal her life.

Fast forward to 2016. Death with Dignity was legal in Washington State where my mother was living. At 89, her mind was clear, but her body was deteriorating rapidly. I was working as a Hospice nurse and my mother and I frequently talked about death and dying and the choices available to people during the last chapter of their lives. As is often the case with the elderly, a series of unfortunate health issues gradually stole my mother’s desire to live. A stroke left her unable to function independently, and advancing osteoporosis kept her in constant pain from repeated compression fractures in her spine. One day she told me she had had a wonderful life, but her life wasn’t wonderful anymore and she was ready to die. She wanted to use Washington’s Death with Dignity law, but without a 6-month prognosis, she didn’t qualify. We presented this dilemma to her physician who proposed a plan. My mother had a large lump in her breast, which she had already decided to ignore. “What am I going to do at my age, have surgery and go through chemotherapy?” she had chuckled when presented with options. But now the lump gave her an out. “Have a biopsy,” her physician suggested. “It’s most likely malignant, and then we’ll have the diagnosis which will qualify you for the law.”

My mother was disappointed, as she was ready to die then, not in a few weeks. But she agreed to go through the necessary steps in order to qualify. By the time she had everything in order, a month had passed, she was exhausted with living and looking forward to everlasting peace. She circled the day on her calendar, the day she would receive her prescription for life-ending medication. “I want my family here with me,” she said with certainty. “I’ll say my goodbyes, take the medication, and then leave you all.”

The day arrived, and we sat in the exam room waiting for her physician. “I’m so tired of living. I’m so tired of pain. I want to show other elders that they don’t have to live like this,” she said, and she smiled. But another hurdle arose when the doctor entered the room, avoiding eye contact. “Your other daughter called me last night,” he began, “She said you are depressed and suicidal and therefore do not qualify for the law. I’m sorry, I’m not getting into the middle of a family disagreement.” My sister, well-meaning but out of touch with our mother’s wishes, had sabotaged her ability to qualify for Washington’s death with dignity law.

My mother was devastated, but her resolve was strong and from that moment forward, she refused food and liquids which qualified her for Hospice, but it was another three days before they delivered the morphine needed to alleviate my mother’s suffering which, by that point, was profound. My mother looked up from her bed and said, “Oh good, you brought me death with dignity. Give it to me now.” She cried when I broke the news that it was not the lethal medication that was delivered, but morphine instead.

Over the next few days, I cared for my mother tenderly as she faded away, not unlike the care I gave my own babies when they came into the world. But instead of providing nourishing milk every two hours, I administered morphine to keep my mother shrouded in an opioid cloud, trying to balance awareness and comfort during her last days. It was a difficult and tiring time for both of us, but eventually death took her, and she achieved the peace she longed for.   

Three generations of women before me attempted to orchestrate the best death that they could. Hazel trusted the nursing home to keep her safe during her last stage of life. If she had known the depth of her decline and its duration, I wonder if she would still have chosen that route. Fleda chose suicide instead and died by drowning. And then my mother, who tried to die with dignity, only to be thwarted, was left suffering until the end.

Now my turn to exit life is approaching. I hope, when it becomes clear I am finished with this life, that I will have humane options to choose from. My strategy has been to impress upon all my children that I value quality over quantity of life, and when the quality is gone, I want to die peacefully, painlessly and surrounded by my loved ones. I’ve talked about this so much, none of them have any doubts. I hope I can count on them to make sure this comes to pass.

At a minimum, Death with Dignity should be a legal choice for those who qualify for it and all states should be working to legalize it. But more important is end of life planning. Before illness strikes, let your family members know what your end-of-life wishes are. Death can be a difficult subject, but it’s an important one and only by talking about it often will it become acceptable conversation.