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I’m a Solo Ager and I’ve Hired a Death Doula Seeking support navigating the complexities of dying

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Above image credit: "I've always been a strong-willed person — some would say a control freak. I am determined not to die on someone else's terms," writes Erica Manfred. (Photo | Getty)
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4 minute read

I’m 80, have stage 4 lung cancer and COPD (chronic obstructive pulmonary disease) and have been in and out of the hospital during the past year. I live alone. I’m not sure when I’m going to die, but things aren’t looking so good. As a journalist by training, when in doubt, I consult an expert. So, I’ve hired Kristin, a death doula, to help me navigate the complexities of death and dying.

I found Kristin — where else — on the internet. She’s a former hospice social worker who goes to doctor’s appointments with me and serves as my health care proxy and end of life therapist. She supports me when it comes to medical interventions I don’t want. Once I can’t do the things I love, like swimming, eating out with friends, book clubs, movies and discussion groups, she’ll help me find a way to die. She swears she will make sure I don’t die in a hospital.

She’s a former hospice social worker who goes to doctor’s appointments with me and serves as my health care proxy and end of life therapist.

Since I’m a journalist, I asked her why she chose such a seemingly grim profession. She said, “I became a death doula for the purely selfish reason that being part of a beautiful dying experience is a joy. To help a family reunite, to relieve the fear of dying, to watch a dying person find a peaceful acceptance, and even a curious wonder of the next place beyond this earthly life is an amazing spiritual experience for me as well.”  

I’ve always been a strong-willed person — some would say a control freak. I am determined not to die on someone else’s terms. My recent hospital stay — which resembled a horror movie complete with the noise of bedlam, sadistic nurses, nonsensical rules and no way to escape — convinced me of that. So did the death of my closest friend, Lonnie.

The Wake-up Call of a Friend’s Death

Lonnie was 79 when she died last year. She had been diagnosed with metastatic cancer but was determined to fight it as long as possible, a noble goal. She did pretty well for 5 years, going through every grueling chemo treatment uncomplainingly, but the disease finally took over. She was in a lot of pain but refused to give up.

When I suggested she go into hospice, she was horrified. “But that means I’m going to die. I don’t want to die.” I should have had the guts to say, “But you are going to die, we all are.”

I just couldn’t.

I will never forget our chilling final phone call where Lonnie said to me, in an agonized, panicky voice I’d never heard from her before, “Erica, this is a nightmare, an absolute nightmare.” I felt so helpless. I couldn’t imagine what she was going through.

Overcoming denial of death takes even more courage than fighting fruitlessly to stay alive. 

Lonnie belied the whole “valiantly fighting cancer” trope. Why don’t we admire people who valiantly decide to stop fighting cancer? Overcoming denial of death takes even more courage than fighting fruitlessly to stay alive. 

Her death was my wake-up call. I determined I was not going to follow her path.

No Longer Beating the Odds

Not that I was a paragon of preparation for death. I didn’t have an advance directive or health care proxy or even a last will and testament until recently. When I got lung cancer at 76, I took the latest “targeted therapy” until the side effects became unbearable. Then I got radiation. I managed to keep cancer at bay for four years. I was in denial about the deadliness of my diagnosis. I was sure I would beat the odds. 

Until I didn’t.

Before antibiotics they used to call pneumonia “the old man’s friend” because it killed you quickly and painlessly. I was gasping for breath when a friend called 911. I was hospitalized with pneumonia caused by a staph infection, pumped full of antibiotics and kept alive.

No one asked me if I wanted treatment, but when you’re gasping for breath, you don’t say no to oxygen. I came out of the hospital with my right lung filled with malignant fluid, barely able to breathe, and had to have yet another surgery.

The unconscious assumption is that if you keep moving, maybe you won’t die.

At this point my death doula is helping me decide whether it’s worth it to take more chemo to fend off cancer for a few more years, simultaneously battling COPD, or just live my best life as long as possible. The verdict isn’t in yet.

Denial of death is a lifestyle in America. Studies show that that people over 75, no matter their physical health, consider themselves healthy as long as they’re still social and active. Poor physical functioning plays a less important role in their health self-estimate, even though the majority of older adults have two or more chronic illnesses.

The unconscious assumption is that if you keep moving, maybe you won’t die. My friends keep relentlessly busy — traveling the world, taking classes, exercising, volunteering, going to museums, concerts and other events. Yes, they have ailments that they kvetch about, but it doesn’t stop them. This is the American way of aging — keep going at all costs — preferably to an exotic location. 

Dying is something that’s supposed to happen to someone else, not you. I understand the impulse to be “positive” and celebrate octogenarians like Jane Fonda or Nancy Pelosi. I envy people who lead active lives into their 90s then die in their sleep or after a short illness, like Stephen Sondheim or Betty White.   

Few Role Models for Dying

But how about the rest of us who are destined to die slow and painful deaths partly abetted by the miracles of modern medicine? We all have horror stories. Many of us saw our parents’ lives painfully and artificially prolonged. Those horror stories persist because the medical machine will grind on unless someone stops it. 

I will try to face my death without fear, but hey, I’m human and it’s scary stuff — especially since I’m not sure about the afterlife. 

What happens when you can’t be active and social anymore and poor physical functioning takes over? How do you “think positive” when facing the grim reaper? Who do you turn to then?

We have few role models for dying. Some celebrities who lived in the limelight die in the dark. Barbara Walters retreated from public life in her 80s due to ill health and just died at 93. I wish I knew what she was doing for the past 10 years. Walters was a courageous woman, maybe she faced those years with grace and courage. We’ll never know.

I will try to face my death without fear, but hey, I’m human and it’s scary stuff — especially since I’m not sure about the afterlife. 

I used to admire Dylan Thomas’ fierceness about not succumbing to death. But only a young man could have written “rage, rage against the dying of the light.” Now that I’m old, I prefer to “go gentle into that good night.”

This article first appeared on Next Avenue, a nonprofit news site created by Twin Cities PBS. Erica Manfred is a freelance writer and the author of “He’s History, You’re Not; Surviving Divorce After 40.”

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