How my Mom died at home

My mother hated talking about death. But hospice helped her die on her terms.

My sisters and I used to joke about hauling my mother off to a nursing home one day when she was old and decrepit. Her favorite response was, “I’ll meet you at the door with a shotgun!”

She came from a line of long-lived women. Her grandmother died at the ridiculous age of 107, and her mother just barely missed the centenarian mark by dying at 99. So it was surreal when my Mom was diagnosed with Stage 4 pancreatic cancer last year. Wait…what? She had just turned 80. This was definitely not supposed to happen.

My family was not the type that put everything out on the table. Death was basically an off-limits discussion (nothing like my colleague Laura’s family). We knew there were a couple of wills tucked away in some mysterious lawyer’s office somewhere, and that was supposed to be sufficient. Otherwise, we were on a need-to-know basis.

Even when my mother was painfully thin and obviously dying it seemed distasteful to mention it – a breach of unspoken etiquette.

This dynamic no doubt contributed to my developing a fondness for Mexican Dia de los Muertos (Day of the Dead) folk art as a twenty-something. I loved how the culture confronted death head on, even celebrated it as a natural (and utterly unavoidable) part of our temporary lives on earth. It was refreshing…rebellious even – I once read that death had replaced sex as the number one taboo topic in the US. But also, acknowledging death just made the whole thing feel less scary.

I no longer have 97 clay skeletons covering every surface in my kitchen (they just got too trendy), but I still want to make it to Oaxaca for the annual celebration one day.

Oddly, my mother once talked about donating her body to science (probably after reading that Patricia Cornwell book about the Body Farm), but it freaked my Dad out enough that she never brought it up again. So she was inconsistent, like everyone else.

She was a voracious reader and also loved this book written by a funeral director. She told me about one section where a family planned an elaborate funeral including the cadillac of caskets and the release of hundreds of balloons (or something) for their mother though she had specifically requested a pine box and a bare bones service. The author declared that this over the top display was just fine, because what happened after a person’s death was really about comforting the survivors and “the dead don’t care.”

I found this infuriating and I remember haranguing her about it. I felt strongly that human burials should cause as little environmental impact as possible and I didn't like the idea of my own wishes being dismissed for someone else's preferences one bit. (I like the Bios Urn, which turns your ashes into the oxygen producing tree of your choice – pretty cool).

When I was eight, my fourth grade class visited a real live funeral home on a field trip (seriously). As we stood in the basement embalming room breathing in the oppressive scent of formaldehyde, the technician described in harrowing detail how bodies were prepared and preserved. As you might imagine, this odd educational experience left a distinct impression. After that I wanted nothing to do with traditional burial methods. 

And now I know firsthand that people grieving a massive loss are in no position to make rational decisions.

The author did have a point though. When a person you love dies, it sucks. There is no way to maneuver around that fact. It’s disorienting, crushing, and overwhelming. The bereaved might seem okay but are operating in a bewildered murky haze, maybe for a long time. Furnishing a map for your family or whoever you leave behind to help them deal with the aftermath of your death is an act of profound kindness.

During the last months of her life, my mother preferred to spend her time on our 70s striped velvet couch eating Pepperidge Farm coconut cake, watching the Rachel Maddow show and texting her former public radio colleagues with the ancient, obsolete cell phone that never left her side. Her friends came from near and far, some she had known as long as 68 years, to hang out in the living room, drink chardonnay, laugh, and get worked up over the latest political news.

She had had one chemotherapy treatment (that unfortunately took most of her hair with it) but saw no reason to continue once she realized it couldn’t cure the cancer. Somehow the oncologist didn’t get that across when he first explained her prognosis. At least not in terms she understood (and she had a Master's Degree in English).

On the 70s velvet couch with a dear friend

A hospice provider came to check on her every Monday through Friday, while home health workers covered the weekend, and an RN stopped in once a week. They went through her medications and dosages, made sure she was reasonably comfortable, helped her bathe if she would let them and answered all of our anxious questions. How do we get her to lie on her side so she won't get a bedsore? How much should she be eating? She says she's not in pain - is that even possible? Eventually they brought my Mom a hydraulic hospital bed when it became more difficult for her to get up.

I think she found all this attention helpful if slightly annoying. I was just grateful there were people around who knew what to do.

One night my Mom became entangled in her oxygen tube and began to panic. She wouldn’t let me pull it over her head. When I called the on-call nurse (after 11 pm and during an Iowa blizzard) I half expected to hear exasperation and a rushed description of how I should solve the problem myself. That didn’t happen. The nurse was in her car and on the way as soon as she knew we needed her.

End-of-life is a huge topic in health care right now. Most people say they would choose to die like doctors do, at home and without exhausting and expensive interventions that may or may not prolong the inevitable. But more of us need to let our doctors and families know what we want and don't want.

My mother died peacefully in a dusty pink bedroom she called the rose room, surrounded by her treasured letters, drawers full of yellowed clippings, and numerous shelves filled with Christmas and cat book collections.

Her cell phone stopped working the next day.

Soon after I happened to hear a This American Life episode focusing on hospice care. If you haven’t had any personal experience with the job these people do, the story is a touching and authentic introduction. If you have had personal experience with it, you’ll be nodding (and sniffling, or just downright bawling like I was) in recognition at the soothing, unflappable and expert way hospice staff interact with the dying and their families.

The service (we called it a Chardonnay at the celebration“memorial celebration”) was held in a rustic nature center building nestled into the woods. It included music, a poem called "Wild Geese," stories about my Mom - like the time she rescued a distressed blue crab from a swimming pool, and the time she started a used bookshop to raise funds for the local library - wine, food, and wine. Also wine.

My mother was a highly empathetic person who taught me to be active and involved in issues I care about. One of my most vivid memories is watching her march down Pennsylvania Avenue in front of the White House during a giant political demonstration we were participating in, pumping her fists in the air and shouting with the crowd. She was full of conviction and passion and joy and was having the best time ever. That one moment captured the essence of who she was.

Because hospice care allowed her to stay in her own outdated but much beloved home, she managed to hang onto that vibrant quality almost up until the end.


Memorial photo by Jenni Chung photography.