A Little Bit About Me
Where does my obsession with death and dying come from?
It all started with my first nursing job in 1996*. My initial task that early morning was to take vitals on 33 patients at the nursing home. I walked into room 234 and my first patient was sitting up in bed, dead. I was shocked and sick to my stomach. I had never seen a dead person during nursing school and stopped in my tracks. Oh my god, did I kill her? Where is her family? Why am I the first person to know about this? Do I take vitals? Is she really dead?
I ran over to my charge nurse and told her my findings. She shrugged and said, “Oh, she must have stroked out or something. I will call the family.” I was horrified by her nonchalance, her shrugged shoulders, her lack of response.
I quit that job after three weeks and started at an AIDs hospice home. This lovely place was a sharp contrast to the nursing home and frankly, nursing school itself. In nursing school, you are taught to run at high speed, performing technical clinical tasks and skills while charting and calculating med titrations. At the AIDS hospice, I was to perform clinical tasks and administer medications, but of equal importance was being present with my patients. I was taught to have conversations about what the patient wanted and needed to die peacefully. Did they want their family there? Their friends? Their community? Did they want soap operas playing on the TV, Bach on the radio, or silence? When there was no family present, the staff and volunteers would take turns sitting quietly at the bedside, holding space for the patient's final days.
After a year of chemo and a steady decline in her health, my mom signed up for hospice.
My mom, my dad, and my son Jack.
Not long after I started at the home, my mom was diagnosed with lung cancer. I remember her pragmatically looking at the statistics for chemo: “Five year survival rate? That's pretty good.” I was holding my baby and felt a jolt of possibly living without my mother for the first time in my life. We went to chemo appointments together, shopped for wigs when her hair began to fall out, and researched alternative medicine as she dutifully drank shark cartilage milkshakes. I continued to feel the anticipatory grief, knowing she was just buying time.
After a year of chemo and a steady decline in her health and quality of life, she signed up for hospice. They were helpful, but they showed up infrequently throughout the week. The caregiving burden fell on my dad, my siblings, and me. Although I was a nurse, I was still pretty green, and let me tell you, it is like night and day when you are taking care of your own mother rather than a patient. Bathing her, administering morphine, checking the oxygen tanks, blending food, crushing meds, transferring her from the commode to the bed all took on a new heaviness. We could call hospice with questions, but I felt an enormous amount of responsibility for her physical comfort and emotional well-being.
After my mom died, I returned to my old life — and my new, sucky life without my mom. I continued nursing and raising kids while grieving her death. In 2006, I started to work at this beautiful hospice home which is when I felt like I had landed professionally. This hospice home valued compassionate presence, offered excellent medical care, and had an unlimited supply of donated scones.
This hospice home valued compassionate presence, offered excellent medical care, and had an unlimited supply of dontaed scones.
For the next 14 years, I worked at the in-patient unit, in the home setting, and behind the scenes of hospice. I absorbed as much as I could from my compassionate co-workers and became certified in hospice and palliative care. My experienced mentors taught me about the subtleties of dying and the way to hold compassionate space, how to alleviate pain and shortness of breath, how to treat a body with reverence after death, and how to offer rituals to elevate death to a sacred event.
What I found during my years working in hospice is that every patient and family has similar questions about the dying process: what to look for, how to best support them, what to say, and when will the morphine start working. I envisioned a beautiful book at their bedside that would answer all of their questions about caring for the dying and holding space for their loved one’s death. I reflected on all of my experiences and the hundreds of deaths I was present for and wrote “Some Light at the End” in response to these questions.
But I know there is so much more than hospice that can help patients die in peace.
Death happens to everyone, and our culture* has not exactly embraced this.
When I was pregnant with my first child, I was tentative but excited. I immediately purchased the book “What to Expect When You're Expecting” and diligently followed their advice. I made a birth plan, took folic acid, ate more leafy greens, and told people I stopped drinking coffee (but didn’t).
Though my husband had no interest in reading a book, he listened to me tell him about the pre-planning stages and he agreed to go to the prenatal classes and prenatal appointments. We made a birth plan together that avoided drugs and epidural. We engaged all of my friends and had baby showers, and they organized a meal drop off calendar for after the birth. I felt supported, loved, and that I could indeed do this birth thing.
I went into labor and alerted friends and family who lit candles in their home for us; my mother-in-law scheduled her flight to visit. The birthing suite was luxuriously huge with a comfortable window seat/bed for my husband. I threw the birth plan away at two centimeters dilated and requested drugs and an epidural. The nurses and doctor quietly ran around doing all of the medical things they needed to do while my husband and I breathed together. My husband was in the room 100% of the time, loving me.
Our son Jack arrived early in the morning, and friends arrived later that day with gifts, flowers, and well wishes. And when we went home, my mother-in-law arrived, the meals came, more friends and family stopped by and brought groceries and tiny little shoes for Jack.
More friends and family stopped by and brought groceries and tiny little shoes for Jack.
It is amazing to have such a huge event in your life and feel so supported and loved by friends and family. Everyone seemed to just know what to do.
I dream that our culture** and local communities can support death in the same way we support an expectant mother. In an ideal world, it might look a little like this.
The dying patient is supported to make a plan and as they are closer to dying, loved ones know what the patient wants and what is important to them.
Friends and family then mobilize, offering help with laundry, shopping, and meals.
Family and friends offer well wishes and prayers as they light candles in their home during the process’ culmination.
Airlines offer cheap flights to visit a dying patient (a girl can dream).
Hospitals have death suites that are big enough for all the extended family and friends to come visit. It's ok to die in the hospital if the patient prefers this, and it's paid for by insurance. Family and friends can be in the room 100% of the time, loving them.
Ideally, it would be a priority for our communities to have gorgeous hospice homes sprinkled throughout the city, near the hospitals and near homes that are also paid for by insurance and filled with staff that are expertly trained in end-of-life care.
I have a dream that patients can continue to choose to live and die in their home if they prefer. And insurance will pay for 24/7 care if needed.
These options will include the possibility to die outside in nature under the sun, the stars, or a sexy maple tree..
If they want, patients should be able to die outside under a big sexy maple tree.
And when the patient dies, I dream that if they want this, family and friends are gathered around the bedside whispering prayers, blessings, and a pause for this holy event.
And after the patient dies, there will be plenty of time for rituals and offerings in whatever way is meaningful to the patient.
And family can get plenty of time off to grieve and get their head back on their shoulders — like I did when I had my babies — and begin work when their heart is a little less shattered.
This is my obsession with death and dying. I have seen many many beautiful deaths, and like my first nursing home resident, I have seen many hard and difficult deaths. You do not forget those. I am often frustrated with insurance companies and health care systems, because I think we can do this better. Hospice is a great support, but often, it is not enough. I want to educate people about the death and dying process so that it can be a normalized and celebrated event in our culture in which the patient has proper care, excellent medical, spiritual, and emotional support, is loved and taken care of and comfortable and dies in a state of peace.
I plan to do this work until I die.
Blessings.
*Writer’s note: Except for my mom’s story, because of privacy laws, the subject of this story is not an actual patient, but a story that includes a combination of many many patients and scenarios over the years.
**When I say culture, I am referring to the institutionalized cultural norms that often drive the way end-of-life care happens, specifically Medicare guidelines for hospice, health care systems, and insurance companies. Of course this is not the case everywhere and there are many actual cultures and religions that embrace and value death and dying.