Kathleen Fitzgerald: The Women’s Group of Live Oak Friends Meeting has been gathering monthly for decades. We have shared and listened deeply through childbirth, parenting, partnering, unpartnering, changing jobs, changing everything, emptying nests, retiring, and finding our way with special regard to our testimonies.
One night, I was struck halfway through our meeting by a common theme I heard emerging. We were all dealing with death and dying – aging parents, sick siblings, friends on the verge of despair, unmarked boxes in Mom’s attic. I thought of my own previous four years, what it had taken to steward my mother through her dementia, her death, and the affairs she left behind. Then I realized I had not put my own affairs entirely in order and would need help to do so. When I asked my Friends if any of them would like to help me form another group – one to address death and dying – every hand in the room went up.
Terrill Keeler: We have discovered that most of us are not afraid of death. We are afraid – or concerned – about matters related to death. We fear losing our mental capabilities, living with chronic pain, being unprepared for sudden death, not having our affairs in order, leaving our children with years of accumulated stuff . . .
Kathleen Fitzgerald: At our first meeting, after some silent worship, we brainstormed the ideas and questions we wanted to address; we batted around ideas on how to structure our meetings; and we realized we needed a name for our group. We wanted a name that would inspire and pull us forward, something to help us take charge and seize the idea of death. Linda said, “Oh, like Carpe Mortem!” We all howled with laughter, and in June 2019, Carpe Mortem was born.
Katharine Richman: After Carpe Mortem began meeting, someone close to me asked, “Isn’t it depressing, talking about your own death, month after month?”
I replied that it really wasn’t, that we spend a lot of time laughing as we contemplated how to prepare for the day we leave this earth, discussing everything from sorting out our stuff, to burial wishes, to memorials, to saying our goodbyes. Not everything provoked hilarity, of course, but we have found plenty of moments of sharing laughter (as well as tears) during this process.
Most importantly, this has been a way of drawing closer to the others in the group as we prepare for our final journeys. Also during this time, we have shared the experiences of losing parents, of dealing with serious illness, of contemplating necessary related tasks.
Emelyn Buskirk: It has been a wonderful time of sharing with my sisters in Live Oak Meeting. Also, I’ve completed some basic tasks. I now have a will.
Wendy Elder: Many of us in Carpe Mortem have been inspired to preserve family histories for our children and grandchildren. We realize that before we die, it is up to us to serve as links in the chains connecting past family members to future ones. This task is often fascinating and fun, but it also entails long hours of tedious work. It has helped immensely to have our Carpe Mortem sisters cheer us on when we scan and label old photographs, compile family photo albums, finish quilts started by our grandmothers, organize old letters, and write memoirs and family histories. I think some of us might never have gotten around to doing these things if Carpe Mortem hadn’t inspired us, energized us, and applauded us every step of the way.
Linda McCue: The parts that have been most helpful for me are: being accountable to people for getting my papers in order, clearing out clutter, and communicating with my husband and my children about important end-of-life matters. It is also profoundly comforting to be able to talk and share with like-minded women about subjects that are taboo in many circles.
I have never feared death, but I have resisted getting ready for it. This group has helped me begin the process of getting ready. I hope it will help my survivors at the time of my death.
Myrna Herrera Ezequiel: Being the only consistently attending member who is foreign born and raised, my views of life have sometimes differed from the rest of the group, and learning from their experiences has been a tremendous growing opportunity to me. Now, to be able to come full circle and talk about, and even prepare for, the last milestone, death, seems very natural. My intellectual and emotional curiosity was stimulated by the prospect of learning beyond my fear of losing loved ones, which happened to me when my sister died, and six months later, when my mother followed.
My mom never prepared for her death. Perhaps she viewed preparing as a “call” to death and of course, pain was implied. I wish there had been more practical preparation on her part. Maybe if she had had a group like Carpe Mortem, there would have been more solutions than problems left behind, and the conversation would have included more laughter and celebration of life.
Gretchen Stone: In my career as a family doctor, I found that it can be painful for the doctor, as well as the patient, to see a person no longer able to do the things they used to do. You try to savor whatever joys are available. Often, those joys require the gift of time, not feeling rushed. So rather than offering one more medication which might tweak blood pressure into a more favorable range – but also might lower it to the point where an older person gets dizzy and falls – a doctor might opt instead to hear about the person’s ups and downs. They walk out feeling better.
Palliative care, in particular, can bring great joy. So many people seem to think that signing up for palliative care or hospice means you are giving up. On the contrary. By choosing palliative care, you are gazing realistically at life, seeing that our bodies can’t be repaired indefinitely. You seek whatever makes life most pleasurable. If that means casting aside dietary restrictions and gorging on pizza with your best friend – go for it!
Ironically – or maybe not – a focus on pleasure and cutting back on medication is a choice that can extend life. One study of patients diagnosed with metastatic small cell lung cancer found that the ones who entered palliative care early lived about 1/3 longer than those who opted for aggressive cancer treatment. Patients in palliative care can prioritize: maybe yes, they might want chemotherapy; or maybe no, if the next treatment gives you a 10% chance of living another month, but makes you so nauseated that the month is barely worth living. . . at that point, other choices might be more appealing.
People choosing palliative care often feel they have more control over the life that remains to them. They don’t need to sign up for exhausting, life-sapping regimens just because the doctor offers them. They are less troubled by depression. Significantly, their medical costs decrease while their life span increases. They are less likely to die in hospital, undergoing uncomfortable, expensive treatments that separate them from their loved ones just when they most want to be together.
Ann Baier: The best time to develop a disaster preparedness plan is while all is calm, before any emergency begins. Living in a region prone to wildfire, we keep flashlights and radios handy, map our escape routes, and decide on out-of-state contacts before local communications are lost.
Similarly, the best time to prepare to die is while we are healthy and of sound mind. My preparations minimize the legal, financial, and emotional burdens I will leave for others when I cross Life’s finish line. Putting my affairs in order can give me peace of mind.
Exactly when death is not imminent is the time I can work with a clear mind, when I can ground my decisions in carefully considered values. Discussing disability or death can be awkward with someone suffering from a recent accident, a sudden illness, a brain tumor, or memory loss. It is preferable to prepare for death while I can reason clearly and speak for myself. No matter my age or health status, life and death are unpredictable. This moment right now is a good moment to consider my values, articulate my decision-making criteria, and write down my wishes for my care under various possible circumstances. Such practical preparations for death fall into two overlapping categories: medical and legal.
My Mom used to joke, “None of us is going to get out of here alive!” She took those words to heart and put things down in writing long before any thoughts of her physical frailty or mental incompetence were anything more than merely hypothetical. Due to my physical proximity, I was first in line as her health care power of attorney. As such, I filed two forms on her behalf with her health care system – an Advance Health Care Directive (AHCD) and a Physician Orders for Life-Sustaining Treatment (POLST). I also made sure the rest of my family had copies of these forms and understood the implications. All this paperwork was in place and ready when my mother needed it, years later. Her passing was peaceful and consistent with her values, thanks to her preparations. She was able to die as simply as she had lived, with modest use of finite medical resources.
Advance Health Care Directive forms are easy to find online, and many health care systems provide templates. If you have not yet written your AHCD, do it today! In addition, you should fill out a Physician Orders for Life-Sustaining Treatment right away. The POSLT will help you identify your surrogate decision-maker as well as the treatments you would want in unknown medical emergencies. A POLST form does not replace an AHCD – they work together and save costly confusion for family members and care providers when life hangs in the balance.
The second category of practical preparations concerns legal matters like the identification of heirs and trustees. First, a disclaimer: What I say here is based on my own experience; it is not legal advice. I encourage everyone to seek legal services appropriate to their own situations.
Making legal arrangements, appropriate to one’s family composition and property, is a worthy investment of time and money. Get reliable legal advice! Key documents often include a Will, a General Durable Power of Attorney, and a Living or Revocable Trust. A Trust complements the Will, and allows property to be transferred to beneficiaries without the expense and delay of probate court proceedings.
A Trust names beneficiaries and a Successor and/or Co-Trustees. A “Successor” is authorized to act on behalf of the primary Trustee only if and when the primary Trustee is declared physically or mentally incapable by a medical professional. A “Co-Trustee” has the legal authority to take care of primary Trustee’s affairs sooner, as I did with my mom when her energy waned, her eyesight faded, and her hand grew increasingly unsteady over the course of several years. Because life provides no guarantees about a person’s longevity or the order of death (one of my mom’s children died before she did), it is good to name more than one Co-Trustee, and the order in which they would serve.
Making necessary legal arrangements does not mean giving up on life or losing hope. It’s simply a good idea. It’s hard to think straight when a wildfire is heading your way. Similarly, it’s easier to set one’s affairs in order without a tragedy looming. Put things in writing, give copies to all your close family members, and to the extent that you are able, have conversations with them to ensure that all of them are clear about your wishes and on board with supporting your decisions.
Natalie Luján-Silva: The Carpe Mortem group has been a safe place to say, “I’m scared of dying.” Our monthly group meeting has been a cushion for my feelings. I have been inspired by the meetings to live my best life now; there is no time to waste. I have had the privilege of being present with people as they departed this world. Sharing these experiences and listening to the other members share, both have helped me remember that time is precious and have brought me comfort. ~~~
The text above was extracted from a much more detailed collection of writings found here: https://westernfriend.org/media/carpe-mortem.
The members of Carpe Mortem who contributed to this article are: Ann Baier, Emelyn Buskirk, Wendy Elder, Myrna Herrera Ezequiel, Kathleen Fitzgerald, Terrill Keeler, Natalie Luján-Silva, Linda McCue, Katharine Richman, and Gretchen Stone.
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