“When the nurses told Else that Poul could die soon, she stayed with him all the time at the nursing home, sleeping on a mattress next to his bed,” said Sofie Mathiassen, the recipient of this year’s Bob and Diane Fund grant.
Sofie Mathiassen’s grandparents — Poul and Else — always kept a journal, jotting down in a sentence or two — sometimes more — the small joys of each of their days together. Eight years ago, Poul was diagnosed with dementia and Parkinson’s disease, and, for the past four years, their granddaughter has been photographing their daily lives in Denmark, creating a record of Poul’s last moments on earth.
The work has won the Bob and Diane Fund grant, a cash prize dedicated to raising awareness through photography of the medical crisis around Alzheimer’s and dementia.
“I have always been very close with my grandparents and spent a lot of time with them throughout my childhood,” Mathiassen said. “So, when my grandfather began to get sicker I started photographing him. I wanted to keep him as I knew him, and I could see him fading away from me and from my grandmother and the rest of the family.”
Poul, 82, at the dinner table with his wife, Else.Else, 83, at the dinner table with her husband, Poul.
Mathiassen’s photos show the bond between Poul and Else as one’s dementia becomes overwhelming and the other works to hold onto what’s slowly disappearing.
“Their story is just one example of what many families are going through,” Mathiassen said. “I hope that people see the love before they see the disease.”
“Photographing your family takes a certain risk and vulnerability,” said Getty Images photographer Chip Somodevilla, one of this year’s judges. “And Sofie has shared her world with us in an intimate and beautiful way. Denmark may have a sophisticated welfare system — but dementia still has the same impact.”
Mathiassen will receive $5,000 to publish her images in a photo book in 2020, said Gina Martin, the fund’s founder and executive director, said.
Poul and Else Mathiassen in their house in Skanderborg, Denmark.Dinnertime at Poul’s nursing home.A mural at Poul’s nursing home.One week after Poul died, Else celebrated her 84th birthday. She lives alone in their house and plans to stay there.
If you knew what day you would die, what would you do? Would you be more ambitious and try to do everything you didn’t get to do or wanted to do? Would we fall apart and die at the hands of ourselves? Would we say goodbye to our loved ones? Would you welcome death with open arms? Would you hold a funeral for yourself? Would you try to cheat death? Would you keep living life the same way until you died? Would you try to leave a legacy? To build something that will outlive you? But most importantly, would you live?
Yes, I know, we’re young, scrappy, and hungry and not throwing away our shots (I couldn’t resist these Hamilton references), so why would we even be thinking about death and legacies at this age, doing so you’d have to be obsessed with death or a goth. But here I am, an otherwise healthy twenty-one-year-old college senior talking about death and dying when most people would think, “well she hasn’t really lived yet so what does she know”. And they would be right, I know nothing about death and while I’ve had people in my life die, I don’t know really know how it feels to die. Because you don’t feel death and you don’t feel like you’re dying until you’re actually dying; you feel grief, sorrow, and despair and while that’s painful, that’s not dying. But it’s my job to provide a perspective into topics we don’t like to talk about and most often don’t even think about.
Our mortality is much closer than we think it would be, we can die tomorrow and never live to old age like the generations before us. Many things can kill us today and in the next decades. To put things into perspective, according to scientists that by the year 2050, human civilization would collapse if nothing is done about battling climate change. With rising world temperatures from carbon emissions and greenhouse gases, globally we would have more frequent and intense heatwaves, crop failures, more severe extreme weather storms like hurricanes, and massive plant and animal extinction with habitat destruction and pollution caused by rising sea levels and human destruction.
In the United States, unlike the rest of the world, life expectancy rates have dropped steadily since 2015 due to drug deaths and an increase in suicide rates. While yes, the Baby Boomer generation is getting older and they account for a significant number of deaths, it’s an increase in deaths by individuals between the ages of 24 to 44 that are the most pressing and made the most impact on the calculations of life expectancy. The 10 leading causes of death: heart disease, cancer, unintentional injuries, chronic lower respiratory diseases, stroke, Alzheimer’s disease, diabetes, influenza and pneumonia, kidney disease, and suicide. Suicide and unintentional injuries have seen an increase in numbers, both are highly preventable deaths. The leading causes of death for those aged 1-24 years are mainly caused by external causes, not chronic health conditions. Unintentional injuries accounted for 38% of all deaths, followed by 13% for homicides, and 12% for suicides.
I hate to be a downer by talking about death and the real plausible reasons we how might die. But it’s eye-opening, isn’t it? Our lifelong struggle to learn how to really live is being held hostage by two notions: our mortality and the sheer dread and denial we have towards it. Dying is easy, living is harder. I can’t offer you a plan on how to live but I can plant that seed in your mind of why you need to live. While yes you could die of the aforementioned things above and I’m sorry to scare you into thinking you might die sooner rather than later, but that’s my whole point: to scare you into living.
I think it’s safe to say that we’re all just temporary fixtures in the universe, here for a set time but not made for forever. I want us all to live, to stop worrying that it will be the end of the world if you fail that exam, the dread of not getting into that graduate school program, the anxiety of possibly not having a job after college, to stop playing it safe and go out and experience life because you don’t know when it ends or when your friends will no longer be by your side. Stop thinking about the future in terms of the goals you’ve set for yourself because that’s not what most people will remember of you and what you’ll remember of your life. You’re running out of time so stop waiting for it, for that future you aren’t even sure you’ll have.
Think about the fun stories you’ll never get to tell because you weren’t brave enough to go experience it, the many versions of yourself that you won’t become because you’ve played it safe with life, the many places you’ll never go to, and the people you’ll never meet who will make an impact in your life and maybe even fall in love with. So, go. Go take that class you want to take, apply for that job you’re not qualified for, take that spontaneous trip to New Orleans, get that tattoo, try those foods you were too scared to try, make some regrets and learn from them, and meet new people who will change your life forever. Go make some memories.
Death may be the ultimate stressful moment in our lives. Just thinking about the end is enough to cause your heart to beat faster. And while some levels of depression and anxiety are inevitable, those feelings need not overwhelm the death experience for you or your family. In fact, it’s possible to die well — to experience a sense of wellbeing as you approach the end. You can leave this life with a feeling of closure and a sense of contentment. That’s the difference between completing your life and merely ending it.
But stress disrupts well-being. It distracts you from prioritizing love, family, and dignity. Worry and fear interrupt precious time with family and friends. That’s no one’s idea of a good death. And while it’s easy to think you’ll skip this stressful step and go suddenly from a heart attack or stroke, the reality is the majority of us will need end-of-life care. So, put some thought and preparation into your passing now. Reducing stress will make it easier for you to say goodbye, and for your loved ones to let go. Here are six ways you can make dying the experience you want, rather than the experience you get.
Finalize Your Burial Arrangements
Preparing your burial arrangements lowers stress in several ways. For one, it puts you in control. Eliminate worry by outlining the type of service you want, the manner of internment, and the organ donation process. Burial arrangements also relieve financial stress from your family and friends. Carrying out your last wishes doesn’t have to be a financial burden for your family. So, find the best final expense insurance policy to cover costs. Or get a pre-paid funeral plan that kicks in after you’re gone. You’ll feel less stress knowing everything is taken care of.
Finally, by tending to your funeral arrangements yourself, your loved ones can focus more on spending time with you in your last day. And their grieving will be easier when they’re not weighed down with administrative tasks. Mourners often feel guilty devoting time to such business matters after a loved one dies.
Create a Living Will
If you become incapacitated before death, someone will have to make decisions for you. That’s a heavy responsibility to place on a family member or friend who may only have a rough idea of your wishes. But without a health care power of attorney (or proxy) to speak for you, you may end up being kept on life support longer than you’d prefer, or the opposite. An advanced directive or “living will” is a legal document that lists specific medical treatments you wish to receive and those you don’t. The directive takes the decision-making burden off your family’s shoulder.
To get started, have the end-of-life conversation with one or two people you would want to serve as your proxies. And also talk with your doctor so that everyone is on the same page. Living will forms vary by state. So, download your state’s advanced directive form to get started. If you don’t have the resources to create a living will, other forms of non-legal directives can work as some form of “proof” for your wishes. For example, write a letter to a family member expressing your wishes. Or record audio/video explaining what you want. While these aren’t formally recognized legal documents, they work better than nothing at all.
Make Amends
One thing that makes dying harder is knowing you’re leaving behind unsettled issues, old hurts, and past grudges. When possible, make amends with those you’ve hurt or who’ve hurt you. Now is the time for unburdening yourself and being honest with those you love. While you can leave those hurt feelings behind, your loved ones will carry them after you’re gone. And many will regret they didn’t say something when they had the chance. Knowing this will make leaving this life more stressful for you.
So, don’t put off making amends. Request a private audience with a loved one or wait for the right moment to broach the subject. Be honest and take responsibility for your part in the situation. Refer to the past event/issues that caused the rift, but don’t relive it all over again. And don’t bring up their responsibility; just explain your regrets and apologize. They will reciprocate. Think of this less as a discussion and more as a confession. So, listen more than you talk. The goal of making amends is to replace hurt and anger with forgiveness and love.
Revisit the Past
For those facing imminent death, the bulk of the conversation often focuses on medical needs, medications, or staff visits. While these are immediate needs are necessary, don’t forget the past. Revisiting old memories help us replace the current situation with one of our choosing — at least for a moment. Rather than a form of denial of death, recalling memories is an affirmation of our lives and our effect on others. For friends and family, recounting a past event is a handy way to show how a dying loved one impacted their lives. It’s often difficult for the dying person or loved one to find the right words in these moments. Words of condolence or regret can seem empty. But a pleasant or meaningful story can be a beautiful expression of our gratitude.
Recalling old memories is also a stimulating activity for Alzheimer’s patients. It fosters emotional connections and reduces anxiety. Use family albums, music, videos, or heirlooms to help prompt memories. Encourage family and friends who can’t travel or live too far away to send a short letter or audio recording. And don’t avoid humor. Include funny moments, old jokes, or humorous anecdotes. It may feel awkward at first, but laughter is nature’s way of helping us relieve stress and anxiety while connecting us.
Use Music Therapy
Studies suggest that music therapy has emotional and physical benefits for hospice and palliative care patients. Researchers found that patients who listened to music reported “less pain, anxiety … as well as an increase in feelings of well-being afterward.” Music therapy has a profound effect on people with cognitive and mental decline. The rhythmic nature of music requires little mental processing and helps stimulate memories. Choose music that your loved one enjoys, tunes from their childhood era, or a neutral New Age track. But don’t overstimulate; that can create stress. Take note of the other noises in the room. When mixed with many different sounds, even soothing music at a low volume to create a cacophony of stress.
Ask for Pain Medication When You Need It
Palliative care is about making patients feel as comfortable as possible until the end. And pain management and medication are part of this process. Unlike other vital signs, hospitals and staff can’t measure your pain. You have to help them know when you’re feeling discomfort. Still, some patients forego their pain meds because they want to stay awake to see their friends and family. Others see pain medication as “bad” substances or only for the weak or needy. But these are myths. Pain meds are integral to the palliative care process. And there’s no reason to forego pain medications that’s more important their your comfort. You may think you’re being strong for your family, but having to watch you fight intense discomfort will only increase their stress levels. Ask for pain medication when you need it.
These six tips will increase well-being and reduce stress when you’re nearing the end of your life. But once you’re faced with death, it’s important to know when it’s time to let go. Too often, we hold on too long out of a primal urge to keep going or fear of leaving our loved ones. Death is a natural process we all share. Take comfort in that immutable fact. Let your loved ones know you’re ready to go. They, too, will hold on to you, fearing that letting you go is “giving up.” This creates enormous amounts of stress. When it’s time, reassure them that — while you’re not ready to die — you have accepted it.
I had a miscarriage this summer — and it broke me in more ways than I could have imagined. At my nine-week appointment, I discovered, to my complete surprise, that I was experiencing a “missed abortion” – a pregnancy loss in which I’d had no miscarriage symptoms whatsoever. Not only did I have to make medical decisions while in shock, but I also struggled intensely to make sense of what I was feeling emotionally and spiritually.
With help, I recognized that I was deep in the throes of grief. Jewish tradition provides an incredible structure for mourners to grieve the death of a loved one. Yet nothing is prescribed for my miscarriage grief. When grieving, it can be harder to make any decision, large or small. I craved a prescription for what to do; that might have left me with fewer heart-wrenching decisions.
Nonetheless, I found healing and comfort in adapting Jewish rituals and traditions.
In honor of October being Pregnancy and Infant Loss Awareness Month, here are some of the lessons I learned:
Jewish tradition teaches that we are not obligated to mourn a miscarriage or even the death of a baby who lives less than 30 days. In fact, we are taught that up through 40 days after conception (this would be just under 8 weeks pregnant in today’s terms, since counting begins at the woman’s last period, not at conception), the embryo is considered to be merely water (Yevamot 69b). This does not describe the emotional reality of many pregnant women or couples. Even in those early weeks, the connection to the embryo can be incredibly deep. And yet I recognize that mourning a miscarriage is not the same as mourning the death of a child or an adult. I didn’t lose a baby that I’d held. I didn’t even lose a fetus. I lost an embryo (the transition from embryo to fetus happens in the 11th week), but that embryo was supposed to make me a mother. That embryo was supposed to grow into a fetus. I would have delivered a baby, named and held my child. That embryo had a due date. I had a timeframe sketched out already for when I would start looking at daycare options.
The specific grief of a miscarriage is different but still very real. In order to cope with my grief, I needed to mourn. The ancient rabbis likely believed that having a prescribed set of mourning rituals for a miscarriage may have been a burden, since families could experience multiple miscarriages.
Today, too, families may experience one or more miscarriages. While miscarriage rates may or may not have changed since rabbinic times, many things have changed: birth control has led to less pregnancies; at-home pregnancy tests help women find out that they are pregnant much earlier than even several decades ago; because of ultrasound technology, pregnancies feel much more “real” when a future parent sees an embryo or a flickering heartbeat at a fairly early stage. All of this leads to pregnant people (and their partners, if applicable) who are more likely to experience grief when losing a pregnancy. The Perinatal Grief Scale was developed in 1988 to help clinicians diagnose and care for their patients’ grief. What if certain rituals of mourning were opportunities to grieve, instead of a potentially weighty obligation placed on the family? Michael I. Norton and Francesca Gino, faculty at Harvard Business School, conducted experiments to measure the impact of mourning rituals. They determined that rituals are incredibly effective in reducing grief because they allow mourners to regain a sense of control, at a time when it feels like they have lost any semblance of control of their world. For me, rituals like burial and mikveh also helped me find a sense of validity in my grief. I needed concrete physical acts that also stemmed from Jewish tradition to help me recognize that my loss was real and mattered, both in my own eyes, and perhaps more importantly, in the eyes of Jewish tradition.
Rituals may be traditionally absent, but Jewish rituals, modified from other contexts, are emerging. Not everyone marks time and life cycle through Jewish liturgy and ritual, but I do. Each person will find what is meaningful for them in coping with a miscarriage. In the first few days, I felt compelled to have a way to externalize my pain. When an immediate relative dies, the mourner tears their clothes or wears a kriyah ribbon. I chose to let my nail polish chip away naturally over the coming weeks instead of taking it off my fingernails once it started to chip. I looked unkempt and that felt appropriate. People should know that something was awry. I whispered kaddish once while tears streamed down my face – it felt both rebellious and cathartic. I realized that I needed a burial of sorts, echoing how we address a loved one who has died. With the help of Sinai Memorial Chapel, I arranged to bury my embryo, unmarked, near newly planted trees in a cemetery. I chose not to be present for it, but it was comforting to know that it was returned to the earth. I also visited the site a few weeks later with a friend and buried a piece of paper on which I’d written my due date, and some other dates that would no longer be shared with this baby – I had envisioned a baby costume for this Purim, and had imagined that this Passover would be my first as a parent. None of this was halachically prescribed or encouraged but these acts helped me say goodbye. Some new Jewish rituals for mourning a miscarriage suggest planting a sapling. But for me, this didn’t seem fitting. A sapling would grow into a larger plant, but my baby-that-should-have-been was never going to grow. While I yearned to one day be able to grow a different pregnancy, that wasn’t what I wanted out of this ritual. I needed a ritual that was solely about loss before I could begin to think about new life again.
The cultural norm is to keep the pregnancy quiet through the first semester — but that’s not always helpful. Miscarriages are common, but it feels incredibly lonely.* The Jewish community has a superstitious relationship to the evil eye: if you tell others about your blessing (of pregnancy), the evil eye might overhear and change your luck. Soon after the first trimester, you start to show, and the secret is out, so the concern about the evil eye lessens a bit then. When I miscarried, only a small group of people knew about my pregnancy. How could my tight-knit Jewish community support me through this trauma when only a handful of people knew that I was pregnant? We have been trained to not publicly reveal pregnancies until we are past the first trimester, and yet that first trimester is when 75-80% of miscarriages occur. And they happen more than we realize. 20-30% of pregnancies end in a miscarriage, and the statistics only increase as women continue to have children into their late 30s, 40s, and beyond. One the one hand, the more people you tell about your pregnancy, the more people you feel like you need to ‘un-tell’ should you, God forbid, miscarry. On the other hand, those people are the ones who can hold you – feed you, check in on you, and let you fall apart with them. When I did tell people who didn’t know that I had been pregnant, I had to tell them three secrets at once: (a) I decided to try to become a parent (b) I had been elated that I got pregnant (c) I am now crushed because I had a miscarriage and now I need you to be gentle with me. Sharing pregnancy news – whether about a new pregnancy or a pregnancy loss – is an incredibly vulnerable act. Don’t be too afraid of letting people know before you cross the first-trimester finish line, if those people would not only celebrate with you but also support you through your fears or even a loss. Let’s change the stigma around revealing a pregnancy while it is still uncertain. The uncertainty doesn’t go away entirely until you hold a baby in your arms.
A miscarriage is related to, but not identical to, infertility. Trying to get pregnant again may feel intensely different than before. For weeks, I couldn’t shake the feeling that I’d done something to cause this, even though I was reassured again and again that running too much or taking a redeye or that sip of coffee would not cause me to miscarry. People told me that it was a good sign that I was able to get pregnant. While there might be medical truth to that, as much as I wanted reassurance that I would eventually, God willing, be able to carry a pregnancy to term, I need to mourn this particular loss – this particular baby-to-be that I carried and would never become a baby that I could hold in my arms. I went to the mikveh before I tried again, so that I could acknowledge that my body, which was supposed to create life, had in fact held a sort of death. I needed to immerse and wash that away in order to be ready for new life again.
A miscarriage is not (always) the same as being sick. My mental and spiritual health were compromised, but thankfully, in my particular situation, I was never worried about my physical well-being. This may not be true for other women, but I did not want to benschgomel (a call-and-response moment during an aliyah to the Torah, often said when you survive a potentially life-threatening experience) both because of this gratitude for my health throughout and because I was not sure that I wanted to acknowledge my miscarriage quite so publicly. I associate gomel with surviving in the face of fear, but I had not been afraid. Instead, I had been devastatingly sad.
When in shock and grief, decisions are exponentially harder. Prescribed rituals or other things to do or not to do can help you move through that. When an immediate family member dies, Jewish tradition prescribes very specific and concrete changes in order to grieve the life lost. I have been working on compiling resources for rabbinic colleagues to help their communities mourn miscarriages, perinatal losses, and neonatal deaths, but there isn’t a definitive set of do’s and don’ts. In the midst of what can be a deeply chaotic and heart-wrenching experience, rabbis can help by developing a concrete set of ways to mourn. Had I been steered toward taking several days to fully grieve in a way that parallels shiva, I believe that I would have healed more easily.
Grieving my pregnancy loss was incredibly challenging. And yet, a foundation in traditional Jewish mourning rituals eventually helped me find ways to adapt them that felt honest and appropriate for miscarriage. As I moved through each day, I also found myself experiencing deep, profound gratitude for the people in my life who showed up for me over and over again.
May we find ways to cushion the pain of pregnancy losses with community, ritual, and tradition.
In a research study, 84 per cent of residents and families who received a pamphlet about end-of-life choices felt encouraged to think about their future care.
I would like to tell you an all-too-familiar story. It begins with a long-term care home resident, Laura, who has multiple chronic conditions and gets an infection that doesn’t get any better.
Her health has been declining for months, but no one has talked to her about her preferences for end-of-life care. In the absence of that knowledge, she is sent to the hospital where she undergoes stressful tests.
The story ends with Laura dying in the hospital, alone and frightened. Her family is traumatized, and so are the staff who have cared for her over the past year.
It’s a simple fact that 100 per cent of us will die. Conversations about our future health care and what’s important to us — called advance care planning — have shown distinct benefits.
How do we change those statistics and give our older people the care they want — and deserve? My team’s research has focused on answering that question over the past six years.
We recently developed a series of pamphlets and distributed them in long-term care homes to try to get the conversation started.
The pamphlets were disease-specific (for example, focusing on dementia), and included information about life-limiting illnesses, what to expect and tips for talking about wishes for the future.
In our study, 84 per cent of residents and families who received a pamphlet felt encouraged to think about their future care and 70 per cent felt clearer about what to talk about.
Encouragingly, the 56 per cent of residents and families who did have conversations after receiving a pamphlet expressed great relief. A typical response from families was: “It makes it easier for me right now because now I don’t have to guess.”
Informational resources such as our pamphlets can be a great first step in helping all parties gain clarity on what to be thinking and talking about. But because residents and families tend to protect one another, staff need to take more active roles in supporting such conversations.
We have an aging population, and thanks to technological advances, more of us are living longer with frailty and chronic conditions. We need to find ways to communicate what’s important to us, so that we receive the care that’s right for us.
I would like to be able to tell you a different story. It begins with a care home resident, Sam, who gets an infection and is not getting better, even with antibiotics.
Sam has been living with multiple chronic conditions for some time and his family knew frequent infections could be a sign that the end of life was near. The family also knew that he wanted to die in the long-term care home and not in a hospital — because they had talked about this when he was healthier and could communicate his desires.
Sam dies, but with dignity and in peace and, most importantly, in keeping with his own wishes.
End-of-life doula Nathalie Bonafé leads a death cafe on the last Tuesday of every month at Koffee? in New Haven.
By Cara McDonough
The term “death doula,” which a lot of people use when describing Nathalie Bonafé, makes her job sound edgy. But the proper name for what Bonafé and her company A Gentler Parting do is “end-of-life doula.” And while the job does involve helping individuals and their caregivers face the existential mysteries of the great unknown, end-of-life doulas spend a lot of time facilitating the practical duties that surround the event.
These doulas — who, like birth doulas, are focused on ushering individuals from one phase of life to the next — aren’t as common as the hospice and palliative care workers we associate with end-of-life care. However, they hope their work, approaching death with compassion but also a pragmatic business sensibility, will become more mainstream.
In fact, Bonafé and her colleagues refer to what they do as “a movement.” In addition to their primary responsibilities, they also conduct free workshops, seminars and discussions known as “Death Cafes” to get people talking about death more often, making it a less taboo topic.
Bonafé, previously a molecular biologist, was trained at the New York City-based International Doulagivers Institute. While end-of-life doulas do not provide medical care, she and other doulas offer a wide range of services: Bonafé can help a client do anything from write a living will to downsize his or her home. After a client has passed, she can help create “legacy projects” and facilitates grief management. Rates vary greatly from client to client, she says (most end-of-life doulas seem to average several hundred dollars for typical services).
While the actual client might be the individual facing death, an end-of-life doula can prove invaluable to that person’s family, health care team and legal counsel, too, Bonafé says. The doula serves as an unaffiliated advocate during an “emotionally charged” period, she says, providing crucial support and planning.
Ingrid Harrison of Affordable Personal Services & Pet Care is a former veterinary technician and New Haven County-based end-of-life doula who specializes in keeping clients with their pets.
“I have seen firsthand with my clients, family members and friends that if there is no plan when you become debilitated or pass away, it can have a disastrous outcome,” she says. “Having an end-of-life doula makes for the peaceful passing that everyone deserves.”
As for the Death Cafes? Again, sounds edgy, although the concept is anything but. Bonafé holds them on the last Tuesday of every month at New Haven-based coffee shop Koffee?, describing the gathering in flyers as “a safe, respectful space where we can share our beliefs, curiosity, fears, and stories — and maybe gain a little insight into our mortality.”
End-of-life doula Nathalie Bonafe helps families and individuals deal with the death process, from grief management and emotional support to document organization.
There are usually about 10 participants at each meeting, of different ages and from diverse cultural backgrounds, ethnicities and religious beliefs, she says. One young man joined a recent group after he’d finished a date at the coffee shop because he had recently attended his first funeral and wanted to share thoughts.
People hear about the events through word of mouth, social media or the official Death Cafe website deathcafe.com, which includes events all over the world; there are over 8,800 Death Cafes held in 65 countries, according to the site.
“People leave the meetings with big smiles and a heart full of joy to have been able to share their stories,” Bonafé says. “As the moderator, I ensure that the space is a place of respect and lack of judgment.”
Dawn Whelan operates My Last Gift in Staffordville. Her services, in addition to many like those provided by fellow end-of-life doulas, also include destroying paperwork “not intended for public view” after a client has died.
She says that death is the “one thing we all have in common” and is honored to serve her clients and the community through her work and the free monthly webinar she’s created — DASH — allowing individuals to discuss death openly on a regular basis.
Whether at “cafes” or online, discussing death can help dissuade fearfulness, says Sharon McCullough, an end-of-life doula based in Southington. Her company, Sharon Cares, also offers free discussions on death at a local wellness center.
“People live as if they will recover from all diseases and incidents and are angered by anyone who even starts to talk about the idea that treatment is not curative. This leaves many families stricken with anger when a loved one dies,” she says. “As a doula, I am able to be a witness and support through the struggles of this very natural part of life.”
Dr. Kathleen Leinhardt, a physician who treated one of Bonafé’s clients, saw firsthand how the emotional and logistical support offered — providing food, music and companionship, while also helping organizing home health care and hospice services — changed her patient’s experience. “Nathalie truly took on the role of a surrogate daughter,” she says. “End-of-life doulas can be an invaluable help to those who lack family or whose family lives far away. More than that, though, they can serve as a guide to both patient and family through the emotional and logistical process of dying.”
Nathalie Bonafé shares what she’s learned as an end-of-life doula.
Everyone has a story.
When I spend time with people toward the end of their lives, I am always amazed by the stories they share with me: what/who really mattered to them, where they grew up, their relationships, places they called home, visited, loved, their daily activities, their passions, their beliefs. I find that many express their grace and humanity alongside their vulnerability.
Everyone wants validation.
People want to be seen, heard and understood. No matter what religion, beliefs, education, socio-economic status, mental or physical abilities people have, everyone I encounter is receptive to a smile, compliments or being listened to. People at the end of life want to be witnessed and remembered as the young and strong and able people they used to be. They also want to be remembered as loved, decent, loving human beings, without judgment.
People tend to die the same way they chose to live.
People have a lot more control over the way they die than one can imagine. For instance, a very private person will prefer to spend the very last instants alone or in the arms of a very trusted person; a person who was a natural caregiver will die making sure that the most sensitive/fragile people in their lives are sheltered from shock and pain. Likewise, those who understand the benefits of planning a little, and learn the notion of “letting go” during their lives, tend to find acceptance and inner peace more easily than most.
Listening is more powerful than speaking.
Compassion, understanding, forgiveness and love can be expressed very simply. Similar to the way a frightened child will find incredible comfort and reassurance in your open arms, people in grief, whether facing their own mortality or that of a loved one, want a safe, intimate space to shroud their pain and fears. Learning to build and offer such a space to others in need of such reassurance has been one of the most sacred, humbling and profound discoveries of my life.
It’s worth living to learn.
Life is hard. Every day, we get disappointed, we either feel hurt, or we hurt, we misunderstand, we get angry, we win sometimes, yet we fail a lot more often than we win. Still, we learn throughout it all. Think about it this way: since it is scientifically proven that novel experiences give us a rush of dopamine, the “feel good” neurotransmitter, we can turn the pain and changes in life into growth and love and more rushes of dopamine. Intense moments of joy and excitement are rare. Pay attention and enjoy them; they are precious.
Can a shift in the way we treat death and dying improve our lives while we’re still here?
A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death
These days, for the most part, the concept of death is consumed by health care and medicine.
However, as humans we need to view death as more than just a medical event. It takes into account our psychology, spirituality, philosophy, social worlds, and personal lives.
This reconsideration should also apply to the way we treat people who are dying. Life is in the senses, not just our physical capabilities.
BJ Miller: Health care, medicine in our country is a giant, colossal thing. And it’s got a ton of momentum. And medicine has become– the domain of death is more or less ruled these days by health care. In times past, it’s been the church, or the family was the sort of center of all this.
These days, it’s mostly medicine. But what’s really important in all this is that we people, we humans, we patients, loved ones, we need to kind of take back the subject on some level– that dying is not just a medical event. It’s way bigger than that. It is all-encompassing. It’s where everything comes to account– our psychology, our philosophy, our spirituality, our social world, our intrapersonal lives– all of it. The medical piece is a little itty bitty piece. It just gets too much attention.
So I’ll just think about the emotions for a second. For one thing, to remind ourselves– for me, the difference between emotion and a thought is you can control your thoughts. You can’t really control your emotions. Emotions are much more slippery. They’re going to have their way with you. So you ignore them at your own peril.
That’s one thing to get across. But I also say that to let us off the hook. The way you’re feeling, on some level, isn’t your fault. And one of the things I see that happens a lot around this subject– again, we’ve talked about how one can be made to feel ashamed to be sick, ashamed to be dying, like we’re failing, somehow.
I want to make sure that we all understand, there are certain things that are way beyond our control. And that means– that may be hard to swallow, but it also means we’re off the hook. It’s not my fault, the way I feel. I shouldn’t have to hate myself or be embarrassed about it. So let’s set some ground rules.
And there’s this other layer that is particularly vexing, which is how others start treating you. And it’s very common, under the banner of sanctity or wanting to protect someone, to– I watch people, they stop telling jokes. Maybe they think it’s sort of sacrilegious to try to be funny around someone who’s sick. Or maybe they don’t talk about their own joys that they happen to have in their day while their colleague is meanwhile miserable with a fever or something. They don’t feel like they should talk about their own joys. Or I don’t know, whatever it is– pick anything.
But one of the things that ends up happening is we end up accidentally making life even harder for each other by keeping the truth of the situation at bay. All right? So these are the ways we die before we have to die. We die before we have to die because no one tells jokes to us anymore because they don’t think we’re going to want to laugh, or that sounds perverse.
Or maybe our partner stops the intimacy. Physical intimacy might dry up, or sexuality. The idea that a disabled person can be sexual, that’s still a novel concept. Just look at most exam rooms in a doctor’s office or in a hospital. Most of them are not even wheelchair-accessible.
My mother uses a wheelchair. They used to just assume she wasn’t having sex, so they wouldn’t offer her a pap smear.
And so one of the things you want to avoid if you plan for your death is you want to– ideally, we come to our death without piles and piles of regret. So when I’m working with patients, especially upstream of their death, I’m always encouraging them to feel things, enjoy the body they have while they have it, appreciate their body while they have it, because it’s someday going to go, and you’re going to miss it.
So touch is just profound. It’s elemental. It is, even if you think about, I think, the scourge of dementia, for example– and a lot of us are terrified of this eventuality. We’re going to lose our minds. Yeah. And it’s hard. And that is a very difficult prospect. And I’m also pretty convinced that there’s a life on the far side of our intellect.
And for me, that life is in the senses. As long as I can feel something, I’m interested in being alive. I’m even more interested in that than a thought.
