In the Company of Death

Within seconds of opening my mouth to tell others what I do for a living, I can guarantee I will receive one of four reactions. These responses are clear indications of where people are on the “fear meter”. Inevitably, for most, it’s shock and dismay that arises. Ears will prick up, eyebrows raise, and eyes widen. There are blank stares and mouths agape. Occasionally involuntary gasps of air or sound are released, but often I am met with a deafening silence. Absolute crickets. Unable to fully grasp what I've said, I can only guess what images occupy their brain at that moment.

 The second reaction is what I called “the look.” The one filled with fear and trepidation with a tinge of repulsion sprinkled in. Judging by the physical reactions, you would think they had just inhaled the worst smell on earth. That somehow, a foul odour had invaded our conversational space. You know when you see it. The wrinkled-up nose and forehead lines that crease as the face contorts. Eyes squint and close shut. Heads turn away from me and jerk in a downward motion with a quick snap that can’t look away quickly enough. The body shutters as if a cold Artic breeze had hit them. Fingers form into tight balled-up fists that are drawn close to the chest. Truth be told, I would probably get the same physical reactions if I drew a large King Cobra from a burlap bag and dangled it in front of their faces. In both cases, the feedback is similar and fear-based. After I’ve witnessed the physical reactions to my words and it has sunk in a bit, THE questions are raised: “How could you do that?” or “Isn’t THAT the most depressing job on earth? “Well, no; no, it’s not,” I reply.

          Facing these reactions repeatedly, I have wondered what I might classify as the prize winner in the most depressing job category. What work would I consider as being soul-sucking or too challenging to bring home a paycheck? What would test my boundaries? Cleaning up crime scenes? Being armed with a stun gun in a slaughterhouse? Maybe being an animal shelter caregiver or social worker who sees unbearable abuse and despicable crimes against the most vulnerable. We all have tipping points about what we find depressing, or no-go areas for ourselves. Jobs that we deem as being unacceptable or against the norm. Ones that might be subject to immense physical stress, mental anguish, or dangerous working conditions. Many have a social stigma attached which is where, I believe, my line of work gets a bad rap. People don’t really know what it involves, and their imaginations run wild.

           My response to those who label my job as being depressing is to say that I find it incredibly uplifting. I’m a Death Doula. Otherwise known as an end-of-life doula, death midwife, or death worker… however you care to term it, it doesn’t matter. Some prefer a title that sounds a bit more refined or respectable. Death is a harsh word. It stirs up images of corpses, caskets, crematories, cemeteries, funeral homes, embalming… If it coincides with Halloween, it’s fine, but if we talk about a process that every living thing experiences, it suddenly becomes taboo to discuss or think about.

           My role is to offer loving, compassionate, non-medical care to those with a life-limiting prognosis/terminal illness and to support their family members through a difficult time. I sit with the dying, help them with end-of-life wishes, and make sure they are comfortable. I assist with keeping vigil, offer respite to caregivers who need a break, help put affairs in order, assist the dying with writing their own obituary – if so desired, help create legacy projects, dictate letters, initiate Facetime calls, or make recordings for loved ones that can’t be nearby. I may help family members understand the stages of dying, the physical signs and the common occurrences such as "terminal agitation". For some, discussions on funeral or burial arrangements take place. Most importantly I provide care for a terminally ill person’s physical, emotional, and possibly- spiritual needs during the death process and assist the family throughout and after the death has occurred.

Each person is different with what they want or need as they are dying. But in each case, it is an honour and privilege to witness the transition from life into death. The dying process in home hospice can be a beautiful one – full of meaning. In the final months, weeks, and days, it is clear to see what takes precedence in life and what can fall by the wayside. Status and money play no part. No one will ever look back at their life and regret not putting in more overtime hours at a job. Sitting at the bedside quietly discussing impending death matters creates the opportunity to have meaningful conversations. Clients will share their fears of dying and leaving loved ones behind. Others have accepted their fate, do not fear death, and feel comforted by their spiritual beliefs that a greater place awaits them. In every hospice visit, I learn more about the death and dying process and in doing so, have learned how to truly live a full and abundant life for myself. My work as a doula can be a calm and uplifting presence in what is often a chaotic, emotional, and frightening time. It not only benefits those I work for, but I reap the rewards as well.

            Some consider the title Death Doula to be a bit “woo woo” - unconventional or spiritual nonsense, which also prompts some eye rolls. It is presumed I carry silk pouches of crystals and will initiate a drum circle or bring some other alternative approach to the table. I hate to disappoint those with this impression, but no. I don’t. This is the third type of response that I receive. The word “doula” seems too new age for a lot of people. They don’t know what to make of it. I like to introduce them to the concept by saying that there are birth doulas who help with the birth process and can bring support to the home in the early days, and there are death doulas who offer services on the other end of life – in much the same manner. Both involve situations that can be frightening, messy, or chaotic experiences. Both can be made calm and easier with the support of a doula.

            The fourth and final reaction from my line of work is the one I most welcome. These people are "my tribe". Their reactions and interest stem from having a natural curiosity about the human condition. One that goes against what society dictates by making us believe that talking about death is weird, creepy, or unnatural.

These are the people who realize that many of us are likely to one day be caregivers to a parent, spouse, or child, and/or will need a caregiver ourselves, at the end of life. They may have experienced hospice and witnessed the human elements of dignity, respect, and empathy that are shown to the dying which brings them, and those around them, peace. These are the people who have come to terms with their own mortality and understand how mentally, emotionally, and physically taxing it can be looking after (or being) someone who is near the end of life. They see value in being supported with kindness and compassion in the home, surrounded with familiarity and comfort rather than in a sterile, clinical environment looked after by strangers.

          I’m not surprised by the reactions I get. Society has an unwritten rule that death and dying are not to be discussed openly. It’s taboo and human beings, especially in the western hemisphere, are good at tiptoeing around the act of death by avoiding it at all costs. The assumption is that it will happen to “someone else” or, I’m far too young to think about it, let alone prepare for it. Somewhere along the way, people started believing the notion that if you talk about it, you will somehow bring it upon yourself before it’s meant to happen. If that were the case with everything in life, I’d be talking about winning the lottery every week. Rest assured, It doesn’t happen like that. Just as talking about sex doesn’t make you pregnant, talking about death won’t cause you to die before your time either. Yes, it will happen one day, but you won’t have a black hooded, scythe-carrying Grim Reaper knocking on your door if you choose to educate yourself, talk about your end-of-life plans with your family and accept death as part of the life cycle.

          We all die. There is no escaping it. Every one of us will be touched and affected by someone close to us dying. Others will mourn our passing. Wouldn’t it be easier to accept and deal with death if we spoke about it, educated ourselves, removed the fears and unknowns, and treated it as a natural process rather than one big secret? One that we avoid until it is unexpectedly thrust upon us, leaving us in a state of shock, and a foggy haze. Why should we have to second guess what our deceased loved ones might have wanted regarding their care or funeral arrangements? By making decisions now, we can eliminate the guilt, sorrow and arguments that family members may deal with later. Do you/your loved one want to be on a ventilator? To be resuscitated? Do you want to be artificially fed? Have you made formal advanced directives concerning your medical treatment? Grief is part of loving someone, but it can also be transformed and made easier when we are supported and helped along the way.

Over the generations to present times, the process of dying has been outsourced and far removed from the lives of individuals. There was a time when the country medical doctor came into the home and administered to the sick and dying. The care, however, fell to the family members – not medically trained strangers in a facility. Dying occurred in the home through several conditions – perhaps through childbirth, consumption, epidemics or old age... Funerals and wakes were held at home, and burials were close to the family homestead. In the early days of cameras, photographs of the dead (perhaps the only time that person had ever been photographed) were taken for family members to hold and cherish, easing the grief. Hair from those who had passed were kept in lockets, rings or framed on the wall as precious mementoes. Summer picnics were often held at cemeteries as a means of honouring, remembering, and including the deceased in the family activities of the living. Momento Mori "remember you must die" is a Latin phrase that acknowledges the inevitability of death. Those of past generations knew that death makes our lives important. It creates focus and priority. Life was not taken for granted.

  In more recent times, it has become routine for people to die in hospitals and nursing homes. Family members have become fragmented and are geographically dispersed- unable to act as caregivers. Once a person has died, funeral homes are called in to quickly remove the body and prepare it for services and burial as arranged. Clergy members who are contacted, perhaps not knowing the deceased personally, may deliver unrecognizable eulogies that have family members wondering if they were attending the right funeral. Along the way, we have given up control and left everything to others. We assume this is how it’s done, that it’s the only way and we never question the possibility of alternatives. Doulas can discuss choices and other options you may not be aware of. Matters such as green funerals, your rights to purchase a casket from a vendor other than your local funeral home to avoid huge markups, having a "living" wake to say goodbyes and so forth.

 Equally distressing is how society wants you to be “over and done with” your grief within a few weeks. You are expected to return to work, not shed tears, not talk about your loss, and not utter the name of your deceased loved one as it may make others uncomfortable. The support that a death doula can offer to those who are mourning can be a lifeline. Doulas may be trained in grief support; they can suggest meaningful ways to honour a loss through memorial rituals or ceremonies that celebrate the person being mourned. Most of all, they are there to hold space and listen. Grief is not linear. It doesn’t end because someone thinks it should.

           I was guided to become a death doula after my own husband passed in hospice. I was his caregiver, had looked after dying family members and volunteered in hospice years before that. I never would have anticipated that this would be my calling in life. Knowing what is and isn't provided in most hospice situations, I was drawn to give extra support to those who could benefit. Dying doesn’t allow us to have “do-overs”, so when the time comes, it helps to be prepared and to get support whenever it is offered. Having important conversations and making wishes known now is the greatest gift you can give yourself and your loved ones. Time creeps up on us too quickly and we aren’t guaranteed a tomorrow. We may be struck down suddenly in a tragic accident, and our health may turn for the worse with impending physical limitations or cognitive impairments... any of which may inhibit advocating for ourselves when the time comes.

  Much of the population is afraid to be around death as they’ve had no real experience with it and can only imagine it being difficult. Coming from my perspective as a caregiver, doula and now widow, there is much to be said about having those intimate moments at home while you can and face death. I have beautiful memories of climbing into bed with my dying spouse, holding him tight when he was afraid of what was coming next. Kissing his temples gently to reassure him I was nearby... Plying his hands and feet with lotions through a gentle touch massage to help him relax... Softly playing his favourite seventies music in the background that brought smiles and memories of the days when bellbottom denim jeans, silky, polyester shirts and platform shoes were all the rage... The “I love you's" were exchanged at every opportunity, nothing left unsaid… We may not have had a great deal of time in home hospice, but what we had was quality. The absolute gift of being at the bedside of a dying loved one is seeing death as part of life, not the opposite.

 The unwritten social rules surrounding death and dying want us to be guarded, distanced and afraid of death… to not be involved in the death process and hand it off to others to deal with to avoid the "mess". We are made to believe that grief and mourning are not acceptable beyond a certain amount of time. In believing these rules, we exclude ourselves from beautiful end-of-life experiences that are possible, opportunities to say good-bye in meaningful ways, and to have conversations and reconciliations before the end. I will always push against these outdated beliefs and until I draw my own last precious breath on earth, I will be involved with death and dying - through care and education. The consequences may mean being on the receiving end of strange “looks”, fear-based reactions and being judged by society, but it’s a small, inconsequential price to pay. This work is fulfilling and rewarding and has given my life new meaning. By being with the dying, I have truly learned to live.