Earlier this year, I watched my mother and father care for their sick and elderly mothers for the last days of their lives, until eventually within a month of each other (to the day actually) they passed away both silently in their sleep. My maternal grandmother had struggled with heart disease in those last few years returning to the hospital almost every other month from shortness of breath that was almost always caused by a mild stroke. We celebrated her 80th birthday the year before in June before 2017 came in with a vengeance that sent her to hospital, only this time from a stroke that ended up paralyzing the whole right side of her body and additionally the diagnosis of blood cancer. Still, my grandmother would wave when she could and smile at my two-year-old daughter as my mother and aunt cared for her in her last days of at-home hospice. My paternal grandmother fell sick shortly after, struggling with dementia for almost the last decade of her life. My father is still cleaning out her house along with my aunts and uncles as they try to make sense of their lives and put together pieces of their childhood one black and white photo at a time.
As anybody who has ever witnessed death probably realizes, particularly with the elderly, the difficulty doesn’t lie in letting your loved ones go. You reach a point in life (for me it happened when I hit 30 and had a child) where your mortality becomes a very real thing and you recognize that many of your loved ones are facing their final chapter in life. You begin to subconsciously prepare yourself and make peace with the fact that each time you see them may be the last. I think the difficult part is witnessing your loved ones suffer and watching them become shells of their former selves, particularly when they are succumbing to chronic ailments such as cancer. The “young and fly” grandma you used to know that could bop to Rick James and throw shade better than a beach umbrella is now taking her meals through a straw and struggling to smile and you just want her to be at peace.
My parents had the support of their children and siblings, but what if that isn’t enough for some people and moreso what if the person who is slowly seeing their life slip away needs some assistance accepting the inevitable? A recent Bustle article sheds some light on the service of “death doulas”. Doulas (a term which simply means “a woman who serves”) are becoming more popular in our culture and are most commonly associated with transitions in life such as birth. There are even abortion doulas for women who need support while ending a pregnancy. Now there are “death doulas”, a person of either gender who focuses on companionship and personal needs of clients who find themselves facing their last days. Huffington Post refers to these people as also end-of-life doulas or palliative care doulas which can be a nurse, social worker or trained volunteer who is there to offer compassion and understanding outside of a patient’s medical need. These doulas can offer assistance not just to the dying, but also friends and family struggling to come to terms with the situation. A death doula’s job is basically to make sure no one has to face the end of their life alone.
“There are so many people who are facing the end stage of life alone,” Amy Levine, executive director of the Doula Program, told Huffington Post. “In my experience working with people at that stage, the real stress is often that no one wants to talk to them about it. That’s very isolating.” The Doula Program to Accompany and Comfort is a non-profit based in New York and has been active since it was founded 2001. Volunteers visit one individual who has been diagnosed with a life-threatening illness at their place of residence (be it a hospital, home, or nursing home) weekly until he or she passes. Each year the organization receives 200 to 300 applications and currently the program has approximately 60 volunteers actively paired with patients. The program has been proven to help lessen anxiety and improve the mood of the terminally ill as well as helping loved ones make the most of the time they have together and finding healthy ways to cope with loss.
In a Paste Magazine article, Janie Rakow, president of the International End Of Life Doula association explains that a doula’s work commonly takes place in three stages. The first stage allows the family a safe space to discuss their thoughts surrounding death including their fears and personal beliefs. During this time family may make arrangements for a vigil or identify music and quotes to represent how their loved one would want to be remembered. The second stage occurs when a patient begins to actively die. The doula is present during the death and stays with the family, providing comfort and support, until after the funeral home has come allowing different members to walk away and take breaks when needed. The third stage occurs after the death when the doula remains in place to help answer any lingering questions and attempts to make sense of the situation and help with moving forward.
Everyone who knows me knows I always say, “Emotions are hard.” Even families who openly discuss what they’re going through on a regular basis may find it difficult to process death and express how they feel about it to others. For my family who had already been dealing with strained relationships since before my grandmother fell ill, losing the matriarch was the ultimate test in being vulnerable, being honest, and growing up. When my grandmother first received her cancer diagnosis, I witnessed family members self-medicate, fight, and even avoid her as well as one another and other unhealthy coping mechanisms as they struggled to grasp the situation and their place in it. If anything, death doulas can help to act as an objective person when family and friends can’t see beyond their own emotions to interact and go through the grieving process in a healthy way. Even now, communication between family members is scarce and relationships are strained. But death doulas are one step in looking at death in positive way by helping families focus on love and connection instead of loss and separation. Death doulas can help make sense of situations and offer support, because life is hard, and so is death for the ones that are left behind.
To learn more about the type of support doulas can offer or if you’re interested in becoming one, check out the nonprofit International End of Life Doula Association (INELDA).
Toya Sharee is a Health Resource Specialist who has a passion for helping young women build their self-esteem and make well-informed choices about their sexual health. She also advocates for women’s reproductive rights and blogs about everything from beauty to love and relationships. Follow her on Twitter @TheTrueTSharee or visit her blog, Bullets and Blessings.
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