Month: July 2019

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Scared of death?

An end-of-life coach might be the answer

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You may be familiar with birth doulas. These coaches, or “birth companions” assist pregnant women through the delivery of their child and postpartum recovery. They’re not OBGYNs, but they are highly trained in how to offer emotional and physical support and guidance to a mother.

Sound nice? Plenty of moms-to-be think so, and the doula movement has been growing steadily over the past couple of years. Now people on the other side of the life spectrum can contact doulas as well to quell fears about dying and ease their transition.

In order to decide if an end-of-life doula is right for you, it’s first important to understand what exactly they are, and what they’re not.

First off: The preferred term is, in fact, end-of-life doula, rather than “death doula.” Death doula admittedly has an intriguingly spooky, cultish air about it, but it tends to perpetuate negative misinformation about the role, like the idea that these doulas assist in administering lethal injections. And in order to bring awareness to any movement or group, it helps to consistently use the same terms.

To find out more, Considerable spoke with Deanna Cochran, founder of Quality of Life Care and one of the founding directors of the National End-of-Life Doula Alliance. 

“I’ve been doing this since 2005, before there was a death-positive movement at all,” Cochran said. “What was going on was a scattering around the world … I found them when I began blogging in 2006 as a private end-of-life doula.

“I thought I was going to cause a scene doing what I was doing … I wanted everyone to know that you can have this medicine, these treatments, this therapy long before you’re sent to hospice. Nobody wants to admit they’re dying, but then people have miserable experiences dying because they’re not getting palliative care.”

So what exactly is an end-of-life doula, and how are they different from, say, a hospice nurse or in-home caregiver?

Cochran described an end-of-life doula as “a person who accompanies another through dying and death — holistic, nonmedical, practical support.”

Doulas don’t exist separately from hospice care. In many cases, end-of-life doulas work in conjunction with hospices to provide an overarching holistic experience.

“End-of-life doulas accompany hospice,” Cochran explained. “Hospice is fantastic, but the problem is they don’t have the kind of time that might be needed. Nurses can’t stay with a patient for hours and hours — sometimes the hospice would like more support for the patient but the hospice doesn’t always have the volunteers available.”

“[Think of a doula] kind of like a firefighter; the doulas understand that you never know when vigils or a high-need situation is going to happen, and they’re willing to go out there in the crisis situations. Hospice volunteers are not expected to tend to crises; they’ve planned their volunteer schedule. The doula team is that kind of team within hospice.

“We’re like mediators or advocates; we’re not advocating for the family against the system — we’re advocating for the family and the system.”

In many ways, doulas act as a bridge between the other care services end-of-life patients will receive. 

“Information gets lost between nursing home, hospital, and rehab. Medications get lost along the way, people aren’t getting informed, so a doula can make sure everyone’s informed all along the way,” Cochran said. “At death the [hospice care] team is gone; bereavement is a new team. But a doula is entered into the system before death, during, and after, during bereavement. They offer an extra layer of support not just for the family, but for the hospice team. Extra expertise, extra training, and they know their place alongside hospice. It’s not a different agenda.”

Doulas are trained to assist both the dying patient and their loved ones through all stages of death, something that most hospitals and hospices don’t supply. They have to be incredibly empathetic and ready to jump in with an appropriate care response in all manner of situations.

“[Doulas] have to be OK being a witness and not a savior; a companion, not a leader. They have to come in with curiosity, not a plan. They have to be very self-aware,” Cochran told Considerable.

Death and the dying process is a sensitive, tricky subject, and some misconceptions about end-of-life doulas have arisen as a result. Doulas are often referred to as spiritual, and their approach to help and healing has spiritual elements. “Spiritual is a term that especially means vastly different things to different people, and some patients may feel concerned by that definition.

“Doulas are not trying to replace the [hospice] chaplins by providing spiritual care. Just by being present, that’s spiritually supportive,” Cochran explained.

And, especially importantly: “We are not euthanizers! There was an ugly article insinuating that death doulas ‘do the final thing’ … Absolutely not. That has nothing to do with us. We would never be responsible for the final medication in any assisted death. That’s not our role.”

Cochran also mentioned that doulas are especially important these days because the way we die has changed. 

“We’re living with chronic illnesses for a long time. Modern marvels are promising to keep us alive; we’ve never died like this before, of course people are scared.”

By becoming aware of the dying process sooner, and as medical science keeps terminally ill patients alive for longer than these diseases used to allow, patients have more time to contemplate death and face the reality of what the end of their life will entail.

“In advanced illness, everyone in the care system is focusing on life, even in the face of dying,” Cochran said. “Let’s start having gentle, realistic conversations that this train isn’t going backwards. Let’s focus on excellent symptom management and care for the whole family to support you as best as possible and not traumatize you through a system that’s trying to turn you around when you’re not going to.”

To find out more about end-of-life doulas, and where to find one in your area, check out NEDA’s website.

Complete Article ↪HERE↩!

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Moving Forward After the One You Cared For Dies

Grieving caregivers typically face a challenging mix of emotions

By Julie Gorges

As anyone who has had a loved one die knows, grieving is a heartbreaking journey. When you’re a caregiver and the person you’ve been caring for dies, experts on grieving agree the psychological outcome and healing process are somewhat different. That’s especially true if your loved one had dementia.

I was the primary caregiver for my mother, who had Lewy Body dementia during the last years of her life. I learned that grief takes many forms, and it isn’t just about mourning someone after they die. When your loved one has dementia, you lose that person in an excruciating way — a little bit at a time. As a result, some of the grieving process begins to take place while you’re still caregiving.

After my mother died, I not only lost her, but part of my identity as a caregiver. My life had changed drastically overnight.

Other complicated feelings often come into play. “After caregivers lose the person they cared for, there is often less grief alone, but a mixture of other emotions,” explains Dr. Marc Agronin, a geriatric psychiatrist and author of The Dementia Caregiver: A Guide to Caring for Someone with Alzheimer’s Disease and Other Neurocognitive Disorders. “Those feelings may include sadness and uncertainty about the future, along with some degree of relief and a desire to move forward.”

After a Death: A Mix of Emotions

This was certainly true in my case. After my mother’s death, the emotions were overwhelming. I was relieved all of my heartbreaking duties as a caregiver were over. No more medical emergencies, constant worrying and sleepless nights. I also enjoyed my newfound freedom to take a vacation, go on a leisurely walk, spend quiet time with my husband or simply enjoy a book.

But there was a lot of guilt mixed in for feeling that way. I also felt remorse about the times I wasn’t the perfect caregiver and questioned whether I made the right decisions along the way.

On top of that, I felt lost. Caring for Mom had been my life for a few years. Most of my thoughts and feelings had revolved around her care. After my mother died, I not only lost her, but part of my identity as a caregiver. My life had changed drastically overnight.

Accept Your Feelings and Move Forward

So, how can you move forward will all the intense and contradictory feelings that come with the territory?

What I learned is that you have to accept all your emotions and be patient with yourself. Feel everything you need to feel. Lean on loved ones. Honestly discuss your thoughts and feelings with those close to you.

However, as time goes on, it’s important not to allow sorrow to become a way of life or dwell on all of the “should-haves” that interfere with recovery. In fact, you’ll need to forgive yourself for mistakes you think were made while caregiving and stop feeling guilty that you’re relieved to have your life back.

The goal is to let go of negative feelings and enjoy a productive life once again.

How is that accomplished?

After my mother’s death, I took an important step that helped me pick up the scattered pieces of my soul and begin living again.

I deemed the year after my mother’s death, my “year of healing” and listed three non-negotiable things I had to do each day. There was nothing new or revolutionary on my list. Just a few simple things that provided an anchor, ensured that I took the time to care and focus on myself and helped me get through a bad day.

My list included:

  • Read something spiritual and inspirational each day. If you’re a religious person, now is the time to embrace your spirituality and rely on your faith to help you move forward. It’s so easy to become sidetracked and allow time to slip by without any spiritual fortification. I realized daily reading, meditation and prayer were necessary every single day.
  • Exercise. I’m not talking about running a marathon or doing 50 deep squats. But, even if it was only for 15 minutes, I did something for both my physical and emotional well-being. Maybe I’d take a stroll through the park listening to the birds sing, do some Pilates or walk the dog around the block listening to soothing music.
  • Do something you love. I thought about what used to make me feel happy and brought fun and joy to my life. Then I made a point of putting those treasured activities back into my daily life. In other words, at the end of the day, I made sure that I did something just for me.

You know what? My list worked. Accomplishing these three things every day helped me feel calmer, more centered and, yes, happier.

I’d recommend making a list of your own. Maybe you’ll include laughing each day, spending time in nature, learning something new, being silly or enjoying time with loved ones.

Helping Others Helps Yourself

Perhaps one of the most important items to put on your list is to perform one simple act of kindness for someone else each day. Compassionate deeds and volunteer work can help you find meaning and purpose again.

“I think focusing on others helps a person to move forward,” says Vicki Tapia, author of Somebody Stole My Iron: A Family Memoir of Dementia and co-founder of AlzAuthors, a website featuring authors who write about their experiences related to Alzheimer’s and other dementias.

Tapia cared for both her parents with dementia before their deaths. “Doing something helpful outside of yourself can often be a balm to the soul, whether it’s lending a listening ear or volunteering to help with a support group for other caregivers,” she says.

Finding a New Perspective on Life

Losing someone you love changes how you look at the world and forces you to acknowledge that life doesn’t last forever. The experience can clarify your priorities and redefine your path. So, embrace the new you and your new life.

“Find a new role that provides meaning and purpose,” suggests Agronin. “This might involve renewed relationships with others, volunteer work, travel or some other pursuit that provides a sense of personal direction.”

Several months after Mom died, my husband and I took an anniversary trip to Chicago. Even though I have a fear of heights, I was determined to sit on one of those scary glass enclosures that jut from the Willis Tower Skydeck, a whopping 103 floors above the city. I had this overwhelming feeling that I had to start living again and this was the first step. So, I bravely forged forward onto the glass and I felt alive, empowered and revitalized.

I have faith that you’ll take that first step too. You will heal, move forward, and rediscover yourself. You will feel happy again. As Martin Luther King Jr. famously said: “Take the first step in faith. You don’t have to see the whole staircase, just take the first step.”

Complete Article ↪HERE↩!

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7 Ways to Move from Grief to Gratitude When Death Comes Calling

By Susan Ducharme Hoben, Author of Dying Well: Our Journey of Love and Loss

We may intellectually accept that death is normal and inevitable, but it doesn’t feel that way when it comes knocking on your door. My family was forced to come to grips with mortality when my husband Bruce was diagnosed with an aggressive stage 4 cancer. 

While we may think of bereavement as happening after someone’s death, for us it started when we accepted that Bruce was dying. That acceptance allowed us to focus our energies on achieving the peaceful end-of-life experience that he wanted. On Bruce’s journey I learned many powerful life-affirming lessons about finding gratitude in the face of death. 

Here are 7 lessons that can bring peace and even a sense of joy to what appears to be the most heart wrenching experience we can ever face.

1. Know what a peaceful end-of-life experience means 

At the end of life most of us want to have closure. We want to share our stories and wisdom, say meaningful goodbyes, know that our life had meaning, that we will be remembered, and that our loved ones will be ok. It’s important to describe what that looks like in your personal situation and what matters most to you at the end. Having goals and working towards them will provide an important feeling of purpose and achievement for everyone involved. 

2. Manage the fear of the unknown

If you have not thought about death, fear of the unknown can lead to anxiety and distress. Bruce’s fear of not being able to breathe was calmed when he learned that morphine would control shortness of breath. We didn’t know that the body has an orderly shutdown process that makes it predictable what will happen and when. Knowing what to expect and what can ease the end-of-life journey will help everyone feel more confident and prepared. 

3. Remove barriers to getting the desired care 

Our healthcare system can result in end-of-life care that is aggressive, expensive and not aligned with patient preferences. Avoiding painful and unwanted treatments requires constant championing. Having an advocate working on your behalf to ensure your decisions are honored will provide a much-needed feeling of control.

4. Take a real walk down memory lane 

Bruce and I visited his hometown where he retold the stories of his childhood standing in the places where they actually happened. Reminiscing about these fond memories brought the joy of those past moments into the present. Encouraging loved ones to share stories will also help affirm that their life mattered and will always be present in the hearts of the ones still here. 

5. Gather family and friends to celebrate a life well-lived 

Bruce was the guest of honor at his own “Irish Wake” where family members shared laughter and tears as they told stories of their time together. His colleagues roasted him with funny anecdotes and heartwarming tributes of what he meant to them. Gathering with family, friends and colleagues demonstrated to Bruce that his life had profound meaning, and that he would be remembered. Their outpouring of love and respect stayed with him until the end and will stay with me for the rest of my life.

6. Recreate treasured times together  

We took our children and grandchildren to a beach house for a week, allowing Bruce (and us) to do the things he loved to do. Every afternoon we reflected on joyous moments of the day, recalling memories and emotions from many happy times spent near the ocean. The memories themselves, as well as the sharing of them, brought all of us joy and comfort. 

7. Leave nothing left unsaid

We all want to die without regrets. Ideally we would do that by living without regrets. But if there is a need to make amends or acknowledge what someone has done for you, it’s vital to do that before you run out of time. Our minister told Bruce and I to use these words liberally: I forgive you. Please forgive me for any ways we may have hurt each other. Thank you for your presence in my life. I love you. You can use any words that feel right for you, as long as they impart a sense of love, compassion and resolution. 

Grief is a normal and important part of coping with death. However, there are ways we can soften its sting, and even welcome and embrace joy and celebration. The most powerful antidote to grief is being grateful for a life well-lived and for the people who supported and affirmed us.

With Bruce setting the tone, we helped him live fully to the very end. His last two-and-a-half months were some of the most celebratory, peaceful, and intimate we had shared during our forty-six years together. The feeling of gratitude, years later, has not abated for me, his family or his friends, and has provided a powerful and healing path for future generations to come.

Complete Article ↪HERE↩!

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6 things not to say to a dying friend

There are plenty of ways to make matters worse. Try these responses instead

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It’s never easy to hear that a friend is battling a life-threatening illness. When confronted with the idea of death, especially when it concerns someone one loves, it’s often hard to know what to say or how to react.

It’s normal to experience a whole host of emotions, from denial to anger to grief, and it’s important to be able to talk with both the friend and other professional and personal outlets as needed.

However, in times of confusion and sadness, it’s very, very easy to say the wrong thing. Here are some examples of common verbal faux pas, and what to say instead.

“How are you feeling?”

According to Dr. Sal Raichbach PsyD at Ambrosia Treatment Center, asking someone how they feel is a natural and instinctive way to start a conversation.  “But, for someone with a terminal illness who is likely in pain, asking how they are feeling leads to further discussion about their illness,” Dr. Raichbach told Considerable.

“Many people suffering from diseases are comfortable talking about them, but some aren’t.

What to say instead: “Start the conversation with a positive greeting, such as, ‘It’s great to see you,’ ” Dr. Raichbach advised.

A good way to navigate conversations with an afflicted friend is to let them bring up discussions of their illness. If they want to talk about it, you can be a great friend and offer support by listening. If they just want to talk about last week’s episode of Jeopardy, however, let the conversation be just that.

“Everything happens for a reason.”

Whatever you do, avoid clichés, especially ones that might clash with your friend’s personal beliefs. “Such statements can make the individual feel that the illness is somehow their fault. Even though it might not be your intention to make them feel responsible for their disease, it could lead them to dwell on the uncertainty of their situation,” Dr. Raichbach said.

There’s nothing worse than feeling like karma has somehow contributed to one’s illness, and your friend might not have reached a place of acceptance with their diagnosis yet.

What to say instead: Silence is golden in this case. People facing life-threatening illnesses have plenty of opportunity to consider their own beliefs and consult with spiritual advisors if they choose. Let your loved one express their own views, and be there to lend a nonjudgmental ear.

“I’m sure you’ll get better!”

Kriss A. Kevorkian, PhD, MSW, is a  thanatologist who teaches and offer programs for seniors around related to end-of-life care and planning. She told Considerable that these expressions of false hope usually come from a fear of thinking or talking about death.

What to say instead: “One thing to say as a loved one is dying is, ‘I’m here with you,’ ” Dr. Kevorkian said. “Be with the dying and hold hands if that’s OK, connect, and be present.”

Often, one of the most powerful actions you can take when supporting a terminally ill loved one is simply being there. Offering your time and physical presence tends to go much farther than we give it credit for.

“You don’t look very sick!”

This is another one that Dr. Kevorkian hears a lot, and, quite frankly, it’s not very helpful. Illnesses present in all sorts of ways, and just because someone hasn’t lost all their hair from chemo, it doesn’t mean their disease isn’t grave. Even if these sort of sentiments are meant as a joke, one can’t always be sure that a terminally ill patient will take them that way.

Say this instead: Instead of commenting on their looks, remind them of a time they brightened your life and talk about how great a friend they’ve been.

Sherry Cormier, PhD, recommended affirmations such as, “I’m thinking about you as you go through this process” or, “I’m sending love (or prayers or hugs) your way.” Show your friend that you acknowledge the difficulty of what’s happening and will stick with them regardless of their struggle.

A simple “I love you” has also been known to work wonders.

“You’re going to a better place/ you’ll be with God soon.”

As Dr. Kevorkian pointed out, such sentiments make bold assumptions about a person’s faith and belief systems. Even if you know that your friend believes in heaven, God, or a peaceful afterlife of some sort, don’t assume they’ve acknowledged or accepted their place there quite yet.

What to say instead: The best way to learn where someone might be with their diagnosis and what they need from you is to ask. As Dr. Cormier told Considerable, try “‘How could I (or we) be most helpful at this time?’ or ‘I’m wondering if there are specific needs you or your family have that we could help with?’

Don’t assume you know what the needs are. You might take decide they need food and take it over at a time when they are inundated with food and end up throwing your dish out.”

Ignoring the elephant in the room altogether

“The fact is, often people say nothing to terminally ill or dying people or their loved ones,” Dr. Cormier said. “They are too unsure about what to say, so they act as if nothing is wrong and talk about the weather. Saying nothing is invalidating.

What to say instead: “What is much more helpful is to say something that acknowledges the situation, like: ‘I’ve heard you’ve been diagnosed with an aggressive cancer.’ Then add a comment that expresses empathy and concern such as, ‘I’m really sorry to learn this.’ ”

After this, let them dictate how much of the illness they want to talk about. If they want to dive in and discuss their doctors’ appointments, offer yourself as a compassionate listener. If they don’t want to talk about it at all, so be it. You can let them take the reins from here, but it’s best to at least acknowledge your availability to discuss their pain and hardship.

Interactions after this initial acknowledgement can circle back to Point #1: Express gratitude about seeing your friend, but let them control how much they want to talk about their illness.

Make sure to seek out your own counseling methods as needed for dealing with any kind of loss and grief. Losing a loved one is never easy, and knowing it will happen sometime soon is confusing, upsetting, and difficult. Knowing the right things to say will at least help part of the process for both parties.

Complete Article ↪HERE↩!

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‘Dying is so medicalised. It makes people fearful’

The founder of Soul Midwives on how greater compassion and care can lead to people having a more gentle, tranquil death

Felicity Warner: ‘We need to take the care of dying people back into the community.’

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Felicity Warner wants everyone to die well. She is the woman behind Soul Midwives: non-medical companions who provide one-to-one holistic and spiritual care to people who are dying. The term “midwife” is no accident. It refers to the similarities between drawing our first breath and our last. Just as there are certain stages for a woman in labour prior to giving birth, so are there certain end-of-life stages before someone eventually dies, says Warner. It’s the same idea as end-of-life doulas. “A soul midwife will recognise those stages and will work with them like a midwife would at birth.”

Soul midwives support a dying person to set out their wishes for the final days in a death plan. They listen, keep vigil, allow people to talk openly about their impending death and fears, and provide therapeutic support to help alleviate anxiety and pain. This can be through breathing techniques, massage, sound and music therapy and essential oils. As the “soul” in the title suggests, the role also offers a spiritual dimension linked to healing and detachment. But it’s not just about helping people to die without fear, loneliness or anxiety. It’s also about making people realise they are valued, says Warner. “I’m very keen on that because a lot of people we work with don’t have anyone in their lives. Making them feel that they are special is a very big part of our role and to honour them as the people that they have been, because you can be made to feel very anonymous when you’re dying, whether old or young”.

The daughter of the former Conservative MP David Mudd, Warner cites the “harrowing deaths” of her grandmother – with whom she had lived after her parents divorced when she was six, who died of lung cancer when Warner was 14 – and her stepfather two years later that forced “an enormous amount” of processing and reflection early on and led her to become a health journalist.

In the 1990s, Warner found herself writing a number of features about women dying of breast cancer. Interviewees revealed their loneliness and isolation and the sense of being locked in a room with an elephant in it. “The biggest thing was the feeling that they couldn’t talk to anybody honestly about the fact they knew they were going to die, because everybody kept saying ‘we’ll get you through this; you won’t die’.”

They talked and Warner listened. “I think there was a healing in that they could just talk frankly about how they really felt to somebody who wasn’t judgmental in any way.” But Warner saw her journalistic boundaries begin to slide as she stepped in to fill unmet needs, such as giving a massage after one of the women confided that “nobody touches me any more” because of her cancer. When the last of six women she had interviewed died, her decision to help dying people full-time was realised.

She began volunteering in her local hospice, where she noticed “big gaps” in care delivery: the “one-size-fits-all” approach, for example, that saw everyone “wrapped up with crocheted blankets” and “given plastic cups to suck out of”, regardless of their age or their personal needs.

“I sat there thinking it would be so useful if someone could join up the dots in what I was seeing with people who were dying. If there could be some kind of middle ground between the clinical care given and the sort of tender loving care that goes such a long way when you’re really feeling ill, because that seemed to be very lacking or offered very willy-nilly and not always to everybody.”

Warner began road-testing what would become her “gentle dying” approach – the basis of soul midwifery. “It was realising how little things can make such a difference to people at the end of life. Even just sitting and holding their hand is massive to someone who has got no one else sitting with them, and having time to do that is a big thing.”

Warner outlined her philosophy in a book in 2003, then began delivering training in Dorset, where she lives. So far, more than 1,000 individuals have paid to attend her courses, including Macmillan and Marie Curie nurses, doctors, chaplains, social workers and psychotherapists working in the NHS, as well as people from South Africa, Canada, the US and Australia. Around 40% of trainees have gone on to practice.

Warner runs a referral service from the Soul Midwives website. Many practitioners offer sliding scale charges, opt for a donation or charge nothing at all. “Nobody would ever be turned away if they could not pay,” says Warner. “It is not about the money. Nobody would be excluded on financial grounds.”

Soul midwives can now be found in care homes, hospices, hospitals and within the home throughout the UK. They liaise with GPs and district nurses if someone wants to die at home. Warner admits that it’s taken time to build trust with other care professionals, but adds, “this trust has grown as the value of our work is being understood and seen.”

For her, soul midwifery is a movement that can fill the gap once met through closer community networks and she views dying as a process rather than an event – something that she feels has been lost over the generations. Recently Warner has introduced the idea of soul midwife “residencies” so that end-of-life discussions leave the confines of hospitals and hospices. “We need to bring the care of dying people back into the community. It’s been so medicalised and taken out of most people’s normal environment, and that makes it very fearful [for people].”

She cites a recent example of a soul midwife pitching up at a library for a morning so that people could come and discuss various aspects of dying. She now hopes to persuade a coffee shop chain to host residencies.

What is clear is that ensuring a tranquil, gentle death for others is also good for Warner’s own soul. She says: “I feel it’s my reason for being here.”

Complete Article ↪HERE↩!

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Grief is not a thing of beauty but it has helped me discover new parts of myself

It has taken me to the page, to a microphone, and yes, sometimes to bad decisions and booze

‘Bad things will happen, they will keep happening. But there will be little bursts of brilliance where the world feels impossibly wonderful just by sheer contrast.’

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I’ve had an amazing two years, by anyone’s measure.

First, my mother died a very hard death from cancer. Then I ended my marriage, followed by a gut-wrenching estrangement from my formerly close father. I nearly bled to death in a storage room in a Sydney public hospital, and a few months after that my unborn baby died. It sounds like the plot of a B-grade movie. But here I am, staring myself down in the mirror each day urging myself to carry on, whispering: “Yes, this really is your life now. Yes, you must still shower and dress and go to work.” It is one thing to know figuratively that bad things can happen to you at any moment. It’s quite another to live that realisation over and over again.

When I was grieving my mother, I searched out the stories of people who experienced unfathomable loss. The Year of Magical Thinking became my bible. I followed Joan Didion as she stumbled her way through comprehending the death of her husband and daughter. Back then, my singular loss felt so big that only stories of utter tragedy seemed up to the task of providing me insight into the contours and trajectory of grief. But in time, we can become accustomed to almost anything.

I fear I have become one of those poor souls, like Didion, that people treat as an oracle. How could so much possibly happen to one person? How does she keep going? How did she make it through? Answers I used to search for in Didion’s writing, people now seek in me. Surely, with so much suffering must come wisdom.

Just like Didion, I don’t have any answers. As she puts it: “You sit down to dinner and life as you know it ends.” This is how I feel, but with a kind of repetition that makes it seem almost idiotic I still don’t see it coming.

I am not stronger for my grief. Grieving is not a state of grace and there is no beauty in it. I can say, though, that grief has different flavours. Something I could not have understood until I’d sampled so many types. And grief has brought forth parts of me I didn’t know existed. Grief has taken me to the page, to a microphone, and yes, sometimes to bad decisions and booze.

When my mother died I had felt fury and injustice. My grief spilled over into every area of my life – giving me a certain wildness behind the eyes. From that place of indignation I began to write. I wrote about things, and I wrote in ways I never knew I could. Grief, it seemed, had at least given me a gift.

When my husband, father and I went our separate ways I spat and raged at the world. “I dare you,” I said to no one in particular, “to try and take more from me.” My anger at the destruction of my former life jumped off the page and for the first time I began to perform. I stood in a room of a hundred strangers and read letters I had written to my dead mother. Grief had now taken away my fear.

When I came within a whisper of losing my own life, I was more nonchalant. After a day spent in a hospital emergency room, more than half my blood gushed into my abdomen while I sat waiting for treatment. Afterwards, the doctors told me I nearly died. I fear grief, but I don’t fear death. Not being there to grieve the loss of my own young life, I was rattled but largely unaltered. A friend captured it well: “You are perhaps a little too comfortable with your own death these days.”

By the time my baby died, I longed for the energy of earlier grief. When in my second trimester they couldn’t find a heartbeat, I sobbed tears of defeat. The grief of my dead baby took me to bed. While it is perhaps the most unfair grief of them all, I no longer have the energy to be shocked or enraged by the injustice. Finally, grief has worn me out. There is no realisation, no undiscovered talents, no devil-may-care attitude. There is just exhaustion. A kind of existential exhaustion that no holiday or rest can cure.

I explain to friends: “I am just one of those people.” I just seem to have one of those lives that are marked by great fortune but also great loss. A dream career, an amazing partner, a beautiful home and unintelligible loss.

I have no other explanation. And somehow it brings me to a type of acceptance – bad things will happen, they will keep happening. But there will be little bursts of brilliance where the world feels impossibly wonderful just by sheer contrast.

No, there is nothing you can learn from me. I am not wiser than I was two years ago, and I have nothing to teach you. But come, come and marvel at the relentlessness of life and our ability to endure it. I can show you that with time, you too can become accustomed to almost anything.

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Not all Americans have a fair path to a good death – racial disparities are real

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What does it mean to “die well”?

The world got an idea recently from the 92-year-old Buddhist monk and peace activist Thich Nhat Hanh, who popularized mindfulness and meditation in the U.S. The monk returned to his home in Vietnam to pass his remaining years. Many admired his desire to live his remaining time in peace and dignity.

Researchers from the University of California, San Diego recently did a literature search to understand what Americans might consider to be a “good death” or “successful dying.” As can be expected, their findings varied. People’s views were determined by their religious, social and cultural norms and influences. The researchers urged health care providers, caregivers and the lay community to have open dialogues about preferences for the dying process.

As scholars who study social health and human services psychology, we found something missing in these conversations – how race impacts life span.

It’s important to recognize that not everyone has an equal chance at “dying well.”

Black population and ill health

Take the disease burden of the African American population.

African Americans experience an earlier onset and greater risk of what may be referred to as lifestyle-related diseases, including cardiovascular disease, stroke and diabetes. More than 40% of African Americans over the age of 20 are diagnosed with high blood pressure, compared to 32% of all Americans.

In addition, the Centers for Disease Control and Prevention reports that the likelihood of experiencing a first stroke is nearly twice as high for African Americans compared with whites. African Americans are more than two times more likely to experience a stroke before the age of 55. At age 45, the mortality rate from stroke is three times higher for blacks compared to whites.

This disease burden consequently leads to their higher mortality rates and overall shorter life expectancy for blacks compared to whites.

And while the life expectancy gap differs by only a few years, 75.3 for blacks and 78.9 for whites as of 2016, research suggests that African Americans suffer more sickness. This is due in part to the increased prevalence of high blood pressure, obesity and diabetes in this population.

Genetics, biological factors and lifestyle behaviors, such as diet and smoking, help explain a portion of these differences. However, researchers are still learning how race-related social experiences and physical environments affect health, illness and mortality.

Access to health care

factor is that African Americans have historically underutilized preventive medicine and health care services. They also delay seeking routine, necessary health care – or may not follow medical advice.

One study found that during an average month, 35% fewer blacks visited a physician’s office, and 27% fewer visited an outpatient clinic compared with whites.

“The only time I go to the doctor is when something is really hurting. But otherwise, I don’t even know my doctor’s name,” said a young African American male during a research study in Chicago, Illinois.

There are reasons for this mistrust. Researchers who study medical mistrust argue that high-profile cases of medical experiments are still playing a role in how African Americans view health care systems and providers. In the past, physicians have intentionally done harm against people of color. A well-known case is the Tuskegee Study of Untreated Syphilis in African American men, which lasted from 1932 to 1972.

In this clinical study, 399 African American men, who had already contracted syphilis, were told that they were receiving free health care from the government. In fact, doctors, knowing their critical condition, were awaiting their deaths to subsequently conduct autopsies and study the disease’s progression.

Even though penicillin had been proven to treat syphilis by 1947, these men were denied the treatment.

Why discrimination matters for health

Other studies suggest that regardless of their knowledge of past medical abuse, many African Americans have low levels of trust in medical establishments.

“Doctors, like all other people, are subject to prejudice and discrimination,” writes Damon Tweedy, author of “Black Man in a White Coat: A Doctor’s Reflections on Race and Medicine.” “While bias can be a problem in any profession, in medicine, the stakes are much higher.”

Unfortunately, these fears are underscored by empirical evidence that African Americans are less likely to receive pain medication management, higher-quality care or survive surgical procedures.

In addition, a growing body of literature has established that experiences of discrimination are extremely harmful for physical and mental health, particularly among African Americans.

This research adds to the body of evidence that experiences of discrimination harm people’s health and may contribute to the increased rates of premature decline and death among blacks.

What does it take to die well?

As African American scholars, we argue the “art of dying well” may be a distant and romantic notion for the African American community.

African Americans are also exposed to earlier and more frequent deaths of close loved ones, immediate family members and friends.

Their increased “vulnerability to untimely deaths,” writes Duke University scholar Karla Holloway, shows African Americans’ lack of access to equitable and fair paths in life.

Before defining “a good death,” American society must first begin to fundamentally address how to promote quality living and longevity across all racial groups.

Complete Article ↪HERE↩!