My husband, along with his oncologist, made the decision to stop all treatment. This was very upsetting for me. Ultimately, I made peace with it, but it was difficult. During the last three weeks of his life, he was struggling to breathe. He decided he didn’t want to struggle any longer, and on that day, he died.–SH

The suddenness and twists and turns of a medical crisis send us through a multitude of reactions. Despite our best intentions to hold onto positive thoughts, our feelings fluctuate. Some days we are full of hope, while other times despair takes center stage. The uncertainty of most illnesses and injuries causes us to be more reactive. Our moods are changed by good test results or unexpected findings.

Some prognoses are grave from the beginning, whereas other situations promise a positive ending. Regardless of the predicted outcome, patients and their loved ones come face-to-face with mortality.

There are times to have frank discussions with medical personnel, the patient, and our loved ones. The notion of this makes many of us squirm. How can we talk to our loved ones about dying? We worry it might take away their hope. Doesn’t our doctor know what we should do?

Over the past decade, end-of-life care has rapidly changed. In 1995, a study was published that examined end-of-life care.[1] Titled The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment (SUPPORT), one conclusion was that the medical community needed to improve communication with their patients and their families. Specifically, SUPPORT found a lack of communication about prognosis, patient’s preferences and goals, and about death and dying in general.

Many physicians don’t tend to mention death to their patients, and many patients don’t ask; yet patients need better information to be able to plan and have their wishes carried out.

In October 2014, Dr. Atul Gawande’s book, Being Mortal: Medicine and What Matters in the End was published, followed by an hour-long PBS special.[2] As a surgeon, Dr. Gawande wanted to develop greater skill in helping patients face end-of-life issues. His writing draws on patients’ and families’ experiences, as well as his personal experience with his dying father. Dr. Gawande indicates that today’s medical community pushes terminally ill patients too far, utilizing last-ditch treatments that can have painful and even harmful side effects while yielding little benefit. Do they assume all patients want to pursue life at all costs? Do they have issues with losing patients or talking about death?

Having a guide for conversations about end of life care can help. The Conversation Project with the Institute for Healthcare Improvement and Boston University’s School of Medicine[3] provides free online programs to guide conversations with patients and their families about their preferences for care at the end of life. Additionally, most hospitals and some medical offices have personnel who specialize in working with patients and families around these challenging topics.

I was with my brother at his appointment when the doctor told him there was nothing more they had to offer, and nothing was working. He was expecting it, but it was hard to hear. This was in March. He asked his doctor if he could make it through one more baseball season. The doctor just stared at him. He died three months later.–KL

I went to visit my mom, who was dying. She asked me if there was anything that I had to do that day and I said, “No, why? Do you want to get ice cream?” She toddled into her bedroom with her walker and said, “No, we are going to plan my funeral.” So that day, we listened to hymns, read Scriptures, and she chose the ones she wanted. We cried and laughed a lot. The service was EXACTLY how SHE wanted, down to the fact it was supposed to start at 11 a.m. sharp, no matter who was late!–AR

Resources for Planning Ahead

Stanford Health Care has a good introduction on the legal documents everyone needs to prepare to communicate their end-of-life wishes.[4]

Death with Dignity specifies the requirements of different states.[5]

Special populations require specific planning and preparation; for example, if you have a child who has special needs and/or won’t be able to live independently.

Family members with Alzheimer’s and other forms of dementia require additional decisions and paperwork.[6]

Grief

“The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same, nor would you want to.”
― Elizabeth Kubler-Ross and David Kessler

After my husband died, preparation for the funeral, the funeral itself, and the long mourning process began. It took two full years before I felt I could begin to move forward.–SH

We all understand grief in the face of a loved one’s death. But some situations lead us to grieve from the beginning of the crisis right through to the end. Grief is related to the changes and the trajectory into the unknown. Changes in the patient’s functioning, behavior, and personality give us a feeling of loss. We feel like we’ve lost the person before they die. This is particularly true in cases of dementia and Alzheimer’s, in which patients lose bits of themselves along the way. As they lose pieces of their memories and functioning, we lose them again and again.

The death of loved ones adds another layer of loss. We lose parts of our past that they kept for us, and part of our future in the way we envisioned our lives.

No matter when we grieve or what loss we’re grieving, most of us share similar reactions. Symptoms of grief include:

• Crying
• Headaches
• Difficulty sleeping
• Questioning the purpose of life
• Questioning your spiritual beliefs
• Feelings of detachment
• Isolation from friends and family
• Anxiety
• Frustration
• Guilt
• Anger

Understanding grief is most often associated with Elisabeth Kubler-Ross, a Swiss psychiatrist. In 1969, her stages of grief, often referred to as DABDA (below), were published. One does not go through these stages in order; humans are much too complex for such predictability. We shift from one to another and back again.

Kubler-Ross’s five stages are:

• Denial: feeling numb and not believing what is/has happened
• Anger: experiencing anger about our loss
• Bargaining: wanting to make “deals.” “If I get better, I’ll go to church every Sunday.” “I’ll be a better person.”
• Depression: feeling empty, hopeless, lost
• Acceptance: good days start to outnumber the bad; we have times of joy, laughter, normalcy. We can think about the one we’ve lost and revel in the good times.

David Kessler, a colleague of Kubler-Ross’s, added a sixth stage: finding meaning. His book, Finding Meaning: The sixth stage of grief, was published in 2019.[7] Kessler has experienced more than his share of loss and trauma. He couples his experiences with his professional knowledge to impart wisdom about an important aspect of adjustment and loss.

When grief does hit, it is all encompassing. It overrides other feelings and occupies our thoughts. During the first year of loss, we mentally and emotionally brace ourselves for the “firsts:” the first birthday, holidays, anniversary of the death, etc. As the year passes and we’ve somehow gotten through it, our brain adjusts a bit and our guard lowers. The lowering of our guard can throw us into a deeper feeling of loss.

Adding to ongoing challenges in the years beyond the first year is that our friends and family don’t always recognize our loss as much as they did during the first year. Many think we should have moved on and adjusted. Loss is painful, and some don’t want to see us sad or want to deal with their own sense of loss, so they pull away, causing us to lose support, friendships, and opportunities.

Situations naturally arise that shock us into reliving our loss. Filling out forms that ask for marital status, you face checking a box. Am I married or single, and why does it matter to a new doctor? You meet a parent at your child’s school who asks, “How many children do you have?” What do I say? I have four children, or I have three children, or I had four children and one died?

My Dad and most others don’t turn into angels or become blameless when they’re dying or upon their death. No one ever knows the intricacies of someone else’s relationships.–SM

I am profoundly sad and find no joy, at times.–RF

Grief, not for death, but for the death of all the hopes, dreams, and preconceived ideas or anticipations we had for our son.–RR

I was never a confident person, but after my daughter died, I question whether I have the ability to do things that used to be second nature.–KK

What Can Help

How we deal with grief is as individual as how we cope with a crisis. In his book, The Other Side of Sadness: What the new science of bereavement tells us about life after loss,[1] George Bonanno, Ph.D., suggests we seek situations in which we experience laughter and other positive emotions. A break from the pain of the loss is essential. Humans can experience positive and negative emotions at the same time, and when we are grieving, the loss sits in the front row of our hearts and minds.

A 2018 study asked over 600 bereaved adults what types of support were most helpful. Informal social support from friends and family topped the list.[2] The takeaway from this study is to surround yourself with positive people. Those friends and family who can be positive, respectful of your grief, willing to share memories, and “hold the space” are gifts. “Holding the space” refers to active listening and openness to hear what others want to talk about, as well as being with them in silence. Being with someone so completely is one of the most comforting things we can do for another.

Pacing ourselves and allowing time, feelings, and ideas to guide us is an important combination. It is often suggested not to make major changes during the first year of loss (e.g., moving, changing jobs). We can be too impulsive and want to flee from pain. We think that changing our surroundings will lessen the grief, but rushing to do so can cause regret later.

Another aspect of importance is rebalancing the brain. The chronic stress of crisis and loss has impacted our brains. Just like our bodies, our brains need to be rebuilt. This takes time and deliberate intention. One of the best ways to rebuild our brains is to rest! Taking time to sleep, engage in mindless tasks, be in nature or exercise are some of the prime ways to help our brains recover and restore balance.

In nine months, I had lost my dad, my niece, and my sister. When I came back to Maryland after my sister’s services, I took a day and stayed home like a hermit and cried. Then I felt like I needed to get back to life, helping my kids cope with the losses, getting back to work, and returning to life. In retrospect, I didn’t give myself enough time to recoup.–AM

In my mother’s final days, the flurry of activity at my parents’ home hit a  crescendo with an increasing stream of phone calls, visitors, and deliveries of food, gifts, and drugs. There was a constant buzz at all times, and when our nuclear family arrived from NY and CA, a new swirl of energy — desperate, tense, and fearful — entered the home. The day before she died, it reached a fever pitch. I remember we were all around her in the bedroom, when suddenly, quietly, the energy changed. The noise abated. The air softened as the tension fell away, replaced by a palpable calm. Struggle seemed to cease in that moment, and all that remained was love; pure, beautiful, and distinct. And in that moment, I knew that love was greater than fear, even the fear of death. This has stayed with me.–LO

Finding What Works for You

For some, hearing others’ experiences is helpful because it makes us aware we are not alone in our feelings and life circumstances. Others find it helpful to write down what they feel and experience. Writing removes any need to censor our thoughts or reactions. We can say whatever we want and not have to deal with anyone’s reactions. It gives us freedom to express our grief. Sometimes when we have freedom to reveal what sits inside, feelings and ideas emerge we didn’t even know we had.

Engaging in what you determine to be strengthening (e.g., music, nature, laughter, exercise) is important. Doing certain activities without our loved one can be challenging. Finding a new hobby or activity can offer positive paths because they don’t have a link to the past. At the same time, keeping a link through a tradition or a new activity to honor your loved one is important.

Debbie’s Experience  Don’t Send Me Plants

Receiving people’s condolences upon my husband’s sudden passing gave me comfort.  To have him and me remembered brought pauses in my grief, but soon I learned, I will never send anyone in such a situation send a plant.  Plants need care. They need watering.  Some need sunlight.  They need attention.  Without such vital care, they will die.  Don’t send me plants.  It’ll break my heart all over again to see something die.

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Resources

How To Go On Living When Someone You Love Dies, by Therese A. Rando [3]

Dying Well with Hospice: A compassionate guide to end of life care, by Paula Wrenn & Jo Gustely, R.N.[4]

A compilation about loss from authors who share their experiences in a touching, real and sometimes humorous way. Modern Loss: Candid conversation about grief, beginners welcome.[5]

Websites on grief and bereavement.[6]

Article and video about complicated grief that is well done.[7]

Article about how grief can manifest in our bodies.[8]

The Hospice Foundation site has many articles and videos related to grief.[9]

Elizabeth Kubler-Ross and David Kessler: On Grief and Grieving: Finding the meaning of grief through the five stages of loss[10]

Finding Meaning: The sixth stage of grief, by David Kessler.[11]

David Kessler has a website that offers online grief workshops as well as other resources.[12]

Nora McInerny brings insight into loss and beyond with frankness and humor in her podcast, books, and TED talk. Her podcast, Terrible, Thanks for Asking, has pieces about Nora’s miscarriage, father’s and husband’s death all within a few weeks, as well as conversations with others who have experienced trauma or loss.

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[1] Bonanno, G. A. (2019). The other side of sadness: What the new science of bereavement tells us about life after loss. New York: Basic Books.
[2] Breen, L. J., Aoun, S. M., O’Connor, M., Johnson, A. R., & Howting, D. (2019). Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study. Palliative Medicine, 34(1), 145-154. doi:10.1177/0269216319880766
[3] Rando, T. A. (1991). How to go on living when someone you love dies. New York: Bantam Books.
[4] Wrenn, P., & Gustely, J. (2017). Dying well with hospice: A compassionate guide to end of life care. Place of publication not identified: Amans Vitae Press.
[5] Soffer, R., Birkner, G., & Arkle, P. (2018). Modern loss: Candid conversation about grief: beginners welcome. New York, NY: Harper Wave, an imprint of HarperCollins.
[6] https://www.mastersincounseling.org/guide/loss-grief-bereavement/
[7] https://blog.sevenponds.com/professional-advice/what-is-complicated-grief
[8] https://www.webmd.com/special-reports/grief-stages/20190711/how-grief-affects-your-body-and-mind
[9] https://hospicefoundation.org/End-of-Life-Support-and-Resources/Grief-Support.aspx
[10] Kubler-Ross, E., & Kessler, D. (2005). On grief and grieving: Finding the meaning of grief through the five stages of loss. New York: Scribner.
[11] Kessler, D. (2019). Finding meaning: The sixth stage of grief. New York: Scribner.
[12] https://grief.com/

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Featured image courtesy of thom masat on Unsplash.