terminal illness

12/29/2022

Anticipatory grief: Mourning a loved one before they die

silhouetted tree branches frame night sky where bright moonlight peeks behind clouds to create a mournful mood
Night Sky with Moonlight by Teresa TL Bruce

What do you say to someone who’s mourning a loved one before they die? What do you say to a loved one who’s dying? Although I’ve walked similar paths of anticipatory grief, each time feels like starting over because it is starting over. Each loss we mourn is unique to the relationship we have with the one who’s dying.

Should you wish someone with a terminal illness a cheerful “Happy New Year”? Maybe. Maybe not. Will your loved one likely live to see the new year come around? Will they see it but suffer further as it progresses? Perhaps a better greeting might be along the lines of “I’ll be thinking of you as the new year rolls around.”

Before Mom died

The summer when Mom’s doctors told us she had perhaps six months left to live, the rest of us thought, at first, variations on “Let’s hope she can hang on until ___,” filling in the blank with events, milestones, and holidays: my parents’ anniversary, her first grandchild’s baptism, Thanksgiving, Christmas, the birth of her next grandchild, New Year’s Day …

My mother, however, somehow knew better.

Sometime in the first three weeks after her diagnosis, while her handwriting still looked like her own, Mom penned messages onto the family calendar. When, months later, we turned the pages to November and December, we found her handwriting across the days of Thanksgiving and Christmas, days she knew she would not live to see:

Visiting the terminally ill

During the weeks of Mom’s all-too-fast yet slow terminal illness, we had plenty of time for long talks, reminiscences, and nothing-left-unsaid goodbyes.

Friends and family members came to see her and said their goodbyes as well. Some brought her goodies or magazines or flowers, but the most valuable gift they gave her was their time. Those who made their visit about her — how much they loved her, experiences they’d shared with her, and lessons they’d learned from her — brought comfort not only to her but to our whole family. And yes, they acknowledged how much they would miss her (and sometimes cried with her as they said their last goodbyes).

It was a sorrowful yet sweet, sacred time for our family.

When death strikes suddenly

My husband’s death, under much different circumstances, gave us no time — not even one minute — to prepare. Words like sudden or unexpected do little to portray the incomprehensible shock that shook us to the core. The yet-unexplained illness he suffered for a couple of years before he died had no bearing (we think) on the condition that took him without warning.

We had no chances for goodbyes or resolutions or reminiscing with him — only with ourselves.

And also with the brave, compassionate, empathetic family and friends who went out of their ways and beyond their comfort zones to sit with us in our grief, to listen to our rantings and sobbing, and to share stories of him (once we were able to let ourselves hear them). Those who helped were the ones who did not preach at us, did not tell us how to feel, and did not offer greeting-card platitudes. Instead, they sincerely sorrowed alongside us. They listened.

Another slow goodbye

Now, my family is saying another long, drawn-out, inevitable goodbye, but it’s far different than when my mom prepared to pass.

My dad is under hospice care. (I cannot praise his hospice care team highly enough. They are amazing.) The good news means he has access to health care and social workers whose compassion and experience can guide not only him but our family through this time of transition. The bad news, of course, is that qualifying to receive hospice care happens only when you are terminally ill.

My dad is terminally ill.

My dad is dying.

Bit by bit.

Slowly.

And so we mourn. Again. Sometimes with him, sometimes without.

Mourning before death

Age-related illnesses are gradually but progressively shutting down my father’s brain and body. The decades’-widowed, larger-than-life former football player who never raised his voice at me is shrinking into a different shape and temperament. Flecks of his fulfilling faith and hints of his quick humor still shine through on good days; blemishes of fear, confusion, and irrationality cover others.

My dad is still my dad, and he’s still with me, sort of. For now. At times.

But my dad is also no longer my dad, and he’s also no longer with me. Not fully. He’s here, but he’s not. He’s still living, sort of, but he’s not. I rejoice in the good moments we have together, yet I sorrow over their translucent, fleeting, fleeing reminders of what his life was compared to what his life, his end of life, is becoming.

Grieving the slow death of dementias is complicated.

Mourning the slow death of my dad is more so.

___

If you know someone impacted by any form of dementia (and the likelihood is that you do), find ways to help and encourage them through organizations like the Alzheimer’s Association and the Alzheimer’s & Dementia Resource Center.

01/12/2018

Facing Death in the Family

Today was my uncle’s funeral.

I’ve posted seldom since late October, when hospice staff told my aunt to make sure all the family visited within two to three weeks. They didn’t expect my uncle to be with us longer.

When I got the call, my aunt’s soft voice delivered that sentence in a three-fisted punch. The triple blows landed in a tight triangle, right where years before I’d felt grief’s wrecking ball hit mid-gut on my insides. My breath whooshed out as I tried not to cry into the phone:

My uncle.

My aunt.

My cousins.

I didn’t want it to be true. Denial, of course. Didn’t want to think of a world without him here. Selfish, raw, pre-grieving — thinking all about me missing my hilarious, compassionate, faithful uncle. About my kids missing their great-uncle and my dad missing his half-century brother-in-law.

Didn’t want my aunt forced to wear the title Widow. Yes, capitalized. Boldfaced. Italicized. Quadruple-underlined. 800-point font. Thinking all about her — knowing how I’d ached while mourning my husband after 24 years together and not wanting her to feel that. Grieving for what I knew she’d face. Yet knowing I had no idea how she’d feel after more than twice that time with my uncle.

Didn’t want my cousins bereft of their dad. Remembering  how I felt losing — missing — my mom and thinking about my cousins, picturing their pain at losing their dad. Seeing again my children’s grief after their dad died and not wanting that raw ache for my cousins and their kids and grandkids.

All this within seconds of hearing my aunt’s words.

My uncle surprised us all.

Within that hospice-projected two to three weeks, my aunt and uncle’s kids, grandkids, and great-grandchildren all visited with him. Other family members and close friends came too. They shared stories, memories, and love. Said whatever needed saying. Sweet visits, prompted by heartbreaking need.

Beloved uncle, glasses, sour candy, teasing, TealAshes.com

My funny uncle with a piece of candy he didn’t expect to be so sour. (Family photo by Teresa TL Bruce, TealAshes.com)

My uncle’s eyes still twinkled as he teased, and they softened as he expressed love and appreciation. He and his family enjoyed one another through post-prediction milestones: Halloween, his daughter’s birthday, Thanksgiving, his 57th wedding anniversary, and Christmas Day.

Meanwhile, I all but stopped writing. 

How could I post new material about what to say when someone dies while my dear uncle lay slowly dying? Time and again, my grief over his too imminent passing rebooted feelings I experienced while caring for his sister — my mom — as she neared the end of her life more than 20 years ago. In my mind, I was back in Mom’s bedroom, looking on as my uncle — this uncle — arrived in time to tell her goodbye.

But it wasn’t about my feelings. In the days since my uncle’s death, and on this day of his funeral, and in the days, weeks, months, and years to come, it’s about my aunt, my cousins, and their kids. Yes, I’m grieving my uncle’s terminal illness and passing. But my grief is also for them — my uncle’s immediate family. Theirs is the primary, innermost loss.*

Friends and our church family have been thoughtful in their support of offered meals and visits. For now, the family has requested privacy in grief, declining such offers with gratitude for their kind intentions.

In every loss I’ve suffered, the day of the funeral brought a turning point — in some ways, a relief of sorts, unwelcome though it was. Sometimes, the service also, sadly, began the waning of public awareness and outreach. Well-meaning folks assume memorial gatherings bring so-called closure to mourners.

But no. Closure implies an ability to shut the door on grief and walk away. In reality, mourning loved ones lasts much, much longer — which is why it’s so important to reach out a month, two months, six months, a year, and further after someone you know loses a loved one.

In time, we learn to walk with our grief and its connection to the one we (still) love.

In the meantime (and beyond), please keep reaching out.

___

*See  Grief — It’s All in the Family for more about how relatives might experience grief differently.

12/30/2014

New Year, New Grief

You might assume the New Year’s arrival will bring healing relief to friends whose loved ones died during the last year. You might think, “Now that it’s a new year, not the year of their loss, things will be better, right?”

Not necessarily.

For some mourners, replacing their calendar from the year of a significant loss might feel like it offers a “fresh start.” For many of the recently bereaved, though, the New Year marks another level of removal from beloved ones, another severing of increasingly tenuous connections to them and/or their memories. In previous years their loved ones lived; in all the years to come, they won’t. Once that calendar changes, shared years are forever left behind.

New Year’s Eve (just like other holidays) can trigger renewed feelings of loss in those who have already begun the long, long, long process of learning to live while grieving loved ones. From traditions like setting New Year’s resolutions (a.k.a. “goals”), to swapping “Who were you with when the ball dropped?” stories, to serving special New Year’s Day foods (like black-eyed peas), the day — and day after — can be full of painful reminders of grief.

The end of one year and the beginning of another can be difficult for those mourning with anticipated grief, too. If your friends are facing a terminal illness or condition for themselves or their loved one, the imminence of knowing the coming year might — or will — be their last together can be overwhelming.

How can you help your grieving friends through the New Year?

  • Acknowledge that you know this holiday, like others, marks a difficult time of year.  Whether the loss is recently raw or it has been years, with the ending/beginning nature of this worldwide change from one year to the next, New Year’s Eve and Day have the potential to reopen grief’s partly- or not-yet-healed wounds.
  • Invite your grieving friends to join you in your celebration or commemoration of the event. Let them know you’d like them to be with you for your sake (“I’d like your company”) as well as for their sakes (“I’d like y’all to join me so you won’t have to be alone or plan anything yourselves”). If they decline at once, let them know the invitation remains open in case circumstances change or they change their minds.
  • Repeat the invitation, but don’t push. Offer your grieving friends the choice, but respect that they will know best for themselves whether solitude or socializing will help. For some of my widowed friends, going to friends’ homes to ring in the New Year lifted their spirits better than staying home. For me, some years I’ve needed to stay home watching chick flicks with my daughters and other years I’ve preferred to go out dancing with friends.
  • Offer an oasis. Sometimes the bereaved can happily engage with others one moment and feel hit by tsunami-sized waves of grief the next. Let your grieving guest(s) know ahead of time where they can go if they need a few moments to themselves. (Sometimes a private cry is priceless for channeling emotions.)

If your mourning friends choose not to join you, you can still offer an oasis of listening, awareness, and concern. When “life moves on” for the rest of the world on January 1st (and by the way, do NOT ever tell mourners “life moves on”), let your friends know that you know that this year will be different and that you will still be there for them.

___

For more on this topic, see Don’t Say “Happy New Year” after a Death.