hospice

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.

11/17/2015

Kids after Death, Children’s Grief Awareness Day

Children’s Grief Awareness Day is the third Thursday each November. As people in the U.S. gear up for the following week’s Thanksgiving celebrations, the day is meant to raise awareness that the holiday season can be especially difficult for children who are grieving.

HOPE the Butterfly image courtesy of http://www.childrensgriefawarenessday.org/cgad2/images/resources/hope.jpg

It’s a time of year that’s hard enough for bereaved adults, and kids’ feelings run just as deep. However, children lack the ability to draw on decades of emotional (and verbal) experience to help them recognize and process those feelings.

It should be obvious that children need emotional support as they mourn. It should be obvious that as children grow up, milestone events sometimes prompt as much pain over their absent loved one as pride in their own accomplishment. It should be obvious that anniversaries and holidays and yearly commemorations are forever altered when a loved one is lost.

Sadly, sometimes even professionals get it wrong.

[A friend gave permission to tell this true incident, but I’ve omitted details for the privacy of those involved:]

Two months before the first anniversary of one parent’s death (prior to the start of the holiday season), the surviving parent of a high school student asked for a meeting with school counselors and teachers. The desperate parent sought ways to help the grieving student re-engage in education while the teenager worked through the natural ups and downs of mourning.

Two months after the first anniversary,  when the long-sought meeting was finally convened (amid a season of holiday decorations everywhere), the situation had grown more dire.

The school psychologist had not yet met the surviving parent — or student — until they sat across from the table that day. The school system employee opened a file and scanned it for about three seconds. She sighed, closed the file, and said, “I see your grades and attendance started slipping about this time last year. What happened?”

The parent and the student were too stunned to answer.

The school social worker (who had met the parent and the student earlier) leaned forward. As if cuing in her colleague via a stage whisper, the social worker relayed that the other parent died the previous year.

The school psychologist’s response was, “That was last year. What’s the problem this year?”

As if the parent’s death and subsequent absence no longer mattered.

Thank goodness other professionals get it right.

My children were young when my mother died. We’d lived in Mom and Dad’s house for two years, caring for her while he worked and she recovered from cancer treatment, and we stayed with them while she endured to the end of its return. So my daughters were very close to their grandma. Even as Mom’s health declined, she loved having her grandchildren snuggle up beside her for a story or a cuddle or “commersations” about their day.

The hospice nurses in and out of the house were attentive to my kids, even though my mother was their patient. They always bent down at eye level and spoke to my oldest. They talked with her about how they were taking care of Grandma, not to “make her better” but to help her feel as comfortable as she could.

After Mom died, the nurses cried with us. They gave our daughters each a small toy — a thing they could hold onto while part of their lives and household slipped from them.

One hospice nurse and counselor came back later to show the children they were still remembered — and to acknowledge they knew the girls “still” missed their grandmother.

These professionals’ one-on-one attentions reassured my daughters … and therefore eased one corner of my own bereavement after Mom’s death.

And therein lies all the difference.

If you know a child who has lost a parent, sibling, or other beloved one, please reach out. Acknowledge the loss. Ask the child’s parent or guardian how you can offer support.

Please be aware.

And wear blue in support of #childgriefday this Thursday. Learn more by visiting
http://www.childrensgriefawarenessday.org/.

02/21/2014

Ethan Rediske Act Supports My Grieving Friend and Many Other Families

When a grieving friend asks for your help, give it. Until now, I’ve not shared this growing media story here, though I’ve linked Facebook and Twitter accounts to published articles;  until now it’s been too personal for me to publicize in an ordinary post.

Ethan Rediske (photo used by permission of his mother, Andrea Rediske) #EthansAct

Ethan Rediske (photo used by permission of his mother, Andrea Rediske) #EthansAct

My friend’s son, Ethan Rediske, died February 7. Today his mother, Andrea Rediske, asked her friends to share this plea from her Facebook wall:

“Today, members of teacher and education activist groups all over the country are changing their Facebook profile picture to Ethan’s picture in support of Ethan’s Act and the battle we’re fighting for students with disabilities and students suffering as the result of high-stakes standardized testing. I’m unbelievably grateful for the outpouring of love and support. Thank you all for taking up this dragon-slaying sword for us so that we can have some time to rest and grieve. Bless you all.” #EthansAct

Why is this a national issue and not just a Florida concern? Andrea also said this:

“There have been whisperings that part of the reason why the state of Florida was recalcitrant to give Ethan and other children like him a waiver from standardized testing is because the federal government withholds money for each student granted a waiver. This suggests that the problem of disabled children being forced to take standardized tests is not just an issue in our state and district — it goes all the way to the federal level. We have to fight this with a grassroots effort. No family should have to go through what we have gone through. Help us carry on Ethan’s legacy by writing to your school district, your state legislators, and your congressmen and congresswomen to change these laws and policies that abuse the most helpless under their stewardship. I will continue to fight, to talk to every news outlet that I can, and to lobby in any way that I can to expose this travesty. Please help us in this fight.” #EthansAct #theypissedoffthewrongmommy

Though I’ve suffered my own losses in life, I cannot fathom the depth of my friend’s pain. Nothing I can do will lessen it. However, in sharing her plea, I can help her spare other families the agonies forced on hers by senseless regulations.

Please join us in sharing the Rediskes’ story and in supporting HB 895, The Ethan Rediske Act.

___

To learn more about Ethan’s story and why change is so important, check out the news articles linked below: