Jo Firestone mourns the loss of a beloved friend, and recommends not reading that Joan Didion book. Once again, we see how people struggle to offer support -- and to accept it.

Someone is gone. Perhaps this is the first year you had to get used to it, or maybe you’ve had years of practice with how the calendar keeps going, and it’s still hard.

Either way, for right now I recommend getting in the bath.

Lie faceup if you want. I prefer facedown, coming up for air every few seconds like a nervous snorkeler. On a personal note, my bathtub is short, so I am forced to choose between submerging the top half of my body or submerging the bottom half. I always choose the top half, leaving my legs out of the water, looking like the first dolphin to live in an apartment.

Now onto a jigsaw puzzle, or doodling, or just stacking your mail into a Jenga-like pile. Anything that uses your hands more than your head. Stay in your robe all day, or if that’s too warm, try a shirt with no pants, like Winnie the Pooh. Eat something. Tell one of those people who keep saying, “Let me know if there’s anything I can do” that there is something they can do and it’s to bring you more pretzels — the good kind, or really any kind but the ones you bought last time, because those were bad. How can they make a pretzel bad? I don’t know, but they can, and they did and last time you bought them.

Tell Me One More Time What to Do About Grief

Don't Tell Mourners to "Stay Strong" -- Another in the What Not To Say To Sad People List

Megan Devine says:

It isn’t easy, but if we really want to support a grieving person, we’ve got to listen to his or her pain, rather than try to correct it. Pain, allowed expression, doesn’t have to turn in on itself. Given room — and validation — grief finds its right place, alongside the life that is built in the wake of loss.

'Stay Strong,' And Other Useless Drivel We Tell The Grieving

Peter Rosenberger: There Used to be M&M's

Many thanks to Peter Rosenberger, author of 7 Caregiver Landmines and How to Avoid Them for permission to publish this touching article about the bittersweet experience of caring for his father. "I’ve often heard that, “… There’s no pain like watching your children hurt.” Watching your parents hurt must run a close second." As the Talmud says, "When the father helps the son, both laugh. When the son helps the father, both cry."

There used to be M&M’s

For as long as I can remember, when my father came home from Reserve duty in the military, he brought each of my brothers and my sister and me a pack of M&M’s. Stretching past his military service as a chaplain, he and my mother extended the treats to when we returned home from school. Each time we arrived with our luggage (sometimes filled with dirty laundry), we’d walk into our rooms to find a bag of M&M’s waiting on the pillow.

When they moved away from the house where they raised five sons and a daughter, their new home carried the tradition. Bringing our wives, then children, and now even our grandchildren, the familiar brown-bagged treats (sometimes the yellow bags of peanut M&M’s) from my parents awaited every family member.

Except this year.

Nearly succumbing to congestive heart failure, my mother endured a dramatic and difficult year — as did my father. A U.S. Navy chaplain (Captain) and pastor for nearly 60 years, my father stepped into the role of caregiver for the first time, and I watched the process take a toll on him.

It felt odd. While I’ve cared for my wife with severe disabilities for more than 33 years, I’ve never seen my dad in this role. I found myself placing a hand on his shoulder much like he did for me many times following my wife’s now 80-plus operations. He sat with me in countless ICU’s, hospital rooms, and waiting rooms. Now I sat with him.

His seasoned faith remains intact and strong, yet he struggled to wrap his mind around the relentless assault of continued medical setbacks. With the same gentleness and encouragement he offered to me over decades of caregiving, I returned the favor.

I’ve often heard that, “… There’s no pain like watching your children hurt.” Watching your parents hurt must run a close second.

With a herculean effort by medical staff, along with my mother’s grit, she pulled through. While not where she’d like to be, she’s further than most expected. After a couple of months away from them, we returned to their home for Thanksgiving. They looked tired, older, but optimistic. The family pulled together, and the house looked great. The only significant difference I noticed was an oxygen tank in their bedroom. 

Yet for the first time in my memory, no M&M’s waited on the pillows. The absence of those treats indicates a passage, and a farewell to parts of who they used to be. Their home stands in a heavily wooded area of upstate South Carolina. As we prepared for the holiday, the trees surrounding their home continued shedding an entire color palate of leaves. The loveliness of autumn is a sad one that brushes hearts the same way the wind grazes branches.

So it is when watching those who loomed large in our lives diminish in vigor, but not in beauty. As many will attest, it’s the shedding of smaller things — the wisps of common things taken for granted — that often bring a tear.

Deep feelings often rise to the surface faster during holidays. For many Americans, a difficult season of slow goodbyes, bittersweet celebrations, and, for some, the ache of absence. 

Yet, not all is sorrow. Slowing our lifestyles to the pace of our hearts, we can cling to each other a bit tighter. After dinner, we can pause a little longer at the table — or sit quietly for an extra couple of minutes with those we love. If a chair is empty, we can choose to fill that seat with cherished memories. 

The treats I’ve enjoyed for a lifetime no longer await me, but the loving hands that placed them are still here to hold. Placing that candy on their pillows instead, I now possess a greater understanding of the joy they both shared — for a lifetime. 

A joy in something as simple as … a bag of M&M’s.

Peter Rosenberger hosts a radio program for family caregivers broadcast weekly from Nashville, TN on more than 200 stations. He has served as a caregiver for his wife Gracie, who has lived with severe disabilities for more than 30 years. His new book is 7 Caregiver Landmines and How You Can Avoid Them. @hope4caregiver

Jon Pavolvitz on the Hidden Grief Anniversaries

Most people think that grieving is about the big annual events—about Christmases and birthdays and the like, and of course it is. But the brutal truth (one that only those who continue to live after someone dear to them is gone can rightly fathom), is that these other quiet anniversaries are equally devastating and far more frequent.

In the wake of losing a loved one, everything in your life becomes a potential surprise memorial. Out of nowhere you are broadsided by days of the week or times of day or numbers on the calendar, or songs that were playing or cologne you were wearing or the feel of the grass beneath your knees as you fell at the news. These seemingly incessant reminders force you once again to observe the loss anew.

And since these days and times and triggers aren’t obvious to most people in our lives (and since we don’t have the time or the words to describe them all), they are usually unaware of just how much and just how often we mourn. Even those who are closest to us and care for us greatly remain largely oblivious to our recurring sadness. Our grief can feel like a very lonely journey, which in many ways it is because it is specific to us and to the one we’ve lost. It is a customized but hidden wound.

Acknowledging our Grief Anniversaries

Peter Rosenberger: The Orientation and Disorientation of Caregivers

Many thanks to Peter Rosenberger, author of 7 Caregiver Landmines and How to Avoid Them, for permission to publish this insightful article.  "Suffering and sorrow tend to put differences into perspective."

The Orientation and Disorientation of Caregivers

Walking into Waffle House for breakfast, I held the door for two men. The younger man awkwardly helped his older companion with a walker and oxygen tank. No stranger to these things myself, I waited for several moments while nodding to the younger man. Mustering a sad smile, he expressed his gratitude for my patience.

As they slowly exited, I stepped in—only to be stopped by one of the longtime servers. “Peter, go out there and talk to that young man! His name is Randy, and I ain’t serving you breakfast ‘til you do,” she stated forcefully.

Decades of Waffle House visits with her taught me that disobedience usually involved a tongue-lashing. And, she really wouldn’t serve me until I talked with him.

Dutifully returning to the parking lot, I approached Randy, stuck my hand out and said, “I was told to come out here and talk with you—and Judy won’t serve me breakfast until I do. What’s going on?”

Randy’s eyes instantly filled with tears while sharing that this was their last breakfast out before hospice came that afternoon for his partner. Listening, I understood why Judy sent me back to the parking lot.

I speak fluent caregiver.

Randy added, “We’ve been together for 24 years, and I am just so upset. I don’t know what to do. I’m afraid I’ll go into my room and cry—and won’t be able to stop.”

Chatting for a while, as Randy’s companion quietly sat in the car with the engine running, I offered things learned from a lifetime of caregiving for my wife who lives with severe disabilities. Giving Randy my card and sharing he could call anytime, I prayed with him, hugged him, and watched him breathe a bit easier. Returning to the restaurant, Judy, with brimming eyes, nodded her thanks and served me breakfast.

Strengthening and encouraging my fellow caregivers serves as one of my deepest passions. I understand the brutality of the journey in ways few do. I also understand that the caregiving burden borne in the gay community is all too often compounded by judgment from people of faith. People who share my faith.

Caregiving respects no sexual preference, creed, politics, religion, or race. The harshness of caregiving saves all its assaults…to wage on the bonds of love. In the face of a chronic illness or disability, that love isn’t sexual or about sexual orientation. The love compelling one person to put themselves between a vulnerable loved one and even worse disaster—is something far different and worthy of respect.

Suffering and sorrow tend to put differences into perspective. The ministry of grace vividly displayed from the cross of Christ, can flow from us without this incessant need to fix, change, or dispute those who live differently.

In that parking lot, Randy and I were not gay versus straight. Nor were our doctrines and creeds discussed. While I remain devoutly evangelical with deep convictions, I never asked Randy’s beliefs. I just saw a fellow caregiver grieving as he ministered to a suffering loved one. Randy and I have that in common.

Caregivers struggle. They deserve care—not judgment for their fears, mistakes, or even their lifestyle. No one has ever argued me into a relationship. But there are those who loved me into one.

When the AIDS epidemic crashed upon society, all too many in the gay community were shunned. In the process, a vast number suffered with a horrific disease without the comfort of Christian ministry. That tragedy can’t be undone. Yet, that same community stands in need now, as they grieve while caring for aging and disabled loved ones.

Acceptance is not agreement. In order to care for someone, one is not bound to condone a lifestyle operating in contrast to Scripture. Yet, ministering hands reached into my grief and trauma to help me get to safer ground. I would be a poor steward of that help …that grace …if I didn’t offer it to others as they journey down the heartbreaking path of a caregiver.

While I’ve learned to speak fluent “caregiver,” it’s my Savior’s native tongue.

###




Peter Rosenberger hosts a radio program for family caregivers broadcast weekly from Nashville, TN on more than 200 stations. He has served as a caregiver for his wife Gracie, who has lived with severe disabilities for more than 30 years. His new book, 7 Caregiver Landmines and How You Can Avoid Them releases nationally Fall 2018. @hope4caregiver

Sandra Bullock on How She Handled Losing Her Dad and Dogs Within Weeks

The First Holiday Without a Loved One -- The Atlantic

After Maryanne Pope’s husband, John, died in September 2000, the first Christmas without him, just a few months later, was a struggle. She used to cherish decorating a Christmas tree in her Calgary, Canada, home, but that year, there was no joy to be found.

“Putting up a tree didn’t feel right to me. There was absolutely nothing to celebrate,” says Pope, the author of A Widow’s Awakening. “Plus, I may have had the intuitive wisdom to know that unpacking all the familiar decorations would be a disaster.” She tried again the next year, but “every ornament was like unpacking a land mine,” she says. “The memories were extremely painful.”

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Instead, she tried something new.

“I put up a string of white lights on the hearth of our fireplace, where there were some photographs of John,” she says. “I did Christmas very differently.”

As the years went by, Christmas got a little easier to bear, and she began to love the season again, especially the lights she would always put up in honor of her husband. “I finally began to realize that I was going to have to toss the traditions that were causing me even more anguish,” she says. “I had to learn how to set boundaries so that I could celebrate the Christmas season the way I wanted to.”

The First Holiday Without a Loved One

Always Go to the Funeral

Dierdre Sullivan explains on NPR why it matters that you are there when someone dies.

I believe in always going to the funeral. My father taught me that.

The first time he said it directly to me, I was 16 and trying to get out of going to calling hours for Miss Emerson, my old fifth grade math teacher. I did not want to go. My father was unequivocal. "Dee," he said, "you're going. Always go to the funeral. Do it for the family."

I once wrote about why it is important to go to weddings. A lot of the reasons are the same. Sullivan writes:

"Always go to the funeral" means that I have to do the right thing when I really, really don't feel like it. I have to remind myself of it when I could make some small gesture, but I don't really have to and I definitely don't want to. I'm talking about those things that represent only inconvenience to me, but the world to the other guy. You know, the painfully under-attended birthday party. The hospital visit during happy hour. The Shiva call for one of my ex's uncles. In my humdrum life, the daily battle hasn't been good versus evil. It's hardly so epic. Most days, my real battle is doing good versus doing nothing.

In going to funerals, I've come to believe that while I wait to make a grand heroic gesture, I should just stick to the small inconveniences that let me share in life's inevitable, occasional calamity.

I Heard Your Voice in the Wind Today -- poem of remembrence

I heard your voice in the wind today
and I turned to see your face;
The warmth of the wind caressed me
as I stood silently in place.

I felt your touch in the sun today
as its warmth filled the sky;
I closed my eyes for your embrace
and my spirit soared high.

I saw your eyes in the window pane
as I watched the falling rain;
It seemed as each raindrop fell
it quietly said your name.

I held you close in my heart today
it made me feel complete;
You may have died...but you are not gone
you will always be a part of me.

As long as the sun shines...
the wind blows...
the rain falls...
You will live on inside of me forever
for that is all my heart knows.

Who Cares for the Carer? From Rob Lowe

Taking care of my mother was scary, unbelievably stressful and painful. It was also a time to be with her in a way that might never have happened under other circumstances. When she passed in 2003, I felt that we’d had the talks we needed to have, that we’d spent the time together we needed to spend. I have friends who’ve been through deaths of parents and they feel cheated; if only they’d been able to tell them how much they loved them, if only they’d done this or that. One of the hidden gifts of being a caregiver is that you’re with them. You’re able to do and say all of those things in its proper time.So be present for it. There is every reason to believe that you will look back on this chapter with satisfaction. In the meantime, don’t hesitate to get help. That’s why I’ve partnered with EMD Serono and EmbracingCarers.com, where you’ll find invaluable information regarding everything you’ll be, or are, going through.

Rob Lowe in Newsweek

Life lessons from the people we call to lay someone to rest -- Washington Post

The Washington Post Magazine has a superb series of profiles of people who provide support and comfort in death, from the gravestone carver to the bagpiper, to the casket-maker and the florist. A home funeral expert says:

We’re in a culture that doesn’t really want to deal with death that much. But death can be a meaningful experience that families share. It allows the grief to be hands-on. And what people don’t realize is that they can do more by themselves than they thought. In some states you can be your own funeral director. I’ve become trained as a home funeral guide, so I can guide other people through this: bathing the body, keeping the body preserved for a few hours or overnight before it’s moved. There’s a way to use dry ice to cool the body down so it doesn’t begin to decompose. I’m there as a support, as a counselor, somebody to reassure you that you’re doing fine.

Dying Well

Dr. Ira Byock "is not in the euthanasia camp — dying quicker doesn’t mean dying better. His pitch, instead: a menu of a few different things, the most compelling being 'psychedelic-assisted therapies.'”

His prescriptions for the medical-industrial complex now include listening to patients, formulating care plans for disease and symptom treatments, helping them sleep, helping them move their bowels, addressing family needs and perhaps most importantly training doctors to do this early. So medical schools have to teach about caring for seriously ill or dying people up to and including the ethics of decision making, and should face financial penalties if they fail to do so. “Most med schools dedicate one month for pregnancy care even if the doctors in question won’t end up delivering babies,” Byock says. ”But 70 percent of physicians will be seeing sick or dying people.”

Byock talks about learning to listen, being sensitive to older patient needs — and then comes the needle-scratching-across-the record moment when he brings up psychedelics.

“I’m a child of the ’60s,” Byock laughs. “And there are legitimate medical uses of psychedelics when we’re talking about end-of-life wellbeing issues....
“This is not just about avoiding suffering,” Byock said. “I’m in it for the joy. But, I mean, we’re all going to die. Best we do so the best ways we can.”

Byock and an ad hoc group of like-minded experts propose the following public policy planks to improve end-of-life care:

Raise training standards for physicians, nurses and allied clinicians in geriatrics, palliative care and related topics.
Establish minimum program standards for “palliative care” (disciplines, staffing, services, hours).
Require palliative care consultation before high-risk surgery or low-yield treatments for patients with advanced age or physiologic frailty.
Eliminate the requirement to forego disease treatments to receive hospice care for comfort, quality of life and family support.
Long-term care: Require adequate staffing of nurses and aides.
Long-term care: Require living wages and benefits for aide-level workers.
Annually revoke licenses of nursing homes in lowest 10 percent of quality and resident safety scores.
Award new licenses only to nursing homes qualifying as Greenhouse, Planetree or Beatitude-style models.

Going Out on a High: the Doctor Advocating LSD for Dying People

Social Media is Structured Around Good News and Can Be Devastating For Those Who Are Grieving

On Slate, Shannon Palus writes about the agonizing algorithms that keep sending ads for baby products to the mother of a child who was stillborn.

Taking time to process deep personal tragedy is one of the most trying tasks of being human. It is also an action that is inherently at odds with social media. Not in the content we post, necessarily—people like Brockell have bravely demonstrated that public platforms can be a place to share and connect over the bad stuff, too. But in the sense that the platforms themselves exist, ultimately, not to highlight and facilitate our social lives, but to profit off of them.

They don’t really have any concrete incentives to handle grief with care, and it shows. After posting about her stillborn son, Brockell continued to see ads for all manner of baby things. “[L]et me tell you what social media is like when you finally come home from the hospital with the emptiest arms in the world, after you’ve spent days sobbing in bed, and pick up your phone for a couple minutes of distraction before the next wail,” she wrote in a viral tweet Tuesday, also published in the Washington Post, addressed to tech companies. “It’s exactly, crushingly, the same as it was when your baby was still alive.”

They Call It "Therapeutic Lying" -- Deceiving a Dementia Patient into Treatment

We’ve tricked Mom into coming here because she’s not safe living alone. Moments before, we set up her room with photos and labeled her clothing. Nurses recommended we stay out of sight. I feel like the worst daughter.

But according to doctors and social workers, we’re doing the most caring thing.

The Dementia Heist

The Neuroscience of Grief

“In the best case scenario, the death of a parent is anticipated and there is time for families to prepare for the loss, say their goodbyes, and surround themselves with support,” Dr. Nikole Benders-Hadi, a psychiatrist with Doctor On Demand told Fatherly. “In cases where a death is unexpected, such as with an acute illness or traumatic accident, adult children may remain in the denial and anger phases of the loss for extended periods of time…[leading to] diagnosis of Major Depressive Disorder or even PTSD, if trauma is involved.”

No number of brain imaging studies or psychological trend analyses can truly capture the unique experience of grief. But there are a handful of constants in the scientific literature because all fully developed human brains are wired to respond to emotional pain with the same basic pathways.

Studies have implicated the posterior cingulate cortex, frontal cortex, and cerebellum brain regions in grief processing. These regions are involved in retrieving memories and dwelling on the past — but, in a cruel twist of neuroanatomy, they’re also involved in regulating sleep and appetite. “This might provide some explanation for the different and unique responses to grief and loss,” Jumoke Omojola, a clinical social worker in Omaha, Nebraska, told Fatherly. “Physiological changes might include headaches, stomach aches, dizziness, tightness in the chest too much sleep, too little sleep, overeating, or lack of appetite.”

The Death of a Parent Affects Even Grown Children Psychologically and Physically

The Death Disrupters

Andy Wright on six people who are changing the way we talk about death and the way we die. A death doula "provides a suite of services that includes getting financial affairs in order, making health-care decisions, even identifying the specific sounds and smells clients want at their deathbeds. Arthur also works with her clients’ families, providing support throughout the dying process and helping them wrap up affairs afterward." The Final Exit Network "provides education and support for competent adults suffering from terminal illness, dementia, or chronic or progressive physical disabilities who choose to end their lives." "Recomposition" is a method of burial, "in which bodies are placed in vessels with materials like straw, wood chips, and alfalfa. Tiny microbes that live in the human body go to work, raising the temperature inside and breaking everything down, including teeth and bones. After a month, the result is a rich topsoil that can be returned to the earth. It’s an accelerated version of a natural process, [founder Katrina] Spade says."

Chaplin David W. Peters says,

"People have very strong opinions about what they want their funeral to be like, and Peters encourages them to pick out the hymns and scripture readings they want performed ahead of time. “It helps people prepare for death,” he says, “if they have a say in what happens to them after they die.”

And Deathlab re-imagines the urban cemetery.

‘I was widowed at 23, young people need to talk about death’

Amy Molloy writes about marrying a man at age 23, knowing he has only weeks to live.

Do you know what to say when a friend’s loved one dies? Have you thought about the day your own parent, partner or best friend may no longer be visible? How would you discuss it, in a way that would be supportive, constructive, and even light-hearted?

If you don’t know the answer, you’re not alone.

A new study from the Royal College of Physicians in the UK has urged medical professionals to improve their bedside manner when it comes to discussing death, after identifying that “timely, honest conversations” about patients’ futures are not happening. However it’s not only doctors who need to become more comfortable with these conversations.

It’s been suggested that millennials are the generation most fearful of death, unlike our grandparents, raised through world wars, who learnt that life can be short. As medicine advances and life expectancy increases, we prefer to think of death as our “future self’s problem”.

But is postponing the inevitable increasing our terror of it?

Amy Molloy in The Amateursguide

New from the BBC: Care

Celete Roberge Sculpture Shows the Weight of Grief

Celeste Roberge

Sometimes Being Present is the Greatest Gift You Can Give

I really loved this very wise essay by Parker J. Palmer about what to say to support someone who is dealing with health problems or confronting mortality. It's important to suppress the natural human impulse to give advice. We want to be helpful and we want to reassure ourselves more than the person we are trying to comfort that we have some sense of control. Don't. Just listen.

I asked how he’d been feeling recently — he said he’d been feeling afraid. “Do you want to talk about your fear?”, I asked. He talked while I listened and asked a few more questions. When we were done, he told me that some measure of peace had returned. It was a peace that had come from within him, not from anything I’d said. I’d simply helped clear some rubble that blocked his access to his own soul.

Living with Dementia -- Making the Most of the Moment

A woman diagnosed with dementia has made sure that all the legal paperwork has been taken care of, participates in an online support group, and has created a "dementia daze" blog to help others.

A key to prolonging independence, participants told her, is to recognize the triggers that aggravate her symptoms and to adjust her routine to head them off. One strategy: Because noise in a grocery store can cause confusion, Mrs. Scherrer shops in the early morning, when the store is quieter.

Most important, she said, the group taught her she “can still live a meaningful, happy life, at least for now.”

To that end, Mrs. Scherrer, of Oley, Pa., writes a blog that provides advice on living with dementia, and she is a mentor to others with cognitive impairments. As a member of the advisory board of the Dementia Action Alliance, an advocacy group, she speaks at conferences of policymakers and neurologists, suggesting ways they can arrange for better, and more sensitive, care.

Mrs. Scherrer has bad days when she is “crying because I don’t know where I am,” she said, but “I have a passion now, and that passion keeps me going.”

Leading an Active Life With a Diagnosis of Dementia

A Doctor Needs to Know Who Has End-of-Life Say

“I just want to be clear on who has the final say on life support.”

The words cut neatly through a conversation which has barely moved beyond my perfunctory knock on the door frame of your hospital ward room. They don’t come from you—how could they? Unlike your drawn-out, mumbled monosyllables, they are brittle with impatience, as though they are responding to the folded-up patient list in my back pocket. “Clarify goals of care and resuscitation status,” it says, circled and underlined next to your name, your age, and your incurable disease. It means that I am going to ask for permission to focus on comfort and dignity instead of scans and numbers. I will go beyond asking, and will recommend this approach. The words that are still ringing in the air? They tell me we are going to disagree.

I pause, not because this situation is uncommon but because it is easier to let my gaze linger on details than to face the difficult conversation ahead: The woman sitting silently next to you, playing with a wedding band too large for your chemotherapy-thinned fingers. The scar on your head where, during more hopeful days, your surgeons tried to remove the part of your brain that is now going to kill you. The toy lion nestled next to you, guarding you on behalf of your children who are “too young to visit.” They all scream the unfairness of your presence in this room.

Ashamed at delaying, I turn to your older sister. The spoken words were hers, and she is now defiantly holding my gaze, ready to record my answer in the open notebook in her lap. She knows unfairness intimately, and I am part of a now-familiar pattern. Your surgeons will not operate again. Your oncologists will not try more chemotherapy. Your neurologist will add no more medications for the seizures that will come back and possibly never stop. I do not think that you would benefit from “resuscitation” or “life support.” Unlike the others, however, I can be forced to provide them. The purpose of your sister’s words is to “be clear” that she knows this....I am angry at a health care system that has left you and your family feeling lost, suspicious and defensive. I am angry at a legal system that has tried to solve this problem by giving you, and by extension your family, apparently unlimited power at the end of your life without warning you that it is mostly the power to choose more suffering. It is a toxic combination.

Vlad Dragan I Just Want to Be Clear on Who Has the Final Say on Life Support