There were no needles, no tubes, no catheters and no machines. My father-in-law’s death from cancer was as peaceful, as possible.
By Maria Otero
Rather than spend his last days in a cold hospital room surrounded by strangers, Pablo died March 8, 2018, at home in hospice. He was surrounded by his children, grandchildren listening to rancheras (folk songs) and corridos (ballads) by Mexican singers Vicente Fernandez, Rocio Durcal, including his favorite tune by Jose Alfredo Jimenez’s ranchera La Mano de Dios (God’s Hand) as he held my husband Jorge’s hand in prayer.
Pablo was a former migrant worker, a Catholic, grounded to his faith to the very end. He was going through excruciating pain in his back and bones. In less than four weeks, we went from celebrating his 79th birthday to mourning his painful death from cancer.
My suegro (father-in-law) had been dealing with some other kind of unrelated health issues for probably a year. He had endured agonizing test after test, and he was a trooper. We found out that he had cancer, and it was shocking. Some of us were in disbelief, maybe denial, so we couldn’t really grasp that we have limited time with him.
Doctors gave us two options: A biopsy to determine where the cancer was located or hospice.
We chose hospice.
November is National Hospice and Palliative Care Month and an opportune time to bring to light this option at the end of life. It is also a good time to clear out some of the misconceptions among the Latino/Hispanic community of this service that provides compassionate medical care at the end of life.
Hospice is not a physical location. It is an interdisciplinary team approach to treatment that includes expert medical care, comprehensive pain management, and emotional and spiritual support. This service enables patients and families to focus on living as fully as possible despite a life-limiting illness. Caring for the whole person allows the hospice team to address each patient’s unique needs and challenges. This includes understanding and respecting each patient’s culture, family traditions and beliefs.
Hospice is almost always provided in the patient’s home, but arrangements can be made for it to be provided wherever the patient is most comfortable, such as in the home of a family member or friend. Hospice services are also provided in hospice facilities, skilled nursing facilities, assisted living facilities, hospitals and long-term care facilities.
Compassion & Choices created a free online bilingual COVID-19 toolkit available at CompassionAndChoices.org to help people understand their end-of-life care options.
Creating an advance directive is something every person should do.
And there is–literally–not a more critical time to do it.
It has been almost two years since Grandpa Pablo closed his eyes forever. Just this month, we honored my suegro’s memory with a beautiful altar during our annual Day of Dead celebration. I hugged my husband and reminded him of those last precious and blessed moments we spent at home with his dad.
Hospice was the best choice we made for my suegro. They made sure we got the emotional and calming support needed during those very tough last five weeks. Our family cried in silence as my husband hugged and kissed his father’s forehead for the last time.
My suegro took his last breath that Thursday night at 10:12 p.m. He knew he was loved. And we were at peace.
No, I’m not suffering from a terminal disease (as far as I know). Nor have I been infected with the novel coronavirus that causes covid-19. But thanks mainly to the pandemic I have been motivated to complete about 90 percent of the necessary steps for end-of-life planning. I have taken note of the nearly 202,000 Americans who have died unexpectedly from covid-19 or its complications in the past seven months.
Most of these people, it’s fair to say, were not planning on a sudden death. Many died alone in hospitals, and too often they didn’t have the opportunity to bid loved ones farewell. Caring.com reported that before the pandemic hit, fewer than half those 55 and older had completed estate-planning documents (such as a will, a living will, and designating a medical power of attorney). Among those 18 to 34, it was a paltry 16 percent.
The No. 1 reason for everyone: I haven’t gotten around to it.
Covid-19 has claimed the lives of several people I know in recent months; sadly, they weren’t the only deaths in my personal and aging circle. Barry Owen, 67, a friend and former partner, died of pancreatic cancer in May, a year after being diagnosed. Shortly after being told he had Stage 4 of the disease, he posted on his Caring Bridge site, “To borrow a line from ‘Grass,’ a favorite childhood poem by Carl Sandburg: ‘What place is this? Where are we now?’ ”
That question — “Where are we now?” — resonated for me as the pandemic spread unabated. Who knows when the bell will toll for thee?
Actually, I’m not alone in having jump-started my death planning.
Recently, the New York Times reported on just such a “boom” due to the pandemic. So many questions. Who do I want to act as my medical power of attorney? Why do I need a living will? Do I want to be cremated or not? What songs do I want played at my funeral?
Not surprisingly, there are now new Web services — with checklists — specifically for this kind of planning. One of them, Lantern, whose mission is to be “the single source of guidance for navigating life before and after a death,” reported a more than 120 percent increase in users since the beginning of the pandemic.
With the obituary pages growing ever thicker these days, I’m reminded of the nadir of the HIV epidemic when gay men dropped out of sight only to turn up in a death notice soon after. In 1986, at age 29, I’d been given an AIDS diagnosis, then synonymous with a death sentence. Fortunately, it turned out the doctors had erred in making my diagnosis. But during those weeks when I feared dying, I began to make an end-of-life plan.
I didn’t get far. I got only as far as engaging a lawyer to draw up a will when I learned that my lesion was not Kaposi’s sarcoma, one of the cancers associated with AIDS. No longer facing an untimely death, I put my head back in the sand — which is to say I stopped responding to his emails — and the lawyer actually fired me as an unresponsive client. When I pleaded for one more chance, he gave it to me and I completed my first “Last Will and Testament,” and a living will, too, that detailed what medical treatments I wanted — and would forgo — if I could no longer give consent myself.
In 2006, I added a codicil to that first will when I bought a house with my partner, Jim. Oh, and I designated him as my medical power of attorney, bumping my sister down to the “backup” position.
Still, as I crossed the threshold to 50 and then again to 60, I made no other plans. In 2018, a year after Jim and I legally separated (we’d married in 2013), a new lawyer castigated me for taking no action. By leaving things as they were, my soon-to-be-ex would still inherit my part of our house equity (rather than my siblings) and he’d be making life and death decisions for me in the event I was incapacitated. (Yikes!)
Again, I found myself stuck in denial — over the failed marriage, and that like everyone else I’d die one day, too.
By nature I am a procrastinator, but this pandemic — all those deaths — has forced a new reality on me. In recent months, I’ve taken various steps to make sure I’m ready — or at least “readier” — for what my friend and literary agent Richard Pine likes to call, “The End.”
My will and living will are now updated. (I got rid of all mention of my ex in estate finances or end-of-life decisions.) In our family cemetery plot, I’ve chosen my place, and there are new notes in a manila folder for a memorial service and an obituary, although I’ve not actually written a draft like other really well-prepared friends I know. With a nod to Leona Helmsley and her much-spoiled Maltese, my new puppy will go to previously agreed-on guardians, along with a crate, some kibble and some money to cover future costs.
If anything, like others these days, I’ve come to understand the importance of getting one’s affairs in order. Greg Brock, 67 and a retired journalist, frets about having unfinished business, especially after his sister “dropped dead” a year ago.
“It was a shock, and her children were left with so many headaches with her estate, including no funeral plans,” he said.
Since then Brock has vowed to get his “act together, starting with the end.” He has bought a gravesite and is now ordering the headstone, which he admits “will be weird.” He hopes that looking at his headstone will spur him on “to organize other aspects of my life.” Good luck, friend.
I’m impressed by those I know who have such lofty but wise intentions: To set things in order sooner than later. But “why do today what I can do tomorrow?” has long been one of my favorite mantras.
Well, I’ve now ditched that aphorism, thanks to Marie Kondo, author of the best-selling “The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing.” I’ve gone though much of my stuff — applying her “delight test” — jettisoning and donating shirts and sheets, pots and pans, and bed linens and bandannas. (Although, had I known the pandemic would be still with us, I would have saved all those old bandannas to be used as masks/face coverings.)
The pandemic has also prompted me to say things I might not otherwise have. I’ve been making it a point to acknowledge those whom I love in a forthright manner, which has brought about reciprocal responses.
At the outset of the pandemic, I emailed Barry Owen a short note; at the time he appeared to be holding steady. I reminded him of our mutual friend, Denise Kessler, and explained that about the time she turned 90, we both “began ending all of our conversations with “I love you.” She and I continued that ritual until two weeks before she died at age 98, I wrote Barry, ending with the same message to him, “I love you.”
In his reply, he updated me on his condition. “No news is good news, which is to say, I’m still here.” He explained that he and Dan, his husband, “speak frankly with each other about death and what is it called? Oh yeah, end-of-life planning. But we don’t dwell on my condition or the future. We live our shared lives as normally as possible.”
And then he signed the email, “Love, Barry.”
In his final weeks, Barry completed the necessary to-dos in preparation of his death, his husband told me. And then he died, a year after his diagnosis, and a week after his first wedding anniversary.
By the time of his death, three months into the pandemic, I had finished my own death planning. I am prepared — but not ready to go.
Where to get help online
For those who need help getting started, here are some resources:
●Lantern (lantern.co) is a free website with checklists and articles about end-of-life preparations.
Everplans (everplans.com) is a subscription-based online product for creating, organizing and storing your end-of-life plan.
The Conversation Project (theconversationproject.org) is a website focused on helping people talk about their wishes for end-of-life care.
Anne Ross doesn’t think about death the same way she used to.
As a volunteer hospice worker for over a decade, she said, the work profoundly impacted the way she views, and talks about, death.
Anne hadn’t planned to volunteer when she was first introduced to hospice, she said. When she first stepped foot into Bonner Community Hospice over 11 years ago, it was with her mother-in-law — a woman who had recently experienced a loss in California.
“I just couldn’t believe how compassionate they were,” she said. “I had suffered some loss in my life, a husband and a fiance, and I had never received any kind of grief support. So to see this in action, I definitely wanted to be a part of it.”
Often, hospice has a bad connotation said Tami Feyen, RN hospice manager. Despite offering a wide variety of services to people with terminal ailments and their families, hospice is often overlooked.
“I know a lot of people think ‘wow, hospice, that’s dark. You know, who would ever want to [do that], or find joy in that,’” Tami said. “But the reality is, it is really beautiful. It is just such a gift to be able to be at someone’s bedside, and work with them through the process of their decision making and seeing those things that are most important to them come forward and be executed as they move through their journey.”
The role of hospice
Most clients who come into hospice care are individuals with a terminal diagnosis of six months or less to live. Clients are often referred by their doctors, and hospice services are covered by Medicare and Medicaid and many private insurances.
The range of services hospice offers go far beyond what many people might expect, Tami said. Some include help with pain management or caregiving. But another role of hospice, she said, is to help clients make the most of their time and help fulfill final wishes.
“We’ve had a tattoo party, someone who always wanted to get a tattoo, and the means to do that was not something that she had,” she said. “We’ve had people go on a last boat ride on Lake Pend Oreille, because that’s where their heart and soul is.”
Other times, she said, the hospice reunited estranged families and helped people share final moments with their parents. The work isn’t just comfort care, she said.
“There’s a lot of psychosocial, spiritual, emotional support that goes into our care,” she said. “It’s truly the most unique specialty that I could ever think of being involved in.”
Stories from hospice care
On Anne’s first hospice case, she said, she came to spend time with an elderly man in an assisted living facility. His daughter had requested hospice care, although her father’s physical needs were already taken care of. So, Anne said, she would visit, and the two would watch golf on television.
“I wasn’t really sure why I was there, because obviously, they have a staff,” she said. “One time when I left, he said, ‘I enjoyed you today.’ And we had hardly spoken, but just having a person, you know, a presence there … that connection [makes a difference].”
Recently, Anne said, hospice helped people in her own life. Only a few weeks ago her aunt, who lived in Chicago, passed, she said. But before she did, a hospice with similar services to Bonner General’s helped her make the most of her last few months.
“My mom and my aunts all had a happy hour at five o’clock, a cocktail party, where they had a drink and [had] some fancy hors d’oeuvres. And they had an early Thanksgiving,” Anne said. “My sister arranged a Zoom cocktail party where all of her nieces and nephews got to see her and she got to ask us all questions. And she and her sisters usually would go up to northern Wisconsin in the fall to see the colors. And this year, the sisters came to her house and they had a fish fry, a prime rib dinner, and played games and laughed. And that was the weekend before she passed away.”
Mary Faux, a local resident, said her husband received hospice care after a referral from his doctor.
“I thought, he’s just saying that, my husband is going to live,” she said. “That was a Tuesday, and hospice came several times in the 11 days that he lived.”
During that time, she said, the staff helped her, her husband, and her daughter immensely.
“It made his death more tolerable,” she said. “Even if you feel like he’s not going to die immediately or even within six months, the comfort that they bring to you is so rewarding.”
Rusty McKitrick, a home health aide and staff member, also came to the hospice after seeing their work firsthand. One particular patient she helped, a young man with cancer, stands out.
“He was fairly young, his wife and he had been fighting this for quite some time. They were very hopeful that the cancer — they had beat it, that the cancer was gone after the last surgery. He was in therapy doing very well, and all of a sudden he hit a wall and took a spiral downwards,” she said. “He was had been sitting in a recliner for two days, in too much pain, his wife couldn’t get him out of the recliner. So we were able to get his pain under control. Get him out of the recliner. And he was comfortable and happy by the time I left. Joking, telling jokes, just really being able to be part of his family and do things. It made me feel good to be part of that.”
The work can be heartbreaking, Rusty said. But it’s also incredibly meaningful, to her as much as the people she helps.
“I think they probably impact my life and give my life meaning as much as I do them. They’re just — they will always be a part of my life, whether they’re here or not, [and] I will always remember them,” she said.
Serving the community
Every year, Bonner General Hospice serves about 150 clients through end-of-life care, Tami said.
Right now, it is often being used almost as an emergency service, she said.
“So many people aren’t seeing their providers right now,” she said. “So what we’re seeing right now, with ever more increase, is very, very end of life referrals the last hours the last days. And that’s so unfortunate because that person and that family do not get to really journey through their end of life in a healthy way.”
When hospice is brought in earlier, she said, there can be big benefits to families as much as the patient.
Tami recalled a young mother years ago who was dying of cancer and wanted to leave messages for her four children as they grew up. She had lost the ability to write, and so the hospice stepped in.
“We just kind of developed a means to have her record her letters to her kids in her own voice,” Tami said. “This is way back when, and I know we could do it so easy now, but it was kind of a feat back then. And so having that gift to her children was really pretty awesome.”
In addition to the roughly 150 clients, the nonprofit hospice also serves around 700 community members a year through grief and bereavement programs. They also host camp for children who have lost loved ones, and both group and one-on-one counseling free to the community, regardless of whether someone has been connected with hospice before.
Anne, who took one of the grief classes with her daughter a few years ago, said the program helped them both talk more openly about her late husband’s passing.
“[It] had a profound effect on our relationship and the way we viewed his death,” she said.
‘A good death’
Not every story is happy, Anne said. People suffer tragic deaths. But the support they get from hospice can help people have control over how they live the rest of their life, and help families to find peace.
Before coming to the hospice, Anne said, she didn’t talk about death so openly. Death, she said, was only something sad. During the last decade, she said, her work with the hospice has shifted that perspective.
“[Years ago], my first husband passed away, and he died in a hospital. And I had a dear friend with me. And after he died, she said, ‘I’ve never been at a death, but it is just as beautiful as birth.’ And I thought she was crazy … I didn’t see it. But now that I’ve been working with hospice, I see it clearly. It’s all about the love, you know, in a room where this family is just loving this person as they leave their lives,” Anne said. “We commemorate all these special occasions in our lives. birth, first day of school, graduation, marriage, anniversaries, but nobody talks about a good death. Maybe that sounds morbid, but to be in a room with that much love — it’s priceless.”
Most adult children want to help and support their mom or dad when their partner/spouse dies. It’s a tough situation because you are also grieving the loss of one of the most significant relationships of your life. You can help yourself and your mom or dad by understanding grief and grieving, and the tremendous significance of this loss.
When a partner/spouse dies
The death of a spouse/partner is different from the death of a parent. They are fundamentally different relationships and are held differently in our hearts and minds.
The adult child understands and appreciates more fully what their surviving parent is experiencing if they themselves have lost a partner or spouse. It seems we humans often need to have the experience ourselves to really grasp what the experience is like. Grief and grieving are no exception.
Learn from those who have gone before you
If experience is the best teacher, what is the next best thing? To learn from those who have gone before you. Know that life is harder than you can probably imagine when someone you love dies. Act accordingly.
Adult children have been known to say, “I wish I had been there more for mom/dad.” Why do they say this? They say it because they experience the death of someone close to them and realize how it really knocks us off our proverbial feet. The meaning of the word ‘bereaved’ is “torn apart”. It can be hard to describe grieving. It embodies all parts of ourselves: the physical, mental, emotional and spiritual. The difficulty in describing this experience is why many resort to using grief metaphors to describe it.
By the way, if you are someone with guilt or regrets about how you handled your parent’s death (or anyone’s death), you don’t have to hold on to this pain. There is a brilliant project, dubbed the Grief Secret Project. If you have what they call a ‘grief secret’, something you haven’t shared because you feel embarrassed, guilty or ashamed, you can share it there and let go of those negative feelings!
Grief and grieving: natural and normal
Literally every site on grief and grieving refers to it as natural and normal. This is often followed by information on how to tell when a person may need professional help or have “complicated grieving” or even “complicated bereavement disorder.” I am not denying this is the case for some, but for the vast majority of us, grief and grieving does not require the help of a professional.
For sure, there are things we can do to “metabolize grief”, such as telling stories, whether to family or friends or in a grief support group. The point is to be mindful about the unhelpful tendency to medicalize or pathologize grief and grieving. I remember my mom saying that dad was the lucky one because he died first. Some might interpret this as a symptom of depression and that my mom needed professional. When I dug deeper, it seemed to me this comment was based on a realistic assessment of that moment. At the age of 81, mom was living alone for the first time in this big old 4 bedroom home, with 2 lots to maintain, considerably less money each month, and also had to figure out how to do or get things done that dad had taken care of before he died.
If grief and grieving are natural and normal…
What does this mean exactly? It means not getting caught up in stages of grieving, and deciding whether someone is in denial, or in some stage for too long or not long enough. It means not being rigid or imposing how one should grieve, how long one should grieve and deciding when it is supposedly time to “move on”. Your mom, for example, may want to remove your dad’s clothes out of the home immediately, or in a month, or a year, two years later, or maybe never. Does it really matter? Be careful not to pathologize this, despite the feelings it generates in you. You probably don’t know what it means. Your timing isn’t necessarily your parent’s timing. Period.
When someone we love dies, we don’t move through it, “recover” or return to a pre-loss normal. Pointedly, the idea that “closure” even exists has been proposed as outrageous. While we resume life, and it can look like it is back to “normal” from the outside, we are changed internally. That is how significant it is. At best, then, one integrates this loss.
What to do given the significance of this loss?
Experiencing losses, especially the death of someone you love, is both a universal and an intimate and deeply personal experience. Your parent can guide you.
At the level of the everyday and the concrete, you can ask what they want help with or worry most about doing now that their partner/spouse has died. You can help turn that worry into action. For my mom, immediate tasks were lawn mowing and snow removal, and being shown how to put gas in the car!
Be specific when you ask how they are doing. The general ‘how are you doing’ question has become a rather empty throwaway question. Get specific. How are you at night? At bedtime? How are mornings or meal times? The real value of asking is listening to the answer without trying to solve or fix it. It’s the expression of empathy and love and caring that gives the question its value.
Honour the relationship by telling stories and sharing memories. You will obviously have your own stories of your mom or dad, as well as family stories. Share them. Stories and storytelling are powerful and can help us metabolize grief.
Death doesn’t have to be scary. Talking about death early can bring peace before passing.
By Meredith Lumberg
We are taught in medicine how to treat illness, find cures, and prevent morbidity and mortality. One lesson school forgot to teach us is that we all die. In western culture, it’s not common to talk about death, so I’m here to start the conversation with you.
I wouldn’t be surprised to hear you shy away from visiting your grandparents’ nursing home, your hesitance to attend your great aunt’s funeral, or that hospitals make you uncomfortable. The experiences you’ve gone through likely shape your own perspective on death. It’s preferred by most to not think about it, because death is not celebrated, appreciated, or prepared for, especially in the U.S.
How does this connect to you? You’re young, healthy, and have your whole life ahead of you. That’s probably true for both you and me. Probably.
As a volunteer for a local hospice organization and as a pharmacy student gaining experience in end-of-life care, I can vouch that death is more common than you see daily. While most of the patients I see are well past retirement age, and as they like to say, “have lived a good life,” there are always exceptions. These exceptions often include sudden accidents or young people with cancer. Unfortunately, these incidents often leave patients with loose ends and their family members with tough decisions to make. If you don’t talk about death before it happens, it may not go the way you want.
How can you fix that?
1. Start by writing down your thoughts
Would you want to be an organ donor? (It saves lives)
Would you want something down your throat to help you breathe?
Would you want a tube in your nose to help feed you?
How do you envision your funeral?
Do these questions make you uncomfortable? That’s okay. Like I said, it’s ingrained in our culture.
2. Talk to your family or friends
Start a conversation with those closest to you about this topic. Ask them about their wishes and tell them about what you would want at the end of your life. Tell them about how this article sparked your interest, so they have no need to worry. It may be a new and surprising topic for them, so be prepared for funny looks at first, but expect a productive discussion to follow.
3. Fill out an advance directive
This is a document that helps guide others in the healthcare decisions you might want if you are not able to make your own. You can also make this document official if you get it notarized.
If you made it this far, this is probably the most you’ve thought about death. Talking about dying can help you avoid unnecessary suffering for yourself and those closest to you to bring peace before passing. With communication and understanding, we can all have a good death.
Grieving is difficult. Grieving during a pandemic even more so.
In the Islamic tradition, a person’s passing is marked with an elaborate and symbolic funeral. But what happens to those traditions when the world is put on pause, and when tragedy seems never-ending?
Two Muslim leaders, Ahmed Ali and Payman Amiri, share their stories on how they’ve had to adjust their practices in the time of COVID-19, and how mourning has changed in their communities. They tell Scienceline about the symbolism involved in a typical Islamic funeral, what the transition has been like as the pandemic has ramped up and their experiences of having to deal with the dead while mourners grieve from afar.
Hannah Seo: Each of our lives are marked with landmarks in time: birth, maybe a graduation, perhaps a marriage and a few anniversaries…In the Islamic tradition, one of the most important of these events is actually someone’s death.
Payman Amiri: In our culture and tradition. Dying is part of life.
Hannah Seo: This is Payman Amiri, he’s the chairman at the Islamic Cultural Center of Northern California, where he also works as an Imam. Imams are community leaders in Islam whose duties include teaching the Quran, leading prayers, and generally guiding the members of their communities. One of his duties is managing Islamic funeral services.
Payman Amiri: When somebody dies, you know, we try to sort of do that celebration of life, you know, like very formal in a big event and you just look at these family members that they are traveling with their loss.
Hannah Seo: But since COVID-19 spread across the nation, these funerals look vastly different.
Hannah Seo: This is Distanced, Scienceline’s Special Project about how different communities are responding to the coronavirus pandemic. In this installment, we’re looking at how the Islamic community has had to adapt its funeral services, which are important religious events.
Hannah Seo: Islamic funerals aren’t simple. They’re involved, meaningful, and the whole process can span up to several days.
Payman Amiri: The services include the washing of the body for the deceased person has to be washed in a proper way and they get treated with proper spices and herbs is a traditional thing for you. You put it on your skin and then you cover them in a white shroud…
Hannah Seo: He says that all the steps in a proper funeral service are imbued with history and symbolism.
(Guitar fades out)
Payman Amiri: So in our tradition, we believe we came from God, and our return is towards God. And so when you want to give them back, you want them to be washed clean. It has to be a white shroud, it has to be simple because every man and woman will go back to that white shroud. So it’s a symbol of humility.
Hannah Seo: Every aspect of an Islamic funeral is thought through, even the material…
Payman Amiri: It has to be cotton, it’s just everyone is treated equally because, you know, in God’s eye, everyone is equal.
Hannah Seo: Once the body is washed, the next part of the ritual can begin.
Payman Amiri: The body gets transferred to the cemetery, the body gets buried, facing toward Mecca, which is the direction all Muslims pray. And then you get the family members to, to say goodbye by putting flowers in the grave.
Hannah Seo: Or at least, that’s how things are supposed to be done.
For Payman, everything changed starting in early February, when he got a surprising call from a family in Santa Clara.
Payman Amiri: When she passed away and her family contacted us. It was the first case of community infection, and so it was a big deal.
Hannah Seo: Azar Ahrabi, a 68-year-old muslim woman from Santa Clara, California was initially diagnosed with pneumonia, but passed away from COVID-19 on March 9th. At the time, people thought she was the very first case of local community transmission of the new coronavirus in the county, but later, local health officials found two other cases who passed away before Azar’s case even came to light.
(Guitar music fade out)
Originally, Payman was supposed to arrange Azar’s funeral. But the virus, and fear of transmission meant that everyone had to take new precautions.
Payman Amiri: What happens if somebody dies with COVID they have to be in body bags, which were a thick bag with a zipper, and the body was in there. And then there are certain people who could only handle the body they have to be fully covered in PPE.
Hannah Seo: PPE is personal protective equipment: masks, gloves, etc. Suddenly mourning went from something close and intimate to something clinical, impersonal.
Payman Amiri: In our tradition, when somebody passes away, you greet the family with hugs and kisses and you hold on tight. And, of course, post COVID-19 nobody could do this.
Hannah Seo: And the moment that helps bring closure to the whole thing is usually a gathering.
Payman Amiri: Usually a lot of people show up in these memorial services, and it’s always the dinner. At the dinner table a lot of people share memories of the deceased person and it sort of helps the survivors put an end to that chapter.
Hannah Seo: But of course the pandemic has rendered these practices impossible. With mosques, funeral homes, and various businesses shut down, that closure is hard to come by.
Payman’s struggles in the throes of the pandemic are not unique — far from it. Imams across countries have had to adjust in ways they never imagined.
Ahmed Ali: We had to go in people’s home, pick up the deceased. We went into the hospitals, we pick up bodies from there.
Hannah Seo: That’s Ahmed Ali, an imam in Brooklyn, NY. He says imams, as leaders of the community, have had to step up and show up for their people. Masjids and mosques, the usual places of worship and congregation for muslims, closed. Communities were left floundering, and only a few people were left to pick up the slack. For Ahmed, it’s been a lot to take over.
Ahmed Ali: Usually the imam’s job is to just lead the funeral prayer and rest the work is done by the funeral home, but all the employees left in the very beginning of this pandemic. And people were scared because they didn’t know how to protect themselves from this virus and nobody knew what actually this virus is. So, they called me and they say, ‘Imam, can you come and help?’
Hannah Seo: Shouldering all the roles himself, Ahmed became body collector, mortician, funeral director — you name it. And at times, it was gruesome.
Ahmed Ali: When we receive the body from hospital, usually they have all the IVs attached. And if the person was in critical condition, then they have tubes inside their mouth. And some time, when we remove the IVs, the blood start coming.
Hannah Seo: Ahmed says there were times he’d have to enter storage units with racks of bodies, checking toe tags to find the right person. It took its toll, and the burden was immense.
Ahmed Ali: It’s not an easy thing. So you can say it takes about two hour to wash one body. This was really difficult because picking up a body and taking it into the funeral home then unload it then put on a table, wash it, put inside the piece of cloth and then put it back inside the casket, then take it for the funeral prayer, then go to the cemetery lower down the body inside the grave. So this all work is actually really difficult.
Hannah Seo: If this seems like so incredibly much for one person to take on, that’s because it is. But Ahmed couldn’t turn away…
Ahmed Ali: I didn’t say no because this is a responsibility of an imam, that whenever things go, this kind of pandemic, then we have to show that we actually care for our community.
Hannah Seo: Comforting others is easier said than done, especially when you see your community hurting, with no power to change things.
Payman Amiri: I get emotional when [I know when] I do these services to start with because you see, you know, the family is crying and grieving when you feel for them.
(Guitar music fade out)
Hannah Seo: Recreating that connection and support during the pandemic, a time of intense disconnection, is challenging. The emotional burden of conducting a funeral is hard enough without the impediments of social distancing and Zoom preventing everyone from mourning the way they deserve to.
Ahmed Ali: Well, a lot of family members, they did use the Zoom and FaceTime and other apps to show the funeral service to their families around the world. I think, that’s an honor for me that I was able to help those families.
Hannah Seo: Ahmed Ali has led countless services all by himself, with no mourners or relatives around to claim the decedent as their own.
Ahmed Ali: Whenever I got a body with no family member, then I used to record a clip when we lower the body inside the cemetery.
Hannah Seo: Ahmed recorded these services in case friends or family came later, in case they came and wanted something to remember their loved one’s passing.
Ahmed Ali: But there are many clips I recorded and nobody ever asked for them. It’s sad because, you know, I was leading the prayer, I don’t know that person. But I was just there because, you know, I know that that person is a Muslim and a family to me.
Hannah Seo: With many states reopening, Payman and Ahmed’s lives have returned to some form of normalcy. In fact Payman recently had to organize the burial for another COVID-19 victim; this time, however, he was able to carry out a full service for the grieving family.
Things may have gotten better, but Payman and Ahmed are still anxious about the situation. The worst may be behind them, but helping families process their loss is work that is never done.
Ahmed Ali: I as an imam just was able to stand next to them and tell them that, you know, this is reality of life. And now all we can do is pray for this deceased brother or sister.
(Prayer and guitar music in background)
Hannah Seo: This episode was reported by Jonathan Moens and me, Hannah Seo, for Scienceline. Thanks to both Payman Amiri and Ahmed Ali for sharing their stories.
The Holiday Season is just around the corner. For many people it is a very happy time, however, if someone you loved passed away this year the Holidays most likely will not be a happy time because you are missing your loved one. This is true every Holiday Season, however this year it is likely to very different. In previous years there have been a few families grieving the loss of a loved one. However, this year due to the Coronavirus, there are over 225,000 families grieving. Therefore there will be a lot of people grieving this year.
A common problem people face regarding grief is they do not know what to say or do at times when someone is grieving. The reason we have this problem is that we do not really talk about death and grief in our society. There is a tendency to think that after funeral services are completed that people quickly resume normal life. This is not true. The grieving process can take a long time and everyone has their own way of grieving. This makes knowing what to say or do very difficult especially during the Holidays.
I have had many patients ask me what should I say or do when they are talking about someone who is grieving. Therefore, I researched the literature on grieving and came up with these suggestions about how you can respond to someone who is grieving during the Holidays or anytime.
The 10 Best and 10 Worst Things to Say to Someone in Grief
Sheryl Sandberg’s post on Facebook gave us much insight into how those in grief feel about the responses of others to loss. Many of us have said “The Best” and “The Worst.” We meant no harm, in fact the opposite. We were trying to comfort. A grieving person may say one of the worst ones about themselves and it’s OK. It may make sense for a member of the clergy to say, “He is in a better place” when someone comes to them for guidance. Where as an acquaintance saying it may not feel good.
You would also not want to say to someone, you are in the stages of grief. In our work, On Grief and Grieving, Elisabeth Kubler-Ross and I share that the stages were never meant to tuck messy emotions into neat packages. While some of these things to say have been helpful to some people, the way in which they are often said has the exact opposite effect than what was originally intended.
The Best Things to Say to Someone in Grief
1. I am so sorry for your loss.
2. I wish I had the right words, just know I care.
3. I don’t know how you feel, but I am here to help in anyway I can.
4. You and your loved one will be in my thoughts and prayers.
5. My favorite memory of your loved one is…
6. I am always just a phone call away
7. Give a hug instead of saying something
8. We all need help at times like this, I am here for you
9. I am usually up early or late, if you need anything
10. Saying nothing, just be with the person
The Worst Things to Say to Someone in Grief
1. At least she lived a long life, many people die young
2. He is in a better place
3. She brought this on herself
4. There is a reason for everything
5. Aren’t you over him yet, he has been dead for awhile now
6. You can have another child still
7. She was such a good person God wanted her to be with him
8. I know how you feel
9. She did what she came here to do and it was her time to go
10. Be strong
Best & Worst Traits of people just trying to help
When in the position of wanting to help a friend or loved one in grief, often times our first desire is to try to “fix” the situation, when in all actuality our good intentions can lead to nothing but more grief. Knowing the right thing to say is only half of the responsibility of being a supportive emotional caregiver. We have comprised two lists which examine both the GOOD and the NOT SO GOOD traits of people just trying to help.
The Best Traits
Supportive, but not trying to fix it
Non active, not telling anyone what to do
Admitting can’t make it better
Not asking for something or someone to change feelings
Not time limited
The Worst Traits
They want to fix the loss
They are about our discomfort
They are directive in nature
They rationalize or try to explain loss/li>
They may be judgmental
May minimize the loss
Put a timeline on loss
The above information is meant to be used as a guideline. Everyone goes through the grieving process in their own way. It is very important to understand that point. It is also important to remember while the above is a guideline, the most important thing is your intent. So if you say a worse thing but you said it out of love the person will understand. The guideline will hopefully make you more comfortable to offer support to your grieving loved one or friend. Because someone who is grieving needs people to talk to without people feeling awkward. Also everyone is around immediately after the death and through the funeral services. Most people then go back to their normal lives. However, those who were really close to the person are still grieving and trying to figure out how to proceed with life. So don’t forget the person who is grieving can use emotional support for the first year especially. Therefore, do not forget to call, send a card or stop by occasionally. Especially around the holidays and birthdays.