Letting grief make you stronger

By Nancie Wiseman Attwater

Grief is powerful and can break your heart for the rest of your life, or you can learn from it and become stronger. Losing a loved one is something that everyone will go through, but not all come out as survivors in the end. It’s part of life, but a very difficult part. Think of your loss as a lesson to help you live the rest of your life.

How do you survive grief? It’s a difficult question and everyone will have a different answer. You must find your own answer and let that be your focus rather than the sorrow you are feeling. Death is final, there is no going back, but your grief can slowly ebb if you work at it and learn what you can do to feel better for yourself. I don’t have all of the answers, but I have done some real soul-searching to make my new lifestyle work for me. No one can do this for you, you have to take care of your own heart and soul.

I write. That helps me get through the hard days and the difficult nights. Not everyone will feel comfortable writing their thoughts down, but there are some other options, and hopefully, one or two will fit your lifestyle.

1. Grief is like a chronic illness. Some days will feel better, and others will be just like the first day after your loved one died. You will always have grief, but it can be managed. You will never forget them, and remembering the time you had together may be more helpful than thinking only of the time you no longer have with them. It’s always there, in the same room with you at all times. It might be right next to you or across the room, but it is there.

2. Reading about others’ grief and what they did to feel better may help you. How did they survive every day? There are dozens of books and resources about grief. I received an email every week for 12 weeks from the Neptune Society, the folks who cremated my husband, on the stages of grief and how to work through them. Try and read this helpful information if you receive anything like it. It truly is invaluable.

3. Speaking to others who may have gone through the same loss. Choose carefully as the person who lost a child, or a parent may have a different experience than someone who lost a spouse.

4. Finding things to do that focus your mind elsewhere. Not easy to get out and exercise when you just want to go back to bed. There are other things like reading, crafts of some sort, or even just cleaning out the cupboards in the kitchen.

5. Your appetite may change. For most, I think eating becomes an issue because they don’t feel hungry. They live alone now and don’t want to sit at the table across from an empty chair. Wander the grocery store aisles and find things that appeal to you. Even if it is just a chocolate rice cake, it’s something.

6. Alcohol. Be very careful. Using alcohol to calm your nerves or go to sleep can turn into a bigger problem than your grief. I used brandy every night for a month to help me sleep. I knew I was headed in a bad direction, so I had to find other ways to help me sleep. Music is at the top of the list.

7. Get help. Please get some counseling and let your grief pour out during your sessions. It’s a safe place to talk with no judgment. Online counseling is easy to get now. Contact your health care provider to see what they have to offer.

8. Exercise of some sort is a great stress reducer and will increase endorphins that help make you feel better. I’m not a bit gym person, but I have one where I live, and I get there when I can. My exercise is walking the dog. We walk up to 10,000 steps a day, sun, rain, or wind. It helps us both. I feel better, and I think the dog does too, after a long walk. We have several walking paths where I live, and I think we have walked every one of them. One day, my dog saw someone using a walker and ran to catch up with them. Bill used a walker, and I think she thought it was him. She came to a screeching halt when she realized it was a woman. I felt so sorry for my dog because how do you explain death to a pet? She is grieving too, and I’m sure she wonders when Bill is returning.

9. I have to walk by my husband’s clothes hanging n the closet every day. I am not ready to get rid of them. Some days I wear one of his flannel shirts. It’s huge and will always make me cry for a minute, but it’s a closeness I’m not ready to give up.

10. The one thing that I miss is Bill saying, “Good night, sweetheart” every night when we went to bed. I still think he is going to walk out of the bathroom in the morning and say, “Good morning,” but that is wishful thinking and all part of the grieving process. I still can’t believe he is gone, and my brain and my heart need some time before acceptance is part of my reality. I spoke with our accountant the other day, and when we were saying, “Goodbye” he said, “I love you.” This was so sweet, and I have never even met him, only talked on the phone. I sat in my chair and cried for a bit and realized I miss that sentiment too and will always long to hear it again from Bill.

11. If your loved one had a long illness and you experienced anticipatory grief before the actual death, you may find that your grief now doesn’t seem strong enough. You might ask, “Why am I not feeling more sorrow?” You’ve already done a lot of the work, and even though “grief” has not left the room, your day-to-day struggle may be slightly less. Some days will always be brighter than others, no matter when and how you experience grief.

12. Grief will stay in the room with you wherever you go. It might be next to you or over in the corner, but it will always be there. I went to my local grocery store, where I always bought cream puffs for my husband. He loved them and asked for them whenever I went shopping. I just happened to walk past the cream puff section of the store while shopping the other day and started crying. That’s how grief stays with you. A simple reminder of your loved one can – when you least expect it – bring sadness and tears. I had to walk away and wipe my tears and told myself to stay away from that section of the store if I possibly can. I’m in charge of my grief, the cream puffs are not, so I need to manage when I think I can walk by them again and not break down in tears. It’s the age-old phrase, “Choose your battles.” Always choose where you are the winner.

13. I have found that at least once a day since my husband passed away about three months ago, I have had to tell someone, “My husband passed away in August.” For some reason, it happens every day. The bank, Social Security, the state, or the HOA where I live, someone! Even the pest control people needed to know. I found after a while that it became easier to say the more I said it. I can now say “Bill passed away” without crying. I may tear up, but saying it more often sort of takes the “sting” out of the words and their meaning. This made me stronger and more accepting of what has happened and the need to let everyone know.

14. When someone asks me how I am doing, I’m still not able to answer without tears. I went out to lunch with a friend the other day, and she kept asking me over and over how I was doing. I told her I couldn’t answer right now, which may have been hurtful for her because she really cares, but I had to stop the tears. It ruined the lunch I was looking forward to, and could not eat another bite. It was a well-meaning gesture, but I didn’t want to cry at the restaurant. I need to get stronger on this issue and with my answer. Usually, I say I’m “OK,” but that isn’t enough for the people who really care sometimes.

15. Keeping busy helps, but don’t overdo it. One task, a phone call, or a chore a day is useful for keeping up with everything, like paperwork for a government agency or retirement income changes. Some of these calls are very frustrating. I talked to Social Security at least once a week for a while, but I made the call when I was rested, had eaten something, and felt I could handle their questions as well as they could handle mine. You never know what kind of day the person on the other end of the phone has had, and if it feels like all you get is rudeness and no answers, maybe it’s best to try again another day.

16. I had to learn to cook for myself. This was a benefit to me. Bill always did all of the cooking, and I had to take over when he could no longer work in the kitchen. I’m not a great cook, but I do try to manage something for breakfast and sometimes dinner. I was going to look into cooking lessons next year and see if this gives me a new place to meet some people and make a friend or two.

17. Let kindness become a part of your life. I have a pretty good temper when provoked or feel someone isn’t giving me the service I think I deserve. I am working on being more gentle with my fellow humans because I have learned that life ends too soon. I want to be remembered for being nice, not crabby. My husband lived that way every day. I should have learned it sooner but was always so busy taking care of him that I didn’t give it much thought. I am learning from him still, and my grief makes me remember him and his “moral compass” that always seemed to be in the correct direction. I’m also trying to get my compass in the correct direction while I manage everything on my own.

18. A friend told me that it takes about two months to get everything straightened out – the insurance, social security, banks, and retirement accounts. I scoffed at this, thinking I’ll give it about a year. That’s also what they say is the length of time to accept the death of your loved one. I’m three months out, and the money issues seem to be clearing up, but I’ve got a long way to go to get used to the loss of Bill. I’m OK with that, I’m still working on this and will for a while, I’m sure.

19. Make your home all about you. You don’t have to remove mementos or photos, but now you can arrange the furniture or bathroom. Bill used a walker, we had to have wide paths for him to get through the house. I can now change this and rearrange things for my comfort. Bill also had several photos of old relatives hanging on the wall. I had no idea who any of them were, so I removed them and put up photos of my family and some of my artwork. It’s hard to do, but his family photos belong to his children, not me.

20. And finally, it’s OK to laugh despite your grief. In fact, laughing is good for you. A good sense of humor can’t cure all ailments, but data is mounting about the positive things laughter can do. Laughter enhances your intake of oxygen and stimulates your heart, lungs, and muscles. It also increases endorphins that are released by the brain. Laughter can cool down your stress response, soothe tension by stimulating circulation, and aid muscle relaxation. Laughter also has long-term side effects like improving your immune system, relieving pain, making it easier to cope with difficult situations, and improving your mood. I do my best to be around people who either make me laugh or at least seem happy. If someone has so much sadness themselves that it makes me feel sadder, I will say hello, but walk away as soon as is comfortable.

Complete Article HERE!

After a loved one dies, red tape adds to the grief

Bureaucratic delays and paperwork are frustrating, exhausting, emotionally crushing — and often unavoidable

by Allison Engel

In quick succession last spring, my family experienced three wrenching deaths: My brother-in-law died of a late-diagnosed cancer, my husband, Scott, died of a different late-diagnosed cancer and my mother died at age 100.

The last thing you want to deal with when you’re wrapped up in grief is red tape. It’s frustrating and exhausting and emotionally crushing. And yet it is unavoidable.

My family thought our financial affairs were organized. We had wills and beneficiaries were listed there and on all financial accounts. Many people don’t do that, which makes the post-death red tape so much worse. But even so, we’ve endured months of maddening experiences with banks, insurance companies, employers and the Social Security Administration — among others.

Here are a few of the most aggravating roadblocks:

Face recognition, voice recognition and fingerprint recognition speed up access when someone’s alive but present tremendous barriers for survivors trying to wind down accounts. When I sign in to my late husband Scott’s password manager and investment accounts, access codes are sent to his phone. Despite many tries, I find I cannot change that phone number. This means keeping Scott’s phone active, a needless expense.

Credit card mix-ups

If you think you and your spouse share a credit card, because each of you has a card with your name on it and the same account number, guess again. That card belongs only to the person who applied for the account. Credit card companies are alerted to a death quickly by the Social Security Administration, and will freeze a survivor’s ability to view the account online. Providing a paper statement seems logical, but our bank’s representative told me, “Once you’ve opted to get online statements, our policy is you cannot go back to paper statements.” It took six full months of begging to the bank’s “Deceased Management Team” (actual name) to be mailed statements for the months following Scott’s death. And it wasn’t easy to cancel some recurring charges.

At Best Buy, a customer service representative said I had to take a death certificate to a Best Buy store to cancel a Geek Squad subscription. I considered dressing in black with a veil but went dressed normally, with death certificate in hand, and got the refund.

Personal visits are discouraged

When your frustration level rises after marathon sessions on hold, you might be tempted to visit the bank or insurance office in person. Don’t. At one bank, an employee would not make an address change when I arrived, and referred me to the financial institution’s website.

I visited a Social Security office in person twice to try to change the address where Scott’s post-death Medicare bills were sent since I had moved — and was now paying those bills. An address change could not be done in person after a death, I was told; use his online account. But it is the one account not in his password manager and it has a unique username I don’t know. I hope his medical bills, arriving at a snail’s pace, all come before the Postal Service stops forwarding his mail to our old address.

Documentation overload

I bought multiple copies of Scott’s death certificate, but I was unprepared for how companies string out requests for other documents. Scott’s longtime employer clawed back his monthly pension without notification, then refused to tell me what documents it required other than the death certificate. The company needed to investigate Scott’s pension wishes, it said.

Scott had had only two choices: a higher pension that ended with his death or a lower pension that continued to me. From the dollar amount of the checks, it was obvious he had chosen the lower pension.

Two weeks after receiving the death certificate, the company rep asked for Scott’s birth certificate. Two weeks after that, our marriage license. Two weeks after that, she requested the original Social Security card I applied for at age 16. A friend, a retired district judge, pointed out that companies get only 30 days to resolve such issues. I called and told the representative that this limit had been exceeded. Amazingly, she called the next day and said everything was resolved.

Still, she insisted on sending the three months of withheld pension payments to my old address, even though I had provided proof of my new address weeks earlier.

Lengthy waits

Expedia required a death certificate and 30 days to quit sending Scott emails. I couldn’t just unsubscribe him because he once had been booked on a flight through Expedia, the online travel agency’s fine print disclosed.

At our bank, I had to make one appointment with an official to delete Scott’s name from our joint checking and savings accounts, and another to change beneficiaries on that account. I was told to plan 90 minutes for the first visit. (It took two hours.)

Most of the time was spent sitting in the banker’s cubicle, waiting while he tried to get the bank’s estate management group to answer the phone. He waited on hold for 43 minutes while I sat there. Deleting Scott’s name took a few minutes. The banker hung up without asking about the credit card linked to that account and had to call back. We waited another 18 minutes for the phone to be answered.

My return appointment for the beneficiaries took another hour sitting in that cubicle.

Many of these red-tape problems are made more galling as they often require phone calls with endless waits on hold. When representatives finally connect, they invariably start by the rote and insincere “sorry for your loss” scripts.

Grief is hard enough. Dealing with tech barriers and nonsensical policies make the months after a death into a second career of aggravating phone calls, emails and visits.

How to reduce these irritations

To minimize these frustrations, here are a few suggestions learned the hard way:

1. Keep an updated list of recurring credit card charges, organized by each card.

2. Make sure you have a credit card you applied for in your name.

3. Get a password manager to hold all your user names and passwords and make sure your executor knows your master password. If you have some accounts that are not included in a password manager, make sure your executor knows what they are (and also remember to update any list in case you change them periodically).

4. Buy at least six copies of the death certificate. Some companies allow you to email copies, but others require the physical certificate.

5. Do an inventory now and make sure you have birth and marriage certificates, adoption or divorce documents and Social Security cards. After many decades of marriage and multiple moves, some of these documents may have gotten lost. It can take weeks to get copies from the various agencies.

6. Don’t put the will or other important documents in a safe-deposit box. Getting access to it can be a lengthy process, particularly if your loved one misplaced the key. Even with a key, if family members suddenly need to get a loved one’s medical power of attorney outside of bank hours, for example, they are out of luck.

Complete Article HERE!

When the patient is family

— Perspectives on caring for loved ones during end-of-life

By Lora Parisien

Every day, hospice workers bring comfort to dying patients so that they may die with dignity and on their own terms. They extend grace and compassion to all, regardless of who they are or where they come from. This is the humble work of a Hospice of Michigan employee. This is the promise they keep: Every Person. Every Time.

But what happens when the hospice worker’s patient is a family member? Does having a hospice background make it easier to navigate the challenges of caring for a terminally ill patient when that patient is a loved one?

When she was just 10 years old, curiosity drew Sarah Beegen to the room in her family’s home where hospice staff were attending to her dying grandmother. “I wanted to know. I needed to know what was going on in there,” said Beegen. This same inquisitiveness led her to a career with Hospice of Michigan, where for the past 17 years, she worked her way from certified nurse assistant to her current role as manager of the not-for-profit’s referral center.

If anyone was fully prepared to care for a dying family member or insulated from the hardest aspects of death, certainly Beegen was. When her mother’s cancer became incurable, she “shut off my ‘hospice eyes’ and focused on other things. I didn’t want to see that mom was dying.”

The truth is, no amount of training or experience can prepare one for the death of a loved one — because dying is more than a medical event, it’s a deeply personal experience.

Hospice workers understand that both patients and their family members can struggle accepting life-limiting diagnoses. In 1969, Elizabeth Kubler Ross, a Swiss-American psychiatrist and pioneer in the worldwide hospice movement, identified five stages of grief. When faced with imminent death, denial, the first of the five stages, is a common reaction to change and loss. No amount of hospice training can derail feelings of grief. Denial is the defense against something that is impossible to accept.

“No matter how seasoned you are, you can never be prepared when the patient is your loved one,” says Beegen.

Tracey Pierce, director of marketing and communications for Hospice of Michigan, also found herself in unexpected territory when she reached out to her colleagues for help. In a matter of months, her mother- and father-in-law suffered falls, hospitalizations, and anxiety which led to a drastic decline in their health.

“It’s a different ballgame when you are on the other side. For as much as I thought I knew about hospice care, I realized how much I didn’t know. I’m grateful we had my work family to lean on. Hearing the stress in my voice, they calmly answered our questions and addressed our concerns with compassion and patience,” said Pierce.

That is the gift of hospice, a team of experts sweeps in and surrounds patients and families — and sometimes colleagues — with knowledge, skill, and compassion, providing wide-ranging physical, emotional, and spiritual support at a crucial time.

Beegen and Pierce both knew they needed help from the experts, the people she worked with every day. “If I learned one thing from my mother’s death, it’s not to be afraid to ask for help,” said Beegen.

“We always talk about providing care and dignity in hospice. It was evident in simple, nurturing acts, such as a hospice aide bathing my mother-in-law,” shares Pierce. That gave Pierce and her family the opportunity to focus on being present in all the precious moments they had left.

Redefining what was and shifting to what is now. Searching for meaning. Contending with change. Living day by day. Preparing for death. These are the hallmarks of coping with the terminal illness of a loved one. It is a highly personal experience, no matter who you are. Though it can be daunting, no one should face the end-of-life process alone.

Complete Article HERE!

Black Christian patients are less likely to receive their preferred end-of-life care.

— Researchers hope change that. 

by

Researchers from the University of Alabama at Birmingham published a paper in the Journal of Racial and Ethnic Health Disparities demonstrating the importance of respecting the deeply held beliefs of African American Christians to help provide equitable, goal-concordant end-of-life care to these patients.

There are two schools of thought among clinicians at end of life: aggressive care, which focuses on treating the illness or condition, and supportive care, which focuses on pain and symptom management.

In this publication, researchers demonstrated how the term aggressive care — used loosely by clinicians to describe care that can negatively impact quality of life for patients with serious illness — is often used to inappropriately label the preferences of African American patients.

“Our motivation through this article was to bring in not only the perspectives of African American Christians, but also to share the biblical and historical backdrop that can be instrumental in shaping their serious illness and end-of-life wishes,” said Shena Gazaway, Ph.D., assistant professor in the UAB School of Nursing and lead author of the study. “In collaboration with our wonderful medical colleagues, we wanted to acknowledge the origins of aggression and discuss how the labeling of care as aggressive with patients and their families can negatively impact care conversations.”

For patients with serious illness such as advanced cancer, dementia and terminal illnesses, the term aggressive care is used to describe courses of treatment that could potentially cause increased physical distress and psychological stress and a decreased likelihood of experiencing a “good death.” The Institute of Medicine defines a good death as “one that is free from avoidable death and suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes.”

“The data is clear — a larger proportion of African American families reported that their loved one did not receive care that is in accord with what they requested in the final days of their life,” said Ronit Elk, Ph.D., associate director for the UAB Center for Palliative and Supportive Care, and professor in the UAB Division of Geriatrics, Gerontology and Palliative Care and co-author. “We hope this article provides a careful explanation of why these values are so important to the African American Christian community and will strike a chord in many clinicians about the importance of respecting these values and not dismissing the beliefs that these patients and their families about hope and the miracles of God.”

In this article, researchers discuss how many Black Christian adults share a belief in miracles that shapes their end-of-life care decisions. The article states that this belief in miracles combined with an overall distrust in the health care system — due to a history of medical experimentation and centuries of health care disparities — have led many African Americans to depend on their belief in God’s healing power to perform miracles and heal family members who are seriously ill.

The UAB Center for Palliative and Supportive Care offers the African American Communities Speak program to clinicians. This skills-based training incorporates videos created by the African American community to train clinicians on the community’s cultural values, lived experiences and recommendations for care. Self-reflection and active learning techniques provide participants the foundation needed for changed behavior and improved communication with patients and caregivers.

This trust in God, belief in miracles and distrust of clinicians may lead to a seriously ill African American Christian patient to request life-sustaining medical interventions even when recommendations call for supportive care. When facing terminal illness, this hope in miracles often influences the patient’s medical decisions and fuels a desire for life-sustaining interventions. The paper states that these decisions are also rooted in a belief that God ultimately decides the outcome of life, not the health care system. 

Researchers say the key to goal-concordant care is for clinicians to allow these patients to process clinical information through their preferred spiritual lens and to allow them time to have critical conversations with those in their network.

“We are hopeful that clinicians will read this article and take away the importance of religious and cultural belief systems in this particular patient population,” said Moneka Thompson, staff chaplain in the Department of Pastoral Care and co-author. “Specifically, we want everyone to understand how the values and beliefs of this particular population may impact their end-of-life preferences and decision-making. This article is the combined effort of five very different women from quite different backgrounds.  Our collective goal was to create a think-piece towards movement of health care for this population in a meaningful and more equitable direction. At the end of the day, we want to support health care equity as much as possible.”

Thompson says that there are a few steps clinicians can take to help ensure they are providing goal-concordant care to their patients.

“First, we encourage clinicians to be aware of their own biases towards this patient population that may fuel incongruent care,” Thompson said. “Second, we hope that clinicians will utilize communication practices that encourage cultural sensitivity, humility and curiosity. Finally, we want clinicians to be fully present to the variety of religious and cultural beliefs that this population will present without feeling the need to obtain this value system for themselves or compromise their own.”

Complete Article HERE!

Cooking Can Help Us Grieve, Heal, and Process Our Emotions

—Here’s Why

By Kayla Hui

Recently, I flipped the last page of Crying in H Mart by Michelle Zauner. For those of you who haven’t read it, the memoir is about Zauner growing up Korean in the United States, navigating life without her mother—who passed away after battling an aggressive form of pancreatic cancer—and rediscovering her identity. Down to its core, it’s a touching and fill-your-heart-up story about how cooking and food can help us heal after losing people we love (and warning: reading the book will make you sob).

Whether you cook or not, grief experts confirm that preparing dishes that loved ones used to make for us can play a crucial role in processing grief. To better understand the science, we spoke with a few professionals to learn how cooking can help us heal from loss. And in this week’s episode of the Well+Good Podcast, we had a conversation with Frankie Gaw, author of the new cookbook First Generation: Recipes from My Taiwanese-American Home and Susan Krauss Whitbourne, PhD, psychology professor Emerita at University of Massachusetts, Amherst to talk about the profound healing power of food and cooking.

Taste, memory, and keeping loved ones alive through our meals

Cooking is a sensory experience, involving touch, taste, sight, smell, and hearing.  Of all the senses, though, “the sense most strongly tied with memory is olfactory,” aka our sense of smell, says Peggy Loo, PhD, a licensed psychologist and director of Manhattan Therapy Collective based in New York. When we cook, we activate the hippocampus and amygdala, which are parts of the brain involved in memory and emotional processing.

Research shows that human olfaction can cue emotional aspects of our memory, most of which comes from the first decade of our life. “This is why certain smells can elicit visceral reactions and evoke memories from long ago,” says Shavaun McGinty, MA, LPC, CT, a licensed professional counselor and certified grief counselor at the Peacemaker Center in Dowingtown, Pennsylvania. This process is what some experts refer to as the “Proust phenomenon”—at the beginning of Proust’s novel, Swann’s Way, he details a scenario in which the taste and smell of a madeleine cookie dipped in a cup of tea brings back a character’s long-forgotten memory in detail.

What’s more, cooking helps us grieve is by minimizing the fear of forgetting our loved ones, whether it’s “their voice, their laugh, or that one facial expression they had when they were about to sneeze,” says Dr. Loo. “Knowing that our sense of smell is powerfully tied to memories means that you can access them when cooking dishes we associated with our loved one.”

By following recipes that our loved ones used to make for us or recreating dishes we once shared with friends and family, we keep the memory of a loved one or passed experience alive. In a way, the aromas and scents of the meal help us travel back in time—whether that means apples and cinnamon from your mother’s apple pie or in my case, the steaming broth from hot pot. Cooking is what keeps us connected to loved ones after they’re gone. 

When we lose that special someone in our life, it’s also not uncommon to feel like we lost a piece of ourselves, including our cultural identity. However, cooking can be a way to honor cultural ties, or the passing on of something you had with a loved one, explains Dr. Loo.

Like Zauner, I, too, grew up Asian in America and lost a loved one: my gong gong (grandfather in Cantonese), who immigrated to the United States in the mid-1950s to start a better life. When he passed away from a heart attack in 2002, not only did my family fall apart (he was the glue that held us together), I felt like I lost a large part of my Chinese identity.

A chef, my gong gong cooked for a living and for family, but his death meant that Cantonese dishes—stir-fried clams in black bean sauce, garlic-infused green beans, and steamed fish with ginger and scallions—were no longer served at the dinner table. Though his death occurred when I was just six years old, I’ve come to realize that I felt the gravity of it most in college, where I grappled with feeding myself and realizing that I couldn’t cook traditional Chinese food. I didn’t learn any of my gong gong’s recipes, and he was the only one in my family who knew them. I felt ashamed and disconnected to my identity. However, I found solace in the aisles of Asian grocery stores, picking and reminiscing foods and snacks he used to make for me, and learning recipes online. And in making a bold attempt to cook a version of my gong gong’s Cantonese food at home, I felt more connected to him and my culture.

Grief looks differently for everyone, but cooking is the glue that binds us closer together. “It can be helpful to plan intentional pockets of space for your grief—like the one you might have cooking a meal from beginning to end,” Dr. Loo says.

Whether you’ve lost a parent, sibling, grandparent, or friend, cooking is the driver that reconnects us, grounds us, and helps us heal.

Complete Article HERE!

Deadnaming, misgendering and more

— Chicago’s trans and nonbinary community grapples with end-of-life complexities

Elias Renaud, seen outside St. James Cathedral in Chicago on Nov. 12, is a transgender male and has drawn up a living will.

By Adriana Pérez

When COVID-19 first hit Chicago in 2020, essential worker Elias Renaud texted his sister and a good friend from the bus on his way home from his job at a grocery store.

“If something happens to me, this is where I want things to go, this is what I want done,” Renaud, who uses the pronouns he/him, remembers telling them.

The 44-year-old transgender man, from Edgewater, drew up a living will with the cautious hope that when he dies, his body would be treated with dignity.

“I think by the time I die, there will be a lot of people doing death work that will have had experience with trans bodies or will be trans people themselves, or nonbinary people themselves,” he said.

For trans people like Renaud, as well as for nonbinary people, life comes with its own set of difficulties. But so does death.

Elias Renaud, a transgender male from Chicago's Edgewater neighborhood, has drawn up a living will.
Elias Renaud, a transgender male from Chicago’s Edgewater neighborhood, has drawn up a living will.

As the death care industry grapples with changing cultural attitudes and questions on how to respectfully lay to rest those who identify as trans or nonbinary, a South Side-based LGBTQ community center called the Brave Space Alliance is set to launch the final portion of its Dignity Project this month, completing an umbrella of services that aim “mainly for violence prevention, and to perpetuate dignity in our communities,” said interim CEO Jae Rice, whose pronouns are he/they.

The project includes $400 microgrants for trans people in Chicagoland, a name change clinic and a funeral fund that will give up to $6,000 to cover funeral and burial costs for trans people. The funeral fund is the first of its kind in the country, they say. And beginning this month, Rice said, the Dignity Project will be providing living wills for trans folks in the area as well.

“So at the time of their death, they will have something that’s on record to show how they want to be buried, how they want to be presented, what they want to be buried in, their name that they want to be called — all that stuff,” Rice said.

Multiple conversations with experts unearthed how end-of-life issues become more pronounced for trans and nonbinary people, including deadnaming, misgendering, gendered death care and legal documentation, and how they play out in various institutional settings: funeral homes, the medical examiner’s office, the media and more.

“Deadnaming refers to when you refer to a trans or a nonbinary person by a name that they no longer go by. Often this is their birth name, or it may be their legal name. And this happens either on purpose or accidentally — intention sometimes doesn’t matter,” said Aster Gilbert, manager of training and the public education institute at Center on Halsted, a community center that advocates for LGBTQ health and well-being.

Misgendering similarly refers to when a person is referred to as a gender that they do not identify as. A trans or nonbinary person’s lived name and gender might not match their legal name and gender markers because of what constitute expensive and time-consuming legal transitions, and the anxiety and emotional distress that publishing one’s name under a newspaper of record may cause.

“If there’s a person who was found (dead) and you only have their legal documentation, that may not reflect who that individual actually is, because we’re all required to have legal state and federal documentation that may not have anything to do with our lived realities,” said Gilbert, whose pronouns are she/they.

In a statement to the Tribune, the Cook County medical examiner’s office said the office “treats every decedent in our care with dignity and respect. The loss of a loved one is tragic in itself. When a transgender person dies without having updated official records, their loved ones can face additional challenges that make the loss even more painful.”

That being said, the medical examiner’s office follows the direction of the Illinois Department of Public Health. “The decedent’s gender is reported on their death record or death certificate as the person was officially recorded while alive,” the statement continued. “So, if she was recorded, for example, as female on official documents (i.e. birth record, driver’s license) then that is how she must be recorded at death … We are very sensitive to the concerns of transgender persons and their loved ones, and do our best to respect their wishes to the extent that the law allows us to do so.”

In 2021, the Illinois Vital Records Division of the state health department added a new option to its system: an “X” gender marker in death certificates, which prints as nonbinary.

But though the gender markers in passports and Illinois birth certificates also allow people to choose a gender-neutral option, according to Illinois Legal Aid Online, that is not yet the case with driver’s licenses. Although Gov. J.B. Pritzker approved a measure in 2019 to include nonbinary gender markers on driver’s licenses and state ID cards, the new option won’t be available until the secretary of state’s current technology vendor contract ends in 2024.

Rice said that Brave Space Alliance and Southsiders Organized for Unity and Liberation will work with the Cook County medical examiner’s office and funeral homes to make sure trans people are not misgendered or deadnamed during end-of-life care.

“That is something that our community doesn’t have the pleasure and privilege to think about, is after death care. We’re just trying to survive right now,” Rice said. “The launch of the Dignity Project is to instill dignity while you’re here. And after death as well.”

Death work is necessary, especially for the trans community, said Phoenix Kelley, a death doula based in Jackson, Michigan, whose pronouns are they/them.

“Many funeral directors will go with the family of origins’ wishes, which often means that a trans person is misgendered, deadnamed, dressed as the gender that they did not identify with during their viewing and listed like that in their obituary,” Kelley said. “So one of the things that my work is trying to do is to normalize thinking about what you want your death and after death to look like.”

Kim Sabella, the funeral director at Wolfersberger Funeral Home in O’Fallon, Illinois, near St. Louis, said she encountered a situation recently in which the parents referred to their child who had just died with she/her pronouns, whereas some of the deceased person’s friends and peers used they/them pronouns to refer to them. So, she had to take a step back and confirm what pronouns the decedent preferred in life.

“The bigger issue here is how we all, in our workplaces, need to be more sensitive and more aware. And so not be afraid to just sometimes simply ask the question,” Sabella said. “I think that we just have to stop making assumptions about everybody but especially people that are already disenfranchised … We just have to be kinder humans. And I just think that’s just more important than ever before. And especially when we encounter (others) in the midst of grief and loss.”

Kelley, the death doula, strongly recommends that trans and nonbinary people create an end-of-life care document, naming someone specific that has permission to make medical decisions, and to get that document signed and notarized so that it’s a legal document.

“Even before I started doing any training to be a death doula, I knew that preparing a will or some kind of document for your end-of-life is really important,” they said.

The Illinois Department of Public Health offers online resources to those looking to prepare an advance directive, designate a health care proxy or draw up a living will.

At the Center on Halsted, Len DeWilde of the Transmasculine Alliance Chicago does a workshop about the legal steps trans and nonbinary people can take to preserve their own identity in the event of death. This includes sharing information about the different forms and designations that can be filled out, “especially if your next of kin are either not aware of your gender identity, wishes, or you’re afraid that they would actively try to kind of undo it in your death,” said DeWilde, whose pronouns are he/him. The next workshop will likely be held in December or January, he said.

But for some, delving into these documents can be daunting.

“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” says Sydney Kamuda, a 25-year-old nonbinary artist. “My only hope is that I have people who are around after me who can advocate for me.”
“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” says Sydney Kamuda, a 25-year-old nonbinary artist. “My only hope is that I have people who are around after me who can advocate for me.”

“The conversations surrounding what I would like to happen once I’m gone have been happening for a while, but in terms of really putting that onto paper — I think that’s where a lot of the fear comes into it,” said Chicagoan Sydney Kamuda, a 25-year-old nonbinary artist whose pronouns are they/them. “It’s another fearful idea that you are entering into a space where, again, I’m going to have to explain my pronouns and why I look a certain way.”

One of the reasons death work is necessary, Kelley said, is because of the rates at which trans people — especially trans people of color — are killed.

“We have this sort of this community knowledge that it’s very possible for us to die and especially to die suddenly, but taking the time to make those preparations can be scary,” Kelley said. “Even for me, because it makes it feel more real.”

According to the Human Rights Campaign, at least 32 transgender people have been fatally shot or killed violently in the United States in 2022 so far. In Chicago, at least two transgender women have been killed, including Martasia Richmond in June and Tatiana Labelle in March.

“We say ‘at least’ because too often these stories go unreported — or misreported,” the Human Rights Campaign notes on its website. “In previous years, the majority of these people were Black and Latinx transgender women.”

Since the Human Rights Campaign began tracking fatal violence against trans people in 2013, it has recorded 12 deaths in Chicago, all of which have been Black transgender women.

Deadnaming and misgendering trans people, Rice said, translates into not having an accurate count of trans deaths and a consequent inability to fully understand the violence trans folks face — “because so many trans deaths are not labeled trans deaths.”

“But when we don’t know that these people who are dying are actually trans folks, then how are we going to get toward any sort of actual liberation?” Rice asked.

Nonbinary artist Kamuda, who was 16 years old when their father died of complications from lung cancer, said this close experience with death has made them think about their own mortality. Death, they said, is one of the singular unifying factors in everybody’s lives.

“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” Kamuda said. “My only hope is that I have people who are around after me who can advocate for me.”

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I went from being a labor-and-delivery nurse to a death doula.

I help people who want to die on their own terms by refusing food and water.

People who voluntarily stop eating and drinking tend to be terminally ill people whose doctors can’t predict how long they have left to live.

By

  • Nancy Simmers is a death doula whose clients decide to end their lives by refusing food and drink.
  • A former labor-and-delivery nurse, Simmers says the process of death is similar to birth.
  • This is Simmers’ story, as told to Jane Ridley.

This as-told-to essay is based on a conversation with Nancy Simmers. It has been edited for length and clarity.

Most people are taken aback when they hear that I’m a death doula. They’re shocked when I say that I work exclusively with people who want to die on their own terms, by voluntarily stopping eating and drinking.

The method, known as VSED, might seem terrible at first. But it lets you take control of the circumstances of your death.

Most people support the idea of the power of the individual. They understand someone who says, “It’s my life, let me get on with it.” But they feel uncomfortable when someone says the same thing about their death.

I used to be a labor-and-delivery nurse. Over the years, I’ve come to see death and birth as physical, emotional, and spiritual thresholds. They are similar processes. They involve uncertainty, fear of the unknown, and transformation. Both require courage, surrender, release, compassion, and support from others.

Some people reach a point in their life and decide they’re done

The US law largely doesn’t prevent people from choosing to end their life by VSED, which doesn’t require permission from a physician.

Many people who opt for VSED have a terminal illness. But it’s almost impossible to get a firm prognosis for neurological diseases such as ALS and Parkinson’s. People can suffer for years as their bodies and mental capacities deteriorate. Some people reach a certain point and say, “I’m done.” A person in their 90s who has lost their vision, hearing, and bladder control may feel that their quality of life is nil.

A headshot of death doula Nancy Simmers
Nancy Simmers, a death doula, helps people who opt to stop eating and drinking, a method of death known as VSED.

If a doctor won’t certify that you have less than six months to live, you are not eligible for “death with dignity.” The laws — which apply in eight states and Washington, DC — allow people to take lethal drugs under medical supervision.

VSED is another version of death with dignity. Each VSED death I’ve attended has been different, but not undignified. Most of my clients die in their own homes surrounded by their loved ones. It’s a gift. It wasn’t VSED, but when my father was dying of cancer in 1991, my sons — 8 and 5 — were in and out of their grandpa’s room. It doesn’t do anybody any favors to be frightened of death.

VSED requires a lot of planning

A lot of people know nothing — or very little —about VSED. There are some scary myths. People think that it involves great suffering and that it goes on indefinitely. They assume it will affect your life-insurance policy.

VSED is not to be considered lightly. It needs lots of careful planning. It’s reversible up to a point, and there are medications to ease the transition. Family members usually know about the decision and agree that it’s the choice of the individual concerned. Life insurance is mostly straightforward because the doctor does not write “suicide” as the cause of death; they note the person’s underlying condition, such as cancer.

An altar full of photos that pays tribute to the person dying
Simmers set up an altar to celebrate the life of a woman who chose VSED.

People considering VSED in my home county of Whatcom, Washington, find me via word of mouth or online. I’ll arrange to meet with them and their family. My partner, Andrea Fenwick, and I give frank and honest answers. There’s no sugarcoating. We’re part of the nonprofit VSED Resources Northwest, though we advise people across the world.

We can understand why families question their loved one’s decisions. It depends on the case, but we might tell them: “This is your beloved person, and your beloved person is suffering. It’s their body and their choice.”

We’ll tell the family, “Although you will suffer because you’ll miss this person, it’s their choice to end their suffering — how can you be supportive of this choice?”

Once things are decided, we mark the start date with a little ceremony. We celebrate the person and their life and their choice. We thank them and shower them with love and gratitude.

Many families make a small altar. It’s the focal point of their room. They’ll decorate it with family photos and precious items that remind the loved one and their visitors about their interests and skills. It’s a reflection of a life well lived.

I like to light a candle, symbolizing the person as a spirit. After the death, it becomes part of a leave-taking ceremony and is blown out.

VSED is a serious commitment, but it doesn’t have to be a solemn affair. My last client lightened things up with a touch of humor. We’d ask how she was feeling during her first few days of VSED — she joked about wanting a cold Pepsi.

I tell my folks that dying has been around for millions of years. Your body knows what to do. Just trust your body. Our bodies know how to breathe. Our bodies know how to process food. Our bodies know how to birth. They know how to die.

It can be hard for families to watch as their loved one becomes confused because of dehydration

VSED takes an average of nine to 11 days. The person is usually up and about for the first few days. But the middle stage, which can last almost a week, is the marathon.

They’ll need medication — a mixture of morphine and anxiety drugs — to help them through the confusion and delirium caused by dehydration. It’s hard for the family to watch. A designated person will step in if the loved one calls for food or water.

The final stage lasts about three days. Dehydration makes people sleepy. It’s reassuring for everyone because you lose consciousness when your body goes into crisis mode.

The lack of fluids affects your kidneys and liver. The excess bilirubin makes the skin look yellow. The feet and the fingertips turn blue. Breathing becomes shallow or agonal.

Friends and relatives gather at the bedside to say goodbye. It reminds me of families coming together to welcome a newborn. We want the very best for the baby; we support them when their journey in life begins. People deserve the same support when the journey ends.

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