Notes on Grief

This is the ninth anniversary of my husband's death. He had a massive cerebral hemorrhage while teaching an aikido class and died six days later. It's been nearly a decade, and I continue to relive the experience. Our daughter grew up suddenly that week, and we shared the vast realm of grieving. Her boss let her stay with me for a month, and we got to know each other again. For the next three years we celebrated “Grief Week” together: We'd choose a beautiful place in the country where we would hike during the day and cook a meal he would have enjoyed at night. We talked, drank good wine, and shared the mystery of our evolving lives. My daughter is now an award-winning documentary film marketer and producer; I am a successful teaching artist and work with the Parkinson's community on adaptive movement, dance, and balance. I know that I'm okay on my own at 76. I have a sense of purpose and a creative energy that I might not have gained without knowing grief so well. —Judith Sachs, Philadelphia

My mother spent the last two weeks of her life in hospice. I stayed with her throughout that journey. It was one of the most difficult periods of my life, but I feel honored and blessed to have been with her. I know she felt my presence and love even though she couldn't speak. I was the one who held her hand, sang her favorite song, told her stories, and assured her she could go. I was the one who brushed her hair and kissed her forehead as she took her final breath on Christmas Day 2018. —Lynn Rosenthal, Oak Park, MI

Soon after my maternal grandfather was diagnosed with Alzheimer's disease, I discovered letters he had written to his father (my great-grandfather) while stationed overseas during World War II. In one letter he wrote, “Most of my roommates are Philadelphians—Italians, Jews, Russians, Slavs—all real American fun-loving boys. The majority of them dread the thought of ‘KP,’ but my experience behind a soda fountain will enable me to take my job in stride.” The letters fully capture my grandfather's personality and assure me that I will never forget him. —Michael Hirsch, Allentown, PA

Brain & Life did an outstanding job with the August/September 2023 issue. All the articles helped me understand my grief—my husband of 50 years died from Lewy body dementia two years ago—and process it. —Mary Jo Belmont, Olympia, WA

I have written a grief column every year since my father died in 2005, mostly to help people who don't know what to say to someone who is grieving. I read every word of your excellent issue. —Mary Ann van Osdell, Shreveport, LA

Since my husband's diagnosis of frontotemporal dementia (FTD) in January, I have been experiencing the many stages of grief. Mostly I was angry. I was sad, too, and cried a lot. Now I channel my grief by learning all I can about FTD, trying to increase awareness of this often overlooked dementia as a volunteer for the Association for Frontotemporal Degeneration, and focusing on caring for my husband. I grieve as he disappears before my eyes. —Debbie Elkins, Winfield, WV

I recently visited with some close friends and saw how much they had declined since my last visit four years earlier. We had a great time catching up, but about 10 days later I felt extremely depressed. This persisted until I talked about my sadness. When I read the editor's letter, I realized I was experiencing anticipatory grief. I haven't shaken my feelings, but I will continue to study what's available in this issue to help me through. —Donald Odell, Henderson, NV

My wife and I were married for 52 years when she died from progressive supranuclear palsy six years ago. Five things helped me during my grief journey: receiving extraordinary support from family and friends, joining a hospice-sponsored support group, journaling, helping others, and eventually meeting a widow through church. Enjoying the company of a widow has given me (and her) a safe place to discuss our grief. —Allen Nixon, Farmington, CT

Before reading the editor's letter and the feature on Anderson Cooper, I had never heard of anticipatory grief. Now I know I went through it last October between my husband's bicycle accident and his death nine days later. This month will be the one-year anniversary of his passing, and I am learning that grief does not go away. I often feel uncomfortable in my sadness around people who have “moved on” and are not sure what to say or do. —Martha Arnold, Ewing, NJ

My wife, Kitt Barnes, died on May 4, 2022, after living with Parkinson's disease for 22 years. I've been mourning her death every day since. The grief issue helped me, as we live in a culture that does not wish to face death. —Michael Martone, New York City

I journal about my grief so as not to burden friends and family. My brother was killed in a road accident when he was 37, leaving behind his wife and four children. Five months later, my father died of pancreatic cancer at age 63. My mother eventually remarried but died not long after of cardiac arrest. As time passed, coworkers, aging aunts and uncles, cousins, and a cousin’s son died, some expected and others a shock. I thought I’d faced my quota of horrific deaths. Then my oldest son, who was 35 at the time, was killed in a commercial airline crash. In 2022, my husband of 64 years died of Alzheimer’s disease after 13 years. Our two remaining sons helped me care for him. They put up double stair railings and bathroom and tub support bars and stayed with him to give me a break. New grief, I'm told, begets old grief. In this mixture of old and new grief, I’m trying to figure out where I belong and how to plan for my short-term future. I’ll be 86 in December.  —Merrilee Morris, Suwanee, GA 

Grief is something that inevitably touches us all, and yet the topic is mostly avoided. Having experienced it intensely for the past six months, I’ve discovered that a grieving person lives a dual existence: public and private. I recently realized the only public venue where death is routinely acknowledged is in a house of worship. Only there have I seen the reality of mortality mentioned and found the freedom to publicly acknowledge the death of a loved one. Perhaps religious institutions should be added to the list of places where grief can be explored. Attending religious services also helps address the social isolation associated with grief. —Joan Liberman, Orlando, FL

After a series of loved ones’ deaths within a short time span, my husband died by suicide. It took me two years to find a grief support group tailored to suicide. I learned two things that gave me peace. The first is that grief never ends—you change along with the various feelings it invokes so you can move forward. The second is not to say, “If only...” Magical thinking doesn't change the facts that you may never know. Instead, say, "At least..." If you remember the good things you will miss, you emphasize that there were good things, memories, love, fun, and togetherness. At least I had 30 great years before a few bad ones. —Marla Hamblin, Seal Beach, CA

In the issue on grief, I wish there had been more about the grief that accompanies a diagnosis. Many of us with neurologic conditions see our dreams and aspirations demolished by a disease we neither asked for nor deserved. We had grand plans—for career and family, exploration, making a difference in the world, education and teaching—only to have those plans stripped from us. I am sorry for others’ grief, but I wish our grief might have received more attention. —Samantha Niemeyer, Chattanooga, TN

After my husband died two years ago, I focused on healing. I attended four grief support groups, read books and online articles on bereavement, and subscribed to the Hospice Foundation of America’s grief newsletter, appropriately titled “Journeys.” I’ve learned three things about mourning. First, there’s no right or wrong way to grieve. Two, there is no timeline. And three, the process is different for everyone. I’ve also learned that life goes on after a loved one dies, and sometimes it helps to talk about sadness with others. —Margie Soffer Wood, St. Louis

My husband was diagnosed with Parkinson’s disease and supranuclear palsy in 2016. Watching him change from an energetic person who was a wonderful dancer to a frail and weak man was so hard on both of us. He died at home in 2020, and a piece of my heart died with him. Two days after his service, I became my 82-year-old mother’s full-time caregiver, until she died at home in 2023. Caring for my mom right after my husband died helped me grieve. Recalling happy memories of my husband before he got sick and happy times with my mom is how I will survive the grief of losing two wonderful people.  —Rita Lucero, Dallas

My best friend died four years ago. I will never stop missing her. I had the privilege of taking care of her in the last few months of her life as she battled lung cancer. In between chemotherapy appointments, we would stop for yogurt, visit bookstores, and shop for clothes. Shopping was a distraction from the inevitable for both of us. Those intimate moments have sustained me these years without my friend. I keep her picture on my bedside table and feel so honored that she wanted to spend her precious time with me. —Susan Fisher, Cleveland

I’m taking care of my 89-year-old husband at home with the help of neighbors and friends. He was diagnosed with Alzheimer’s disease in January 2023. To ease our burden, I’ve started writing poetry.

I jot down fragments and lines that may eventually find their way into complete poems. My creative space is my own kitchen. Eventually, I plan to gather my writings along with personal commentary into a collection and share it with other caregivers. My anticipatory grief will then have purpose and hopefully reassure others that they are not alone. —Maryhelen Jones, Rio Rancho, NM

When my mother died in 1998, I told myself I didn’t need to grieve because she was so unhappy and wanted to die. Not long after, I had an appointment with my doctor and discovered that my blood pressure was higher than normal. Scared, I called a friend who recommended a grief counselor. Over the course of many sessions, I learned that abnormal feelings while grieving are normal. I also processed my grief by writing letters to important people in my life who had died, including my mother. I’ve come to embrace my grief rather than move away from it. I know that every loss is different and that the process takes as long as it takes. —Elliot Estrine, Oceanside, CA

Pain Stories

The article on pain puts a name to the uncomfortable sensations my wife has had in her right foot ever since she had a brain aneurysm preventively coiled and sleeved almost eight years ago. Now I can tell her caregivers she may have central pain syndrome. I have one request: In the second paragraph of the article, a tumor was described as the size of a potato. In a pathology class I took in college, students were forbidden to use food comparisons, mainly because it’s imprecise. When possible, give metric measurements or standard-size comparisons, such as ping-pong balls, baseballs, or BB shots. —E. Scott Mader, DVM, Leesville, SC

I have osteoporosis and arthritis and cervical stenosis in my neck and find myself in chronic pain daily. I refuse to take any opioid medication because I want to keep my wits about me, and as a retired RN, I am fully cognizant of their side effects. I can’t take a NSAID (such as ibuprofen), per my cardiologist, and rely on extra-strength acetaminophen two to three times a day. To take my mind off my discomfort and give my life more purpose, I have been helping some of my neighbors who can no longer drive and want to stay in their own homes to get to various appointments and shopping trips. A year ago I joined a volunteer group that does this for others. Because of my chronic neck pain, I limit my driving to short trips, and the bulk of my volunteering consists of working in the office, taking requests from members, logging information online, and finding volunteers. —Carol Stutts, Rehoboth Beach, DE

I was diagnosed with central pain syndrome after surgery to treat a bleeding cavernous malformation. I describe my sensations as excruciating freezing, burning, stabbing, and electrifying. I’ve tried anticonvulsants, opiates, prescription topical Lidocaine, and acupuncture—without success. I distract myself by coloring, reading, spending time with my cats, watching birds eat from my feeders, and tending to the potted flower garden my husband has set up to best accommodate my physical disabilities. Until there is a cure, I hope for more research, awareness, and effective treatments. —Patti Gilstrap, White City, OR

I herniated a disc in my back for the first time when I fell on the ice while pregnant at age 20. I learned to live with and manage the pain and went on to a career in nursing. My neck and back got drastically worse while I was working, though. A car accident didn’t help. I have since been diagnosed with a hypermobility syndrome, which explains so much of why I got injured easily. I feel that some experts blame a lot of pain on anxiety. Maybe anxiety is caused by pain and not being listened to by doctors. I’ve managed my pain with the help of various alternative treatments like chiropractic, acupuncture, and osteopathic manipulative therapy. I now have a personal trainer, who has helped me build up strength I never had before. Every person in chronic pain should be able to work with someone like my trainer at an affordable rate, and it should be covered by insurance. It would greatly decrease the number of medications needed and keep people mobile and working. I also must credit my husband, who has let me vent without being critical. Being validated makes a big difference in how you deal with pain. —Sherry Weersing, Thornton, PA

Working the Brain

The reader’s letter in the last issue about brain exercises inspired me to share my own exercise. I take any word and try to make another word using the same letters. Coin becomes icon, cheap becomes peach, and—my favorite—tame becomes team, meat, and mate. —Tom Handrich, Shakopee, MN

Hand Dystonia

Very little attention is paid to those with focal hand dystonia and writer's cramp. As a career administrative assistant/office worker, this has affected my livelihood. I’ve had to make changes in how I use the mouse and keyboard on my computer to continue working. I can no longer write or sign my name as I did pre-dystonia. I have read so many online articles and stories on musicians with dystonia, I believe it's time to show other people who are affected by focal hand dystonia. Please consider shining a bright light on people with focal hand dystonia who are not musicians. —Sharon Shaffer, Front Royal, VA

THE EDITOR RESPONDS: Be sure to read our article on dystonia in the October/November 2023 issue. It provides an overview of this movement disorder.

The Power of a Name

I was recently caring for someone when she started hallucinating. She told me she was seeing pink elephants running behind me and flashes of colored light. Shortly afterwards, she described seeing the American flag along with random veterans. When her son came over, she told him he had garden weeds on his feet and asked him if he’d been working in the garden. She was fully aware the images were not real. She was taken to the local hospital, where they performed standard testing: MRI and CT scans and blood work. Everything came back normal. After hearing about her health—macular degeneration, minimal social life, lack of sleep, poor eyesight—doctors diagnosed her with Charles Bonnet syndrome, [which refers to visual hallucinations that can happen as the brain adjusts to substantial loss of vision].  —Christine Mazzone Trites, Saugus, MA

Raising Alzheimer’s Awareness

I think we need to make Alzheimer’s disease as recognizable as breast cancer with its pink ribbon. I suggest (and have created) a purple elephant. I’ve made lapel buttons for people with the disease and their caregivers. When my mother was diagnosed, I made a button for her that said “I have Alzheimer’s” and a button for me that read “My mom has Alzheimer’s disease.” Both had the purple elephant on them. When people saw our buttons, they were able to react more positively to my mom’s sudden conversations—she would often talk to people, and although she was always friendly and nice, it sometimes led to some uncomfortable situations. My goal is to share these free buttons with anyone who could benefit from them (buttonsforalz@gmail.com). Thank you for all the attention you give to this terrible disease. I hope a cure will soon follow. —Kara Grieser, Merrifield, MN

Life with FTD

Many books and publications have focused on caring for someone with frontotemporal dementia (FTD), but little is written about how the person with the disease feels. I was diagnosed with FTD at age 48, and I am now 62. I was an RN and loved my work, but I lost my job along with my income. I struggled with a new, unpleasant identity. Massive amounts of medications to control my behavior turned me into a zombie. I lost friends and family. People, including family, were yelling at me seemingly all the time. I was frustrated, despondent, and embarrassed. I became so distraught that my teenage son found me in the garage with the car engine on. That didn’t work, so I took way too much clonazepam (Klonopin) at times, just to dull the mental anguish. Finally, I saw a counselor, who really helped get me on the healing side of this whole nightmare. I want caregivers to know we appreciate and thank them even when we are incapable of expressing it. But please don’t discount that we are struggling also. —Anne Ferguson, Sacramento, CA

The Importance of Diet

I appreciated the podcast on how what you eat affects your mental and emotional health, as well as the recent print articles on nutrition, particularly one on ultra-processed foods and another on malnutrition. I wish the magazine would promote healthy eating—in particular, the beneficial Mediterranean diet, which is affordable and easy to follow and adapt—as zealously as it does exercise. —Joan Zorza, Cedar Rapids, IA

Access Points

I really enjoyed the article about the violinist Itzhak Perlman. I could relate to his experiences in hotel rooms—escape doors blocked, grab bars out of reach, and entrance doors on a slant, which are impossible if you use a wheelchair. These are small things unless you are the one trying to get in or help someone get in.  —Ellen Whitney, Plano, TX

Feel the Love

Thank you for making critical scientific data accessible to the general public, with real and captivating stories that we all can relate to. Your work and magazine are improving our lives. —Silas A. Pinto, Providence, RI