Tag Archives: death

More Americans are dying at home, but family caregivers still lack support

holding hands

Image courtesy of Pixabay.

The New York Times published an article this week that touched on a subject close to my heart. The article explores the impact of new data published this week in the New England Journal of Medicine that found more Americans are dying at home than in hospitals.

On the face of it, this sounds like good news. In poll after poll, the majority of people say they would prefer to die at home rather than in a hospital or nursing home. The tide now appears to be turning, and perhaps returning to a culture which embraces providing end-of-life care at home.

But the major challenge, which I’m grateful to reporter Gina Kolata for highlighting in her report, is the following: “Many terminally ill patients wind up in the care of family members who may be wholly unprepared for the task.”

This is something I’ve written about extensively, based upon my own family caregiving experience. My personal essay, Why Dying at Home is Not All It’s Cracked Up to Be, ruffled some feathers at the time. But my point wasn’t to be anti-home hospice. I think home hospice can be a wonderful service. The problem is that there are not enough home hospice service providers, especially in rural areas of this country. As the New York Times article discusses, this leaves family caregivers carrying the heavy burden of providing medical care for a dying loved one, while dealing with the financial cost and emotional toll of that experience. Most family caregivers are woefully unprepared.

“We have put a tremendous burden on families in the type of care they have to provide and the type they have to pay for,” said Dr. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York.

With my parents, I experienced the worst of both kinds of deaths. My father died in a skilled nursing facility without any family members with him, and my mother died at home, with myself, the only child, providing her end-of-life care but lacking support from limited home health care services.

The New York Times article also discusses another downside of dying at home: pain management. My mother’s pain was not managed as well as it could’ve been in an institutional setting, and that will haunt me for the rest of my life. No one should have to suffer needlessly at the end of life.

If you want to learn more, I was interviewed recently on the challenges of dying at home by journalist Blake Farmer at WPLN, Nashville Public Radio.

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A towering reminder

tree collage

This week marked the fourth anniversary of my mother’s death. I’ve hit that mark where it’s hard for me to believe that it was only four years ago. It seems like a lifetime ago.

But the towering water oak tree in my front yard serves as a sturdy reminder. It has been four years ago since the last time I had it trimmed. The reason why I remember the date of such a mundane task is because it was the day that I realized Mom was dying and that I needed to be with her. I remember the chaos of that day, with Mom getting admitted to the ER again for uncontrollable pain. I was trying to field phone calls with the roaring machinery going full-throttle outside. There was an issue with a car parked on the street and I was being asked to assist. I remember wanting to scream, “I don’t care about the damn car. My mother is dying!”

I recently had the tree pruned again, and the foreman proposed May 21, the day of my mother’s death. Somehow I thought it was appropriate. The tree may very well outlive me. It grows, it sheds its leaves in the fall, occasionally branches drop, and then it is tended to and left naked with knots. It’s akin to how time alters the grief process. One is left raw with some hardened spots, but life continues to grow.

You may never be the same after the death of a parent, but life does go on.

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A reunion with kindness

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I had a chance encounter this past week with a woman who was a true angel to my family several years ago. Sandra went out of her way to care for my mother and myself as my father was dying. She even put her life (and car) at risk, driving through a snowstorm.

Sandra played a role in what was one of the worst moments of my life, but also a moment that helped inspire this blog, The Memories Project.

Over the years, I’ve thought about Sandra and her multiple acts of kindness. Such people seem to appear when you need them the most.

And so it happened that our paths crossed again. You can read about the encounter via my post on Medium or via the Twitter thread below. (Click through to read entire thread on Twitter.)

As I’ve said before, I’m a skeptic, but I’m also not a fool. There can only be so many coincidences. I keep my eyes and heart open for these moments, and try to learn from them. I hope you will do the same in your lives, and also remember that small acts of kindness can have a tremendous impact on a person’s life.

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Odds and ends on grief — Views and Mews by Coffee Kat

I relate to this post so much. We all have our individual ways of coping with grief, but there are some emotions surrounding grief that many of us feel. I’m sharing this post from a fellow blogger who recently lost her beloved cat. Whether pet or person, losing a loved one is hard. If you are struggling through the grieving process right now, you are not alone. Be kind to yourself.

I forgot how much grief hurts. Sounds stupid but it’s one of those pains I try not to remember. It’s both physically and emotionally exhausting, sucking out joy wherever it goes. It’s not always about death. We grieve many things but the commonality is that it is permanent. We don’t grieve the temporary. There are […]

via Odds and ends on grief — Views and Mews by Coffee Kat

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January 10, 2019 · 1:36 pm

“Into the Night: Portraits of Life and Death” a fascinating documentary

Leave it to me to find the heartbreaking, gut-wrenching yet powerful documentaries. While films about dying are always an emotional experience for me, I also find them thought-provoking, which is why I keep watching them and sharing with others.

The latest film I watched is titled, “Into the Night: Portraits of Life and Death.” It aired on PBS earlier this year, but I caught it on Netflix. What I liked most about the film was the diverse range of subjects who were interviewed about their perspectives on death. From people of faith to scientists to a former member of an Islamic extremist group, those interviewed were candid about their thoughts on the meaning of life, death and the afterlife.

I loved the imagery captured in the film, such as a son finding an acorn in the pants pocket of his recently deceased father, or a favorite family photograph of a parent and child on the shore of the beach. There was also an interesting discussion of near-death experiences.

One of my favorite death positive advocates, Caitlin Doughty, is also interviewed for the film. A traumatic brush with death as a young child greatly influenced her life.

The most moving segments were with those who were actively dying. Anyone who has spent time with a dying person knows they often offer an insightful take on their imminent demise. Some people fight death until the very end, but others make their peace with death in order to better appreciate the time they have left.

The overall message I took away from the film is that each of our lives are unique stories, and all stories must come to an end eventually.

Watching such a film made me reflect upon my own views of death, as well as those of my parents. My father, a staunch Catholic, had an intense fear of death. Did his dementia offset that fear, or intensify it? There is no way for me to know. My mother, on the other hand, had a more positive end of life view. She thought we “go to a good place, and a right place,” based upon whatever our views are of the afterlife.

For me, I’m more afraid of terminal disease and the dying process than death itself. I dread the idea of pain, misery and loss of self-control. I also dread the loss of mental faculties, but know that is a distinct possibility, as Alzheimer’s is all over my family tree. I admire those that make peace with death, as I think it is the best way to go. At some point, the fight to live is over, but I don’t see that as giving up. I see that as focusing remaining energy on the life you have left.

If you’ve seen the documentary, I’d love to hear your thoughts.

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Bittersweet birthday memories

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Pixabay

For me, July will forever be associated with birthdays. My mother’s birthday was July 6 and my birthday is July 19.

While birthdays should be filled with happy memories, ever since the death of my parents, I’m left with bittersweet memories. There’s a profound quote in the Netflix documentary, End Game, which is about end-of-life care and hospice, that touches upon what I’m feeling this week.

“Suffering is the wedge, the gap between the world you want and the world you got.”

Even though I didn’t spend my birthday with my parents as an adult, they always sang Happy Birthday to me over the phone. It was a fun tradition, and each year Mom would tell me how they practiced all week to make it special. My parents both had some musical talent, with Dad especially fond of singing in the style of his favorite crooner, Bing Crosby.

The year before my father was placed in the memory care center, my parents performed the best rendition ever of Happy Birthday. My dad was in high spirits that day, and even though he was in the middle stages of Alzheimer’s by then, he hadn’t lost his ability to sing or to ham it up. He continued singing, performing a medley of classic show tunes before Mom was able to get the phone back from him. At the time I thought, “I wish I had recorded this!”

As my birthday approached the next year, I was visiting my parents and Mom and I made the trek to the memory care center to see Dad. He was mobile but heavily medicated. I didn’t expect any birthday singing, but Mom insisted. I was torn about recording it, but I knew in my heart that it would be my last birthday with my father alive. Little did I know then that my mother would be in a care center a year later recovering from cancer surgery.

Even though I knew it would be painful, I decided to record it. I’m glad I did, even though it is heartbreaking to watch. (I rarely share this video, but am making an exception here.)

As to the quote about suffering, what I wanted was the sublime Happy Birthday performance from the year before. What I got was my father, addled with medication and his brain ravaged by Alzheimer’s, trying his best to perform one final time, with my mother trying desperately to be upbeat.

Ultimately, both memories are gifts. They are both filled with love.

 

 

 

 

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The eyeglass whisperer

One of the toughest moments during the frenetic cleanup of my parents’ condo just after my mother’s death was what to do with her eyeglass collection.

My mother’s many eyeglasses were laid out neatly atop the dresser, where she always kept them. Each pair of glasses had its purpose.

mom eyeglasses

A routine trip to the grocery store required three pairs: sunglasses, a pair for walking and a pair for reading coupons and expiration dates. Whenever I was with her, I was expected to know which pair she needed at any given time. I became her eyeglass whisperer, though to be honest, I never did figure out what all of the pairs were for.

She did try bifocals at one point, but hated them. “I feel like a chicken trying to pick up corn,” Mom complained.

So as I moved around the condo in a whirlwind, using the activity to temporarily blunt the grief, my mom’s eyeglass collection brought me to a halt. She had not worn any of the glasses for weeks, since she had become bedridden. While I was purging the condo of many items, I wasn’t ready to part with her glasses. Instead, I put them each in a case and then into a box, which I mailed back home to Atlanta.

I had some hazy notion of turning them into a sort of tribute piece. The glasses sat in the box in a closet for almost three years, when I finally decided it was time to do something with them. I found an appropriate shadowbox and created a simple display of the glasses my mother used most.

The display is now on my bedroom wall, and I’m pleased with the results.

Have you come up with any unusual memorials for loved ones? I would love to hear about them.

 

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