Yes, I write about dying….how we die in America, the choices and problems we face, what can go wrong, and how to make dying personal. I have to tell you this: I learn incredible things every time someone talks about “talking about dying.”
We each express ourselves in different ways and the telling is fascinating to me. It’s like art — each of us looks at the same thing and then draws something completely different from anyone else’s sketch or painting.
It’s the expression that’s so powerful.
Here’s an example. My friend, Dimitry, asked me to tell him about The New Art of Dying and I gave him my best 15-second elevator explanation. Then, what he says next, blows my mind —he not only got what the book was about but his description seemed far better than any I’ve expressed about a book I wrote!
Here’s what Dimitry said:
“Oh, you mean it’s like a wedding planner. You know, weddings are personal, customized, and all about you and what you’re about, your values, your beliefs, and your family. Your book is a dying planner, knowing your options, choosing, talking about it all to make sure your dying IS so very personal.”
Here’s another exchange I want to share. My friend, James, and I were discussing dying care and the gift we can give each other by talking about it.
“It’s like there’s the matriarch of the family who holds the family together. She’s that sweater that wraps around everyone. So, when she’s dying, and there’s been no conversation about how she wants to die, a thread gets snagged and the sweater unravels completely. The family is distraught about what to do without her orchestrating. They’re left guessing and disagreeing about what care she did or did not want. It’s an ending that’s made sadder simply because much-needed conversations didn’t happen.”
What a powerful image!
Thank you, Dimitry and James, for gracefully expressing yourselves.
I hope this blog post helps others find their words for talking about dying.Tags: ACP, ACP Decisions, Advance Care Plan, Dying care, End of Life
Yes, advance directives are about when you are seriously ill or at end of life, but you shouldn’t wait until then. You should have an advance directive (or at least appointed a healthcare proxy) long before that just in case. This way, your loved ones know the care you want and you have someone you love speaking for you when you cannot.
TWO: AN ADVANCE DIRECTIVE CHANGES AS YOU CHANGE
An advance directive form isn’t something you complete and then leave dormant for years. It is, in a sense, organic and living. It evolves, as you grow older, expressing something different from what was stated in its original form. That’s why an ongoing conversation with family is important. What care you’d want at thirty is different from what you’d want at sixty or eighty.
THREE: AN ADVANCE MEDICAL DIRECTIVE DOES NOT MEAN “DO NOT TREAT”.
It means being treated the way you want.
Yes, this post probably oversimplifies all the paperwork and choices around dying care wishes but my hope is it empowers you to create an advance care plan that’s about you and how you want to live life to its end.
You can lead by example. A brother talking to a sister, an adult child to a parent, parents to their children, a husband to his wife, friends with friends.
Just say yes. Have the conversation and a plan about how you wish to die and then….well then, we begin a person at a time to make the taboo around not talking about dying a preexisting paradigm.Tags: ACP Decisions, Advance Care Plan, Advance Directive, Dying care, End of Life
“From the most unlikely of unlikely romances comes a deeply felt, touching humorous exploration of what love and age mean in today’s world. I can’t recommend this book highly enough” —Stan Evans, Emmy award-winning writer, and author of Box of Mustaches
It’s a pleasure to introduce Gregor Collins to you. His memoir about his experience as a caregiver tells so much about the art of aging, the type of care most of us imagine being given, and the experience of dying as a loving leave-taking.
Gregor discovers through Maria what so many of us have forgotten: that end of life is about us, being empowered and living the life you want. A lovely story about how two people grew together and grew through each other. It’s about a friendship where age knows no boundaries. From the giving of care comes this beauty of a story illuminating the pleasures and joy of simply being together.
What were your first impressions of Maria?
“Moments before she shows up in the kitchen I’m sitting with her son Peter thinking of a dozen other places I’d rather be—what the hell am I doing in some old lady’s kitchen, I should be in an audition—and she rounds the corner on her walker, and she suddenly straightens up like a squirrel, and Peter stands up and I quickly follow suit, and then she looks right at me with that radiant smile and with the most delightful, lilting accent I’d ever heard, declares: “And you must Gregor.” I just remember smiling from ear to ear—this woman’s 92?? She was like a character out of a romance novel: elegant, dashing, captivating—right there, she really had me. It was like love at first sentence. From that moment on, for the next three years until her death, we were both utterly fascinated with everything about each other.”
When did you realize how she was touching your life rather than simply yours affecting hers?
“She got under my skin immediately, that was what was so special about our meeting. Neither of us really knew why, and we didn’t care to rationalize why. It just was. From “And you must be Gregor” I knew that I always wanted to be in her life. First off I never really had much of a relationship with my grandparents, so she was, among so many other things, a grandmother to me, although ironically I never saw Maria as an “old lady,” we were kindred spirits; soul mates. What did age matter?
The first walk we took around the block was a big one for me—I saw how precious she was and how comfortable I felt with myself. While we slowly walked she began telling me about her extraordinary childhood, about the Holocaust and her escape, about her aunt and all the famous artists she would entertain at her salons in Vienna—that coupled with the fact that I had never really taken an old lady on a walk! We hooked our arms, we smiled at all the waving neighbors, I helped her navigate around the cracks in the sidewalk and sit on a bench. It felt really good to show affection to SOMEONE OTHER THAN ME for a change; get my mind off my life that was as uneven as the pavement we were walking on.”
What about her is still present with you? How and why did she affect you so deeply?
“I’ve never had someone die that I felt as much love for as Maria, so that I have someone special who lives on inside me is something I really cherish. Her elegance is still so present, her grace, her humor, her wit, her occasional irresistibly naughty charm—she made and makes me a better man. And she treated everyone so well. She spoke to a gas station attendant with as much respect and ardor as she did with a friend or family member. I think that says pretty much everything about her.
It was partly selfish, why she affected me. I needed that unconditional love in my life, I was living such an empty, myopic existence. I needed her as an escape from that. And I think it worked both ways, I was an escape for her. When we were together she didn’t think of herself as an old lady, and I didn’t think of myself as anything but a stable, loving human being. there was no discord, no thought of the past or the future. We were existing in some present, pristine universe where time, age, and identity didn’t matter. I would bet that she often forgot she was in her 90’s. I needed her to show me the man I could be, and that “everything will be okay,” as she’d always like to say. We had a perfect relationship. How often in life can you say that you had a relationship that began and ended perfectly? We had that.”
How has your experience as caregiver changed your thoughts about living? Toward dying?
“I think it was a reminder that to get the most out of life we have to get out of your own head, get out of your comfort zone and reach out to other people; I think the happiest times in our lives are when we are with others, when we don’t feel any passage of time, we are just truly in the moment enjoying the love life has to offer. Every time I would help Maria with the littlest of things and see how much it meant to her—that this young, attractive guy who should be out meeting women or “doing naughty things,” as she’d like to joke—was actually perfectly content and enriched being with her, I would be reminded of that fact that I was right where I was supposed to be.
Maria’s daughter Margie said to me at her funeral: “You were my mother’s last great love.” Her son Chuck still loves to brag to waiters when we go out to dinner: “This guy sitting next to me made the last three years of my mother’s life worth living.” Hearing these things reminds me how lucky I was, how lucky I am.
Re: dying. I threw myself into caregiving not knowing a single thing about medicine—I still don’t. I’m frightened of the whole medical world, doctors, it’s a phobia of mine. I quickly realized that caregiving is really about unconditional love of the patient, not about knowledge of medicine. If I were an employer I’d rather hire a caregiver with no experience who has love in their heart than a caregiver who has years of experience who is cold or disengaged, or treats it like just another job. Especially towards the end of Maria’s life I realized that—even though medicine has its value—love was more powerful, and that her life was prolonged not from pills but from the love she gave and the love she was given. We also kept her young and scintillated, which helped prolong her life. Even at 94 she was still very in touch with her sexuality. Let’s just say that she didn’t mind the fact that she had three young male caregivers who were constantly at her beckon call.”Tags: Accidental Caregiver, Dying care, Gregor Collins
Let’s step back and think about how much the experiences of the dying teach us about it. In 1969 Kübler-Ross published On Death and Dying and yes, it went “viral” for its time. It was groundbreaking, a profound lesson for the living, and was about what the dying have to teach us — doctors, nurses, clergy, and all of us. Now let’s fast forward to Scott Simon, the popular radio host of NPR’s “Weekend Edition Saturday” tweeting powerful stuff for a week last month about everything he experienced in the hospital as his mother lay dying. So if we’re listening and learning from those who are dying, social media is perhaps indeed the next step toward dying awareness and knowing that your wishes for care wanted when gravely ill and near end of life is the care given when the time comes.
The Atlantic’s article in its August publication on these tweets was right on the mark talking about how social media is changing the way we approach death. Some say what was shared by Simon was too personal, too morbid. But there were some who believed this about Kübler-Ross way back when. Perhaps it’s not relevant whether you feel this way or not.
These days there’s already a lot of this kind of sharing of our pain, illnesses, treatments, reactions, and experiences, on occasion or minute-by-minute on platforms like Facebook and Twitter. And we’re sharing our stories on websites such as Conversation Project, What Matters Most, and Compassion and Choices. Illness blogs like CaringBridge and CarePages are yet another way to let others know what you’re going through and getting support and feedback.
The Atlantic article is a good one for sure about the powerful change social media is making toward talking about dying experiences but there’s something that wasn’t said and definitely needs saying. Talking about experiences with dying is not the same as having the talk about dying care.
Here’s one thing particularly significant that Scott Simon shared, “It’s not that I think people should spend a lot of time thinking about death, but that they should spend more time thinking about the fact that our lives are precious and finite. …Appreciate the fact that every second and every hour is utterly precious.”
Oh yes, I totally agree with this and it’s important to realize. And yet, what’s missing from our discussions in social media and its impact on the way we approach death is where this can go to help us face dying and letting go. I believe it’s pointing to more than just social media as a natural extension of “I want to share my illness experience with you.” The bigger extension, larger than life, is whether these scenarios make you look at, reflect, and consider “is that what I’d want”, “what would I do differently.”
It’s taking this abundance of shared moving information to make our life precious to its end. Realizing that having a plan, being prepared to die at any time, having an advance directive, having a proxy, talking about dying care that’s all about you, isn’t just for those who are old and frail or ill but for all of us. That dying awareness is talking about dying over time as you grow inwardly and outwardly.Tags: Dying, Dying care, End of Life, Kübler-Ross, Scott Simon, social media, The Atlantic
Last week my golden retriever Belle and I went to visit our friend Louise Wilson at Atlantic Shores, a continuous care facility in Virginia Beach. We sat quietly in the lobby waiting for her. Others who lived there stopped to pat her head, scratch her tummy, and call her the sweetest things. She’s one of those dogs whose tail wags vociferously and face holds a wide grin.
A man named George came over and sat with us and said, “I have a story to tell you.” I love stories and so he began:
I had a golden retriever named Bobby, bout the same size as your dog. We got him as a pup when I was in my late 60s. Shared years of sitting around and taking long walks. Bobby, my wife, Greta, and I were all growing old together. He had that same smile just like your dog here, Belle. When Bobby was 14 he was having a lot of difficulties — trouble walking and standing. Eating no longer seemed to hold the same pleasure. He was simply old and ailing and in great pain. He looked as miserable as he felt; that smile of his wasn’t there anymore. His eyes spoke volumes and if he could have spoken, words were unnecessary. They would have been redundant anyway.
We decided we couldn’t watch him suffer like this anymore and took him to the vet. We felt it was best to give him peace and put him down. We left heartbroken saying our last goodbyes. We couldn’t bear to stay.
The vet called the next day, “I have something to tell you. Yesterday when you left, something changed with Bobby. He perked right up. We observed him and couldn’t follow through with putting him to sleep. Why not come over here and get him!” We were overjoyed to bring him home.
He was indeed like his old self and his smile was back. He ate a big dinner and curled up at my feet while I read a good book. Next morning, we found Bobby had died that night at the foot of our bed. You see, what happened is Bobby just wanted to come home to die and have us by his side.
George looked at me, “Good story, right?” “One of the best,” I said and thanked him for sharing it.
It truly was a great story how Bobby got his wishes without saying a word. I wish we could do the same about our care wishes when dying but it very rarely happens that way. And our silence on the topic of dying is associated with it being morbid and so we avoid the subject. But we need to have a plan about how we wish to die, where and what we want for care.
Morrie Schwartz, the old professor and humanist in Mitch Albom’s book Tuesdays with Morrie, said some powerful words that speak to the heart of how we die in America and how we don’t want to think or talk about it, “There’s a better approach. To know you’re going to die, and to be prepared for it at any time. That’s better.”
Tags: Advance Directive, Compassion and Choices, Dying care, End of Life