A Year Of Living With Dying
By Leah Carey
April 25, 2017
The conversations I’ve had over the past year – with both experts and “regular” people who have been through the death of a loved one – have opened my eyes to many ideas about death that were new to me.
It would be impossible to neatly encapsulate all 25 of these Living With Dying stories in one neat package. Instead, I’ve picked out a few of the ideas and messages that continue to live in my heart.
Thank you for sharing this year with me.
Discussions of death
We began the year speaking with a group of Shambhala (a Tibetan Buddhist tradition) practitioners in the Northeast Kingdom. It is a tradition that speaks about death openly and frequently. One of the most widely recognized texts of the Tibetan Buddhist tradition is the Tibetan Book of the Dead.
The group had recently ushered 64-year-old Michael through his final days with an aggressive cancer.
“Part of our tradition is that it’s important to know that you have died so you can let go,” explained member Bill Brauer. “We talked about it all the time with Michael: You’re dying, you’re dying, you’re dying. Because it was happening very fast and it was consuming him and we didn’t want him to be confused.”
Up until that final moment, though, Shambhalians view the person as fully alive, rather than partially dead.
“Our understanding is that until that person is dead, that person is alive. So we treat that as a living person and a living situation, with all the dignity that comes with being a living person,” said Bill. “We tell ourselves as we’re dying, ‘You’re dying. You’re losing control of your body. Don’t worry, we’ll keep you clean and dry.’ That’s often a point of embarrassment when they start to lose control of their bodies. Now they have to be taken care of … and have their bodies cleaned up. We tell them, ‘That’s natural. It’s okay, you just let go. Because you’re dying.’ So that they don’t get confused.”
Forgive yourself in advance
As a palliative care specialist at Dana Farber Cancer Institute in Boston, Dr. Joshua Lakin has spent a huge amount of time in hospital rooms with families as their loved ones are dying. The most important lesson for these families, Lakin said, is to let yourself off the hook.
“I always tell families up front: just forgive yourself in advance,” he said. “You want to be present, but it’s chaos. You just can’t fix that sometimes. So you just have to be willing to give yourself permission, and give each other permission, to just do your best.”
“Because it’s stressful times,” he continued. “Prepare to forgive each other. That’s rule number one. It’s not going to happen like you think it’s going to happen. You’re going to have regrets coming out of it. Hopefully you’re going to have some beautiful and touching times too. But it’s complicated. So learn to cut yourself some slack from the start.”
He also encouraged family members to stop trying to protect each other from the truth, because the end result is often more pain.
“It’s extremely traumatic for people to find out in the last week that a loved one is dying from something. That’s just hard. It’s not protection. It’s harder on people,” he said. “They’ll say, ‘But I don’t want to put them through it.’ But they’re going to have to go through it. Period. They’re going to go through grief. The more time you give them to do it, especially with you so you can tell them what’s important to you, so you can tell them you love them and tell them goodbye and all these things that are really important. The sooner you start that, the easier it’s going to be for all.”
The words of the dying
Martha Jo Atkins, executive director of ABODE Contemplative Care of the Dying in San Antonio, Texas, spoke with us about the signposts of the death process.
One of them, she said, is the dying person starting to speak about going on a journey.
“Very often I will hear people talking about wanting to go home,” Martha Jo said.
“They will ask where their suitcase is, they’ll ask for their bags. Even if they’ve been in the bed for days or weeks or years, they’ll want their shoes, or the things that will help them travel, or the things important to them,” Martha Jo said. “My dad needed his pocket knife. We would bring it and put it by the bedside table for him and he would calm down. They’re traveling things.”
She also frequently hears people speak about ways to exit their body. “People will talk about leaving the door open – how do I get out of here?”
How to be a good friend when someone is dying
Carol Anne Gillis was the founder of the original hospice organization in Littleton, New Hampshire. She talked about the discomfort many people have when a friend is dying.
A broad offer of help – “call me any time for anything!” – is minimally helpful to a family who is already juggling a million details and emotions at once.
“Offer something specific,” Gillis said. For instance: “If you need a ride, give me a call. If you need a meal prepared, give me a call. If you need someone to stay overnight, I’m a night person, give me a call. Make it a specific category of what you’re offering.”
It can often take less energy for a caregiver to do something themselves than to make phone calls to people who have made general offers of support. That’s why the offers need to be very specific, Gillis said.
“It can’t be this vague thing – ‘Let me know if there’s anything I can do!’ All you’re doing then is making yourself feel really good that you offered.”
Gillis also noted that many people get nervous about sitting with someone who is dying because they’re afraid they won’t know what to say.
In truth, you may not need to say much at all. One of the great gifts a dying patient can receive is the chance to talk without being interrupted, Gillis said.
“It’s got to be in the body language that you’ve got all the time in the world,” she said. “If you do not have time to hear the answer, don’t ask the question. Because we are in such a rushed society, that we say, ‘How are you?’ And we don’t have time for any more of an answer than, ‘Fine.’ And that’s not the way it is with a person who’s dying. If you ask a question, you’re there. You wait for the answer, no matter. And you don’t fill in the silences.”
Death is boring
Finally, don’t begrudge the dying person some excitement if that’s what they need. That’s according to Northeastern Vermont Regional Hospital palliative care doctor Joyce Dobbertin.
The dying person’s loved ones may feel like the death process is a crisis, but not so for the patient.
“Dying can be very boring,” Dobbertin said.
She described times when she’s seen a dying person stir up drama within the family, leaving everyone else “aghast.” But Dobbertin sees something positive in that action. “Dying is really boring, so it’s good to have a little drama here and there!”
She remembers a member of her own extended family who was dying of breast cancer and chose a novel way to cut the boredom.
“She got married 14 days before she died,” Dobbertin said. “She said, ‘I’d much rather be talking to people about my wedding, and planning my wedding with people, than them sitting around and watching me die.’”
LETTERS WE’VE GOTTEN IN RESPONSE TO THIS SERIES
Roberta Chase Bettencourt wrote to tell us about caregiving two life partners through the ends of their lives. She has experienced two very different end-of-life scenarios.
Gary, her partner of 18 years, began rapidly deteriorating due to Alzheimer’s-related dementia.
“As with anything else, the caregiving experience can either be a positive or a negative one (and perhaps even a mixture of the two). I seriously thought I might not survive Gary’s illness; i.e. not knowing if my health would give out or if I could manage to stay one step ahead of him and avoid physical injury in the midst of a dementia-fueled rant. My blood pressure hit 182/96 at one point and life seemed as though it might be a nightmare without end.”
At the other end of the spectrum was her experience, many years earlier, with her first husband, Arthur. He was diagnosed with pancreatic cancer when it was already very advanced and not curable.
“Arthur chose to forego radiation treatments. He wanted to remain as well as he could be for the time that was left to him rather than on his knees in the bathroom paying homage at the feet of the “porcelain god.”
The six-month course of his illness was a precious, bittersweet time for our little family. Arthur remained gracious and grateful to the very end. It was so important to him that I go on and live my life rather than spend it mourning that which was gone and could never be again.
Arthur died at home in his own bed, surrounded by his art work, his books and the family he loved so much.”
Paige Crosby sat with her father at the end of his life last year.
“Grace entered the room. Parkinson’s had taken away so many of his dignities and abilities. Eating was a challenge and walking was now impossible. Toileting was a unique challenge. This gregarious and chatty man now had difficulty make himself understood as his speech was labored and garbled. But somehow in these final days, ‘grace’ had given him the ability to speak with energy and clarity—just what he needed, when he needed it. And talk he did! He talked day and night for the final two weeks of his life, cracking jokes, entertaining the nursing staff, family and visitors. It was rather astounding and exhausting. And so very needed for us all and especially for him.
Near the end, when conversation was over and sleep consumed most of Dad’s time, he would sometimes awaken a bit and look around the room with his eyes in amazement, his mouthed pursed as if to say, ‘OOOOO.’ I asked the Hospice doctor what he was seeing and he looked at me and said, ‘Perhaps his family and friends.’ I certainly hope so.”
Sandy Raynor signed up to become a hospice volunteer, including 10 weeks of training.
“I felt encouraged and anticipated ten weeks of discussions with reading assignments, as if the subject of death could be handled neatly, with a positive spin.
As the training sessions progressed so too the depth of experience where we toured a funeral home, got to know first hand what an undertaker does with a corpse.
But nothing could have prepared me for the real deal, my first hospice client dying of cancer.
I got the call she was in the hospital dying. Sitting by her bed, listening to her struggle to breathe, all I could do was hold her hand and cry buckets of tears. All the training went out the window for me when faced with seeing mortality, close up, personal.
What I learned about myself was the terror of slipping away, of losing sight, sound, speech while fighting the inevitable.
And that now, as I face 70 years old soon, try to make peace with the intense fear, that it’s all part of a natural process.”
Today marks the final entry in the Living With Dying series. It is a moment that I’ve thought about, worried over, and dreaded for the past couple months. Now that it’s here, I’m surprised to find myself at peace. The project feels complete within me.
In that way, it mirrors the final months of accompanying my mother to her death.
I spent countless hours wondering what life would be like AM – After Mom. I worried about my own mental, emotional, and physical health – having spent two years focused almost exclusively on her body and spirit, did I even know how to reclaim my own? I dreaded the day when I would finally have to learn the answers to those questions.
And yet, when the moment came, a sense of peace covered me. Sadness came in abundance as well. But I must admit that there was relief that Mom was no longer in pain and I no longer had to watch her struggle.
Despite the physical and emotional trauma of those final weeks, Mom’s spirit was very much at peace when she left us. The “project” of her life was complete within her.
I imagine that the “project” of her life will always live on in me – I hear her voice and her laugh ringing in my ears every day and I hope I always will.
I am her legacy.
But the struggle is done.
This series is also her legacy, through me.
Thank you for joining me on this journey. Thank you for the numerous letters, emails, and phone calls you have sent in response to these articles.
And thank you for sharing your stories of death and dying with me. I’ve taken excerpts from a few of these reader letters to share.
Please continue sharing – with your friends, your loved ones, your social network. There is healing in sharing our stories, and there is relief in knowing that we are not alone.
Many blessings to you on your journey,