In April, when Rivkah Sweedler learned she had late-stage lymphoma with little to no chance of survival, she knew exactly what she wanted to do: she would have the best summer of her life.
With help from Washington’s Death with Dignity Act, Sweedler began planning what the summer would look like, who would be included, how she would pass her final days, and to whom she would pass on her dozens of creative pieces of art.
She also planned when she would say goodbye.
Sweedler was diagnosed in April with fourth-stage lymphoma and from late April through May, friends took turns driving her back and forth for rounds of appointments off-island. Her daughter Jesica Sweedler DeHart said she was determined to hold off making any decisions until all the test results were in.
“Lymphoma runs in our family. She really wanted to have all that information,” DeHart said. “I think she began to see what it would be like undergoing rounds of chemo and radiation”.
As Sweedler was beginning to see what her life might become, her daughter was having her own reckoning. Would she have to quit her job to care for her mom? Would she be able to care for her in an accommodation with no electricity, running water, or an indoor lavatory? One thing was certain: Sweedler was adamantly opposed to moving in with her daughter’s family.
“I think it would have been difficult for her to live with anyone at that point,” DeHart said.
It was a comment her son made that brought everything into focus.
“My son said, ‘I think Nana needs to die as she lived. I can’t picture her doing chemo; it doesn’t seem like Nana. Going every day or every week, back and forth, to be hooked up to a machine,’” remembers DeHart. “This was a woman who wouldn’t touch anything that wasn’t organic! The thought of being pumped through with chemicals was not an option for her. When I shared what my son said, I think it gave her permission to say ‘yes! I am going to die as I lived.’”
Once she made that decision, her daughter said, things fell into place. Sweedler learned she qualified for hospice, something she initially resisted, and once she also discovered that with insurance covering hospice, she would be able to take advantage of Death with Dignity.
In 2008, Washington voters overwhelmingly voted to approve Initiative 1000, the Death with Dignity Act. The Act allows “terminally ill adults seeking to end their life to request lethal doses of medication from medical and osteopathic physicians.” The law also states that “terminally ill patients must be Washington residents who have less than six months to live.”
“The weeks before she died were exquisite,” shared DeHart. “The time we were able to spend with her was incredibly beautiful. In those last weeks, I had a small window to spend with her each day, usually early in the morning. We’d have anywhere from a half-hour to maybe two hours. She’d make her coffee and we would sit and be in the moment, savoring every second of being together so much that I kind of forgot how this story was ending.”
DeHart said her mom was able to “die before she lost her dignity.”
“It was just a few days before she died that she said she was too weak to split her own firewood. She definitely was getting weak and losing her strength, but she was totally lucid and cognizant. She wanted to die before she was bedridden; before she needed someone to feed her or change her. And that was a gift to me, her primary person, not having to go through that phase of dying with hr. That’s a hard phase to go through with someone,” she said.
Recalled her older sister Harriet Sweedler Miller, “She was happier than I’d ever seen her, stronger than I’ve ever seen her. Even as cancer filled her body, she never complained of pain. Perhaps a little discomfort from time to time, but she focused on enjoying every single day.”
Miller remembers her sister as a pioneer.
“As a child, she was a dreamer. One of her favorite stories was Heidi and she grew up with a vision of having a small space in the woods, a vision she manifested in her life,” she said.
How Sweedler ended up on Orcas was a classic example.
It was late summer in 1996 and DeHart was a student at Western Washington University in Bellingham. Before the semester started they took a bike trip through the San Juans and visited friends who were house-sitting on Mt. Pickett.
“One day we rode our bikes to the bottom and hitched a ride up the hill,” said DeHart. “On the way, my friend noticed a man with a walking stick and wearing football cleats and said it was her neighbor App. He invited us back for coffee. By that time he was living on the boat and it looked like it was nearly ready to set sail. We were in our early twenties and enthralled and offered to be his crew when he was ready to take it to water. He took our contact information, which for me was mom’s log cabin in Home, Washington, where she was living, recently widowed. My friend said how impressed he was that he seemed to have everything sorted out for his sail.”
He reportedly replied, “Nope. The only thing I need is a five-foot-tall artistic woman to come with me.’
“By the time I got home, my mother had a dozen letters from him,” DeHart said.
They lived between Home and Orcas for three years. Then, she moved to the island full-time.
She added that the only thing App Applegate regretted asking for was that she would “also be a good cook.”
Sweedler was constantly introducing the family to new ways of living.
Her sister offered, “And this year was no exception. My sister’s intentional approach to her death was an example of how she lived her life. Still, it wasn’t easy. I told her we’re with you and I celebrate where you’re going, but I made the choice to postpone the grieving and be there with her in her joy. And she kept us all in line.”
Apparently, even Shivah, the first phase of mourning in Judaism, wasn’t exempt from Sweedler’s micro-management. According to her daughter, the family had to reschedule the ceremony twice because her mom was still alive. She said the food sounded too good, and it all sounded like too much fun and she wasn’t about to miss out on that.
“‘Don’t make it hard for me to die,’” DeHart says her mother said. “I think it was her last prank on the family.”
One of her best friends, Antoinette Botsford, was an early supporter of Sweedler’s decision to die on her own terms.
“She believed that her years of eating organically and living close to nature prevented her body from getting cancer earlier,” Botsford said. “When the doctor told her chemo might only extend her life by a few months or so, she was committed to having the best summer of her life. And she did.”
Near the end of Sweedler’s life, the song: ”Remember me beautiful” by Brandy Clark became a common theme.
“The words speak to my mom and her life more than anything else,” DeHart said. “My mom was the kindest person I’ve ever known. Many, many people say that about her. She always looked for the best in a person, even when it wasn’t easy to do. But she struggled with a lot of things. When I told her during those final days how beautiful she was, she said ‘Jesica, I have never felt beautiful in my life.’ I was astonished. On her last day, July 31, she started her day wearing the dress she wore to my wedding. I told her she looked absolutely radiant and she said she felt radiant and added: ‘Jesica, this is the first time in my life when I have felt beautiful.’”
Rivkah Sweedler died the way she lived: surrounded by nature, by beauty, by those who loved her and those whom she loved, at home, aware of her life, her family and her friends, and with dignity.
For more information about Washington’s Death with Dignity Act visit https://endoflifewa.org/death-with-dignity-patients/.