Handle with care: A caregiver’s story
Former carer David Cooke reflects on his experience caring for his dying wife, highlighting the need for better support for other carers.
Bernice Rodriguez has passed away.
She is 75 years old and has stage 4 breast cancer. She has beaten cancer before, but this time she knows it’s a losing battle. The cancer has spread to the lungs and bones. In reality, she has not made peace with the situation, but she is controlling it as best she can. With the help of her daughter, she completed all the necessary paperwork and doctor’s visits to obtain the medical aid in dying drug, which became legal in California in 2016.
“I recently lost a family member, and they went through chemotherapy, lost their hair, had a chronic illness for six months, and eventually passed away,” Rodriguez told USA TODAY. “So, yeah, that wasn’t even on the table for me.”
Rodriguez now has a prescription that he can fill and deliver whenever his condition worsens. For her daughter, Teresa Rodriguez, the whole process was a nightmare. As the eldest of her siblings and cousins, she said she was forced to take on a role she “didn’t really want” by sharing information about her mother’s health on a daily and weekly basis.
“There’s so many emotions going on with this whole thing, because it’s heavy. You don’t want to deal with unexpected sadness and disgust and all this crap, you know?” she said. “But all my mother’s wishes have been fulfilled.”
Medical assistance in dying has long been controversial. One of the most famous cases involves 29-year-old Brittany Maynard, who died in 2014 after being diagnosed with a fatal brain tumor. While medical advocates, including Maynard’s widow, are adamant that the drug allows patients to die with dignity before suffering unimaginable pain or death, opponents of the treatment are wary of malpractice and manipulation. Patient safety is a top concern for opponents, Katie Kelly, policy advisor for the anti-abortion advocacy group Americans United for Life, previously told USA TODAY.
But perhaps more complex than the national debate over medical assistance in dying are the delicate feelings of families facing the issue head-on. Bernice Rodriguez said her husband pushed back when she mentioned medical assistance in dying.
“I don’t think he’ll ever (get it),” she said. “I don’t think he can do it.”
Teresa Rodriguez, who helped her mother through two-and-a-half months of paperwork and countless doctor’s visits to get the drug approved, doesn’t want her mother to die. She had to deal with her own grief and stress, all while breaking the news to her mother’s friends and family, dealing with questions and anger from those closest to her mother, and planning a final goodbye with her mother’s loved ones.
Teresa Rodriguez said, “You have to meditate a lot, you have to breathe a lot, you have to walk a lot in the woods, because this is really hard.” “You must make sure you put on an oxygen mask yourself before helping others.”
Death doulas help families cope
Teresa Rodriguez said she “wanted to throw up” when her mother first told her she wanted to complete the paperwork for medical assistance in dying options.
“For me, there’s always hope, right?” she said. However, she admitted that her mother’s condition was fatal. It was tough to deal with, she said. “The train has left the station. So my priority while my mom is on earth is to make sure she lives her best life while she’s here.”
Author Tom Slay, whose forthcoming book Rosie chronicles his mother’s journey to death with medical assistance after she was diagnosed with a terminal illness, also struggled to accept her mother’s decision. He wrote about the pain caused by talking to doctors, writing prescriptions and contacting loved ones “as if planning a birthday party.” And when her duties as a caregiver ended, what followed was emptiness. She died at the age of 97.
“I hated the idea of losing her. I was desperately trying to get her out of it,” Slay told USA TODAY. “But when she asked me to help her, I silently did it, even though I hated the idea.”
Death doula Kristin Comerford works with dying people and their families to prepare them for the difficult moment and the grief that comes after. She helps patients grapple with the emotional, mental, and spiritual aspects of death, resolves unfinished business, finds forgiveness, lets go of regrets, completes funeral plans, and provides closure at the end of life.
“We think of death as a graduation. It’s like a graduation from a full life,” Comerford said.
She said she has provided end-of-life counseling for more than 70 families, five of whom chose medically assisted death. Her website provides practical guidance for families seeking medical assistance in dying, as well as commentaries that offer tips on how to make the process go as smoothly as possible.
“They want to go when they’re still alert and feeling like they’ve got everything tied up. Often there was a party the day before, or in the case of my patients, a party the day of,” she said. “Everyone was there, he took his medication and was on his way.”
Ms. Comerford has worked with families who are struggling to accept that their loved one has chosen medical assistance in dying. She helps them try to see things from the perspective of their dying loved one. She asks them, “What decision would you make?
“A lot of times when we let them in, they say, ‘Oh, maybe I wouldn’t do that, but now I can respect their choice,'” she says.
For Bernice Rodriguez, having her medication on hand is less of a plan and more of a peace of mind. Although she may not use it, she said it’s nice to know she has options if things get bad.
Comerford stressed that medical assistance in dying is not suicide.
“They’re dying anyway,” she said. “All we’re doing is transitioning maybe a month early. So it’s really not a big deal. We’re doing it before it becomes unbearable and our loved ones are taken over.”
Sorey doesn’t see it that way. He still calls his mother’s death a suicide and uses that term in his memoirs. He says death is deeply personal and he doesn’t want to criticize his mother because of how she died. Still, he said he still feels guilty for helping obtain the drugs that took his mother’s life.
“Sadness…” he said, speechless. “It’s one thing to see someone die, but it’s another to feel deeply involved in it.”
“What is your wish for today?”
Teresa Rodriguez said her mother was “in a sweet spot” in early April. Although her body is failing, she said she is feeling great thanks to painkillers.
Bernice Rodriguez is spending her last few weeks entertaining a revolving door of friends and family. She gives away her clothes, jewelry, accessories, and photos taken over the years. Teresa Rodriguez said the time they get to spend together is precious.
Teresa Rodriguez said a family reunion is planned for mid-June. Her mother plans to go there, but everyone knows she may not be able to go. The mother’s right lung has closed, followed by her left lung. Rodriguez said she was on high alert for the sudden change in her mother’s condition.
“All I want to do is hold on tight to my mom,” she said. “I want her to know how much I love her. So traveling really sucks. But I’m so honored to be able to spend time with her…and say, ‘What is your wish today? What can we do? What joy can we bring you today?’
Madeline Mitchell’s role covering women and the care economy for USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.
Contact Madeline at: memitchell@usatoday.com and @maddiemitch_ With X.
