His sick wife asked him to kill her. Now that she's gone, he says the loneliness is worse.

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2 days ago

His sick wife asked him to kill her. Now that she's gone, he says the loneliness is worse.
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Handle with care: a caregiver's story
Former caregiver David Cook reflects on the experience of caring for his dying wife and highlights the need for better help for other caregivers.
Ever since his wife died in December, David Cook feels like a stranger in his own home.
Cook, 68, keeps busy by volunteering at the airport and at a local literacy program. He goes to church and shares meals with friends. But he spends most of his time in his home office with his dogs Mickey and Bucky, a merle Chihuahua and a Yorkie-Chihuahua mix.
The loneliness 'is a problem,' Cook said, and sometimes he slips into dark, depressive episodes he can only shake with sleep.
He avoids the living room, with the framed photos of the two of them smiling together, the new plush carpet, the television where they'd watch tennis and golf and the ghost of the recliner she used to sit in. Patricia Cook died there, so for now − maybe forever − it's off limits.
'You never know what can set you off. It can be a song or something someone says to you," he said. "And all the sudden you're just down in the dumps.'
Cook was Patricia Cook's husband for just shy of 38 years. For nearly a decade, he was her caregiver, too.
He retired early to care for her, in 2018. His wife had myriad health problems and took a turn for the worse when lymphedema set in nine years ago, causing pain and leakage throughout her legs, which Cook said started to look "like raw meat." Three times a day, Cook said, he sat cross-legged on the floor to dry and wrap her legs, trying to ease her pain and bring her some comfort.
After receiving cortisone injections to treat her plantares fasciitis, she developed an abscess on the bottom of her right foot "that never healed" and kept getting infected, Cook said. He placed heavy plastic and bath towels under the recliner she lived in, to catch the fluids that seeped out of her legs.
When she went into hospice in their living room, adamant that she'd die in her own home, the pain was excruciating.
'She actually, several times, asked me to kill her," Cook said. "And I didn't even have to think about it, I just said, 'I'm sorry.' I said, 'I just can't do that.''
'Do you know how hard that is?' Cook said. 'When someone asks you to kill them?'
Medical aid in dying isn't legal in Wisconsin, where Cook lives. Even if it was, he doesn't think that they would have gone that route in the end. But the Cooks, like so many families dealing with illness and impending death, had some of their hardest conversations toward the end of Patricia Cook's life. And now that she's gone, Cook said he's dealing with even scarier questions that he doesn't know how to answer, like "Could I have done better for her?' and "What do I do now?"
'This has just hit me so much harder than I ever thought it would,' Cook said.
Many family caregivers experience anticipatory grief in the months or years leading up to a loved one's death, said Christina Irving, Client Services Director for the Family Caregiver Alliance. Maybe they've seen their loved one lose cognitive functioning or personality traits. Surely their relationship to one another changed over the course of the patient's illness.
'But that does not then minimize the grief when someone has actually passed," Irving said.
Cook said he wasn't much of a churchgoer when he was younger. But faith was important to Patricia Cook, and they were regulars at St. John's Lutheran Church for years, until her condition made it impossible for them to leave the house. Since she died, Cook said, he's found some comfort there.
The Cooks' pastor, David Bitter, said he checks in with Cook often, through texts or when Cook comes to a service. Bitter said Cook has come every Sunday since his wife died.
'He was homebound, too, pretty much,' Bitter said. "He's going through this, too."
What do you do when your sick loved one asks to die?
Bitter visited the Cooks at their home periodically when Patricia Cook was too ill to come to church.
Patricia Cook had always been very positive, Bitter said. But in those last several months, her condition "took a toll on her" and she started to wish for death.
'She would say, 'I just would like the Lord to take me home,'" Bitter recalled.
She sought his counsel, asking, "Is it wrong to refuse extreme measures?" and "Do I have to take every last medicine?" and "Is it OK to go the hospice route?" Cook sat beside her through all of those worries, Bitter said.
Bitter has been a pastor for three decades. He said he's gotten these questions only a handful of times over the years.
'We are not to be in charge of taking life, that's the Lord's position," Bitter said. But when it comes to refusing medicine that might not even work, he told Patricia Cook, "I don't think you need to worry about that, that you're doing something wrong.'
Jane Ruh, the Cooks' neighbor who helped with caregiving duties toward the end of Patricia Cook's life, said she knew the couple as "very sweet, funny people." But as Patricia Cook's health deteriorated, Ruh said she "was just sick of living like that."
'She made it very clear, she was just sick of it and she wanted it to be done, she wanted it over," Ruh said.
For a lot of caregivers, this request "rarely comes as a big surprise," said Anita Hannig, an anthropologist and author who specializes in end of life care and assisted dying. Those close to the patient see their daily frustrations and the loss of dignity that comes with terminal illness.
So much of the language used to encourage terminally ill patients includes military metaphors, Hannig said. But telling a sick person "you will fight this" or referring to their health journey as "waging a battle" suggests there are winners and losers.
'I wish we would stop using those words and actually meet patients where they are,' she said.
And pain, she said, is rarely the main reason a patient asks to die.
'Nobody should be experiencing continued, prolonged pain or discomfort, especially if they're enrolled in hospice. That's a problem," said Jessica Empeño, national director for clinical engagement at Compassion & Choices, a nonprofit advocacy group that supports medical aid in dying.
That's why Hannig and Empeño said family caregivers shouldn't shy away from their loved one's request to die. Instead, Hannig said, get curious. Does the patient need stronger pain medications? Do they need mental health support? How can the care team help make them more comfortable?
It's easier in the end, Empeño said, if families have a conversation earlier about what the patient wants in their final weeks or days. Do they want visitors? Do they want to die at home? Who do they want to make final decisions for them if they aren't able to make them on their own?
Family caregivers are the best advocates for patients, Empeño said, since they know the patient so well and are with them day in, day out.
'Family caregivers, they play such an important part,' she said. 'There's so much that they really end up being responsible for, and we just don't do enough to support primary caregivers.'
End of life care: 'There's nothing you can do.'
When his wife was sick, Cook did everything: grocery shopping, cooking, cleaning, picking up prescriptions, taking her to doctor's appointments, laundry, walking the dogs, managing her every move and keeping her company. Patricia Cook was a sports fanatic, and Cook did his best to keep up with NASCAR, golf, tennis, and his wife's lifelong passion, the Green Bay Packers.
His wife was larger than him, Cook said, and he dropped her a couple of times while helping her to the bathroom. There were several trips to the hospital, a two-week stay in the ICU and two sepsis scares.
"This all got to feel normal," he said.
Toward the end, he said he had to call 911 every time his wife needed to use the bathroom because he couldn't safely bring her there himself. He knows that's "not what they're designed to do," but he said the paramedics were nice about it.
'Most men in Dave's position, they would have checked out a long time ago," Ruh said. "They would have left. Dave is kind of an exception. There are exceptional men out there, and Dave is one of them.'
The last time his wife was at the hospital, he watched three nurses struggle to get her onto a bedpan. That's when Patricia Cook decided she was ready to go into hospice.
'I thought, 'How is one 68-year-old man with a bad back going to handle this?' But I never challenged it," Cook said. "I said, 'OK. That's what you want, that's what we'll do.'"
When they got home, Cook said the hospice company didn't explain anything to him. He didn't know how to distribute her pain medication and said his wife refused to use the hospital bed that they brought in. That's when Ruh, who has personal and professional caregiving experience, came to help. She said none of the equipment the company provided was useful for Patricia Cook's situation.
'It was a mess," Ruh said. "Poor Dave, I felt bad for him.'
Ruh found a different hospice company for the Cooks and stopped by daily to check on them. When Cook had to leave to pick up food or new prescriptions, Ruh kept his wife company.
Ruh knows that hospice is meant for end of life care, to keep a patient comfortable and happy so they can die peacefully. But she doesn't think Cook had fully accepted his wife was about to die.
'Honestly, I think they were both still in denial," she said.
Cook was fed up and irritated by the first hospice company, and Ruh said he was afraid of the pain medications. That's common, she said. Family caregivers stress about how much to give a patient, and worry that they are aiding in their loved one's death if they give too much medicine.
Patricia Cook was in hospice for nine days. She slipped into a coma after six of those days. Cook administered morphine for her every hour or so. He said he was afraid to go to sleep and miss a dosage. He started seeing double.
He sat with her in the living room, listening as her snores progressed to a death rattle.
'To listen to that for three days and knowing there's nothing you can do," he said. "It was just awful.'
Then, on Saturday, Dec. 14, the sounds ceased.
Cook called the hospice company and the funeral home, and waited an hour and a half for his wife to be taken away.
Recovering caregiver asks, 'Now what?'
Cook said he lost 40 pounds in about a month because of the stress of caregiving. He stopped getting his hair cut or seeing his own doctor. He went four days without a shower.
'I was just so wiped out, and so mentally spent," he said. After his wife died, "I just wanted to sit in a chair and just kind of contemplate all this.'
"All of a sudden, boom, it's over," Cook said. "Now what do you do?'
The Cooks never had children. Cook's two brothers died years ago. Now, he said, he feels "really alone."
He doesn't like being in his home anymore, the place he's lived for nearly two decades. He considered going back to work, but he's not sure that makes sense, either.
'What I'm going through now is far harder than taking care of her," he said. "When I was taking care of her, especially the last few months, I was so busy with all of this that I didn't have time to think about me.'
Loneliness and a sense of uncertainty about the future are some of the most common reactions caregivers have after the person they cared for dies, Irving said. Caregivers might feel guilt, too, especially if they think their loved one was in pain before they died.
Relief is common, too, Irving said − relief that their caregiving duties are over, or relief that their loved one isn't suffering anymore, or both.
'For many caregivers, they have put aside so many aspects of their life before caregiving that it's hard to know how to restart," Irving said.
Soon after his wife died, Cook started a 13-week GriefShare program at his church. The support group met weekly to discuss common struggles people face while grieving.
Jeff Forrey, a senior curriculum writer for Church Initiative, a nondenominational, nonprofit ministry that develops programs like GriefShare to help people in crisis, said more than one million people have been through the program.
In GriefShare, Forrey said, participants get to know one another and encourage each other while going through videos, articles, exercises and bible studies. They talk about normal reactions to grief, like anxiety, anger, loneliness, identity issues and regrets. They also talk through what the future looks like without the person they love and how relationships with other friends and family members might change, too.
'It allows them to see the wide variety of possible reactions that are a part of normal grief," Forrey said.
Cook found comfort in the program, where he said he was the only man among nearly 20 grieving women. He said talking about his experience caring for and then losing his wife was helpful as he tried to process all he's been through.
'You get to know these people," he said. "I was sorry to see it end.'
Since then, Cook has had a couple of virtual therapy sessions. He'd rather see a therapist in person, but he said the wait to get an in-person appointment is at least six months.
'I'm a glass-half-full kind of person. I have faith that everything will be better again," Cook said.
He laughs remembering how his wife, in her final weeks, encouraged him to date again after she died. She told him women will be "beating down the door for you."
"'But don't you get married, or I'll haunt you,'" he said she told him.
His dog Bucky still sleeps by Cook's heart, as he always has. But everything else in his life, Cook said, "is never going to be the same.'
He doesn't regret any moment he spent caring for his wife. When you love someone, he said, it's what you do.
"As tough as it is, it's worth it,' he said. 'I wouldn't have wanted it any other way.'
Madeline Mitchell's role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal Ventures and Journalism Funding Partners. Funders do not provide editorial input. Reach Madeline at [e-mail] and @maddiemitch_ on X.