There is one particular low moment as a caregiver that Stacey Dunn, 52, of Seattle, will never forget. Her daughter, Minnie, 26, had been born with autism and cerebral palsy, and in 2019, just before the COVID-19 pandemic shut down the world, she was diagnosed with bipolar disorder. Dunn is a caregiver for five people: her daughter and husband, her parents who live nearby in Seattle and herself (as a three-time cancer survivor).
Minnie was discharged from a local hospital after Dunn was told she could “admit her after she attempts suicide.” That sent her on a desperate hunt to find a hospital that would take her daughter and set up a treatment plan around her dual diagnosis. Finally, after innumerable rejections, she located a facility in Southern California and traveled there with her daughter. Dunn rented an apartment and traded off with her parents to stay with Minnie while she traveled home to receive her cancer treatments. While going back and forth to California, Dunn’s husband, Tim, was hospitalized for internal bleeding. He was later diagnosed with myalgic encephalomyelitis and chronic fatigue syndrome and has never fully recovered. “It was terrible,” Dunn recalls, “because I couldn’t get us all in the same place, and I couldn’t be in two places at once.”
Dunn is white, and her husband is Asian. Minnie, who resembles her father, was also a potential target of the hate and violence unleashed in the Asian American community because of misinformation over COVID-19. “In my case, watching the news or seeing mentally ill people being harassed or arrested, especially if they spoke differently or were having an episode related to their illness, was a daily reminder of what could happen to my daughter if I wasn’t there to protect her.” Dunn ultimately chose to stay in Southern California with Minnie but worried every day about not being by her husband’s side.
Jerri Rosenfeld, 66, is the director of the Ken Hamilton Caregivers Center at Northern Westchester Hospital in Mount Kisco, New York. She works with caregivers at every stage of their journey, including the end stages. “It is essential to listen with a nonjudgmental ear, validating all that the caregiver is feeling, whether positive or negative,” Rosenfeld says. When a family member is suffering or near the end of life, it is perfectly natural for a caregiver experiencing difficulty to have fleeting thoughts about when their loved one will die. Some caregivers need permission to vocalize honest thoughts like, She wasn’t there for me as a mother; now I have to take care of her! These thoughts can bring feelings of guilt and shame, which are a normal part of the caregiving journey.
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Dunn can relate. “The bipolar disease turned my daughter into a monster at times,” she says. “Her extreme anger and mood swings were painful, and most of her emotional outbursts were directed at me. We never stop loving our children, but there were days it was extremely hard to be in my shoes.”
Even though she has accepted her duties as a caregiver, the extreme emotions that surround her each day illustrate something that most caregivers are reluctant to say aloud: While we may fundamentally love the person we look after, that doesn’t mean we always like them. Nor does it mean we embrace all aspects of the task. So how does one show up as a caregiver day in and day out and maintain a sense of sanity if the family member is difficult?
Handling hard emotions
“The one emotion you really have to fight, tooth and nail, is despair,” Dunn says. “Fear, unhappiness, anger and frustration are all hard to deal with, but they are generally motivating in the end. But despair will sap all your motivation and make everything worse.”
Dunn recalls one very low day when Minnie was on the edge of a meltdown and she was trying to get her to eat, pick up her prescription and meet her husband’s needs. She suddenly realized it was her 25th wedding anniversary. “All day I kept telling myself that things would be better and we’d find something that worked. There are days I cling to the hope that Minnie will be able to go to college or we could live someplace where they won’t take her health care away,” Dunn says. And on other days, she developed a mantra that was more common sense than aspirational. “I would tell myself that it didn’t matter how bad it gets — I was ‘badder.’ It was less about keeping hope alive; some days were more about telling myself that I could do this job and I didn’t have to like it.”
Caregiving with secrets
Diane Urban, 77, of Long Island, New York, discovered toward the end of her husband’s life that he had been leading a dual existence. After he suffered a stroke at 91, she became his full-time caregiver while nursing the recent knowledge that he’d been unfaithful.
“I got to a point where I didn’t want to care for him anymore,” Urban admits. “I had such conflicting feelings of resentment, and I knew I was taking it out on him. People noticed I was being snotty, and that made me feel worse.” She was angry at her husband for having confessed and also angry at him for the betrayal. At first she decided to keep it a secret, but then she revealed the truth to her daughter. That act of unburdening opened the door for Urban to describe and deal with her feelings in a helpful and cathartic way.
“We’d been married more than 50 years, and I was embarrassed about the whole thing,” Urban relates. “But when I began to be able to talk about my feelings, I also began to understand that this wasn’t my fault. That ability to be honest with friends, and even the social worker, about how I felt made me feel so much lighter.”
During the end stages of tending to her husband, a friend whose spouse had multiple sclerosis gave Urban a piece of advice that she would frequently call upon: “It’s a matter of attitude,” he said. “You can do this, and it’s not the rest of your life.”
Caregiving through resentment
Sometimes sharing your true feelings can feel like a slap in the face. Rebecca Nellessen, 50, of Algonquin, Illinois, is the full-time caregiver for her partner’s mother, Frances. Nellessen once shared a raw emotion on a private caregiving social media site about her resentment at being woken numerous times a night by the motion alarm in the older woman’s bedroom. Someone then commented that it sounded like elder abuse.
“Talking about your negative feelings around caregiving or feelings about your loved one at certain times is something that seems to be largely frowned upon,” Nellessen says. “But nothing about caregiving is black-and-white. It’s all tough, and people need to understand and respect the strains.”
Frances, 87, is almost completely blind and suffering hallucinations with late-stage Alzheimer’s disease. Nellessen has been her caregiver for nine years, with no vacation and few breaks. She derailed the pursuit of a career after getting a degree in medical billing and coding in order to care for her partner Rich’s mother, who had ceased being able to look after herself after her husband died.
“It was a giant sacrifice to give up my career after I’d just gotten my degree,” Nellessen recalls. “The technology has now changed so much that I’d probably have to go back and take more classes. There are many days, she admits, that she simply doesn’t like Frances, and there are times they don’t speak for a week because something sets them off. “I’ll think to myself, She is never going to die,” Nellessen says. “There are mornings when I’m entering her room and it’s quiet, I find myself hoping that she has died in her sleep. If someone tells you they’ve never had any of those thoughts, they are lying.”
There are frequent occasions, too, that Nellessen has felt zero appreciation from extended family members, including Rich. “There are so many days I am simply going through the motions. I have no empathy left, and if anyone came up to me and patted me on the head to say good job, I might punch them.” The mantra she chooses to repeat on the bleakest days (sometimes out loud) is, “I have no expectations, and I cannot fix her.”
Part of what keeps Nellessen sane is visualizing the time after Frances has passed and she is able to go back to work and have time for herself. “Thinking about the future can bring me joy,” she says. After ongoing practice at feeding, changing and providing medication, Nellessen is actually considering becoming a professional caregiver. She understands that the emotional demands will be very different from those of a round-the-clock, unpaid family caregiver.
Keep Calm and Caregive On
De-stressing tips from the Ken Hamilton Caregivers Center Founder, Marian Hamilton:
- Breaks can be rejuvenating, particularly when you do them with intention. Imagine listening to your favorite music for 15 minutes, calling a supportive friend, watching a TV sitcom, going for a 10-minute walk for fresh air or taking a long shower.
- Think about asking those who might help you carve out some more time for yourself, whether that’s a friend, neighbor or family member. If affordable, perhaps consider hiring professional help. People generally want to help but just don’t know how unless you ask them directly.
- There will be days that you feel everything is out of control. Take the time to sit down and write a list of all that needs to get done. Prioritize the top three tasks to ensure that you’ve addressed the most critical needs.
- Take an emotional vacation, either with or without your loved one. Go through old photos and videos, reminisce about the earlier days, and get absorbed in the happy memories that you’ve built through the years.
- Deep-breathing exercises can de-escalate stress. Close your eyes and envision yourself in a peaceful place (like sitting at the beach or watching a sunset). Practice square breathing: Put your hands on your abdomen, take a deep breath in through your nose and slowly count to 4, hold your breath for 4 counts, and then exhale through your mouth for 4 counts.