Life on Hold
Her breaths were staggered and weak. The task of breathing was no longer automatic, she had to focus on each individual wheeze to force the air out of her lungs. Inhale... Exhale... It was becoming more difficult every day.
She uses an oxygen concentrator. A few months ago, she only needed extra oxygen a couple times a week. Now, she uses it daily.
Mary lays in her queen-sized bed, under her fuzzy gray blanket and purple sheets, dressed in a white floral nightgown with pink roses and lilies. Her snow-white hair is so thin that her scalp peeks through, and her wise wrinkles reveal she has lived a full and plentiful life. Her skin is ashy and creased, with blue and purple veins spidering across her hands. Large, red scabs cover her knuckles, begging to be picked.
Her daughter spends every waking second with her, being her lifeline as Mary can no longer do anything on her own. Tina, only 56, has paused her own life to take care of Mary’s. They both share pale blue eyes, but Tina’s black curly hair and diamond stud nose ring sets them apart.
Mary Hughes, 91, suffers from dementia, heart failure and aortic stenosis, which disrupts the flow of blood from her heart to her body. Her daughter, Tina Canter, has become her primary caregiver. The demands of caregiving make it difficult for Tina to maintain her own identity and happiness. She struggles with mental health issues and faces financial barriers due to the limited resources caregiving offers. Though rewarding, Tina’s role is emotionally and physically draining, and she works to balance caring for Mary with finding time for herself.
Tina is not the only one facing this issue. According to the U.S. Department of Health and Human Services, more than 53 million Americans assist the independence of an older person or person with a disability, with this number growing exponentially every year. Everyone will either become a caregiver or require care at some point, highlighting the need for conversations about the lack of resources in this universal field and the challenges caregivers face.
“You can see she’s really suffering,” Tina said. “She can’t get her breath out and that scares the shit out of me. I do not want to watch her die, and that’s what I am struggling with. I want to think I am strong enough, but I haven’t been put in that position yet.”
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Inside her gray wooden house in Fuquay-Varina, North Carolina, Tina starts each day at 7 a.m., making Lipton Black Tea for Mary. Tina helps Mary out of bed and guides her to the bathroom, placing her hands firmly on Mary’s hips to ensure she keeps her balance. Tina changes Mary’s diaper and brushes her teeth before moving her to her cream-colored lounge chair. The chair, decorated with a floral throw pillow and blanket, is adjacent to her pink dresser, with Mary’s husband's urn displayed on top. This does not stop Mary from wondering when Baden will arrive home, frequently asking Tina where he is.
Tina makes Mary breakfast, Cream of Wheat, with exactly one cup of water and one cup of 2% milk. While Mary eats, they watch “The Price is Right” together, an episode Tina has seen several times. After breakfast, Tina turns on Mary’s oxygen concentrator, unravels the oxygen canula and places it under Mary’s nose. Once Mary is comfortable, Tina leaves her for the first time all morning to take Benji and Archie out, her two-month-old Shih Tzu puppies. While Mary is cozy in her room and the puppies are outside, Tina finally has a second to herself.
Tina is a natural caregiver, always putting people's needs before her own. Nancy Sadick, her close friend from the neighborhood, said Tina is one of the kindest people she knows.
“Tina never ceases to amaze me,” Nancy said. “She is this amazing, giving, loving, wonderful soul. She giggles a lot. She wants the world to be happy and tries to make people happy all the time. Even with how busy she is, she always has time for me and is always, ‘What do you need?’”
This want to help others has followed Tina in every aspect of her life. She has a background working with children with special needs at Whittier Elementary School in Washington, D.C., where she worked for seven years while living in Frederick, Maryland. She and her husband Duane raised their two sons in Maryland and lived there for 22 years before moving to North Carolina in 2021. Tristan, 29, and Kieran, 25, both still live in Maryland.
Tristan described Tina as a giver. She has spent time volunteering for the homeless community and even let a homeless woman live in her house for four months.
“She was always the cool mom, but she’s a giver and goes out of her way to do nice things for people,” Tristan said. “Growing up, we always had strangers eating dinner with us or sleeping in our home for a few days. I try to be kind and helpful and to see the good in everyone, and I definitely think that stems from my mom.”
Although Tina has the perfect personality for a caregiver, it has not been easy balancing her own wants and needs.
“I’m not living my true life,” Tina said. “I like to get up and get out of the house early in the morning, enjoy the outdoors and go for a walk, and I’m not able to do that. However, this is completely temporary. If I can suit up and show up during these temporary times, it will give me the power to keep on getting through.”
Tina said caregiving has caused her to undergo depression and has heightened her anxiety. According to the Family Caregiver Alliance, 20% of family caregivers suffer from depression. Nicole Clagett, director of community development and caregiver support at Duke HomeCare & Hospice, said caregivers can pass away before their loved ones due to the stress of caregiving.
“I find it important to stay strong for her,” Tina said. “I have to be a big girl about everything. Sometimes I don’t want to be, but it’s OK.”
Tina goes to therapy once a week and is currently working on anticipatory grief.
“It’s really hard grieving somebody that’s still here, but she’s not, because she’s not the mom that I grew up with,” Tina said. “How do you prepare yourself for one’s death? I think acceptance, that's what you have to do. In my life, having been the main caregiver of my parents, I've had to accept this role, accepting that my mother's going to die, accepting we're all going to die.”
Tina said Mary was an attentive mother and grandmother. Duane, 61, said Mary was the light of the party.
“She was something,” Duane said. “Everybody loved Mary. Everybody. She was so personable with that cute Scottish accent and she would love to go shopping just to kibitz with the women at the counter.” Mary was born in Galashiels, Scotland and immigrated to the United States in 1958.
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Tina isn't the only one looking after Mary. Andrellea McNeil is Mary’s hospice nurse who comes twice a week to give Mary a shower. Audrea Christensen comes once a week to check her vitals.
Andrellea works for Transitions LifeCare and has been bathing Mary for eight months every Wednesday and Friday. In the shower, Mary sits on a little black chair while Andrellea washes her hair and uses a washcloth to wash her body. Going as quickly as possible, she then dries her hair with a blow dryer before bringing Mary back to bed.
“Even when I get her out of the shower, she’s still gasping for breath,” Andrellea said. “I’m doing it quickly because I want to get her back to her oxygen. The shower really wears her out.” She said she has seen Mary’s condition decline and that her showers are much faster now, out of fear that Mary will pass out.
Andrellea said her and Tina have developed a close friendship since working together.
“Tina and them are one of the nicest families that I go to,” Andrellea said. “Tina is so sweet, uplifting and supportive in whatever I’m trying to do.”
Although Medicare covers hospice care in the home, caregiving can still be costly to families. According to a 2021 Caregiving Out-of-Pocket Costs Study by the AARP, the average family caregiver spends 26% of their income on caregiving. Half of the caregivers in the study reported using their own money for household-related expenses and experienced financial setbacks.
“We have to be mindful of how we’re spending our money on caretaking,” Duane said. “If we’re going to do it, it needs to be for a purpose. Before Andrellea, we had other caretakers, but all we were doing was paying a lot of money and not getting a whole lot in return. They would just sit on a chair there in case something happened while Tina was out running errands.”
Tina and Duane have had issues in the past with other caregivers.
“When you have another personality in your home that also has a caregiver background or experience, you really have to find somebody that meets your personality,” Tina said. “It would be best for somebody that’s coming into someone else’s house to take in the aura of the house and then see where they fit in.”
Another frustration Tina deals with is waiting for help to arrive because rescheduling and being on time is constantly an issue. Tina said it is irritating because she is always on standby and cannot make any appointments or leave the house in case a nurse shows up.
“My life is on hold,” Tina said.
Due to the intense time commitment caregiving requires, Tina has to be very intentional when trying to find time for herself to do what makes her happy. She has a close-knit neighborhood community who try to get together once a week. She is part of the neighborhood book club, joined a gym and joined a yoga studio. Tina is very people-oriented and gets her strength from the community around her.
“My friends are very supportive and I don’t think I would be able to get through this without them,” Tina said.
Even during these rare occasions where Tina is not with Mary, she is always on the clock.
“We have a fire pit in our backyard and they come over frequently,” Nancy said. “Tina is always paying attention to the time and she’s like, ‘I gotta go home and give meds,’ or ‘I gotta go home and put Mary to bed. We’ll be back.’”
Tina also leans on her husband for support. Duane said they have a strong relationship and have been married for 30 years. They met on a blind date in 1994 and were married a year later.
“She was just gorgeous,” he said. “She was the most beautiful thing I’d ever seen and still is. She was very funny and affable.” He said he respects her immensely for the diligent care she provides for her mother.
Tina said that while her caregiving journey has been challenging, it has also been deeply rewarding. Nicole said ushering someone out of the world is an intimate and special process.
“Family members often talk about how hard it was, but also how special it was that they were able to be there and to be with that person during that time,” Nicole said.
Despite the hardships, Tina said she feels immensely grateful for the experience.
“My parents were always very selfless people,” Tina said. “At the end of the day, I thank God for the time that we’ve had and I thank Him for her still being here and giving me the energy and the ability to take care of her.”