Life on Hold
Mary Hughes, 91, suffers from dementia, heart failure and aortic stenosis, which prevents blood from flowing normally from the heart to the body. Her conditions make it difficult for her to breathe, causing her to rely on an oxygen concentrator to give her extra oxygen every day. She can no longer do anything on her own, and spends most of her days in bed.
Her daughter, Tina Canter, has been forced to adopt the role of a caregiver to look after Mary, putting her life on hold to satisfy Mary’s every need. Mary moved into Tina’s house in 2009, and Tina has been caring for her since 2016. Tina does everything for her mother, from clothing and feeding her to helping her move from her bed to her chair. The intense and demanding nature of caregiving makes it difficult for Tina to maintain her own personal identity and happiness away from Mary. While juggling Mary’s needs, Tina works to make time for herself and find ways to adjust to her life as a caregiver.
Mary lies in bed while consuming oxygen from her oxygen concentrator. She used to need it only a few times a week, but now she uses it daily. “In August, the only time she needed her oxygen was if she was going to get up and take a shower,” Tina said. “It was to give her the extra energy to get to the shower. That was the only time we really used it. Now she's using it all day. It's such a huge difference.”
Tina, 56, helps Mary get out of bed while her bird, Buddy, greets her. Tina gets Mary up every morning, helps her to the bathroom and makes her Cream of Wheat breakfast with tea. Tina is Mary’s caregiver, defined as an individual who assists a person with daily activities, usually a loved one or elderly person. Tina was also her father Baden’s caregiver before he passed away in April. Tina said her parents’ decline happened gradually. “It gradually happened,” Tina said. “I would see they weren’t going to their doctor’s appointments, so I needed to step in and start making their appointments. Then they both had significant falls. That was overwhelming, but you quickly learn to adapt because this is what they need. I woke up one day and was like, ‘Holy cow, I’m responsible for these two other people.’”
Tina helps Mary use the bathroom. Every day, Tina helps Mary out of bed and guides her hands onto her walker. She places her hands firmly on Mary’s hips while she shuffles to the bathroom to ensure she keeps her balance. She replaces Mary’s diaper, brushes her teeth and hair, and applies cream to her scabs before returning her back to her bed. Although Mary has been living with Tina since 2009, she did not need this level of help until 2016. When Mary and her husband Baden first moved into Tina’s house, they were very helpful. “My parents were just really good to my family and they would do everything for us,” Tina said. “My dad would mow the grass and mom would clean the house.”
Tina prepares tea for Mary. Tina is a natural caregiver, with a history of taking care of children with special needs and volunteering for the homeless community. Her brother, Gordon, passed away in February at 69 from lung cancer and struggled with mental illness growing up. This taught Tina the importance of treating people with kindness. “My parents always showed me that you have to have compassion for our fellow Americans, for our fellow people out there,” Tina said. “I think that's the core, and I think that's where I will wind up doing something like that.” She also worked in hospitality for 12 years, which is where her need to take care of people and make them feel satisfied came from.
Tina helps Mary get into the car by guiding her hands onto the handle and lifting her body inside. Leaving the house is a rare occasion for Mary, and it only happens when she has mandatory doctor’s appointments. Tina recently thought she might need to take Mary to the hospital. “She was having a hard time breathing and then she started shaking,” Tina said. “It was almost like, you know, when you're so cold you're shivering, and she just couldn't stop. At the same time she like, ‘I can't breathe.’” Tina called the EMT’s and they made sure she was okay, concluding that Mary was having a panic attack. “I think she had a panic attack because she wasn't feeling good, she couldn't breathe and she didn't know what was going on,” Tina said. “She was in panic mode. So I'm grateful that I did keep her home and didn't let them take her to the hospital. She’s doing much better.” She said Mary has good days and has bad days.
Mary and Tina wait for the foot doctor. Although Tina has the 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 and enjoy the outdoors and go for a walk, and I’m not able to do that. However, this is completely temporary. And 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. “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 okay.”
Tina helps Mary as she uses her walker. Tina prefers to help Mary herself because of past issues with hospice nurses. “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 just sit back and take in the aura of the house and then see where they fit in.” Another frustration Tina deals with is waiting around 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 therefore cannot make any appointments or leave the house in case a nurse shows up. “My life is on hold,” Tina said.
Andrellea McNeil, Mary’s hospice nurse, gives her a shower. Andrellea works for Transitions LifeCare and has been bathing Mary for eight months. Every Wednesday and Friday, Andrellea helps Mary out of bed and wheels her to the shower. In the shower, Mary sits on a 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 blowdryer before bringing Mary back to bed. “Even when I get her out of the shower, she’s still gasping for breath and I’m trying to blow dry her hair,” Andrellea said. “I’m doing it quickly because I want to get her back to her oxygen. She’s just so out of breath and 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 McNeil blow-dries Mary’s hair after her shower. She said Mary is an extremely easy patient and that she loves her. Although the Canters can afford this extra help, many families cannot. According to a 2021 Caregiving Out-of-Pocket Costs Study by the American Association of Retired Persons (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 said they have experienced financial setbacks. “We have to be mindful of how we’re spending our money on caretaking,” Tina’s husband, Duane, said. “If we’re going to do it, it needs to be for a purpose. Prior to Andrellea, we had other caretakers, but all we were doing was paying a lot of money and not really getting a whole lot in return. They would just sit on a chair there in case something happened while Tina was out running errands.”
Tristan, Tina’s son, lies with Mary during his visit. He lives in Frederick, Maryland, where the whole family used to reside before moving to Fuquay-Varina, North Carolina. Tristan said he is very close with his mother, and she usually calls him to vent about caregiving. “We talk on the phone a lot, and there's definitely been times she's called me and I can tell something's up,” Tristan said. “She won't just call me crying, but you start talking about it and she'll get a little emotional. We all need that ability to vent a little bit.”
Mary uses her oxygen concentrator to breathe more easily, which has become her lifeline. “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.” 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. I think that in my life, having been the main caregiver of my parents, I've had to accept this role, accepting that my mother's gonna die, accepting that we're all gonna die.”
Tina cuddles with Benji, her 4-month-old Shih Tzu. Tina recently bought another Shih Tzu, Archie, who is 11 weeks old. Tina said they provide unconditional love, which was needed in the house. “They have been a really nice addition to our house,” Tina said. “We needed some puppy love and some four-legged friends.” Andrellea said Tina is putting her time into her puppies to distract herself from Mary’s worsening condition. “I think if she didn’t have the puppies to worry about and she’s sitting there watching her mom deteriorate, and then her dad is in his urn on the little side table, that would make her extremely depressed,” Andrellea said. “None of us live our lives expecting to bury our parents or having to deal with the death of a loved one. I don’t even think there is any kind of preparation anybody could do to get prepared for that transition of life.”
Tina talks with Duane and her neighbor, Craig Munnings, outside her house in Fuquay-Varina, North Carolina. Aside from her friends, Tina 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 engaged six months later. “She was just gorgeous,” he said. “She was the most beautiful thing I’d ever seen and still is. And she was very funny and affable.” He said he is constantly impressed with how she has cared for her parents. “I just have this amazing respect for her for what she does diligently, without fail,” Duane said. “She takes such good care of her parents and she always looked out for their well-being, regardless of whether she would get frustrated. It never stopped her from doing all the duties she needed to do to care for them to the best of her abilities.”
Tina looks through old photo albums with her close neighborhood friend Nancy Sadick before they eat dinner together. 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, and they try to get together once a week for dinner. She is also a part of the neighborhood book club, “The Hens,” 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,” said Nancy. “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 embraces Mary. She said that although her caregiving journey has been challenging, it has also been deeply rewarding. “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.”