Maegan Pavioni, 30, has been a full-time caregiver for her mother, Andrea Loredo, 71, in Charlotte, N.C., since October 2017. Her mother has bipolar disorder, ulcerative colitis, and physical and cognitive impairments from a massive stroke in 2012. They live in a house with Maegan’s long-term boyfriend, Lucas.
For a long time, Mom seemed younger than she was — that changed after the stroke. She was in a coma for six days and she was diagnosed with cerebral amyloid angiopathy, which causes repeated brain bleeds of various sizes. Her brain was damaged every time it bled and we started seeing some odd cognitive behaviors. She’d forget where she was or she’d do strange things like take all the pills out of her box and reorganize them by shape and color instead of by when she was supposed to take them.
After the stroke, I helped my brother and sister with her care part time. I started caring for her full time in October 2017 because she really needs to have someone with her all the time. I feel extremely fortunate to have a family trust that was set up by my grandparents; it pays my living expenses so I can care for Mom without having to work. But I was in a dark place of sadness and frustration for a while because it was hard for me to stop working in business management. I’ve learned to literally take things day by day.
Now, we typically wake up and see how the day looks for her physically, emotionally and cognitively. I’ll get her out of her overnight clothes, clean her up and dress her, and then I administer her meds. A couple of pills are hard for her to swallow so sometimes I have to crush them up and mix them with baby food. I prepare all the meals and depending on what it is, I may need to feed her because she has extreme tremors in her hands. She loves everything from barbecue to sushi but she has to stay away from dairy and high acid foods because of her ulcerative colitis and she follows a low sodium diet because she has high blood pressure.
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I manage her doctor’s appointments and take her to them. She can use a walker with assistance. Twice a week, she goes to the Ivey, a memory wellness day care center, where she’ll do physical therapy, occupational therapy and speech therapy. While she’s there, I use the time to run errands or take a breath and do what I need to do for myself. If we stay home, sometimes I read to her, but sometimes the interest level isn’t there. She enjoys watching Netflix documentaries, doing brain puzzles on my phone, or listening to her favorite records. There’s nothing better than when she recognizes a song and tears come to her eyes because she’s so happy that she remembers the words, or when she says, “I just love you, baby,” after not talking all day.
My boyfriend, Lucas, works full time. He’s very supportive and understanding about my taking care of my mother, and he has developed a bond with her; sometimes they’ll get goofy and dance together. My brother, Alex, and his family take my mom one day and night on the weekends so Lucas and I can have more time together. Other nights she goes to bed at 8:30, and Lucas and I savor that time together.
Mom and I have always been super close so I knew that caring for her was the right thing for me to do. But when her physical abilities change from day to day or she gets agitated for no reason, that’s emotionally challenging. There are physical challenges, too: She has about 50 pounds on me so when her physical abilities are less than they were the day before or she gets herself into precarious positions, it’s hard for me to move her around or reposition her. I just try to get through the challenges as quickly and efficiently as I can without letting them derail me emotionally.
But at times this role reversal with my mom can feel really bleak. There’s always a part of me that wants to interact with her as my parent, and that doesn’t happen very often. Her needs are increasing more and more. I’m past the point of crying every day but sometimes it just hits me: At the end of the day, I’m still the girl who’s losing her mom.