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Donate NowCaring for my mom, who is living with both Alzheimer's disease and multiple sclerosis, is very hard. My mom was always as active as I was, a very independent woman. To have that independence stripped from her breaks my heart, but I never let her see me cry. Today, any time I am faced with a tough situation with Mom, I focus on loving her and caring for her the way she did for me when I was growing up, celebrating every moment we have together, big and small.
Cross-Country Caregiving
Both of Mom’s diseases are so unpredictable. One day she is fine; the next, she can barely hold her head up.
The times Mom can’t remember are the hardest. The forgetfulness that preceded her Alzheimer's diagnosis began about 8 years ago. She remembers the past, but doesn’t always retain things we shared three days earlier. Today, she perks up after breakfast in the mornings, and is her most alert and active from 11 a.m. and 4 p.m. She experiences fatigue and begins sundowning around 4 p.m., just to pop up at 8 p.m., eager for a movie night and a chat. Lately, Mom has known who I am, but if I show her a clip of me on television, it confuses her. When I tell her, “Mom, I’m an actress now,” she is proud, but still clearly confused. I used to be a high school English teacher, then a choreographer, and I don’t think she understands what it is I do now. I’m currently filming the second season of my show “P-Valley.”
I don’t think we will ever really know what people living with Alzheimer’s or dementia are thinking, moment to moment, so we do everything we can to keep them happy and comfortable. My mom has two in-home caregivers that she loves, and this allows me to be on set when I need to be, and for Mom to be at home with people who are like family.
Memphis to L.A.
I moved my mom to Los Angeles for both the weather and for the level of care we needed. Not only does she have access to therapy for her MS, but the weather is also perfect, since it doesn’t get too hot. Mom gets her vitamin D when she has breakfast on the patio, and enjoys it in the evenings once the sun has set.
STARZ, the network that broadcasts my TV show, is great about letting me go back and forth to see her. Because the show took a pause on filming throughout the pandemic, the silver lining was that I was able to take the time to teach Mom’s caregivers about the intricacies of her care. The last thing I want to do is burn out the two wonderful women I have caring for mom. They share duties so they both can have their own lives, too. Whether you are able to care for your loved one at home, or need to move them into a care home, you have to do what is best for your individual situation. I have learned that each journey comes with its own challenges, and we shouldn’t judge caregivers for the things they can or cannot do. Everyone is doing their best for their loved ones with the resources they have.
Continued Celebrations
I find joy in both the smallest and biggest moments with mom. A big moment was when we got matching tattoos on her 65th birthday, which was all her idea! And this Mother’s Day, mom received a massage day at home, along with her caregivers. Who doesn't like a bit of pampering? When I think about all the things she loves to do, I find ways to pivot to ensure that we can recreate those moments. Mom may not be able to hike, but I can push her in her wheelchair. I am constantly finding new ways to engage in the things me and mom most love.
A few years ago, I took Mom to Miami for a weekend together. She came to the Katy Perry concert I performed in, then we went to an NBA playoff game. It was also our first time at the beach. I made an amazing video with all the pictures and memories from that weekend, and when I showed it to her later, she didn't remember it. I won’t sugar coat it — that broke my heart. People ask me why I document all of these moments, good and bad, big and small, and I tell them: “These are my memories, too.” You never know which days with your loved one will be good ones, and which will be harder. On the harder days, I play recordings of my mom’s voice, her telling me that she loves me. I save that recording for when I most need it.
Life as an Adult Child Caregiver
One of the top pieces of advice I have for other caregivers is to get certified in CPR first aid training; don’t just think you will be prepared if the situation arises. My mom choked on popcorn at the movies once, and I had to perform the Heimlich maneuver while she was in her wheelchair. Moviegoers around me just looked on, not knowing how to help. Being prepared is something that has often served me well.
Be okay with letting go of your pride. There are people out there who will help you, but if you don't ask for help, you run the risk of breaking down if you don’t take time for yourself. Ask a friend, family member, trusted neighbor or caregiver to take on some caregiving hours so you can go out — even if it is just to sit in your car in a parking lot doing breathing exercises.In the past, I have often used acting to cover up how I really feel. Today, I go to therapy, and I can’t say enough about how that has helped me process and cope with our battles against these diseases. Having access to a therapist is something that has really helped me as a daughter and as a caregiver.
I also like to keep my mind and body healthy by cycling and hiking, or just take drives in the car to clear my mind. Even if you have caregiving help at home, it’s often nearly impossible to switch off as a caregiver when the person in need is your parent. We all need a break sometimes; let it be okay to take one.
Living in the Moment
Every day with my mom is so precious. I try never to think: “Oh, I can do that tomorrow.” I document everything and spend as much time with her as I can.I’m not in the dark about the fact that my mom will decline, so living in the moment and being grateful for the moments we do have together is important. She may not understand on Monday that I am an actress, doing everything I can to make sure she is cared for, but on Friday, if I can walk into her bedroom and give her a hug, that is enough for me. I know full well that there will be a moment one day when I won’t be able to do that, so I do it now, every chance I get.
When we celebrate together, moments of just us, I will continue to capture them. Some of these moments are ones I post on social media, and some I keep for myself. The ones I do share are there to let others know that they are not alone on their caregiving journey. I hope sharing my story will help you share yours.About: Brandee Evans is a former high school English teacher and dancer/choreographer who performed with stars such as Katy Perry. In 2020, Brandee began starring in the Starz drama series “P-Valley,” for which she was nominated for the NAACP Image Award for Outstanding Actress in a Drama Series. Follow Brandee on Instagram, where she shares highlights from her career and special moments with her mom, Diana Harrington, 68.