During the rapidly evolving COVID-19 pandemic, loved ones are stepping up to care for and protect the safety of vulnerable populations. For those affected by MS, COVID-19 is another uncertain and unpredictable concern on top of an already challenging disease.
We sat down with mother-son caregiving duo Leilanie and Noah, to hear about their experiences of caregiving during COVID-19. Through this unprecedented time, they continue to support Michael, the father of the family who lives with MS.
Q: How has your caregiving situation changed since COVID-19?
Leilanie: We’ve always had demanding caregiving duties, but now with COVID-19, they are amplified.
Michael is bedbound, which means we need to assist him with every move. He can still communicate, but physically, he has lost his mobility. Every day, we help him brush his teeth, wash his body, shave his face, get dressed, take his medications on a stringent schedule, and more. Things we take for granted like getting ready in the morning, is hard for someone who is bedridden, so tasks like changing and bathing require a lot of time and typically more than one person.
Even before COVID-19, I was involved in all aspects of caregiving. The personal support workers (PSWs) would come at 10 am and focus on his hygiene care and physiotherapy. After they leave, I give Michael his medication, prepare breakfast, and help him work on his fine motor skills. After that, it’s already lunchtime, and the PSWs arrive again to start the process all over. Shortly after, I would get ready to work my evening shift after the kids come home from school.
The PSWs used to come by three times a day to help us with important tasks, but with COVID-19, I needed to suspend them to limit household traffic. My son is now helping full-time, and although we aren’t on a time restraint, it’s tough work. My girls, Mikeila and Tatiana, who have always been helpful, have also stepped up. Both have been supportive with household chores, such as doing the dishes and preparing meals for the family, which helps me tremendously.
Noah: I’ve been a caregiver since I was in grade four. As I watched my dad transition from using a cane to a walker to a wheelchair, the level of care that was required changed. In the past, he didn’t need any support from me, but as his mobility decreased, he needed help going down the stairs or into the pool, so I would help move his legs one-by-one. When he moved into a wheelchair, I began helping him get dressed, feeding him, moving him into his bed, and getting him out of his wheelchair. In the last few years, he has been bedridden.
Normally, I’m here after school, taking over the caregiving duties when my mom goes to work. I supervise the PSWs in the evening and help with my dad’s exercises that help reduce his spasticity and increase his blood flow. It’s hard for him to get those types of stretches alone because he’s usually lying down or on his side. Without the support of the PSWs, I’m supporting my mom more throughout the day. We’ve been quite busy, but it’s also been nice spending more time with my dad.
Q: As someone who takes care of a loved one with MS, how do you feel about the current COVID situation?
Leilanie: Being a caregiver for 22 years has taught me how to adjust to constant change. When the COVID-19 outbreak happened and we had to isolate ourselves, it wasn’t a far cry for us. Caring for my husband all these years meant having to give up some freedom to do basic things, like having a social life or taking vacation days for myself.
That’s not to say that I haven’t experienced fear or anxiety during this pandemic. In the past, we’ve had a few hospital visits, and it’s always in the back of my mind. If we had to go now, it would be terrifying. We’re all worried about the uncertainties, but we need to remember there’s only so much we can do. We just need to do our part and stay home.
I’ve also been extra-careful that everything is sanitized. We can’t have anyone in the family get sick.
Q: How do you manage through such difficult times?
Leilanie: Our faith is really at the forefront of how we overcome our challenges. Hanging onto faith and hope is what carries us through difficulties, especially during unprecedented times like these.
Michael and I are also best friends, so we spend time talking, watching movies, and laughing. Now that we’ve found TikTok, we’re having even more fun. If I’m not with him, he’s with my daughters or my son. We take care of him, but also spend just as much quality time with him.
Q: Do you have any advice for other caregivers during COVID-19?
Practice Self-care: It’s so important for caregivers to take time for their own health and well-being. Caregiver burnout is a very real thing, and if you aren’t careful, you can find yourself in a negative headspace. It’s critical for caregivers to find time during the day to disconnect and take time for self-care. For myself, I like to spend quality time cuddling up with Michael to a good movie or spend time with my family. If there are days you can’t get to the laundry, that’s okay. Caring for yourself is as important as caring for others.
Ask for help: Don’t be afraid to ask for help. In my early caregiving days, I struggled with this because I always felt that I was a failure if I sought help. Now I know that’s not true. When someone offers you help, take it. Just having family and friends contribute by making meals has helped more than I could have imagined. The app Ianacare has been a really valuable resource to manage my caregiving. It has allowed me to identify and coordinate my caregiving support needs with friends and family, in turn helping me receive practical and emotional support.
Practice gratitude: When I feel stressed, I like to sit down and remind myself of how thankful I am. Being a young caregiver can be challenging because we’re teenagers and we want to go out and do things with our own time, but it’s been helpful to adapt a positive perspective and remind myself why I do what I do.
Organize my time: Over the years, this has helped me. It’s important for me to organize my time and make sure that someone is always home to care for my dad. Whenever I want to go out, I make sure someone is home to supervise the PSW and make sure that all responsibility is being tended to.
Q: What does it mean to you to provide Michael with the support that he needs?
Leilanie: Living with MS can be lonely and isolating if they don’t have a support system. Michael and I have always supported each other. Sometimes, when I’m rushing around, he’ll stop me, grab my hand, and say, “hey, come on. Did you eat?” or “lie with me for a minute.” It makes me feel so blessed to have someone who appreciates me so much. It might look like I’m the one always looking out for him, but he looks out for me too. In fact, he looks out for all of us.
Noah: It’s means a lot to me to take care of my dad because I love him very much, and he loves me too. We’re family and I know if the roles were reversed, he would do the exact same thing. For me, family always comes first and just being there for them no matter what.
Caregiving for a loved one can mean stress, anxiety, sacrifice, and perseverance. It can mean finding resilience during the most challenging of times. Oftentimes, these responsibilities are heightened during a health crisis like COVID-19, and self-care, while important, often takes a back seat.
Our next webinar, led by Afolasade Fakolade, and Rebecca Higgins, will take place on May 28 at 1pm ET, and talk about building resilience for caregivers. The speakers will help refocus and reframe this discussion to focus on manageable, concrete, and realistic ways for caregivers to take care of themselves. Stay tuned for more information on this webinar here.