Caring for others while living with MS requires finding balance
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Denise Schnieders, right, poses for a photo with her daughter Hadley. (Photos courtesy of Denise Schnieders)
In recognition of Multiple Sclerosis Awareness Month in March, the MS Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by MS, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MSAwarenessMonth, or read the full series.
Living with multiple sclerosis (MS) shapes every part of my life, but nothing has revealed its edges more clearly than caring for aging parents who are both navigating dementia. My dad Levi lives with my stepmom Vicki, and my mom Dessie is currently living with my husband Dave and me while we work through the long process of finding the right long-term care for her. It is a season I never expected to face this soon, and the weight of it settles in places I didn’t even know were vulnerable.
The stress alone is its own challenge. Caring for a parent with dementia demands emotional energy, patience, and mental space, all while MS requires those same resources. There is no manual for how to stay steady when your body is unpredictable, and your responsibilities grow heavier by the day. I can feel the strain in my symptoms sometimes: The fatigue hits harder, and the spasticity flares when I am stretched too thin. I am reminded that stress does not just feel bad. It works against my health in real ways.
The Schnieders family celebrates Thanksgiving 2025 at home. From left, dog Cali, husband Dave, daughter Hadley, daughter Georgy, and Denise holding dog Tinsel.
But the hardest part is not the schedule or the constant problem-solving. It is the mirror it holds up. Watching my mom lose her independence forces me to confront the possibility of losing my own one day. With MS, the distance between feeling steady today and losing an ability tomorrow can feel incredibly small. Teaching, coaching, driving, walking, the things that make me feel like myself, could shift without much warning. Seeing her struggle reaches a place of fear and grief that is hard to put into words.
There is also the guilt. I know I cannot be her long-term caregiver and also take care of myself the way I need to. MS does not give much room for pushing past limits. Choosing my own health is necessary, but it does not feel easy or simple. Part of me aches at the idea that I cannot do it all, even when I know the decision is the right one.
And then there is the slow drifting of someone you love. The conversations that fade, the memories that slip, the pieces of her personality that feel just out of reach. It is a heartbreak that settles quietly but deeply. Nothing prepares you for watching a parent step further from the present.
Balancing MS with dementia care is complicated, painful, and eye-opening. It has taught me how fragile independence can be, how important boundaries are, and how love sometimes looks like making choices you never imagined you would have to make. It is not easy, but it is real, and it is shaping me in ways I am still learning to understand.
