How I learned to be open about being a caregiver of a rarely discussed illness. 

STORY BY ALEXANDRA DEYOE / The Hubbard School of Journalism and Mass Communication

Andrea Griffin vividly remembers the blazing hot, cloudless day of her high school graduation more than 35 years ago — not for her own discomfort as she waited hours among 600 classmates in the outside venue, but because of her mother’s patient vigil in her wheelchair. 

Her mother’s multiple sclerosis made it nearly unbearable to tolerate the heat. Griffin said concern about her mother’s diagnosis on that day made her own discomfort pale in comparison. 

“At least for me, it makes me think a little bit differently, like, OK, look at what she kind of went through,” Griffin said. 

For Griffin, and for the hundreds of thousands of others who care for people with multiple sclerosis, the routines of life, such as high school graduations or even a regular weekend of activities, are always divided. 

Multiple sclerosis, or MS, doesn’t just affect the people diagnosed with it, but everyone who loves them. From parents to spouses, children to friends, caregivers of people with MS endure watching their loved one losing their physical and mental independence. In turn, they also find themselves divided, torn and isolated by a disease that few around them understand. 

The average risk of developing MS is 3 in 1,000 people, which means caregivers usually find themselves without much support among their communities as they face a mercurial and unforgiving disease. Remission can offer a reprieve that might be followed by a steady decline or a sudden loss of function. Throughout, caregivers often cope silently.

“Back then I felt like we were pretty isolated,” said Griffin, who grew up in suburban New Jersey. “We didn't know anyone at school who had a family member. And I'm sure they did. We just didn't talk about it.”

MS: An attack on the nervous system 

I didn’t talk about my mother either. 

She was diagnosed with MS shortly after my brother and I were born in 2003. Through my childhood, I heard the letters MS but never truly grasped what they meant until middle school. The explanation given to me was that my mother had short-term memory loss and trouble walking.

Even though my mother and Griffin’s mother shared the same diagnosis, the disease did not present in the same way for them.

Like my mother, Griffin’s mother was diagnosed in her late 20s, at a time when not much research or treatment plans for people with MS existed. Without much to turn to, Griffin’s family depended on each other to help their mom, whose symptoms were spasticity – abnormal muscle tightness – in her legs, making it difficult to walk, slurred speech, cognitive issues, and vision and swallowing problems, to name a few. 

MS starts in the immune system, said Dr. Roslind Kalb, MS Specialists at Can Do MS, a national nonprofit that provides resources to people with MS and caregivers of MS . The immune system attacks parts of the nervous system, namely the protective coating around nerves. From there, these lesions disrupt the system in random attacks that can cause a range of symptoms that differ for each person. 

Melissa Young, a client services specialist at MS Association of America, called MS a snowflake disease.  Symptoms vary from patient to patient that it seems as if they have different conditions, which change over time. 

“What your mom's journey is today could look very different in six months from now,” Young said.

Learning to be vulnerable

Kameron Artley, who lives in the Twin Cities, also has only ever known his mom with her MS. She was diagnosed a couple months after his birth in 1996, but when Kameron was 12, her MS progressed so rapidly that the family struggled to support her. She moved in and out of hospitals and rehabilitation centers until her death in 2021. 

Growing up in Walker, Minnesota, Artley’s home stood at the top of a hill, surrounded by acres of woods. On weekly walks beside his mom’s motorized scooter to the grocery store, his arms full of groceries, Artley found ways to be useful for his mom. 

“I think that's one of those where maybe by nature, if I hadn't lived in that home, in that world, adaptability might not be that number one,” Artley said. 

Artley’s mom persevered through her MS by being a social butterfly and embracing the community around her. She often made Artley and his siblings sit in the front pew at church, just so she could talk to everyone. 

“That taught me that vulnerability is like, OK,” Artley said. 

Despite his mom’s willingness to share, Artley found that few of his peers could understand his mom’s struggle. With a mom unable to drive him, he received fewer and fewer invitations to hang out with friends. 

“I used to get invited to the birthday parties a lot as a kid and growing up. Because I wasn't hanging out with a bunch of people, that became less so — because I was always at home supporting my mom or I just didn't have a ride,” Artley said. 

Embracing the moment

As I grew older, my mother’s symptoms became more apparent as her disease progressed, sometimes confusing us about how to interact with her. She’d routinely confuse facts or words when explaining her thoughts, although her cognition was intact.  My father onced asked her if we should correct her when she misinterpreted things. “Of course!” she said. Deep down, my father said he knew she didn’t want to appear stupid to everyone, from her sisters to the cashiers at the grocery store. 

After years of navigating my mother’s mixups with words and details, it became natural for me to redirect or correct her in mid conversation. Yet I never got over watching others grow more confused as she tried  to converse. In that brief moment before I rescued her with the proper word or context, a small lump in my throat would form. My mom remained undeterred, yet it was always a reminder that others could not see her as I did. 

Her MS symptoms — her memory loss or jumbled words — never hampered her conversations with me. By the time I was in high school, translating and filling in the blanks of her thoughts became second nature to me. With pride, I could work out her meaning with the little context she was able to give me.

It helped that, as my father always said, she had been blessed, or cursed, with the gift of gab.

She’d often come into my room after I’d return from school, work or a friend’s house just to sit and chat with me. Like a revolving door, she filled me in on every piece of gossip on our extended family, old friends of mine whose mothers she still talks to, neighbors, neighbors of neighbors, new friends, old friends, friend’s family, friend’s dogs, my aunt’s mother-in-law, and anyone in between. 

My room became a haven for us. With her sitting on my bed, the faded floral comforter once her mother’s, and me sitting behind my desk, homework still freshly started, conversations flowed. We told each other everything. 

During spring break of my freshman year of college, we found ourselves in this exact spot. Momma, as I called her, was interrogating me about school: How are your classes going? Who are your professors? Are your roommates still nice? You like being at home better than the dorms, right?

As she grilled me, I began to wonder, if my mother had gone to college, what would she have majored in? I asked her as much. The answer came easy to her: nursing, just like her momma. 

My grandmother was the director of nurses at numerous Minneapolis hospitals throughout my momma’s childhood. She asked if I’d remember when my father briefly went back to college when I was 8 years old. He’d suggested sending her to college, too, for nursing. 

She didn’t take up his offer. She told me no matter how many classes she went to, hours she studied, or flashcards she made, her memory would fail her come test day. She imagined she’d fail every time that came her way, wasting her money right before her eyes. 

It was 11 years in the past. Her MS-induced short-term memory loss rendered my father’s offer of college useless. She didn’t even shed a tear when she explained this. 

Her nonchalant attitude made my sadness for her lost opportunity feel useless. If she wasn’t so bothered by this, why should I be? I told my brother, he shrugged. Why didn’t anyone else see how frustratingly sad her situation was? I felt strangely alone in my grief for a life my mother never got to live. I still do. 

No time for ourselves 

For the past 30 years Marina Baudoin, 66, has adjusted to life with her husband, Harry, 74 who has primary progressive MS, which steadily worsens without remission. She mourns the days of being home alone, blasting music throughout the Maryland house at will. Now, with Harry’s MS spreading the numbness from his right to his left side, Baudoin rarely leaves his side. 

“One of the things that a lot of us caregivers realize is that we never have our house to ourselves anymore.”

Baudoin has found ways to combat the onset of isolation that comes with being a 24/7 caregiver by attending MS caregiver support groups twice a month – one is local, the other national. “I cherish those meetings,” Baudoin said. 

Baudoin also walks as much as she can, a regimen she says keeps her physically and mentally healthy care for Harry.  

“When I find that I start getting kind of excited or in a bad way that I just start tensing up. I just grab my dogs and I go out and walk and I go into the woods for two hours,” Baudoin said. 

But nothing can penetrate the isolation she feels, she said. Although Harry’s father and brother also had MS, Baudoin said discussions about the disease were taboo during get-togethers with the in-laws. “How can nobody talk about this?” she said she wondered, at first. “But they didn't. They didn't. They pretty much did what they needed to do.”

Loss comes suddenly 

Talking about MS is important.  I knew that. What I didn’t appreciate until this past summer was how talking can end suddenly with MS. 

On July 1, 2024, my momma lost her gift of gab. 

It was around 9:30 a.m. I sat in the living room watching the CBS morning news. Sunlight streamed through the bay window behind me. The back door was open. I could hear birds chirping. My brother had already gone to work, and my father was downstairs coding. I could hear her coming up the stairs. Then a crash. Did she kick the dogs’ water bowls? 

I found her on the floor trying to sit up, her feet tangled in her tennis shoes and the dog food bowls, her eyes wide behind her pink eyeglass frames. She was still in her powder blue pajamas. 

“Are you OK? Are you hurt?” I asked, grabbing her hands gently. My father was rushing up the stairs, his footsteps like thunder. 

She mumbled. And then mumbled again. Her lips smushing together to make some semblance of words that never came. 

“She's having a stroke,” my father said immediately. “I knew it. Lori, let's go, get up, we’re going to the hospital.” 

She didn’t want to go at first. Eventually she stayed seven days in Methodist Hospital in St. Louis Park. I visited her every day,  at least two hours at a time. 

Today my mother’s symptoms are far worse.  Her pre-stroke cognitive abilities will likely never return. Her speech is still slurred, but she's talking more. I can hold a conversation with her, but I’m still learning how to translate this new voice of my momma. She will have to use a walker for the rest of her life. My father predicts she’ll never be as cognitively sharp as before. 

No one really understands

Griffin said her and her sister’s normal routine was cooking and cleaning for the household and taking care of their mom after school up until their mother’s death in 1993. Despite having good friends and support systems, Griffin said she felt like no one really understood what her mother went through. 

“Back then I felt like we were pretty isolated. We just almost really grew up thinking like, I mean, it sounds silly, but we almost felt like, ‘Oh, there isn't, there's no one in our high school’ that, and I'm sure there was,” Griffin said. “We just didn't know.”

It took me nearly three years of knowing my friend, Max Stark, before I learned his mom had MS too. His mom was diagnosed around 2006 when he was 9. Her MS can keep her bed-ridden for weeks due to intense migraines, leg weakness and Lhermitte's phenomenon, which is brief eclectic-like shocks through her left side. 

Stark said it’s difficult to talk about caregiving for such a rare, debilitating disease when you’re a younger person because though others want to help, they’ll likely not understand your experience. 

“It takes a lot of energy to open up to people about that type of stuff,” Stark said. “When it doesn't pay off, that's just another way for your mind to be like, ‘See, this is why we don't do this.’”

Stark said the reluctance from friends and family to try to understand his mom’s MS created a sense of isolation despite his efforts to be more open about it. Yet, he still shared his story with me — because, he said, he understands the feeling of caring for a mother in a way others cannot fully understand. 

A couple of months ago, I used to get choked up whenever someone asked how my summer went. “Do I tell them Momma had a stroke? About her MS?” was always my first thought. I would backtrack and say some lame, vague comments then move on feeling even more isolated. 

But now, I think I’d like to talk about it.