Stroke Recovery Tips for Caregivers: A Mother and Daughter Share Their Journey

When I think about who's been with me through the hardest moments of my stroke recovery journey, one person immediately comes to mind: my mom, Donna.

For National Family Caregivers Month this November, I had the privilege of sitting down with my mom for a special Cionic community webinar. We talked openly about her experience as a caregiver, what she wishes she'd known, and the lessons we both learned along the way. What emerged was a conversation full of honesty, hope, and practical wisdom that I wanted to share with our Neural Sleeve community.

The Day Everything Changed: My Stroke and Surgery

It was May 2017. I had just graduated from Georgetown University, excited to launch my career and start my adult life. Instead, I found myself in a hospital ICU, scheduled for brain surgery to remove an arteriovenous malformation (AVM) that had been a ticking time bomb in my brain that was discovered when I was 15.

The preoperative procedures caused a massive stroke. The last thing I remember before losing consciousness was crying to my mom in the ICU, telling her it was the worst pain I'd ever felt. And I have a very high tolerance for pain.

"You've suffered migraines for many years, and I know you have a high threshold for pain," my mom recalled during our conversation. "I mentioned to the nurse that you have a high threshold for pain. Can you give her something? And the nurse said, 'They just did something to her brain. Of course it hurts.' But I said, 'I think this is different.'"

She told them two or three times. Then my eyes started fluttering, and I passed out.

My neurosurgeon had just left for the night. They called him back. His words to my parents were sobering: "The situation is grim."

When I finally woke up from a medically induced coma, I was completely paralyzed on my left, dominant side. I had severe cervical dystonia which caused my head to tilt to one side. I couldn't breathe on my own. None of us knew what my life would look like moving forward.

Finding Hope in Stroke Recovery: Celebrating Small Victories

One of the questions I asked my mom during our webinar was: How did you maintain hope that things would get better?

Her answer surprised me.

"A lot of it was you, because you were extremely positive," she said. "The most negative you were during the whole thing was in the very beginning when they were trying to get you to learn to sit up, to just sit in a chair. You were so exhausted and you could barely do it. After that, I don't know if a light went off in your head or what happened, but you were extremely positive."

She explained that my attitude made everything easier for her and my dad. "For a lot of people, maybe moving your arm half an inch is frustrating because you think, 'Wait, I should be able to move my whole hand.' But for you, it was like, 'This is the best thing in the world.' And that made it so much easier for us."

I'll be honest — I didn't always feel positive. But looking back, I think celebrating those tiny victories became a survival mechanism. Moving my arm half an inch meant something was possible. It meant progress. And progress, no matter how small, meant hope.

Caregiver Self-Care: Why You Must Take Care of Yourself Too

About a week into my hospitalization, my mom almost fainted while visiting me. A nurse pulled her aside and told her something crucial: "You've got to eat. You have to take care of yourself, because you have to be your best self in order to provide the support and care."

It sounds obvious, but it's easy to forget when you're consumed with worry about someone you love.

"For me, it was very good to stay busy," my mom said. "I went back to work part-time at the library after maybe the first two weeks off. I felt like I needed something. You need a break from the caregiving role."

She also emphasized the importance of accepting help — even when it feels uncomfortable. My mom is usually the person organizing meals for others, not the one receiving them. But when two of her close friends didn't ask permission and simply started coordinating support for our family, it made all the difference.

"Sometimes, as someone offering help, you don't ask, you just do," she said. "I'm so appreciative that they did that, because you can't forget about the rest of your family."

From Caregiver Support to Independent Living After Stroke

One of the most nuanced parts of caregiving is knowing when to push and when to pull back.

"Be patient," my mom advised when asked what she'd tell caregivers just starting out. "I think it's hard to know the balance of pushing your patient, but also being empathetic and understanding. You do want to encourage and keep pushing, but you also got to have your limits and understanding when it's too much."

For us, goal-setting became the key. I'm naturally goal-oriented, so I'd set specific targets: walk without the cane by my neurosurgeon follow-up in September, make it up the hill in our neighborhood without stopping, be able to carry my own groceries.

We practiced constantly. We joined the mall walkers club and went to the shopping center before it opened because it was indoors and flat. We practiced crossing streets, opening different types of doors, navigating stairs. Every scenario I might encounter living independently became something we worked on together.

Some of those early attempts were humbling. I remember not being able to make it up the hill in our neighborhood without stopping. I remember walking down airplane aisles, terrified I'd hold up the line. I remember reading for two minutes and getting a splitting headache.

But we kept building. A little more each day. A little further each week.

The Transition to Independence

About two years after my stroke, I moved out of my parents’ house to an apartment in Helmetta, New Jersey — about 45 minutes from my parents' house.

"I was scared to death," my mom admitted during our conversation. 

"I knew I wanted to say, 'No, you can't,' but I knew that I could not do that. It was time, and she would just have to go and figure it out," she said.

They helped me prepare as much as possible. We did dry runs of everything — laundry, crossing streets (especially challenging with my peripheral vision loss), opening doors, planning routes to the grocery store, figuring out how I'd carry things home.

"Those first days, I was a little nervous about it," my mom said. "But I knew she had to do it, and if she really needed help, she would call."

A year later, I moved to New York City. That was a whole different level of independence. Now I'm starting my third year here, navigating one of the busiest cities in the world with hemiplegia and vision loss. Do I occasionally run into people because I don't see them? Yes. But I've learned to advocate for myself, plan my routes, and build a life I love.

Travel: Just Try It

One piece of advice my mom offered that really resonated with everyone on the call was about travel.

"Just try it. Just go for it," she said. "Especially if you're flying, people are so helpful. Yes, it's scary. Doing it for the first time is going to be scary, but just try it."

She was talking to a couple on the call who were hesitant about traveling because one of them uses a wheelchair. But her advice applies to anyone living with mobility challenges who wonders if travel is still possible.

It is. It absolutely is.

My first big trip post-stroke was to California about a year after my stroke. My parents came with me because they weren't sure I was ready to fly alone yet, but it opened the door. The next year, I flew internationally for the first time — to London and Dublin to visit my sister who was studying abroad and my best friend who lives in the UK.

Since then, I've traveled extensively, and my Neural Sleeve has transformed how I navigate the world. This January, I'm heading to Utah. In September, I'm leading a group trip to Greece.

Every first trip is nerve-wracking. Walking down the airplane aisle. Navigating unfamiliar airports. Carrying luggage with limited use of one side of your body. But each time you do it, it gets easier. And the world is too beautiful not to explore it.

What Inspires the Next Step

I like to end our Cionic calls with this question: What inspires you to take the next step?

When I asked my mom, her answer made me tear up.

"A lot of it is you inspire me," she said. "Just with all that you do for the community, all that you've accomplished, it's been pretty amazing to watch your journey and be part of it."

The truth is, we inspire each other. My mom's steady presence, her patience, her willingness to practice the same walking route over and over, her ability to balance pushing me forward with understanding my limits—all of that made my recovery possible.

But caregivers need inspiration too. They need to know it's okay to take time for themselves. They need support groups and understanding friends. They need permission to feel scared and overwhelmed and exhausted. They need to celebrate the small victories alongside their loved ones.

And they need to know: you're not just helping someone recover. You're showing them that life after stroke, after MS, after any major health event, can still be full of possibility, adventure, and joy.

Moving Forward Together

Looking back on eight and a half years since my stroke, I'm struck by how much my relationship with my mom has evolved. She's not just my mom — she's been my advocate, my physical therapist, my cheerleader, my reality check, and my partner in this journey.

She's also taught me what it means to show up for someone, even when you're scared. Even when you don't have all the answers. Even when the road ahead looks impossibly hard.

During our webinar, someone asked when my mom started to feel like we were finding a "new normal." She said it wasn't a single moment but rather a gradual accumulation of small victories. Learning to walk with a cane, then without it. My head straightening after being tilted for months. Making it up that hill in our neighborhood without stopping.

"Just all the little things," she said. "And having the whole family to share it with was always fun and a huge victory to celebrate."

That's what I want other caregivers and survivors to know: recovery isn't linear, and it's rarely dramatic. It's made up of tiny, hard-won victories that accumulate over time. It's made up of showing up, day after day, even when progress feels impossibly slow.

But those small steps add up. And before you know it, you've climbed a mountain you never thought you could.

If you're a caregiver or stroke survivor, I'd love to hear your story. Email me at maddi@cionic.com or connect with us on social media. And if you're interested in learning more about the Cionic Neural Sleeve and how it could help you regain mobility and independence, you can start here.

Thank you to everyone who joined our National Family Caregivers Month webinar. Your stories, questions, and support mean the world to our community. And Mom — thank you for everything. Not just for being my caregiver, but for being my inspiration.