From Little Sister to Caretaker: She Uprooted Her Life to Help Her Brother Recover from a Stroke

Cheri was home, caring for her infant daughter, when she received an alarming phone call from her oldest brother, Scott. Scott, a healthy lifestyle devotee who did not smoke or drink alcohol, had such slurred speech that Cheri could barely make out his words. Unable to properly communicate, Cheri quickly realized something was wrong and dropped everything to jump on a plane with her daughter in tow to become Scott’s caregiver for the next two and a half months. Today, 21 years later, Cheri shares the story of Scott’s stroke and recovery, and her supportive role, to empower other caregivers to seek out support.

I want people to know that there is support out there for caregivers, and you need to take care of yourself [mentally and physically] if you're going to be taking care of somebody else

Who let you know that Scott had a stroke?

[When Scott called,] I knew something was wrong, but I didn’t know what. Scott had also called my dad, and I learned from him that Scott had a stroke. It turns out that Scott had been on the floor for several hours and had to crawl to the phone to call for help. We both rushed to the airport to be by Scott’s side at the hospital. That day changed everything.

Can you tell us a little more about what Scott was like before the stroke?

Scott was a high achiever in all areas of his life. He was a part-owner of a manufacturing business and was always volunteering. When Scott’s son was younger, the two were always playing soccer. Scott often worked out with a personal trainer and loved the outdoors—everything from camping and hiking to fishing.

Scott is your oldest brother. How did Scott’s stroke affect not only him, but also you and your whole family?

Immediately after the stroke, Scott couldn’t move anything on the left side of his body. After intensive therapy, he regained a lot of mobility, but he’ll never be back to where he was. He was really angry at first. When it all happened, I felt sad, scared and hopeless. I had no idea what this all meant or whether or not he was going to be ok. I remember being relieved he had survived, but knowing he had no mobility and knowing what had happened to my grandmother after her stroke, I was nervous for him. I think that’s part of why this was so hard for my parents.

Can you tell us more about your grandmother’s stroke?

My dad’s mom had always been very involved in dancing and she dreamed of dancing professionally on Broadway. When she was 34, she had a severe stroke and was fully paralyzed. As a result, she could not complete any activities of daily living. My grandfather was her caretaker until she passed at age 56. My dad’s sister was a lot older and helped raise him.

Caregiving is a physically, mentally and emotionally challenging role. How did you cope with it?

I tried to maintain a sense of normalcy, so we developed a routine. I left for Colorado so quickly that I didn’t bring much besides clothes, so I took my daughter to the consignment shop to get the things we needed for her. We went to all of Scott’s appointments—he was going to physical and occupational therapy and then going to doctors’ offices. The physical therapy appointments were really hard for me emotionally. I would just start bawling. The support from the rest of my family—from my husband and our other brother and parents—was really important.

While this was a difficult period, do you have any memories of happy or lighter moments?

Scott had his stroke right before Thanksgiving and he couldn’t wait to get out of the hospital. He wanted to do the holidays really big that year. We made a lot of homemade food at Thanksgiving. He wanted us to start decorating for Christmas right away, and he sent us to the store to buy the biggest artificial Christmas tree we could find. One of his coworkers dressed up like Santa to surprise Scott’s son. That was pretty fun for my daughter’s first Christmas also. One night, after the kids were in bed, Scott and I watched a movie and hung out by the fireplace and that big Christmas tree. That was really nice.

How is Scott today?

While he will never fully recover, he’s happy and healthy and doing really well. He volunteers at the hospital now and his son is all grown up. He’s back to hiking and snowshoeing and enjoying the outdoors. Several years ago, Scott married his physical therapist from the hospital. They love to go 4-wheeling now.

After your experience, what do you want other caregivers to know?

I want people to know that there is support out there for caregivers, and you need to take care of yourself [mentally and physically] if you're going to be taking care of somebody else. The biggest fear of stroke for patients is how their life will change if they survive. It’s really hard to help someone who is dealing with that, and it can be very sad and frustrating because you cannot understand, unless you've been in their shoes. My advice to caregivers is to get support for yourself and that there’s plenty of resources available.

Mitchell S. V. Elkind, MD, MS, FAAN, FAHA, president of the American Heart Association and American Stroke Association, recognizes the importance of caregivers. "We know having support is critical after a stroke, but it's also a key to preventing one,” he says. “Whether you're at higher risk from stroke due to a chronic condition like Type 2 Diabetes or high blood pressure or not, it's important to have people in your corner who will champion your healthy lifestyle and support your goals."

To learn more about stroke, visit the American Stroke Association, a national voluntary health agency to help reduce disability and death from cardiovascular diseases and stroke.

Cheri is an employee of AstraZeneca.