How Stroke Affects Children–A Focus Group

A stroke is like an earthquake in a person’s life. Everything is upended, and recovery can be long and difficult. Altered, perhaps forever, is the life the stroke survivor used to have. Relationships with spouses and other caregivers will likely suffer.

But what about the kids? Without open, age-appropriate communication about the stroke, children may experience fear, resentment, and even a sense of abandonment. They may bury their feelings and act out in various ways. They may believe the situation is helpless and hopeless. They may even be afraid to ask questions about the stroke, the health of the parent, and how the stroke will change their own lives.

Recently, Stroke Support Association held an online focus group about the impact of a parent’s or grandparent’s stroke and how communication (or lack thereof) with the children and grandchildren can shape their sense of hope and well-being.

The panel consisted of three moderators and seven stroke survivors who regularly attend either our in-person support groups in Long Beach, CA, or participate via Zoom at our online groups.

Below are the questions presented to the panel, along with selected answers from the panelists:

Did either you and/or your caregiver talk with your children or grandchildren about the stroke? How did that go?

• Yalanda: “My sister and I let them know that I was okay, but they just had to be gentle with me, that I might not be able to do all the things that I used to do.”
• Ali: “The concern was ‘What’s it going to be like? Will they understand?’ I sat down with the four-year-old and two-year-old and just said I was on a walker, and that I can’t walk that far right now. They asked me what I was able to do, why it happened.”
• Jireh: “Since my son was so young [just shy of one year old], he really didn’t know what was going on, and it’s just an ongoing conversation we are having now. He is four now and has an increasingly larger capacity to understand. We explain to him that Dad is still Dad, but there are certain things that he can’t do.”

What were the kids’ reactions? What did they say? Did they express fear or other emotions? Do you think they hid their feelings and/or fears? Did they act out in any way?

• Douglas: “My kids were trying to convey their feelings with art and sketches. They were nice and loving drawings. They [my kids] were probably scared.”
• James: “I spoke with my daughter to ask her a little bit about what she said to the kids [my grandkids]. She said that she talked with the kids to calm their fears over time.”
• Fran: “My grandson was timid at first and was very gentle with me. He seemed to accept what had happened without a strong initial reaction to seeing me, but I know it wasn’t easy for him.”

If there was a co-parent/co-grandparent or other relative living with you at the time of your stroke: how did that person handle your stroke? Handle a continuing conversation with the children? Did any stress in your relationship affect the children?

• Musong: “I’m sure it did, but my ex as a co-parent during the process—she is very smart and very particular about what words she said to the kids. I’m sure she played it very safe, but to me I’m not sure if there was enough empathy for what I was going through.”
• Deven: “The conversation she [my wife] had with the kids was: ‘We’re going to work hard and help Dad get better.’ …She was always positive with the kids, but in private, we had conversations about how she was deathly afraid—what if I died? I was not going to be around forever, and we had a mortgage and all these things that needed to get paid, and that really concerned her.”

Did your relationship with your child/grandchild/spouse change after the stroke? How?

• Musong: “We’re currently trying to co-parent the best we can, but she [my ex] knows she is in control of the kids and their activities and my visiting times, and it’s very difficult and frustrating. But I’m still their Dad. It’s tough, it’s very tough. All the dynamics changed.”
• James: “My stroke has put a strain on my relationship with my wife, and it was hard in the beginning…I had to step up my game and try to get better. I realized I was powerless over other people, but I was not powerless over my behavior and my attitude.”
• Fran: “…a stroke survivor has to take a look at [himself/herself] —what’s my ego in this, and how much is it me fighting what is, instead of going with what is and trying to work with it?”

For those who didn’t feel supported by the spouse or relative, did that affect the children?

• Douglas: “The control of the kids is in her [my wife’s] hands, but we still live together. She has always been the driver…[managing] the house…and I was sacrificed. My job of parent and Dad was minimized by her.”

Did your kids or grandkids assume any kind of caregiver role after the stroke?

• Deven: “My adult children stepped in, and my older daughter, the one who was studying to be a CNA, enjoyed the ‘field trip’ aspect of it. She became my chauffeur that first year because I was not driving. Both of my older girls each took over the nights I used to cook dinner.”
• • Fran: “My grandson is 14 now. And he’s turned into quite the little gentleman, helping me get out of the car, opening the door, giving me my cane–all these things that are so sweet. Of course, [as an 8-year-old], he didn’t do that for me at the beginning.”

Did your stroke make activities you used to do with your kids/grandkids impossible or more difficult? How did that affect everyone? Did it impact, even temporarily, your self-image as a parent/grandparent?

• Jireh: “This is something I’m still struggling with…. I always go back to I’m not necessarily good enough because I can’t do xyz. I try now to give myself a little more credit.”

Have you been able to find new ways of connecting and spending time with your children/grandchildren?

• Yalanda: “My youngest daughter will do puzzles or coloring. My middle daughter will give me a rundown of her day and tell me about the school gossip. My oldest daughter [the one who lives out of state] will FaceTime.”
• Jireh: “I’ve found ways to connect [with my son] within my capacity. One of the things I get to share with [my son] is the love of music. He’s taking drum lessons right now. Part of our routine is he will practice a little bit, and I will review what he learned from his drum instructor. Then I bring out my guitar, and we play together. I’ve realized as he grows up and is able to do more, music is something we will always be able to share.”
• Deven: “What’s funny is my wife was a stay-at-home mom for 20 years before she went to work. Now [since the stroke] I am home–I work from home, I never leave, I don’t drive—I am essentially the stay-at-home parent. So, I’m the one who has taken on the role with my youngest kids that she did with my older kids. …I feel more of a connected parent with my two youngest because I’m home and not out working 60 hours a week like I did when I was the sole breadwinner. This has been a nice shift for me.”
• Fran: “There was a major disruption in our relationship because I was not able to have him [my grandson] over for sleepovers or to play with him for many months. It wasn’t until I healed sufficiently that we were able to resume our playdates, with some changes. Many of the physical activities were replaced by indoor activities that we could do together, or he could do himself while I looked on. It was an adjustment. Over time, our relationship was restored and our sleepovers resumed. It just took a lot of time and energy to get there.””

What have you done over time to reassure your young person about your health?

• Jireh: “For me specifically, it’s like an open-ended conversation [with my son] about whether I’m not feeling good that day or have an appointment. The next day I might be feeling better or there is some improvement.”
• Deven: “The kids just see that I am overall healthier, which seems ironic. Before the stroke I was very overweight. I’ve lost about 120 pounds. I had high blood pressure and diabetes. They see [that]Daddy’s skinny and that I am more active …it sets a good example to them that you can change your health for the better.”

If you met a new stroke survivor who was a parent of young children living at home, what would your advice be knowing what you know now?

• Jireh: “I would tell a new stroke survivor parent to give yourself grace and also know that it wasn’t just you who had the stroke; other people have been impacted by the stroke as well in other ways.”
• Doug: “The whole family needs to get on the same page and to be unanimous on that page.”
• Deven: “Be transparent and communicate.”

After the focus group, the moderators made two documents available to the panelists:

• Suggested Next Steps
• Suggested Reading List

Stroke Support Association is grateful to the focus group participants: Ali, Deven, Douglas, Fran (also a moderator), James, Jireh, Musong, and Yalanda. Thanks also to moderator, Gretchen Phillips

To read the full transcription of the focus group and to receive the Suggested Next Steps and the Reading List, email projectmanager@strokesupportassoc.org

—Betsy Hardiman, Focus Group Moderator

Categorized in: Focus Group, SSA News