Stroke Survivor Steve and Care Partner Connie

During the last four years, I have gained firsthand experience of the profound difference a caregiver/care partner contributes to the comprehensive health and overall state of a stroke survivor. During hospital visits, healthcare appointments, time at home, and social engagements, the primary consideration is the stroke survivor. While I do not diminish its importance, it is imperative to note that you are another individual who has survived a stroke crisis.

This month, I would like to share a caregiver/care partner story with you that explains how important your role is and that you are not alone. As you read the story, the part in bold is how the caregiver/care partner made a difference.

Steve and Connie are in their 60’s and were looking forward to retirement. Their children were raised and they are enjoying grandchildren. Both had been in good health with some minor issues. Suddenly, at dinner, Steve started to talk funny and his right side was not functioning as it should. Connie knew something was wrong and immediately called 911.

In the emergency room, the stroke team gathered to save Steve’s life. Connie, while in shock at what was happening, became the key decision maker and provider of information. She provided all the details, health history, and medication. She then needed to call her family and provide information and support for her adult children – still not knowing what to expect.

Steve stabilized and was moved to a hospital bed. His stroke necessitated ongoing physical, occupational, and speech therapy. The plan was inpatient rehabilitation upon hospital discharge. Connie no longer had a plate full of responsibilities, but now a platter.

Navigating the healthcare system was not something she knew. While Steve was working hard to improve, Connie needed to provide support and encouragement for not only Steve but family and friends; even when she herself had no idea of next steps. She was exhausted, and she had no one to talk to that had been in her role and didn’t know what she didn’t know. 

Steve progressed to inpatient rehab and began the work of recovery. He needed to be able to participate at least three hours a day. By evening, he was exhausted. It takes energy to relearn tasks that you once took for granted. While Steve was getting rehab, Connie needed to learn how to provide physical, occupational, and speech techniques at home. She visited daily to ensure she was prepared, but soon realized that when Steve was exhausted or overwhelmed by the results of the stroke, Connie became his sounding board and anger outlet. Even though she understood, she was also dealing with so much that she wasn’t able to share with her life partner.

Connie had little idea what she needed to do at home to prepare for Steve’s arrival. While at home, she needed to assess finances, both of their jobs, and possible retirement, adapting the house, all while dealing with the emotional aspects of the crisis they were dealt with. She was frequently told she was “so strong and so lucky Steve is doing so well.” Though she appreciated the support, she also knew the reality of the situation. She did not feel strong and although Steve survived, he was not the same person they knew before.

Steve and Connie’s journey continues, but their story provides a glimpse of their reality and the role the caregiver/care partner plays during the initial phase.