Picking Up the Pieces: A Caregiver’s Perspective on Stroke and Recovery

By Christina Miller
Lawyer, SSEEO secretary and board member, and proud daughter of a stroke survivor

In July of 2009, I received a call that forever changed my life. My father, who had gone into the hospital that morning for a routine cardiac catheterization, suffered two strokes as he was waking up from general anesthetic. He was virtually non-responsive and was being kept in the intensive care unit of the hospital. My husband and I immediately jumped in the car and spent the majority of the five hour drive from Chicago to St. Louis in a mixture of tears and shock. Never having encountered stroke, I had no idea what to expect when I finally saw my dad.

He was heavily sedated but awake when I arrived. I was relieved to see that my dad looked the same and seemed to recognize me, but my relief quickly faded when he spoke. His speech was heavily slurred and, more importantly, he was speaking incoherently, making no sense at all. My dad, a stickler for proper grammar and enunciation, is one of the smartest men that I know. One of our favorite pastimes was debating anything and everything from politics to religion to what to have for dinner. It suddenly dawned on me that the dad that I knew and loved so dearly could be gone forever. I excused myself from the room and broke down in tears, desperately wanting my father back.

Just when I thought there was no hope, I caught a glimpse of the dad that I knew. As many stroke survivors may recall, doctors and nurses frequently ask a series of questions to stroke patients in the days following their stroke to gauge awareness and comprehension. Approximately once per hour, a nurse would ask my dad time date, the time, the month, the season, etc. He usually answered the questions incorrectly, and it hurt me to see the embarrassment and frustration in my dad’s eyes when he was unable recall these simple facts. But, on the second day, he quietly asked me to quiz him on the questions that the nurses had been asking so that he could show them that he was all healed and be released from the hospital. My dad was back! In this seemingly silly request, I saw his fighting spirit, his persistence and his desire to learn – even if it was things he had learned before. For me, this was a ray of light in the darkest of hours. I quizzed him constantly until he was able to recall these facts on his own.

Thankfully, my dad made miraculous strides over the next few weeks and, after approximately six months, was nearly fully recovered. His long and often difficult journey of recovery was not without bumps in the road, however. Here are a few things that I learned as a caregiver to a stroke survivor.

Laugh. While my dad was in the ICU, he often had erratic emotions that would rise up and go away very quickly. Once, when my mom and I were trying to help the nurse give him his medicine, he became irritated and told all of us that we were “fired, fired, FIRED!” We giggled to ourselves at his feistiness. The situation was very serious and very sad, but we were able to enjoy a little humor a time when there was little to smile about, and that helped us to carry on.

Accept help when it is offered. My mom and I were bound and determined to do everything for my dad as he went through therapy and recovered. However, even with two of us committed to caring for him, we found that we were stretched very thin between our jobs, family and community responsibilities, particularly with me trying to split my time between my home in Chicago and my parent’s home in St. Louis. After about a month, we were both completely worn out, and other aspects of our lives were obviously suffering as a result. It was uncomfortable at first, but occasionally letting our friends and family take dad to therapy, cook his meals, visit with him, etc. gave us the time we needed to get our own lives in order. We were more dedicated and patient in the time that we did spend with him, and I think we were better caregivers as a result.

Be sensitive to the psychological aspects of recovery. One thing that surprised me about my dad’s healing process was the significant psychological toll that having a stroke took on him. A proud Sicilian man, he was embarrassed, frustrated and impatient with his new physical and cognitive limitations. He had bouts of depression over losing some of his hearing and eyesight, his physical mobility and his ability to communicate as well as he did before. While these skills have mostly returned, he is acutely aware of his new limitations (even if very slight), and helping him see his amazing progress instead of focusing on what he can’t do is an ongoing effort.

Remember that recovery is a process. Throughout my dad’s journey, there were days where I felt like his recovery was going very well and others where I thought he was actually regressing. Remaining patient and positive at times when he wasn’t showing the improvement that I hoped was important for both of us. Nearly two years later my dad is still in therapy but, when I think about those first few days after his stroke, I’m incredibly grateful for and proud of the progress that he has made.