What do you think the hardest part of Robert’s recovery has been? Is it the physical part, the emotional part, or motivational?
I find it difficult to choose one subject over another as they are intertwined and play off each other. Robert was a young, active individual working full time, playing as much golf as he could, and socializing with friends and family. His stroke left him unable to walk, move his right arm and leg or speak. In the nearly 2 years since his stroke, he has made tremendous progress.
Robert wants to be busy all the time, and the busier he is, the better his emotional well-being. Following his discharge from a sub-acute rehab facility, he continued with out-patient physical, occupational and speech therapy. We are very blessed to have a rehabilitation hospital so close to our home. As a result, I can get him to therapy sessions and continue to work full time. Due to the severity of his stroke, Robert can no longer work. Besides traditional PT, Robert also participated in several robotics clinics for his arm and foot.
He now attends the Speech, Hearing and Language clinic at a local college on a semester basis. This speech therapy includes giving him ways to manage the frustration of his speech impairments and gives him strategies to improve his word retrieval. It also has the benefit of providing another outlet of socialization and helps to improve his interpersonal communication and build his confidence. But, as with many people, our health insurance pays for only so many therapy sessions, so I try to be as creative as possible in finding other outlets for him. At home, he played the Wii to improve movement in his right arm. He now goes to the gym at least three times per week with a wonderful friend who picks him up, works out with him and brings him home. In fact his speech therapist said she saw an improvement in him after he had begun exercising.
So although our world is much smaller than before his stroke, we try to do things outside our home to keep boredom and sadness away. Our son has taken him to ball games and concerts, the movies, even a trip to Cooperstown, to the Baseball Hall of Fame. Our son will come and stay so I can have a break and re-charge – which I encourage every caregiver to do if they are able. Accept help when offered and ask for help when you need it.
What’s the hardest thing that the two of you have had to manage in the past 2 years?
I wish I could understand what he is really thinking and feeling and he wishes his independence wasn’t taken away. We both have had to learn to be VERY patient.
How has your daily life changed since Robert’s stroke since you are the primary caregiver?
To be honest, I feel tired a great deal of the time. I go to sleep earlier and don’t much care if I’m behind in the paperwork or laundry. Everything pretty much revolves around Robert and his needs for the day. When not at therapy or the gym he now manages very well on his own at home. Because my office is close to our home, I can easily go home to fix his lunch and check that he’s OK. I am fortunate to have a boss who is very understanding and allows me to have a flexible schedule. But I still worry a lot that he is safe. I go by the “one day at a time” rule and pretty much live in the short-term with the exception of managing schedules (doctors, therapy, etc.). Thinking of different, nutritious meals and preparing them is a challenge – no more pizzas for a quick dinner fix. We don’t socialize as much anymore, but occasionally go to a party or a wedding.
Have you had to use incentives and motivation for Robert to keep him motivated and working on his recovery?
Robert is highly motivated when attending therapy – he would go all day, every day if it were possible. He has worked very hard to come back. However, it is difficult to motivate him at home to do the exercises that his therapists have given him. One of his doctors early on in the recovery process gave him the example of “…it takes 10,000 hours to master something…” no matter what the goal. I’m fairly certain Robert is sick of hearing me say “10,000 hours” but we keep at it. I also use the example of when our son was a child and didn’t want to do his homework – “what would you have said or done?” I think we are both determined to succeed but without our faith, our family, and our friends, this journey would have been overwhelming.
Has the stroke affected your relationship with your husband?
Yes it has. I have made a joke since early on in his recovery that if he thought I talked a lot before, it must be driving him crazy that I often have to speak for him now….and he agrees. Because he is no longer able to go to work, take care of the yard, shovel the snow, etc. it makes him feel bad. Clearly sadness can overtake and paralyze you pretty quickly, but we try to manage his disappointments with the praise and “atta boys” he deserves for his perseverance in recovering from his stroke.
Are you worried about his trip to North Carolina without you? What worries you the most?
I was worried as the trip approached but I feel pretty confident his friends will watch over him. I was concerned that they would do the “man thing” and not stop on the long drive so he could walk around, but I was assured that since they were all getting older, nature kept them from taking long drives without stopping. I sent the meds with directions and keep praying. I worry the most that he might not be feeling well, but won’t tell someone.
A special thanks to Robert and Janice* for talking to us about their experience. Please feel free to leave comments or questions, and we will be happy to try to answer them. Learn more about Burke's New York stroke rehab program.
*Name has been changed to maintain confidentiality
-- Amanda Censoprano, DPT