by Kathy Rogers
Stroke. What image comes to mind when you read that word? An old person? A person with sudden numbness or weakness of face, arm or leg, especially on one side of the body, sudden confusion or trouble speaking or understanding, sudden trouble seeing in one or both eyes, sudden trouble walking, dizziness, loss of balance or coordination, sudden severe headache with no known cause. All these are symptoms of stroke. When my husband had his first stroke Oct. 26, 2009, he experienced every one of these symptoms — but he was only 51. He had mentioned he had a headache, but we didn’t think anything much about it. He didn’t say it was severe. He went from standing in the kitchen talking to me to flat on the floor in a split second.
Because Lee received quick and excellent care from the staff at Memorial Hospital at Gulfport, Dr. Abha Mishra, and an abundance of prayers on our behalf, his recovery story is a miraculous one. The story I want to convey to you today is one that is less often discussed but can be just as traumatic, though in a much different way. My story is about the effect on the caregiver and in my case, also the wife, friend and business partner.
A caregiver often has to deal with fear, uncertainty, helplessness, physical limitations, financial considerations, job loss, housing, sexual intimacy loss, anger, questioning God, children, the list goes on and on.
After the stroke, my husband could not communicate and could no longer command his body to do simple tasks like button his shirt and comb his hair, much less use a computer, run a business or help parent a teenage daughter. Some people may say it was like he became an infant. It was worse. I was used to depending on him; I didn’t marry him to have to be in charge of everything. He was angry and frustrated with himself, yet at the same time frightened inside. He was determined and had demonstrated he would work hard to recover, but he still struggled with his own questions. Why me? Would I abandon him? Would I still love him? Would I take care of him? He did not realize or understand, but I became his focal point for the anger, frustration and fear.
Dr. Mishra and her team had warned me that I should expect emotional and behavioral changes in Lee, but I initially dismissed those warnings. Because his recovery was so miraculous, he spent a total of 10 days combined in the hospital and rehab. Before those 10 days were over, I was exhausted. Exhausted from being at the hospital day and night. Exhausted from all my personal concerns about his recovery and what it meant for our life together, our business, our family and my workload. I was fortunate, our friends, family and employees stood by us and helped us.
Both he and I had to come to understand that a stroke is a traumatic brain injury and just like any other traumatic injury to our body it takes time to heal. He slept a lot. I learned to encourage instead of resent the fact that he needed a lot of sleep, to understand that his brain needed that down time to help with its healing. Still today he often takes a nap during the day. They are good for him and therefore good for me.
Communication is a big issue. Quick back and forth conversations are gone. Verbal multiple choice, I call them, or questions, are a thing of the past. Lee’s main residual effect from the stroke is aphasia. Aphasia is a loss of ability to understand or express speech caused by brain damage. Lee does not have any trouble understanding but he does have trouble expressing his thoughts. He has all the words in his brain, he knows what he wants to say, but he just can’t seem to get them out or get them out in the order he wants.
As his caregiver and wife I am very protective of him. I want to be sure people understand his intelligence is not diminished.
Maintaining family structure is another important issue. When I suddenly had to make all the decisions, I wanted to be sure I did not diminish his role and responsibility as my husband. When situations arose I made sure I discussed the situation with him, told him how I thought we should proceed and then asked for his agreement. This helped him to know that I still valued him but also helped alleviate some of my concerns about the direction I was taking our family or our business in.
If God had a sign-up list and said who wants to volunteer for a stroke, we would never have willingly put our names on the sign-up sheet. However, looking back, as crazy as it sounds we are thankful for his strokes. It has shaped us in ways nothing else could have. It has helped us become more thankful and kinder people. It has allowed us to meet and encourage people we never would have had the chance to otherwise. It has made our marriage even stronger. It has been a blessing.
KATHY’S ADVICE
Don’t be a martyr.
Take time for yourself without guilt. Caring for a stroke victim brings both physical and mental exhaustion. If you don’t care for yourself you can’t give care. Ask for help and allow others to help you. Find out what resources are available to you and use them. Join a local stroke recovery group and attend their meetings — I do. You will meet other caregivers there that will encourage you as you encourage them.
Educate yourself on strokes.
When issues arise it will help you to know that these are not unusual occurrences.
Choose what you think about.
Choose to be thankful in spite of circumstances. Find at least one thing to be thankful for and choose to focus on that thing. What your mind focuses on makes a huge difference in your attitude, and ultimately how you handle the situations you will encounter.
Understand that a stroke is a brain injury.
Their brain needs time to heal. They need lots of sleep. Encourage them to rest and get some rest yourself. Understand that your stroke victim is most likely just as smart and mentally capable as they always were; they are simply unable to communicate as well. Believe in them and encourage them.
Anger can be a real problem.
I believe it builds off of frustration; frustration for them and frustration often combined with exhaustion for you. Acknowledge you need help; it is a sign of strength, not weakness. Ask for help, do whatever it takes to get help.
Don’t expect a quick fix with a stroke.
It has been almost eight years since Lee’s first stroke. The second was minor compared to the first, but we are thankful for it because it helped us to identify the cause of both strokes, which was a hole in his heart, and he was able to undergo a procedure to repair the hole and has had no more issues. The healing and recovery process is just that, a process. Give it time, recognize and celebrate each victory.