The Ryders- Our Journey from the Caretakers’ View

My name is Ginnie Ryder. I am a wife, mom to 4 grown children, and “Mema” to 12 grandkids. I was a stay at home mom for 16 years while my kids were young. I volunteered for many things at our elementary school, and was then hired as a teaching assistant. I loved my job for 32 years, and am now retired. I enjoy spending time with family, relaxing at our cabin, doing home improvement projects, watching grandkids, reading and taking walks.  

My husband, Mark, was in a car accident 20 years ago, and sustained a brain injury. Like most people, I didn’t know much about brain injuries, but started learning about them then. It was a “learn as you go experience”. Brain injuries change over time, and as a caregiver I needed to keep up with the changes. It seemed that as soon as I thought I knew what to do to help, something would change, and it was like starting over. I have to admit that at first, I was in denial about how life changing this would be. A doctor told us that most healing in the brain takes place within the first year. I chose to believe that meant Mark would be back to normal in a year. As I learned, the “normal” from before the accident would never be the same.  

Mark’s injury affected the executive function of his brain. His job as an environmental engineer required a fully functioning brain. He also had headaches every day, so was not able to return to work. After holding his job for 6 months, I received a phone call from his employer saying they were cleaning out his office, and would send his personal stuff. This was a big hurdle for both of us to get over, but I was still hopeful that in another 6 months he would be healed and be able to work.   

I continued to work, and Mark started “Grandpa’s School”. We had a 2 year old grandson, and Mark took care of him while our daughter worked. It helped him to feel useful, and was good for both him and our grandson. He never got frustrated or angry when he was with our grandson. We never dreamed that “Grandpa’s School” would continue for another 16 years, and include 5 more grandchildren! He healed a lot in that first year, but not enough to go back to work. He was put on disability and continued to stay home. 

The most challenging part of being a caretaker for Mark was watching him struggle with things that used to be easy for him. He had trouble finding words, balancing his checkbook, understanding directions, and doing simple projects. He would get angry and frustrated. My job was to remain calm, and remind him that his brain was injured, and that I could help him. He didn’t always want my help, and was mad that he needed it. I learned to encourage him to rest, eat a snack, and try again later. This usually helped.  

Another difficult challenge was watching my funny, outgoing husband retreat from family gatherings like reunions and weddings. It was just too hard for him to be around a large group with so many conversations going at once, causing noise that he just couldn’t handle. He would find a quiet corner and watch from a distance. He never lasted long at these functions.  

When I meet caretakers who are new to this job, I tell them to stay strong – it will get better! Try to focus on helping their loved one through their frustrations, and encourage them to focus on what they CAN do, not what they CAN’T do. It is a learning experience for both of you, so do what you think is best. If that doesn’t work, try something else, and don’t be afraid to ask for help. Brain Injury groups are great for the person with the brain injury, but are also helpful to the caretakers. It helps to bounce ideas off other caretakers who have been where you are. 

It was true that most of Mark’s healing took place the first year. His sense of humor returned, he was able to figure out coping strategies so he didn’t get so frustrated, he was more comfortable in crowds, and learned that asking for help isn’t so bad. There are setbacks, but fewer and farther between. He gets satisfaction out of helping “newbies” in the brain injury group.  

When I look at how many obstacles he has overcome in the last 20 years, I am grateful and awed. He never gives up, no matter how hard something is. He is a husband, dad, and grandpa who is willing to help with whatever we need. He is an inspiration to all of us. 

I no longer consider myself a caretaker, but a companion. Mark and I enjoy being able to take each day as it comes, and go wherever life takes us. As we grow older we appreciate the small things, and don’t worry about what we don’t have or can’t do. We look forward to whatever changes life has in store for us. 

Ginnie Ryder