Dear Fellow Caregivers,
My husband is a Navy Veteran. We have been married for over three decades and are still sweethearts. What a blessing. There has never been any doubt that we would care for each other as we grew old together. We both know that’s the way true love works.
It just never occurred to us that the role of caregiver for the other spouse would come to either of us before retirement was even remotely in view.
My sweetheart sustained a serious back injury during active duty. That injury and the subsequent treatments for it left him with a rare and horrifically painful spinal cord condition. From the first day of the acute onset of his symptoms and intractable pain, we were suddenly thrust into the fight of our lives: Him to withstand the relentless pain, constant falls and devastating changes to every part of his body, and me to find the way to help him, no matter how far we had to go to get it. I became, and will always be, a woman on a mission.
It took seven months and an absolutely miraculous blessing to come in contact with the doctor who finally diagnosed him. I always thought I couldn’t wait for a diagnosis because getting it would reveal how to “fix” him. Although we are eternally grateful to that doctor for her diagnosis and her brilliant efforts to help him, we have learned there is no “fix” for my husband’s condition.
There is also limited help for his constant, intractable pain. His condition is progressive, it has no known cure and very, very few doctors even know anything about it. Thankfully, his condition will not take his life, but many patients with his same condition take their own lives because they can no longer stand the pain.
Additionally, my husband has PTSD. He, and to be quite honest, our entire family suffered with his undiagnosed PTSD for over 20 years. Thankfully, he made the brave decision to “do the work” and, with the help of kind doctors and good medicine, got the tools he needed to start successfully managing his PTSD before he was hit with the incurable diagnosis.
His previous therapy, his faith, medication and some really great doctors and counselors are working together to help him hang on and deal with the devastation this condition has unloaded on every aspect of his life and ours. They were even able to get us couples counseling to help us deal with what his condition and its shock waves have done to both of us and our relationship. Even in the darkest times, there are more blessings to be found.
I joined the Caregiver Support Program (CSP) because it finally dawned on me that I might need some help, too. I also thought I might learn some ways to help my husband and get some tips on how to wade through the VA health care system. I was right. I have gotten all that and more. Priceless information and tips. Good training and comforting camaraderie. I now have people that “get” what I am going through.
I realized I had been so consumed with trying to find help for him and navigate VA (which I knew almost nothing about at first) that I was losing track of me. Other caregivers, Tammy Warren (our local Caregiver Support coordinator), and all the kind folks I have met through CSP have made me realize that I am not alone in my struggles.
I have people who understand the fight I am in to get my Veteran the care he desperately needs and deserves. As I am putting these words together, I am actually in the middle of a battle for his care.
They also gave me the tools to see that I was slipping into depression myself, which led me to do some self-care to try to correct my course. CSP has been another blessing.
Let me whole heartedly encourage you to give CSP a try. I know you don’t think you can squeeze the time out of your already overloaded schedule, but you will be glad you did.
I am hoping you find some little blessing today.
My Sweetheart’s Caregiver