No one expects to be told that his or her spouse will be disabled for life. Having a neurologist tell me that about my husband was a shock. Do we learn by doing, or learn by experiencing? I questioned in my mind, how could you just assume that two days after a massive stroke that a man as young as my husband could would not recover? I thought the neurologist was crazy. I chose to do everything I could to prove her wrong.
Our daughter and I were at the hospital every day. The valet knew us, security knew us, the nursing staff knew us, and the patients knew us. I learned how to assist my husband by watching the nurses and the physical therapists. In my wildest dreams, I never would have thought that I would be putting adult diapers on a grown man. Most times when the nurses came in, he was cleaned up. When we started taking him to the restroom, I also learned how to assist this 6’2 195 lb. man to get up into a wheelchair, to a toilet. Looking back, I am amazed at how I just did things without thinking. My goal was to help him fully recover. That was my focus, and I prayed consistently for his complete restoration. Our daughter and I worked diligently to help bring him back. We entertained him and we helped feed him. We even bought first grade writing books, to teach him how to write with his left hand. (His right side affected from the stroke).
Even after he was released from the hospital, he had to go to an in-patient rehab facility. There too, we did everything we possibly could for his recovery. We would bring the pets to visit (that was allowed), I cooked often for him (and the nursing staff – LOL). I helped him with his medications and our daughter and I would roll him out to the park across the street from the facility just so he could get out, get fresh air and sunshine. All of this was part of his recovery.
When he was released from the rehab facility, I still had a physical therapist come to the house. He got a work out from them, followed by another from me. Although my husband initially came home in a wheelchair he quickly advanced to a four pronged cane, to a two-pronged cane, to a single cane and finally to nothing at all! He proved that the neurologist statement was wrong. Sure, he had a new swagger to his walk, but he accomplished more than most “expected”.
Recovery for anyone is not easy. I was blessed to be able to step away from work for a few months. My availability to be with him almost all day, every day made a big difference. As a man, it was obvious that he struggled with the fact that I had to help him with so much, but that is what encouraged him to do better. Recovery is a process. Step by step process.
My husband’s doctors and physical therapists often would state that they were impressed that his depression was minimal, frustration non-existent. I was not surprised. I never would allow my husband to feel sad about what had happened. I kept everything pleasant, we played music that he loved, brought DVD’s in for him to watch, and never made him eat the hospital food/rehab food on a regular! In my mind in order from him to fully recover, I needed to keep normalcy in his life in the midst of all the pain. Sure, there have been challenges in the recovery process. He has aphasia so his memory is difficult at times, even to this day. When I initially returned to work after being off for a few months after his stroke, I had everything set for him, and PT was still coming in twice a week. One day he decided he wanted hot dogs for lunch, and he forgot they were cooking. They burned miserably, but the joke was, at least the house was still standing! Again, we learned by what we were doing and experiencing. We adjusted what he could and could not do when I was not at home. Never did I make him feel bad for anything that went wrong.
In my mind, his recovery is a never-ending process. We are thankfully a far cry from him burning hotdogs but we have good and bad days. I see glimpses of my old husband sometimes when I ask him to put something together. It may take him a while to get it done, but he gets it done. After all these years, I have accepted the fact that this just is what it is. God dealt me this hand of cards and now is waiting to see how I continue to play them.
When all this initially happened, I rarely cried – there was no time for it. I discovered a brand new me that I really did not know existed. A stronger, more independent woman who continued to smile, continued to love but one who was torn up emotionally inside. For many years, my focus was strictly on my husband’s recovery and keeping our daughters life as normal as possible too. I unknowingly began to neglect my needs and me. As a woman, when you discover that you have that S on your chest, you have a lot of pride. You learn how to keep the facade so people cannot really see what is going on inside. You even fool yourself.
We are all wired differently but I am a woman who is nurturing and caring. Especially to those that I sincerely love. Even through the normal struggles of marriage, my husband was always my best friend. After he had the stroke, I felt I lost that, because the person I was nurturing, the person I was caring for, the person I so desperately wanted to recover was not there. It took a while for me to acknowledge this fact: I went from being a wife and a mother, to just a mother. A single mother with two kids, but wait…one of them is my husband. Twisted statement isn’t it. As twisted as it is, it is unfortunately true. I fought for his recovery and we managed to get more of him back than most expected. I discovered that there were times that I felt anger and resentment. I challenged my faith. Yet I put all that aside. Buried it. Discovery brought pain and confusion that I refused to face. Looking in the mirror, I did not know the woman I saw. Although there was still a prominent S on my chest, it was broken and the cape I wore was worn and extremely tattered. In February 2012, the cape was sent to the cleaners, the S was out for repair. All that I had ignored going on with me, took a toll on me. Then my long recovery led to my new discovery.
When we are determined to help others, we cannot neglect ourselves. Ignoring the additional weight on my body, the aches and pains, I continued to press on until I could not anymore. The pains were unbearable. Tumors had grown on my right kidney so large that they were pressing other organs. All that strength I felt I had was deflated temporarily. My kidney was removed. That very same day, I fought to get up and the nurse stopped me. I was in so much pain, but in my mind, I still had to keep going, who was going to care for my family if I did not?
My family, my doctors saw me cry, something I had minimally done for so many years. It was then I decided to make changes. As I recovered, I realized that although it is my responsibility to care for my husband and our daughter, it is also my responsibility to care for myself.
As a caregiver, a well spouse we too often are caught up in everything except our own health and wellbeing. My spouse is disabled. I know that. I accept that fact. He is thankfully here and as I make life accommodating for him, I still must make like accommodating for myself as well.
Support groups and therapists are not for everyone. Faith is not for everyone. Remember, we are all wired differently! I personally got through my recovery by re-discovering my faith. It was always there, but my anger and frustration clouded what I believed. Although I was provided what I needed (regarding my husband’s recovery), it may not have been what I wanted. His complete restoration is what I wanted and I continued to do everything I could to bring that back.
My tumors were not cancerous, my left kidney functions like a champion. The cape is clean and the S is repaired. I discovered that I have other purposes in this life.
My discoveries led me on an amazing journey. I’m still on it. Everything happens for a reason.
…As a well-spouse days and nights can and will collide. Often times we don’t know how we’ll survive. There is hope though. Even as that S on that superman or woman’s chest gets torn, it can be sewn back on again.