I thought my darkest days ended when my husband came out of his coma. I was wrong. God has had us on this journey for a reason although I am not quite sure why, other than His Name be glorified. When our life suddenly changed in November of 2019, I expected it to eventually get back to 'normal'. It hasn't and it never will. Our lives keep changing every few months. Sometimes weekly it seems, just when I get used to things being one way, something else changes with him or something in our lives and it turns us topsy- turvy again.
The first few weeks and months after his stroke and coma, he was having to relearn things. His speech was affected not only by how he pronounced things, but his descriptions of things, his command of the language itself was teetered on the edge of almost non existent. He switched words around and got frustrated when I couldn't understand him and he couldn't understand me. He couldn't tell you what the name of a clock was, could mainly say numbers and would answer questions counting. It made me incredibly sad that I no longer had conversations with him.
Imagine, if you will, one day you sit and unwind with your spouse. You talk and have a great time together like you always do. You discuss work and people, what's happening in the lives of the kids, what sermon you listened to on the radio or what you learned that day reading your bible. You eat dinner together, you watch a movie, you go to bed. The next morning you get up, have coffee together and make a plan because you have to work, but they are coming to help with something later on, but they have a Dr. appt first. So your daughter drives your spouse to the Dr. appt, for you to pick up later. Nothing at all in the morning to indicate that your life was about to be altered in a way that you never could have imagined. A few hours later you are rushing this spouse that you have loved for over 20 years to a clinic for immediate help because something is terribly wrong with them and you don't know what it is. The terror of the next few weeks is a constant companion to your anxiety and your PTSD.
But it just continues, because the brain injury caused epilepsy... the seizures of the bad variety...
It doesn't go away. Day after day you succumb to fear and anxiety, you are on constant high alert for anything that is off about your spouse. You can't let your guard down-ever.
I've never been a lonely person. I've always had friends and family that surrounded me, even when I didn't want them to. I've always had a friend or family member that was either going through the same thing or had already been through the same thing...
Not this time.
I have been alone in this battle. I have struggled with the chatter of a husband that can't make himself understood at times. His speech doesn't JUST affect him, it affects me. I bear the brunt of mental anguish of always trying to figure out what he is trying to say, or describe. Imagine if you can your husband being almost childlike, but still having to treat him with the dignity and respect that he deserves because he is your spouse and you love him. Imagine when before his stroke you discussed decisions, talked them through and then he being the head of the household made the final decision and put it into action. Now it was all totally on me. It has been decision after decision and then having to put everything into action and if I make a mistake its a big one. No one can truly understand until you are walking the same path. You appreciate the friends that are close to you, so its not like you don't have a support system, but what I am talking about is completely different. Like it helps a new mom discuss things with someone that has already had a child(ren). If someone has been betrayed by a friend, it helps to talk to someone who has also been through the betrayal of a friend.
It is hard to describe the intense loneliness that comes along with this type of situation. You tend to isolate yourself with your spouse because he might have a seizure and it would cause mental trauma to other people, especially children if they saw what happens to him. Its not like on the movies. Its ugly and its scary. Then you add in the thoughts, is this the one that has the potential to kill him? Is this the one that lasts and lasts and seems never ending? What if he has one at church or the grocery store and hits his head and dies? When we are isolated, I feel safer, because I feel like he is safer. The constant worry and fear etches itself all over your mind and infiltrates the body. You feel exhausted all the time. You feel frustrated a lot more than you show. You have all these feelings and then you have guilt on top of it all. Was there anything I could have done to keep him from having a seizure? Should I change his diet? Should I bully him into more naps? Was this seizure caused by tiredness, too much salt, too much stimulation, over and over again it runs through your head until you just want to scream, but you don't dare because then he would worry more about you. Then when little things happen you have to run to google to see if its associated with a seizure and if you're not sure you have to put in a call or message to his neurologist and wait to see what he wants to do, if anything. I spend my days in a state of worry and anxiety.
The stress of having a spouse not mentally able to make decisions is very taxing. My husband was always a good leader of our home. He was the strong impenetrable fortress that blocked bad things from our life. It felt like he was my shield, the one I could count on here on Earth. He looked to God for everything he did in life, worked tirelessly to provide for his family and loved me to distraction. While some of that is altered these days the Truth of God still prevails. We are able to have conversations now, the last 6 months he has greatly improved in that area, but his memory is slipping more and more. He told me that he wonders sometimes if he has dementia. I was told by his neurologist that eventually he will more than likely develop it with his brain damage. So now I have something else to worry about. Just sitting down and typing these things out, makes me feel like a terrible person because I feel like I have a Gripe-Fest going on, but truly its not even that, its just this loneliness for people to be able to see and understand a little bit of what it means to be a sole caregiver to a spouse that isn't old, looks normal to the outside world, keeps quiet because he doesn't want to talk to others because of how they may perceive him, looks to me and defers to me because I protect him and take care of him and all of his needs. I am the one that has had to ride all the emotional highs and lows. I am the one that watched him die and be revived. I am the one that watched his body wither and drop 40 pounds in 6 days. I am the one that has had to do all the tasks we used to share together. I am the one that watches him have seizure after seizure. I am the one that has to figure out that some of the things that he goes through are actually seizure activity.
If you are going through the same with your spouse...I know what you are going through, you are not alone.
You are not alone.
To God be the Glory! Forever and ever AMEN!
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