John is medically retired due to his TBI and disabilities. He has not held a job for about 14 years. We decided to have a child well after he was retired. We knew when we were making that decision that he likely would struggle with the taxing nature and amount of time and patience it takes to raise a child. We knew we would face some unique challenges with him as a dad having a TBI but were not fully aware of what those might be. When we had Eva, I was working full time; a typical 8-5, M-F job so we had to have childcare help. Because of John’s disabilities, he was unable to take on the responsibility of being a full-time dad to take care of Eva at home all day long while I was at work. Even though stay-at-home parenting is not a paid job; it most certainly is a job and a very time-heavy and demanding job at that. John cannot multi-task; he needs mental breaks every couple of hours, if not more; he cannot make quick mental shifts between topics; be interrupted; handle loud or repetitive noises; and so on.
Now that I am finished with school (thank heaven), I am working full-time outside the home again. Now, Eva is in elementary school and not in daycare. She is older and therefore more self-sufficient but still quite demanding. She is a lot like the character Stewie in the Family Guy when he approaches his mom and says in rapid repeat, “Mom, mom, mom, mom, mommy, mum, mama, ma, ma, mom, ma, mommy!!!” and his mom, Lois finally says, “What!?” and he responds, “Nothing…ha-ha-ha” and runs away. (<a href="http://<iframe width="560" height="315" src="https://www.youtube.com/embed/aOLxQGLJouI?si=pEkzbS86A7yxhbGL" title="YouTube video player" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen>Check it out.)
My work schedule now has been wonderful for work/life balance. I am lucky enough to have a boss who listened to my needs for my family life paired with my desire to have a successful career and worked with me to find a schedule that would benefit her and me. I work 6 days on (12 hr shifts); 8 days off. It causes a whiplash effect that we are still getting used to. I am not complaining. It is simply that when I return to work for what I call my “on cycle,” it feels like I am returning to work after a vacation. My first day back is always as if I am shaking the dust off. I am a little off my game. By day 3, I am beginning to get tired but really getting into the flow. By day 5, I am rockin’ and rollin.’ Day 6, I am ready for a break but also feel like I could go longer because I am so into the groove.
This is great for me when I am wearing my work hat. With my mom, wife, daughter, and friend hats though; it can be trying while I am on my on-cycle. I have found that when I am working little else gets accomplished because I am in full on work mode. The house gets progressively more and more messy as each day passes. I struggle keeping up with text messages from friends and family. Eva gets behind on reading and homework. John gets consecutively more tired as each day moves along. By day 3, he is into a fuzzy brain day. He can sometimes maintain a fuzzy brain day until day 6 but it is a very slippery slope. Very little at those times can push him into a bad brain day.
Knowing that I have a huge reward of 8 days in a row off is the gargantuan carrot on the stick. When it is my “off-cycle,” I can generally be 100% mentally off. During the off-weeks, I can fully be everything else. Work then takes a back burner, and my family and personal life are filled.
I sometimes ask John if my full-time work as a nurse will be something that he can sustain. I worry that he may not be able to. I wonder if I will have to make further sacrifices. When I really have moments of darkness and I am more emotional, I think inside my head stuff like, “Will I have to go part-time? What will that mean for benefits? Will my current employer continue to work with my needs? What can I do different to make this work?” That little voice in my head, which can be so loud at times, even tells me things like, “Maybe you should just get a little job somewhere with low hours.” Of course, this is not what I want and when I have times like that I often fight back with, “No, that is not acceptable. I don’t want to have to give any more; sacrifice anymore, etc.” It ends with, “It will work out. We will make it work and figure out a way.”
John agrees with me most of the times that he does not want to ask me to sacrifice anymore. He will also say things to me like, “I don’t know if I can do this shift anymore.” I really just keep hoping that he will be able to find the way to manage this because we have also realized that any schedule I might have will be a struggle in its own way. I would not say that we are at an impasse but it is a time of contemplation…a sort of time will tell.
We always find a way to make things work. I am so, so, so happy with my job now though. If I have to give on this because of a lack of energy from him; I think it will be very sad. I just hope that it doesn’t come to that. This has brought up other and new worries from me about him getting older and changes that may occur with his health and TBI with age. What sort of sacrifices will I be asked to make that I am not even expecting? But, I suppose a lot of that is starting to play the “what if” game and that could drive a person crazy.
TBI Spouse (and Others) 