parenting – TBI Spouse (and Others)

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.

I have been asked before how our daughter, Eva, who is almost 5 years old, handles all of her dad’s TBI related issues. The short answer is that she handles it fine because to her, this is normal. She does not yet know that not all families have injuries to deal with. I do not even really know what life would be like without an injured husband who is parenting with me.

Even though Eva doesn’t realize anything is different about her home life compared to others, John and I do. We work hard to make conscious decisions about her upbringing.

Last weekend, John took Eva to the beach (giving me a few hours of much needed alone time). They’d been there for awhile when a family arrived and setup their stuff directly in front of Eva and John. It was so bad that Eva could no longer swim there because of their oversized float. It was quite rude of them. (See image) Eva turned to John and said, “Dad, are you getting angry? Are you mad?” John replied that he was a bit annoyed but that she could still swim. She said, “No, I don’t like those people and I’m hungry. I’ve been swimming enough.” That ended that. They had been swimming for a couple of hours by that point so she was likely ready to eat and leave. I think the interchange was interesting though – that she was astute enough to pick up on the subtleties of the situation. She may be picking up some of my behaviors when I step in to deescalate a situation before it even begins to escalate for John.

Oversized float directly in front of John and Eva’s slice of beach.

We regularly talk with Eva about her behavior in relation to John. That when she needs to be quiet around the house or even at times when John snaps and may deal with a situation a little on the harsh side, that it isn’t Eva’s fault. That she hasn’t done anything wrong. (This is only in those cases when she hasn’t in fact done something wrong. She is punished if she oversteps her boundaries.) That daddy has a brain injury so sometimes needs to rest or needs quiet. An example is when we are out at a restaurant, like Chick-fil-A, and the noise or lights get to be too much for John and we have to leave sooner than we’d like. At a place like that Eva is typically playing in the playground area so it is a major let down for her if we have to leave sooner than expected. She knows not to throw a fit but will pout. Once we are in the car, we will explain it to her. It’s still a bummer for her but she understands that it’s what we have to do for dad and it isn’t her fault.

She is a very caring little girl and often wants to contribute and help. I wonder if maybe she will go into healthcare or some other field where she can care for others. Time will tell. Right now she says she wants to be either a doctor or a “firefighter doctor” when she grows up. She may be so tired of living with someone who is injured that she may decide a career like that will be too close to home.

Our end goal with her is to raise a happy and healthy person who thinks before acting. We are doing our best to try to ensure she doesn’t form any enabling characteristics or have a stigma to overcome personally. We are honest and open with her.

Some good things are that we do a lot of family things together. She is included in the team and has a say in many things. Because John is retired and I work M-F, 8-5, him and her get daddy/daughter time every morning. They snuggle together as Eva is waking up, they have breakfast together, John plays good music for Eva and they sing together, etc. For instance, Eva now sings lyrics from The Animals, “House of the Rising Sun.” This one-on-one time with her dad is unique and something she would miss out on if he were working like me.

The routine John has to follow requires all of us to follow. This is annoying but also a good thing. It forces all of us to take time to rest and slow down each day. The routine and structure is excellent for Eva.

I would love to hear from you. Please comment or leave a question.

Tag: parenting

Work/Life Balance; Will it Work?

Raising Eva