A Wife Opens Up About Living With Someone With Post-Concussion Syndrome

{ Editor’s note: My finger lingered for a while before hitting the “post” button on this piece. It did so, because it’s painful. It was written by my Wife, who I love very much. The physical pain of this fight is equally rivaled by the knowledge that your family is hurting along with you, and that you’re responsible for putting yourself and them in this position. It’s not easy to come to terms with that. But, if we’re truly going to be educational about the aftermath of concussion and ignoring your injuries, then this has to be spoken about. – Jay }

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By Jessica

I can’t focus today. I have to grade eight more papers and a week’s worth of discussion posts. Yet, here I sit staring at my macbook hoping that it will just magically happen. I’m sitting in my favorite coffee and tea café listening to the chatter of others and the espresso machine. It’s relaxing. I don’t have to worry about anything (other than the fact I’m not getting any work done).

Every day, I wake up with a knot in my shoulders. I’m stressed out before I even leave my bed. I bring a lot of the stress on. I try to do too much. I try to make others happy while often giving up my own simple pleasures (I really want a f’n latte right now but I’m sipping black tea with no sugar).

My husband has PCS: post-concussion syndrome. He has had 10 concussions (on record, I’m pretty sure it’s many more than that). He struggles every single day just to go to work. Why should I complain about anything? He has to fight constant migraines, memory problems, nausea, dizziness, blurred vision, spots in his vision, over stimulation from simple sounds and environments, and noise sensitivity. Sitting in this café would probably drive him insane. He fights depression that he can’t control. He has never been depressed before. He has mood swings and outbursts of anger that are so out of character and at times unsettling. He puts on a brave face and fights though every single day.

So, who am I to complain? What kind of an ass am I for feeling overworked, tired, and resentful? What a selfish person, right? I can’t lie- I struggle with those emotions every single day. I fight feeling resentful. I feel bombarded the second I get home. The other night I didn’t even get my coat off and the kids were on me. “Mom where is dinner?”, “Mom, I need help with my homework”, “Mom, my brother keeps touching my stuff”, etc, etc. All while my husband is home- laying down. I’ve created this monster. I want to protect my husband and allow him the time to heal from a bad day- every day. My kids have caught on. They too, want to protect him. The problem is that I can’t handle it all on my own. Well, maybe that isn’t true. I don’t want to.

I’ve come to expect and be able to gauge when my husband will have his truly bad days. Those are the days where he locks himself away in our bedroom with the lights off. I’ve become accustomed to it. I come home- ready for the onslaught. I’m sad before I even get out of my car. The man I married, the outgoing, funny, adventure-seeking man is hidden somewhere inside this other man. He is struggling to break free, but just can’t seem to reach the surface. So, I put on a brave face, I smile, and pretend to the outside world that everything is great.

The truth is, everything isn’t great. Being a caretaker for someone with PCS, or any disability (depression, PTSD etc) is difficult. It is draining. And people don’t understand. PCS isn’t something physical that you can see. People doubt it, even some of our close friends. They don’t see my husband on the days he is in our bedroom with the lights off and with a blanket over his head just fighting to stay here on this planet. I can’t lie and say that I don’t think about the majority of the stories you see about people with PCS or CTE. How eventually, it just becomes too much and the person commits suicide. I bury that fear, but it’s real and it is always there.

I grew up afraid to show my emotions. I was taught that you didn’t cry unless you wanted something to cry about. I am working on learning how to express my emotions now. Writing is the easiest way. I see that I am shutting myself down to my husband. It’s not that I don’t love him- it’s that I love him so much that I can’t fall apart. I have to be strong for all of us. He wants to tell me about his doctors appointments, the progress, or at times- the risks. He wants to share his fears with me and I simply nod my head. Why don’t I just reach out and hold him, let him feel how much I care, and tell him how fearful I am? Why can’t I listen and support him the way he deserves? I hate the closed off person I’ve allowed myself to become, but I also know it’s a survival technique.

Can’t I find a better balance?

I struggle with self-hate, doubt, sadness, and depression. I feel lost and alone. How do the loved ones get through this? How do we support and not lose ourselves? Our relationships?

14 thoughts on “A Wife Opens Up About Living With Someone With Post-Concussion Syndrome

  1. Ms Veronica frost

    dear Jessica,my heart go out to you your husband and children having to deal with this very misunderstood condishion ,i has a car accident in 2008 and was told i had PCS and left by the health service to get on with my life .my work did,t understand wath was wrong with me, my GP did,t know or care what was wrong with me and family and friends one by one stopped talking to me and i did,t understand why everyone was turning aginest me untill this year. you see i have short term memory lost and for three and a half years my memory was about an hour so i would repeat myself over and over again and drove my family away. it my family and friends had got together and fourth to get me the medical support i needed and carers in at the begining to give them a brake i would have recovered a lot quicker. the medical profession dose not reckionise PCS as a brain injury because of money ,it was not untill this year that i can make a simple choice like where i want to go because i did,t know what i was suppose to do.i had an OT which came to my home at first and had post it notes put up around the house to remind me what to do and calander and notice bord to tell me what day it is and what is going on every day. then she though me how to walk without looking drunk in the water then to swim. sufferers of PCS also need to know how it effects the people we love, most of us has bad memory so we don,t remember the pain of yesterday but the people around us do and feel it for years to come. i know to date i don,t have any real memory of the past 5 years so i have no pain but every one that knows me rmember and feel the pain.your husband is plessed to have you and his children around him supporting him but fight for help .hugs to you all and make sure you look after yourself and take some time out . best wishes Ronnie

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  2. jason

    Jessica ,
    I can understand all that you are going through. My wife has PCS from at least 5 concussions that that she didnt fully recover from, causing a multitude of other problems .Her speech is affected whenever she gets over stimulated and she cant find her words, thing all seem to jumble together. Her Eyes are badly affected and spotty as she describes it..The ice pick poking at her brain on top of the migraines excruciating pain that even the prescribed ADDICTING drugs they have given her.2 wrongs never seem right? The only help, is her medical card and a pot pill.this isnt her wish to have to do this but its the only thing that helps her. She has a great attitude and is very positive or as positive as she can be in her situation .
    I try to keep her heart and Mind filled with as much love and hope as I can possibly give her . It can be very trying with her “GUT “depression, but we talk and communicate our way through it. I have put my life as a care giver and husband, I do my best to make her happy and provided for.It has to be hard for her so I try to put myself into her shoes and imagine what it must be like.. We should all try to do this with someone less fortunate than our selves.. Its been a tough road but not an impassable one .. When I watch her doing things I know she isnt quite herself , I try to help her but sometime thats too much for her too and she needs to rest and “get her Marbles” back.You see she only has an allotted amount of “Marbles per day” and so when her task id too hard she looses “MARBLES.”she doesnt get them back she just has less to use until she becomes fully recovered sometimes it takes day, but sometimes much or longer.. .I have to be patient and positive ..At times she cannot even pick up her food or a cup .Lately she has had to hold things in a plastic cup because she is dropping everything..
    The only way I could describe the way she feels , is to imagine closing one eye, having rubber bands around your legs and only being able to use your opposite hand and arm for everything..How frustrating would that be..I am here for her and will help her as best I can ,if I could take any of this away I would do it ..Be strong , be Positive but most of all remember patience and Love …

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    1. Sandra Jones

      Wow thank you for your responce. Your wifes symptoms are just like mine. I am so glad/sad :-to see That I am not alone.

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  3. Sean

    Jessica, my name is Sean and I have been dealing with post-concussion disorder since 2010. Thank you so much for sharing your insight, educating us and bearing your very real tribulations. I am married with three young daughters. My wife shares in your struggles; dealing with the daily tasks of running a home, raising our three young daughters, managing our marriage and dealing with the range of emotions, fears and problems coping with my irrational rage, gong-show like attention & working memory deficits, chronic migraine attacks (and common headaches), my mood swings, which are equally as unpredictable & enervating, as well as a host of other discouraging problems we had originally considered transient in nature. We’re still trying to pick up the pieces, but the dishes keep dropping on my head. It makes me sad to think how those I love so dearly have suffered unnecessarily. I struggled for years to get the right help, and the damage done over that period is indeed permanent. I wish I could say that I hope she’ll forgive me for putting us all through this, but like your husband, I am who I am now. All I can do is my very best, when I can. I press on. I need you to know that this article has done more than you could realize, to she’d light on her situation and help me continue empathize as her living husband and partner. I just woke up from my alarm set for 5:24am, to drive my middle daughter an hour away for a hockey game. I’m exhausted and my head was throbbing. I was up all night feeling lost about the state of our marriage and my wife texted me from our bedroom upstairs to me in the guest room downstairs that she’d take her if I needed and wanted her to. I drove my oldest at the same time yesterday, but I’m afraid I’d fall asleep at the wheel on the way home today, so I thanked her up & down. I’m sorry I have to cut this off but my head is pounding and I must rest before other two wake up. You are a bright, courageous wife with an upright heart, and you are not alone. Thank you Jessica, Sean.

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  4. Jennifer Prell

    I share in you pain, fears and bravery. I too try to say nothing and keep things as smooth as possible. It is still the only thing I can even think to do. I love my husband and would never trade him but some days are very difficult and it is true, no one really understand but those who are going through it. You have my sympathy and understanding.

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  5. lifelovelotus

    I am so humbled by the outpouring of support. I truly had no idea what the outcome of writing this piece would be. I wasn’t sure that anyone would even care. Our life isn’t easy, but its our life and I wouldn’t trade it for anything (well maybe health) but honestly we have a deep love and a strong support system. Is there anything more important than that?

    I do strive to find some sort of a balance. I go to therapy every week, talking to someone on the outside helps a lot. It helps me frame my fears and emotions without allowing them to overwhelm me (most days). I also started crossfit about 4 months ago and I love it. Having that hour in the gym with other athletes cheering each other on is an immediate high. I don’t get to the gym as often as I would like but it isn’t for lack of trying or support. Jay encourages me to go even when he isn’t at his best. Sometimes I take him up on the offer other times I let it go for the day. Every day is different. I think that may be the key to getting through some of this. Flexibility. Rolling with things as they come.

    I’m an optimist. I truly feel like Jay will beat this. He will heal and continue to help others heal.

    Thank you all for your kind words and support. It means the world to us. I wish I could say more but I am at a loss for words. I can’t seem to express how this all makes me feel.

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    1. ctattorney

      Thank you Jessica and Jay for your sharing.
      I have a son, now age 29 who suffers from PCS (sports related) and there are many times that I don’t know how to communicate with him because he won’t let me, is in pain, yet also in need of help. Alot was taken away from him when this occurred during his college senior year – many choices about his future. I have trouble communicating with my husband about it and have considerd therapy, but don’t see how it could help. My son lives alone, 3 hours away, and has just left a job that was too much for him. He has no one to talk to, but shuts me out.
      I wonder if you think a social worker would help, as opposed to a psychiatrist or psychologist, since I am not seeking medication; just ways to reach and help him. I know that he would not go to one.
      I have also been in your challenging caretaking role as a young wife and mother of two children during my husband’s early ongoing health issues. I am amazed at how strong you are for all of your loved ones! I wish I had been able to do as good a job, so you should be very proud. I send prayers to you and Jay to stay strong and optimistic. I believe that the brain heals in ways that even science does not understand. There is much that love can conquer if we work together and try our best to communicate.
      Michele

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  6. Annie

    Jessica,
    Thanks so much for posting this. I have PCS and my husband Dave has been so supportive, as you are to your husband. It makes all the difference in the world to me. Just knowing that I am not alone is so important. I too encourage him to do things he likes on his own or with our other friends-exercise, movies, out for beers. Things I can’t do with him anymore. But I know he is covering for me with the three kids, doing most of the cooking, worrying about the bills etc. I’m grateful, humbled and in love. On my really bad days, I remember how much he loves me and it makes all the difference.
    It is really a hard road for the caregivers, and I sometimes worry that I wouldn’t be as steadfast as Dave is.. You are setting such a wonderful example for your kids. It is so hard for the caregiver, I would imagine, because every day is different. At least us PCSers know how we feel, I would think it could be like walking on eggshells for the caregiver. I think you and the other spouses out there are the everyday hereos.
    Annie

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  7. Jessica Duggan

    Jessica,

    Thanks so much for writing this! My partner is still recovering from her sixth (recorded) concussion she got while playing hockey a year ago. I have struggled with many of the same things you have mentioned in this post throughout her recovery. The things that have been most difficult for me have been dealing with anger I have towards the person who hit her, causing the concussion, dealing with the disappointment when we are not able to do things together that I have been looking forward to, watching her struggle on a day to day basis while having to defend her to friends, etc. who ask me questions like, “is she milking it?” when I sometimes just need to vent about how stressful and difficult life can be, and missing the person that I am madly in love all whilst she is right there in the room with me.

    Witnessing the difficulty that Melissa faces each day and living the roller coaster ride that our life has become, it is easy to be dragged down by the disappointments or struggles (especially when you can’t vent to your significant other about how you’re feeling). She has enough to worry about with her own recovery without having to manage my feelings surrounding it, but sometimes all I want is to be able to vent or be upset to her about it. I too go to therapy, which has really helped. We are at a point now where her doctors have said she “might not ever recover.” This is something that I refuse to believe, as i still see improvements from day to day, week to week, month to month, as small or so as they might be, they are there. The plus side of this new diagnosis is that she is now cleared to do things like ride her bike, exercise more strenuously at the gym, etc. as long as the elevated symptoms don’t cause her too much pain. She is still on long term disability with work, unable to work full time, and the symptom that has been most prevalent lately is exhaustion. I know that PCS comes with ups and downs and I try my best to enjoy the ups and remind her that her downs aren’t as bad as they used to be… the usual mantra is, “But honey, remember when you couldn’t even walk to the mailbox?!”

    As we approach the year anniversary of her last concussion, I have been doing a lot of reflecting on the past year. What really resonates with me when I think back on our year, which, undoubtedly, has been full of struggles, is how much I remember the good times I know that when I look back years from now, over what has and will continue to be a true test of the strength of our relationship I will see how strong we have become and I will remember the successes and fun times we had in spite of and sometimes as a result of the PCS. Without being too self indulgent, I’d love to share some of the good times and ways that PCS has been almost a blessing over the past year…

    – During her time on short-term disability from work (screen time has been one of the biggest aggravation sources for Melissa), we were able to travel to San Diego to visit her family, travel to Calgary to visit my closest friends during a difficult time for them – with a side trip through the Rockies, and travel to Denver for a friends wedding! These trips are things that would have been next to impossible if she had been tied down to her job.
    – I have learned to be much more patient, sensitive, and in touch with how my actions and other environmental stimulants impact Melissa (and others!) This has helped me to become a better teacher as well (my job).
    – I have begun to truly cherish our “good days” together, as I never know how long they will last or when exactly another stretch of “bad days” is coming
    – I’ve learned to celebrate tiny victories!
    – I have found that I am fiercely defensive of those that I love and will stand up for them without hesitation or apology.
    – I have become more self-aware of my need to process things verbally and noticed improvements in other areas of my life as a result of the self-awareness required to live with someone who has PCS.
    – I have gotten to spend more time than I ever would have otherwise with the person I love.
    – I have become more sympathetic to others – you never know where they are coming from or what they are dealing with that isn’t immediately noticeable on the surface.
    – I have become a fierce advocate at the ice rink for safety and for enforcement of penalties (even if the offense was accidental)

    I am looking forward to a life full of adventures with Melissa, and I know, despite the PCS, that we are just getting started. I hope to see her continue to improve over time and I sincerely hope that your husband does as well. If you ever need anyone to chat with, please feel free to reach out to me!

    Happy Holidays 🙂

    Jessica

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  9. Rachael

    The hardest thing is the person you open your heart to about everything is the person you can’t tell how you feel when they have another concussion.
    It’s the loneliest place in the world to be.
    One minute you are doing something together, the next they are out with concussion for the next few days and you’ve lost them.

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