Dividing the line: Coping with Caring for a Person with a TBI

caring for caregiver

“You have the most amazing husband in the world.” I hear this all the time from people, and you know what?  They are right, I do. However that being said, there is so much more to the dynamic of my marriage than most people realize.  You see not only am I the wife of this amazing husband, but I’m also his caregiver.

“Brain injury affects the whole family.”

This is soooooooo true, and often keeping the balance of that affect can be daunting.  No matter how hard you try as a caregiver, you will feel frustrated, depressed, feel like giving up, feel emotionally drained and strained as you try to cope with loving and caring for someone who has a brain injury on a day in and day out basis.

“Some people ask me how I divide the line between being a wife and partner to being a caregiver for someone who has a brain injury. Let me tell you it’s not easy. Sometimes the line becomes blurred and the road can become very rocky and confused.”

There are days when I joke about my husbands brain injury because of his short term memory loss. FD (Forget Dad) will have good days and bad days. He will have days when he has to sleep and people think it’s because he’s being lazy (so friggin far from the truth) and days when he does great and keeps me on toes. Days where being a parent gets the better of him, and then days when laughing and playing with his boys is a priceless moment he will never retain.  But no matter what I’m always a caregiver. He is always a priority, a responsibility much like having another child, I worry about his well-being and his care.

No family is ever prepared to comprehend the full magnitude of the life changes the injury creates. Most manage from day to day, learning on the go and drawing on reserves to get them through.”

We live our lives by the seat of our pants and yet around a schedule of sorts. I know you’re saying how is that possible?  Well you take each day as it comes, and you try to keep things as organized and easy as possible so as not to overwhelm the person with a brain injury.

“Being a caregiver to a person with a brain injury, you have to learn to shift gears instantly, expect the unexpected, handle any situation that arises and do so with the same patience and love and understand you would with a five year old learning all over again.”

That’s not say you treat the person with a brain injury like a five year old, although my hubby will tell you that there are days when people walk in my house and both he and my boys are all sitting on the floor having a time out which mom called.  Yes it’s true. I rule the roost. I have to. I am not only dealing with being a caregiver to my husband but to my youngest child as well. So it’s uniquely important that everyone listens, everyone stays on track and we resolve any family issues we can. That’s where shifting gears comes into play.

“It’s difficult to go from being in caregiver mode to instantly wrapping my arms around my husband and kissing him like two teenagers and seeing him as a strong man who is protecting me, loving me, showing intimacy, when five minutes ago I was jumping in to stop a squabble or melt down he was having due to his brain injury.”

You just learn to cope. One day at a day. I am not perfect. No person is. But it’s important that family and friends support and understand, not only the person who has a brain injury, but the caregiver as well.  It’s a lonely occupation being a caregiver. It’s difficult. But just remind yourself that you are doing the best you can, take is slow and understand that your life although full of the unexpected and surprises — is also rewarding and important as a caregiver to someone you love.

Are you a caregiver to someone with a brain injury?


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