Brain Injury Return Home: Gina Part Five
All treatment for those with brain injury involves a balance between the right of the patient to make their own decisions, be independent, and the need to maximize treatment, protect them from harm. As important a goal is to not endanger family relationships that will be so important to a long term recovery. For the severe brain injury survivor, the period from one to three months after the end of coma is a particularly important period in recovery. Yet at no other time are the articulated wishes of the survivor going to be more at odds with such persons “best interest”. Gina’s brain injury return home came not soon enough for her but too early for the family.
Brain injury return home in Gina’s case was less than three weeks from her injury. Her insurance company was not to blame for this shortened stay. It was Gina’s insistence on her brain injury return home.
As I have often said on these pages, injury to the brain, involves a significant shift in the maturity level of the individual, and this is especially true at one to three months after emergence from coma. As we would protect our children to live independently or make important decision with respect to their well being, we must also constrain the desires of a brain injured person until recovery has reached a point where reasonably adult decision making can occur. That didn’t happen with Gina.
Her husband describes that difficult period with her brain injury return home:
Well, our whole life had changed. She needed somebody with her between friends and family we constantly had other people in the house and we had a whole lot of other personal things going; not knowing where the future of our relationship was going to go. I mean, is this going to be a long-term thing? Is it going to get better? A lot of uncertainly.
I don’t believe she was back to work yet. She wanted to go back. She, she didn’t want to admit that there was any problems. She felt that she could still do everything she did before.
It was really confusing seeing her frustrated, you know, her frustration. I do remember just issues with her memory. She got a bowl of cereal and took the milk out of the refrigerator and got her cereal ready and when she was done she put the milk in the cabinet and the cereal in the refrigerator and, you know, confusing things like that. And it was hard to see her struggle with that.
Gina now has far better insight about her brain injury return home so soon:
I thought I would be really, really happy but one of the situations was that somebody had to stay with me. My husband was working. It ended up being my parents a lot. They, and it was great, they came in, stepped in, helped with my son.
I couldn’t stand it. I couldn’t stand having somebody stay with me. I was probably pretty rude to my parents which they kind of excused a lot of it. I called – and then if they had to go home or had to do something else, then my husband had to arrange for someone else to come in and I called them my keepers, baby-sitters.
I didn’t feel like my home was my own and I would take a lot of bubble baths just because I could go up into my own bathroom, shut the doors so no one bothered me and I was literally turning myself into a prune at times because a lot of it is, especially my mother. She wanted to help.
I know she had the right idea but it seemed like she wouldn’t leave me alone and would follow me around the house, would worry about I was going to do this, do that and it’s like I just, you couldn’t watch the news on TV without them making comments about stuff and I had a problem following it anyways. I got into watching Dr. Phil over and I would tape it and just watch it which I don’t know why or I got into Ladder 49, had the DVD and watched it over and over.
Like I said, I would argue with my mom a lot. One of the things I remember her saying more than once and it has kind of even put a damper today on our relationship is well, you have brain damage or how do you know, you’re brain damaged and she has even up to a couple of years ago, if I disagree with her about anything, she throws that in my face. It’s well, you’re brain damaged or how do you know, you’re brain damaged or yeah, if that’s the way you feel. She throws that brain damage in my face and like I said, I really, I guess it’s I don’t talk to her like a mother or some daughters talk to their mothers.
I really, it has damaged our relationship and it hurts and I’ve never really told her and I, I guess she’s getting old. My dad’s getting old. I, I don’t want to hurt her. I don’t want to start a fight. I don’t, you know, she doesn’t, like I said, she doesn’t know how much it bothers me.
The biggest problem with early discharge and brain injury return home is that the in-home professional services are rarely provided. Rather than an aide, trained to work with the behavioral issues that come after severe brain injury, the family is expected to do it. The result, a severely damaged, if not destroyed personal relationship when the survivor of brain injury return home. Fortunately, the risk of violence in such setting is not as severe with women as men. Men often end up jailed or divorced from predictable neurobehavioral outbursts, especially directed against their wives. But even without violent outcomes, the radical shift in interpersonal power and responsibility can create hard feelings on both sides of any relationship with brain injury return home, as it did with Gina and her mother.
One of the outcomes from this troubling time with her mother is a severe sensitivity to the term “brain damaged”, an issue shared by most TBI survivors. Gina explains:
Damage feels like it’s, there’s no hope to improve anything. I think damage is almost I associate it with broken and I don’t think I’m broken. I’m definitely different. I’ve got a lot of different issues that sometimes I get upset trying to explain it and sometimes I just, I disconnect.
If somebody tells me I’m damaged, it ruins the relationship because I will cut them right off. I will not tell them things. I won’t, I don’t cut them out of my life but I don’t use them for support anymore. If you – it’s just a word that I don’t know. Injuries you can get over. Damage you can’t. That’s the way I look at it. That’s the way I feel or yeah, I guess interpret it.
Would it have been better had you been cared for by an aide for your brain injury return home from the hospital?
I think so because I felt like I was being judged and just watched constantly and I would ask what am I doing wrong? What did I do wrong? A lot of it was I knew I wasn’t working and the bills were coming in and it’s like how are we going to pay these? And my mom would just say well, God’s going to provide and I know it’s like yeah, whatever.
And I was online quite a bit and actually online with my boss quite a bit through AIM and she would come in and say you’re not going back to work. You are brain damaged. You are never going to work. Why are you bothering and it’s like, you know, just so negative about everything.
Gina’s mom was wrong about work, wrong far faster than anyone might have guessed.