Stories of Returning Home after Brain Injury
The following are stories of real life survivors of brain injury. Clicking on the titles will take you to their actual story.
Chris and her mother talk about the 10-month transition from a nursing home to her family home after recovering from a coma. Concerns for Chris focus on difficulties such as managing stairs and friends whose names are hard to remember. Chris’s mom discusses the behavioral challenges related to weekend visits-having to set limits with a physically strong adult who refuses to return to the nursing home after the visit ends. From her mom’s perspective, the two key ingredients to making this transition successful were involving the entire family in the process, as well as having an understanding employer.
After Chris returned home from the nursing home, high school and Chris’s friends played the next important step in her recovery process from brain injury.
The real world, it’s, it was, it was kind of tough at first. I do have an aide that comes in. They were, they do allow me to have an aide that comes in once a day for two hours a day to just come around, do basic household chores that I can’t do by myself.And basically it’s was just kind of, just, you know, living in the real world again, being able to get out a little bit and see what the real world is like. Now that I have my own computer so I can be talking to people on the computer, my own phone. And I can also walk again. I walk down to the KwikTrip, that’s like two blocks from my house, so I walk every day to get the paper because I like to read the paper, so I walk down every day to get the paper and walk back.
Coming home from rehab after a severe brain injury is always a mixed bag. There is the joy of reunion, of return to normalcy, of release from an institution. Yet that is soon replaced by the complexity of a survivor transitioning from the intensive care provided by professionals to being guided by a family trying to cope. Fred’s Mom explains some of the frustrations of his return home; “I think opinions. He might think something that – one way, I might think it another whether it be a, a conversation or the way something should be done. We would clash is, is the biggest part. He might say something like well, I want to go do this today and I say well, no. I don’t want you to do that today. Well, then he may get angry or he might, you know, sometimes when he does something even small as what I’m going to make for a meal or if I’m going to do one thing but he wants this done first. And it would all get done but that would throw him off.”
Fred’s Mom tries to explain what would have helped her to know before bringing Fred home; “Well, I don’t know. I know that when he came home I didn’t get â€“ for some reason we kind of fell through the cracks and I didn’t get a lot of the professional support that I should have had. I think that that is, is something that parents of course aren’t going to think about. But facilities and places like that need to be very aware that that the parents need the support because it’s, it’s frustrating.You, you often wonder if you made the right choices in, in bringing them home. You have to worry about anger with your, you know, yourself. Not their anger but your own anger. You got to make sure that you always remember and I always try to remember that when he was doing things that would upset me, that a lot of times it was just because of the accident, it wasn’t necessarily him.”
While much was changed by the accident, her will to succeed, her native ability to learn and her determination to get things done, has pushed her to a faster and fuller recovery than might be expected. But despite her accelerated pace of recovery, the coming home part was hard.
Less than three weeks after her injury, Gina is back home. Her insurance company was not to blame for this shortened stay. It was Gina’s insistence.
Now, you’re at Vanderbilt. I know on your web page you refer to yourself as having graduated. Tell me about leaving Vanderbilt.: ” Well they put you first of all in and inpatient program which is about three weeks. It’s a three-week inpatient program, because insurance will only cover up to 21 days. And then you would leave that program to be on your own for a period of time to see how you would acclimate to being in a non-structured environment. So I came here to home with my mother.” Talk to me about coming home. What’s it like to return home as a, a woman in her mid 30s, with some disability living with her mother, but at least out of the hospital setting.: “Well it was hard at first because your parent, your family. I mean you’ve just undergone a very horrible traumatic incident which involved them. So they become a little bit more over protective. Well when you’re a very autonomous person which is an independent person, it like, it like stifles your motivation. And I was going, I was beginning to go into that, hormonal change that most women in their mid 30s go through, when they hit their early 40s. I was just starting it so my, my hormones I say were off kilter just a little bit.
He was discharged home from Mercy in January, about four months after his accident, but had serious trouble at home. He was then admitted as an inpatient at Lakeview in Hartford, Wisconsin. He was in Lakeview until October 15, 2001, more than 13 months after his brain injury.
His sister explains on his return home; “And I witnessed the explosion of joy when he returned home from the hospital. That must mean he was better, right? Maybe now things could return to normal. Maybe even a better normal? And I witnessed the difficulties with the return, the inconsistency of moods. I remember getting into fights with him, being afraid that I was going to be hit, the hand would raise, pause, and I witnessed the struggle between rage and reason on his face.”
That support was evident when he enjoyed the Y2K New Year’s Eve celebration, two months after his accident.: “It was December 23 and I was going to be home for Christmas. What’s more, I was returning home for New Years Eve and this was the big one. Into the year 2000 and assuming we weren’t all killed by the Y2K bug, I was returning home for the mother of all New Years Eve celebrations. See, Bloomsburg was going all out for the First Night celebration. This sort of citywide spectacle to bring in the new year and there was going to be live music downtown and games and the Rotary Club was going to dance the polka and there was going to be lots of fried food and it was going to be my first trip downtown and everyone was there! And I remember we walked around with my parents but we saw my friend and my parents’ friend and people I had never met before but who had heard about me through their friends and I thanked each and every one of them for their love and support and told them that without their love and support I would not be where I am today and then they would usually laugh.”
Do you have a good enough memory of the time you went back to your parents, to describe that? : “I remember when I was staying with my parents. I don’t remember the day that I moved back in with my parents. I’m sure it was a great day but I don’t remember it. But I remember moving back in to my parents’ home. That home was the same home that I lived in from the time I was 7 years old, so I knew that home very well. And my new bedroom in my parents’ home was the guest, their guest room. My old bedroom was taken by my little brother. When I first went back to my parents’ home I wasn’t walking very well. Actually, because you asked me about walking, I couldn’t walk up and down the stairs, I remembered a technique I used when I was a child where I would go up the stairs backwards by moving my butt up one step at a time, so I remember I did that when I first moved into my parents’ house.”
Tell me about the first time you took him home.: “The first time I took him home was Thanksgiving so his accident was September 1, 2009, I took him home whatever, November 24. We had a lot of help there. I had to have help getting him in the house, out of the house. He pretty much just laid out a hide-a-bed in the front room, the most, most of the time.”
What’s the homecoming like when she comes home? You’ve got all this family that was there for her originally, what’s it like when she comes home from Madison?: “Well, the kids at this school had sent a lot of things down there to her, They sent a photo that said Nancy, hope you get better. So she had the photo of her classmates, so we could go through all of their names again and make sure that she knew them. She had a photo of her cousins to go through those names and she also had cards and letters that came, just crazy down there, it was bizarre. We had a stack of mail more than all the other people on the whole floor combined was in her room, it was just wonderful. But when she got home it was a little difficult for her because she was so fatigued that she couldn’t sleep.
Quinn picks up the story, as to his first return home: “I couldn’t walk. My father-in-law had to help carry me in, in the house. You know they should have sent me or pushed me to a rehab and instead they just kind of dumped me on my wife and said that he’s done. He, he’ll get better. Twenty-four hours later I got rushed back to the hospital because she thought I was having a stroke or something and I had, I think it’s called SIADH, which is I was drinking a gallon of water and peeing out an ounce and I couldn’t eat. Everything was, everything, the brain was messed up so I started mumbling and, and not being able to talk. So, she thought I was having a stroke, called 911. Got me back into the hospital and she said we’re not going back to Delray because she argued with them and said he’s being, he’s getting worse. He’s not getting better and they said, no, he’s, he’ll get worse before he’s better.”
Rita’s mom talks about Rita coming home: “So ever since she then came home in September of 2011, like the middle of September let’s say, she goes to physical therapy three times a week, she went to speech therapy for a while. We did the vita stem thing for her throat. She has to drink thickened drinks because her throat’s not kind of, you know, doesn’t swallow liquids that well; still goes down into the lungs. She had a feeding tube. We got rid of that in, in March of, of this year. She went home with a feeding tube.” So when she came home to your house, was she ambulatory?: “Oh, no. No.” Does she walk now?: No. No. She’s in a wheelchair. No.” When she came home, was she a basically 24/7 care responsibility?: “Yes. She still is.”