Caregivers for Brain Injury
What can we do to protect the spouse, to protect the mom, protect the children, from that first six months to a year of real neurobehavioral extremes, to keep the family intact?: “Well the first thing is they have to have the knowledge. They have to know what could happen. I mean not everything is going to happen, but if you don’t know, it catches you by surprise. And here’s what I’ve learned from the different things. Once (the survivor has) said something to (a caregiver) and they think that it was true (how does the caregiver not take that personally.) So you’ve destroyed that, you can’t stop that feeling. Again, Hope International believes that 90 percent of the teen suicides go back to a concussion that wasn’t treated. You need to let families know. I mean it might be a concussion, well let them know what to look for, let them know that a month or six months down the line, cause symptoms don’t necessarily happen right away. My aggressive symptoms didn’t happen until about four months. And, you just need to know.”
Craig explains that families and teachers need to understand what they are dealing with: “Families, yeah, start in school, I think, getting all the teachers to know what’s going on. That’s been my goal in Washington, because teachers spend more time with our kids than we do. If teachers think this, they’re always taking drugs and you know it’s not always drugs, you know. And if it is drugs why are they using the drugs? I think we got to get the people who are in contact with our kids most. Doctors aren’t going to do it. You can pass the laws to make them do it, but I think it’s the teachers and the families that have to know what’s going on and once they know what’s going on, just like cancer, it’s no longer a hidden epidemic.”
When asked what role caregivers played in his recovery he responds; “Well they would encourage you of course. They’re, the good caregivers, generally caregivers are good people and do good things, and so I’ll, I’ll mostly stress on how much importance it was that I would hear good comments. The number one comment was, to hear that they, they just cared that you got better. To hear that others cared, to know that people sent a card, or especially when it handwritten card, you know, or a child writes, very important. But like to hear from my wife. My wife was with me, 24 hours a day, seven days a week for, for a couple years “ always at the hospital every single day.”
Jeremiah explains how to not get frustrated with his caregivers; “You have to try your best to keep it inside of you. And I know that if I’m talking to whoever it is that I’m talking to, it’s going to be difficult as heck to, to keep all of these things inside of you, because you have so, so much frustrations from so, so many things that is happening to you. But you have to, have to do your very best to keep it within yourself, not to deflect the person who’s there to help you away from you. And, and it will be difficult for them, so very much too. So this is what you (the survivor) have to realize as well – how difficult it’s going to be for the person who is actually helping you. Their whole life is going to be changed in a dramatic negative way. But they’ll also get some very positive things to build your lives together, because you will see, and hopefully you will succeed in, in your tasks of caregiver and receiver. You will see a building of a foundation that overwhelms such difficulties as the worst things possible ever imaginable. And this is what I believe that we have done (looking at his wife). It’s not at all without difficulties and arguments and such, but it is so with any spouse.
What would you tell another survivor about the kind of little things they can do to keep those people who love them feeling good about, about all the effort it takes.: “Tell them you love them. Tell them you don’t want them to leave you. Just let them know what you care about them because this is why they’re doing this. It’s because they love you and care for you but they’re also doing this because you love them and care for them and so to hear that from somebody is very, very, very beneficial to them to drive themselves just as it drives you, they need it as well.
The importance of community in recovery will be discussed in much greater detail in this story, but it is a common theme that the relationships that were built because of the connection to others that came from rehabilitation, become central to life going forward for both the survivor and the caregivers.
What would you say to your mother?: “Thank you and I feel “ I’m so glad that I can say thank you to her now and to all my family and all the people who were really there with me, thank you for being there and loving me and trying to say those things even though I would curse and swear and all the nasty things right back at them but thank you so much for doing that, yeah.”
Lori talks about how her boyfriend helped her: “He was a big force, a big source of strength for me. I would want to do something and he would say â€“ like maybe it was balance; standing or, or, side walking or â€“ and I would express to him that I wanted to do that and he’d say try it. And there were times when I’d say oh no I can’t,and he’d say ‘ I’ll hold your hand.â€ So that, he was very supportive there. And I remember him more of support than romantic.” So I guess I was learning that I was a female. And I had that affair and my boyfriend at the time, I remember â€“ it gets so confusing “I remember when I was back at my apartment, living with my roommate Robin, and my boyfriend would come visit me, and he would go into another room and use the phone all the time, and I thought he was trying to find a normal girlfriend, not me. And that also is about the time that I had that affair, because I was, I remember that I was just so confused. And I just didn’t know anything and I just wanted to be loved for who I was, not who I was prior, and not who I was going to be but for who I was. And so in that affair I; so in answer to your question, about the romantic involvement. I misinterpreted him,
In reading my book I think that people, that family members and caregivers will very much more be able to see what we go through and what we’re seeing. I think that’ll give them a new compassion.
Tell me about the physical disability he has right now. “He needs help walking. He is now right handed after being left handed for 51 years. He wears glasses all the time now. He never wore them before all the time, but he wears glasses all the time so he can see. He needs help getting dressed and bathing and putting his shoe on. He’s got, he had a bad ankle to begin with, but it’s gotten worse because he wasn’t able to use it for the first two months. He’s gotta have special shoes because he’s got a brace on his left foot that has to fit inside of his shoe. “He’s, as far as his brain, I personally think he’s almost all the way there. He might even be a little sharper now than he was.
For Nancy’s parents, as with almost all of the caregivers we have interviewed, there is a sense of exhilaration that she not only survived, but that she came out of her coma as quickly as she did. Yet, after a few months at home, the awareness that this is more than a few month detour increases. Fortunately, Nancy gets referred to just the right pediatric neuropsychologist, a man I highly respected during his tenure at the Marshfield Clinic, an institution which has taken a leadership role in pediatric brain injury for a long time.
Even in the world of the relatively more comfortable setting of a community college, we have found that without an aggressive intervention, thriving academically for someone with a severe brain injury can be extremely difficult. Nancy would have the advantage of continuing to live with her parents, meaning much of the challenges of getting to class, staying on top of homework, might be less of an issue for her. But when the protective shield of a school system that had been intimately involved in her recovery is removed, the disconnect between her academic capacities and her frontal lobe deficiencies could derail learning. Her caregivers, her treating doctors, her community must continue to structure her next challenges to makes sure “she isn’t done learning.” The longer structured learning is part of her daily life, the longer and better her recovery will be.
Nancy’s mom offers advice for other TBI patients and caregivers: “Educate yourself as much as possible and you are the caregiver. You’re the one that knows your child the best. You are going to be her biggest advocate and you are going to explain things or demand things or want things from the physician, from the school districts from whatever, that you think is appropriate for your daughter because you have that knowledge. And, that traumatic brain injury websites, anything you can get on chat rooms for traumatic brain injury, chat rooms, through the state and other websites that will help you understand what’s going on with other people’s cases which can help you piece together what you’ve got.” You were saying about what role a father should play versus what too often happens: “I’m going to be like Tom Selleck on the commercial where he says that fathers have to be present in their children’s lives. And even though the mother seems to take over the role as caregiver, that father is still present and needs to be just as much. And there, I mean there’s times when I just look at Otto and say, you know, and he’s, he’s right there and he takes over. Or he knows when things are getting maybe a little stressful for me.
We’ve been going a long time and we’ve been at this for several hours now. What is it that you want to say to other dads with children with brain injuries that might help them cope, get through the hard parts? : “Well, it’s really difficult at first. You learn things that you get angry about that you really have no business getting an cry over because it’s beyond your control and beyond your child’s control. Like the swallowing thing, that really, I didn’t know, I thought she was just doing it just in spite but then we talked to the doctors and it was like yeah, that’s normal and we, I didn’t know that.” In regards to the frustrations of having a child with TBI Nancy’s dad states: “And then the things that you think that a child should be able to achieve, we were going backwards at one point. Like the bedwetting and stuff like that and it, it, it wasn’t her fault, it was just, it was the brain that was doing it.And we were getting a little bit angry about it. Don’t do that. If you have questions just go ask and, and educate yourself as much as possible.If you have another sibling, don’t forget about that child.”
Talk to me about what it’s like to bring your husband home from the hospital; adjust your life to a different level of function.: “I have always been a spouse, but now I was the caretaker. Now I am almost like a mother, father, figure; having to take care of my husband, who is now almost like a child. It was a big adjustment. I stayed out of work for almost a month; the two weeks he was in the hospital, and then two more weeks. Then his parents came down to help take care of him, so that I could start going back to work. A lot of his friends were great. They’d come over and relieve me for an hour or two, so I could go to the gym or go food shopping. And we all joked around and, you know, tried to figure out who was babysitting; and it was, it was a very big lifestyle adjustment. I take care of people for a living. Now, at home, I was taken care of before; now I had to be the one to take care of everything.
What do you say to the caregivers to help them understand what you’re going through and what you need from them?: “I guess patience is a small word, or should be. It is a small word. It should be a huge word. Yeah, I say thank you. I say I love you, and I say I’m sorry every day to my wife. She says for what, and I say thank you for dinner today or thank you for putting up with my crap; for going through hell and staying with me – for helping me get dressed, for whatever the issues of hell that she has been through. Thank you for being there for me. She says, why do you say I’m sorry, I say I’m sorry because one stupid thing: I didn’t put my helmet on right.”
IWhat do you want to say to other spouses, in terms of how to get through that first six months?: “The first six months is going to be difficult. It’s a learning experience. No one has the answers. No one has a script on how it should go. Everybody’s injury is different. Patience, patience, patience, and just do your best to help and be supportive; and take some time for yourself. You can’t let yourself get worn down because if you’re not okay for yourself, you can’t help anybody else; so you need to take breaks and do what you need to for yourself, so that you can be there for your spouse.”
When the staff explained to Michelle that the outcome may be very bleak, hinting that she may want make arrangements to place him in a nursing home, her response was. What was that decision like?: “Well, it was not a hard decision because my husband comes from Italy, from a small little town. You don’t have rests homes over there anyway. I come from a very strong Jewish family, so our belief is your family is your family. You’re going to take care of them no matter what. Whether he was in a wheelchair and never got to go to the bathroom again on his own, it was, he was our responsibility to take care of.”
How did you know what to do in helping with the therapy?: “Just watching them, and it’s common sense. It truly is common sense. You can’t, you can’t fail. I mean whether you’re reading to him. It doesn’t even matter. It could be an article in the newspaper, you’re stimulating your brain. So, you know, just a lot of talking. I would put up a lot of charts around his room. I’m trying to remember early on. I mean we just, we’ve done a lot, but I had a big poster that said his name, who he was; that he was a Yankee fan and a Giants fan and on the wall, which wasn’t too popular being that we were in the center of Boston right across the street from the park. So, that wasn’t too good, but anyway. We said he had a daughter and certain things so that he would see that, and then we actually in the journal, it was, we wrote out what had happened, but very briefly and then as time progressed we actually went in more detail so that he did know where he was.”