Stories of Family Grief 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.
I’m particularly close to my dad and a few years later after my injury my dad said that he had woke up that morning and he felt he had a sick feeling and he had gotten an emergency call so he had to go to his office. Immediately he tried calling me to tell me not to go to Kim’s mother’s house and by the time he got through my roommates told him that I had already left. So he was the one that answered the phone when the neurosurgeon called.
That first three weeks, it was just such a roller coaster, and you kind of always trust your doctor whether he’s an intern, or whoever it is, that they’re giving you the right information.
The Chris story begins with the contrast between the absence of memory for the survivor to the nightmare ordeal of the parents of someone in a coma. Chris was hurt in January of 1998, when she was 15 years old. Now she is in her late 20’s. She was a pedestrian, walking over a bridge when a drunk driver jumped a curb, hitting her from behind. Her Mom heard of the accident from a friend who was listening to the police scanner, before she realized it was her daughter.
His Dad’s pleasure also came with some sadness.I think there was some sadness and good news because it was good news in the fact that he – that I was walking, I was walking again and sadness that it’s take, taking me this long to, to get back to this point to back to where I was before my accident.
Fred’s Mom states; “It was hard. For the full two weeks after the accident they weren’t sure if he was going to make it. Literally just until he came to, it was, it was the full two weeks (that they weren’t sure he was going to live). The full first week and then the second week they were saying that it was more than likely he would make it but, you know, they weren’t sure to the extent.” The social worker that was assigned to them didn’t give them a lot of false hope and explained the prognosis may not be good.
Fred’s Mom explains the frustrations when she brought Fred 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.”
As we have talked to the mom’s and spouses, we have consistently heard the story of the shock, the unreality of the first phone call or the knock on the door. His mother was in her home office when she got the call: “It was late, after 8:00, I was doing some paperwork when the telephone rang. I answered and learned that my son had been involved in a serious automobile accident. He was in a coma? He had been life-flighted to Geisinger Medical Center?! And there are moments when the world will freeze. Thoughts, emotions, it doesn’t make sense. Frozen, as you try to comprehend what you just heard but the world continues to turn and I need to tell his father: “He was “¦.’ I put down the phone, collected my things, turned out all the lights and made sure to take the dog out before I left. I didn’t know when I would return.”
His sister explains on his return home; “And he did hit me once; not hard but it hurt. And I wanted to help. I wanted to help bring my brother back home. I wanted to be part of the rehabilitative process but I never knew what I could do; what my job could be until one day I heard my brother and my father fighting downstairs and it was pretty loud so I remained upstairs. And when the screaming had stopped I ventured downstairs and I saw my father curled up on the couch. Crying. And my father soon saw me and pulled himself together and carried on but at that moment I knew my job.”
What have they told you about your time that you were sleeping?: “My mother said that as soon as I started moving she said that she put a pencil in my hand, and that she helped me try to write, and that I began writing pretty early on. My dad really doesn’t talk about it. They’re both feeling so much pain, they don’t like to remember it or talk about it.
HIPPA rights notwithstanding, it is a shame that some bureaucrats can’t show a little bit of humanity. The last thing someone needs at a time like that is to wind up at the wrong hospital. But that story is a familiar one, too. One wonders how a health care worker can choose a career helping others and not show more empathy at a time like that. To every law there is an exception. This one has to be the med flight exception. If someone is put in a helicopter because of an emergent condition, too severe to be treated at the local hospital, sharing that information with next of kin is mandatory.
Can you put yourself back behind the wheel of the car that day. Pause for a minute, as if you are living that moment again, and tell me what’s going through your mind as you drive.: “I just can’t believe it. I actually, I think I was actually in shock. You know, I didn’t have any tears or anything, I was just quiet and she was quiet next to me because I think she knew that I just needed to think. I really don’t know what I was thinking to be honest with you. Unreality, numbness, on auto-pilot. What passed for truth when she got to the hospital was harsh, too harsh. When I got to the hospital and talked to the doctor, he pretty much told me this isn’t good and to leave my husband go – (I have reports that state that). And I was, I said to the surgeon¦ I sat there like this and he was talking to me, you know, three, four feet away and I said ” I am listening to you, I understand you. But, he needs a chance and I would like you to do the best you can do. That’s all I ask.”
Mike’s wife explains when she finally broke down; “He made it through the first night and the second night, and then actually in the morning when he told me about the second hemorrhage is when I actually broke down, and I think, you know, I just thought he was going to be okay. I was just, thought everything was good until then and then I’m like, oh no, this is not good.”
Mike – Coma Emergence
She tells of the next week:: “Well, they did the surgery and he was in a coma for eight days after that. I knew the whole while – I was there that I stayed there for like six days and I wouldn’t leave the hospital. I didn’t eat for three or four days. I just couldn’t eat. They finally told me that I actually had to leave his bedside or they weren’t going to leave me in there anymore. I needed to go eat something and take care of myself because he would need me to take care of him. And he would squeeze my hand when we talked to him. Even though he was in a coma, he would squeeze my hand and I knew he was going to be okay.”
Is that something that happens often?: “No. If we have a bad moment or something and I start crying over this situation he’ll start crying, or if for some reason he starts crying over an issue that we’re going through then I’ll start crying because I feel bad for him.”
Mike’s wife talks about the grief relating to not being able to take him home: “I was actually hoping that as long as he was at Saint Vincent I was hoping that he would be good enough when he left there to go home and then they told me that he a brain injury center and the day he left there, the 51st day, I cried for two hours before we left there because I thought he was going to be able to come home. Realistically I didn’t think of all the needs that he needed, things he needed to do to try to take care of himself and it was too much for me to, to take care of him the shape that he was in ’cause he couldn’t even sit up.”
Nancy’s mom talks about her fears of the outcome: “And at that time also I had heard that my husband was on his way coming in on the next transport ambulance and we had called all the family in and I called my sister up. I had called Laura, I can remember just telling her that I don’t think she’s going to make it. You need to get here now if you want to see her. I said I think that’s the way it’s going to happen so.”
What changed that it became real?: “It didn’t really. Well, I guess within a few days; and he was able to move out of the ICU into what they call their step-down unit; and he had started, waking up a little bit on his own, without having to be aroused in order to, to wake up. When he finally said that he recognized me, which he hadn’t the first day, and started talking and saying anything that I knew was him. A few days later he finally cracked a joke, and I knew at least, you know, he was still basically him. Then it started to really sink in that this is, this is him. This isn’t something else. This isn’t made up. This is real life. This is what we’re going to deal with.” There are many theories about the stages of grief, with most beginning with denial. Yet, in all of the similar stories I have heard through the years, I have never really felt that people were denying that there loved one was injured. It is not denial for the mind to take time to adjust to a whole new set of realities. It is not denial to not understand how dramatically life can change when a mature adult, loses so much, so quickly. How do you prepare someone for a loved one, not knowing who they are? I do this every day, and I wouldn’t be
This time it was a knock on the door instead of a phone call. A knock that signaled that life as they knew it was over, not just for Rita but for both of her parents. The only ones our current system can find to help Rita get better are her parents.
Does he go back to work at some point in the next two weeks and you start to be the one who stays at the hospital or?: “No. Neither one of us, to this day, has gone back to work. We, both of us were not able to. I mean, you can’t even think about work, and you don’t care. You know? You just really have, you just can’t do it. At least, both of us were like that.” So nothing about your life has gone back to normal?: “Oh, no. No. I mean we’re like on this mission to get our daughter as much as we can get back.”
What was that like in that first few hours of not knowing?: “Hell. There’s no other way to describe it. Well, first of all like I always say: (I do run this support group in Pasco.) You do have to come up with words to explain to people that are going through the exact same thing that we went through and I like to just say: “How many times did you think of brain injury before you were struck with this type of injury? Not much, I’m sure.-Â And that was the thing. It was the unknown. It was okay, what, what are we getting into; what is this; what is brain injury? We had no idea and no one could tell you and there isn’t a book, there isn’t an article and nobody’s got a computer; you’re just sitting waiting. When you’re in that kind of unit that they had there, there was just death all around you. I mean, no one was surviving. So, you were holding on by a thread.”