Stories of Making Decisions 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.
When I went back to work, the difficulty in deciding (what to do when)
A store is a distraction filled world, with countless decisions to make, which most of us give little thought to. Those little decisions challenge the frontal lobes, interfering with memory capacity and the environmental challenges can cause meltdowns and huge errors in judgment. Angela recounts some of these types experiences including a trip to Ikea where she went for one thing and was at the checkout with a pallet full of furniture.
Betty has classic problems with making decisions. Deciding what to wear can take an inordinately long time, as can deciding what to make for dinner. Betty states; “I have a hard time with dinner making decisions, what am I going to make for dinner,what am I going to, what ingredients do I need to make this product, decision makings like when I go to the bank, how much money should I take out from the checking account and then I just stand there and the woman would say, excuse me but we’ve got somebody, you know, behind you, if they can go in front of you please, let them go first.”
Chris’s Mom talks about problems Chris continues to have: difficulty with motivation, planning, reasoning & making decisions, impulsiveness, roller coaster moods and emotions, self-centered behavior (i.e.,tendency to understand and see the world only from her perspective), difficulty inhibiting her emotions, and poor insight. These problems are typical of frontal lobe injury.
When asked if she had trouble making decisions he responded; “Yes, sometimes I think she does. I think some things I think she overanalyzes. Other thinks I think that she just doesn’t think through quite the way she wants to. We planning a trip down to Florida this March to Disney World and she has changed our reservations and different packages I’ll bet you six times already. I think a lot of it is just with day-to-day tasks that she seems to make a lot of, you know, unthoughtful decisions.” When her husband was asked “If she would before the accident, was she a seven or eight on a ten point scale in terms of making good decisions, judgments, where would you put her now?” His response was a five.
When asking his Dad about “Could he survive in a normal workplace?” he responds; “Definitely no. You would come out with a purchase order or paperwork of what he has to do and he could do that down to that stage but in mechanical work it never runs a straight line. There’s I always a glitch here and there. And I don’t think at this stage he could make a decision as to how to make that change. And consequently he would either sit there and look at it or it would be back to somebody for more information rather than to take off on his own”
Gordon Johnson: They were telling me earlier today that I shouldn’t ask for examples unless I’m going to warn people that I’m going to do that ahead of time though, so. What about trouble making decisions, do you have a hard time making decisions?Ian: At times I’ll have a hard time deciding whether, you know, to- figuratively put it, do you want red or do you want black, you know.
Gordon Johnson: And that person is still there but unfortunately the person who used to decide what to do is having a hard time making those decisions. So you can’t force him to do anything. But if the family isn’t there for him and there isn’t some other alternative like the church or something for him to make up for it, it’s going to be real hard.
You said that people say you make bad decisions. Why do they say that?: “Well, this for an example, I have no, I have amount for this, that and the other. Then, of course, there’s always something that’s going to jump in there. And, if I don’t have it, I’ll find a way to get it. You know, I do it legally. But now, doing it legally may even set me back long
term more than I need to be; where if I didn’t do it that way, and just bite the bullet up front.”
Do you have problems making decisions?: “Oh yeah, that’s, yeah.” Such as?: “Like buying something like or a certain kinds or ” Do you go to the grocery store?: “Yeah, sometimes. Or a department store too, you know and you want, you want to do, I don’t know, it’s, I have a hard time making a decision.” Do you have a problem when there are too many choices?: “Yeah. But then I was looking in Consumer Reports. I got to rely on something like that to help make a decision.”
What was the planning process like? Decision making can be very difficult after a brain injury. Did you make those decisions, or did someone do most of that for you?: “Yeah. My husband and I did a lot of it. When he asked me to marry him – we dated for like four years prior to the injury, and then we got married three years post injury, so that’s seven years. So I planned to marry this man for a long time. And so when he asked me to marry him – when we decided to move in together, I said, “I can only live with you if we are engaged, if we are going to get married.” And so we got engaged and we lived together. And as soon as he asked me to marry him, I said, knowing that I know him, I said, “All right, we got to set a date.” So we set a date right away. I just knew I had to do that, and planning, he and I did it together. And maybe because it was so informal and so little, and family and friends all helped. I remember I asked the ladies that were in my wedding to help me all the time, and to help me in knowing what to do. So no, that wasn’t a planning problem that I know of.”
It’s hard for me because it’s been so long, that everything that happens to me seems normal, is regular. At least three times a week have like a, do kind of a closet dance, where I’m picking out what I want to wear 1,000 times. Does this match, this kind of thing. I guess everything that’s real important, anything that has to do with my health, or my business, or my life, or my pets, or my husband, if I can’t come with a good answer then, I’ll write it down, so I don’t have a trouble, problem with that, I guess.
You said she has trouble making decisions and now you’re asking her to make a terribly important decision. At least start to. What kind of a struggle is that for her to have to answer something as significant as to what do you do with the rest of your life when in some ways you’re, you’re thinking like a 12 year old, a 13 year old?: “Well I think that once again there’s that processing. She wants to be a dolphin trainer. Ok Nancy, do you understand how long it, it’s going to take you to be one? Do you know the studies that are involved? Let’s talk about that, and, this is what you’ll have to do, A, B, C and D to be this. And then she will say I don’t know. I think she’s realizing things have steps. To get to be the president of a company you have to go through this to be, to be that. And I, and that’s not something that she used to think about and now I think it’s happening.”
You said he had a child-like dependency when he came home. Is that less than it was?: “Less so than it was. I mean, he’s getting more confident with certain things; more independent with certain things.Occasionally, it backfires if he makes a decision that he probably shouldn’t have made, without consulting me; where before (early in his recovery), he would have consulted me for every single thing. ow, he’s trying to, and I encourage him to be more independent. But, of course, there are still some things that he should check with me, if he’s not sure, and other things that would be just a courtesy of a husband and wife to check with, before either of us went forth and did something.” He’s having some trouble with decision making?: “Yes.” Primarily in the area of more complex judgment issues?: “Yes.” Do you have difficulty connecting all the dots in the circle of making decisions and judgments?: “Sometimes yes. I don’t know what you’re asking, but I don’t have an example but I’m just pretty sure the answer is yes.” Well for example, you, she’d given you the authority to make the gift, but you hadn’t been able to reason through what you could afford. And that was a concern?: “Yeah.” Do you have problems with decision making after severe TBI like making little decisions, such as things like going to the grocery store or what to do today?
While talking about shopping Steven states: “Trying to like if I can’t find the one thing that I’m looking for making a decision of what I can substitute for it or whether I just can do without it or – I don’t know. I have a little problem with the decision making itself, maybe.”