Coping with Impacts on Memory & Cognitive function
For many of the Veterans we talked to, coping with the impact of their injury on their memory, organization, and other cognitive functions was an ongoing challenge. That said, we heard many stories about how people regained skills they lost or found ways to manage and overcome their shortfalls, including tools and strategies for improving memory, utilizing services to help with notes and test-taking in school, and learning new cognitive strategies through group or one-on-one counseling.
Regaining skills that were lost
Some of the Veterans we talked described how they regained skills they lost after their injury - like reading and processing information – and strategies they used to strengthen their memory. Mary had two children – ages four and six – and would follow along with their schoolwork, explaining that “they’d bring their school papers home and I’d sit there and copy every single thing that was on their school papers.” Although he had always been an avid reader, Tom told us that after his injury he tried to read a book and “couldn’t make any sense of it.” With lots of practice, he eventually got to the point where he is able to “sit down and read a book and retain a few chapters at a time.”
Mary had to learn to write again and developed strategies to help her remember things and find her way around.
Mary had to learn to write again and developed strategies to help her remember things and find her way around.
I had to go through some classes to learn how to write again. They first started me out with blocks and puzzles like little kids do. But shapes and holes and putting puzzles together to make the pictures and I, I don’t know. I did that for six or eight months. And after I got done doing that I ran out of money. I had no insurance. You know, the money was gone, my employer had to let me go and I couldn’t afford anything. So, my daughter was in the first grade and my son was in preschool. So, they’d bring their school papers home and I’d sit there and copy every single thing that was on their school papers. And then I’d send them down to do their homework after they got done playing and then watch TV. And they’d get their homework done and when they’d go to bed, I’d do the homework. And then I’d compare our problems, our answers. And then I’d let them take the papers home and wait for the paper to come back corrected to see how I did. And I didn’t do – the kids did a lot better than me on a lot of it. And four and six, you know, which made me feel really insecure about myself.
Remembering things. I would they, they taught patterns of, of how remember like numbers. And I got so that I can look at look at a phone and I can remember the pattern, not the numbers. But just the pattern of how to dial a number and there’s not very many I can do, but I can remember my mom’s number, my older sister’s number, my home number, and my little sister’s number. That’s it. But if you said, “Oh by the way, what’s your mom’s number?” It’s like, it, it’s gone. It, when they, when somebody asks me a very pointed, specific question, it’s like, it just, it’s right there and they say the words and I’m listening and all of a sudden it, it, it – and I, I know it’s there, I just can’t find it in my brain. I got to where, I would draw, I would write maps. Or get somebody to write me maps. And they would write on one side of the paper every turn and the name of every road I was on. And then we’d flip the paper over and I would say back - the trip back - and it would have coming back the other way. Because I would drive to St. Helen’s, to the grocery store. And coming out of the grocery store, I’d have no clue where I was. I had no clue to get from where I was, lose my car. I, you know, I’d lose things all the time and it’s just like I, I kind of systemize things.
And the older I get, the better I get at it, you know? And, and it’s like I’d run into somebody and they’ll ask me questions. And I’m like,” I cannot remember the answer. I’m so sorry.” And they’re like, “Oh, it’s no problem. I forget things.” And I said, “Yeah, but it’s brain damage for me.” And they’re like, “Oh well, you know I forget, you know? It’s brain damage for me, too.” I said, “OK.” You know? But it’s been this way since I was twenty-four, not since I turned fifty. You know so it’s, it’s really hard. But the doctor told me and I, I never, I never thought I’d live long enough there, but he said, “Eventually people will catch up with you and then it won’t matter.”
After a lot of practice, Tom regained his ability to read and says that writing and creating a structure of his own helped.
After a lot of practice, Tom regained his ability to read and says that writing and creating a structure of his own helped.
I didn’t pick up a book for months after that, and I wasn’t, I wasn’t on the internet or anything talking to my family. And I tried to read a book that somebody sent me and it was just like, “what the fuck is this, like what,” and that, I can’t make sense of any of this. It was like I could read some of the words, but I couldn’t complete a sentence and retain it in my head. And then it was like I would read a page and then be like, what did I just read? And I’d have to go back and read it again and it was just really difficult to have any kind of retention. And certain words were very difficult for me to process. And I was reading at, I mean I was reading John Grisham when I was in the third grade, not, well not that that’s anything difficult, it’s high school reading level or eighth grade reading level probably, but I was in the third grade and, I would sit around reading dictionaries and encyclopedias all day, seriously. I’m very well read but like for years it’s been very difficult to do so. I’ve just now, over the past few years, gotten to where I can sit down and actually read through a book and, and retain a few chapters at a time, but it was, it was not that it, it was almost like, I mean I’m not dyslexic, but I almost would describe it like that because it was just everything started just like blurring together and like becoming really confusing as I just tried to like organize the information in my head, so it took a lot of practice to get back to. I think writing helped a lot with that. Like, creating a structure of my own.
I: How did you get back to it, to being able to do that, you, you mentioned you taught yourself again but were there other things that helped or was it all sort of you working at it?
Practice. Yeah, a lot of practice and I think like, just having to, like, do the job that I did, had to take notes every day, so little scratch notes were easy, those like, I think, made it a lot easier to build back. And, you know, it was, it was really interesting, because it was almost like looking after myself in this way I hadn’t really done before. And I didn’t want to talk to anyone about that because it was really embarrassing, you know, like, when I pride myself on my intellect it’s, like it’s not an easy place to accept some sort of defeat, you know. Which made it really difficult in school. The first couple of times I tried going back to school, I mean I walked out of so many classes and dropped out so many times.
Practical tools and strategies to cope with memory and organization
Many of the Veterans we talked to described using practical tools and strategies to improve their memory and organization. A common theme was the importance of establishing, and sticking to, a routine. As one Veteran explained, “Routine is very important. Break from routine, that’s when your mind repels. It just causes a lot of stress.” Joseph said that adhering to a routine is the best way to ensure that he stays on track and doesn’t forget to do essential things, like eat dinner or make time to see friends. Others talked about the importance of staying busy and keeping their mind engaged.
To cope with his disability, Joseph tries to make everything possible into a routine.
To cope with his disability, Joseph tries to make everything possible into a routine.
I’ve had to try to just make everything possible into a complete routine. If I don’t turn it into a proper routine, it – I will forget to do it.
I: Yeah. So what kind of routines do you have?
Well, put something in my mouth for breakfast, because for a while there I, you know. You know, I had – sometimes I ate breakfast and it’s like, “OK, it’s dinnertime. Have I eaten yet today?” And that ends up, that ended up equaling binge eating. It wasn’t, it’s not good to play with your diet. Just making sure you start the day with something going into your stomach, rather than, well. It’s one of them – with my friends I’m hanging out with I try to keep a fairly consistent schedule for what days I’m going to see them. I oddly – to help cope with my depression, I’ve oddly used kind of a, a routine and anti-routine. When the depression does get bad, as it occasionally does, I basically try to pick a day in the future that I’ll give into it. Not saying that everything is going to be better by then, but hopefully I’ll kind of forget that day or just not feel it so much.
Carlos tries to stay occupied, keep his mind busy, stay positive, and keep moving forward.
Carlos tries to stay occupied, keep his mind busy, stay positive, and keep moving forward.
All I have to do is take what I know and stay occupied. Keep my mind busy. Stay positive and, and, and, and keep moving forward, you know. I cannot stay, lay around the house, like I used to, get depressed and eat and watch TV and do nothing but, you know, laying around or drink, stuff like that. I can’t do that, you know. And that’s been instilled in my mind, and that’s the wrong thing to do.
Quite a few people talked about the resources they use to keep up with daily tasks, such as using a calendar, making lists, and taking lots and lots of notes. Some have found their smartphone to be an incredibly useful tool for keeping them organized. Max uses “a couple different programs on my phone and on my tablet that I use every time I have any kind of appointment or place I need to be at a certain time. I put it in my calendar.” Others talked about online tools “like Lumosity and MindSpark, where you know you can sort of, you know, fire up your laptop at home and do some of these things, you know, even multiple times a day” to keep their brain sharp and active.
Mary carried around a pack of small notebooks to write things down and enlisted help from her kids to figure out their budget.
Mary carried around a pack of small notebooks to write things down and enlisted help from her kids to figure out their budget.
With my kids or with my husband, you know, something would happen and I’d say, “You said you were going to do this.” Or, “You did this yesterday and it’s not done.” “I didn’t tell you that.” “Yeah you did.” You know and I used to pack a little three by five notebook. Once somebody would tell me something, I’d write it down, write the date down, write the time down and shove it in my pocket. And I packed it everywhere and I had tons of them. And I’d get it out and I’d show them. And they’d say, “Well you dreamed it up, because it never happened.” You know, but I had no check and balance because my check and balance was them. I thought it happened, but they keep telling me it didn’t happen. Or you know whatever it is, it, they were – my kids, when they were teens, oh I had a horrible time because I was a single parent. And I had a really hard time – I sat them down, they were eleven and thirteen. I sat them down and I said, “Okay. I can’t do this by myself. This is how much money we got. This is a budget book and you’re going to help me figure out how to do it. And we’re going to make ends meet.” So at the first of the month, they knew to come to the kitchen table with a list of what they needed for the month. And I would go through the bills, I’d go through their needs, I’d go through the groceries you know and say “this is how much we’ve got left.” You know? And the kids were really good about helping me stay within those budgets. But it was like getting permission to go do things, “Well mommy already told me I could do it. I told my friends.” “I didn’t tell you that.” “Yes, you did. Ask Ray.” Ask the brother. “Yeah, you told her that.” You know, but – and they kept pulling that. And I know they were pulling it on me.
To cope with her memory problems, Karen writes a lot of stuff down, because if she “doesn’t write it down it doesn’t exist.”
To cope with her memory problems, Karen writes a lot of stuff down, because if she “doesn’t write it down it doesn’t exist.”
Yes. If I don’t write it down, it doesn’t exist, which is a big danger when you're self-employed. So, I have a lot of things written down. I write things down a lot. I do lists. I'll write down a list of all the things that need to be done, and then at the bottom, I'll write what time it needs to be done by and then I'll do backwards, take 15 minutes, I'll do this at this time. That is a strategy and I have used it in the past, but I would say I haven’t used it recently. Is running late a thing or am I just lazy? Seriously. I don't know.
Strategies to help with learning and school
Several participants discussed their experience while enrolled in school or other educational programs and the strategies they used to cope with memory loss, poor organization, and other difficulties with cognitive skills. Some of the Veterans who were in high school before enlisting in the military found that their processing and reasoning skills had diminished since they were last in the classroom. Almost everyone we talked to recalled having a harder time focusing, struggling to retain knowledge, and needing to study much longer than they felt was normal.
Scott feels like he has to work much harder than his peers in order to keep up in the classroom.
Scott feels like he has to work much harder than his peers in order to keep up in the classroom.
But then just in general, I’ve, I’ve noticed – because I like, I didn’t go to college right out of high school and I just started like a year and a half ago after getting out. And so that’s been a challenge, but I don’t, I don’t have a frame of reference to compare, like a college workload, pre-TBI versus post-TBI. And you know, I mean what I’ve come to realize is that college is just intense sometimes no matter what. But, but I do feel like – and I’ve told most of the people that I’ve talked to; I’ve done neuropsychological testing at the VA and stuff. And I’ve told most of the people that I feel like I’m putting in significantly more work than my peers, because like I have a lot more difficulty with kind of just like engaging in the classroom. Like, I really want to. Like and I guess that’s a good thing about being an older student, I guess? Like, you know, I think a lot of younger college students are maybe more just daydreaming because they don’t really care. But like I find myself doing that even though I don’t want to. And that’s a lot of the time. And so I really have to like work hard and focus really hard all the time to stay engaged with what the professor’s saying and be up with the material. And I feel like I’m always behind like in the classroom.
Some Veterans talked about services they received while in school to accommodate their TBI. Brian met with a counselor at his school’s Disability Resource Center and they set him up with a note-taker and allowed him to take tests in a quiet room and give him twice the allotted time. Sam discovered new tools and strategies to help him learn and talked about realizing that his body needs to be physically doing something – like doodling when someone is lecturing – in order for him to retain new information.
Brian talks about receiving services in school to accommodate his TBI.
Brian talks about receiving services in school to accommodate his TBI.
They have a counselor that you can meet with once a week in terms of disability services. I’m registered with DRC, Disability Resource Center, so it gives me a place in quiet to take my tests away from everybody, and because of my memory and concentration time they give me twice the time allotted for the test. So, like instead of 60 minutes it’s 120 or whatever. So, it gives me time to process everything and whatnot. Oh, and they provide note taking services. Yes, so when I’m trying to concentrate on what he’s doing in class writing it down either missing something he’s saying or trying to multitask, I can write down the important things and concentrate on one class because I’ll have a scanned copy of notes.
I: But how is - I’m just curious how is the note taking service? You know how when you’re in school you take your own notes, and you know your own hand and your reminders and stuff, what was it like to have a professional?
Oh, it’s not professional. Basically, you send in your request at the beginning of the quarter and they have all these standards, the DRC does, that the note taker - it’s like a note taker agreement. Then the teacher makes an announcement at the beginning of class, and usually four or five students will come up after the second or third class and he’ll compare all of their notes and choose who - and then they get paid for it.
I: And that’s through Portland State?
Yes.
I: The Disability Resource Center is for all people with disabilities, not just Vets?
Yes.
I: Was it difficult to get hooked up with them?
No, that was very easy. All I had to do was just bring in some VA paperwork showing my conditions like PTSD tinnitus, knee, joint, ankle problems, TBI sort of thing.
Although Sam struggled in school initially, he found new ways to learn and to manage his work load.
Although Sam struggled in school initially, he found new ways to learn and to manage his work load.
So, I got back and I had large aspirations. I was like, “I’m going to be a teacher.” And I went to school and, no, that wasn’t happening. I would forget to do homework, or I would forget to study and do all this other stuff. I wasn’t properly taking notes. This is also around the time I started seeing the psychologist and I started going to the TBI clinic. But once that started happening, I started figuring all these tools and these ways of doing it and becoming a lot more saner, calmer person, I found out school was easy as long as I did it my way. I use my learning way, which is like a kinesthetic learning way. I have to physically be doing something to, to learn. Or I’m moving, or I’m doodling while someone’s lecturing, or something like that. I have to, my body physically has to do something in order for it to learn. And that’s not how I used to be.
Finding support through counseling and group therapy
Some learned new strategies in counseling and therapy at the VA to cope with memory loss and problems with organization and focus. Others worked one-on-one with a psychologist to come up with strategies to help with their memory, mood, and organization.
Scott talks about learning strategies to cope with his memory in a cognitive therapy group at the VA.
Scott talks about learning strategies to cope with his memory in a cognitive therapy group at the VA.
Yeah, so she actually has – she’s the one that referred me to the Neuropsychology Department at the VA and initiated the whole screening, which was like hours long. And a lot of it was you know, just kind of like simple mindless stuff, like connect these two dots, you know. But then some of the other things were like memory and cognition and you know, orientation-type exercises. And that’s the stuff that I was like more interested in to see, because that’s the thing that I feel like I’m lacking on. So, I’m actually really glad that I underwent that testing to see because that’s, that’s a much more like definitive way to, you know, try and evaluate where I’m at. So, she referred me to that.
And also in light of these results, because I, I did go to the Cognitive Strategies Group. I don’t know if you guys know really about that – It’s an eight-week, an eight-week course and it, it’s offered through the VA. And I went to that – I wasn’t able to make it to every meeting, but I went to like six of them I think? And that was just kind of focused on like – you know it’s for, for people that have complaints of like memory loss. That’s, that’s a big thing too that I’ve realized is a recent issue. And I think I kind of alluded to it earlier, said like I’ve just had a lot of troubles like coding like what I hear and like, really like, like even when it’s simple stuff. You know, like the date or like, you know, whatever. But then it kind of snowballs when it’s a more complex issue, I feel like, because that’s when I have to like really get nitty gritty with it and put in more time to like cram it into my brain.
I: Yeah, so what types of things do they do in this cognitive skills group?
It was a lot of just stuff like, like strategies for like remembering tasks and you know, cost-benefit analysis and, and stuff like that. And actually, it was a lot of help, because I, I guess I wasn’t very organized before? And so, it taught a lot of skills for that. And so like, I’ve started using my iPhone calendar for like everything. Like, even if it’s just like, you know, like I need to go give this paper to somebody, then like I put it in my iPhone calendar with reminders that go off like multiple times. And like, so that’s, that’s been a big help. And it’s like, you know, it doesn’t make the issue go away but it’s like a way to address it. And just stuff, like making grocery lists and stuff. I never really did that before and then I would always go to the grocery store and as soon as I’m there, I forget what I even need. Like everything, not just like you know, get home and realize I didn’t, like, “Shoot, I didn’t buy cream cheese.” Like, it’s like I’m at the grocery store; it’s like, what do I need? You know? Like I don’t even know why I’m here. So, like making lists in advance and stuff like that – just, just general skills like that. You know, it was, it was pretty basic but it was also, it was helpful.
Alan worked with a counselor to develop strategies for coping with his PTSD and get himself a little better organized.
Alan worked with a counselor to develop strategies for coping with his PTSD and get himself a little better organized.
Yeah, well you know some of it through the counselor or psychologist, I did a, can’t think of the name. We wrote out what issues I had, memories and then we just kind of - God I can’t remember these, what it was called, but how to break things down. You know was it really this bad? And I thought it was very helpful, just kind of like breathing exercises. I went to a course here. You know now I think about it I did go to a course, just how to get myself a little better organized for PTSD. And that was though, I can’t remember the nice ladies name, she works at the Portland VA and she deals with…
I: What types of things did she suggest that were helpful to you?
Well you know just, the calendar, writing out the next month and, I didn’t you know you’re always trying to get it with this calendar. I was doing it with a big calendar at home and I thought that was successful.
(See also: Seeking Professional Help for Emotional & Mental Health; People Who Provided Support)