Ask Kathy M. Archives
A Collection of Questions and Answers from TBI Advice Expert - Kathy Moeller

Topic: Convincing Family of Memory Problems

Question:

Dear Kathy M.,

My injury was three years ago and I've made a lot of progress. I basically had to relearn to walk, talk and read again... all kinds of things. My memory still give me the most aggravation. But but my family doesn't seem to "get it." Sometimes I don't think they believe that this is still a problem. Especially when I've overcome so many things and my memory works part of the time (it's better when I'm not tired).

My dad actually said to me one time that "You did so well with everything else, I'm sure if you just tried a little harder, your memory would get better too" (hard work is his cure for most everything). Don't get me wrong, hard work has paid off, and my parents have been great! They have bought me all kinds of memory programs -- audio tapes, even software specifically designed for people who have had brain injuries. The problem is, I don't know how many more hours I'm supposed to work on improving my memory before it will start working the way I want it to. It just doesn't seem to get any better.

If my dad sees me doing something else ("when you could be working on your memory"), I feel guilty, even if he doesn't say anything (all he has to do is give me "the look" and I know, anyway). I can pretty much count on him saying to me, every day, "Well, how did your exercises go today?" (and he is not talking about working out at the gym).

What do you think? Should I keep at it, or ask him to leave me alone about this? Without fail, I spend at least an hour a day on the exercises, as it is, and unless I can start to see improvements, I don't see the point.

Marsha in Detroit


Kathy's Response:

Dear Marsha,

This is a CLASSIC example of what it is like to suffer from an invisible disability. Especially when the "problem" appears to not be there part of the time, as can happen with short-term memory impairment following a brain injury.

Memory "exercises"

Memory "exercises" are often over-rated, in my view. That's not to say that they do not have value. It's just that they do not seem to have the kind of value many of us would like them to have. It appears that your father is hinging everything (meaning a full recovery on your part) on them. The irony is that all the hard work that paid off with re-learning how to walk and talk, appears to be backfiring now, because the people around you seem to expect you to be able to make the same kind of progress with your memory.

Doesn't work that way! At least not in my experience -- either personally or networking with thousands of others with memory impairment from brain injury.

Compensation vs. "exercise"

In my experience, we get more "bang for our buck" (meaning a higher functional "payoff" for time invested), if we put energy into learning compensatory strategies. While compensation may be more effective, it is also not in as much "favor" as other approaches.

Examples of compensation include learning how to write Memory Notes we can find and use when we need them. When I explain this to folks who do not have brain injury, I sometimes us the analogy of writing down a shopping list and taking it with you, as opposed to memorizing all the items you need to buy. Even someone with a "normal" memory would not likely choose to memorize their weekly shopping list. It is an "assistive device," a "tool," a crutch, if you will, that helps a person get around (function) more effectively. Frankly, it is more comfortable -- or most everyone -- to rely on things like shopping lists instead of exerting the time and energy it would take to memorize them.

Compensation for persons with brain injury can be a little more (or a lot more) complicated. My life is filled with Memory Notes, color-coded files, clear bins, stepped file holders, tape recordings, and a variety of other "compensations." Why? Because with them I can function closer to my old level, and without them I cannot. I have chosen to operate at the highest level I am able, and for me, that means mastering the art of compensation!

I spent time in rehab. on the memory exercises too -- lots of time. Also, so-called "attention training" and other things. I now compare them to physical exercise -- with the exception that after a while, "exercising" my brain to try to improve my memory was more like exercising a sprained ankle than it was exercising a weak muscled. "Exercise" can be a power, wonderful therapeutic tool... or not...

I became very frustrated with the lack of results all the "exercising" yielded. Hence, my focus on compensations! When I mastered a compensatory strategy, or developed a new compensatory tool, I could SEE the results, sometime immediately! When I wrote a Memory Note about my mother calling me, the next day I could tell you what she said. If I also mastered the art of scheduling follow-up activities, I would actually show up at dinner with the rolls my mother asked me bring to dinner (because I used visual cues and scheduling skills, instead of relying on my Swiss-cheesy memory).

Other problems with "invisible disabilities"

Invisible disabilities come in all shapes and sizes. Short-term memory impairment can be one of them. "Word finding" can be another. So can difficulty making sound decisions or solving problems. Getting lost in the community, another. There are many "invisible disabilities" associated with brain injury.

I suffer from an extreme form of lost "visual memory" (I do not "recall" the faces of people I meet). I think more slowly than I used to. When I get nervous (or upset or angry) I "go blank" and cannot form words. I am more sensitive than I used to be to background noise, florescent lighting and motion. The list goes on....

We are "INVISIBLES." This means that we know what our issues are, even if those of us around us may not. Sometimes the people closest to us are the most difficult to convince. Sometimes they cannot be convinced. Many parents (especially fathers, it seems) are in particularly extreme "denial" about their child's injury and its ramifications in their day-to-day life. In some cases, this denial is so severe that they would rather blame the child (for being lazy, for being to focused on their disability, for a lot of things), rather than accept the fact that their child has "brain damage" (even the term "brain injury" is too much for some people to bear).

Sometimes family counseling can help (as long as you are working with a professional who has lots of experience working with all the interpersonal dynamics brain injury can present). Sometimes networking with other family members on e-mail support and discussion lists helps (like ASSIST-TBI), which I facilitate. Sometime, demonstrating how well you are doing by using compensations is another way to get family members to see the light. By the way, if you want to learn more about e-mail support and discussion lists, for either yourself or members of your family, see http://www.tbimo.org/groups.asp#internet

Stress and therapies

I too, am a believer in hard work. The problem is that hard work is not the solution to everything, particularly when brain injury is involved.

We can get more fatigued than others (or more fatigued than we used to). Our frustration tolerance can be less. We often get overloaded with things and need to take more breaks. We can have a lower stress tolerance, or we may need more sleep. All these things need to be taken into consideration as we plan our days.

Focusing too intensely on any therapy, can backfire. If you think this is happening, please take the responsibility for taking care of yourself and, as lovingly as possible, do what you need to do within your family, to relieve the pressure around you (for example, the constant reminders to do your "memory exercises"). Perhaps no one can tell you what form this should take, but it sounds like you would benefit from getting Dad to back off, even if telling him to do so may not be the best way to go.... if you get my drift. This might be a good time to get a professional counselor to give you some ideas and strategies for dealing with the family stressors you may be experiencing.

Next Steps

My next suggestion would be to learn as much as you can about the kinds of compensations others with brain injury use (both in terms of "compensatory strategies" (skill) and "assistive devices" (tools).

You can start networking with others by signing up on one or more of the e-mail support and discussion lists for persons with brain injury, and start asking people what they do. The list I facilitate is called TBI-WORKING, and it is designed for anyone who wants to talk about "work," whether it's paid employment, self employment, or the very hard work involved in making it day-to-day as a person with brain injury. You can also contact your state Brain Injury Association and find out what local resources are available to you. To see a list of state associations, see www.biausa.org and go to the state section, which is at http://www.biausa.org/States.htm

If you start focusing on compensations, not only will you see (and feel) the results in your life, but your family will too!

Hope this helps.
Kathy M.

End of content. Navigation links follow.. Right hand column contains links to the University of Misouri, a graphic version of the naviration links, and a sitewide search tool.
{ Back to Archive Index }

Home | Ask Kathy M. | Resource Library | About Us


© 2005 - Curators of the University of Missouri.
DMCA and other copyright information.
All rights reserved.

If you have concerns or questions about this website, contact Disability Policy & Studies at 573 882-3807 or the webmaster at standifers[at]missouri.edu