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

Topic: Memory - Difficulty with Memory

Question:

Dear Kathy M.,

My daughter, Tanya, sustained her brain injury at age 15, in 1989. We have been through MANY, MANY programs from acute rehab, high school, junior college, vocational rehab, programs specifically geared to brain injury,etc. The list goes on....too numerous to mention! Tanya was a quick learner prior to her injury. I have a teacher's education and background...however, I was never so frustrated when things taught one day were forgotten the next....many times within the same day!! How can one build when the foundation keeps falling away? Tanya knows her memory is impaired and writes many notes...but then she can't find them when she needed them! Another frustration was when Tanya couldn't remember how to do certain routine things in a particular sequence.

Janie S. (mother of Tanya, age 24)


Kathy's Response:

Dear Janie,

These are common problems and frustrations! And they are felt by both the person with the brain injury and their teachers. If this frustration continues for any length of time, everyone is likely to feel the situation is hopeless and eventually give up. The key is to make sure the foundation is solid so it can be built upon. From my perspective, as a compensatory skills trainer, it's terribly important to start with the basics and build on a solid foundation of skills. That way, the person can start to feel successful and grounded. They start to trust that their new skills have value and usefulness, and they gain self confidence and control. I'm going to guess that your daughter has not yet learned one of the most basic of basic skills -- how to write a Memory Note that is meaningful, find-able and use-able.

When the foundation is "shaky"
Many persons with brain injury know they have to "write stuff down" but their notes may be sketchy and less complete than they need to be post-injury. Or the notes lack context when the person looks at them later later. Or the person can't find them when they need them.

The result is that the notes don't have enough meaning to be useful, or they get lost. The results is that the person resorts to guessing, struggling and feeling confused and frustrated. Ultimately, this results in the feeling that writing notes is useless, and the person may stop trying.

To the people around them, it appears they are being uncooperative or lack self awareness. Perhaps they determine that the person is not teachable. This is not necessarily the case, even if the person has severe impairments. Think about it. How many persons without brain injury would continue to write notes if the notes never had meaning or could never be accessed (found) when they were needed?

If a person with brain injury does not have the skill to write, find and use meaningful Memory Notes, they will not have the tools they need to function well in terms of personal care, school, or work. Fortunately, the skill of writing use-able Memory Notes relies on procedural memory, which is generally a strength following brain injury. This skill can be taught!

Four parts of "cognition"
I've heard the process of cognitive described as consisting of four parts:
(1) information capture
(2) information storage
(3) information retrieval, and
(4) information use

If you think about how Memory Notes fit into this process, from the perspective of having memory impairment from brain injury, it becomes clear that any gaps in the process generate an unsatisfactory result. Most often, a person with memory impairment is coached to "write stuff down" but that may be where the instruction ends. It probably seems to the teacher or coach that the person should be able (somehow) to find and use the information after it's written down. After all, most persons without brain injury can find and use their notes. It doesn't seem like a big deal.

For persons with brain injury the last three components of what I call the "cognitive loop" are very "big deal" indeed! Every time the loop is successfully completed, the person feels a sense of acccomplishment and control. Whenever the loop is missing a piece, the person is unsuccessful and they feel defeated, lost and confused. Make sense?

Build on a solid foundation
I would suggest that you, your daughter and her teachers focus on helping her learn to write solid, use-able Memory Notes. Don't assume that what she currently writes down is either use-able or find-able later on. In my experience, most of the notes a person with memory impairment writes down are not use-able or find-able, even the next day, until they learn a few "tricks of the trade."

Memory Note Hints
There are a couple of guidelines you can use to coach her. One is to suggest that she try to include the word "I" or "me" in every note. This gives the person with memory impairment a shot at having a note they can relate to later. A note that reads, "Mom called me and invited me to dinner on Sunday" has more meaning than a note that reads "dinner at Mom's on Sunday."

Or, let's say the person gets a thought they wanted to capture, and wrote down "take a class at the community college." Let's assume they saw an ad for an art class at the college that interested them. It may have seemed like enough at the time, to write "take a class" or even "take an art class." But in my experience, the surrounding context may be lost to the person the next day when they look at the note. That is, unless it reads, "I saw an ad for art class at the community college that interested me. I want to call them to find out more." This note is complete, has context, and tells the person how the note relates to them.  

Another guideline is to discourage what I call "barked orders at one's self." Examples include things like "get milk," "pay the phone bill," and "call Mom." In my experience, this "style" (which can become habit), over time, tends to overwhelm and discourage people. The notes don't contain cues about either how the note relates to the person or the relative importance of each item. The following examples provide more texture and meaning: 

- I noticed we're low on milk, I should get some this afternoon

- The phone company called me, payment is late, they will turn off the phone if I don't pay the past due amount today

- I want to call Mom, I miss her

Keep in mind that to the person with memory impairment who sees a note like "Call Mom" may or may not connect to "I miss her" to it later. Instead, it may mean nothing or it may even feel like nagging. Heck, the possibilities for confusion are endless, when memory impairment is involved. The note must capture the essense of the moment, as well as the raw facts. 

Skills Transfer
After a person gains proficiency with writing Memory Notes, these skills can be transferred (used) for other cognitive functions. If instructions a person is given at school and work can be successfully "captured," the person can move on to the next phase, which is to "clarify and verify" that they heard and captured the information correctly. You can't practice "clarify and verify" until Memory Notes skills are solidified.  

Similarly, processes known as "sequencing" and "chunking" can be taught after Memory Note skills are in place. Janie, you mentioned that Tanya can't seem to learn how to do certain "routine things in a particular sequence." This may be impossible for her to do -- until she is able to write use-able meaningful Memory Notes. Note that these "sequences" (steps) probably need to be recorded by her and put somewhere she can see and read them when she needs them (for example, the steps one would take in executing the routine procedure of filling out a time card at work). 

The person is often tempted to try to memorize such a procedure, but since memorization is not a strength, they end up being perpetually frustrated (add to this all the other procedures they may be trying to memorize and you can have massive frustration). On the other hand, if capturing, storing and finding information in the form of Memory Notes has become a solid skill, this next step of capturing, storing and finding steps for a variety of routine procedures, is do-able. Procedural memory IS a strength, and mastering certain key procedures (like writing use-able Memory Notes) is usually learn-able following brain injury. When basic compensatory procedures have been mastered, the person can dramatically increase their functional ability! 

My suggestion to anyone who is working with someone with a brain injury, is to make sure they have a system for writing, finding and using Memory Notes that works for them, before you challenge them with other, more complex tasks. Mastering the art of writing use-able "Memory Notes" is a task unto itself!

Kathy M.

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