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

Date: January 31, 2000
Topic: Miscellaneous - Initiation and Motivation

Question:

Dear Kathy M.,

I just read your answer to another question on initiation and motivation and it prompted me to ask you about our situation.

My adult daughter had an anoxic brain injury about 4 1/2 years ago. Initiation & motivation are some of her greatest problems since they affect so many areas of life. What might you suggest to help her not only "get started," but know what to start on -- how to go about just doing whatever & knowing what to do. She doesn't seem to be able to think about what to do on her own.

Thank you, Jo


Kathy's Response:

Dear Jo,

This question makes perfect sense to me! You see, I had terrible "initiation problems" when I was first injured, so I think I know how your daughter might feel. I also learned how to deal with it, and teach compensation strategies to others now, so hopefully some of the strategies I use and teach will be helpful to her.

Motivation, per se, was not a problem for me, even though initiation was, so I hesitate to link initiation and motivation too closely together. It is possible for a person to be motivated but appear unmotivated to others. This can happen if a person is so overwhelmed by life that they have basically given up, resulting in failure to initiate or follow through with much of anything. If depression is present, this can also make a person appear to lack motivation. In my situation, I was motivated all right -- I just could not get started with many activities. It probably looked like I was the most unmotivated person in the world, when the opposite was true. Lack of movement cannot always be chalked up to lack of motivation! Keep in mind that if the two things are truly separate problems, they require different strategies.

Feeling overwhelmed -- A True Story

We all know that many/most persons with brain injury tend to feel overwhelmed, often much of the time. A typical response to "overwhelm" is to shut down. Now, most of us do this from time-to-time, whether we have a brain injury or not. But folks who have had a brain injury often shut down much of the time. Life is just too overwhelming! When we shut down, we do not initiate much of anything; we do not follow-through with much of anything; and we could certainly appear to lack motivation.

Jo, to answer your question, I looked back over some of my journal entries from when I was in rehab. and was dealing with initiation issues. My notes refreshed my memory about one incident in particular that taught me a lot about initiation barriers. While I was in rehab. I felt "stuck" much of the time, and one incident in particular taught me a great deal about why I got stuck and how to get unstuck.

Some background: In the residential rehab. program I attended, we all started out living in "the big house," a supervised living situation where we had assistance and support 24-hours a day -- help with meals, getting dressed if we needed it, help organizing our rooms, help getting ready in the morning -- you name it. As our compensation skills improved, we moved to increasingly independent housing situations. The step after the "big house" was the "little house" (a smaller house in which there was less supervision and support), and finally to a furnished, but supported, apartment off-campus. I was moved to such an apartment after four months on campus. I moved on a Friday.

On Saturday morning I woke up to about 20 boxes that needed to be unpacked. I just sat there! I was clearly overwhelmed, from the get go. I tried to open one box, but it had clothes in it and I didn't have hangers, so I stopped (I didn't remember packing hangers, and certainly didn't remember which box I had packed them in. None of the labels indicated I'd packed hangers at all). I was frustrated and angry. I felt incompetent, overwhelmed and disgusted with myself -- my life -- you name it.

Several hours later I tried to unpack another box. This one had papers in it. I dumped everything out on the table, but was frustrated because the file holders were missing. Also, the papers themselves were overwhelming (it felt like they were attacking me). When some of them started falling onto the floor, I thought I would lose my mind!

I could not cope. I knew about the strategy of "taking a break" so I went for a walk. The problem was that I also needed to go shopping (didn't have any food in the apartment) and I had left my shopping list on the kitchen counter. I walked back to the apartment, only to discover that I had locked the front door key in the apartment (I was not used to carrying keys with me and had forgotten to take my key). I didn't have my phone numbers with me either (they were on the table with all the offensive papers), so I walked to the rehab. center (which was only a few blocks away, thankfully) and asked to see a staff person. Somehow, someone showed up, took me back to the apartment, let me in, and it all started all over again! Except, I felt worse that I had that morning. I was humiliated, hungry, confused, overwhelmed and scared. I said to myself, "If, after four months of rehab, I can't move into a flippin' furnished apartment without feeling like I would go mad, how the h___ will I ever take care of myself in my own place, let alone get back to work and run a department again!"

You get the picture. . .

Shutting Down

My solution was to totally shut down! I went to bed, curled up in a ball under the covers and went to sleep (I was probably exhausted too), hoping against hope that when I woke up, everything would be back to normal. The only problem was that instead of waking up to 20 neatly stacked boxes, I awoke to the mess I had created and to feeling incompetent to deal with it. Now, "shut down" takes many forms. You don’t need to curl up in a ball and go to bed. It can take the form of sitting on the couch watching television, sitting around doing basically nothing – or worse – self medicating with alcohol or drugs.

I suffered through the day and sometime on Sunday morning I gave up altogether and placed an emergency call to my case manager, telling her that I needed to be checked into a hospital. I told her rehab. wasn't working and that I was obviously more brain-injured than anyone had thought. My heart was racing; my mind was filled with horrible thoughts; I was depressed and thinking about ending it all. She wisely sent a skills trainer over to my apartment.

He brought donuts and coffee. That helped. We chatted for a while. That helped too. Then he pointed to a single box, asked me to move it to it's own "space" (away from the other boxes), and asked me to open it. I said I couldn't. He wisely said, "You don't have to unpack it; all you have to do is open it. Can you do that much?" I said I could. I opened the box and looked at him and said, "Now what?" He said, "Write down what you have done so far."

He handed me a piece of paper and he helped me write what I had done so far, in clear steps:

STEP 1: Select a box

STEP 2: Move it away from the other boxes

STEP 3: Open the box.

He suggested I write a heading on the piece of paper, and I wrote: "Unpacking boxes." He suggested I change it to "Setting up apartment" since that was really what I was doing (unpacking the boxes was simply part of the process).

Surprisingly, the combination of writing the steps and focusing on the "setting up" part, as opposed to the "unpacking" part, made all the difference! I did not feel quite as overwhelmed. Heck, setting up an apartment was sort of fun. Unpacking boxes was not. Writing the tasks down in simple steps was comforting and comfortable. Just "doing stuff" was not.

Anyway. . . to make a long story a little bit shorter. . . we finished writing all the steps for the first box (including where to put the empty box), and then went on to the next one. This time I followed the steps myself, asking for only minimal help. By the time I was on the fourth or fifth box, I was on a roll. I used my list of steps as a reference point, and could cope with whatever frustration I encountered. My coach slowly disappeared into the background and finally announced he was no longer needed and left. Everything was unpacked and "set up" by Sunday night. I no longer felt the need for hospitalization!

Breaking Tasks into Steps

It is common knowledge that tasks are best broken down in steps. If you are a person with brain injury, or if you are coaching/helping someone with a brain injury, this is not only advisable, it may be critical! Furthermore, the steps are often best listed in excruciating (to others) detail. For example, it may not be sufficient to write, "STEP #1, "Turn on computer." STEP #1 may need to be "Look at computer monitor," with STEP 2 being, "See black button on the bottom right-hand corner," with STEP #3 being, "Push black button to turn on computer."

In my work as a compensatory life skills trainer, I use something we call a "STEPS Card" for listing steps for ANY "routine procedure" (like unpacking boxes). It is kept in the STEPS section of a person’s BRAIN BOOK® (or day planner if they don’t use the BRAIN BOOK System).

The reason they work so well is they visually cue a person for the steps they need to take to initiate and complete an activity – ONE STEP AT A TIME! The person does not start out feeling overwhelmed (yes, even "getting ready in the morning" can be overwhelming to some people) – they start out by looking at the first step and not feeling overwhelmed by it.

The image noted below is an example of a blank STEPS Card:

Image #1

http://brainbook.com/lessons/STEPS/stpsblnk.jpg

STEPS cards can be used for basic things like getting ready in the morning, or importantly, doing something that may not be part of a memorized routine. An example is "Getting Ready to Go Swimming," as illustrated with the next image (these images are from the BRAIN BOOK System lesson archive, and I was not able to separate out references to lesson content, so please forgive me for all the "extra words" in these images):

Image #2

http://brainbook.com/lessons/STEPS/stp-prctc.jpg

Note that having a STEPS card for something you do only occasionally (like going swimming perhaps), makes it possible to consistently show up at the pool with all the right stuff, even if your memory would not serve you the same way it did prior to an injury. Many/most of us are visually cue-able, which makes having an arsenal of STEPS cards a very useful tool – particularly for procedures we cannot, or should not try, to memorize!

"Practice" and "Tested" Steps

This may seem like an aside, but it is not. Many of us need to know that whatever STEPS card we have in front of us is either a "work-in-progress" or a final, time-tested set of steps. We suggest using a slightly different card for each (ours are printed on slightly different paper stock, and also differ slightly in color. Importantly, they are labeled differently). See the next image for a "Final/tested STEPS Card":

Image #3

http://brainbook.com/lessons/STEPS/stp-tstd.jpg

STEPS cards are particularly helpful when you go back to work. How many of us learn about a new routine procedure, write notes for it, and then can't find our notes the next day when we need to do the procedure again? Whether it’s punching a time clock, logging onto a computer, or setting up a work station. See the next image for how STEPS cards make it possible to "initiate" and "follow through" with steps we need to take at work:

Image #4

http://brainbook.com/lessons/STEPS/SAMPLE.jpg

It should be clear that learning how to use STEPS cards can help a person break down tasks, and successful do so in a wide range of situations. I know some people who use laminated STEPS cards in the shower to be sure to follow all the steps they need to take for taking a shower. I know others who use STEPS cards at work for doing very complex procedures that would otherwise be impossible -- completing certain kinds of reports, scanning images into a web site, executing procedures in a software program -- lots of things.

"She doesn't seem to be able to think about what to do on her own"

Jo, you used this terminology to explain how you see your daughter functioning (or not functioning, as the case may be). This sums it up well – that is, if a person has not learned to THINK in terms of steps.

Thinking in terms of steps can be taught to many persons with brain injury. It is not easy, and it does not happen overnight. It won’t happen the first time you introduce breaking something down into steps. It might not happen after the 101st time either. Having a visual tool the person learns to routinely use helps (like a STEPS cards kept in a STEPS section of one’s day planner or BRAIN BOOK® ). But even with lots of practice and all the right tools, it takes time.

A key word in your phrasing was "think about what to do." Thinking is what has been impaired, and yes, thinking about many things will be overwhelming and confusing. To this day, I routinely wake up and have the feeling that I don’t know what to do. Certainly not what to do first, second and third. I need to be able to LOOK AT something to know what to do, so I don’t need to try to think so hard.

Part of the reason I developed the BRAIN BOOK® System was to give myself one place to look for all the things I needed to have access to in order to function day-to-day. Whether you use the BRAIN BOOK System or some other system, it is important that a person with memory and organizational impairment is able to SEE what needs to be done, and that it’s organized in a way that is not overwhelming for them. This is known as having "visual cues."

Visual cues make it possible for a person who cannot "think about" what to do, to be able to do things anyway! It’s a way of outsmarting the brain injury and replacing the broken parts with physical tools and skills that restore day-to-day function.

In time, practice (some call it "massed practice" or "overlearning"), will empower the person to do more and more on their own, as well. You will need to start small and build on a foundation of simple tasks with simple, detailed steps. In my experience, most people eventually learn to take on increasingly complex tasks and do them successfully – on their own. Some people will need on-going supervision and assistance; others will not. It’s often surprising how much persons with severe impairment can learn to do on their own, after they have learned to use visually-based tools.

Motivation and Initiation

In both my personal experience and in the work I do teaching life skills to others with brain injury, motivation can often be directly connected to success one has experienced in the past. If a newly brain injured person never feels a sense of success with doing the "little things," they may not be motivated to try to do more. Repeated failure de-motivates anyone! And years of failure simply compound the problem.

Jo, four and a half years of feeling incompetent is likely taking it’s toll on your daughter. This could mean that it will be even harder to reverse learned behaviors and teach her new ones (like using STEPS cards). Something called "learned helplessness" may be at play, as well.

As usual, dealing with issues stemming from brain injury is complicated. Since I don’t know your daughter’s particular situation, it’s difficult to say what is operating "behind the scenes." I’d like to encourage you to try using STEPS Cards with her – starting with something simple that you already know she would like to be able to do more independently, and see if any lights go on.

E-mail support

You might want to try some things, like using STEPS cards, while getting support for your role as a coach, from one or more of the e-mail support and discussion lists some of us are on. In particular, ASSIST-TBI, for families, might be helpful. Also, TBI-COACHING, which is specifically for compensatory skills trainers and family coaches. Participating in these forums will help you problem-solve not only the problem you wrote to me about, but also new problems that will surface (and they will).

Hope this helps.

Kathy M.

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