For the last day or so, I’ve been thinking about how family members and caregivers can help TBI survivors overcome their difficulties. One of the things I rarely mention here, is that I’m not just a TBI survivor, I’m also an ABI caregiver. Someone close to me had several strokes a few years back, and since there as pretty much no one else they had — family is several states away, and their friends all pretty much disappeared after the strokes — I have ended up being their main source of support as well as rehabilitation.
I probably should have talked more about this, but my focus has been mainly on myself and traumatic brain injury, rather than stroke/acquired brain injury, and the times when I’ve sat down to write, I’ve often found it difficult to discuss what goes on with this situation (it’s been pretty intense at times). So, I tried to keep things simple and so I stuck with myself.
Now, however, I think I’m ready to start talking about what it’s been like to be in close contact with someone who has experienced a stroke (or two or three), and what it’s like to work with them to get back. It’s been a pretty amazing process, when I think about it. A TBI survivor with plenty of their own issues helping a stroke survivor get back on their feet… you don’t see that every day.
But I have to say, learning how to deal with my own issues has really helped a lot, with my work with this close friend. In fact, working with them and helping them regularly really got me thinking about my own issues. I took several months off work when they got sick, since I had some savings I could fall back on, and I couldn’t just abandon them like everyone else had. And it wasn’t until almost a year into their recovery, that it suddenly dawned on me that I was having cognitive issues, as well. It really took until after the initial crisis and trauma had faded, for my thinking to clear up well enough to see how poorly I was coping. I was coping, sure, but I felt like I could have been doing a whole lot better… and no matter how hard I tried to do better, I couldn’t seem to get my actions to match my intentions.
So, I took it upon myself to track down my TBI issues… all the while in the background, there was this underlying theme in my life about helping someone else cognitively rehabilitate and get back on their feet. I’m not sure why, but it was like there was this really pronounced divide in my life — on one half, there was my work as a caregiver and rehabber for someone else… on the other half, there was my quest for information about my own cognitive issues. And for some reason, never the twain did meet, that often. This seems to be related to the tendency I have always had, to strictly divide the different sections of my life — school/work vs. home, friends vs. family, business vs. pleasure. I know a lot of people, but most of them don’t know each other. There seems to be a part of me that needs to keep different parts of my life separate and distinct, as though I’m afraid the the blurring lines will complicate everyting and plunge me in to chaos.
Well, whatever the reason, I’ve spent about the last four years dealing with brain injury issues on a daily basis, and a fair amount of my time has been spent dealing with someone else’s issues, not just my own.
It’s interesting, where I see overlap between my issues and my friend’s. They have many of the same problems that I do, but they are a very different person than I — much more emotional, much more given to anxiety attacks and paranoia. They had several left-brain strokes that we knew about, and other portions of their lower brain area showed lesions on the MRI from events that nobody knew about. Many of their issues seem exactly opposite from mine — where I am often oblivious to danger or risk, they are acutely aware of it. Where I am often open to doing things that make no sense in light of my limitations — taking on three extra jobs, when I already know I’m overly tired, or going on expensive vacations when I can barely pay the bills I’ve got — they are closed to many, many things that I wouldn’t consider that daunting — like interacting with strangers, getting out of the house, finding a job, etc.
In fact, many of the arguments we’ve had over the past four years have been about them thinking I’m pushing them too hard or I’m too risky or daring, or I’m not being careful enough… and all the while, I’ve thought they were being over-the-top paranoid about simple everyday things.
Now, you could say that this is just personality differences, but I really believe that many of our differences have been exacerbated by our brain injuries.
For example, not long after my fall in 2004, I went for a walk in the woods with no bright colors on, during the early morning hours on one of the first days of deer hunting season (when there were clearly audible gunshots very close to where I was staying), and when people got scared about my risky behavior, I just laughed them off. I couldn’t see how much danger I was in, even though I encountered a deer hunter who had his rifle trained on me, till he realized I was not a deer. That’s the sort of thing never happened before my fall in 2004, and it doesn’t happen anymore, thankfully.
In my friend’s case, in the year or so after their strokes, they became severely agoraphobic, and extremely limited in what they would do and where they would go. They were terrified of doing anything that might exacerbate their condition, and they became compulsively fixated on what they ate and what was going on with their body. Now, I know that people who experience a severe health crisis are prone to do this, but they went about it in a way that was so slow and deliberate and careful, there was no way it was a sign of a neurologically intact person. They were very, very different from how they’d been, before the stroke.
My one regret is that I didn’t spend more time with them in the initial year or so, helping them get back on track. After a few months, I went back to work and I had less time to spend with them, so my involvement was limited to times before or after work, as my schedule allowed.
Looking back now, I realize there’s a lot I could have done. But at the same time, I was still reeling from my own TBI just two years before, and I was still pretty derailed in many ways. So I guess I did the best I could under the circumstances.
Looking at my friend now, there is a real difference between how they were in 2007 and how they are today. They are still way more deliberate and plodding in getting things done (just try getting out the door to an appointment on time), but they have regained a tremendous amount of cognitive flexibility and resources.
One of the areas where we’ve had to do a fair amount of work — and we’re still working on it — is in the area of impulsiveness. I’ve written about my own impulsiveness, but there’s their lack of impulse control, as well. It has been utterly maddening, to walk into their house and find the evidence of them starting many, many things, then obviously getting distracted and walking off to do something else. Food left out on the counters… clothing left in the washer for so long that it’s soured and has to be thrown out… wrappers and packaging lying around instead of being thrown away… the oven turned on and then forgotten about…because they got distracted checking their email.
I worry about it at times. What if they leave the stove on, and something catches fire? They’re a deep sleeper, and who knows if they’d wake up if there were a fire? They also have the smoke alarms in their house disabled, because they forget that they have something cooking and it burns, and then they have this ear-splitting shriek to contend with. Their “solution” is to remove the battery from the smoke alarm and continue to burn the toast.
I’ve discussed this with them at times — very carefully, because they get defensive and then yell and verbally attack me, and then nothing gets accomplished. I’ve called their attention to the fact that they’re forgetting things and wandering away on impulse. They sort of know it’s an issue, but I have to tread lightly because they’re so defensive and self-conscious about it.
What to do?
Well, I have been taking clues from my own neuropsych and I’ve been taking a more cognitive approach. That is, I’ve been trying to engage them in thinking things through ahead of time, getting clear on what it is they set out to do when they walked into the kitchen or sat down at the computer. I’ve been discussing what kind of life they want to live, what goals they have, what they want to do do with their time. I’ve been trying to phrase it in positive ways, finding the good in what they’re doing and looking for the rewards or payoffs in doing things a certain way.
It seems to be working somewhat. Originally, I was taking a more “behaviorist” approach, where I was focusing on rewards/punishments, doing a lot of criticizing and brow-beating. Clearly, that got nowhere and it was largely due to my concern for their safety. Once I got real about how it was my own worry that was turning me into a royal pain in the ass, I backed off and started focusing on the positives — what did they want to do with their life? How had the good things they’d done for themself helped them live their life better? How had they taken good care? And where they’d fallen short, how could they do things differently next time, so that they had a better result?
Their impulsiveness seems to have subsided somewhat. I think that just the lower levels of anxiety (probably thanks to me not showing up after work in the evening ready to take them to task for everything they did wrong during the day), and the focus on solutions rather than problems… as well as getting in the habit of thinking and talking things through in advance, has helped. Their impulsiveness seems directly related to their anxiety level — as it is with me — so the more we reduce the anxiety through positive reinforcement, good food and adequate rest, and just quality human contact, the better they do. And the better I feel.
It also helps to laugh. I found out about this video a while back, and I showed it to them one night after work.
We both had a good laugh, and now whenever we see unchecked impulsiveness rearing its ugly head, we say “I need to wash my car!” in a really bad British accent.
Humor really helps, actually. Having a good laugh takes the pressure off, and it also reduces the anxiety that feeds the impulsiveness — which is basically an unchecked need to relieve the pressure of daily life. The more relaxed and easy-going I am, in fact, the better they do, and the better I do. Sometimes it’s a real struggle to keep cool in the face of their impulsiveness. They have always been prone to “embellish” the truth when they talk with other people — saying they’ve got 20 things to do, instead of 10, saying that they participated in some activity, when they were really just standing on the sidelines — but since their strokes, they’ve been even more loose in their interpretations of what’s real and what’s not. It’s awkward, when they’re going on about something, and everyone knows they’re lying — everyone except them, that is.
I try to be understanding and not over-react. It seems hopeless, at times, looking at their finances and trying to help them think about how they spend their money. I, myself, got into a huge jam, and I don’t want them to do the same. But I also can’t let my anxiety get in the way of the message “Well, don’t beat yourself up – just try again,”
I also try to relate to my own experiences, for clues about what might be going on with them. The more I think about it, the more I believe that confabulation may come into it — that tendency to get mixed up and say things that aren’t true, without realizing they aren’t accurate. We’ve had discussions about the “stories” they tell, and they’ve told me at the time that they don’t realize they’re not telling the truth. It seems true to them, they’ve said. So, maybe there’s something to that — confabulation. Or at the very least some impulse control issues, where they just blurt out what comes to mind.
Anyway, whether it’s impulse spending or blurting out half-truths, impulse control has not been a strong point for my friend. They were impulsive to begin with, but after the strokes… trouble. Now, we have discussed different ways to adapt – they’ve started paying for impulse buys with cash instead of their debit card, so they can see how much money they’re spending. One month, they spent over $75 on coffee and donuts and another hundred dollars or so on fast food, when they were having trouble paying their phone bill. They didn’t realize the impact, however, until I sat down and went through their monthly bank statement and tallied everything up and showed them. Then they got it — and they started using cash more often.
They still have improvements to make, but don’t we all?
The main things that help in dealing with their impulsiveness are:
- Staying calm and not escalating and making them nervous – anxiety just exacerbates the impulsiveness.
- Talking things through ahead of time, so you can get clear on what you are hoping to achieve, and why.
- Following up afterwards — in a very non-judgmental, easy-going way — to see where things went right and how things might be done differently later on.
- Sharing stories from my own life about impulsivness and how I’m dealing with it — both successfully and unsuccessfully. Sometimes the unsuccessful stories are the best, because then they get to help me solve my own issues, and they can think through their own situation in light of my experience.
- Keeping that line of communication open, and being honest about my concerns so I don’t end up enabling them at staying stuck where they are. I really believe that thinking things through and talking them through can help change how we do things — all of us, not just the brain-injured.
The bottom line really is, I need to keep in mind that this friend of mine has suffered a terrible blow in the past, and they are working their way back. I sometimes forget, considering how well they are doing now, that they were ever as impaired as they were. But they were. There are still underlying issues that need to be addressed, so it’s really an ongoing process of coming back.
The important thing is, they are coming back. And it’s hugely gratifying for me to know I played an important role in that recovery. That, alone, keeps me coming back to keep our friendship — and their health — going.