This year all the Christmas preparations and activities are going a lot more slowly than in past years. Part of it is me, part of it is my spouse. We are both slowing down — especially my spouse, who is having increasing difficulty sequencing information and understanding things when I say them the first time. They are also having difficulty communicating their ideas to me. They tend to start their sentences mid-way, and then they get angry furious when I ask them what they are talking about.
It’s not much fun, watching the love of your life decline cognitively, physically, emotionally, and behaviorally, that’s for sure. It’s heart-wrenching, and it’s very difficult to observe… not having any way to stop it. They’re also intensely anxious about… well, just about everything. If they don’t have a sense of control, they flip out. Or run away.
So, I do my best under the circumstances. I try to remain calm. I take my vitamins. I do my exercises when I wake up. I keep on keepin’ on. I work on my projects, in hope that they will allow me to earn some extra money on the side, so I can take better care of us. I just keep on, taking care of what I can control, and “turning over” the rest, as they say.
And we both do what we can. We really work at keeping the arguments from getting completely out of hand, and get through the rough patches the same way as always. I have a lot less tolerance for the fiery arguments, than I used to have. We have always had a very fiery, passionate relationship, and we’ve kept each other on our toes. But it gets a little old, to be honest, and sometimes I just don’t feel like going through the whole big loop to get to a final resting place where we both understand what’s going on.
Anyway, over this weekend, we did some Christmas shopping and got just about everything we need for family members. We’re not shopping for each other, just yet, because we have time and we don’t want to put a lot of pressure on ourselves. We also trimmed the tree a bit. This year, we are taking it in bits and pieces. In past years, we put everything — and I mean everything — on at once. We loaded the tree up with all our ornaments and lights, and it was a sight to behold.
This year, we just put up strings of small lights, and last night we did the larger lights. We didn’t have enough of the lights we needed, so the tree is looking a little lop-sided this year. We’ll figure it out, I’m sure.
Or we won’t. And this will be kind of a sad and low-key time.
I’m thinking it’s going to be the latter. For all the progress I’ve been making, and for all the strides I’ve made, I’m married to someone who is on the exact opposite end of the spectrum — too afraid of their own shadow, and too averse to hard work, to maintain and improve. They are literally letting themself go, and when they are challenged, they’ll react for a few days… maybe a week… and improve. Then they will go back to how they were before. It’s very dispiriting, to be honest.
It also makes me all the more aware of what a difference attitude makes in brain injury recovery. By hiding from it in fear and ignoring it, basically refusing to engage with it, that just makes things worse. You can’t shrug off a brain injury. You can deal with it. You can address it. You can fix a lot of things. But NOT if you’re hiding from it, cowering in fear in the dark corners of your mind.
Of course, brain injury lends itself extremely well to panic-anxiety disorders. You can get stuck in fight-flight mode, simply by right of the nature of the condition. You’re always ON, always on high alert, trying to figure out how to do things that used to make sense, and you’re constantly being surprised / jolted / alarmed by things that did not work out the way you needed them to — or expected them to.
It is so hard, at times. A real pain in the ass. And the worst thing you can do is avoid dealing with it. That just does not work.
Well, anyway, we got done most of what we meant to do. And we’ve got more planned for this week. We’re moving carefully through the steps of getting it all done in good time, and it will all get taken care of, for sure. It’s just hard, right now, watching my spouse decline… watching their thinking degrade… their physical mobility… their overall health and well-being. It’s hard watching the one person you care for most in the world, let themself just go downhill like that.
If I didn’t care, it would be one thing. But I do care. Deeply. I guess I’ll just go with that.
I like to think that since I’ve experienced so many TBIs over the course of my life, and in spite of that I’ve managed to put together a life that many people would find enviable, and I’ve come so far in my brain injury recovery, I’m on the good foot permanently. I look at my laundry list of symptoms, and then I look at my life, and I think, “Damn, I’m doing great!”
It’s true to some extent, tut that’s not the case constantly. Especially lately. I have been having a ton of issues with distractability, as well as memory issues. Last weekend, I watched the second half of the last Harry Potter movie, and I enjoyed it. While I was watching it, I was tired, but I was engaged, and I was “actively” watching it, making comments, thinking about what was going to happen next, etc.
And then the next day, I could not remember what movie I had watched the night before. It was just a big blank space, and I could not find anything in my memory to tell me what I had been watching for 2-1/2 hours that night. I knew I had watched a movie, but I could not remember which one. It was just blank. Completely empty. Void.
Then I thought about what I was doing while I was watching the movie, and I remembered lying down on the couch to watch the movie from a more comfortable position, and it all came back to me, one piece at a time.
As long as I can find a way to remember at least part of something, the rest of it is often “tucked away” in the back of my mind somewhere. I just need that access point. And the access point is often not what I was doing prior to the activity I’m trying to remember, but something during the activity.
Normally, things like this don’t bother me, but this time did. I’ve been incredibly distractable, lately — walking into a room to do one thing, then getting distracted and doing something else, and then walking out of the room without doing what I went there to do. It happens to me constantly, and I fault the job I’ve had for the last three years, for making things worse.
My job has been a non-stop parade of distractions, driven by inexperienced individuals who have not been properly trained in time management and office etiquette. They think it’s perfectly okay to interrupt anyone for any reason, and they’d been doing it with me tens of times a day, each and every day that I’m at work. It’s bad. It’s really bad. And the fact that most of my coworkers are in their early to mid-20s and have probably grown up that way, doesn’t help.
The problem is not that I’m old (as old as many of their parents). The problem is that they have no ability to control their attention and their time and their energy, and they have no impulse control. It doesn’t bode well for their futures, but that’s not my problem. My own future is my concern.
In another week, I can start actively looking for a new job. I’m in a very good position — in a job where I am needed and valued, and I have no pressing requirement to leave, other than my own personal career plans. I can take my time and pick and choose from the offerings out there, because I have a ton of experience, and the economy is picking up, and my skillset will transfer across industries. So, that’s a good thing. And as soon as I am done with these deadlines and can move along, I shall.
I really need to pace myself. I have been running myself ragged (literally) for months, now, and it’s taking a heavy toll. I have known that it was catching up with me for some time, but I couldn’t stop, because there were time limitations I had to work within, and I wanted to get everything sorted out quickly.
So, I pushed myself. Hard. Too hard, perhaps. And the result has been:
sleeping problems — not able to get to sleep on time, or waking up too early
mood issues — blowing up over things and threatening my spouse
memory issues — not being able to remember things
cognitive issues — miscalculating and misjudging all sorts of things (that I should be able to calculate and judge, like the price of something I’m selling)
fatigue — being wiped out all the time and depending on adrenaline to keep me going
pain and sensitivities to light and sound and touch
Basically, I feel like I’m walking around in a fog, half the time, but I keep going. I hate feeling like this. It sucks. And I haven’t felt this foggy and out of for some time. The last time I felt this way, I hadn’t yet started seeing a neuropsychologist, and I was just muddling through everything and faking my way through.
Now I’m back to faking and muddling… not making much effort to remember exactly what’s going on around me, because it is so much effort… just turning to other people around me to clue me in about what comes next… not worrying so much about getting everything right, just getting it done. Actually, not worrying so much about that is not a bad thing — I should have stopped with the OCD stuff years ago, because so much of what I obsess over doesn’t really matter in the long term. But my filter for what I should and should not care about is pretty much shot.
I’m too tired and too out of it to pay much attention.
So, all my activity sneaked up on me and is pulling the rug out from under me on a regular basis. I like to think that once I get away from the current job situation and workplace configuration, I’ll be able to restore my ability to focus on what I’m doing. Seriously, the environment of constant interruption has taken a huge chunk out of my ability (and will) to focus. There’s just no point, anymore. There’s no point in even trying. It’s like trying to assemble a model airplane in the midst of a basket of puppies. You get the point. There is none.
So, I actually am starting to feel better, and in feeling better, I’m letting down my guard and looking at the bigger picture and seeing where things are not so great, and where they are really good. Because I’m not so focused on just surviving every day, I am able to honestly see how harmful the situation has been for me — and to get clear about what I want instead. Ultimately, I need a skillset that will not just lock me into one industry and one way of making a living, but is going to give me more opportunities with more (read, “higher”) ranges of salary. I’m headed down that road now, and I realize that I’ve been headed down that road for some time. I’m not just starting out from scratch with this; I’m farther along than I tend to think I am.
And now that I’m taking stock of where I’m at, I’m realizing just how tired I am. I’m exhausted. Wiped out. I’ve been pushing and pushing — and I’ll need to keep pushing for the next couple of weeks. Then I’m done. Out of there. On vacation. And then on to the next thing, the next job, the next opportunity. With hopefully more chances to focus single-mindedly on what is in front of me, rather than constantly fielding interruptions from others.
I just really need to stay smart about things. Not jump at the first chance that presents itself. Not fly into another situation because, well, it’s there and it will get me out of my current jam. I need to keep a level head about things, and sleep is a huge part of that equation. Sleep whenever I can, even when I’m at work. I can go out to my car and nap. I can also take a quick nap when I’m home from work. My spouse doesn’t understand about sleep hygiene and they say “It’s okay” for me to sleep for two hours when I get home… and then stay up till 1 a.m. They are wrong. That’s not OK at all. It’s a killer for me. But they don’t get that. At all.
So, I need to be smart for myself, and understand my spouse’s limitations when it comes to assessing what’s right and what’s wrong. Frankly, they seem to be sliding downwards and becoming increasingly cognitively impaired in certain ways. I can’t put my finger on it precisely, but they are definitely slipping with regard to their judgment, their memory, their processing… in subtle ways that are obvious to me after 23 years of living with them, but won’t get picked up by anyone else.
So, I have to be smart for both of us. It’s a little like being a single parent with a sick child. That’s how it’s been for years, on and off. Only now it’s almost constant.
Add “sole caregiver” to my resume.
All this means I just need to step back and be smarter about how I do things. I started out one of my big projects with a lot of assumptions and plans I thought would pan out, but they are turning out very differently. Rather than get stuck on the disappointments and frustrations, I need to treat this all as a learning experience. Treat it like school. Business school. In the real world. With real opportunities and real consequences, not just some case study or thesis.
This is life. This is for real. And I’ve got to keep my wits about me.
And get some sleep.
I had a nap yesterday, after getting a lot of things done. Today I’m going to do the same. I’m off to run some errands that will get me out of the house and get me around people — and interact. I have a lot of questions I need to ask someone, and there’s a lot of money (for me) that I’m going to have to pay in the process, so I need to keep a level head and be smart. Not go too fast, not go too slow, and keep at them till I get the exact answers I need and know I am making choices for the right reasons.
It’s all learning. It’s all growing. It’s all the stuff of life.