It’s always a little dangerous to look back, but when I do, when I go back to the days after we first came home from Marty’s second stroke I am aghast at how stupid I was. I knew nothing about caring for the needs of someone like Marty.
The good thing was I knew how stupid I was.
The next good thing, I learned. I read, I watched, I talked, I learned from my mistakes. And there were mistakes and there was a lot of anxiety and sweat.
Care giving is not my native skill. Care giving is not something I thought I could do. I told one of Marty’s physical therapists about my lack of skill and she said, “Don’t worry, you will figure it out.” She was right. It takes time and you never stop evolving, but you do figure out some stuff.
As a virgin care giver I was constantly worried about when to call the doctor. Before Marty got sick I had never worried about when to call the doctor because Marty always knew when to call the doctor, now I was tasked with that responsibility for someone who could not self-diagnose or even say, “I feel shitty”. I didn’t want to overlook something real and I didn’t want to be one of those guys that are constantly bugging the doctor’s office with nonsense. I didn’t know how to do any of that.
My doctor gave me a great prescription, “Don’t worry about calling too much, just follow your instinct, listen to your gut”. He was right; there was no one who knew Marty better. Even if I was a novice and trying to understand the new Marty, I knew her the best and was with her the most. That’s what I did, I followed my instinct and it turns out my instincts have been pretty good.
Follow your instincts, listen to the little voice in your head (just don’t talk to it out loud, that makes you sound nuts).
Not long after we got home after the first stroke Marty got sick again. We were home in mid-June, at the ER at the first of July. I was overwhelmed; I just couldn’t see how I was ever going to live like this. I didn’t care that others had done it; I knew I couldn’t handle the pressure, I knew it was only a matter of days before we were back in the hospital again and that every cough, sneeze, or stretch was a harbinger of the next major illness.
My friend Judy, an old friend, sent me a note quoting her doctor. She wrote that her doctor once told her, “just because you hear hoof beats doesn’t mean its zebras.” As humans we too often have a tendency to look to the worst case or make something into something it isn’t. Not every cough is pneumonia, not ever stretch is a seizure, not every grimace is another stroke.
There’s a fine line between maximizing and ignoring, just remember there aren’t that many zebras in the world. Don’t immediately assume the worst.
The last piece of brilliant advice I have is live it day to day, procedure to procedure, illness to illness. It’s so easy to say, it’s so hard to do. I struggled too often and still do with what I would call “burying Marty”. I must have planned Marty’s funeral a hundred times. When my gut told me she was sick, my gut, too often said she was dying. It is brutal and futile to live the death of someone you love every day.
It kept from participating in life because I might be planning a funeral. The truth is, I was planning a funeral and it was crazy making. The plain and simple truth was and is Marty might out live me, I just don’t know and to pretend I do is crazy, isolating and a little dangerous.
When I finally made the transition to taking things one at a time my life, our life, got better. I became more engaged with the outside world and I got Marty more engaged in everything. We didn’t hide from the world, we started trying to meet life on the new terms we had. It wasn’t great, it was hard, it is still hard, but so very much better. I hate funerals.
Live your life, live your life day to day, one issue at a time, it’s not quite as overwhelming and you still get to the end, and the ride is much more enjoyable.
I’m not going to self-righteously say I am successful at doing these three things. I’m not; I struggle with all of them.
But, I do trust myself and my instincts about Marty and we have a doctor who asks, “What is your gut telling you.” I consistently remind myself of my friend’s message, it’s probably not as bad as it seems and I work really hard at not borrowing trouble from the future and living our life on a day to day basis.
These things make the terrible and deeply rewarding job of care giving and learning from Marty better. These things make me better for Marty and that’s really a big deal to me.