Life Altering Event

Did you know that each year over 26 million Americans care for an adult family member who is chronically ill or disabled? For the most part, caregivers never want to be a caregiver.  It is a non-paying, often thankless job. This is an anonymous poem that to me, as Annie’s caregiver, sums up a caregiver’s life, once put in this role (author unknown).

You put your own life on hold
You give and give all you can
Until you are given out
You get tired and discouraged,
Sometimes angry and grief-filled,
but yet you try your best
and to despair do not yield.

As stroke survivor Annie’s caregiver, I plan to use this corner to communicate tips for being a caregiver that are practical, authentic, helpful, optimistic, and share the humorous side. You get a different person back from the hospital. The elasticity of the brain will let the old and new personality develop but you have to be patient. I am not a patient person. I think I was a good coach for Annie. I had to get our lives back to a level of “normal” and go back to work. The financial side of these events is devastating. She responded well – with some bumps – and is once again running he house, getting back to work and managing on her own. It is beautiful to see. When you are “deep in” the process it is not so beautiful – but you have to remember they are doing the best they can.

And there can be a lot of joy. As you read my first hours keep in mind that Annie was 48 and in excellent health. She ran, weight trained and treated her body with respect. The last thing on my mind ever was that she would fall victim to an injury of this nature. 48 hours later the last thought in my mind was how long it would take for the brain to “balance” again after an attack like this. The term stroke is a bucket. It covers every level of brain attack. Annie had a 10 on a scale of 10. If it weren’t for her brother John knowing what to do this column wouldn’t be, and neither would she. Radical intervention saved Annie two days after the event.

Here is what happened almost exactly five years ago:

I knew it was a stroke. I knew it the minute I turned on the light. I just didn’t know why.  Within seconds, truly I’d dialed 911. As I spoke I could hear the sirens in the distance. Amazing people. Firemen first. Annie was half naked on the floor. She had on a pair of my boxer shorts. Her left side was flailing as the tissue was realizing the blood flow had stopped. She was talking. The firemen covered her out of their respect. The EMT guys and gals crashed through. Noise. Stretchers crashing in. Equipment being open Action. ed. Blood drawn, EKG’s (I think) hooked up. Action, action, action. And Annie there on the floor flailing. A sheriff grabbed me and pulled me back so the EMT’s could do their work. He was awesome. I was in control of my emotions but barely. I knew we were in real trouble.

And then they were gone.

The sheriff stayed with me while I packed a few things. I got dressed. He made sure I was in control and then he took off. I was alone. I called my brother, Tom.

I was hopeful as I got into Annie’s god-awful Scion XB. It was like climbing into a joke in the most serious moment in my life. Bright yellow. Mockingly upbeat. I drove to the hospital. Annie was getting a CT scan as I arrived.

Back to action.

Tom was on his way. I knew not to try and stop him. He wouldn’t. I wouldn’t have either. Dr. John was calling. We were waiting on the only neurologist who worked nights in Austin. A bad time and place for strokes, Austin simply had nothing. I learned a lot about this later but at the time it just seemed like bad theatre. They couldn’t get an accurate CT scan. Annie was flailing too much. They didn’t want to give her the tissue plasminogen activator (TPA), as it would cause her to bleed out. We were telling them to take the chance. Time was blazing by and running out.

I’m in t-shirt, shorts and flip-flops. It is freezing in the ER. I am pacing a few steps, looking in on Annie and talking on the phone. Focus. Fix Annie, go home. I had no idea that the rest of my life would now be so different from expectation. If anyone had told me I would have said “no way”. Within hours I knew it was a mess. Then I knew it would be different. My parents were coming. Annie might not survive the night. Everyone was mobilizing. Tom did it.

When do you know you’re toast? When do you know that nothing will ever be the same? When do you know that everything you’ve held to be important suddenly wasn’t? I knew it in 48 hours. I even knew I’d taken on, for the next few years, a purpose driven life. So much for the happy dilettante.

Did the next few days define me? Some say so. I was on my game, decisive, cool in the crisis and handling it all. I’m really good under pressure. Always have been. Oh yeah, did I melt? You bet. We had a chair in the hall. They were apparently getting rid of furniture and it was stacked. There was a chair sitting hidden where we could let it out. It was outside the ICU and away from the gathering camp in the waiting room. Nappy looking old thing. Rule one – Annie cannot see you cry. If you felt it coming on, get out. We dragged a few out when they cracked. Here’s the chair, sit down, let it go. I used that chair several times a day for the whole time Annie was in the intensive care unit. So did Tom. I don’t know all that used “the chair” but we were glad it was there.

My beautiful Annie with her brain spilling out of her head. Half her head shaved. Half her face limp. Machines attached. Pumping air. She’s on Diprovan. “Milk of amnesia” the nurses called it. Surgical patients get it so they forget the process. I didn’t get any. I’ll never forget. She won’t make it through the night. Prepare yourself. Yes she will, she’s tougher than you can imagine. She not through torturing me yet – kidding. She’ll never get out of that bed. Yes she will. You watch.

I could tell myself this stuff because I believed it.

I am not a religious person. I am a spiritual person but organized religion wasn’t for me. Ever. Of course many would say organized anything wasn’t for me unless it made money. But I am very spiritual. I believe we are all connected by something. It flows through us. It makes us human. I did experience something that morning of May 19. It was so powerful it jolted me upright. I knew what it was, the phone reports were pouring in. Everyone was getting more and more friends to pray for or just think positive thoughts about Annie. I experienced the power of a thousand people thinking of Annie at the same time. I could not imagine that much energy. It flowed through me. It saved me. I believe it saved Annie. We were going to need a lot of this in the next seven months.