When my brother and I were growing up, we used to laugh when our mom would ask who wanted to help with whatever it was she was working on, and no one wanted to help. We both knew the words “Well, I’ll just do it myself!” were sure to follow. As she is a redhead, we liked to the comparison to the story of the little red hen. If you’ve forgotten, no one wanted to help her mill the wheat, or make the bread, but everyone wanted some of the finished product. As a kid, that comparison was funny. As a wife and mother doing it all, it’s not so much anymore.
For the now 14 years of Terry’s health problems, I have done it all myself. Except for his 46 day hospitalization in 2004, I’ve spent almost as many nights in the hospital with him as he’s been there. I make his appointments, accompany him to them, order and pick up his meds, fill his pill minder, handle all of his health insurance issues, empty puke buckets and urine bags, cook, clean, transport, encourage, remind, console, advocate for, fight with doctors on his behalf, and generally do everything he needs not listed. For much of that time period, I was working full-time, and raising our daughter, who was barely 8 when the health problems started. I knew I needed to be the one to take care of him so I wanted to be the one taking care of him. Who knew that would turn into me being the little red hen this time around?
While there were periods of time when he wasn’t doing well, and couldn’t drive or do anything around the house, for the most part he wanted to be as active as he could be. I’d invest a lot of time after a medical event, and back out of the time spent as time went on and he started getting stronger or better. That’s not happening this time. It’s been about three months since he came home from the hospital and his ventricular storm. He’s not getting better and he’s not getting stronger. And it’s discouraging to us both.
But the real problem is he is still having tremendous anxiety about the way he is feeling. If he feels his heart rate is different, or he’s feeling dizzy, I need to be here with him and for him to make sure he doesn’t get so wrapped up in how he’s feeling that he unknowingly lets it snowball until he does have a medical problem. That means I can’t be far from home. That means the things I’d like to do and the places I’d like to go are on hold. Still. That means the worse he feels, and the ability to get a break from it all are farther apart than ever before.
It’s hard to ask family who haven’t offered to help to do so. It’s even harder when you do ask and are ignored. And believe it or not, that’s happened. When you’ve done a lot to help someone and they turn their back, it’s hard not to feel dismissed. I keep reminding myself that I’m here because I want to be, and in the long run I will never regret the sacrifices made to be with him. Others may have some struggles with their conscience down the line…their choices; their consequences. Mine will be clear.
For now I guess I just have to dig in a little deeper and know I’m in it by myself for the long run. I’ll be the little red hen, and I’ll do it all myself. Just wish there was a tasty loaf of bread or something tangible waiting for me when this all over…but I know how it ends. That’s why we’re trying to avoid that.