Being a 24/7 caregiver means there’s someone who needs you 24/7. But I’m learning to accept that it’s just not possible.
Believe me, I tried. For the first few months I was unstoppable! Any time Joe needed me, I was there in an instant. It didn’t matter what I was doing, how tired I was, or how many other things needed to get done.
And then I couldn’t do it any more.
I started to slow down. I started to get sick all the time. I started to get angry. There used to be two of us in this marriage and it felt like now I was all alone, responsible for both of us. I felt bitter and trapped. That’s not the person I wanted to be. I don’t blame Joe for getting sick, but I also couldn’t cope with how much our lives had changed. I wasn’t angry at him, but I was angry and I was taking it out on him.
Something needed to change.
I can’t make him not sick. The doctors can’t, either. I needed to stop hoping for a miraculous recovery and accept that this is the situation I’m in and it’s not going to change. I can be wonder woman for a little while, but I can’t keep it up forever.
I was going to have to learn how to take care of both of us without burning the candle at both ends.
Joe is a grown man, the type of guy who never stopped to ask for directions or get help from anyone. He was a real independent, take charge kind of guy. I loved that about him. He took care of me all the time. I really leaned on him for a lot of things. At first, when he accepted that he needed to let me help him, I felt empowered. I finally got to return the love and care he gave to me all of those years. I could show how strong I really am. After a while, it got harder. I started to resent how much I was doing for him. While he leaned on me for a lot, I know he didn’t like it.
Step one for learning to do this long-term was pushing him to do more for himself. I can wait on him hand and foot when he’s having a particularly bad day, but not every day. There are certain things he can’t do for himself and that’s fine. But I realized I was babying him. There’s more that he can do than he’s doing. While he’s learned to let me do things for him and expects me to do things, he doesn’t like it any more than I do.
I started asking him to see if he can do things on his own. And he could. It was hard at first, but it was a fun challenge for us to do together. For a few months we discovered that he could do a little more for himself each day. Then we hit a plateau and it was frustrating, but that’s okay. His condition isn’t getting better, so now we know the maximum he can do on a good day and on a bad day and everything in-between.
As I pushed him to do more for himself, he also started to interrupt me less. Some things need to be done right then, it’s not optional. Other things can wait. He’d been interrupting me to ask for help for things that weren’t urgent and I was letting him.
Now we have a system that I check on him at regular intervals. He knows the longest amount of time he’ll have to wait before I’ll be there with him again and he can decide if he should call me in before that.
I can’t express how much this has improved our lives. He feels more independent. I feel more independent. And I can finally get things done. I had no idea how much trying to juggle a dozen tasks at once with constant interruptions was scrambling my brain!
Now some days I can do the stuff that needs to get done, from start to finish. When I hear him call for me I know it’s because it’s important.
I feel like I have my life back.
At first I felt like I was really letting Joe down by saying no to him. I didn’t even actually say ‘no’ and I still felt so guilty! But then I saw how happy it made him to get back to being the sort of guy who didn’t need someone else’s help all the time. We’re both so much happier now.
There are still bad days. It’s still exhausting. But now I know I can keep doing this. I could never stop being Joe’s caregiver — now I know we can keep this up, til death do us part.