Have you ever wondered whose life it is you are living? Sometimes, I wonder if I exist anymore. Some days it seems that I only exist to be Lynn’s assistant. I do not have a life of my own anymore. Sometimes I try to have one, but when I do, I just become frustrated with trying, so I try not to try. I also wonder who I would be if I was not providing care to Lynn.
When you are a caregiver, your entire life is wrapped around the person you are caring for. You decide what time you must get up in the morning based on what you must do for your loved one. Here’s how today went, for example. I wanted to attend a meeting today, in person, at work. To do that, I had to make sure I had someone who could come in to stay with Lynn. I had to plan for what he would need while I was away and calculate how long I would be gone, what else I might be able to fit in while I was away, and what he would need while I was away. I set my clock to get up two hours before I had to leave. I got up and put him to bed while I showered (he sits up to sleep at night so he can peddle if he gets stiff). Putting him to bed takes about 20 minutes. I showered, blow-dried my hair, and put it in hot curlers. I didn’t apply makeup or put on my clothes because I knew they would get messed up as I performed his morning care. I got his medicine ready and part of his breakfast and went to get him up. I got him dressed, and brought him into the kitchen to take his medicine while I ate breakfast, then I took him to the bathroom, catheterized him, redressed him for being up all day, brought him back to the kitchen, fixed his breakfast. He fed himself while I brushed my teeth and applied makeup. Meanwhile, he kept calling me to help with things he was doing. I was supposed to leave at 10 and did so finally at 10:15. Not bad; I’m often later.
Today, I could sit through the entire meeting without being called away. I was able to assume my “worker” role and learn something new. I was able to talk about something other than MS and to do something that did not involve caring for Lynn for an entire 1 1/2 hours. It was refreshing. Then I left to go home.
On my way home, I had to stop at Walmart to get some things we needed, go to Krogers to get his medicine, look for a movie he wanted to watch at Foodlion and make two other stops. He called me to ask when I could get home as I was leaving Walmart. Knowing that meant he needed something as soon as I could get home, I skipped a few planned things and headed home. When I got home, I resumed caring for him for the next two hours and then put him to bed. Then I resumed working till he woke up. It’s always a balance between what he needs and what I need to care for him, preparing to care for him, cleaning up afterward, and planning ahead. Whatever a caregiver does, he or she must consider the impact on the one cared for. No decision is made in isolation, and whatever you might want to do, those plans are contingent upon the other one’s needs.
My office party is next Thursday. I’m hoping to go, but I know I can’t be counted on to be there. If I can’t find a sitter or if he’s sick, I can’t go. His needs have to come first, just like caring for a child. I often feel like a single Mom again because it’s the same now as when caring for two young children alone. Usually, at my age, you’re able to start living your own life again, but not so if you’re a caregiver. Your life is not your own. Your life is lived through the life of your partner or “care-ee,” and that’s hard to adjust to at times.
I have chosen to give up my life to care for my husband. It’s what I want to do and what is best for him, but it doesn’t mean that there aren’t times that I want to escape. I would love a day off a day that I’m not rushing to get what I need to be done, a day to relax and be away, but to get that, someone else has to be here, and everyone else has their lives to live. I have to ask for help so often that to ask for just a day off seems rather selfish; I already ask a lot from them. I have a lot of great family and friends who are here to help occasionally, so I’m very fortunate. But I admit that sometimes I would like to get away and be me for a while…whoever that is.
