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 would I be if I was not providing care to Lynn?
When you are a caregiver, your entire life is wrapped around the person for whom you are caring. You decide what time you have to get up in the morning based on what you have to do for your loved one. Here’s how today went for example. I wanted to attend a meeting today, in person, at work. In order 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 I had to 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 in hot curlers. I didn’t apply make up 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 was able to sit through the entire meeting without being called away. I was actually 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 as I was leaving Walmart to ask when I could get home. 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, what I need to care for him, preparing to care for him, cleaning up afterwards, and planning ahead. Whatever a caregiver does, he or she has to consider the impact on the one being 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 that 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 I was caring for two young children on my own. 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 though 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 it’s what is best for him but it doesn’t mean that there aren’t times that I want to just escape. I would love a day off –a day that I’m not rushing to get what I need done; a day to just relax and be away but in order to get that someone else has to be here and everyone else has their lives to live as well. 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 really great family and friends who are here to help on occasion so I’m very fortunate. But I admit, that sometimes I would like to just get away and be me for a while…whoever that is.