This is the one word that rules my life; responsibility. I feel it so much every single day. I am the responsible one. Well, let’s face it, for those that know me I’m not THAT responsible but when it comes to this family, I’m the one responsible for the rest. It’s a lot of pressure being responsible for other living beings. Being a parent is hard enough. You are responsible for this little, tiny being whose entire life depends upon you. Add caregiving to that and it creates a weight that many cannot bear. There have been days when my husband’s life hung in the balance and I had to make decisions for his care. The weight of those decisions was incredibly hard to take. Although, at the time, there really was only one decision and that was to do whatever it took to keep my husband alive.
I was the one who signed the papers. I was the one who said okay. I was the one who chose the rehab facility (well, not really but I said yes…). I was the one who moved our family of three, with my mom, to Atlanta for three months. I paid the bills. I talked to the doctors. I was in charge of the quad’s care. During that entire time, I questioned almost every single decision. I just wanted to do what was best for my husband. I wanted to do what was right. He wasn’t in any condition to help me make the decisions and I had to make them on my own. It was a very difficult time for me… I felt very alone. We had been married just over two years and had known each other for almost 8 years but we had never had a discussion about what we’d do during a time like that… never. In your 20s, you think you are invincible. Life is stretched out before you and there is plenty of time to have those important discussions. We were more concerned with having fun and living our life and then that changed. I was left to deal with the fall out by myself as many spouses are in situations like that.
Thankfully, the quad got better and was able to make decisions for himself and can still make those decisions. I have the ability to sign for him which freaks him out but it’s a necessary evil since he cannot use his hands and arms.
Even know I feel an incredible amount of responsibility for my family. Since the quad cannot do anything around the house, inside or out, I feel like I must. And I feel like I must do it perfectly. Our house has to be clean, all the time. Our yard has to look great, all the time. We have to always have clean clothes and eat good food and be on time for work and school. You know what? It’s exhausting. At night, after the quad and the kid are in bed, I pace the house trying to go over everything I need to do in my head. I make sure the coffee is ready to go. Bags are packed. Dishes are clean. Laundry is folded. Doors are locked. I don’t stop thinking or moving. ever. At the end of every day, I’m exhausted and I literally fall into bed and immediately fall asleep, only to get up in the morning and do it all over again.
Some nights though, I lie awake and I worry. I worry about silly things… like what would I do if the house caught on fire? Who would I save? What if someone broke into our house? What would I do? I’ve created plans in my head… no joke.
Sometimes I think to myself, how will I do this for the rest of my life? The thought makes me have a panic attack. It does. My chest gets tight. I have a hard time breathing. I want to cry but cannot. I want to run but am frozen. I cannot think about the future but it looms in front of me. It terrifies me. So I do not think about it.
This level of responsibility and worry is so much to bear. Caregivers have so much to bear.