I have always thought of myself as nurturing, a good mother, someone who goes the extra mile.
I never knew how vital those qualities would be for my son until he became paralyzed. His story is a long one, and one for another blog perhaps. The short version is that one October day when he was 14 years old, he woke up with a bad headache and ended up paralyzed and dependent on a ventilator to breathe. He is now 29 years old. No diagnosis was ever made. All we know is that his immune system attacked itself.
I am his primary caregiver. Through the years nurses and personal care attendants have come and gone, but I am the constant. When someone doesn’t show up, I pick up the slack. Even when the caregivers are with him, I help with the tasks that require two people such as lifting him, or his bowel and shower routine. There’s no downtime for me. I also have a business and work more than full time on very little sleep. I often ask myself how the heck I am still going but the answer is simple.
The reason I am still going is because my son needs me. Somehow, I can always find the energy to help him. He can’t help himself – he needs me. I am the constant.
The most important quality a caregiver can have is understanding the simple fact that the person you are caring for needs you. They don’t want to need you, but they do. I would never want my son to feel guilty for needing me, although I know sometimes he does. He feels bad when he has to call me in the night, or when he has to ask me for help. But I always reassure him and tell him not to feel bad, he has to call me, don’t NOT call me when he needs something.
He has many medical issues and sometimes it’s tough. I get tired, I get cranky, but I am always able to get up and go to him and help him. To me, that’s what caregiving is.
We’ve tried to hire personal care attendants but have not had much success. The pay isn’t great, and we end up with responses from people who don’t really care about caregiving. We end up with people who just need money and think it’s an easy job where they can sit around and talk and text on their cell phones all day.
This is difficult for me because I expect that everyone will care as much as I do for my son, and that they will have the same work ethic that I do. Sadly that’s not always the case. This results in his having many different people come and go, but I am his constant.
The best advice I could give to caregivers would be simply to care. Imagine yourself in the other person’s situation, be empathetic, go the extra mile.