When Parents Get Old

When I was growing up I thought my parents were going to live forever, as every child does. My parents did everything for my sister, brother and I. Like any set of parents, they cared for us when we were sick, took us on family trips, and made sure we did our homework. Since I had cerebral palsy, I needed more attention than my other siblings. This is true, from my knowledge, for every child with a disability.

As I grew into adulthood, and although I was becoming more independent by getting my own place, I still relied on my parents for a lot of things. Well, one thing I sometimes needed help with had nothing to do with my disability. Okay, I want a show of hands here. How many parents out there have had their children ask for money? Now I am older and somewhat wiser, I know how to manage my money. Getting back to the point, although I did have aides when I moved on my own, there were many times I needed my parents to come take care of me when the aide went on vacation or just didn't come. My mom didn't like getting a call at 7 in the morning letting her know nobody showed, but of course, she came right over.

Since my dad was still working at the time, it was my mom that commonly came in an emergency situation. For example, I had to go to the bathroom in the middle of the day, or something happened to my wheelchair or communication device. Then a funny thing happened, for some reason, that I don't remember, my mom was looking for a job and at the very same time I was looking for an evening aide. So I asked her if she wanted to work for me and she said yes. For the first couple months we butted heads because for about 7 years I got to tell my aides to do things my way, but now my mom wanted to do things her way. We came to agreement on a lot of stuff and for about a year everything was going great. Then my mom had a heart attack. I was really upset and of course she didn't come back to work for me again. I will get into this in a minute or so, but her heart attack wasn't even the tip of the iceberg of her health problems.

So now I couldn't really call my mom if I needed help unless it was an absolute emergency. A few years passed and I had aides come and go, but now I couldn't rely on my mom to completely fill in the gaps like she used to when I was between aides. Now I had to be even more independent, in that I needed to make sure I used the bathroom before my aide left and everything was setup so I could work. Once I was getting used to things, suddenly I had to let my evening aide go for reasons I'm not going into now, but I will say I really had no choice. So I thought I was going to be stuck. Well, oddly enough, once again, my dad at that time was looking for a part time job. Can anybody guess what happened next? My dad came to work for me. I have to admit he was one of the best aides I had. He had a schedule for cleaning, working in my garden, and helping me to pay my bills. He worked for me for about four years until my roommate and I decided to move to the country about an hour away.

As you can see, although I had become as independent as I possibly could, I still relied on my parents. But the past five years haven’t been good for my parents, especially for my mom. My mom has been living with diabetes for over 20 years and the last seven years it has finally taking its toll on her. I have seen her from being able to walk to being confined to a wheelchair. Seeing her going on dialysis. Going to the hospital, thinking she could die. Finally, I can’t talk to her on the telephone like I used to because she gets out of breath when she talks. This really has been an intense experience for me because she has been my best friend all my life.

My dad also has been a friend to me and we still do a lot of things together. Two of our favorite things are going to baseball and hockey games. We still go today. But he can't transfer me to and from my wheelchair anymore, because I am just too heavy for him. Seriously, he is going to be 70, and he just can't do it. Now I have to rely on my sister and her husband, my nephews, my aides, and of course my roommate. This is a huge change for me because I have to ask different people for help. However, I realize that is what I have to do, because I know my parents aren't going to live forever. My parents are relieved that I do have such of a great support system in place.

Unfortunately I think I am an exception, because I have seen many people with disabilities having no plan in place once their parents become disabled themselves or even die. This is now the reality for me. Although I am upset about it, I know I have to figure out how to live without the help of my parents. I have a lot to say about this and I’d like to continue the discussion at PEC 2011.