May 2006
My Brother's Keeper
By Rebeccah Rush

Last week I was in my room when I heard a loud thump from the other side of the apartment. Not sure where it was coming from, it took me a minute or two to find my brother Ben lying on the carpet in a contorted state. Aside from a small wound above the eye and probably a bruised ego, he was fine. When we finally got him to a sitting position, I asked "How did you fall?" His response, in a somewhat perturbed manner was "How the $*@# do you think I fell?", as if it wasn't obvious.

The term “caregiver” bothers me. It bothers me because it puts a clinical perspective on something that is in no way clinical. If I was hired to do this job, I would not mind the word so much. But that is not the case. When Ben moved in a little over three years ago, I had no idea what I was getting myself into. There is a possibility that had I known, I would not have let him move in. I am not his wife, girlfriend, mother, or a hired nurse. I am his sister. There are boundaries to our relationship that are more complex than that of a spouse. If I had known that I would be bathing my brother, I cannot say I would have been so open to the idea. But here we are, three years later, and seeing Ben naked is the least of my worries.

The hardest part of being someone's caregiver, at least for me and my brother, is not the physical duties. Helping Ben eat, dress or bathe is not difficult for me. Driving him on errands is simple. Even helping with his son John is not difficult, it is mostly fun and I feel lucky to have such a great kid in my life. All these things are time-consuming and do deter me from my job as producer of this movie, but they are manageable. It is important to note that I get a lot of help. First, there is my extraordinary husband Drew, who is willing and able to do whatever is necessary without complaint. There is our editor Tim, who helps Ben with lunch and has a penchant for moonlighting as a nanny. There are countless friends, neighbors and family members who are always willing to help out in a pinch or with a meal and never seem to mind that I ask. With as much help as I get, these physical things are manageable and at times surprisingly easy.

What is not always manageable, but probably the most important, is the mental part. This disease, like any terminal disease, is devastating. I can only imagine that when there is some course of treatment, any treatment, it gives a certain amount of purpose to the situation. But with ALS, there is no treatment to stop the progression of the disease. To the patient, to the family, to friends, this is devastating. To watch Ben's health wither away and not be able to do anything is downright toxic. ALS symptoms are severely affected by stress. So while we are trying to keep up with the day-to-day and keep Ben walking and talking, we are trying to do it with as much peace as possible. It's not easy. Like anyone, Ben has issues in his life - money, relationships, kids and just living day to day in this world. But on top of that, there is an insurmountable amount of stress from living with a neuro-degenerative disease that eats away at your body every day. Helping Ben manage these challenges is the hardest part of living with him.

From what I see, Ben has managed to enjoy his life more than a lot of healthy people I know. Of course he has his bad days when I think his temper will kill him right then and there. But for the most part, on a day-to-day basis, he loves his life. He is proud of his accomplishments and he strives to continue making a positive impact. He laughs a lot. And he plays a lot. I am pretty sure that in a strange way ALS has given him something that he will cherish. I know it has it for me. There are times when I try to imagine what Ben must feel like not to be able to scratch his nose, put on a sweater or swish water around in his mouth when brushing his teeth. It is impossible for me to know what this feels like and I watch it every day. I have come to appreciate, more than I ever thought possible, the ability to type, write a check, make a meal, blow glass or hold a child.

Ben is moving out this week. We have decided, for many reasons, that it is time for us to part residences. I am six months pregnant and my growing belly, soon to be a living child, is not allowing me to do the physical things I used to be able to do with ease. I owe it to my marriage to get at least a glimpse of privacy before this baby comes. Ben needs some independence from his overbearing and protective sister and I can let someone else worry all the time about him falling and cracking his head open or choking to death. He needs to be able to get what he wants, when he wants it, and someone else will allow him that to a much better degree than I am able to provide anymore. Now more than ever, Ben needs to focus on his health and a screaming baby won't help that much. I need more time to focus on fundraising and getting this movie out in the world. Like I said, there are many reasons that this is the right move for all of us. It is the end of an era, as Ben likes to say.

As much as I know it is good for everyone, it pains me to see him go. In the past three years, I have learned so much about my life, what is important to me, and how I want to live and love, on a daily basis. I am inspired regularly by my brother, by working on this movie and by my nephew who brings us all so much joy. I fear that when Ben leaves I will lose some of that knowledge. I am crying as I write this, perhaps because I worry about Ben and I am over-protective. Perhaps it is because I feel guilty that I am abandoning him to raise my own family. And perhaps it is simply because living with him and helping him has given me a bigger sense of purpose in life that I want to retain. When people say to me that not everyone would choose what I have chosen, that I have done more than many sisters would, I feel sorry for them because they are missing the point. I have not a moment of regret but I would give up everything I have gained for my brother to be healthy.See footage of caregivers interviewed for "Indestructible"


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