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I understand that his care is difficult. Just because I don’t do it every day doesn’t mean I can’t understand it or haven’t experienced it firsthand. I also understand that he has a soul and that his soul is not related to his brain or at least that is my belief. I understand that when I listen to him compassionately without correcting what he has to say that he opens up to me. I understand that when I honestly listen to him, he knows it and I can see it in his eyes. I know that I did not have an emotional relationship with my father for the first 28 years of my life. I remember him being upset about that when I was in high school and then it felt beyond repair. We never spoke to each other about anything important. I never had a male role model every day guiding me to do something I loved and to understand how to love and how to be loved. How to listen and how to be listened to. Well, I’m starting to learn those things on my own. And most importantly I forgive him for not being there for me when I needed him. And because I forgive him, I’m able to love him. And because I love him, I desperately want to give him all I can give him. He’s alone and scared. He knows what state he’s in and it’s devastating. He is not an imbecile that shits all over the floor and pisses all over the counters and talks in nonsense. He is not a burden. He is a human being with a soul that God put in him.
Last year when the people at NYU said he’d decline significantly in the next 2 years, I guess it all hit me. I realized I didn’t have the relationship with him that I wanted. But I wasn’t going to let the disease prevent that from ever happening. And there was his 70th birthday party. Or any party we go to with him. People stare. They make faces. They are appalled. They are sad. They are confused. Their comfort zones are tested. They ask him memory questions as if it’s somehow going to just come back. Or that it’s going to reinforce it. His cognitive ability is gone, but he has emotions. And he can express emotions. He is living an ever present “now” moment. So whatever emotion he’s feeling now, he’s probably going to feel that the next now from now. And then the next one. And the next one. He needs to be led to emotionally enriching levels. And the only way that’s possible is connecting with him on his terms. Maybe this makes sense. Maybe it doesn’t. Maybe you do it. Maybe you don’t. My “Project” is the attempt of a 28-29 year old young man hitting his prime, making a shitload of money, realizing that money isn’t as important as the love and relationships he ought to have in his life, to start those connections with the person he’s most unable to connect with as a circumstance of a long-term degenerative disease that nobody understands because they don’t even understand the healthy organ it’s affecting. And he’s videotaping his experiences because he recognizes that he’s in the process of capturing a personally rewarding and spiritually fulfilling moment in his life that he hopes extends beyond the relationship he’s triaging before its too late. And he’s realizing that it’s never too late. The disease has allowed himself to put himself out to the father that he never thought cared about him or at least didn’t care enough. And now his father tells him he loves him. And he looks at him straight in the eye and through those eyes he says “thank you. I love you.” And that’s all the young man wants and because it’s working he wants to do what he can. But he’s trying to balance a ton of things in his life that he has found very difficult but feels like he’s getting himself on track to do it. It takes a lot of energy and a lot of work and a lot of sacrifice. And I’ve been mulling all these things over in my head for a year. I don’t know what to do. I try to open myself to God’s answer. And I’m struggling to do what’s best for my Dad, myself, my wife, my mom and sister, and my business partners and the progress of the disease happens so quickly I can’t stay up with it and I’m left to wonder what it is I’m supposed to do. But I know that the more footage of my experience and his experience and our experience that I can capture that and hopefully express it in a way that will ultimately relieve the burden of suffering this situation will affect other families as the Baby Boomers start hitting the Alzheimer’s ages. And hopefully in the process I can be at his side to help his soul find whatever peace that it needs.
If you want to make audio tapes or videotapes to add to this story, please feel free. If you think I need to understand how difficult he is to care for then I ought to share with you the tapes of how beautiful it is to spend time with him.
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From: Daughter
Sent: Wednesday, September 05, 2007 1:42 PM
To: Son; Mom
Subject: RE: Daddy
Not really sure what your project is, but I’m sure she’s offering the audio tapes so you can understand how hard he is to care for.