I made a new friend today. I want to respect that her story is her own story, not mine. It’s important that this blog be a place to express my “thoughts from below” and not hers. She isn’t able to use a computer and follow a blog, so I certainly could get away with telling her story here. But I want to respect her and her story the way I hope others respect me when I’m in her shoes. So I’m going to work hard to express my thoughts and not pretend to know hers.
My new friend has early onset dementia. Every time I’ve encountered someone in the early stages of dementia, my experience is that there seems to be complete denial. This is not true for my new friend. She is aware. She is self-conscious. She is apologetic. She is not much older than I am. Because all of my past experiences were with people who denied the onset of dementia, who insisted that nothing was wrong, I have wondered if it would be possible for me to be self-aware as the changes come. After today I know that it is. And I caught a glimpse of how heart-breaking it is going to be.
People say, “As long as you are concerned that you are forgetting things, you don’t really have dementia.” After today I know that’s not true. I have wondered what it may be like to know my brain is changing, to be self-aware as the disease begins. Now I know. Well, I don’t know what it’s like inside my friend’s thoughts and feelings, but I got to see what it looks like from the outside. It’s painful.
I made a new friend today. I mean that. I didn’t visit this person out of a sense of duty or charity. I truly want to be her friend and for her to be my friend. I want to listen to her and learn from her, just as I speak with her and share with her. I want to know about her life, and I want to tell her about mine. I want to share fears, and hopes, and simply “to be” together. Friends have things in common. She and I have something in common: A disease that is affecting her now and that will affect me in years to come.
It’s been nine hours, so I don’t know if she even remembers my visit, but I will go back. I hope it’s not too late for her to build a new friendship that she can enjoy, at least in the moment. I want to hear her stories. I want to know what brings her joy. I want her to meet my children and my mother. I want her to know that she still matters not only to her long-time friends but also to someone just meeting her. I want to “do unto her” as I hope others will “do unto me” in years to come.”
I’ve met a lot of people with dementia. Today was different. I know it’s not all about me, that it isn’t really a friendship if I’m putting my own thoughts and feelings first. But there are so many thoughts and feelings swirling in my tired brain. It had to take courage for her to open her door and welcome me in. I’m so grateful that she did. I hope that she will open it to me again. I pray that I will discover ways to put her first and not grow obsessed with my own thoughts, feelings, or fears when we are together.
As I finish this post, I don’t really know what to say. Funny, several times today, my new friend stopped mid-sentence or mid-story. She would apologize as she stumbled and didn’t know what to say. I would tell her not to worry, that it didn’t matter. Yeah, I don’t quite know what my point is in this post. But I hope you don’t mind me opening this door and sharing with you like my new friend did with me today… Yeah, I don’t know what I’m trying to say, but thank you for listening.