Your Story

Hey Mom, I need to talk to you. The other day I ran into a friend of mine and she made a point to tell me that the words I write, in these blog posts, really mean something to people. That they touch the right people. She is suffering, too, Mom – her own mom also has Alzheimer’s. She teared up when she told me that and I was humbled, that my words could so affect someone else. I didn’t know how to respond – I’m not great at expressing my feelings out loud.

But it moved me, all the same. I’ve written these blog posts for myself really, to let out my emotions and grief. But, Mom, maybe I could do more. Maybe I could tell the WHOLE story. The story of you. Your story, your fight, your memories. I could put it all down on paper and maybe someone would read it. I’ve long thought about this, and have said to close friends and family that I intend to do it. Yet something has always stopped me. At first I thought it was my own grief, I find it hard to write when I’m mired down in depression. But I know it is something more. It is your dignity that stops me. This is your story after all, not mine.

You would hate it, Mom, what I want to write. You would be embarrassed and upset, and angry. You did not want this to happen to you. You made us all keep it a secret for a very long time. When you could no longer tell me how you felt I took it upon myself to start telling the story in these posts. I did it for me. I did it so that others would understand. So that maybe someone else wouldn’t feel so alone and discouraged. So, you see, I have already betrayed you.

I want to tell the gritty, dirty, terrible details. I want to start at the beginning and tell the truth of how this disease slowly steals your mind, your memories, your abilities and your life. I want to tell how it affects your family, how Dad couldn’t stand your pain and how I wanted so bad to advocate for you every step of the way. How I wanted to be sure I never let you down, and how I both succeeded and failed. I want to tell about your feelings, and my feelings, your grief and my own, your fear and mine. I want to tell your history and all the skeletons in the closet.

What I need, Mom, is your blessing. I need to feel that you are ok with it. That maybe you would understand, and want to help others, too. When you were first diagnosed I could find no books, no articles, no anything that really helped me understand not only what was happening at the time, but what would happen in the future. A few personal stories in books, yes, but nothing that went in depth, nothing that shared the deep, agonizing loss of both of us. Nothing that shared the mortification of losing your abilities such as going to the bathroom, knowing where the toilet even was, or the trash can, or your bedroom. The effects of sundowning, and the terrible terrible guilt over leaving you that first day in the memory care facility.

Through it all we have never lost each other, although I myself feel horribly lost from time to time. When I go to see you and lay my head on your shoulder I can feel you with me, truly with me. That physical connection has never been lost, that emotional connection still runs strong. You might have forgotten who exactly I am but I know you will not forget that I am important to you. I don’t know exactly who I’ll be when you pass, the pain that will be etched on my heart when I can no longer feel you will be very hard to bear. I guess my point, Mom, is that I want to tell your story so that you and our story will never be forgotten. So that it might help others feel not so discouraged in their journey with Alzheimer’s. And because your story matters.

I suppose I will have to go on without your blessing and hope that you will forgive me. Someone has to tell this story. I guess that someone must be me.

I am a strong woman because a strong woman raised me.