I never intended to write a book. I did it because I owe.
I refer to my experience with Alzheimer’s Disease and Jan as a journey, and not one that I want any other person to have. But they will. In the United States today, some 5-million people suffer from Alzheimer’s. By 2050, that number could more than triple. And every single one will need intensive, personal caregiving.
Put another way, the Alzheimer’s Association (www.alz.org) says that today one person is diagnosed with Alzheimer’s every 70 seconds. By 2050, that will be every 33 seconds.
There will be many, many people on my journey.
And the ones who have already passed this way are the ones I owe. They reached out, they explained, they shared strategies for helping Jan and they cried with me…yes, a lot of tears…when they saw that I was faltering. They knew about that because they had faltered a time or two. Some still do.
Now I am the one on the journey. And I know there are people back there, just now – today – starting at the beginning, who have no idea what is coming.
They do not know how they will lose the one they love but still look across a kitchen table and find the body physically intact, smiles and all. Only the dimming glow in the eyes will give away what is happening inside.
They do not know how they will reach the way stations of anger and grief and find that it doesn’t end, that the next day there is a new change, a new deterioration, new anger and grief. There is no such thing as closure because the mind of the person with The Disease will create detours, and the person will seem to spring back. And then, in an exercise of demonic cruelty, the mind slips away…again.
When Jan was diagnosed in 2005 at age 55, I read about The Disease and studied what could be done and knew the changes that were inevitable. But those were words. Being intellectually prepared turned out to be no preparation for what I was going to feel, endure, rail against and finally discover — that The Disease would continue outwitting me. It defeats me, still, to this day when she slips in some new way.
So I wrote a book. If you are the next person starting this journey, I offer this as only the way I did it. If it helps, then I have begun paying back what I owe to those who helped me.
If you know someone with Alzheimer’s, this is a way to see inside and understand what that person’s caregiver is facing, and perhaps that will help you understand.
I call Alzheimer’s “The Disease.” If you read the book, you will see why I came to think of it as a demon, a material thing, almost a person, because I needed that to understand my feelings about Alzheimer’s. I can summarize those feelings in one word.