I am reading a book that a dear friend loaned me. It is called I’ll Be Seeing You by Deane Johnson. The sub-title is “a wife’s journey with her husband’s Alzheimer’s.” Kim loaned me this book a month or so ago and I have carefully moved it around my house. I hate the topic so I was not sure it was something I wanted to nestle down with and read. But then after the third football game, I picked it up and started reading. Before I knew it, I was on page 90 and I my eyes were filled with tears as I took in each page.
At first, I did not realize I had tears on my face as I read this true story. I felt like I was reading the story of my mom and dad. I felt like I was peering into someone’s private life. This book was hitting a little too close to home. However, I felt compelled to keep reading even though I am pretty sure that I know how it ends.
Deane makes so many wonderful yet tearful statements in this book. For example, she says that having Alzheimer’s is like saying a slow good-bye. Ok . . . If that sentence alone does not make you tear up then you have no soul! This statement about saying a long slow good-bye is so very true. I can still see so much of my old Dad in my current Dad but I miss some of the parts that we have already said good-bye to.
I think saying good-bye is not always a difficult task. I have said good-bye to college students as we drop them off at college. This type of good-bye is bitter-sweet. I am saying good-bye to child that will never really be under my roof again as a child, yet I know that it is time for them to spread their wings. I have said good-bye to dear friends that have moved away but I know that I will always be able to pick up the phone and reach them. I have some friends that have lived outside of Birmingham for decades but we know we can pick up right where we left off and nothing really changes.
But a long slow good-bye is heartbreaking. I have said good-bye to the handyman that my dad once was. I have said good-bye to the financial wizard, the problem solver and the head of the family. Some of these good-byes happened years ago simply because of an aging parent and those good-byes are part of life. But the good-byes that go with dementia or Alzheimer’s are the worst.
Deane Johnson’s book is written as short journal entries so you can see the progression of her husband, Joe’s Alzheimer’s. She is constantly writing that “Joe has Alzheimer’s disease, but that is not who he is.” YES! My dad has dementia but that is not who he is. It is important to remember that the man my dad once was is still in there. We may be saying good-bye to some of the parts that make my dad my dad. But he is still in there.
Deane comments several times that Alzheimer’s is a lonely disease. Like my mom, she is the care giver and although Joe was probably once the head of the household, she finds herself alone making the decisions that they once made together.
Alzheimer’s is also a lonely disease because most people do not know how to act around their friends that are now not the person they once were. You cannot catch Alzheimer’s! There is no reason to keep your distance. Afterall, the caregiver needs their friends more than ever now! Not only does my dad have dementia but we moved my parents out of their house so that their surroundings would shrink and their would be less for my mom to worry about since she now has to worry about my dad. So what does this mean? It means that the friends that were once dropping by because they were in the neighborhood, are no long in the neighborhood!
You have to make more of an effort to go by and visit a person in a retirement community. But it is worth the effort. Make time for your friends that have relocated. Make time for the person with dementia and make time for the caregiver. Don’t say another long slow good-bye. Instead of good-bye say I am here! Be that friend that picks up the phone and checks in every couple of days. Be that friend that reminisces about the times that my dad still remembers.
My dad has dementia but it is not who he is.
Tell the caregiver that you will see them soon, instead of saying a long slow good-bye.
*** For more information on how to talk to a person with Alzheimer’s reach out to your local Alzheimer’s chapter and ask for a copy of the YELLOW SHEET. This will give you all the Do’s and Don’ts for talking to a person with Alzheimer’s. You can refer back to my earlier blog post for some of this information or contact me through the comments and I will do my best to get you the information that you need. ***