The other day my ‘friendversary’ with my sister Joan popped up in my Facebook memories. I scanned the photos and zoomed in on one. The picture is of me, Joan and our sister Carol, standing in Joan’s kitchen. In the background you can see Joan’s refrigerator. I zoomed in further and I can see a photo of me and Joan, prominently displayed among all the others there on her refrigerator. I could not stop crying.
For over a year now I’ve passively been sharing Alzheimer’s posts on Facebook. For longer than a year, I’ve avoided posting anything more personal, first, out of respect for Joan and later, because I felt it wasn’t my story to share. But recently I realized, this story is mine too. She is my sister, who loved me enough to keep me on her refrigerator. She called me Sissy, and I am almost certain she is the one who gave me the nickname of Nannygoat. She is my Joanie Mahoney.
The biggest regret I have is that I didn’t tell her more often how much she means to me. I didn’t tell her how much I look up to her and admire her – didn’t tell her she is the smartest one of us. I didn’t say “I love you” nearly often enough. I didn’t put her picture on my refrigerator – and it devastates me. I need to do better, we all do. We need to tell people what we want them to know. Don’t hold back on your feelings because your chances will eventually run out. I still tell her these things, and it still matters, but that part of me that realizes Joan no longer recognizes me is sad that I didn’t say and do these things while it was more tangible for both of us.
I’ve seen Joan in person, only once in the past year, not nearly enough. It seems nothing was or is enough and I know it never will be. I am struggling to come to terms with that.
It doesn’t matter that she doesn’t know me every time she sees me, because it isn’t about me. I’m so lucky that my sister-in-law, Mary Beth, visits Joan frequently. She often will Facetime me so I can see Joan too. Every so often there is a glimmer of recognition, but that doesn’t matter. The thing that matters is that Joan enjoys the visits. Even when she doesn’t participate in the conversation, she is listening. She knows we are there to see her. She laughs at our silliness and shows her silly side as well.
I’m sharing this now, after all this time, because our stories need to be shared. Dr. Gupta points out, “there are still more questions about the brain than answers. While we enjoy lower rates of cardiovascular disease and certain cancers than a generation ago, the numbers are going in the other direction when it comes to brain-related impairment”. We don’t have a cure for Alzheimer’s dementia, and we need to learn how to cope with it. It is projected that by 2060 the number of Americans with Alzheimer’s will climb from 6 million people to 15 million. That means there are millions of people who need to say the things they’ll regret not saying. There are millions of people who need to understand that if this isn’t your story now, it very likely could be.
When you love someone with Alzheimer’s you think about some things differently; like ‘making memories.’ We fail to recognize that memories are fleeting, whether they are ours or our loved ones’. My own memories don’t even belong to me, they belong to the universe.
Like most of the things I write, I always struggle with an ending. With this – I know the ending can’t be written. I’m still here wishing it was different and hoping for more of those magical moments when sisters connect. The past few months have been tough, with squeezing in a few family visits before omicron hit, a death in our family, a round of bronchitis and now our own covid infections. Winter will end and hopefully, with it, the long pandemic. Soon it will be March. Then I will see my sister.
