The Story in a Picture
"A picture is worth a thousand words."
I've always loved pictures. I remember my Mamaw had a large tin full of pictures. When I was a kid and would go to visit, I would pull that big tin out and rifle through pictures asking her "Who is this?" "When was that taken?" "Tell me the story about this one." It was one of my favorite things to do during my visits. Pictures are attached to stories, stories are attached to people, and pictures have always been a way for me to connect with the people in those stories.
But pictures are funny things. Without a teller, a picture doesn't share all of the story. It shows only a glimpse of reality-only one moment in time. Connecting only a few of the dots of the story, one may see a different reality than another while looking at the same picture. One thing is for sure, pictures alone don't tell the whole story. A picture of a person who is living with Alzheimer's and other forms of dementia leaves out a whole piece of reality.
Here is what you see and the story behind it. This is a picture of my dad getting ready to eat his apple pie and ice cream. He is dressed in one of his favorite shirts with a cap on his head. He is neat and clean and looking great. My family and I were visiting to celebrate his 87th birthday. I had made him a happy birthday apple pie (as per tradition). He had just eaten a big dinner and was ready to enjoy his pie. He loved dessert! He was smiling as we sang the Happy Birthday song. He was pleased to have us visit and enjoyed telling us his stories. This picture brings back a good memory of a fun moment in time. What you see is reality.
Here is what you don't see. You don't see the struggle he had earlier in the day to get dressed for our visit. You don't see the confusion on his face as he couldn't quite remember how this favorite shirt goes on over his arms. You don't see the frustration on his brow as he does his best to follow mom's cues as she helps him put on his socks and shoes, because he doesn't remember quite how to put them on himself. You don't see him trying to understand mom saying, "Foot up. It's ok; try again. Foot up.. not down...up.", and you don't see the smile on his face when she cheers, "Yay! now you've got it."
You don't see him wandering around, not remembering how to get to his bedroom to take a nap before our visit.
You don't see my dad, once a master storyteller, trailing off in the middle of a story he's told me a thousand times, because he can't remember the rest of it. You don't see my dad, who was once a master of words, forgetting the words he was trying to say in a conversation. You don't see my reaction when he has forgotten who I am, and is talking to me as though I am my niece, then one of my other sisters, and then me again. You don't see what Alzheimer's and Lewy body dementia have stolen from him, but what you don't see is also reality.
If we refuse to see the challenges these diseases cause, we miss the whole picture. The person living with these diseases can't share a whole part of their reality, which leads to a lonely life. We tend to shy away from conversation, because we don't want to believe that this person we know is living with a disease that is slowly causing their brain to die. And perhaps sometimes when we avoid it or fluff it off as "well, they are getting older" or "they just can't hear me", we can almost convince ourselves that there is no disease, that what we see is just what happens when you get old. But it isn't. It is a disease. And when we ignore the disease, we miss out on a chance to embrace the whole person.
Both what we see and what we don't see in the picture are reality. If we miss one, we miss the story, and while the story has tragic moments, it can also have moments of beauty. Those who are living with dementia face confusion and frustration and loss everyday. But one of the most difficult things they face is loneliness. If we can understand more about the disease, we can ease frustration and loneliness. If we see both the difficulties and moments of joy, we can live a fuller life with those who are living with these diseases.
Alzheimer's and other forms of dementia make life challenging. They are heartbreaking diseases, but they can still include moments of clarity and joy. There are opportunities to grow as we learn how to best relate to a person who is experiencing brain failure. There are ways we can ease the confusion and experience moments of laughter together. And while we won't change the outcome of these terminal diseases, every moment counts. Every moment spent in laughter, is one less spent in fear and confusion. Every moment spent connecting, is one less spent in loneliness.
Pictures are indeed worth a thousand words. A teller will share the whole story. I want to be a teller of the whole story, just as my Mamaw was for me when I would ask about her pictures. I pray I will see the whole story of those I meet who are living with any form of dementia. I pray we all will. May we look not only at the smiles, but also at the frustration, so we can say, "It's ok. We will do this together." May we enter into their reality and ease their loneliness. May we look not only at the devastation these diseases cause, but also at the moments of joy. May we embrace those moments of laughter right in the middle of those difficult days. And of course, may we always have pie to share.
