Over the last three weeks I have had at least five discussions with friends who are watching family members slip into that strange world of here and not here. They are watching their loved ones begin to forget. They are watching the agitation and the fear that begins to settle in as this person realizes they are losing their identity. Their memories. Their story. And finally their ability to communicate.
I have been jotting notes on this blog for over eight years now. I began it as a place to think aloud a bit about our journey with my mom’s Dementia. We were well into that journey even eight years ago. Now, as Mom is farther and farther from her ability to communicate, there is not much to update. Things do not change as much day to day anymore.
I began this blog partly because of a quotation from Frederick Buechner that kept nagging at me:
“My story is important not because it is mine, God knows, but because if I tell it anything like right, the chances are you will recognize that in many ways it is also yours…it is precisely through these stories in all their particularity, as I have long believed and often said, that God makes himself known to each of us more powerfully and personally. If this is true, it means that to lose track of our stories is to be profoundly impoverished not only humanly but also spiritually.”
We need to share our stories. We need these touch points with one another, to know that we are not alone and to glean wisdom from those who are a little farther down the track than us. We need to hear that God has been present in others’ stories; it encourages us to watch for Him in our own.
I’ve encouraged those I know who are in the midst of this now to be patient. To remember that they do not have to use logic, and they do not have to win arguments. And we do have to repeat the answer a hundred times some days. My brothers and my Dad would be better at writing the advice. They have cared for Mom diligently, daily, these last years.
I am 1200 miles away, and as life has become busier here my travels home have become fewer. There is an acute awareness, however, of this missing element of my life. This void. There is a silliness to asking how Mom is when I call…she is the same as she was yesterday. As she was last month. As she was last year. But I still want to know. I still ask.
There were times when she changed weekly. There were times when she would call, and she would know who I was. She knew things were slipping, and there was fear in her voice, but she knew me. I found an old answering machine today, and knew that I had at least one recording of Mom still there. Her voice brought back so many memories…and that deep desire to have one more conversation.
So to those who are just starting out on this journey…it is a long one, so take a deep breath and give yourself some space. Recognize that there are so many going through the same journey.
Your loved one just might be mean in this season. They might lash out. They might be aggressive. Not always. But my guess is that there is a season in this where they know what is happening, and yet they don’t know where they are any more. Where there is a sense that things are familiar, but they can’t figure it out. And that has to be terrifying. So give them grace. But also have wisdom.
Now Mom doesn’t communicate. She doesn’t form sentences or ask questions. Sometimes she rambles a bit and you can tell there is something she is trying to say.
She still smiles though. And her eyes still twinkle.
So now, for me, 1200 miles away and keenly aware of the conversations I wish I could have with her, I have taken to something specific to keep her memory close.
I don’t leave the house without wearing something of hers. (And I also can never take a normal “selfie” because I feel ridiculous…but wanted to show the necklace!)
I’m reading from her childhood Bible some. And I drink from a coffee cup that came from her.
Necklaces, flannel shirts, coffee cups…they remind me of this strong woman I carry with me. I carry her wisdom and her wit (although hers was quicker than mine). I carry her love of books and pens. I carry her laughter.
My daughter carries her name.
If this is true, it means that to lose track of our stories is to be profoundly impoverished not only humanly but also spiritually.
Keep telling yourself the stories your loved ones can’t tell anymore. Write them down. Remember. Stretch that memory, and find something that helps you hold that person close…even if they are 1200 miles away. Stretch your own memory and think about your own story. Write it down.
If you live miles from home, keep asking how they are. Even if it doesn’t change.