We are learning how to live all over again. How to work together, how to interact with each other, how to be a couple. Our old, comfortable ways of working and relating to each other have been erased. To use a horrible but appropriate cliche, it’s a whole new ball game.

Two weeks ago, Jack was diagnosed with Frontotemporal Dementia, Semantic Variant. In layman’s terms, this means he has difficulty with communicating, understanding words, and challenges with basic skills like running the microwave and handling money. He also has lost most of his short term memory, which means every day is brand new for him. This diagnosis, welcome as it is after four months of uncertainty, has irrevocably changed our lives. I  am tempted to grieve for the loss, but there hasn’t been time.

This new normal means that every day is an adventure. It means that I can no longer plan out exactly how the day is going to go, because i don’t know which husband I will encounter when we wake up. Will it be the husband who is reasonably well oriented, who can focus and understand, or will it be the “lost” husband, who is anxious and unable to comprehend much of anything? I don’t know which one I’ll have  until his eyes are open and he’s up and moving around. Which means I have to be able to shift gears with no warning.

I would be lying if I said I wasn’t scared. This condition, like most of the dementias, is poorly understood. From a medical point of view, there is no treatment and no cure, just a slow downhill progression that ends with 24 hour care and death. The progression can be slowed but not stopped. When I encounter these grim realities, I want to curl up in a corner and cry. This is not the way I envisioned our future, having to watch him disappear in front of me. This wasn’t supposed to happen, especially now, when things are going so well.

I have my dark moments. But then I remember that the doctors may predict, but only God can decide. I remember that “No cure.” and “There’s nothing we can do.” don’t mean that there’s nothing WE can do. WE can do a lot to make this adventure into a daily blessing, rather than being frozen in fear at the implications. It means being open and willing to see what this adventure has to teach us  instead of cowering in the corner with our eyes shut. It’s a daily choice, not always easily made. But the first step is the willingness to make it.