It’s not like it came out of the blue. I knew something was wrong. It’s like when you know it’s raining, and you can hear the thunder, but you aren’t really worried that you’ll be hit by lightning.
And then you are.
There’s the old anecdote about how if a frog is put into a pot of boiling water, it will immediately recognize the danger and jump out. But if the frog is put into a pot of cold water that is slowly brought to a boil, it will be cooked to death. It’s a metaphor of the inability of people to be aware of a threat that arises gradually, rather than suddenly.
The doctors had been saying for months that he was too young to have any form of dementia. It was stress, it was depression, it was a B-12 deficiency. All the while, the water in the pot was heating up.
When he didn’t get any better, the insurance company finally agreed to pay for a pet scan. Once the results were in, a solemn group of doctors came in to discuss the results. If a solemn group of doctors come in to talk to you and your loved one, LEAVE. THE. ROOM. Trust me, whatever it is they have to say, you don’t want to hear it.
It was the diagnosis doctors told us two years ago they were certain my husband did not have. For two years, they were wrong. It should have felt like Hiroshima had hit. Only Hiroshima had been blowing our lives up in slow motion for months and months now. This was just the acknowledgement that the bomb, in fact, had gone off. There was no screaming or crying in the doctor’s office. It was all very civil. Very clinical. Very matter of fact.
I briefly tried to argue that there had to be another explanation, as if I could talk our way out of this and somehow convince the doctors to go back and find a different diagnosis. Cancer. Couldn’t it maybe just be a brain tumor? Funny how “just” a brain tumor would have been better news.
It wasn’t a brain tumor. It wasn’t cancer. It was dementia. In this case, early-onset Alzheimer’s. Not exactly common, but it happens, and it had happened to Tom. I asked about a cure. But I had already done the research. I knew. And they confirmed it. There was no cure. My husband’s brain was dying. His conditional was terminal. I asked if medication would make him better. No, it would not. It might slow the progression, but he would not get better. What about clinical trials? Tom’s didn’t seem to qualify. Somehow, he was already in the “moderate to late” stage.
The neurologist said I needed to make an appointment to bring my husband back to the group of doctors in six months.
That’s when Tom, the one at the epic-center of the slow-motion atomic Alzheimer’s bomb, finally had something to say.
Why?
Why did he have to come back in six months?
Before his brain decided all on its own to prematurely die, Tom had always asked the best questions of anyone I’ve ever met. And this one was pretty good. Why come back in six months? Just so the doctors could say, yep. Still got it. Come see us again in six months.
WHY DID WE HAVE TO COME BACK?
The doctors looked at each other. They seemed slightly embarrassed. They didn’t really have an answer at first as to why we had to make another appointment with them.
One doctor finally came up with this: Our family was going to need a team to face what was to come. And as a team, we needed to all be on the same page.
I agree my husband and I need a team. But as the captains of this team we get to decide who is on it and who is not on it. And as far as being on the same page with us, this is our book. We are the frogs, not them. And maybe we can’t control that the water is going to get hotter, but we can decide what page we are on in the process of dealing with it.
This is page one.