Wherein the "Real" Mr. J Makes an Appearance and We Meet Dr. Good Enough

Photo by Roy K on Unsplash

AUTHOR’S NOTE: I wrote this piece back in May, but I’ve been dealing with . . . things so it is just being published now.

A New Mr. J?

Mr. J is not acting himself. Not acting himself at all. Well, not the most recent self. In fact, he is acting a lot like the old Mr. J. Yesterday, I got some upsetting news about a work task I have to do which involves traveling across the world on an airline I have no status on (first world problem, I know). He asked me, several times, “Are you okay?” and “Is something wrong?” and “You just don’t seem like yourself.” There has been an absence of this sort of thoughtfulness over the last two plus years. Mr. J is also napping less, but it is functioning better. Today, as we drove to Costco he seemed “completely normal.” It's so weird. As I was making dinner, he came into the kitchen and pointed to a bag of shredded parmesan cheese. “I didn’t know we had this,” he said. “Yeah,” I replied. “It was in the freezer.” “If I’d known,” he continued, “I would have made my alfredo sauce when you didn’t feel like cooking.” These incidents show he is paying attention on a level he has not been on in several years. He came up behind me yesterday and hugged me at the sink. So. Weird.

The New Guy

Mr. J and I went to another appointment with “the new guy.” Not Dr. Dickhead. Not the world renowned medical center’s double boarded specialist. The guy our insurance will cover. I’m still not sure about him. He ran through a series of questions for me, like Mr. J wasn’t even there. (Later we laughed about it as we almost simultaneously joked about how now he knew what it was like to be a woman.) What did I observe? What was my perception? Is he violating standard norms and boundaries? Is he putting things in his mouth that aren’t food (read: rocks, glass, and the like). I was relieved to report “no” to all his questions. He reviewed blood tests that have eliminated Alzheimer's. Differential diagnosis remains degenerative brain disease. Mr. J is apparently taking the slow boat to dementia. He’s not “progressing as expected. “ But the diagnosis remains the same.

“He’s getting better,” I report. The new guy is unperturbed. “It’s still the best explanation we have.”

Another Run at Turning Over a New Leaf

I have been thinking about this for several months. I have decided I am tired of being sad and hurting about the fact that he is going to die – something that has been nearly all consuming for the past two and a half years. And it’s fucking exhausting. Instead, I am focusing on the moments we have. (I know, I know. I’ve said that before. Hey! This whole thing is a process not an event.) Today, Mr. J is still funny. Today he is not eating rocks. Today he still knows he loves me. It’s taken me more than a minute to figure that out. I’m betting on having to figure that out again and again.

Dr. Good Enough

Another thing I have figured out is that I don’t need a definitive answer right now (which is a good thing because a definitive answer to Mr. J’s differential diagnosis can only be had post mortem). I have renamed “the new guy” “Dr. Good Enough.” For now. Dr. Good Enough explained to us there is no medication, treatment, or cure (which we already knew). But he reminded us (because I swear, at some point I did know this) that the two things we can control are Mr. J’s environment and his sense of well-being. “Come back in six months,” he said. Good enough. Whether Mr. J does or does not have the differential diagnosis assigned to him is, I have decided, of no consequence to us at this time. We can focus on his environment and his well-being, which, let’s be honest, can only enhance my environment and well-being as well. Good enough.

On My Own Journey

We also saw Mr. J’s occupational therapist, M, this week. She is lovely. At some point, I was saying, “I was fine carrying the entire load when Mr. J was a zombie” (a reference to those awful early months, before the sleep study and the CPAP that began the upward climb). “But now I find it frustrating, when he is perfectly capable of making and keeping a lunch date with a friend, that he can’t seem to contribute energy towards keeping the kitchen tidy, for example.” M nodded sympathetically. “Are you seeing a therapist?” she asked me. “Oh, boy,” said Mr. J. “Here we go!” I gave M an abbreviated overview. She gave me a referral. To an actual person. Who works with her. “I think it would be a good fit,” M says. “If she’s going to sit there and say, ‘So it sounds like you might be under a bit of stress’ I want nothing to do with her,” I shot back. “Well,” M responded, “It’s a ‘he,’ and like I said, I think you’ll really like him.” She gave me his card.

Stumbling Through

In other news, Mr. J is on his own emotional and spiritual (in the most non-religious sense) journey. But that is not my story to tell.

Both Dr. Good Enough and M think Mr. J should consider a small, low pressure, part time job or volunteer position. His therapist agrees.