A Missed OT Appointment
Mr. J had an appointment with his Occupational Therapist on a Wednesday. We talked about it on Monday and on Tuesday. On Wednesday, as he left the house, we reviewed our plan. He would leave from his morning destination at around 20 to four, in order to arrive early for a 4:15 pm appointment. I would meet him there.
I arrived around four. I called Mr. J. “I’m just leaving downtown,” he said. Which meant he did not, in fact, leave at 20 to four. Which meant he was going to be late. I went to check him in at the desk. “He won’t be here on time,” I say. “But I’d like to talk to Megan, our OT, alone anyway, because this is part of the problem.” The woman behind the desk nodded.
A Change in the Routine
At 4:15, Megan called me back. “What’s going on?” she asked. “Well,” I said. “A friend of his who saw him once right after he was diagnosed and next, just a few weeks ago, has decided that Mr. J is “fine.” And swore he’d help him get his license back. And offered him a job.” “A job?” asked Megan. “Full time,” I nodded. “We would never, ever, send someone back to full time work without easing in by starting part time,” she said. “We want to set him up for success.”
At that point, Mr. J called. “I went to the wrong one,” he said. “What do you mean,” I asked. “I went to a different one of our insurance company’s buildings, in a different part of town.” Please note that it was not a building where we regularly seek care. Nor was it a building where we have ever seen Megan. But he did go there a few weeks ago, when he had an appointment at another different building on the other side of the city. Megan coaches him on how to put the correct address into GPS and he hangs up.
Exploring Mr. J’s Work Day
“Is he eating lunch?” Megan asks. “Probably not,” I say. “Could you set up a system to have him pack his lunch?” “Here’s how I see that going,” I reply. “I say, ‘Did you pack your lunch yet?’ and he says, ‘Not yet.’ Then later I say, ‘Did you pack your lunch?’ and he says, ‘I’ll get to it,’ and then as we are going to bed, I say, ‘Did you remember to pack your lunch?’ and he will say, ‘I’ll do it in the morning,’ then he doesn’t do it in the morning.” “I see,” Megan says.
“How about the household,” Megan asks. “What does he do to contribute around the house?” “Nothing,” I say. “Nothing?” Megan asks. We sit in silence for a minute. Then I say, “If you were a marriage counselor and we were having this conversation, I’d probably be thinking about leaving him. But you’re not a marriage counselor, and he’s. . . “ “Complex,” Megan finishes my sentence. “This whole situation is complex,” I agree. Then Megan follows up, “He doesn’t do anything?” “If I ask,” I tell her, “He will bring down the laundry. Or put a load of dishes in the dishwasher. Or help me with the garbage. But no, he doesn’t initiate anything.”
More silence. We both know this is the disease. But it still feels overwhelming.
A Self Care Suggestion
“Who are you seeing about all of this? Who’s your therapist?” Megan asks. “I don’t have one right now,” I respond. “The first one talked about her other clients with me, which probably means she’s talking about me with her other clients, so that only lasted for two sessions.” Megan nodded. “And the last one,” I continued, “Told me, ‘You make my job so easy, you’re doing exactly what you are supposed to be doing,’ so I didn’t find that particularly helpful.” Megan said she’d look into a referral for me.
Mr. J arrived at the appointment at 5:00, which was 15 minutes after it was supposed to be over. Megan asked him why he went to the other building. No answer. He didn’t know. Mr. J asked if it was normal to be overwhelmed at work. Or if maybe his brain just couldn’t handle it. Megan thought some cognitive testing might be in order to answer that question.
And so it goes.
Oh, gosh…what a load you’re carrying. That’s immense.
This sounds so much like my husband's early days with young onset dementia. It's all so hard, and most of it is stuff others just can't see (hence the friend's very unhelpful assessment of Mr. J.), which makes everything harder.
It's a lot. I see you.