Come and tell me goodbye...

I'm sure she told him that it was Friday, which would mean that "Ruth is coming today." I was greeted very happily by both of them.

There was a list ready, of things they wanted me to do. One of the daughters was there, and I got the feeling that family was going to be drawing  even closer now. I brought them Chinese food for dinner, and hard boiled eggs from my neighbor, Michael's, chickens. I made them egg salad sandwiches for lunch, and suggested that they sit at the table, as a family, while I started the chores on my list. He, alone, is unaware that I am suggesting this because each day may be the last. The daughter was distracted, making calls to, and waiting for calls back from, the Neurologist. The rapid, rapid decline is alarming. I get that. They would like an answer. Sadly, I don't think they will like the answer they get.

After lunch, his daughter suggests they take a walk outside. All he hears is "outside" and thinks that he is finally going to be able to work in the yard. He is SO confused now. It is heartbreaking. He did not know why we were getting a heavy jacket on him, as well as heavy gloves. He wanted his work gloves. He was so happy to be going  out to work in the yard. He looked at each of us, searching for the answer he wanted. This tall, handsome, proud man stood and allowed his daughter and caregiver to dress him warmly. I showed them how to have him sit in a dining chair next to the table, for putting on shoes and such, and how to "cue" him to use his hand on the table to help himself stand. The new normal. Cues. Help standing. Helping put on his shoes, coat, and hat. Pretend you're the teacher in the 'Peanuts' movies. All he hears is "Mwah mwah mwah"  Illustrate what you want. Act it out. Be infinitely patient.

The daughter and father go outside, and I am alone with his wife, who beings to talk to me, and cries. I teach her a new phrase to use with him - "This is hard."  It IS hard. And both of them need to hear it, and have permission to say it. I gently tell her, "When he gets frustrated with you, or you with him, say to him, gently - 'this is hard.' It will give HIM permission to echo this thought and tell you that it's hard for him, too." I know she understood what I was saying, but she is willing this not to be the new normal.

This is hard. Oh my goodness, is this ever hard.

The hardest part of the day, for me, was the last part. I walked into the family room where he was alternately snoozing and attempting to read the newspaper, and let him know I was preparing to leave. He said "What I want to know is.... how you eat those big red...... those red...... those red things....... those things you make that are big and red...."  I know how to handle this. I say "You want to know how I eat those things!"
"YES!" he says, so thankful to be understood.
"Well, let me tell you," I say with a mischievous smile. "I can eat ANYTHING!"
He laughs; relieved.
His wife says "Well, you don't look like it!"
I turn to him and say "But, let me tell you what I made for YOU to eat, today!" and I describe the pumpkin bread. He smiles and agrees that this sounds so good. He's still on the big red things, though, and he says to his wife "I think it must have been while I was out with the cows..." and he gestures toward the back.
She does not yet know how to talk to the new him, and it's hard. This is hard. The wife and I leave the room.

I got ready to leave, and suddenly he had risen to his feet, unassisted.  Spidey sense - I race to the family room to be sure he's okay. "Wow," I say, "You got up very well on your own!" but Don is staring at something. He sees something. He takes several steps backward, with a look of terror on his face. His hands are raised, slightly, and his gaze is fixed. I break this with a touch to his arm. Remember - touch, smell, and music. "Come and walk me to the door!" I say cheerfully. "Come and tell me goodbye."

This broke the spell, and he was back.

I don't know what he saw. It scared him. That breaks my heart. I am worried that the family won't know how to comfort him, or stop this. Touch him. Hold onto his arm, his hand - steady him. He will remember the touch.

It's the most hopeful of goodbyes. She had residual tears, and he was cheerful and gracious. "PLEASE drive safely," she pleads. What I know this means is "Don't leave us."

Because this is hard.

But doing this alone is more than hard. It's impossible.