“How did I get here?”
“Where is everyone?”
You may think this is the beginning of a Talking Heads song, but, no, it’s just Sky trying to orient himself when he wakes up in the morning. I make coffee, and bring it to him, setting it on the bedside table, helping him into his bathrobe, and adjusting the covers as he sits up and wonders.
I ask him questions to help him orient himself to place.
“What do you see on the wall?”
“Are there any cats here?”
“Did you hear an airplane?”
Because we spend time both in our home and at our camp, I ask him these questions to help him remember where we are. Our home has a world map on the bedroom wall, and our cats stay in one place — often on the bed — and, if the wind is right, we’re on the take-off trajectory of the local airport. The first plane leaves at 5:45 a.m. with several more right on its heels. I wonder where they all go? I wonder what all those people are doing? Probably not living with someone with dementia.
I try not to be jealous.
Sky has not been able to be left alone at night for nearly a year now, and we’re soon coming on to not being left alone in the day time. Right now, a couple of hours away in the day is OK, and I relish that time for long walks, doing errands, having lunch with a friend. I also can rely on Sayer to stay with Sky, or Dana when she comes to visit. I then have time for bigger pursuits — writing, for example, or some activity related to the non-profit board I sit on. Now and then, I am graced with a few days away, courtesy of Sayer spending the night with Sky and attending to his needs.
Sky’s intellect is strong and he — along with so many of the rest of us — is deeply concerned with what is going on in our country, and in our world. But the rest of it? The so-called “activities of daily living” (ADLs) are not so crisp. I have to choose his clothes, help him dress, remind him to bathe, prepare his food, cover him up at night. And continually orient him to time and place and people. I have to spell the words he wants to put in his crossword puzzle. I have to start and stop the audio book he’s listening to. I write the day’s weather and activities on the white board so he can check in with what’s going on.
Oh, and did I mention the break-in? Our house was broken into, trashed, and robbed the day before Thanksgiving when we had gone to our camp for the holiday…. So we came back, only to face the cops, the mess, the insurance company, and the feelings of vulnerability and betrayal. Sky bumped down a few more steps into the rabbit hole after that event, not daring to leave the house for several days lest it be broken into again, waking up in the night hearing noises, and fearing the worst.
I spend a lot of time calming him down.
This isn’t hard. Not yet. Except for not sleeping through the night when he is afraid and wakes me up worrying about all kinds of things that don’t exist. Luckily, Sky naps at least once a day, so I can sleep, too. It’s just like that advice given to new parents, “Nap when the baby naps.” Oh, but I would want to do other things then — like clean the house, read a book, talk on the phone, write in my journal. I know better now, and sleep when he sleeps.
I’m glad all of you are out there in cyber-land. I know I’m not alone. I don’t expect you’ll hear directly from Sky again, but we could all be surprised. This is one strange disease.