Things can change drastically with LBD. He can lie down for a nap feeling good and wake up an hour later looking like the weight of the world is hanging around his neck. And later that evening see almost normal.
This morning, after a number of days of increased anxiety, he woke happy, almost lively. When I see that, I tell myself “Take it!” Whether it’s 10 minutes, a few hours, or the whole day, enjoy it. Today it lasted the whole day. No, he wasn’t “normal.” I still had to help him with routine tasks, he still struggled to complete a sentence before he forgot what he was talking about, he still had difficulty with spacial awareness. But it was different today. There was little anxiety.
Only once, when he became confused about PT did he say anything tinged with anxiety – and that was quickly sorted. We had been talking with his Physical Therapist, Ryan, about it being the 16th anniversary of our move to Tennessee. Ryan mentioned that his internship would be ending in a few weeks, and that he would be moving on to another location. The two bits of information got tangled up to form a knot wherein Mr. Dewey thought we were moving and would need to find a new PT clinic. Once explained, he was good to go.
He enjoyed the day – really enjoyed it. He enjoyed the taste of lunch, our walk, the challenge of PT. He tucked into a treat of hot chocolate with gusto, no hesitation, no “I shouldn’t be enjoying this.” It was great.
How long will it last? Who knows. He went to bed looking forward to our planned day trip with friends tomorrow. I would love to see this Mr. Dewey tomorrow. But there is just no way of knowing. Even so, today was great. I’ll take it.
Update: the next morning he woke up disoriented and shaky. he was “crumpled” all day. That’s what I call it when his body and his sense of self just seem to try to hide from the world. He stands and sits like a question mark. His voice gets small, puny, mumbly. His eyes look clouded and his face holds an expression of fear. I had to reassure him many times that we were not taking him away from home, were not going to leave him somewhere to fend for himself, and would be returning home together at the end of the day. It was sad. I wanted the day to be so wonderful for him. He did enjoy the drive to Cades Cove with two of our dear friends, the picnic lunch, the perfect weather, but all through a veil of anxiety. Damn.
Lewy, Dewey and me 