He was pacing. I could hear the floor squeak each time he reached the spot just outside his bathroom door. Three more steps and then he'd turn and go back the other way.
Pace, pace, pace, squeak. Pace, pace, pace, squeak. Over and over.
Eventually he'd come down the stairs and peer out every accessible window, checking to see if the rain had stopped so he could go out for a walk. I had to be on guard until it did. His need to follow his daily routine was so strong that if the rain didn't stop soon, he'd convince himself it wasn't that bad and head out anyway.
Despite all the reports that people don't get sick from getting chilled and wet, I still worried that he'd get pneumonia. He couldn't afford another bout. It nearly killed him the last time.
We were in for a long day.
I tried not to complain; I knew I had it easier than many caregivers.
At that time, he could still walk and talk. He dressed and fed himself. And, although he needed to be reminded often, he was able to take a shower on his own with the aid of a shower seat, safety handles and the handheld shower head.
I was grateful for those things, even as I prepared for the day that all that would change.
At 81, he was frail and his list of aliments was long.
The major ones were Parkinson's disease, emphysema, heart trouble, hypertension, short term memory loss, the onset of age-related dementia and the paranoid schizophrenia that had defined his life since his diagnosis at the age of 23.
The more minor ones (the ones he likes to pretend didn't exist) included swallowing problems, chronic toenail infections, diminished hearing and poor eyesight.
And, just to spice things up, we had what I called, "stubborn, old Italian disease" to deal with.
This mix of ailments required a team of doctors, a busy schedule of office visits and strict monitoring of his medications.
"It's still raining," he said, "It don't make sense. It rained yesterday."
I didn't tell him that yesterday it was bright and sunny.
If it had rained "yesterday" in his mind, that was his reality and I went with it. If I didn't, his agitation would grow until it reached the point where he'd reject everything I said and become convinced I was trying to trick him. From there it would be a short hop to full-blown paranoia and the need for a sedative. The drug left him so listless and out of it that I tried to avoid using it as much as possible.
"Well, the flowers and the grass need rain. Rain is good sometimes, isn't it?" I asked.
"Yes, rain is good for the flowers … good for the grass… I can't go for a walk. It don't make sense. It rained yesterday," he whispered softly as he turned and headed for the door.
"Dad, it's not time for your walk yet," I called to him, easing my body between his and the door. "You took a walk after breakfast, remember? We can go out this afternoon when sun comes out."
He paused for a moment, his head tilted as he tried to decipher what I just said.
"Yeah, I took a walk after breakfast. I remember now." He smiled and nodded at me before slowly walking toward his room.
It didn't matter that the walk he took after breakfast occurred yesterday. At that moment, he remembered the warmth of the sun on his face and the pleasure of following a familiar routine. He was content and his world made sense.
And for a while…until he came back down and tried again…that was enough for both of us.
Is it ever okay to lie?
While many health professionals agree that "therapeutic lying" is a reasonable approach to dealing with delusions and dementia. Others believe it to be unethical. They say it is the duty of caregivers to orient the patient to actual time and place.
How do you feel about this issue and what methods have you found successful and/or inadequate in dealing with a confused loved one?