I’ve known for some time that I’d be spending some extra time with my Dad this week, as my Mom travels to visit her sister in Minnesota. He’s six years into his diagnosis with Parkinson’s Disease, so I’ve also known that his needs for care have been increasing. But I didn’t really know how how much care he needed. Or how much he’d be agitated by my Mom’s absence. Until today.
My Mom left for the airport around 8:00 AM in the morning. And by 8:30 AM, my Dad had already called 9-1-1, panicked about seeing people in the house who weren’t actually there. The authorities checked in with my Dad and then called my Mom, who reassured them that he’d be all right — but she wanted to make sure that I was heading that way as soon as possible.
As soon as I entered the front door, he welcomed me to have a seat at the dining room table. He said he wasn’t expecting me, but I reminded him that I planned to hang out around the house for most of the next few days. He told me that there were other people at the dining room table with him. People that he knew “from basketball and other places like that.” He acknowledged that they weren’t the same as real flesh-and-blood visitors, but he said that they “exist.” When I asked if he could see them or hear them or what, he said that he could see them. But I couldn’t see them, so I chose to ignore them and suggested that my Dad should do the same.
After some further conversation, Dad said he wanted to take a nap. And that nap became the first of several. Never longer than 30 minutes. When he was napping, I was able to get a little bit of work done: preparing to officiate a wedding ceremony next week… answering text messages and emails… starting to write our October prayer letter… But that was really only when he was napping. And he wasn’t napping for considerable lengths of time.
When he was awake, Dad filled his time with checking on things. He walked half a block down to his condominium complex’s central mailbox to check the mail four times before it finally arrived. His mailbox key got lost twice, so we had to spend some time checking on that, too. After the mail was gathered, he shifted his attention to checking on the trash and recycling bins. And after he determined that he could wheel the bins back into the garage, he shifted to checking the front door for the arrival of my brother-in-law, my nieces, and my nephew (knowing that they were coming to have a Pizza-and-Movie Night with him).
He had an anxious energy about him for most of the time that he was awake. Sometimes, I was able to distract him with a TV show. But even then, he did a lot standing, sitting, pacing… It was hard to see him so restless.
So after a simple lunch of canned soup, I suggested that we should go on an excursion! Maybe driving to Towner’s Woods and listening to Sibeleus’s 5th Symphony (one of Dad’s favorites) on the way. He seemed to like that idea. And indeed, as the music swelled and filled the cabin of my Honda Civic, Dad waved his hands as if to conduct the invisible orchestra (which is something that he’s always done when listening to orchestral music).
After arriving at Towner’s Woods, we walked from the parking lot to the Hopewell Mound overlooking the lake. And I was surprised to see that Dad’s walking form was quite strong. If anything, he walked a little too quickly for my liking. He didn’t seem at all tired on the way back to the parking lot, so I asked if he wanted to walk some more and see the Butterfly Meadow. He actually expressed a pretty significant amount of enthusiasm (for a guy with Parkinson’s) about that idea. So we hiked that direction, and again Dad didn’t seem at all tired. If anything, he seemed invigorated. We sat for a little while at a bench in the meadow. And it wasn’t until we were halfway back to the parking lot from the meadow that he indicated any level of fatigue.
When we got back to the house, however, Dad was definitely ready for another nap. And when he sat up — exactly thirty minutes later — he said that he had a really nice rest. He did, however, ask “Who’s in the front closet?” He didn’t seem too bothered, and I reassured him that there was no one or nothing there except for a bunch of coats, he seemed to relax pretty quickly. A couple of minutes later, he looked up at the ceiling and said, “I love you, hon.” I responded by saying, “I love you, too.” And then he looked at me to ask “Where’s Jan?” I told him that she was visiting Jayne, and he replied, “Oh yeah. That’s right.”
The most unsettling aspect of caring for my Dad has been seeing how unsettled he often is. Particularly with seeing things that aren’t there. He seems to have some awareness of his confusion, anxiety, and agitation. And at one point in the middle of the afternoon, he said, “I’m floating…” and made some arm motions like he was treading water, trying to keep his head above water. A little while later, Dad walked up to the dining room table and asked, “Who do we have here?” When I assured him that nobody was sitting there, he said “Oh, boy. I’m really seeing things.”
So he’s not an uncooperative “patient.” Still, the care-giving has been more intense than I thought it would be. I haven’t felt free to leave him at home by himself because he seems to default to confusion and panic. Even while I’ve been here, he’s made a couple of random, confused, phone calls. So it seems clear that he could easily decide to call 9-1-1 again. Consequently, my day with Dad will also become a night with Dad. But I’m glad that we’ve got a relatively workable situation here in Kent. This new phase of life is definitely challenging, but it just seems to be where we’re at. We will continue to walk by faith, just as we’ve done through other phases of life. So help us, God.