We're participating in a group called Stepping Stones, which meets every Wednesday and is co-facilitated by TWU Occupational Therapy graduate students and the Alzheimer's Association. The caregivers meet in one room while our loved ones engage in creative and physical activities down the hall. They seem to have a lot of fun, based on all the noise they make.
I wasn't sure Bill would enjoy it, but he seems to have fun and engaging with a group of people is good for him. He's made some arts & crafts projects that are now proudly displayed at home.
Some time before we started going to Stepping Stones I asked him if he wanted to go to the Denton Senior Center. He kind of turned up his nose and said "What would I do all day with a bunch of old people?"
I dropped the idea and started a futile search to find someone to occupy his time for a few hours a couple of days a week. My therapist had suggested getting a group of eight people together and scheduling them so that they didn't have to commit to more than once every 6-8 weeks or so. She suggested simple things like somebody picking him up and going for coffee, a dollar movie, the dog park, or a museum, or just hang out together. Simple enough, right? I can usually get somebody to pick him up for Bible study and Wednesday church, but the rest was harder than I thought. I prevailed on a men's group he's in, and got no response.
Yes, I was frustrated. It didn't help that I read this article about caregiver abandonment.
This past Wednesday he had a good session at Stepping Stones, then I rushed off to school. Thursday was a day of doctor's appointments and Friday I was on campus most of the day for faculty meetings. (I'm rarely on campus on Fridays.) I came home about 5:00 exhausted, and needing to freshen up before we went to All Saints Day Mass. Relaxing in front of the TV with a glass of cider I thought I could clear my mind a bit when Bill walked in, hands behind his back, and said "Look what I won!" He produced a cake in a box from Kroger.
How the heck did he get a cake from Kroger? He doesn't have a driver's license, the car keys are all locked up in the safe, and the nearest Kroger is more than 3 miles from the house.
"Oh really?" I gulped. "Won it where?"
"You know, where I get together with those guys." I of course think he's talking about the Stepping Stones group, which is mostly men.
"Bill, that group met two days ago. You didn't bring a cake home with you then." I was trying to be calm, but I knew something was up.
For about the next 10 minutes we had a non-conversation that ranged from "the cake was already in the refrigerator" to "I won it playing a game with those guys at that place we go to." Mind you, I would have remembered bringing a cake home on Wednesday, and all he had was a bag of Halloween candy. I haven't been to a Kroger in weeks, and he's not supposed to be driving anywhere--besides, when he gets into a grocery store he heads straight for the salty snack aisle. A cake is the last thing he'd buy.
I try again. "Where did the cake come from?" He can't answer. It's clear he knows--he has a mental picture of the place, and the circumstances--but the part of his brain that will allow him to communicate the details to me just isn't working. And he's as frustrated as I am. The more he repeats himself and/or changes the story, the more agitated we both get.
I asked him if he drove somewhere to buy the cake, but he swore he hadn't been driving. I asked him if somebody had brought the cake to the house, but he kept insisting he won it playing a game at "that place I go to where all those guys are."
This is going nowhere and I throw my hands up in frustration. Then he did something really remarkable.
"OK, I'll tell you the whole truth," he said quietly before walking back into the bedroom. He returned with a set of keys to the truck that I didn't know existed. He handed them to me and admitted he had driven to "that place" and played games and won the cake.
I reminded him he didn't have a driver's license and he's not supposed to be driving because he gets lost and/or gets tickets for speeding and running lights. He gave me a blank stare. I locked the keys up and we went to church. When I came home I called the Alzheimer's Association's 24 hour help line for the first time ever.
The counselor was very comforting and helpful. She reminded me that the fact he wants to get out and do things is good--many people with Alzheimer's just sit around home. Her words of encouragement and wise counsel were a great help at a time when I was panicked, knowing he was driving around without a cell phone or a clue of where he was going.
After chatting with a dear friend I managed to get to sleep--and slept for about 12 hours, I was so emotionally drained and exhausted. What if I'd come home early and he wasn't there? What if he'd gotten lost? I had no idea what he was wearing, what time he left, or which direction he was headed. How could I help the police find him? There were so many "what ifs" that went through my head, and lately there has been a spate of silver alerts for missing elderly people with dementia. The thought of him driving around by himself is too scary to contemplate. It was less than a year ago that he got lost driving and I had to call the police. Fortunately email alerts on our debit card transactions allowed us to figure out where he was, and he got home safely after several hours of oblivious fun--for him.
Saturday we got in the car and I said "Show me where you went." He couldn't. Initially he said "It's just up the street from that place we go to on Wednesdays." I drove there, the Martin Luther King Jr. Recreation Center, and we explored the neighborhood. Nothing. He couldn't seem to navigate at all. We tried another route, and ended up by TWU. He described the place as having lots of green around it and a basketball court. I began to wonder if he'd ventured all the way up to NorthLakes Park, which is on the far north side of town.
I did use this as an opportunity to point out exactly why he shouldn't be driving, and in that moment he agreed and seemed to understand the danger he could be in. But that too will pass, I'm sure.
We returned to the MLK center and he went inside to ask for directions. He came out with a brochure for all the parks facilities, and we started driving around. The second one we went to was the Senior Center, downtown near the Civic Center. We had already driven past it twice on our earlier wanderings--I've never been there and only vaguely knew where it was. But this time he recognized it. It was closed but we got out of the car and walked around, looking in the windows and checking out the place. It looks nice. He said this was definitely where he was, and he wants to go back.
Assured that this was where he spent part of his Friday, we went home, and I started looking up their activities. He's interested in spending time there--I just need to arrange transportation for him. But if this is where he wants to spend part of his days, playing games, reading, doing arts and crafts, I'm all for it. Anything to keep him busy, mentally stimulated, and socializing in a productive manner and in a safe environment. And maybe it will give me a little respite, too.
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