April 22, 2023

It's been quite a while so I have a lot to catch up on. I read a quote recently on Facebook that resonated with me: "The reality of this disease is that there's no remission, there's no stopping it, there's no slowing it down, there's no cure, and there are no survivors." --Suzanne Tackett Not exactly inspiring, but completely true. I've noticed a couple interesting similarities between John and our grandson. Both currently like to walk around with both their hands in their pockets. And his parents worry that he might fall and not be able to get his hands out of his pockets in time to break his fall. I have the same worry. Also, they're both wetting their pants occassionally. Our grandson isn't quite 2 years old, so he's ahead of the game. John of course, is not. He wet his pants last week at EasterSeals. Edna said he was pacing around the room while she was working with a table full of seniors, so she didn't realize he needed to go. John usually holds his stomach and tells her he has pain. Then she takes him straight to the bathroom. John wasn't near her when the urge hit, so it was too late. He came home in depends that day. On another day at EasterSeals Ben picked up John early. He was agitated, and it took 3 people to gt him in the car. Once home, he griped at Ben for 3 straight hours until I got home. Then he calmed down. He's been more agitated in the evenings again so I was surprised he calmed down that day. Generally though, John has been less difficult lately, so after some encouragement by a guy in one of my support groups, I decided to take a short trip with John to visit some very close friends of ours in Paso Robles. He did surprisingly well. He did try to pee in their bathtub, but I quickly got him to the toilet so that mess was averted! We had a really good weekend. The area is so beautiful with rolling green hills as far as we can see (thanks to our rainy winter). We did some wine tasting, hung out on their patio, and ate like kings. They took such good care of us the whole time. It was the first time we were away from home overnight in 2 1/2 years (when we traveled for my moms funeral). After that successful trip, I went again to Paso Robles, but with my brother, his wife and another friend for my brother's birthday. This time I left John home. 4 of John's siblings and 2 of our kids took shifts watching John. In general it went well, but the night was a problem. John's brother Tom and Ben struggled with John off and one for an hour trying to get John to take his evening medication. This pill is very important - it's the antipsychotic in an extended release formula that also makes him drowsy. I tried to help over the phone, but John zipped his lips and refused. Ultimately John dozed on the couch for a couple hours and then spent the entire night pacing around the house. Ben had to stay up all night with him and barricade the doors to keep him from wandering outside or in the garage. So that part was an epic fail. In the morning though his sister got John to take all his meds and then a dozed intermittently throughout the day. As all that was going on at home, I was able to have a wonderful time away from it all. We went wine tasting at the Daou Winery and not only were the views amazing, but the wine was incredible. It was really good to have some respite time and spend it with some of my favorite people. I recently stumbled upon a letter that John wrote to his doctor in 2016. He still hadn't been diagnosed with Alzheimer's yet - that came a year or so later. I'm surprised at how well he could still write then. What struck me most was that John said "In the summer of 2009 I started noting cognitive difficulties with memory." I didn't realize that his symptoms went back that far. I thought symptoms appeared in 2011, not 2 years before then. That means he started noticing symptoms when our youngest was only 10 years old, a full 14 years ago. John's letter also discussed the symptoms he was aware of in 2016. He wrote: "My own assessment is that my cognitive ability to perceive and analyze is stable, but I continue to have a great deal of difficulty in accessing information that is in my head. I get lost driving to work some days on familiar roads that I've traveled many times. I get lost going to the Brea Post Office which is 2 miles from my home. I have difficulty recalling names of people I've known for years, including family members. At a recent family gathering I initially knew the name of my niece when I arrived, but later in the day I could not recall her name. Just the other day I was looking for pliers where they should have been, but did not see the pliers. The next day I looked again and this time I saw them right where I had looked the day before. I recently picked up legal pleadings that I thought were mine, but the next time I looked at them I realized they weren't. Etcetera..." It's an interesting and sad look at his self-awareness of memory loss. It also slams home the extent of loss that has occurred in the last 7 years. 7 years ago his life was being eroded by the disease, but he still had independence. That independence has long been lost, and he now has only a very limited glimpse of who he used to be.