June 22, 2022

We just had John's neurology appointment. We have one every 6 months. The Dr gave John the MMSE and his score dropped another couple points to 8. I asked if that was in the severe category, but the Dr thinks he's close, but not there yet. The score could put him in the severe category, but since he's able to do some daily living activities on his own, he's probably still at the low end of the moderate stage. He needs help dressing and brushing his teeth, but he can still feed himself and he can still use the toilet unassisted. Sometimes he needs a verbal reminder of why he went into the bathroom, but he's able to use the toilet on his own. Thank God. Esamples of a couple of the questions John could answer on the MMSE are the state and city he's in. He didn't know the current month or year, and thought the season was Christmas. He couldn't copy a simple drawing of shapes, didn't know what floor we're on in the house, couldn't spell 'world', couldn't write a sentence about the weather, couldn't remember 3 words, couldn't follow simple written or verbal instructions to close his eyes or fold a piece of paper. I asked if we could get another MRI of his brain to see the changes that have occurred in the last 5 years, so the Dr agreed to that. The Dr said it sounds like the current medication cocktail is working and recommended we stay on that course. The Dr asked me if I have made any plans for additional care. I admitted that I haven't made any tangible plans, but agreed to have some information sent to me so I'll have it when I need it. My goal is to delay that as long as possible, both for practical as well as financial reasons. For now daycare at EasterSeals makes that possible.

June 19, 2022

Today is Father's Day. When we woke up John was asking about the day, asking what was happening in a confused kind of way. That's typical. He asks about what is happening, and then regardless of my answer announces 'it's horrible' or something similar. Today is Sunday so we didn't have to rush out of bed, so I lingered and asked him if he had any children. I asked in a confused way, as though I was wondering about it - not in a way that would make him feel questioned. He responded that he didn't think so. I thought my wording might have thrown him, so I asked the question a few more times in different ways. Clearly John didn't realize that he is a father and that he raised our kids. He knows who our kids are, I think he doesn't understand relationships. He doesn't understand how family members are connected to him. It's much like he knows me, but doesn't know I'm his wife. So I explained that each of our kids are his children, that he raised them into adulthood, and they are each thriving. This weekend it seemed that John struggled more than usual. It's too soon to know if he's having a couple off days, or if he's dropped a bit more in his overall cognizance. He struggled to eat (not knowing if he should use a fork or his hands) and I felt like I had to help him more than before. This morning I cut his toenails. He was furious about it and yelled out for help. I was worried the neighbors would hear! He made the job tougher than it needed to be. Afterward I fed him breakfast and he refused to eat. He was too busy pouting. He was still really mad at me, but couldn't remember why.

June 13, 2022

Lately we've noticed that John has been less agitated. He fights less when we're getting ready for the day, and argues less often with Jordan when she's trying to get him into the car to go to EasterSeals in the morning. It's a significant relief to have fewer battles. That's not to say he isn't complaining - he does that often. But he's less angry and combative. But we've also noticed that his memory is even shorter and he understands less of the world around him. He often doesn't remember things for more than a moment. But after a few reminders he sometimes remembers that I'm repeating myself. He's confused a lot and that frustrates him. We'll be gone all day but once home he asks 'who's coming over?' because he's forgotten that we just did something and he needs something to do. Today was yet another death of sorts. I completed the paperwork to resign John from the California Bar Association. I'd been avoiding the paperwork for a few days but finally forced myself to face it. It feels disrespectful to him to file this resignation. If John had any understanding of what I was doing, he would be extremely angry and upset. Being a lawyer has been a source of pride for him and it has been a significant part of his identity. The resignation is a large nail in the coffin of his life. I kept him on inactive status for a number of years (paying reduced dues and avoiding the requirement of continued education). But it's ridiculous to pay fees for something that he'll never do again. Once an attorney resigns from the bar it would require passing the bar exam again to return to active status and practice law again, so it's a big deal and there's no going back on this one. So I'm stuck mourning a loss he no longer understands, but would devastate him.

June 1, 2022

Jordan graduated from law school a couple weeks ago. It was a beautiful day to celebrate her accomplishment. Amid the joy was the sadness that John didn't understand what was happening. He would have been so excited if he'd known what was happening. Instead he sat there with a blank look on his face and followed us around without comprehension. My dad would have loved to have been there. He would have been thrilled that Jordan went to law school and was graduating. As Dorene said, he was weeping tears of joy in heaven. Despite the joy of the day, I felt the cloud of that loss as well. I mentioned John's blank face. A couple people have commented to me about that lately. People who have first hand experience with Alzheimers. These people have recognized that blank Alzheimers look on John's face. Not long ago John appeared very normal, very typical. But that's changing now. I've also noticed ground slipping in other ways. Recently I was asking him to undress to get in the shower. He wasn't able to do it. He didn't understand what I was asking him to do. When I asked him to pull his shirt off, he just looked at me with frustration and complained that he didn't know what to do. A couple times he pulled at the hem of his shirt, but quickly dropped his hands to his side. I had to pull his shirt off for him. This morning he wasn't able to put on his shorts when I asked him to. I had to hold the shorts for him and instruct him to step into the shorts. He also couldn't figure out how to turn off the water when he brushed his teeth. And lately when I give him his pills in the morning (I have to put them in his mouth now, he can't pick them up and do it himself anymore) and then tell him to drink from the glass of water, he often can't do it. I lift the glass to his lips and start pouring the water in his mouth. Sometimes that makes him mad and he fights to push the glass away from his lips. Sometimes he drinks it when I tip the glass. And still other times he'll drink from the glass on his own. This morning when I asked him to brush his hair and handed him the hairbrush, he blirted out "I don't know what to do with it!" Edna has commented a number of times that "it's going fast now." It doesn't feel fast to me, but I do notice changes. They creep up here and there, typically starting on an occassional basis. Then the behavior increases in occurrence until it becomes the new typical behavior. Edna asked me about my care plans for John's future. I told her I plan to keep him at home as long as I can handle it - both for our sake as well as for financial need. Any type of care is prohibitively expensive. I want to keep him at EasterSeals as long as possible. I wonder if they allow him to continue there because of Edna. I suspect that if it wasn't for her, they'd tell me that the level of care he needs is no longer compatible with what they offer. I know that they struggle whenever Edna isn't there and someone else has to step in and work with John. Hopefully I'm worrying unnecessarily for now, but only time will tell.