March 1, 2025

There were 2 events tonight that in some way John was a part of. First there was a Servite dinner. John's senior picture was displayed so he could be there in some way. He would have loved that. The second was the Alzheimer's Association Inspiration ALZ Gala. I was invited to participate at a Caregivers table sponsored by a donor. Lots of money was raised for the Alzheimer's Association. It's an incredible organization that suppports those living with the disease, those that are caring for people with the disease, and those who are committed to research and finding a cure for the disease. For me, the highlight of the evening was Jay Allen performing his song "Blank Stares". I became aware of the song a few years ago. It's about his mom, who, like John, had Early Onset Alzheimer's Disease. The song begins with a voicemail message from her that trails off. He sings about the glimpses of her that he sees between her blank stares. It's a beautiful song that had the place in tears. A definite highpoint of the evening.

December 28, 2024

After dinner and our grooming routine tonight, I loaded John into the car and took him to see the Christmas Sparkleball neighborhood nearby. The neighborhood has lots of lights but is different in that the neighbors have made tons of sparkleball christmas light balls that are hung from trees and houses throughout the streets. We drove around listening to music John likes as he looked out the car window at all the light displays. He seemed to enjoy it. He paid attention to the scenes around him as he sat silently in the car. Once he tried to open the car door but I reached over and moved his hand away. Then on the way back we were sitting at a traffic light and he popped the car door open. I quickly leaned over and grabbed the door and pulled it shut right away but that spooked me a bit. Since the seizure like activity that John had last month, he seemed to be more aware and spoke a bit more for about a week. Then he reverted back to his prior self - which is more silent and less involved in what is going on around him. One thing we've noticed lately is that he spends more time with the ladies! Sometimes he can be found walking with a woman, holding her hand as they stroll. This happens with various women - not just one! I like that he finds some connection that way and joke about his girlfriends and how he's a ladies man now! John's suite mate (their rooms share a bathroom) died earlier this month. He was healthier than John, but fell and was taken to a hospital. He had a heart attack and died at the hospital. That was sudden and sad. Now I'm interested to see who might move into that space in the near future. I've heard people say that Alzheimer's Disease is death before death. That's so true. It's certainly a life changing experience caring for John, as I'm sure it is for everyone in my position. November was National Caregivers Month. Since I didn't mention it last month here's a thought I read about caregivers - it's something that resonated with me: If you know someone who is caregiving, be curious about them. Just because they look fine doesn't mean they are. Not saying anything about their person AND them comes off as dismissive. So ask. Ask how their person is. Ask how they are. And keep asking.

November 14, 2024

John looked good today, so there doesn't seem to be any lingering effects from his seizure-like episode yesterday. When I arrived and joined him at the dinner table he looked at me and asked "Are you somebody I know?"

November 13, 2024

John got his haircut today and it looks good! It was loooong overdue. Earlier this afternoon I received a call from the hospice nurse who was there doing her rounds. All was well. We talked about his decrease in activity and increased tiredness. He has seemed drugged up lately (he's not), looking around with his eyes half open, sitting often while walking, things like that. A while later I received a call from Crescent Landing. They said John was sleeping in a chair in the visitor's room while the staff was in there having a brief meeting. John started twitching and began to fall forward. They caught him and brought him gently to the floor. He seemed fine and escaped any injury a fall may have caused. They called me to let me know what happened and also called hospice so a nurse would come check on him. When I arrived a little later the hospice nurse was there checking him out. He looked good and his vitals were all normal. I suggested that he may have had a seizure. She said he had seizure like symptoms and that it could have been a seizure or a mild TIA - transient ischemic attack, also known as a mini stroke, where symptoms are short-lived. When I saw him, John looked more alert than he has in a while. His eyes were fully open and he looked at me as I walked toward him. He ate all of his dinner and 2 pieces of lemon meringue pie (always a favorite of his) - so he seems perfectly fine. Of course they will continue to keep an eye on him. But suffice it to say, he looked really good tonight.

November 3, 2024

These days John is less agitated, so we've reduced his daytime meds. I think that initially made him more aware, but that could also be a placebo effect. I thought he'd be more aware, so I think I see it. He has been quite stable for a few months. He still walks around all the time, but he stops to rest more often now. Recently when I was there he walked into a woman's room, grabbed her wheelchair, and proceeded to take her for a walk! The staff told me that he does this occassionally, and most of the time the women are fine with it. If they're not, the staff intercedes and frees the resident. It happens with the women because the majority of the residents are women. Plus, the men who are there typically aren't in wheelchairs yet. When it got hot later in the summer we tried dressing John in shorts and it worked! He'd been wearing adaptive clothing that are one piece outfits with sweats on the bottom and a shirt on top that are connected at the waist - but don't really appear to be conneccted when viewed from the front. The back has a long zipper. These outfits prevented John from partially undressing and peeing around the building. That's a dignity issue as well as a cleanliness issue. He'd been wearing them for a while, but they're too warm for hot days. Fortunately he didn't have accidents when we switched him back to traditional shorts and shirts. Now he wears his typical clothing all the time so that's nice. It makes it easier to change his briefs and clothes as well. John can still feed himself, but typically needs some help. I've noticed that often times when I arrive after dinner has started, that a staff memeber will already be helping him. When I get there they move on to help another resident and I take over with John. I often push food on his spoon, or reassemble a sandwich so it's easier for him to eat. One thing I always think is funny is that he looks clearly annoyed when I interfere with him trying to put a spoonful of food in his cup. It's strange but he often tries to do that. Then I try to prevent it, and he does a quick exhale of irritation. John doesn't typically say more that a word or two at a time. He might say 'don't' when I brush his teeth, or 'stop that'. But about a week ago we walked into his room after dinner and he said 'I need to blow my nose.' He expressed a true need! And spoke a full sentence! So I quickly grabbed a tissue, put it and his hand to his face, and he blew his nose. It was quite a moment.

September 9, 2024

A couple weeks ago the staff told me that John asked 'Where's Susan?' Tonight John asked me 'Do I know you?' I simply replied 'Yes, I'm Susan'.

September 8, 2024

6 years ago this past week my dad rather suddenly passed away in Colorado. He'd been taking care of my mom who was fading away with Alzheimer's. He had COPD and had reached the point where he could no longer take care of mom. He believed he needed respite care to recover from his exhaustion. He called his Dr requesting that he be hospitalized for a few days so that Medicare would cover his respite needs. His Dr told him to immediately call 911. He quickly started to make arrangements for my mom to be placed in memory care. I'd visited my parents a couple weeks earlier, but he had refused to tour the place he was interested in, so he'd never seen the inside of it. He was too tired to walk through the place. My parents had some in home care so when Dad found out that mom couldn't be placed for a couple days, the owner of the home care agency made arrangements for his own wife and a couple of our parents friends to provide care for my mom while arrangements were made for memory care. That's a small town for you. By the time I arrived in Colorado my mom was placed in memory care and my dad was in the hospital, by now having had a couple strokes. He died a couple days later. We quickly planned a funeral for Dad, closed up their house, then tossed Mom in the back seat of our car and drove her to California and moved her into memory care. I hadn't had the opportunity to tour the place, but Danielle checked it out and moved furniture there so Mom's room was ready when we drove into town. John was well into his dementia journey at this point, but was still able to stay home alone while I was at work. He and I started visiting Mom most days, and did so for a year and a half, until the pandemic began. 6 months later Mom died of Covid. We were not allowed to see her that entire 6 months. I'm very resentful about that, thanks to Mr. Newsom. For me, our dementia journey greatly intensified when my Dad died 6 years ago. Prior to that time my Dad and I spoke on the phone most weekday mornings while I drove to work. We compared notes on our spouse's dementia journeys. Mom was ahead of John on that path. Then suddenly I had responsibility for her as well as John. Around the time she died, John was no longer able to be home alone, and started day care. 4 years later I placed him in memory care. And now I'm back to almost daily trips to memory care. It's been a difficult road these past 6 years. There have been a lot of losses. I have to say, I'm fucking sick of dementia.