December 28, 2023

John came home on Christmas Eve since that's when most of our kids could be together. He was tired, but the day went all right. When I arrived at Crescent Landing I could see him down at the end of the hallway. He was peeing on the floor. Fortunately that meant he wouldn't need to pee for a bit at our house! He did later though, on my new bathroom rug. He made it to the right room - the rug was washable, so not all that bad I guess. Once it was time to head back he was pretty tired and was dozing on the couch. That caused more confusion so it ended up taking 2 of us to get him off the couch and into the car. It was easier getting him out of the car once we arrived at Crescent Landing. The hospice nurse called me the day after Christmas to report that John was really tired again. She suggested a couple changed that make sense, so hopefully that will help. But then last night around 9pm I received a call from the Med Tech saying they'd witness John falling. He'd been pacing around, but fell asleep standing up and then fell down, hitting his head. They'd already called an ambulance and the EMTs were taking him to the ER. I asked if it was too late to stop them, and it was. Danielle got to St Jude pretty quickly, and found that John was already in a bed in the ER, so the EMTs had left. He was alone and confused. I got there a bit later (I was driving home and on the west side of LA when I received the call) and the ER staff was beginning to run a bunch of tests. They ran blood tests, including one to see if he'd had a heart attack, they took a chest Xray, CT scan of his head, an EKG, and flu, RSV and Covid tests. They also wanted to check for a UTI but that involved a catheter so we refused that test. All in all, they poked and prodded, doing due diligence, and found nothing except that John has Influenza A, but no fever. They finally discharged him and called for an ambulence to take him back to Crescent Landing because he was asleep and moving him in my car would have been extremely difficult. We got there after 2am and once he was settled in bed I went home. I understand that the staff at Crescent Landing are following their protocols. But the whole process causes increased confusion for John and must be terrifying. Our goal is to provide him with as much comfort care as possible, so the trip to the ER (the 2nd one in 15 days) is too much for John unless it's truely necessary. Today I spoke with the director at Crescent Landing about my concerns. He agreed to ask the staff to call me when the ambulance arrives so that I can talk to the EMTs about the necessity to take John to the ER. Hopefully I'll be able to limit those trips to when they're really necessary, and save him the agitating and bewildering experience in the ER whenever we can. We also discussed discontinuing the 3rd of the 3 nightly checks that the aides do. The 3rd check occurs around 4:30am and sometimes John wakes up and stays awake from then on. Hopefully he'll be able to sleep longer now without that interruption. We're also going to look for ways to improve his sleep schedule so he sleeps better at night and is more alert during the day. Hopefully he'll recover from the flu quickly and feel stronger as a result. He wasn't realy showing flu symptoms so we're not sure where he's at in the cycle of the flu. Hopefully he's on the tail end. He hasn't had a fever so that's a good sign. And hopefully John, Danielle and I can catch up on our lost sleep tonight!

December 18, 2023

Yesterday was John's birthday. I brought him home for the day, and it turned out well. He seemed good and happily munched on food throughout the day. He did eat pistachios, shells and all. I also got a rock out of his mouth. He peed in the laundry room once, but as options go, that wasn't a bad choice! On the drive back to Crescent Landing we drove through the neighborhood next to Fullerton College to see all their sparkleball Christmas lights. It was nice - just me and him, and he looked at all the lights, and I talked to him about all the wonderful people in his life. Some of our favorite songs happened to play on the radio so that added another layer of nostalgia. Today we had a regularly scheduled meeting at Crescent Landing with their staff, the palliative care people, and Danielle and me. In general we all agreed that things are going much better now than they initially were. He's adjusted well to the change. The big issue now is that he keeps peeing in the hallways. They estimated about 4 times a day. They've tried getting him to the bathroom every hour or two, but with little success. They're concerned about John's dignity, and they're concerned about cleanliness. They requested that we try some adaptive clothing - something he can't easily get out of. Danielle ordered something today that we'll try. They also requested that I bring some shoes that will be easier to get on his feet. I bought him a pair of tennis shoes with a built in shoehorn (that's how the sales person described it). Basically they have a firm heel so the shoe slides on and off easily. They're also a half size larger than his other shoes. Hopefully those changes will help the staff care for John with a bit more ease.

December 16, 2023

John was pretty tired yesterday evening when he was eating dinner. His eyes were kind of half open but he ate all of his food, albeit a bit slowly. When he was down to the last bites, I pulled his dessert into view - a couple of cookies. His eyes shot fully open at the sight and he immediately reached for a cookie and ate it. It was pretty dramatic and funny - and made me smile at life's pleasures that still bring joy.

December 12, 2023

John has been doing well at Crescent Landing. He's not as resistive to care so they're able to help him more, and he's much better with it. They're are also putting him in socks and shoes each day, so I'm happy about that. I requested that happen every day, expecially because he walks around all day so he needs safe and supportive shoes. I get calls from the Med Techs and Palliative Care Nurses a few times each week. And of course the staff updates me when I'm there (I'm there most days). Today a got a couple calls, but the last one was the biggie - the Med Tech called to say John had fallen and wasn't able to get up. They were concerned about moving him so they called 911. The EMTs were able to help him get up, but then he was unsteady on his feet, so they decided to take him to the ER. When the Med Tech called me I requested that they not take him. I was planning to head over there shortly since I was getting off work soon, so I thought I could check him out when I got there. But it was too late, he was already on his way in the ambulance. I called Danielle and since she's so close she went to meet up with him right away. The EMTs told John his daughter was there, and asked him her name. He said "Danielle"!!! That was really great. We joked that the fall knocked some sense into him. Danielle said he was doing fine so she spoke to the EMTs at the hospital and at her request the EMTs asked if she could sign him out of the ER. The Dr came and checked out John and he agreed that she could sign him out. So he was back at Crescent Landing before I could even get to the hospital! The definite highlight of the experience for him was that Danielle bought him a chocolate shake and he loved it.

December 3, 2023

There have been 3 days so far that I haven't gone to see John. Each of those days I was out of the area with friends or family. Today is the first day I didn't visit when I was available. I felt I needed a day for myself, a day to take things a little more slowly and get stuff done around the house. It's the first day I haven't rushed around in quite some time. It's been a good day. I continue to do some grooming with him every day. I brush his hair and teeth, trim his nails occassionally, shave his face. I wash his hands. I check to make sure his belongings are in the right places and that he has everything he needs. More often than not I visit while he's eating. I encourage him to keep eating and not get up and walk around. And if it's light outside we head out into the garden to get some fresh air. A couple days ago I got a bit insistant with the staff. John had sores on his knees so he fell hard at some point. They don't know when. I received a call from the palliative care nurse notifying me about his skinned knees. I appreciate that they're on those kinds of things. The aides have difficulty getting shoes on John. He resists it when they put on shoes and socks, so they've been putting slippers on him much of the time. Because John walks ALL day, pretty much except when he's eating or sleeping, he's got to be logging some serious miles. All that walking in slippers is ripe for falling. So I've made a stink about it now. At first nicely to a Med Tech, then the next day to the palliative care nurse, and then that night, more firmly to another Med Tech. I told them I wanted socks and shoes on him every day, without exception. He's been in shoes and socks since then, so I think the message is spreading to all the staff. Last night they had a tree lighting party - with cookies and delicious Mexican hot chocolate. It was delicious! I tried to get a picture with John in front of the tree, but he kept his eyes closed most of the time so the pictures weren't great. But it was nice event even though we missed the actual tree lighting - they did it a bit early and I was with John in his room. I think both John and I are adjusting to our new normal. I've probably said this already in this blog, but it has been like a death for me. It's one of the many deaths in this horrible disease. It's the death of our life together. It's the death of being together with some semblance of normalcy. I don't think I've cried so much about anything else in my life - during the time I was making the decision, then it was decided, then moving him in, and forging into our new routines. I'm not typically a person whose sadlness comes out my eyeballs (lol). I've read a lot about ambivalent loss in dementia. We mourn all these deaths, these losses that occur during the course of the disease, each one taking its toll in some undefinable way. But I feel like I'm crawling out of the hole of this most recent death. All I can do is keep moving forward, looking for the positives every day. Like getting ready for work without facing difficult conflict, and not arriving at work all strung out from the struggle. Or other positives like sleeping all night, and sleeping with both eyes closed because I don't need to spring into action at the slightest sound. And being able to relax and spend time with people I love. So I remind myself to focus on the joy.