October 29, 2023

John has been at Crescent Landing for 8 days now. The move-in went as well as can be expected. We set up his room, got him all situated, hung out with him for a while, then said goodbye. I gave him a kiss on his cheek and he kinda pulled back with a smirk on his face that seemed to say "What the heck are you doing kissing me?!" Since he doesn't know we're married I believe he sometimes thinks I've crossed a line and have done something inappropriate. I've spent time with John every day, and he's had a lot of visitors, so that's been great. However, he isn't sleeping well. Some nights he doesn't sleep at all, but wanders around all night. Other nights he sleeps for a few hours, then gets up and starts pacing. He's slept all night only 1 night that I'm aware of. So some days he looks pretty ragged with exhaustion. At home I was forcing him to lie down in bed, sitting on the side of the bed so he couldn't get out. And when I got more desparate, I'd put my pillow on his arm and sleep on it so he couldn't get out of bed. But clearly the staff at Crescent Landing can't do that! The other issue is that he refuses to shower, change his clothes, brush his teeth, etc. So when I go there I change his clothes when he needs it, I brush his teeth, and shave his face. Danielle and I met with Crescent Landing and Geiss Med on Friday (that's the palliative care group that provides medical assistance for him there). They recommended that we add a mood stabilizer so he's calmer and less agitated. We agreed, provided the dose is low enough that it doesn't make him too drowsy or unsteady on his feet. He hasn't started the med yet though, probably tomorrow. I've explanined to a number of different caregivers there that I've been forcing John to do the ADLs (activities of daily living) for some time now. He gripes and resists, but generally allows the task to be done. I think they are concerned that John may become violent with them. That's not unreasonable. I remember my mom hit the staff sometimes when she was in Memory Care. John is about 15-20 years younger than most of their residents, and he's stronger than probably any of them. I'm pretty sure he's the youngest person there. I've assured them that he's never been violent before, but I can imagine that it would be a concern when they don't know him well yet. They don't force residents to do things against their will. Of course they do if it's necessary, like when someone really has to have a shower, but in general they don't force the residents to do things. So if John resists brushing his teeth, they're not going to push it. Where I sort of push him against a wall so he can't easily get away, and shove the toothbrush in his mouth. The bottom line is that the behaviors they're seeing are the same things I was dealing with. I assume it's worse for them though because they don't know him yet, and he doesn't know them. Add a terrible lack of sleep to the mix and it's even uglier. They're having a difficult time caring for him. I get it - I have too! One other thing - for the past 3 days he's been leaning to the left. The Geiss Med nurse paid him a visit to check it out, and she thinks he may be dehydrated. I see him drinking fairly well, but with all his pacing I suppose it's possible. And maybe he drinks more when I'm there. So it's been a very difficult week. I know it's an adjustment period for John, and for the caregivers at Crescent Landing, and for me too. Hopefully things will calm down soon. Change isn't easy for any of us, but even more so for someone with Alzheimer's Disease. Hopefully John will become more comfortable quickly.

October 20, 2023

Well yesterday I was feeling stronger, but today....I was a shit show. I cried on and off all day. It was John's last day at EasterSeals. We brought donuts as a small thank you to the staff. The last drop off was tough. Then when I picked him up, the director walked out with John and Edna. The director gave us flowers and said she sent my 'resignation' letter to her superiors so they would read my praise for Edna. I gave Edna a gift - a necklace to remind her of John. She plans to move to Australia next year to live with her son. I wrote her a long note in a card in a lame attempt to express our gratitude for all she's done for us, and to express the love we have for her. I wish she and John could have known each other when he was himself. Work was a tear fest too. One friend gave me a necklace that signifies strength and new beginnings. I love it. Another friend gave me a nice bottle of wine and a bouquet of flowers. So thoughtful. They bought me lunch. And people dropped by my desk all day to show their support for me. It was really something. People can be so kind and thoughtful. I took John for a haircut after work so he'd be all fresh and clean for tomorrow. He had a difficult time and I had to hold his hands throughout, and held my face next to his to try help keep his head steady while they gave him a shave. I felt a bit sorry for the young guy who gave him the trim, but he was a trooper. I've tried to explain what's coming to John throughout the week. He doesn't understand. He's used to me dropping him off at EasterSeals so I hope the familiarity of that transition will calm him in the next days and weeks. And I hope tomorrow goes well. Now I'm off to bed - it may well be the last time we spend the night together. What a ride its been! I'm choosing to focus on our blessings.(She writes as she cries...)

October 19, 2023

It's only 2 more days until I move John into memory care at Crescent Landing. We were there tonight signing (many times) the 66 page contract. They did say that although he'll start out in a shared room (his roommate is bed bound or in a wheelchair) there should be a single room available in a month or two. Last week I cried at the drop of a hat, but this week I've been a bit better. I still feel guilty, sad, relieved, afraid, sad and more sad. For me it's another death in the journey of Alzheimer's. It's one more way the disease steals from us, steals the life we wanted and planned for. I've been working through my to do list to prepare for the move. Basically I've focused on moving forward and making progress. This decision was agonizing and I've been thinking about it for months, and thinking about it more and more often as the weeks rolled by. It signals the end of our lives living together. It's the end of spending so much time together. But I'm looking forward to having a healthier relationship with John. I'll be his spouse again, not relentlessly his caregiver. I'll have help with the heavy lifting, and I'll be able to be with him without having to annoy him by taking care of his every need. About a week ago John fell out of bed and pulled the heavy night stand on top of himself. I tried to lift it off of him, but he wouldn't move his legs out of the way so I was stuck holding the furniture. Fortunately Ben heard the loud noises and John's yells for help, so he ran up the stairs and grabbed the furniture so I could move John's legs. The Ben lifted John off the floor and into bed. Ben also rescued us yesterday morning when John and I were fighting in the garage. John refused to get into the car so I could drive him to EasterSeals and then go to work. John planted his legs on the ground and his arms on the top of the car doorway and was completely immovable. Finally we went on a very short walk to the driveway after which John walked up to the car and got in like a completely cooperative person. That battle lasted 15 minutes though and I was quite late to work. So we have 2 more nights together. Then so much changes. We agreed about this years ago. I know John would support it. I will visit him most days and hope others will visit too. Everyone is welcome. We can drop in at any time of the day or night. And of course I can take him out with me whenever I want. I'm praying the transition is better than I fear, and that he adjusts relatively easily. And hopefully I will too.

October 7, 2023

Today I paid a deposit on a memory care facility for John. It's called Crescent Landing at Fullerton. We plan to move him there in a couple weeks. The timing is based on what works for my and Danielle's schedule, and she's unavailable most of November. Suddenly October seemed best. I know some may disagree with my decision, but they are welcome to take over if they like. John was diagnosed with Alzheimer's Disease 6 years ago. I've been unable to leave him alone for 4 years. He's been in day care at EasterSeals for all that time. They do not believe that he is appropriate for their program anymore and have told me to pursue other longterm solutions. And his caregiver there is ready to retire but has been waiting for me. I feel conflicted and very sad about moving John into memory care. But I have the full support of our kids who actually wish I would have done this already. The bottom line is that his care is very difficult and I'm bone tired taking care of him, especially while working full time. While him peeing on me earlier this week was jarring, it's the lack of sleep and the constant need for vigilance that is taking it's toll. John gets out of bed at the very least a couple times per night. Sometimes a lot more. When I get him back to bed I have to force his legs up onto the bed and then I sit on the covers to trap him in bed. I stay there for maybe 10-15 minutes each time until he settles down to sleep. Then I crawl back into bed so I can sleep. Sometimes he sleeps for a while, other times he pops right back out of bed so the cycle begins again. The vigilance I referred to must be constant. As he paces around the house he might turn on the water faucet and leave it running. In the kitchen he tries to feel the hot stove and plays with the gas knobs. A few times he's tried to eat the caps off water or juice bottles. He digs around in the pantry and leaves the refrigerator doors open. When we're in the car he sometimes opens the car door - so far not while we're driving. I think that while we're stopped at a traffic light he thinks it's time to get out of the car. Anyway, all I know to do is to keep moving forward. I'm working on preparing all the things he'll need. I moved to slowly and of course just missed the chance to get John a private room, so for now he'll share a room. He is first on the waiting list to get a private room when one opens up. I also set up appointments this past week to see if John would qualify for palliative hospice care. He does. Palliative hospice care is not end of life hospice care. What it means is that the medical group will take over his medical needs, but they don't do any proactive care. The focus is on comfort care. Palliative care is the only way that Medicare covers a few items needed in dementia care. They'll provide a hospital type bed for his room, so I won't need to purchase one. They'll also provide diapers, wipes, chucks, and shower him twice per week (Crescent Landing will provide additional showers). A doctor will check in on him weekly and manage his medications. A chaplain is also provided. We had similar care for my mom when she was in memory care. It's very convenient that doctors come to the patients rather than taking the patients to the doctor. So that's where we are. Our lives will look very different in a couple weeks. And I'll be spending time at Crescent Landing with John. Years ago we talked about this kind of arrangement, and John was in full agreement. I am confident he would support it. But it still makes me sad.

October 4, 2023

I woke up a while ago to find John standing next to my side of the bed. I'd fallen asleep with my hand on him so I'd know when he woke up and got out of bed. Well that didn't work. He got up without waking me, wandered over to my side of the bed, and peed on the bed. Peed on me! So I'm washing a ton of bedding in the middle of the night. I guess it's good news that the duvet and I soaked up the urine because the mattress is dry. The carpet is a little wet but not too much. But I was wet, the sheets were wet, and the duvet was wet. And John continues to pace around the room now. I've forced him back into bed but he kept trying to get out of bed. Finally I got up to throw a load into the dryer and he immediately got out of bed and started pacing. Another event last night - after work we stopped at target to pick up a few things. I decided to try something on and brought John into the dressing room with me. Of course single people were using the 2 family dressing rooms so I brought John into a smaller dressing room. He seemed agitated and started to undo his belt - I think he thought we were in a bathroom and he was going to pee in there. So we hustled out of the store as quickly as possible. Oh one other thing - he started talking to one of the mannequins in the store. Good lord we're a sight! Back to the pacing - Edna said he's been pacing a lot more at EasterSeals and suggested I resume the daytime dose of seroquel. The increase of the pacing has caught the eye of the director and she asked Edna about John's behavior. Recently I've been giving seroquel to him at night only because it helps make him drowsy. So I'll resume the daytime dose to see if that helps. Maybe getting him back to his full dose will help. It's hard to know if behaviors are related to medication or if they're just part of the disease progression. John was often pacing before I reduce the medication, but it's definitely worse now. In other news, I canceled John's phone line and gym membership this week. He lost his phone a couple months ago and it hasn't magically shown up, so there's no need to pay for the phone line. He doesn't know how to use a phone anymore, but I've used it to track him. But apart from EasterSeals he's rarely separated from me so the tracking isn't much use anymore. As for the gym membership, it's been a really long time since he's used that. I'd basically forgotten about it. His membership fee was crazy low because the membership rate goes back to the 1980s I think. Still, those things, the phone line and the gym membership, they're part of the many deaths involved in this disease. They're the little things that make up the incremental deaths of Alzheimer's Disease. In my dementia support groups (I'm in 2) we talk a lot about the toll the disease takes on the caregiver. It's not just the person with the disease who suffers, it's the whole family. As the disease progresses, the caregiver's world gets smaller. That's definitely true for me. I'm very limited in the things I can do, and I don't get out much anymore, or do the things I like to do. In the support groups we talk about how, as time drags on, the years of trauma changes our biochemistry. We have to actively prevent ourselves from declining with our loved ones. But that's far easier to say than it is to do. The bottom line is that the caregiver's well-being is just as important as their loved one's well-being.