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.