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.