Lately my mom has been talking about dying. About a week ago I was feeding her dinner and she said “I’m probably going to die tonight.” I said “You’d better hold off for a few days because we’re having your birthday party on Sunday!” Then last weekend she mentioned that she was going to die soon. I almost wonder if she might have a premonition. But she certainly doesn’t seem like she’s at death’s door so I think it’s the dementia talking. Or wishful thinking on her part. Or wishful thinking on my part because I know she’d never want to live like this. And she experiences no joy. On occasion we’ll see a quickly fleeting smile over a joke, especially if it’s a little crass. But she has no lasting interest in anything. Mostly she likes it if I hold her hand. And feed her cookies of course!
John continues to drive me nuts as moves stuff around all over the house. As fast as I put stuff away, he spreads it around again. Then he gets agitated because he can’t find what he’s looking for. I try keep all the important things in the same place so he’ll know where they are, but in a flash he’s moved them and I have to search around the house for them.
The other day he was in the shower, with the water running, and he started squeegeeing the glass shower door. I laughed out loud but was also immediately horrified. I usually have to remind him a few times to squeegee, and even then he usually misses big sections of the glass. But this time he did it on his own .... but since the water was running it didn’t accomplish anything!
Easter Seals is still going very well. John continues to like it there and it keeps him busy. He always comes out smiling. It’s perfect - - except for the crippling cost. I try not to think about that until the bill shows up in the mail.
Our youngest son Ben is moving with a friend to Texas this week. I know it’ll be a great experience for him, but it’s leaving me with a big hole in my heart. As our kids grow up, the things we worry about change, but we always worry. The worries get bigger, and we lose control. John can’t share those worries with me anymore, so they’re heavier. He doesn’t have any fatherly advice to give, and he can’t help me address the problems that arise. Thankfully I have very good friends who are always willing to help me, but friends can’t possibly fill the void created by John’s cognitive loss. Sometimes I have to purposely pause to remember the presence, the force John once was. For Ben, I don’t think he really remembers that person at all anymore. John’s loss started as Ben entered his teens. Now his dad is someone Ben needs to watch out for, when it should be the other way around.
So both our sons will be living far away, Tim in Japan and now Ben in Texas. Our daughters are close by and they are both very helpful. Jordan drives John to Easter Seals on the mornings when I leave for work before they open. She offers to switch her schedule to help out. She’s in law school so she’s very busy, but she helps whenever I need it. Danielle is my right hand. She helps me make every major decision about John and this disease. She goes to appointments with me, classes, support groups, and communicates with family members when it’s needed. She and her husband run their own business so they have very busy lives, but they both help whenever I need it. Danielle comes over and stays with John some days, taking him on errands with her, going to the movies, working from our house but keeping an eye on him. I’d be lost without her.
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