Acclimating to Dementia: 12/12/12

We rode together in the car today. Casper didn’t want to stay home alone again. I had to work, and it was a long day. Mid way I stopped home and she rode for the afternoon with me as I saw patients, waiting in the car as I went inside each home, before I was off and running into the night for more appointments. I don’t want to be gone so much, but things need to be paid for, and work pays the bills. And it’s Christmas after all. There is more that needs to be paid for.

The weather is gloomy. That’s never a good thing at our house, for anyone. Especially at Christmas. SADD is a part of our lives, and at the holidays the kids miss Linda, desperately. I do too. Casper misses her parents, and her brothers, and her aunt. I miss Dad. And Linda's parents. And some of you wonder why Hawaii is in the plans for long term? There is sun and there are rainbows there right now. Clouds last a few hours, not for the next seven days. At our house the losses are literally on our walls. I love family pictures, but now many of them are those we miss, not those we still see. My dad. Mari, Especially Linda. Casper’s family. We didn’t know them, but I know she misses them.
So today we were in the car. “Hon, how about you help me with the family dinner Sunday? How about we fry chicken and make pineapple upside down cake and hush puppies?” “No, I don’t think so.” “But you used to like to make that. Your sisters sent the recipes. It was yummy. Your coleslaw makes Chloe so happy.” “I don’t think I can.” “Why?” “I don’t know?” Huh? What? “Can you describe that so I can understand it?” “No, I just don’t think I can or want to.” “But why? You used to. We had fun…” “I don’t know. It’s not there anymore.” “Where did it go?” (Yeah, I am brilliant like that sometimes. And they licensed me to be a therapist. Who knew?) “I don’t know. I can’t find it in me anymore.”

And there it is. Dementia in all its ugly rawness. Casper simply isn’t her anymore. Last week there were two days where she was who she was. She smiled without thinking about it. She made a few jokes. She laughed. She remembered all of us and our activities. She pulled me close. And then, just as quickly, she was gone again. Replaced by the Casper who wants so much to connect, and who will act the part with others to make them feel she is still here. But in the car, on long drives, you can’t avoid the reality. It’s not fun to cook if you can’t remember cooking and might leave the stove on. It’s scary to be downstairs when there are candles burning because you are afraid they will burn the house down and you know you are the only one afraid. You wish, desperately, that instead of being outside in the car waiting on your partner you were in that house being the hospice nurse- especially when your partner is complaining about the actual nurse and knows if you were the nurse those complaints would not occur because you were a damn good nurse. Only now you can’t remember the meds your partner is discussing.
So when your Jill is trying to cajole you into cooking dinner, you agree to a family dinner out at the Spaghetti Factory so you do not have to admit you can’t remember the recipes. You do only part of the laundry because you can’t remember what goes in the dryer and what hangs dry- or else you hang dry everything just so you don’t make a mistake. And you wish your partner would quit working so much and come home earlier so you still feel important. Because you are. But sometimes, you can’t remember just how important. You can't remember how many times you have been told that today- you look at your phone and you don't see there are messages, or answer sometimes, because the phone you used to use all the time just does not make sense anymore.

Dementia may be stealing you sometimes. But not from me.