We had a great time in Hawaii. Waves, whales, sunsets, birds on the lanai, our wedding, friends nearby, and total relaxation. There were moments I recognized the confusion, but Casper can cover it so well, and I so wanted to see it covered. Maybe, just maybe, things are better? Please?
There were moments. The day we were going to Sheri and Dan’s vow renewal. Casper got out her best dress pants, dress shoes, and the shirt we’d decided she would wear to our wedding. “Why do you have those out? It’s sprinkling a bit. Maybe your striped shirt and jeans?” “Aren’t we getting married today?” No, babe, that’s the end of the week, not today. That’s at sunset, not in the morning. My hair is down and I’m in shorts. Can you see the cues? Please see the cues so I do not have to explain. That’s so hard…
Today is Monday. We are getting married Thursday. The last day we are here. 1/31/13. Remember how we talked about the date looking alike? Yeah, no. You don’t. That was my conversation. It didn’t sink in enough to be yours. How do I cover this so you don’t feel out of it or stupid? “No, baby, we get to have a sunset. I wanted turtles, remember? For Linda?” A look of relief, a cover.. “Oh yeah. We are… a different day. Right?”
Waking up, and finding the sliders closed, the surf shut out. “Why is the door closed?” “It was so loud. Why is it so noisy?” That’s the ocean. That’s where the whales are that you love so much. I LOVE the sound of surf. I would sleep outside at the beach if I could. Now it is “noise” for Casper, who at night does not understand the sounds she is hearing.
We are headed to the airport. The route on Hawaii 30 is delightfully distinctive. Open beaches. Whales. The section with the trees over the road, next to the beach. It’s unforgettable. Unless you have dementia. “Why is this taking so long? We should be at the airport by now.” “No, babe, remember, we drove here before. You loved how pretty it was. You and I talked about North Caroline and Florida. It was like there. Remember?” A look of confusion for the briefest of moments. “Yes, I remember.”… “You don’t, really do you? This is all new to you right now, isn’t it? Tell me the truth, please.” … “Yes. I can’t remember any of it.”
Then there are the moments I see you again. The rough flight, where I grab you hand when I am scared. You grab back, and look at me and calm me down, just like old times. The airport, where this side of the trip you are ok and can manage to wait without getting agitated.
Then we are back in Riverside. The next day you growl, in a not pleasant way. It scares me. I have never, ever seen you look at me in anger. You keep to yourself all day and all night. Maybe working was a good idea today, because you are not you today. My Casper would never ever even look at me in an angry way. Not ever. We have an understanding about it, and you have always kept your promise. But today, all of a sudden, you are not , well, you. And you know it. When I ask, you say “Not a good day Babe. Please, just let me be. I don’t understand me. I don’t know what is me.” I keep my distance. And for the first time dementia is scary to me in a palpable way.
But Sunday dawns and you are up for church. You volunteer to help with Coffee Hour, which you call “Snack time.” You actually remember Sherry and Tracy’s names. You can find your way around the building. I relax. Maybe the bad times are over. Maybe it was stress and jet lag. Please?
We go see Charlotte. One of your fans at church. One of the people who never ever calls you “Linda.” Who loves you for you, and for us. We are visiting. She and I are talking. Suddenly, you interrupt the flow. You are scared. We can see it. The calendar. “Wait- it’s 2013????” … “Yes, babe, for over a month now.” “But it can’t be. My license is expired now.” What? Now I am the disoriented one. License? Expired? “Give me your license.” I look. Your birthday is in late December. You remembered. Your license does expire- in ten and a half months. “No, look. You are ok.” Charlotte chimes in, despite pneumonia “You can still drive. It’s ok.” You look so upset. We all three know what just happened. We all hurt for you, for us, for what is coming.
We see the doctor today. “How are you?” What can we say… You start to say this isn’t working. You need help. You stop. I step in. The year. The road… the everything. The fear of being angry of showing me a new mood and new you we do not know. The plea for help. The helpless look on our doctor’s face. The recognition that whether this is Parkinson’s or Alzheimer’s or whatever, it has changed our world. Our future. Our us. So I step in- We can get back to Maui in December for half price. Her jump- do it. Now… before it’s too late.
There were moments. The day we were going to Sheri and Dan’s vow renewal. Casper got out her best dress pants, dress shoes, and the shirt we’d decided she would wear to our wedding. “Why do you have those out? It’s sprinkling a bit. Maybe your striped shirt and jeans?” “Aren’t we getting married today?” No, babe, that’s the end of the week, not today. That’s at sunset, not in the morning. My hair is down and I’m in shorts. Can you see the cues? Please see the cues so I do not have to explain. That’s so hard…
Today is Monday. We are getting married Thursday. The last day we are here. 1/31/13. Remember how we talked about the date looking alike? Yeah, no. You don’t. That was my conversation. It didn’t sink in enough to be yours. How do I cover this so you don’t feel out of it or stupid? “No, baby, we get to have a sunset. I wanted turtles, remember? For Linda?” A look of relief, a cover.. “Oh yeah. We are… a different day. Right?”
Waking up, and finding the sliders closed, the surf shut out. “Why is the door closed?” “It was so loud. Why is it so noisy?” That’s the ocean. That’s where the whales are that you love so much. I LOVE the sound of surf. I would sleep outside at the beach if I could. Now it is “noise” for Casper, who at night does not understand the sounds she is hearing.
We are headed to the airport. The route on Hawaii 30 is delightfully distinctive. Open beaches. Whales. The section with the trees over the road, next to the beach. It’s unforgettable. Unless you have dementia. “Why is this taking so long? We should be at the airport by now.” “No, babe, remember, we drove here before. You loved how pretty it was. You and I talked about North Caroline and Florida. It was like there. Remember?” A look of confusion for the briefest of moments. “Yes, I remember.”… “You don’t, really do you? This is all new to you right now, isn’t it? Tell me the truth, please.” … “Yes. I can’t remember any of it.”
Then there are the moments I see you again. The rough flight, where I grab you hand when I am scared. You grab back, and look at me and calm me down, just like old times. The airport, where this side of the trip you are ok and can manage to wait without getting agitated.
Then we are back in Riverside. The next day you growl, in a not pleasant way. It scares me. I have never, ever seen you look at me in anger. You keep to yourself all day and all night. Maybe working was a good idea today, because you are not you today. My Casper would never ever even look at me in an angry way. Not ever. We have an understanding about it, and you have always kept your promise. But today, all of a sudden, you are not , well, you. And you know it. When I ask, you say “Not a good day Babe. Please, just let me be. I don’t understand me. I don’t know what is me.” I keep my distance. And for the first time dementia is scary to me in a palpable way.
But Sunday dawns and you are up for church. You volunteer to help with Coffee Hour, which you call “Snack time.” You actually remember Sherry and Tracy’s names. You can find your way around the building. I relax. Maybe the bad times are over. Maybe it was stress and jet lag. Please?
We go see Charlotte. One of your fans at church. One of the people who never ever calls you “Linda.” Who loves you for you, and for us. We are visiting. She and I are talking. Suddenly, you interrupt the flow. You are scared. We can see it. The calendar. “Wait- it’s 2013????” … “Yes, babe, for over a month now.” “But it can’t be. My license is expired now.” What? Now I am the disoriented one. License? Expired? “Give me your license.” I look. Your birthday is in late December. You remembered. Your license does expire- in ten and a half months. “No, look. You are ok.” Charlotte chimes in, despite pneumonia “You can still drive. It’s ok.” You look so upset. We all three know what just happened. We all hurt for you, for us, for what is coming.
No comments:
Post a Comment