We need to know. We love to be certain. We like to expound and have others think that we know. We’d like them to be convinced that we know, we really know. We’re certain. We’re sure of ourselves. Confident. Positive. Strong. Part of Trump’s appeal to some is this. He knows everything. Believe me. Trust me. Do those who follow Trump relinquish their own ability to function in the world? To think for themselves? We all want to be right. It’s a natural tendency to want to believe you’re right and sometimes we fight really hard to hold on to that belief. Uncertainty makes us uncomfortable. If some overly confident self-promoter comes along do we always want to believe in him. The messiah? No uncertainty for us. Please. No more uncertainty. We can’t stand it.
The last night driving along 84, coming through Waterbury Suzy got confused. We’d been in the van for a long time. She used to live in Watertown. Her parents have lived in several houses down there, and so has she. She still has family there. She talked about it a little. Confusion about where you are. Who you are. Where you live. Where you used to live. Who you used to be. Where you’re going. There’s a line from the movie, The Matrix where one of the Agents says “He doesn’t know.” They’ve got Morpheus trapped they think, and I forget exactly which agent it is, but he’s been unplugged and is out of the loop and it really quite a creepy line- “He doesn’t know.” We don’t like to not know. Last night it happened again. Suzy didn’t know where she was. It was a very tender moment. We’d been home, she’d a long bath, with a glass of wine. We’d laughed and talked at expressed relief at being home. I got something to eat ready. We watched Rachel Maddow talk about Trump’s latest folly- they never end. We talked with our son by phone. It felt great. And snuggled up in bed, that oh so comfortable bed, with Hobbes contented, lying on the floor with his bunny and a pink slipper he’d stolen, a bit of rain starting, Suzy woke and asked where we were. Right. Long trip. She was confused. I told her, “We’re home. Storrs,” She didn’t get it. “The house we built. Where we’ve lived for 37 years. Where we raised our son. Remember?” Talk about uncertainty.
“Is this my parent’s house?”
“No, Suzy. Remember we built this place? You helped shingle it. You pretended winter was coming to make yourself work faster?”
It took a while. She got it. We’re home. Not in the van anymore. Not at her parents. It was more than just being sleepy. She snuggled in and said, “I’m scared.”
“I’m scared, too.”
“Yes. I don’t want to lose you.”
Suzy and I had just gotten back from a trip down to Florida in our van. Two weeks. Shorter than I wanted. We had to barge through the berm of snow at the end of our driveway last night and it was bit dicey at times getting down the driveway. Another week in the warmth and the sunshine would have been nice: Sanibel. Island, The keys. A little diving, and canoeing. Some surfing in Melbourne? I could have enjoyed that. Suzy was not enjoying the trip. The intrepid traveling partner I’ve had for so long was not there. She wanted to go home. She hated Florida when we were in Delaware. She hated the weather. She didn’t know what state we were in. She didn’t know what day it was. She didn’t know where we were headed or how long we’d been gone or why we’d come. She wanted to go home. And when we got home she didn’t know we were there. Yes, I was scared. Will there come a time when she doesn’t know who I am? Who Hobbes is? Who she is?
When I was younger I heard about Alzheimer’s disease and I thought there’s a useless worry. So you can’t remember things. Big deal.
Well I see it differently now. This trip helped open my eyes, and the tender and honest moment Suzy and I had gives me hope and insight. She’s fine now. She gave Hobbes a bath last night, has been doing laundry. We shopped together, had a hamburger with a Florida tomato we’d brought back on it while we watched the news. Trump? Oh yes, still up to his antics. There is no hope for him. He’s delusional, either by choice because he has figured out a way to make his life better that way or he’s just delusional. Distract people, confuse people, con people, get your way and barge ahead all the while explaining in that annoying voice with those annoying mannerisms. I guess people who like him aren’t annoyed. He seems to think that if he says something it makes it true. And certainly we humans do get lead down the garden path by people like him. I thought we were smarter. Some of us are. Is it the end of democracy? Is democracy going to drown in a sea of disinformation, misinformation. I guess we’ll see. Alzheimer’s of the nation. Too confused to act?
I know my course of action has to be different than Trump’s. I need to be quite patient. Suzy isn’t doing this on purpose.This is just happening. She needs love and understanding and friendship and fun and good food and music and dancing and travel and swimming and sailing and campfires and stories and movies and jokes and conversation just like the rest of us. And I’m her guide. And when I get discouraged, or scared it’s not good. I’ve got a lot to learn, and I’m on it. So where do we get our information? From the internet? Will some of you who read this blog comment and will I read those? Yes. Will I read articles? Yes. Books? Yes. Talk with people? Yes. Seek experts? Yes. How about prevagen? Television ads claim it helps the brain. Yeah, I like that. A creature with no brain ground up and put in pills to help your brain. You know, the reason a news show is an hour long now is so they can show you all those ads. And on the internet, same thing, right? Where the disinformation/misinformation campaigns start. The rumor mill. Lock her up. No, I will not be getting sucked in to that morass.
Our van trip was not as long or as joyous as I’d hoped, but we did have a lot of good times. I’m off the pity pot that I will admit I ended up on quite few times. There were moments- anguish? Close. But I got a lot of help. This great blue heron stopped by while I talked on the phone to Kenny and Debbie Peterson from Anastasia State Park in St. Augustine Florida. The weather had been quite cold. Suzy was upset. I was upset. I called Kenny to see if I could visit. He and Debbie were wintering in their RV in Flagler Beach, one of the resons we were there.We talked a long while. Debbie dad had Alzheimer’s. I’m new to accepting that Suzy has Alzheimer’s. It felt so good to talk. I felt less alone.
At tea this morning at home was wonderful. Suzy was chipper. We talked, and laughed and planned. We had another moment of frankness talking about Alzheimer’s. I want to be honest. I want to be open. I want her to understand that I will care for her and comfort her and love her and that our life has changed in some ways, how we may be selling Storrs, building on to our cottage in Owls Head to make a simple, suitable home to ease our life a bit. We;ve talked about it a lot. But our marriage is still the foundation of our lives. We’re committed to each other. It feels so good. Frank. Earnest talk. Then I have to go out to get to the post office before it closes to pick up our mail, and when I come back it has gone ugly. Suzy is bitter. She’s upset. Her answers are clipped. One word. Uh oh.
“You know your really hurt me this morning.”
“I can tell. I’m sorry. I didn’t mean to.”
We go back to our tasks. I’m making chicken Cacciatore for dinner. She’s sweeping the floor for the third time. I try to break the ice. “Do you want to help me make the cacciatore?”
“I have Alzheimer’s. I can’t do anything.”
I instantly regret my moment of honesty. I backpedal. I am surprised- flummoxed. “I…”
“I’m not drooling in my oatmeal. I have some memory loss. I’ve always been timid. I don’t have Alzheimer’s. You really hurt me when you said that.”
“I’m sorry. I won’t say it again.”
“I’m not drooling in my oatmeal.”
“No Suzy, you’re not.”
“You hurt me. What hurts me most is that you think I have Alzheimer’s.”
“I’m sorry. Do you believe that I didn’t mean to hurt you?”
It takes some time for the answer to come. “Yes.”
“Do you believe that I love you?”
“Yes. I love you too.”
Are we back to normal? No. There is no normal. This is the new normal. Finding two two pound bags of sugar in the spice cabinet. Not seeing the compost bucket and going to search and finding it halfway back from the garden in the back yard near the buoys that Hobbes plays with. Helping to look for her jeans that we “left in Florida.” Leaving her doing one thing which you think will occupy half an hour and make her feel good about helping out and coming back to find her having just finished giving the dog a bath, task forgotten.
So we got these mood swings on the trip. My god it was good to see Kenny and Debbie and Kenny’s brother Billy and his wife Jackie. We talked and talked. Around the campfire with Sue from Newington, and Mark, and friends from New Brunswick and fellow campers. Telling tales, rioutous tales about the laundry. Jokes, Comaradery. Suzy enjoyed it, too. Company is good for her. It was hard to leave. Kenny and Debbie are off to Bryce Canyon for the summer very soon where they will be camp hosts. We said our goodbyes and thanks. The next morning was warm. We hung around basking in sunshine, made plans to run for Ginny’s in the Villages to see her and my sister Claudie. but first, we had to have a swim. We went to St. Augustine beach and had a glorious swim. A little cool: the wind- the water is mid 60’s. We both love it.
Suzy and I drove down following what my phone said to do along gorgeous back Florida roads, to my sister Ginny’s place, and Claudie was there, too. I was almost overwhelmed when I saw Ginny and Claude walk out of the house. Some family. Some friends. Very nice. We enjoyed a fantastic time talking with Ron and Claude and Roy and Ginny, eating pizza, having a beer. Then desert. Pumpkin bread my sister Claudie made with ice cream and whipped cream. Heaven. For Suzy? For me.
Roy’s gotta go golf.
Then we had a few days on our own. We stopped for a beautiful swim in Crystal River at Hunter Spring. something about 70 degree water in March is very nice. Suzy prospers. Then off to our reservation at Sunset Isle RV park in Cedar Key Florida, where we had three great days/nights. Tht top photo is the sunset on our arrival. Warm weather, pot luck supper, a music jam where Suzy chickened out of playing her guitar, but came up front two times to sing with us and I played the fiddle. The next night day a canoe ride out to a key,then a sunset fiddler at a bar for two hours. We drank beer and danced and listened and laughed and walked back to the van happy. Then the third night, just back from a swim at Rainbow Springs, a concert at the RV park where we danced eight or ten times to oldies with Hobbes right there, once on the dance floor, but mostly being tended by other campers. Nothing short of awesome- for Suzy, too. Not just me.
Then it is time to head. I promised Suzy if she was not happy after our reservations were up, we’d head back. So we did. Off to Knoxville, by way of Thomasvillle Georgia. I love driving these new roads. Monticello, Florida.
This is a gorgeous town on route 19, out toward the panhandle end of things. I am eager to get back.
Why not stay? Why not explore while we’re here? Because we can’t. We have to head home. Suzy is happier when I tell her we are headed home.
Knoxville with my brother Joe and his wife Phyllis and their daughter Stacey, and granddaughter Ariel. It again felt sooo good to be with family. here are Suzy and Phyllis and Joe on their boat dock where you can sit on the boat and feel like you’re boating because the Tennessee River is flowing by at four knots. Joe says, “With a gin and tonic in your hand it’s cheap boating!” Right at the dock. No fuel, no steering needed. Just sit and watch the water flow. And he can almost see his boat from their condo.
We go out for ice cream and Joe and PJ are talking about dinner the next night at a cool Mexican place, but when we go out for ice cream I tell Joe that we had better leave. Suzy has asked four or five times where Hobbes is in the last fifteen minutes. We have to run for home. We had a great visit, but it is time to boogie. And so we do. The next morning. Late, but we head north.
It’s not over. I like driving. there are moments driving, say cruising down route 17 in North Carolina, almost no traffic, and you get an absolutely wonderful feeling. Like Sailing. Almost. I mean not as fun, but that feeling of freedom, of escape from the routine, of just floating, of getting somewhere sort of slowly- even if it is 65 miles an hour, with scenery unfolding before your eyes, with your dog on the floor next to your and Suzy beside you knitting a patch for the favorite sweater she made me thirty years ago is pretty nice. Or route 19 North out of Florida and into Georgia. Or even on the interstate rocketing along at 70, with Enya blasting on the CD player. Making our way back home. Even the sight of a Confederate flag flying proudly on a distant hillside doesn’t completely break the sense wonder, of amazement.
We drive. We make miles. We look for lunch. Great Mexican place at exit 17, route 81, just into Virginia. We use our phone to make a reservation. We rock out to our favorite CD’s. We listen to the radio. Some interesting guy about what scarcity does to your brain an deciusion making. Scarcity of money, scarcity of time. I missed the part about what the other end of the spectrum does to you: excess, the billionaires; we drove out of range. We camp we shower, we cook in the van, we sleep, we get up, we walk Hobbes, we make tea, we eat breakfast, we pack up, we make some miles. We’re in Pennsylvania. It feels like home. Only 250 miles to go. Fuel and food, so we can just drive.
This place was awesome!
Suzy divijng into a chili dog. Super Gyros. Near Bethlehem, off 78.
And we drive. And think. You see things. You get ideas. You change. slowly. You think about life differently.
You get home. And it feels good. Life with Suzy.