Tag Archives: Alzheimer’s

Persephone finally digs herself out

26 Apr
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Cellar hole, South Kingston land trust trail, January 2015

I realize I haven’t written here since December. I have had many adventures this winter in which I shoveled snow, shoveled more snow, ran in snow, worried about ice dams and the weight of snow on the barn’s roof, slipped and fallen in snow, and driven in snow. The snow didn’t stop until… well, we had a few flakes last week, and it’s April.

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…and then the snow came, in February.

But it *really* stopped in March. And although I did get out there and run in the stuff, I slowed down some this winter.

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A beautiful winter run in Canonchet preserve. Farm field and woods. January 2015

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Curious monkey with Mister Monkey, coldest run ever. 2015.

Part of it was that I did not have a specific race I was training for. Despite my perhaps overly-ambitious plan to run the 80 mile North South Trail in June, I didn’t have any marathons on the calendar. I signed up for the Quonset Point half marathon because it was cheap and it was going to happen on my birthday. For the most part, Tom and I spent our winter hibernating, and running some.

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Farm scene, Kenyon village, February 2015

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Headstone, Kenyon village, February 2015

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Monkey done. No more snow, please.

Around mid-March, we learned that my Dad was not doing well, and so I made plans to get to North Carolina. We all scrambled to get there. My Dad’s reputation of being hardy and history of bouncing back made me slightly doubtful of all of the hubbub, but then I got a second call that my plans better be firm. I flew in on Wednesday, March 25th. In some ways, it was like a reunion, because all of his kids were there. We got to spend three long days talking, singing Beatles and Simon & Garfunkel (badly), and eating my mom’s wonderful dinners. My Dad, Bill Janes, died on Saturday morning, March 28th.

My Dad.

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Two artists sketching. Christmas 2014.

I could wax poetic about my father, what he did, what he meant to us, what he MEANS to me, how fair and wise he was, how giving and courageous and curious he was (he put the curious in Curious Monkey) and what a lover of justice, the environment, and family he was. He has many fans. I’m not sure I have the words. He was just a really cool guy. He was tough when he needed to be. He liked to hike and run. He loved being outside. He loved his kids and grandkids. And his dogs. He loved to eat. He loved my mom.

The day he died, we were all there. He was home. It was sweet and sad.

After being pretty much cooped up in the house for three days, we all kind of burst forth into this sunny day. I took my rental car and went for a run in Blue Walls Preserve.

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It was hard. Lots of climbing. But it was beautiful and that’s what my dad would have done, if it were him in my running shoes.

He left a wonderful legacy, and he also left us all with a tremendous chest cold. I spent the next three weeks with the worst cold I have had in years. I am still not over the cough.

A week after he died, my grand-niece Diana was born. I still haven’t seen her because of my cold. I intend to make a trail animal out of that kid. Lily and Jake are great parents so far and I am so proud of them.

When I say I didn’t make plans this winter, I was a little bit lying. I DID put myself on two waiting lists for trail races. Right around the time that Dad died, I found out I was going to be running both the TARC (Trail Animals Running Club) Spring Classic Trail 50K, and the 21 mile Wapack and Back (without the “and back.”) I was happy, because it meant I finally had a goal, but I couldn’t seriously train until the cold let up. Maybe the cold was a physical way to grieve. I don’t know. I did get on the bike one or two days. And out on the road I went. Eight miles here, three miles there. The week I got back, my good friend Georgia got me out for a 24 miler on the East Bay Bike Path. It was a glorious sunny day, with a high wind. The birds were singing. I thought about Bill, and had a moment where I fell apart. Like a passing shower, I recovered quickly. Just one little bird did it.

Then, on April 12th, I ran the Quonset Half Marathon put on by Ocean State Multisports for my birthday. It was a great day and I felt strong despite the chest congestion and coughing. I finished in two hours, and of course, had wonderful birthday cake that evening to celebrate. The following weekend, my friend Georgia invited me to run the More Half Marathon in New York City with her. My friend Bonnie from work loaned me a RISD Road Kill jersey, which I wore to both half marathons.

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Georgia and I had a great time in the city. I saw my childhood friend MLE in Brooklyn. We had dinner and many smootchie moments. She was a little bit Janes kid growing up and so it was nice to celebrate Bill’s life with her. The next day, I ran central park. And once again, coming up over a hill and seeing the dogwood in bloom, I had a passing shower moment. Just utter, gut crunching sadness that passed almost as soon as it came.

Since I was running for Georgia’s daughter, who had hurt her knee, we kept the pace light, and even ran with Ang the last mile. We finished in 2:14.

Going from a season of “signed up for nothing” to race almost every weekend, yesterday I did the TARC Spring Classic 50K. This endurance run takes place in Weston, Massachussetts. Tom and I had been here before when volunteering for the TARC 50 and 100 miler, a few years ago. We arrived bright and early, and dragged my gear from the car to the fenceline by the horse area. I wasn’t nervous. I have gotten my share in of longer trail runs and like I said, I wasn’t afraid to get out and run in the snow. But I hadn’t run all week due to a little pain in my hamstring. The day before, I had ridden 41 miles on the road bike, hoping that would give me some warm up for the owie hamstring and serve as my “back to back” endurance effort I needed in preparation for the North South Trail in June. I had a goal time of six hours, thirty minutes. It was about 40 degrees at the start, a bright sunny day promising temps in the 50s by the afternoon. I was a little over-dressed to start with, and didn’t know too many of the other runners. I did get to meet a woman from TARC who deals with their merchandise. She was super friendly and helpful, and I couldn’t help but buy a TARC jacket. I went out on lap one wearing the jacket. It would come off by lap two.

First lap, I went out conservatively, in the herd, running slowly, stopping occasionally when everyone else ahead of me stopped. Things thinned out about mile two. The course was delightful. Not a lot of rocks and roots, like Rhode Island, but a lot of leafy lanes and doubletrack. Some good hills. A lot of turns, all well marked. TARC puts on a good race. As I came in from lap one, I knew I needed to take off some clothes, and maybe fix a bunched sock. So I did that, and ate, and went to the porto-let, and all in all spent far too much time at the snack table.

 

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TARC Spring classic trail map

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TARC Spring classic, in my head.

 

Second lap was hard. I was alone, having lost a buddy who had been chatting with me and telling me stories. I was mostly alone, and failed to recognize where I was, so everything seemed longer. I knew from the first lap that there was this last.   left.   turn.  It came right before the finish, and it was followed by a little climb, a drop, and then an exit onto doubletrack that led straight to the finish line. I could not wait for that left turn. Where is it? Maybe I went the wrong way. Come on. Where’s that turn. Where’s that f**king last left turn??? A right turn. Another right turn. A long straightaway… some singletrack with some stones, rocky, rooty, muddy, hop a creek, another right turn. Another straightaway. And finally… The Last F**king Left Turn.

Third lap, back out. I took less time at the aid station. Time was cooking. I got in to a groove, and reconnected with my buddy Pete. Pete was from Massachusetts and works as an IT guy, and comes from a big family. His sister is an artist. Hearing all of these stories, lap three really flew by.

Lap four, I lost Pete, and was on my own again. But there was a group of marathoners who were finishing up their last lap, and they were having a trail party. They sat on my heel, which was fine, entertaining me with their talk. I kept my pace even and tried not to think too hard about my hamstring. I caught up with Pete at the end of this loop.

My fifth and final lap, Pete and I agreed to stick together to make it more bearable. Everyone was tired. The half marathoners and marathoners were for the most part done, so it was quieter out on the trails. We ran with Brenda, a Trail Animals regular, and she kept us talking and alert throughout. Tradition dictated I “say goodbye” to different trail features as it would be the last time I would be seeing them (until next year.) Goodbye steep hill. Goodbye lovely farm. Goodbye ferny glade. GOODBYE LAST F**KING LEFT TURN. I didn’t think about my dad during the race. Each of my loops was maddeningly consistent: 1:15 with 2-5 minutes at the aid station. I finished with a time of seven hours.

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Finish line, 2015 TARC Spring classic. Smiling because done.

I hugged Brenda and Pete, and then invaded the aid station. M&Ms, oreos, fig newtons, cheetoes, leftover potatoes, corn chips, half an apple, an orange, a snack bar, two cups of straight coca cola. The last of the runners were coming in, and we cheered for them. The two guys in kilts. The determined last runner. We all sat or stood around, on tarps, in chairs, or changing to fresh clothes. Finally, Tom and I decided to hit the road.

As we pulled up Bell Schoolhouse Road, Tom pointed out the great blue heron alighting from a pine tree at the base of the hill. Suddenly, the seven hour day gave way and I choked on a sob, and had another passing shower where I was filled with such loss and sadness that my Dad was gone, and I would never see him again.

It was over before it started. Winter seems endless. We await that final F**king left turn. A bird takes off. Something pushes through the earth and blooms.

 

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In which the Captain breaks the pen

27 Dec

The day after Christmas, spent quietly, for the most part, in my Dad’s world. How can I describe this place? Pieces of Bill, yet there, surrounded by fibrous webbing of garbledygook, intoned as if with complete clarity, so one is forced to nod in agreement even though one is not quite certain what one is agreeing to. He was on today. Because I was the last one left in the room, I became the one who was responsible to make sure he didn’t harm himself. He is like an overgrown toddler with a thousand years of life experience. It is disconcerting and yet under it all, there is a hint of jocularity. He likes to have fun and be silly, especially when I, the caretaker of convenience, take my job too seriously.

I had a win. Judy mentioned she had to get his fingernails cut, and I remembered a time when my sister-in-law managed to get her father’s nails cut by giving him a “manicure.” So I spent some time massaging my Dad’s hands until he was nearly catatonic, nearly snoring, and then gently snipped nine of the ten fingers, being careful to avoid the sensitive half of a finger on the tenth. This took an hour, and the success gave me confidence and my Mom felt I was safe enough to leave him with me so she snuck off with a book. I sat and he stuck to me like glue the rest of the day. This is different from the last time I visited in April. Then, I had my friend Megan with me and he was anxious any time Judy left the room. This time, he was only anxious if I got up to do anything. He had basically fixated on me and I could not so much as put my hair in a ponytail without freaking him out.

We read a little book, “Advice from a Tree” he had been carrying around with him all morning. He’s a tree guy, always has been, and I thought this was nice that he liked this little book. I would read a little and he would read a little, and it didn’t always come out right when he read his bits, but when it did, it was in a voice of authority and control, and my head would snap around to attention, the daughter obeying the father.

When I came in from my run in the morning, he looked at my shoes and said, “yeah yeah, I used to go with the fellas” and I wondered whether he was connecting the shoes to running or connecting the shoes (blue with gold laces) with the navy.

And we drew. Inspired by LMB, who spends hours sitting by the window drawing drawing drawing Bill carries a pen around and occasionally marks a stray envelope, recipe card, the newspaper, objects left lying on the table. He likes to carefully encircle existing shapes. He has an artist’s diligent hand. For a full ten minutes I had his attention as I drew waves, a ship, some jumping fish. When I handed him the pen, he looked at me rather sternly, and then proceeded to snap the pen in half. He is strong. You might see an old, feeble man walking, holding someone’s elbow, but give him a pen and tell him it’s his turn to draw, and he can take a pen apart with vicious intensity. It was stunning and frankly, freaked me out thank you very much.

He loves dancing with his daughters and granddaughters. Tonight, Katharine and Paul made dinner at their place, and we all turned up in the cute, kudzu encircled house and sat listening to Bueno Vista Social club and suddenly we were all dancing. He’s a card and a flirt and no longer has any timing or rhythm but shuffled across the floor with an appropriate, somber look on his face. For a moment there was no Alzheimer’s, only Bill, but it was only a moment. Watch out when he yanks his hand back as if burned when you grab it for a spin. But then he will come up and kiss you on the forehead. How utterly confusing this can be.

My niece’s boyfriend, Jake, takes Bill’s arm at the end of the evening to help with the stairs outside. We take it slowly. I am behind them and behind me, my niece, six months pregnant and cute as a button in a white woolen hat, chats with LMB. Judy goes to start her car. Jake is a natural and Bill likes him. He has been here two days and Bill gravitates to his voice and seems to like when he is in the room. I mention to my mother that she should try to convince Lily and Jake to move here, because Jake should be Bill’s caretaker. She nods, agreeing. She is so tired, but so happy to have so much of her family here for Christmas. I wish I was here longer, but I know I could not do this every day.  I am not even sure I could do this for more than one day. I know it is harder for her, losing her best friend, piece by piece, day by day.

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A more normal time?

When I lean in toward my Dad’s freshly washed hair, thanks to the difficult struggle Debbie, the nurse, had with him this morning in the shower, I smell shampoo and shaving cream and a little sweat he generates from constantly moving. The caretaker of convenience cannot sit with a book or expect to catch up on e-mail. She must be attentive and move like a shadow in the erratic, concentric patterns of gray matter gone scritchy-scratchy, of lost connections and missed synapses, of robust physical health (for eighty-one!) cursed with shortness of breath, the result of frustration and every-other-moments of panic. Like a baby’s, his facial expressions can change in an instant – storm clouds and then – AHA! – the kidding, muppet-like gaping guffaw. In my stages of grief over losing him these past five years, this is perhaps the most tragic and the least emotional for me. Gone is the weepy, sorry-for-myself stage.  Gone is the anger and helplessness. Now it is like being a miner – constantly chipping and looking – what is left? What is there? Is that gold or is it a reflection? Trying to savor the gold.

At every coming and going I hug with feeling my sisters, and even my brothers-in-law to say thank you I’m sorry I love you please forgive me don’t go. I don’t realize I am doing it until I feel the bit of resistance telling me I’ve hung on a little too long. It’s just like, like, the little hunky dory kid needs a little reassurance that we are family, I got all my sisters (and brothers) and me. I wish my two brothers and my other sister could be here. As we sit at the table feasting it could almost be normal. It could almost be a scene from when Bill was still okay, but then nobody is really fighting anymore so we definitely are not normal, anymore. We are all good to one another, now. Or we try.

The kids, who are not kids, are not like we were, and do not stay up much past nine, don’t sit at the kitchen table drinking red wine and eating the rest of the chocolate mousse. How different they are from what we were. How different we are.

Someday, I tell LMB, this could be me.

She blinks twice and goes back to her drawing. Next to me on the couch, Bill says, “yes, yes I know.”

It’s all in how you look at it…

3 Aug

I know I am a lucky monkey. I wake up grateful every day. Things that might strike others as bad to the core, my internal optimist-monkey is always compensating for with positive spin, like a C- average marketing student with an internship at Stop and Shop brand generic foods.

Seen 8/3/14 at Stop and Shop, Wyoming RI

Seen 8/3/14 at Stop and Shop, Wyoming RI

 

But true to perception, I am an optimist. A cynical optimist, but an optimist nonetheless. This is why Saturday morning, and actually a lot of mornings lately, are surprising to me, because Saturday featured an incredibly cranky me as we prepared to run our 2nd Ocean Beach 11.6 mile road race in New London, CT.

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I don’t know what’s going on with me these days. I know I am incredibly lucky. My family, for the most part, is healthy and happy. My job, although of late it has been stressful, is good and interesting. But I have been burying stuff, or making piles of it, maybe. I worry about stuff. I worry about my Mom and her having to deal with my Dad and his stolen memory, and the changes fast happening with them. I worry about my daughter and the good independence born this year that makes me so happy but also a little sad. She never had a teen rebellion. She just quietly took responsibility for herself and stopped worrying what I thought about it. This is good, and necessary, I know. This is what the optimist in me thinks, anyway. The pessimist-monkey wants to wrap her in bubble wrap until she’s 40.

Saturday I had this stuff on my mind. Every race I do, I think about my Dad anyway. He’s the one who got me in to running when I was 13. You had to do something he liked to get any time with him, since, when he wasn’t out at sea, he was only back for a couple of months. He liked being outdoors, so we six kids had limited things to choose from to be part of his time home. My brother can coax beautiful native flowers out of his postage-stamp sized Portland garden and it’s probably because he chose that aspect of my Dad’s time home – you could make decent cash weeding for my father. I was pretty garden lazy. And chore-lazy. But you had to do chores to do the fun stuff with him, so I got good at getting stuff ready to go to the dump, or raking leaves absentmindedly. I couldn’t wait for chores time to be over so we could get on to the fun stuff – a hike at the Norman Bird Sanctuary, perhaps, or walking out to Hazard’s Beach.  Even getting to go to the dump or to the hardware store was a big deal and I would wait by the door like a dog to go for the ride in the car. When I got a little older, he said he was going out for a run, and if I wanted to go, I had better hurry up. I ran and got on my terry shorts, a t-shirt, my pair of Zipps, and knee socks and off we went. I was so thrilled to be included. I was probably missing out on hanging out at the pool with my best friend or the beach with my Mom and sister, but I was going on a run, like Bruce Jenner, or Jim Fixx. Back then, I didn’t know of any female runners. I just knew I was getting a once-in-a-lifetime opportunity to do something that my Dad usually reserved just for himself. We ran up to the Art Association, left on Bellevue, and all the way out to Reject Beach, where we turned around to run back. It was probably only a couple of miles, but it felt very far. Along the way Dad waved to a tall man with white hair and told me, “That’s Claiborne Pell.”  There were a lot of runners on Bellevue. I felt a part of the gang. Dad showed me how to execute a sprint finish down Old Beach Road. The next year, I joined the high school track team and I did okay. I was never first, never last, and always, always did the best that lazy monkey allowed.

Lazy monkey shows up at races. This is the monkey who, despite the body being trained and fit, despite my brain being ready to race, tells me that I would much rather be home and should give up this race stuff already, since I am never going to win. And then there’s Tom in the car, saying, “are you ready to win???” and I’m like, dude, I don’t win these things. “Well, how are you ever going to win if you have an attitude like that and don’t line up at the front?” But Lazy monkey doesn’t want to line up at the front, because then she will be passed and have many more reasons why racing in the rain, even a free race, kind of just sucks. At first it does, anyway.

Thankfully, the spirit of my fellow runners was enough to turn around my crappy attitude as we stood around waiting for things to start. I looked forward to the front of the pack and caught Tom’s eye as he turned around to look for me. A lucky happenstance. The gun went off and off we all went, and I went into Run Like a Meanrat mode.  The race starts on a beach and hugs the coastline in the first mile, so it’s really hard to be all pissed off when the ocean is like, right there. Even on a rainy day. The midpack moved along like a herd of elephants. In the distance I could see Tom’s orange shirt. I decided to ignore Lazy Monkey and push it a little, maybe because I was thinking of my Dad and that was a good way to think of him. He wouldn’t like me dawdling.

Around me, I had all kinds. There were the gabbers, who talked for four miles and stayed with me, fast and young, despite my attempts to drop them, until I got a second wind and pulled far enough ahead to not hear them anymore. There was a foot slapper who stayed behind me, annoying me at first but comforting me in later miles. There was the Girl In Purple – one in every race – elusive and steady. I tracked at her heels. And then there was the compact older dude, the Dad Stand-In, who I picked to be my Dad for this run. He smelled bad but dressed like my Dad used to on runs – cotton shirt (old school!), athletic shorts, socks, and older sneakers. Surprisingly fast. I stayed with him when I lost the girl in purple.  Meantime, I pushed my pace as hard as I could. I haven’t been much on the roads and what I have done this year has not been fast, despite using a new training plan and running more miles than ever before. But I had been concentrating on trails and distance for Wakely, and my road miles were showing it.  But I didn’t let negative old Lazy-monkey get to me. I looked around and enjoyed the scenery. And even in the not as scenic parts of New London, I really was enjoying it.

Mile eight and its hill came and went, and I caught up with Amby Burfoot and a few runners running with him. He’s a talker too. I listened to him for awhile. He’s not as old as my Dad but was a big-time runner way back when and won the Boston marathon the year I was born. So that was cool. I decided to pull ahead of them and did so, effectively getting off by myself at mile 10. I felt pretty good at this point, the morning’s cloudy mood lifted, and I pulled out the stops for a sprint finish at Ocean Beach.  Three minutes slower than last year, but still a good race considering I have been negligent about road running.

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photo courtesy Sara Pearson

My Dad would have loved this race. Sure, I can call my Mom and tell her to tell him I ran another road race, but I’m not sure he’d even know what that is, or who she is referring to. I have to remember our runs from Newport now, because he doesn’t, anymore. I have to remember my runs now, for me. And isn’t it amazing that things that we do as parents that mean probably very little to us at the time mean so much to our kids? My Dad probably thought it was cute and funny that one of his kids wanted to run with him, but likely had no high hopes of me ever being a runner as an adult. I think about this when I think about my daughter, and wonder if, despite my neglect or my being missing in moments makes any difference, since she has these memories of us that mean so much to her, and help to define and guide her now that I am no longer in the role of guide. Just as my Dad, and memories of spending time with him, guide my behavior now.

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Meantime, Tom and I spent Sunday afternoon looking at old family slides of his Dad and Mom and Grandparents. Since Tom lost his Dad to Alzheimer’s it was especially poignant. I wonder which one of us will inherit this sucky gene. Anyhow, we gathered the slides to get digitized at Southtree Photo Services.  I will have to go through my box of photos and see if I can find some old slides at my parents house.

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This blog post has been all over the place, I know. But that’s what my brain has been like. Running is good and bad in that it helps you sort through a lot of shit. But it also brings back memories for me, and I am grieving for a person who is still here, but not here. There are a lot of conflicting feelings that go with that last part.

How do you deal with your nostalgia?

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