Jan's Story

by Barry Petersen

  And they were scattered … a Thunderbird roadster convertible bought in Illinois I had shipped to Arizona where someone was going to re-build the engine. A Chrysler Imperial bought in California also moved to Arizona to be stored by friends. I bought a 1953 Buick Skylark in Denver and had it shipped to Illinois to a restoration expert who dealt exclusively with early 1950s Buicks. It was beaten up and slightly rusted. I bought a beast and thought, well, someday, it will be a beauty. The reality that restoring it to be a pristine piece of American automotive sculpture would cost more than the car might ever be worth was something to think about … later … if then.

  A 1958 Cadillac Eldorado Biarritz convertible was shipped to one of the country's best 1950s Cadillac restoration companies, located in upper New York State. Just the name—Biarritz—was enough to blind me. A Cadillac! A convertible! The '50s! The fact that it needed a paint job, the engine rebuilt, a whole new interior and don't even talk about the transmission and brakes, that was tomorrow's worry.

  The retail therapy included not just shopping but researching the background of each potential purchase by talking with the owner or the mechanic who cared for it, and then checking its value against books and websites that specialize in collector car prices.

  Then figuring out where to have the car moved and what company would pick it up here and deliver it there. It meant late night phone calls and wire-transferring money and it was amazingly … and this was the point … consuming in its attention to detail.

  Somehow, in my mind, having these cars let me feel like I was a strutting teenager in slicked back hair, wearing a t-shirt with a pack of Camels rolled up in the sleeve. Cool. Elvis cool. I had the cars to prove it.

  This image, by the way, had nothing to do with my high school years when I was a classic nerd in big glasses who never, ever wore a t-shirt to school or anywhere else. And while people would have described me in many ways during high school, cool was not one of them.

  If this doesn't seem silly enough, then consider that I lived in Asia and could not drive these cars which were scattered across the US, and some didn't even work. With the exception of the red Buick Electra 225, these were cars I had others test drive and then had the cars moved by transport companies. There was no daily driving pleasure in this for me. The pleasure of driving them (I told myself) would surely come later. Unless, as happened once or twice, I sold one and bought another and the cycle would churn on.

  To put it another way, to be clear about this, I was in a world of self-delusion. I spent money and then committed to spending more money for repairs or storage, while lying to myself by saying that this was okay because it was a good financial investment.

  And for this I had a willing, encouraging and unwitting partner; Jan. On a Sunday afternoon I might go hunting for her in the apartment to come back to the den and see what I had found on the computer.

  “Look at this,” I would say proudly. “It's a 1957 Thunderbird in great shape.”

  “It's beautiful,” she would say, her voice matching my enthusiasm, sitting down in a nearby chair, folding her hands in her lap, leaning forward and giving the car on the computer screen her full attention.

  “What do you think, darling? Should we get it? Would you like riding in this one?”

  “Sure, if YOU like it!” was her happy answer. And just as she would repeat thoughts and sentences, she would repeat this line to me: “Sure, if YOU like it!” Her cheery tone would mimic my boyhood enthusiasm.

  Without meaning to, and certainly without knowing it, she was enabling me. I listened to her giving me permission and I heard only the part I wanted to hear … not the impaired judgment of someone with a brain-altering disease, but the words pure and permissive: Sure, if YOU like it!

  We would talk about cars over lunch or dinner, how we could use this car or that car, whichever one I was in love with that day, and I could babble endlessly about what it could be worth with a new interior or paint job. I could spend distracted hours on the web with a mission, learning about a car I might want to buy, understanding its history. Was it prone to rust? Were parts readily available? What did people say about how it handled in today's high-speed freeway traffic?

  Jan wants the car (she said so herself, “Sure, if YOU like it!”) so there was her encouragement. Why not spend the once carefully hoarded money? Wouldn't this be something we would share, cruising together in our cool cars?

  Why worry about some Alzheimer's induced far-away rainy day when there were already thunderstorms and tornadoes and hailstones raking across my life right now. I found temporary shelter in distraction.

  This was not me, the person who always considered himself a careful investor. The first house I bought, and the second and the third, I re-sold myself, each in a different state. I learned each state's real estate rules, bought ads in the newspaper and put up colorful flags and held an open house on Sundays. I showed the house myself because I wanted to pocket the profit, not share it with a real estate agent. The money made from one house was carefully rolled over into the next one, since I kept a wary eye on the tax laws about real estate. I was happy to put in the hours marketing the house myself for the reward and delighted to take the money to buy something else that I could improve and make another profit.

  There was a time early in my working life when I bought new cars, but that ended because I couldn't stand the depreciation on a new car. So I bought used cars instead. Doing that meant money saved, and wisely. When 401Ks came along, I signed up for the max. If there was an IRA that Jan or I qualified for, we funded it to the limit. Money in savings or investments tucked away for the future was money we could not spend now.

  I was a mutual fund, long-term bond kind of guy. That was how I slept well at night. When my first daughter was born, my financial reaction was to buy life insurance to make sure my budding new family would always be cared for.

  Alzheimer's starts small with the caregiver being a bit more careful about the well being of the person with The Disease. Then the caregiving demands escalate, and some people must give up their jobs and income because of those demands. Then come the expenses for part-time or full-time caregivers, or for moving into assisted living facilities. It ends at the single most expensive point of needing full-time care when the person with Alzheimer's slides into a vegetative state.

  The odd thing is that I knew what was coming. This journey may move at its own pace with each different person, but the end of the road is well-marked and well-known. All my life I saved and planned and worried about providing for a financially easy future. I did that until The Disease spread its gloom over me and I needed some point of light, some excitement, some exhilaration giving me gratification now.

  Why, I ask myself now, did I do this when the financially conservative thoughtful side of my brain, the side that had spent decades building a diversified nest egg, was screaming for attention with arms waving wildly? Oh nuts, said the other side of the brain, just shut up! This is about fun. I deserve this. Retail therapy has the deadening effect on pain by buying something. But it went beyond that.

  It also helped deaden the sense of loss as Jan was changing. My mind could focus instead on the details of a 1950s car engine rebuild cost and not have to be whirling day and night with grief or anger about there being less of Jan here today than yesterday or last week. And it was also a way to not think about a future that was now a darkening, deepening shadow. Instead, buy another something with shiny paint and chrome. Pretend and distract, using a distorted financial logic (the more I spend, the more I will somehow reap) that could just as easily prove summer will never end and winter will never come if you just wish it that way.

  Wishing would not make The Disease go away. But maybe I could chase it into a corner, push it off a small distance, or just get it out of my consciousness and allow me something else to think about. And when expenses started mounting, and it was inevitably time to start selling the cars, I chose the one I loved best, the Titian-red 1960 Buick conver
tible. The one I thrilled in driving, the one that Jan loved being in. The one that held our California Highway One memories.

  I wondered later why I chose that particular one as the first to go, and the answer is guilt. Who was I to enjoy and have the thrill of driving this lovely car when Jan was ill? And how could I ever get into that car again without her at my side, her head slightly back as the wind rushed through her blond hair. As long as I had that car, I would have her ghost with me every time I sat behind the wheel. I'd no longer enjoy the distraction or feel the excitement when the engine came alive at my touch, but rather the emptiness and missing her next to me, and finally the rage about days that were not meant to end. The car I loved would become something to hate.

  And if I gave up the one possession that represented so much fun, the car that exhilarated me like that kid from the '50s, would that somehow cauterize the ache of failure I felt for not somehow protecting Jan from this disease?

  In truth, it was just a car … an engine, four tires, a steering wheel. But for me it was the boyhood fascination, my touching and rubbing it like a piece of sculpture. Or feeling a pulsing excitement at how its monster V-8 hummed as I steered it down the road and people who saw it waved in appreciation and I waved back, being Mr. Cool.

  So selling this car was also a way to inflict injury on myself. Jan was losing something, so I deserved to feel pain as well. And as Jan slid ever further away, anything that brought pleasure was too selfish and had to be clawed out of life. Starting with the cool-car dream I loved the most. Because it seemed that all the dreams were ending.

  TIMELINE

  Summer, 2007

  E-mail from Dick Lundgren, whose wife, Dorothee, also has Early Onset Alzheimer's Disease:

  I know only too well the feeling of being alone. We are slowly losing our best friend, even though they are still physically here with us. They are not and will never again be the person we married.

  The loneliness we feel is our grieving for the loss of that person. We are also in the process of going from being a spouse to being a parent. I feel as though I am 90% to 95% parent to Dorothee today.

  All aspects of being married have mostly disappeared. Our sex life died months ago and even giving her a hug is difficult because she doesn't seem to understand. The way I kiss her anymore is on the cheek.

  ~Dick

  8

  “So, fall asleep love, loved by me … .for I know love, I am loved by thee.”

  ~Robert Browning

  The Beginning of Endings

  Could I have been so naïve? So worldly in the good and evil ways of man and yet, so blind to how The Disease would silently slide between us and destroy our coming together. There was logic to not believing.

  Alzheimer's often attacks the frontal lobe of the brain, and the desire for sex must come from some more primal part of the brain. At least that's how I would have explained it had someone asked me. But no one asked, and no one warned me that this, too, was a sacrifice that The Disease would not demand or discuss. It would just take.

  We were blessed with being two people who couldn't keep their hands off each other. We would touch and hold and kiss just because we passed each other in the kitchen. Jan was beautiful, a true five-foot-two blonde, pin-up curvy. She was sensual and spirited, and made it very clear she wanted me, just me. Such are these blessed things when you are a man, a husband, and a lover.

  Our lovemaking was sometimes slow and easy and sometimes quick and instant, as I sought for her release that left her satisfied and the more hungry for me, and me for her. And then we would find in each other the chance to be as one, to hold each other and feel that these two bodies could, if only for that instant, share one soul.

  I don't know when it changed, not the year or the feeling. It crept in, unspoken, un-thought. Do we not all have moments when our lover, our dearest friend, feels ever so slightly distant? Distracted? But the distance didn't go away. Sometimes it felt like I had beaten it back a little, had gotten through to her. Sometimes … not.

  At first I blamed myself, and that was okay. I could do it better, find something more creative. I read books and articles looking for ideas and then tried them. It didn't work. That is when I realized that we were losing our intimacy. What God had joined together, The Disease was putting asunder. And thus began a whole new descent for me, driven by knowing this was another something that I could neither control nor change.

  It wasn't just loneliness; it was an enforced, unwanted isolation. Our lovemaking had always been a strong connection, as it is between any two people who love each other. Without it, I began feeling adrift and confused over what to do about this. I never expected to feel alone when I was with Jan, but now I did even with her beside me because I was without this connection, this closeness, the moments that made the two of us into one.

  And what about Jan? Did she understand what The Disease was doing, how it was forcing us apart … how she was going away and how scared that made us both feel?

  She knew. I'm sure of it. Not with words, necessarily, but with her instinct and her eyes. She knew it the time we were tangled and locked together and I looked down at her and was stunned to see her eyes wide open, staring hard and unblinking at me. Not with passion or pleasure, but as if she was trying to freeze this exact moment in her mind—that if she stared hard enough and long enough she could remember this moment a day or just an hour from now.

  I gathered her in my arms and told her how much I loved her, and then held her long after there was nothing left to say. I stayed that way until she found comfort in sleep. There were still occasional times when I could touch her and the woman inside would find her hunger for me, and we would be together, the way I once believed would never end. But it was ending.

  Is this too much to share, to know about Early Onset Alzheimer's? But there is more.

  As The Disease progressed, she became more unsure of herself and more dependant on me to make almost every decision for her, unable to decide such simple things as what sandwich she wanted at a restaurant. I became less a husband and more like a father to a child; she was growing younger and simpler. How could I approach her, how could I make love with Jan when her magnificent sensual womanhood was ebbing away?

  I would touch her—by now, it was always me starting this—and she would roll over and put her hand on me. She would stroke my chest, up and down, up and down. And I realized she wasn't making love. She had forgotten what we were doing, what was next, how to touch me. She had forgotten her desire. At first I would guide her hands. But as time went on, I would just let her hand slowly brush my chest until her eyes closed and she drifted into sleep. The Disease had taken this away from us. There was no revenge to exact, no one to blame, no point to anger.

  It is surprising what a person will accept. Maybe we say we do it out of love, and that would be sweet and nice to believe. But I accepted this because there was no other choice. And I still had her in my life, as much as she could be. If this one part was gone, the private passion that brings together two people who love each other, then my job was to adjust, and so I did. I think about her now and how we made a thousand nights of memories. We used to joke about how we would chase each other around the old folks' home strapped in our wheelchairs because surely our passion would never end. I think of all the nights that should have been, all the memories we were yet to make.

  They, too, are gone.

  Walking Into Oblivion: Stage Five

  Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-to-day activities becomes essential. At this stage, individuals may be unable during a medical interview to recall such important details as their current address, their telephone number or the name of the college or high school from which they graduated … become confused about where they are or about the date, day of the week or season. (Seven Stages of Alzheimer's Disease from www.alz.org, the Alzheimer's Association)

  With Jan, the occasional lapses became the everyday lap
ses. She would read something out loud to me from the morning paper, and minutes later read me exactly the same passage. At first it was annoying, but in time I got used to it. A new normal.

  In Asia, we lived a two-country life, moving back and forth between Tokyo and Beijing with ease. We had clothes in both places so, if we planned right, we could travel without a suitcase. Except, of course, we were never that clever, and I was forever reaching for a tie or shirt and realizing … oh … it's in the other apartment.

  Jan used to pack for both of us when we went on trips, her way of helping. She was good at it, but in time that stopped. And then, in time I had to go in and repack her suitcase before the trip because her suitcase would be stuffed with clothes, some for winter and others for summer, no matter the season. There might be heavy cashmere sweaters when we were going from sweltering Tokyo in August to smoggy and broiling Beijing, where it would be even hotter.

  So I went through the suitcases and carefully removed what she didn't need. If I did it just before we left for the airport, it worked. If I did it the night before and then went into work for a bit the next morning, she would repack the sweaters while I was away and without my knowledge.

  Switching cities began creating a disorientation that left her feeling ever more helpless. We would travel from Tokyo to Beijing, between our two familiar apartments and, as time went on, it would take her two or three days to figure out that we had changed places. And in time, she completely lost track of the country she was in and tried to pay for things in the wrong currency and, finally, tried to pay for everything using dollars.

  For a while—and only for a while after the diagnosis—she was aware of her own confusion. She would say repeatedly: “I know I have this … thing … in my head. Am I okay?”