Jan's Story (7 page)

It didn't take middle of the night calls to wear me out. Caregiving was doing that just fine, thanks. One morning a colleague walked into my office and asked the casual, “How are you?”

“I'm tired,” I answered.

“You're always tired,” she said in response. I thought about her comment and realized she was right. I did always feel tired. It was the mental tiredness from having one part of my brain constantly attuned to Jan; how she was doing, where she was, was she okay.

And most of all, would I be home that night to care for her, or would I be off somewhere on a story? In years past, that wasn't a problem. It was work, and Jan accepted it. But this was not about her approval. If I wasn't there, would she remember to take her pills in the morning, or would she go for a walk somewhere and forget where she was. Or worse, would she try and cook something and then go take a nap and forget the stove was on.

This loop of questions and worry ran loud in my head, and I dared not turn it down. She needed a caregiver with never ending vigilance, and I wanted to be that caregiver because I loved her. But the reality, ever slow to dawn on me, was that I may not be the most dependable person for this job because of all the traveling I had to do. The pressure was building, and so was the exhaustion. It took covering a story away from home for me to discover my journey was the road to destruction.

The question was always the same for me: How do you fight back against a disease you can't beat? I found a way—I took it out on the rest of the world, and got to know a new emotion one-on-one—uncontrollable rage. It began deep in my stomach, a welling up until my gut hurt, and the adrenaline poured into my system.

I could feel it taking over my body, starting with my stomach tightening. Some part of my brain would try and stop the emotions, sending warnings that this was not good, that I was losing control. I got good at ignoring those warnings.

Instead, I would feel it in my whole body. To others it seemed like a spilling of anger, but from the inside there was the rage that The Disease attacked Jan. She was an innocent; she was someone who brought smiles into other people's lives.

The rage took over because I could simply not hold it in, and maybe, in part, because I wanted it out, yearning for some searing catharsis, even if it was about losing control around others.

I couldn't aim my anger at Jan, even though the anger was all about The Disease and what it was doing to her. So it erupted at odd times and toward people who had no warning of what was coming, and no understanding about what had triggered my outburst. Someone made a small mistake or irritated me, and I exploded into a screaming, irrational rage.

One day, in southern China, we were outside about to shoot a key interview. It was a lovely day and we had just finished lunch, courtesy of our hosts. The translator was standing with me, the cameraman behind me, the sound man on the other side, and the producer was behind monitoring the questions and the shot. As I asked the first question, the cameraman stopped me. The eye contact was wrong because the person was looking at the translator and not at me. We asked him to look at me.

I started again. The sound man stopped me. There was a problem with the audio. I blew up. I screamed and lashed out with a rash of obscenities. Get it damn right, what kind of professionals are you, I can't focus if you keep interrupting me, can't you do your jobs?

Then, with much effort, I tamped down the rage, and we started again. Later, as we drove away, I fumbled out an apology. Stress, maybe I hadn't slept that well. Frankly, whatever I said was lame. What could I tell them? My life is now all about rage?

The people with whom I worked became wary around me, cautious lest I blow up over something. And they had no idea what it would be next. I didn't blame them. Even I became wary around me. The rage was so easily triggered because it had no real target, and there was never absolution. I couldn't be angry with Jan. She didn't cause this. What use was it to be angry with God? I couldn't call Him out and have a decent fistfight, and punish Him for what he'd done to my Jan, who didn't deserve this. How could I ever exorcise this rage from my system?

Like most caregivers, I thought I was alone. It wasn't until I got a note from a friend whose wife was also slipping away from Early Onset Alzheimer's and was relieved to find another person caught up these emotions. There was kinship in that. Rage, it seemed, was contagious. I wasn't alone after all. Part of his note:

     
“We continue to slide slowly downhill—she in her ability to speak and do even the simplest of chores, me in my ability to control my temper. I never turn it on her, but all it takes is a broken shoe lace, and I go ballistic.”

When I was on the road, there was the unending worry about making sure she was safe. Especially with cooking or, more precisely, using the stove. Cooking had always been her therapy, and it hurt to think about taking this away from her. In the old days, before she got sick, I remember how she wanted to teach me how to cook, so sure she was that I would be able to learn. I would laugh and tell her that she was such a master, it was like Picasso telling Mrs. Picasso that he could teach her how to paint, it being so easy and all for him.

She was still shopping and cooking for us when we were in Tokyo, and I considered that a good sign. But there were more occasions when she brought dinner to the table and left the stovetop burner on high heat. I got into the habit of checking the burners, which I then considered problem solved. But what about when I was on the road? Simple. I would just call and ask about the stove. Problem solved. But, of course, it was only solved in my mind because she could have hung up the phone and headed straight for the stove. It would not occur to her to tell me that the stove was on.

When I told people about Jan's diagnosis, I saw fear in their eyes, the fear of the words “Alzheimer's Disease.” There is a natural, human terror of The Disease. Other illnesses may take away some of our abilities, and the effects of other diseases can often be seen. Not The Disease. It takes what we have all had since birth, the mind and its memories, and our ability to talk, dream, and imagine. I cannot fathom what it is like, even now, except the raw fear that it will happen to me.

And when we see the person who looks as Jan does, still beautiful and bubbly, we want to reject that she is ill in any way.

I know this rejection well because I did exactly the same thing. I would delude myself with daydreams that there might, one day, be another moment as defining as the moment when I knew we would always be together. In my daydream, Jan would suddenly get well after some miraculous medical advance, and then this nightmare would end. And (in this improbable, but constant, daydream) after this miracle took place we would laugh about the fear and how the bad days were behind us, all the while sipping champagne to celebrate her wellness. We would pick up our lives and all would be back to normal.

Wouldn't someone invent a vaccine, a shot that would bring her back? It had to happen soon, because the truth of where she was going couldn't be happening to us. My mind screamed in denial. I could not allow this.

The screaming didn't matter. The rage didn't have any effect. The daydreams were useless, or worse, they fed my ongoing denial. The changes came when The Disease decided, not me. My daughters tried helping me in this new job as caregiver on those times when we were all together. Sometimes it was heartbreaking.

We all met in Palm Springs, CA for Christmas in 2006. I rented a house with a pool and a mass of bedrooms. Emily and her husband Craig drove from Denver with their dog, and Julie flew in a few days later. We goofed off, sat by the pool, and read books, or napped, and shopped for silly Christmas decorations.

I bought presents for everyone from “Dad and Jan,” but I knew Jan had no presents for me, because I had done all our packing for the trip. The girls and I hatched a plan, and we went to a book store and I picked out two or three truly trashy mystery novels, suitable for long airplane flights, and the store wrapped them in bright Christmas paper. The plan was that the girls would slip the books to Jan and she could slide them under the delightfully garish 2-foot high revolving plastic electric Christmas tree and feel that she was gift-giving to me.

She wouldn't do it. Flat out, not interested. Somehow, she had it fixed in her mind that my Christmas present was going to be a new suit by Armani—that is what Barry needed and deserved, she said. The practical reality was that there was no way we were going to go suit shopping. I was overweight and didn't want to spend the money on an expensive suit, especially as the credit card bills soared from our vacation.

No matter … forget any books for Barry, the present from her would be a suit and if she couldn't get it just then, she would buy it later. And that became her present of choice for Christmas and my birthdays from then on. The Armani suit was a fixation for her, the perfect present for Barry that she would pick out, if not now, later.

Later never came.

We were back in the US in June and saw Jan's neurologist in San Francisco. During these appointments the doctor administers a quick test where she memorizes a few items, writes sentences, gives the day and date, what city she is in, etc.

It was clear that Jan was having a lot of trouble with short-term memory. For instance, given a list of five items, she could not remember any of them about two minutes later. This was a significant difference from our last visit.

COMPENSATING: This is a new one, and I am told it is not unusual at this point. I noticed Jan reacting to my questions with answers that showed she couldn't remember something but didn't want to admit it.

Jan is “compensating” in other ways. The other day she went shopping at the local “Friendship Store” (a store in Beijing where we lived part time while in Asia) which sells Chinese goods to tourists. Jan wrote “Friendship Store” on her wrist. When I asked that night where she went, she flipped over her wrist and had the answer ready.

I also noticed something else unusual for Jan; she closed herself off to new experiences. This happened when someone suggested that she might enjoy visiting a local produce market. She got visibly angry. A little research shows that this is probably not anger, but fear. It can be daunting to contemplate doing new things. This was noticeable because Jan was usually first in line for new experiences.

I must confess that I am taken aback at how fast Jan's short term memory seemed to evaporate … it robs us of sharing daily experiences, and robs her of savoring the good things that are a part of all of our daily lives.

This is hard for me because I find that I can no longer have long conversations about complicated things. She doesn't really follow me that well. She'll hear a word or phrase and suddenly head the conversation off in a different direction.

I am losing more than a friend … also slipping away is the one person who was my confidante, with whom I could and did share everything.

I feel like I'm trapped in a movie, watching it unfold and already knowing the ending … but with no way to rewind back to the good parts.

~Barry

“If a situation requires undivided attention, it will occur simultaneously with a compelling distraction.”
~Hutchinson's Law

People who spend time with me, and who are foolish enough to ask, will find that I have a passion about cars from the 1950s. It goes back to being a boy in the '50s who, at age seven or eight years old, could sit next to my dad in the front seat of our two-toned cream and green Mercury sedan driving down a highway and tell him the names of the cars coming at us by shape and design. “Buick” I would say, noting the distinctive front end, and do exactly the same for “Chrysler” or “Ford.”

There were times when I could tell the model and year. “Last year's Plymouth,” I would bark out with childlike confidence. “The cheaper model.” I grew out of this in the 1960s when cars got bigger and bulkier and, to my changing taste, not as interesting as something called girls.

When my daughter, Julie, graduated with honors in chemistry from college and was going on to graduate school on a full-ride scholarship, I told her I would buy her a car and suggested a little Mercedes two-seater from the 1970s, or maybe a classic 1966 Mustang convertible? They were really quite reasonable and easy to maintain.

“Dad,” she said evenly, with the tone of voice children use when they need to reign in their straying parents. “I don't want a car that is older than I am.” I got her a Volkswagen. New.

Imagine the pure joy when the internet came along with eBay and its whole section on “collector” cars for sale. It was like being back in my childhood, spending hours looking, analyzing, imagining what it would be like to drive that 1950s Cadillac or the over-the-top Chrysler with tail fins so high they would reach to my chest. I didn't get a driver's license until 1965, long past the era when these cars had ruled the highway. By 1965, they were retired to junk yards or scrap heaps. Imagine, I would think.

Therapists call it retail therapy and say we shop and buy as a way of avoiding pain. More precisely, maybe I did it to avoid life. I would describe it as my shopping anti-depression therapy: buying something will cheer us up.

That may have been part of it. And just as surely, distraction from The Disease was part of it. Distraction helped me ignore the financial unsoundness of this. I told myself a lie, one of many in those days, that old cars would become more valuable as time goes on. The truth is that a few do, but most don't. And mine surely didn't.

This was a sign of how The Disease was changing me. I started buying old cars because I had some extra money, a cushion that could be critically vital later on in caring for Jan. But I didn't see ahead to “later.” I saw right now and I wanted something right now.

The first car I bought remains my favorite. And, as The Disease grew to dominate our lives and bank account and finances, it was the first to be sold because it was the easiest to sell, the one that would not linger on the showroom floor of a collector car dealer. It was a Titian-red 1960 Buick Electra 225 convertible with, true to the era, leather bucket seats. The ‘225' actually had a meaning—the number of inches the car was long. It came out to almost nineteen feet. I used to joke that it was so big it could qualify for its own zip code. It wouldn't fit in many modern-day garages.

Jan and I loved that car. We kept it at our house in northern California in a garage-sized storage locker and had a friend take it on regular drives to keep it running when we were gone. And when we were there on vacation … my goodness! You knew the Petersens were in town because we would swoop down two-lane Highway One along the California coast in this nineteen-foot red convertible with tail fins and the top down. The top always had to be down, that was unbroken protocol.

I would make an exception for a heavy torrential downpour and put the top up, but your average dense fog or light to medium sprinkles (known as rain) was something to be embraced for the sheer joy of feeling the wind (and water) blowing through your hair (or matting it to your soaking head). It was the owning of an experience that we could have with just the twist of a key.

The car craziness should have stopped there, but it didn't. I became addicted to surfing collector cars for sale on eBay. I subscribed to magazines specializing in collector cars. I found web sites with extensive histories of these cars, written with surprising affection by others similarly smitten by Detroit's style evolution as the '50s and '60s unfolded and America's prosperity and car sizes soared.

First were the bulky early '50s models, then came the mid-decade space age influence with cars actually named things like Rocket 88. And there were the streamlined jet-fighter tail-fins with models competing over which had the highest, longest fins and then all of that suddenly evaporating in the '60s when fins disappeared and style took second place to sheer bulk. Want a nineteen-foot car? Well step this way, sir, because we now have several monster models.

I bought a second collector car, an Oldsmobile Starfire, which my son-in-law fixed up. So far, so good. We sold it and made a modest profit, justifying my new-found shopping therapy. But why the third? Then the fourth. Click, click, just add more money to the eBay bid. And on it went, until the fleet numbered seven. Most were cars selling for less than a secondhand old Ford or Subaru. But a couple took a big chunk of my money.

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 convertible. 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.