Jan's Story (8 page)

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.

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

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

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.

     
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 lapses. 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?”

Yes, darling, I would answer, using my matter-of-fact voice, hoping my calm tone would reassure her.

“I don't want to be a burden,” she would repeat over and over. “I can just go away. Why don't I just go away?”

No, darling, I would say. I will take care of you. Wouldn't you take care of me?

“Yes!” And the idea of being a burden would fade … for a while.

“Walking with a friend in the dark is better than walking alone in the light.”
~Helen Keller

If there is something good here, it came not from within me but from how others helped me. Some were friends already, others were strangers who became friends by reaching out. I didn't realize how solitary caregiving would be, and I underestimated how much I needed help. My excuse was that I was the amateur trying to force aside a field of dense fog by waving my bare hands.

Being overseas had made us exotic and interesting, the well-traveled couple worthy of a dinner invitation. Now what was good about that life played against us. In Asia I was isolated from the most normal kind of help, which was about getting insight from others fighting the same disease. I tried finding a support group in Tokyo, but what groups they had were all in Japanese and only for those with elderly parents or aged spouses suffering from Alzheimer's. Japan's culture discouraged people from talking or sharing much about their personal lives, so there was little help for me there. And Japanese doctors didn't have the kinds of medications available that I could get in the United States.

But a group formed around me from different parts of the world, small but effective. Harry Dank first met Jan in 1986. He's one of those rare people who likes to work overnight, and this has served him well at his job at CBS Radio News. That meant he was on duty at night in New York during our daytime in Asia. He was often the one who called Jan to get a story done when she was the radio stringer on our first posting in Tokyo.

When Jan was diagnosed, Harry became a human search engine, keeping me up to date on stories about new research, drug trials, and the occasional hope from potential breakthroughs. It helped that he spent five days a week, eight hours a night, reading the news wires. He would forward stories on Alzheimer's as they appeared.

But mostly he called with two questions: How's Jan? And equally important: How are you? Being a fellow journalist he expected the truth, and that meant I had to tell him the truth, which meant I had to put those things into words. That question always made me pause and consider where I was in the journey, and explain to him how I was doing at this point or that. It was a kind of talk-about-it therapy, don't hide from those feelings, and that worked.

While I will always be eternally grateful to Harry and how he helped me, I stood in awe of the instinctive abilities of others to understand what Jan needed because there were so many times when I felt both lost and unsure how to respond to her changes. I was forever reading books or checking the latest website on Alzheimer's, but some people were just born to have that insight. One such person was Billie Tisch. Her late husband, Laurence Tisch, was the CEO of the CBS Television Network from 1986 to 1995, and I was lucky and grateful to know them well.

Early on during his ownership, he and Billie visited Tokyo to see the CBS News Bureau and there was a small dinner where Billie met Jan. Billie sent a thank you note and said what a lovely time she had; how much she liked Jan, and that we should keep in touch. And we did. If Billie and Larry were somewhere traveling where we were, like London, we would meet for dinner. If we were in New York, we would try to match schedules for the same.

Petite and incredibly gracious, Billie was also always wise beyond my comprehension. There are rare and good people like that. She sent me a note once. I have it still:

“I hope that as Jan's memories fade, you can dig down for thoughts of easier earlier times together and that your treasured recollections bring smiles of what was, rather than sadness for what is lost.”

We visited New York once after Larry died and shortly before I had to move Jan into an assisted living facility. We had dinner with Billie at the home of her son and his wife, Andrew and Ann Tisch. For no special reason, she gave Jan a gift of a small scarf. I believe it was red, one of Jan's favorite colors. I asked her later if she had read up on Alzheimer's and wanted to give Jan a memory cue, and she said no. The idea of giving Jan a present was something she did from instinct. I remember it being a hard night for Jan. There were seven people chatting with each other around the table, something she would have once loved. No more. She went quiet. Through the evening, she uttered two sentences and that was it. But the scarf … she remembered that for weeks afterward. Whenever she wore it, she'd say, “Oh, that was from Billie, where we had that lovely dinner.”

Did she remember the dinner conversation? Not at all. But she remembered the scarf, and it reminded her of Billie, and that somehow connected to “a” dinner. And that pleased her. And thrilled me.

There was also help from another long-time friend that Jan liked and admired. Amy Bickers had worked in London, Hong Kong, and Tokyo, where she was the Bureau Chief for Voice of America. She and her husband, Chaz, moved to Seattle when they decided it was time to raise their two rambunctious American boys in America with a backyard that could absorb some of their endless energy. Amy has the same upbeat, just-get-it-done personality that Jan once embodied. Amy has a lot of the same restless energy that Jan had, and it was now spent raising two boys, jogging every morning, and still finding time to work a full-time job.

She has always radiated a spirit of caring for those important to her, and with Jan's diagnosis, Amy was almost immediately at hand and ready to help. She and Jan started as colleagues who became friends after they first met in London and worked for CNN. They seemed fated to work together. When we moved back to Tokyo and Jan began free-lancing for VOA, Amy was, by then, living and working in Hong Kong and was one of the VOA editors who took in Jan's stories. VOA moved her to Tokyo where, until they left for America, she and Chaz lived in our apartment building a few floors below us. Being Amy, she was not convinced when, during a phone call from Seattle, I told her I was “all right” after Jan's diagnosis in 2005. Typical of Amy, she went to work finding ways of helping Jan and me.

“You need support,” she said. Being a reporter, she reached for the tool she knew best … the telephone. Phone call after phone call, one conversation led her to another source or idea. Those collections of information led to an e-mail that left me humbled for the thorough work she had done, and the care she was bringing to Jan's plight and my confusion:

Dear Barry, Here are some resources to get you started.

Some? Amy sent me a detailed list of help lines in the US, complete with phone numbers and contact names, people to whom she had personally spoken. She sent suggestions for books, and even had a line on someone she knew in Tokyo who could spend time with Jan. And the e-mail included this:

A man named Dick has a spouse whose wife also has Early Onset. Lives in the Seattle area.

I called Dick Lundgren immediately. Dick's wife, Dorothee, was much further down the road than Jan with Early Onset Alzheimer's Disease. Her descent was so similar to Jan's that I felt Dick could warn me of the pitfalls ahead. And he was honest enough that I sensed he would share the mistakes he made along his way, so I could avoid making the same ones. In time, I came to describe him as my Alzheimer's Buddy. He was the lighthouse in my fumbling darkness because Dorothee was more advanced. It was as if Jan and Dorothee were in a parallel universe, and Jan's changes mirrored what Dorothee had already passed through. Dick and I as caregivers watched and coped, for better or worse, from the outside.

Dorothee's symptoms first showed in 1995, and she was finally diagnosed in 2001. Dick retired in 2003 to become her fulltime caregiver. In January, 2008, she was functioning so poorly that Dick felt he could no longer help and realized he could no longer cope, and he finally placed her in an Adult Family Home. Dick would look back and use his own experiences to ease my confusion. Since he was also active in Alzheimer's support groups, he could also draw on shared conversations with those others going through this with us. He was better than a book or website because he was a friend.

The first question we discussed was whether I should tell people about the diagnosis. There are pretty much only two answers—you share or you hide. Dick said people in his Early Onset support groups did both, and those who were most successful were the ones who were open with friends and family from the beginning. This made sense. People already noticed changes in Jan, and it would only get worse. They needed to know what was going on so they could adjust both their thinking about Jan and how they dealt with her when we got together. That also meant reducing the number of awkward moments for Jan when we were with other people. This, I desperately wanted.

Dick helped me shape guidelines I could share with friends on how to prepare for being around Jan: be patient with the constant repetition of sentences, understand why she will tell you the same story three times in ten minutes or, conversely, why she will sit without talking for an hour or more.

And he helped me with an early crisis that was a warning of how Alzheimer's was playing cruel tricks on Jan's brain by altering what she could remember. As I explained to Dick, it unfolded this way:

     
I am feeling a bit overwhelmed. I've seen some things in Jan that alarm me, and I'm wondering how they match your experiences.

     
Example: The Sunday of our Seattle visit, Jan's dad had a conversation with her about his will (I wasn't there). Jan came downstairs in tears, saying her dad was throwing her out of the will because we had enough money. Jan took this as rejection, and that she was being separated from her two brothers and two sisters.

     
BUT - when I talked with Jan's father, he was dumbfounded. He said he didn't tell her he “cut” anyone out of the will, only told her that he would probably give most of what money he has to the grandchildren for college. To him, it was a casual conversation, not a planned confrontation. This was just Jan and Dad talking about his priorities for his estate.

It was a first look into what would be more and more common; that what I, or others, told Jan was not getting through as we said or meant it. More importantly, she could not give me an accurate sense of what others were saying to her. Her memories were being filtered and distorted in unpredictable ways.

Dick had already been there, as he wrote:

I understand exactly what you are talking about. I went through this with Dorothee, and still do from time to time. She was telling me things that I knew were not so. She would get things in her head and, no matter what I said, I could not change her mind. I learned that the only way to get around this was to first appear to agree with her. Then if it was due to something she told me someone had told her, I'd contact that person directly to get the correct information. I could then decide to address it to Dorothee or just let it go. I no longer give anyone my home phone number, just my cell.

He warned me that I would see The Disease making its changes in sometimes small and subtle ways. He called them “Little Windows” into Alzheimer's. As I watched our lives change and felt us withdrawing from the world, Dick sent me this:

     
Dorothee went through this for a while where she didn't really want to go anywhere. In hindsight I think she was concerned that she would do something that would be embarrassing for her and that people would notice and figure out that she had Alzheimer's. The other thing that could be happening is that there are a number of different steps that Jan has to do to get to the market. For instance, leave the apartment, get on the elevator, remember which button to push and floor to get off on, leave the building, etc. I think you get where I'm going.

     
You and I do this without thinking about it, but a person with Alzheimer's has to work at thinking and remembering everything to do. This is where all of the confusion starts and grows from. Also, by the time she gets to the market she is exhausted from all of the work she had to do to get there. Then she has to go through all the steps to get the items she went there for. At some point Jan will get to where she will not go anywhere without you or someone else. She also will walk at some distance behind you unless you hold her hand and keep her with you. If I don't hold Dorothee's hand she will stop and stay in place until I get her.

One day, there was an incident with Jan. She got up in the middle of the night headed for the bathroom. She was confused, unable to communicate what she wanted. Moreover, she was stooped and shuffling, more of an unsteady stumble. It was scary, as if this was some desperately old person who could no longer walk. I led her to the bathroom and back and let her sleep late that morning. When she woke up, she had no memory of what had happened, not even of getting out of bed.

I needed more than information … I needed advice, so I turned to Dick.

Question: I told Jan about the event—which she didn't remember—and it scared her half to death. So now I am wondering if honesty really is the best policy here. Do you have any advice? I am inclined to NOT talk about these events with her, should or when it happens again. I don't see that it helps, and I can see how frightening it is for her to hear about things that she doesn't remember.

To which Dick replied:

I have found that it is best not to tell Dorothee about most things like this. It only causes her to cry, and it just isn't worth it. I also decided long ago that this is the only case where a “little white lie” doesn't hurt. We have discussed both of these in my support groups and all have come to the same conclusion.

Then there were the little changes that altered little routines, and yet became a constant reminder of The Disease. One was a penchant she developed for collecting and rearranging things for no reason. I first noticed this one morning when I went to take a pill and the bottle wasn't on the bathroom shelf where I usually left it.