Jan's Story

by Barry Petersen

  It appears that Jan is starting to regress into her own little world. I note Bob's comments about singing and a very happy place. This goes along with the loss of short term memory. This is how Dorothee started before she found her “friends” in the mirror.

  In September, 2007, there was a new incident while we were in Beijing; Jan got confused, dizzy, and couldn't stand. We went to the small medical clinic in our hotel. The doctor was concerned about a stroke, so we took an ambulance to a well-equipped Western-style hospital on the outskirts of town, where the cause was quickly identified.

  It was a urinary tract infection, and it hit her especially hard. The good news was that it was an easy thing to cure. Yet something almost routine turned into one of those windows into The Disease. Jan had a series of tests to help with the diagnosis. One of them meant giving a urine sample, something almost all of us has done at some time. But Alzheimer's makes the routine into the bizarre, as I wrote to Dick.

  When we took her to the emergency room on Monday for what turned out to be the urinary tract infection, they asked her to give a urine sample. Two days later when I came home I saw a coffee cup in the bathroom full of urine—somehow she thought she needed to “give” another sample. She covered it with a note saying “do not touch” and that it was for a “special lab” that night. Then she used soap on the mirror to draw arrows at the cup/sample. Oddly, after the emergency room run on Monday she could not remember it by Tuesday. But last night (Friday) she started talking about some of what she remembered.

  There was another facet I could not anticipate. During the exam in the emergency room the doctor ordered a CT scan, to make sure there was no stroke, and it came back just fine. Except they found that the front part of her brain was beginning to atrophy.

  Dick pulled no punches:

  Brain atrophy is the shrinking of the brain which is, in reality, the brain dying. This is what happens to the brain with Alzheimer's. As the neurons can no longer communicate, they die.

  It was also around this time that I hired what I called the “Jan Buddies” when we were in Beijing. They were English-speaking Chinese women, often young college graduates, who could be with Jan and give her the confidence to go out and about in Beijing since she didn't speak the language. Having someone with her also meant she never felt panicky about the chance of getting lost. I began seeing a new pattern of Jan— trying to hide the changes—and she did this with an innate cleverness by compensating for what she couldn't remember.

  As an example, she and her “Jan Buddy” went to a local frame shop. When I got home that night, I casually asked when the framing would be done. She couldn't remember, so she came back with a different answer. “They work pretty fast.”

  She was increasingly taking notes, writing down the simplest of chores. In the Beijing apartment, we usually called room service for dinner. She started writing down our order because she could not keep in her mind “hamburger” or “pasta” even for the minute or two it would take to walk to the phone and call room service and give the order. It was a sign, as if I needed one, of how her short term memory was so far gone.

  I asked Dick if this was all about compensation. He offered a look into the future that was tough to take.

  You are extremely correct. Alzheimer's patients in the early stages are very clever in the ways that they compensate. They all do different things. Some like Jan write things down or give a general answer. Dorothee would answer my questions with other questions. She would also act as though she didn't hear me when it was quite clear she did, so I would ask the question again. Unfortunately, this will only last for while, and then Jan won't be able to make the notes or have the ability to answer the simplest of questions. This took Dorothee about two years before she wasn't able to compensate anymore.

  It was about this time that I realized how the personal toll on me was building. I was now the living embodiment of the Alzheimer's book title: The 36-Hour Day. The days felt like they were very much 36-hours long, or more. I couldn't change the amount of care that Jan needed, and yet I needed a break to get back my own energy.

  Dick told me about his going away on a trip, taking a break from being a full-time caregiver and how he found it rejuvenating. I decided to try the same thing, even though I was uneasy about leaving Jan. Yet, this needed to happen. It was the beginning of acknowledging my exhaustion and, while I still didn't see it as clearly as that, I at least understood the need for a change.

  The opportunity came because I had a problem with my eye. I had surgery done in San Francisco, and the doctor wanted me back for a follow up exam. I booked the flight but changed my usual habit of calling friends when I was visiting there. I didn't have the energy to face anyone, a sign of my tiredness. And I was also tired of talking about the changes in Jan to other people, dear though they were. Each recitation was a reminder of what was happening to her, and each reminder was about what I was losing. I needed a break from this, as well. It felt selfish but it was a much-needed physical and mental recess. It also meant sleeping for hours in a hotel, maybe watching TV, ordering from room service, and not talking.

  It was exactly what I needed. The world went on for two days without me. I slept a lot and walked a little, and allowed myself the intense pleasure of doing nothing. I thought myself wise, because I would come home rested and recharged and better able to care for Jan.

  Then The Disease crept in, taking advantage of my absence by taking Jan down a little more. The trip to San Francisco was a turning point, becoming the end game of how I was then caring for Jan. And it unfolded so innocently and amid my best laid plans for my absence.

  While I was in San Francisco, I had two women friends from the Beijing office come to the apartment and take Jan out for breakfast at our hotel coffee shop. One came one day, the other the next, and my intent was both so she would have company and make sure she was okay and also to check that she had taken her pills. They were loaded in a day-by-day dispenser that stretched across the week.

  How clever of me, right? It set my mind at rest knowing Jan would be monitored. Upon my return, I discovered that my clever plan was a flop. While I was gone she took all the pills out of their compartments, the entire week's doses, and rearranged them. There were too many this day, not enough for the next. The friends couldn't know this, since their job was to inquire whether Jan had taken her pills, and Jan confidently answered both days, “Yes.”

  Changing the pills was new and dangerous behavior for her. My day job was often about traveling, and now I realized I couldn't leave her alone for even a day because she might re-do her pills again.

  And even though I knew better, I was still surprised at how changes could happen so quickly, and how I was caught in this constant struggle to accept, adjust and surrender to another reality-adjustment, another new normal. And there was a new normal I now had to accept.

  It was time for Jan and me, who seemed to have everything we needed by just being together and who cherished our alone time, to realize that we could no longer have that. I needed to make another change—a full-time live-in caregiver. I'd reached the point where I could no longer trust her with her own pills.

  The next phase of my caregiving job was now about finding the right person who could move in and help me with Jan. And even though I knew what had to be done, another part of my brain ached over yet another ending of Barry and Jan. But if she could no longer be left alone, then I could no longer care for her by myself. Our Barry and Jan private life … what nourished and delighted and sustained us … was ending. Not changing, not shifting, not adjusting. Ending. And not only would we never get it back, this ending was but a prelude. There were more endings out there, and I needed to face each new one, to incorporate and adjust. More than anything, I needed time. But The Disease was accelerating. It didn't care how fast Jan was changing. It set its own pace. It moved at its own time.

  Maybe it sensed victory as it robbed her, and that made it hungrier to claim more of her ever faster—
quickly and without mercy. The Disease mocks not just the one whose mind it is stealing, but the others around her trying to fight back.

  Only now there was no fighting back. The retreat had begun.

  TIMELINE

  Fall, 2007

  Barry's update to family and friends

  Jan had her annual visit to the neurologist where she took what is called the Mini Mental Test. It checks for memory, cognition, thinking processes, etc. The highest score is thirty. Anything below twenty-seven indicates trouble. Last year Jan scored fifteen and this year it dropped to six.

  The loss of memories from what we do during the day is incredibly sad for me. I try to plan special things to help her. For instance, in the roughly four weeks we spent on vacation in northern California, we dined with friends every night but one. I wanted Jan socializing to the hilt. Yet when all was said and done, much of it was lost to her. “It's just a blur” she said one night about what we had done that day.

  Her once endless taste for travel is drying up because it is hard for her to remember where we are if we are in strange surroundings like a new hotel room.

  She remains constantly cheerful and upbeat, which is wonderful and yet, in some way, makes it worse. It is a reminder of what a sweet and optimistic person she is.

  We have entered the “I don't know” chapter. I don't know what Jan will be like when she wakes up, or when I come home from the office, or in the evening before or after dinner. The things I am seeing are bewildering and confusing and, for her, frightening with fewer than ever words to express herself.

  This is prompted by a change in our reality. We are now joined by a live-in caregiver, Diane Malone, who flew with us to Asia from her home in Tacoma when we returned from the US in mid-October. Diane is amazingly calm, with wisdom that comes from her experience as a nurse in everything from frenzied military medivac C-130 airplanes in the Persian Gulf War to the gentle calm of working in an old people's home.

  Having a caregiver meant telling Jan that she can no longer go outside alone—not to the grocery store, or the gym, or for a walk. It triggered a combination of rage and fear as she understands and loathes herself (“I don't want to be a burden”) for what is going on.

  The rage is something I have never seen in her—a fist clenched, red-faced, physically uncontrollable shaking fury. It was first aimed at Diane who personified the new limits to her freedom, but now she realizes (sometimes) that it is really anger about having Alzheimer's. It comes and goes, this thunderous or deeply sullen rage, often triggered when we tell her that she can go anywhere but now she must always be accompanied. The fear is, in truth, harder for us all. She knows or senses what she is losing—memories and her freedom—”I'm losing my mind, aren't I”— but not how to stop it or fight it.

  Diane and I tell her that going out, seeing new things and having new experiences will stimulate her brain, working it like you work a muscle to get it into shape. We call ourselves—Jan, Diane and me—the “Jan Team,” working together. Sometimes we widen the team so it includes all of you, the people of her life, often by name. She understands and embraces this … sometimes.

  When the understanding and the comfort of remembering friends fades, the only thing left is fear. Then all she wants is to cling to me, as if somehow my arms and closeness can protect her. I hold her a lot these days, whenever she needs it. Sometimes, it seems like I am holding a terrified child afraid of lightning flashes, and storms, and things she can't understand.

  Her fear is contagious. I feel it looking into her face and knowing that some part of her is no longer there, that she is no longer my Jan except when she is—and then not knowing when it will be gone again. After morning coffee? Before dinner? All day? Not today?

  Most of my tears these days come from this: for the first time, I have seen her panic as she feels herself change, as she grasps tightly to memories and experiences, as if holding on means they won't go away, and she begs within herself to somehow get better so she can go back to being the independent optimist she once was.

  Part of me wonders if I should share these personal thoughts with you. Please understand that this is incredibly hard for me. But those who have gone through this warn me of the danger of the stress to the caregiver. I've resolved to remain as open as I can allow myself to be, if only because I'll be of no use to Jan if I falter under the pressure of what's going on.

  I've written before about losing my best friend as Jan changes. The other day I realized something else that hit me hard. It is not fear—fear has been my midnight companion since this started. It is that given all the time we spend together, I am increasingly alone. I will hold tight to her hand for the whole journey, but all my tears cannot stop that she is moving ever slowly … away.

  We do a lot of explaining reality these days—explaining the new circumstances, why we have a caregiver, why she can no longer go out alone. And I hold her, even though I can no longer protect her against the terror of knowing.

  ~Barry

  10

  “Dare to reach out your hand into the darkness, to pull another hand into the light.”

  ~Norman B. Rice

  Now We Are Three

  On a lovely crisp October day in 2007, United Flight 876 from Seattle glided gently onto the runway at Tokyo's Narita Airport in mid-afternoon. It fulfilled the measure of what I consider a good flight—it was perfectly uneventful.

  Jan and I had made this trip many times before. Only this time, it wasn't routine. This time we were not two. We were three because retired nurse Diane Malone came to Asia as our new live-in caregiver. I reached the point where I knew I could no longer leave Jan alone, even when I was at the office, and certainly not if I needed to travel somewhere for days (or weeks) on end. And travel without warning was a normal part of my job.

  One big reason for full-time care was Jan's increased disorientation. She would rarely leave the hotel in Beijing, except with the “Jan Buddies” I hired on an occasional basis, so that wasn't a worry. But in Tokyo, she would still get into the cab by herself and tell the driver in Japanese how to take her to the grocery store several neighborhoods over that specialized in serving foreigners. And lately she began buying the same things over and over. We had enough bottled water in the pantry to float a Navy destroyer, but still more would be delivered after each shopping trip. I wondered how soon it would be before she got to the grocery store and forgot how to tell a Japanese cabbie how to get her home. There was no answer. I would only discover after it was too late, after she lost her way or just got lost, period. I couldn't risk it. It was time for outside help.

  I advertised on craigslist in Denver, CO, and Portland, OR. Denver because my daughters could handle interviews and Portland because I had always liked the city and felt I could find someone nice in that nice place. Excuse the lack of logic here, but I was floundering.

  There was one applicant who was young, about eighteen or twenty, and was a swimsuit model. “Could I take time off if I get a modeling gig?” I decided that when moving another woman into your house to care for your wife, a swimsuit model was probably not going to be a confidence builder for Jan.

  There was another applicant who broke up with her boyfriend and thought being in Asia would help in her healing process. Thanks, but no. Others were better, real candidates, and we interviewed and checked references. Then we found Diane, who lived in Tacoma, WA. Again, it was Dick, my Alzheimer's Buddy, to the rescue. He put out the word to people in the local Alzheimer's community that someone in Asia was looking for a live-in caregiver, and it reached Diane from a friend of a friend. If there are miracles, was this not one?

  She was amazingly qualified, having worked in long-term care facilities. As a Licensed Practical Nurse, she had done ward duty and understood not just sickness, but the patience that any nurse needs in dealing with the ill and their families. She also had a successful military career, serving thirteen years in the Air Force Reserve, and nine years in the Army National Guard. Her duties co
nsisted of supervising teams doing medical evacuations (medivacs) from places like the Middle East during the first Gulf War, and a volunteer stint in New Orleans with the Red Cross in the aftermath of Hurricane Katrina. I had to wonder why in the world she wanted to work with me for what was little more than slave wages. The answer turned out to be that she was not only between challenges, but she also had a sense of adventure. Living in two Asian cities—Tokyo and Beijing—sounded irresistible to her.

  I explained to Jan that Diane was coming to live with us to help out. At first, it went well, starting from that October day when we landed at Narita and headed for our apartment. In Tokyo, Diane slept on a futon in the third bedroom. In Beijing, since we only had a one-bedroom apartment, we found someone who wanted a roommate for an apartment nearby. I paid Diane's half of the rent and this meant that we were settled in both cities. I congratulated myself on getting it right.

  From October to Christmas, Jan was in the mode of what Diane called “touring and showing you my city.” Jan wanted to share Tokyo and Beijing with Diane, the way any gracious person would treat a houseguest. I have pictures from those days, Jan and Diane wandering through parks and sightseeing. At this early stage, the idea of a live-in caregiver didn't bother Jan, although there was finesse needed on everyone's part. Diane suspected what I didn't; that these early days were a fragile honeymoon. Jan didn't really understand yet that we had a live-in caregiver because she was faltering. We got a break from the season because the fall was warm and pleasant, and Jan loved the excursions with Diane. Jan had always been the first in line for sightseeing or visiting a new museum, so life hit a pleasant stride.

  Diane remembered those early days this way:

  “When Jan didn't want to venture out I would ask her about the collection of artwork from various parts of the world that filled the apartment. She explained, in great detail, where each piece came from, and always with great joy. I laugh at the memory of her showing me the four-foot tall women carvings from Bali. Now these women aren't that appealing, but Jan had wanted them for the beautiful carving. When I said, “but Jan these women are not all that attractive,” she would answer, “Oh, I know, but aren't they a hoot to look at!