Jan's Story (11 page)

There are changes I know are coming and I dread; and one has now arrived. Jan is losing her long-term memory. One of Jan's favorite stories is about birthdays … her Dad, her brother Doug and I were all born on January 14th. She was amazed when we discovered this early in our courtship, and it remains her touchstone for why we were fated to be together. The other night at dinner she remembered that there is a “birthday” story and asked me to tell it because she could no longer summon up the details.

I am not sure about sharing these thoughts. I was taught as a good Danish Lutheran child that we just push on and not draw attention to ourselves. But some of you have suggested that knowing what is happening helps understand a disease that we are seeing around us more and more. So I bare something of me, and apologies if it seems too personal. I am not sure how else to share this. Through these past few years, I have lived by one mandate; Jan is paramount in all our thoughts and cares. She is the one with Alzheimer's.

My focus remains getting her good care and the help to battle this—such as having people like Diane, our live-in caregiver, who gets her out of the house and exploring new things. But this disease does not limit itself to one person. Quite the opposite—it takes from all around, especially from those of us too blind to see what it is doing to us. In this case it was my daughter, Julie, who saw and put it succinctly when I saw her over Christmas. She leaned across the table at lunch and told me I was “weary in my soul.” And she is right.

Part of it is the simple mechanics of running our daily life—I monitor and pay all the bills, make all the travel arrangements, gently make sure Jan has packed appropriate clothes for a trip, and help her choose from a restaurant menu when she gets lost somewhere in confusion and indecision. But my weariness comes, I think, from a darkness that I discovered is stalking me—loneliness. I have lots of friends. But I no longer have Jan. It sounds like a bad line from a movie. If only. I still remember the moment I knew that I wanted to be with Jan for the rest of my life. I was driving in a car after visiting her tiny little lakeside apartment in Seattle one evening when it hit me. In my memory, it felt like an earthquake, like something actually shook the car, and in fact, I had to pull the car over. I knew then—with total clarity and for certain—that I needed her in my life, that any sacrifice was nothing compared to being with her, so full of life. (And so darn cute!)

I hear people say that marriage is “hard,” that you have to “work” at marriage. I never felt, not one day, that I had to work at our togetherness. We were just … us. Sometimes it's easy for me to ignore what is changing because Jan looks so good. But I have realized that she is now someone I need to watch over, like I'm dealing with a child.

I am sorry if I sound somewhat clinical about this. I sometimes think the only way to get through this is by deadening my own feelings because they scare me. They have the potential to overpower and overwhelm me. I could spend every day in tears because there are plenty of moments of private agony and depression. But if I ever falter in front of her, Jan will feel even more frightened. While there are predictable changes, there is no known timeline.

Let's be clear here; Jan still bears the real burden of this disease. She must find ways to cope with the fear and confusion that she tries so hard to hide from all of you. And my focus continues to be on helping her, however I can. But Julie is right. My soul is weary, because I must accept that what I had is slipping away, and when she is gone, my loneliness will be forever.

~Best, Barry

“ANXIETY about facing another day and what the future holds. DEPRESSION begins to affect the ability to cope. SLEEPLESSNESS caused by a never-ending list of concerns. EXHAUSTION makes it impossible to complete necessary daily tasks.”
~From Ten Signs of Caregiver Stress by the Alzheimer's Association

People sent me articles warning of caregiver stress and burnout. This one was especially popular among Alzheimer's caregivers:

CHRONIC STRESS CAN STEAL YEARS FROM CAREGIVERS' LIFETIMES
Ohio State University, Sept 18, 2007

COLUMBUS, Ohio - The chronic stress that spouses and children develop while caring for Alzheimer's disease patients may shorten the caregivers' lives by as much as four to eight years, a new study suggests.

The research also provides concrete evidence that the effects of chronic stress can be seen both at the genetic and molecular level in chronic caregivers' bodies.

The caregivers also differed dramatically with the control group on psychological surveys intended to measure depression, a clear cause of stress.

“Those symptoms of depression in caregivers were twice as severe as those apparent among the control group,” said Jan Kiecolt-Glaser, a professor of psychology and psychiatry.

Kiecolt-Glaser said that there is ample epidemiological data showing that stressed caregivers die sooner than people not in that role.

“Now we have a good biological reason for why this is the case,” she said. “We now have a mechanistic progression that shows why, in fact, stress is bad for you, how it gets into the body and how it gets translated into a bad biological outcome.”

My friends saw what was happening to me from the outside. I did not see it from the inside until Jan faded again, and my deepening level of exhaustion could not be ignored. It began with a behavior I had seen once before in Jan, only now it started showing up more and more frequently.

Sometimes, and always unpredictably, when she would get up at night to go to the bathroom she would be hunched over and muttering nonsense to herself. Her head was drooped down, her eyes downcast and unseeing, and she would shuffle like an infirm, elderly woman. Most dangerous for her was that she had no sense of balance or the automatic reflexes to protect herself. If she fell, she wouldn't react and put a hand out to break her fall or keep herself from hitting something. There was no instinctive sense of self protection and no awareness of any danger from falling.

I would jump up and get in front of her, holding her hands in mine as I walked her to the bathroom. When she was finished, I would guide her slowly back to the bedroom and help her carefully roll into bed. Even this, she could not do alone. And then I would try to go back to sleep.

The frequency was increasing, and the unpredictability meant that every time Jan got up at night, two or three times on average, I woke up on instant red alert. “Where are you going?” If she could answer coherently—”To the bathroom”—I knew it was okay, and I would roll over, wait until she was back in bed and close my eyes and hope for sleep. But if it was the nonsense muttering and the shuffling, I had to jump up quickly to help and protect her.

With this new behavior, which had me up several times a night, it meant that between work and home, I was now working a 24/7 shift. On top of that, I needed to be Mr. Cheerful when I walked through the front door to make sure I kept Jan perked up.

My bad work days had to stay at the office because I could not come home in an unhappy state. That might send her downward as well. My job was to always be upbeat and joking and hope that rubbed off on her. “Honey, I'm home,” I would shout, mimicking those 1950s sitcoms. And I would jokingly ask for my 1950s martini, just to round out the act. Jan would always laugh.

I would be chatty at dinner, carrying on more of the conversation as Jan lost her ability to make coherent sentences. Diane and I would talk and when Jan jumped in, we would listen carefully and agree. Even if her sentences made no sense. After dinner, it was on to Jan and Barry time—watching a movie and eating popcorn.

I ended up deciding each night what to watch, usually something from our collection of old black and white movies like
The Thin Man
so we could pretend that Jan and Barry were suave and witty like Nick and Nora.

It was a treadmill, always moving, always demanding. And then there was the growing emotional searing that came from seeing Jan leaving me in front of my eyes. There were times when I decided the only way through this was by deadening my feelings because they scared me. My emotions had the potential to overpower and overwhelm me. And this new night and day, and back into night life was draining my reservoir of energy that I needed to face any new wrinkle.

I could have spent every day in tears, for what point was there in going on? In my mind, going on was about Jan going down. But I couldn't falter, and I couldn't let Jan ever see my tears because it would frighten her. She was beyond understanding difficult emotions, but she would get the message that tears were about my sadness, and this was a message I vowed not to send.

It was Diane who came to my rescue. She suggested that I go out alone once a week for dinner with friends, and she would stay home with Jan and they could watch a movie. Great idea. Except by now, I had no more friends. We had stopped going out long ago. Most of the people we used to see had long since moved away, and the effort of starting over with new people seemed too complicated. I didn't have the spirit and certainly not the energy.

Her second suggestion turned out to be a godsend: Once a month, on her orders, I took a two-night weekend break at a nearby hotel. On Friday afternoon I checked in, usually as soon as the room was available. These were my two days of not waking up because Jan had stirred and not having to constantly put on my happy face. It was not exactly an exciting time by most standards but, in my exhaustion, it was a blessing. I would sleep for ten or twelve hours at night and often nap during the day, and then come home Sunday afternoon.

Diane sold the idea to me by warning that caregivers can collapse. “Before you can help Jan,” she counseled, “you must take care of Barry.”

Diane had the experience to see what I could not, that Jan was like many Alzheimer's patients in wanting her spouse, the man she was used to having close to her, around especially at night.

Jan was her focus, but she began to get worried about me. “The overeating, drinking, lack of exercise and lack of socialization are taking a toll,” she told me. If I did not get rest, Diane warned, I would do what so many other caregivers do … forget to care for myself while giving my all caring for the person I loved. And there would be consequences for me.

At first there was resistance to taking the weekend off. My excuses were lame; I was “doing ok,” or “the weekends were laid back enough,” or “what would Jan say if I'm gone again?” It took just one weekend, and this was a done deal. After that, by Friday of “my weekend,” I was at the hotel at 3:01 p.m. to check in the moment they would allow me.

Something odd happened one weekend. Sunday rolled around. The room was typical for a Japanese business hotel, so small that I had to duck getting out of the elevator and out of the shower in the room. The space was cramped, but I didn't care. It was quiet and it was mine, and I had no caregiving duties to perform.

But that weekend, when checkout time rolled around, I did something I had never done before; I didn't go back home. I went to the office. I wrote a script that I had started on Friday and could easily have finished Monday. Then I cleaned out a desk drawer that had been messy for several years.

And then I asked myself—why the hell was I sitting in the office doing stupid chores on a Sunday? Myself answered— because I was not anxious to go back home. Maybe that was proof of how badly I needed some time off. But more upsetting was the sense that I didn't want to re-enter the world of Jan, and The Disease, and the Anger Monster.

I felt no guilt about being away from the apartment for a few more hours because I knew Diane would take excellent care of Jan. I felt guilt about
not
wanting to go back. There was shock about feeling this, a sense that I was finding it harder to be around Jan. She was the woman I cherished through good times and bad. Now I was finding that the frustration of always losing to The Disease might be my defeat.

I vowed to keep going, just keep going. And then my resolve began unraveling. It happened one Sunday afternoon, when I came back from a weekend off. Diane remembered having an alarming thought. “I almost turned you around and sent you back to the hotel for another night,” she told me later. She told me I looked tired and anything but rested from a weekend off which was all about getting rest.

That was Sunday. On that Monday I could not get out of bed. I was too tired, and I had never felt like that before. My body felt like a dead weight. I called the office from the bedside phone, said I was ill and immediately fell back to sleep. Through that day I napped fitfully for about eight hours. I was concerned that I wouldn't sleep that night. I needn't have been. I went to bed early and slept a further ten hours.

It was just one more sign that I was in trouble. My weight was up because food was some kind of emotional salve. Living with Diane, a nurse, meant regular checks of my blood pressure, and it was climbing alarmingly, always up a little more than the previous check. I was drinking too much as well. It was a way of self-medicating, and I knew it. I tried to care, but I couldn't. It was like the food was something necessary to get me through today. I'd worry about what it was doing to me tomorrow. Tomorrow, of course, became just another today to get through.

My bosses in New York couldn't help but notice the weight gain, exhaustion, tiredness, and rage, and that was putting me in trouble at the home office. I was in a business that did not favor overweight, aging men who were difficult for crews and producers to work with.

Because I was distracted and exhausted, the scripts I pounded out lacked enthusiasm. Writing is the most sacred part of the job to me—the achingly, thoughtfully sought-for words that communicate what I saw to the person watching—and I was faltering even in this, the part of my craft I had worked all my life to perfect.

And there was the never-ending loneliness. The intimacy was long gone. Jan was no longer a lover, she was now someone that I needed to constantly watch over and care for.

In the midst of this, I had a flashback while working on a routine story. It was a classic symptom of Post Traumatic Stress Disorder. In this instance, an innocuous event triggered memories from covering the Asian tsunami when we were off the coast of Thailand. The tsunami hit on December 26, 2004, and I was in Beijing with Jan and the girls. I had managed to get them all together at Christmas. But then the phone rang, and I was soon on a plane.

It was one of the hardest stories I had ever covered. The death toll was highest among children because they were least able to run, or even realize what was happening. Many were out playing on the beach.

We were in Phuket, Thailand, traveling up and down the surrounding areas that were hardest hit. It wasn't long before we were surrounded by desperate parents and grandparents holding up pictures of children, hoping that somehow their missing kids were in a hospital or had been airlifted out or were in the makeshift refugee camps. But, of course, most were not. Miracles were in short supply.

Buddhist temples became makeshift morgues. Bodies were laid out on the grounds in hopes that family or friends might identify the corpses. I remember seeing many of the dead with their hands raised, as if they were trying to fend off the waters and what would be, for most, a terrifying and certain death by drowning.

One day, as part of our coverage, we were in a boat headed for a story on reef damage from the tsunami. We thought it would be a chance to get away from all the death we had seen. Then, without warning, the boat was suddenly plowing through a field of bleached and bloated bodies that had been washed out to sea when the tsunami hit days earlier.

Now, a year or two later, those horrific scenes flooded back to me in terrifying flashes and sent me racing to a therapist. The PTSD treatment was so intense, quick, and effective, that I failed to take the extra time needed to face up to my ongoing battle with depression, that horror that Winston Churchill called his “Black Dog.”

I was on emotional overload and physically exhausted. I was depressed—God knows I can recognize the symptoms—but I just pushed it away. It was all too complicated to worry about just then. Just get me through the immediate PTSD therapy, and life will be better. I didn't have enough emotional reserve to worry about something far bigger and much deeper. And I didn't want to lose my focus on Jan.

I knew ignoring the depression was unwise. Or a better word might be stupid. I could see what was happening to me, where I was headed, and I knew it wasn't good. In truth, I coped by not thinking about the future. Every day was a victory if I just kept moving my feet, kept coming home and cheerfully yelling “Honey, I'm home!” and making Jan laugh with the martini joke.

But the stress of caregiving is well documented, and the long-term effects range from dangerous to fatal. I was now in a legion of stressed out people where one in ten caregivers say their own health is worse because of what they must do, or force themselves to do. Consider just these two sobering research notes from studies quoted by the Family Caregiver Association (
www.caregiver.org
)

•    Higher levels of clinical depression are attributed to people caring for individuals with dementia (such as Alzheimer's). Studies show that 30% to 40% of dementia caregivers suffer from depression and emotional stress.

•    In 2005, three-fifths of caregivers reported fair or poor health status, one or more chronic conditions, or a disability, compared with one-third of non-caregivers. Caregivers also reported chronic conditions including heart attack/heart disease, cancer, diabetes and arthritis at nearly twice the rate of non-caregivers (45% vs. 24%).