Jan's Story (18 page)

I wanted to be careful, and I needed to trust my own feelings. The trouble was that my feelings were having a raging debate. Part of me worried about how much I needed from someone, how wounded a bird I had become. Was it too much? Did I even know?

The other part argued that there was potential here, something special about this woman. In the end, my intuition and I came to an agreement … that maybe I could fall in love again and with her, and that meant I was ready for a new beginning.

Ready yes, but able?

Therein lies a tale.

Dear Barry,

Healing is finding peace with what is, while still cherishing all the rest. It will come, give it time. You never forget, you never stop loving and yearning, but there is still joy to be discovered. I was thinking about survivor guilt this morning on the way to work. Everyone I know who has been through the loss of a loved one suffers from guilt for something—some slight, a cross word, a promise broken, etc. But guilt is our way of believing we had the power to change the outcome if only we had … done something more, said something different.

We can't admit, at least for a long time, that we were powerless, utterly powerless in the face of the tsunami that hit us. For now, we are learning to be survivors, caretakers, the ones left standing.

“All changes, even the most longed for, have their melancholy, for what we leave behind is a part of ourselves. We must die to one life before we can enter another.”
~Anatole France

It started happening when I would close my eyes and try to sleep … a floating, queasy sensation of being in the air, adrift with no firm place to stand, nothing to hold on to. And the loneliness came with it, washing over me. It didn't really matter where I was; in a hotel someplace in China, Indonesia on assignment, or in the Tokyo apartment surrounded by familiar things with the darkened city laid out below.

I tried to fend it off by drinking too many glasses of wine, Scotch, or vodka before going to bed. Was there not an anesthetic for my unquiet mind? Sometimes when sleep wouldn't come and the feelings wouldn't ease, I would restlessly turn on the bedside light and read a book, not because I cared, but to distract from what came when the eyes were closed. Words would blur on the page as the questions returned … was it normal to want touching and being caressed? How many million poems and plays have been written about this?

My contemplation was simpler and not very poetic. How many more nights, I would wonder in the darkness, were left in my life and would they all stretch for hours like this. Was it right or wrong to want something different, someone in this bed with me? Why weren't there any damn rules?

And there were other hauntings that came out when the shadows ran deep. As Jan slowly slipped away, so did our intimacy. There were reasons for this. She had faded until she no longer seemed to feel the pleasure or have the interest in our togetherness. So making love left me feeling not satisfied, but selfish, that I was taking from her and she could not have as much back.

Second, there was my increasing sense of being a parent watching over her like a child. This can be numbing and repulsive to one's desires, no matter how much love is involved, or for me, the remembrance of what our love had once been.

What those around me didn't know was the effect this was having on me. It loosed the terrible part of every man that is his sexual insecurity. I discovered that I could not let go, could not release, could not have an orgasm when I was making love with her and we should be as one.

The wise advice is that you shouldn't hide things from those trying to help you, such as a friend or a therapist, a pastor or a priest. For the first time in my life, I ignored that. I was a man who could tell the entire world stories of other people's intense pain or joy but could not share with anyone this depth of my insecurity and the embarrassment of my own failing.

But at least when Jan and I still lived together and we were in bed at night and she was warm and next to me, I could listen to her soft breathing in sleep and I could drift back in time and memory. Across the silver screen of my midnight dreamings, I could replay how I had once thrilled and been thrilled by her. Memories are rich and good, but they cannot nourish forever. A silver screen can flicker and the moving pictures of the mind can dim.

By the time I placed Jan in the Alzheimer's facility we had not, as they would put it in a gentler era, lived as man and wife for so long that I couldn't recall with any accuracy how long it had been. Certainly a few years. Now that she was gone and I was alone at night, my mind would taunt me: You have lost everything, including that which makes you a man.

There were answers to the sleepless, endless, dark shadowed nights. One was to accept and live as I was and endure these nights forever. The other was to give life another try, and that was why I reached out to see if there might be someone else.

And now that I thought I had found just such a lovely person, it was time to decide if I dared or even could reach for just a little more. These are the things I debated and rolled about in my conscious mind. What I didn't realize was that there was a hidden danger building inside me, that the years of dealing with Jan had created a huge reservoir of traumas that would demand attention or else would never heal.

I had gone through years where each day began as a question mark, and each night was either relief that Jan was stable or sadness that I had spotted some new decline. Watching her falter, like the days when the unreasoned anger would seize her, fed the trauma of knowing I had lost that much more of her and of us. Then there were the intense, searing traumatic moments … saying goodbye and getting into a car and leaving her behind in an assisted living facility, flying back to Asia alone and realizing that we would never be together again, being in an empty apartment that she once gaily filled and that she would never even see again.

There is a theory of trauma therapy suggesting that we humans store traumatizing events in our bodies, while other animals can release it immediately. An animal that has escaped sudden death literally gets up and shakes it off, rejoins the herd and goes on about its life basically and instinctively back to normal. The trauma is gone and, with it, the fear. Humans, because most of us have not been trained in how to let it go, will store the trauma inside. It may take a new or different event, sometimes years later, to release it.

You might or might not believe the theory. Some don't. I do. And with reason. It unfolded all at once; the sadness inside, the terror of no longer being a real man, the trauma of loss, the wondering if there was enough left of me as a person to persuade someone new that we could create something together.

In the many phone calls and e-mails with this someone new, there was a potential relationship building. She and I had shared similar emotions about loss … her husband to accidental sudden death, Jan to a wasting disease. It brought us together first as friends. She offered gentle guidance on surviving and rebuilding drawn from the ashes of her own grief.

And there were other things we developed that must seem silly to some. For me, one was the long forgotten pleasure of calling and sharing the events of the day with someone else, each of us talking about work or what had happened in the world. I hungered for conversations so normal, and for the celebration of ordinary life.

In time, we wondered if there could be more. And all this time, hiding unspoken in the background, my doubt that even if given the chance, was there was still a man, a lover, inside of me. And in more time, with passing months, with hesitation and trepidation and a thousand more telephone hours discussing the consequences and the pleasures, wondering who would congratulate us and who would condemn us, there was finally a day when oceans and continents were crossed and we were together. And with it, almost naturally, returned what I once feared was lost to me … the intensity of intimacy.

In that moment and then the sweet afterward, in the holding tight and the catching of breath, there was relief giving way to the sheer wonder of what had happened. Did this mean that there was, now, a chance for a different future? Could I have this woman in my life and would she have me? What extraordinary possibilities seemed there, just right there in that moment, for the dreaming and the reaching and the taking.

And then in stalked The Disease. It struck when she was folded into my arms. It came, as so often, with brutality and without warning. It happened within seconds. My body began vibrating, from head to toe. Let me be clear—not shake or convulse, but a steady trembling or vibration. She and I had talked before about how trauma escapes out of the body and one rule is, don't try to stop it. If you interrupt it, experts say, the trauma release goes back to zero, and it starts again.

She held me tenderly, but very carefully. “Do you feel that, sweetie?” she asked in just barely a whisper, masking what was clearly her growing alarm.

“Yes.” I was as alarmed as she was since I had never felt my body tremble like this before. Tinged with the fear was embarrassment, that at this of all moments, I would have some kind of reaction that I couldn't understand and could not explain.

There was a moment of pause, of her holding my trembling body, of letting the trauma find its way out. “Do you know why you are trembling?”

I had no answer, but I wanted one, as my body rocked against her and I could not stop it. As I searched for some explanation, I began thinking about how I had tried caring for Jan to protect her from The Disease, had helped Jan cover up the effects and had pretended with Jan for years that nothing was different. At times she believed it. And at times, so did I.

And as I thought, I began weeping. Not just crying but weeping so hard it was difficult to breathe so that I could weep even more. It left me choking for air. I covered my face with my hands. I pressed harder against this bewildered and scared woman who now held me, trying to offer comfort in her softness and her warmth.

My body was both trembling from the trauma and shaking back and forth from my tears, and I was struggling, trying to make words through this. “I was supposed to protect” … sobbing so I could not talk for a moment, then trying to get a breath … “protect her and I didn't” … then unable to talk as more tears poured out. “It was my job, my one job … to care for her and to protect her.”

The same words kept pouring out of me … love meant protecting Jan and she trusted me, but for all my love, I had failed her. Because of that, in my mind, I had failed as a man and a husband. It would be good to make up elegant phrases with more depth or meaning, but in the midst of trembling and tears, all I could do was say it over and over … and over. I was a man, a man's job is taking care of those he loves, and I had failed. And look what my failure had done to Jan.

And quietly and generously, this woman who thought as I did, that we had a chance at our own love, gently shared what should have been our moment with Jan. Trying to ease my agony, she told me that I had done nothing wrong, that I had made no mistakes that made Jan's disease worse, that I did not cause it.

Words. Sometimes they mean everything, sometimes nothing. Her words, so sweet and reassuring, could not at first penetrate. In time, I calmed down. I rolled over and found tissues and blew my nose and rolled back to hide in her arms and her tenderness … and it started all over again. I could not … damn it! … could not stop. The weeping overwhelmed, the tears poured, and I was shaking again. And then, I would gain control. And then, lose it.

When we envision scenes of the wonder of coming together as two people discovering their chance at love, we have visions of fireworks and, if we are well trained by Hollywood, we hear the swell of an orchestra. We do not see the man suddenly dissolve into trembling and tears.

But so it was. This was release from years of not having been a lover, and of trauma stored in my body that was letting go. And there was also a desperate effort trying to let go of the guilt … my merciless unforgiving guilt … for failing Jan.

We often tell ourselves that it is better to let it out. Well, this was letting it out; this was release but with torment. It was not relief, it was agony.

In time I finally quieted, and we talked as she held me. I put my emotions into words, and that helped. We talked of my guilt and how, in my mind, I needed to somehow come to believe that I had done nothing wrong in my caring for Jan, that The Disease could not have been stopped.

It was good making it into words, but it did not erase the emotions and the feelings of guilt. That is not so easy. Parts of it still remain inside. More will come out in time, and at a time probably not of my choosing. I call Alzheimer's The Disease. I capitalize the letters because, to me, it is a viable and known enemy. In my mind I give it face and form. And one way to beat The Disease is to keep going when The Disease is taking Jan down and stretching it tentacles trying to drown me as well.

The Disease and I both know this. It is the arena of our personal war.

My current situation is not unlike yours in that I have met someone fairly recently and have had to work through the problems of being a person of uncertain status. I imagine we could spend a long time discussing the unique position of loving one's wife while loving another person as well.

Look forward to talking with you.

~Jim

“The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.”
~Marcel Proust

We are nervous at our first meeting, sitting in a booth in one of those upscale chain restaurants that dot American cities. Outside it is well over ninety degrees. Inside the air-conditioned air has a dry chill to it. Around us the waiters flitter as they are trained to do, offering refills or asking if everything is okay.

It is a normal place on a weekday afternoon. But we are not normal. In this little booth there exists a private universe unknowable to many of our friends and even family. I look at this other couple and see a mirror I cannot find anywhere else. That is why I have flown across the country to sit in this booth and see if there is another human being on this path who understands.

The admission fee to our tiny universe is costly. To sit in this restaurant booth, you must bring doubt, guilt, a search for moral clarity without clear guidelines and most of all … a spouse with Early Onset Alzheimer's Disease who is now in a care facility.

There is one more price of admission; having someone new in your life that you now love in a world where some will call you an adulterer who has broken his wedding vows, and paint her with a Scarlet A.

And that woman must have the self-confidence to face the accusations of being “That Woman” that some will say lured you from a sick wife, stole you away from your role as caregiver, found you at your emotionally most vulnerable and marched in to plant her flag. “That Woman,” the accusers will say with fingers pointed at her, “is a heartless gold digger.”

There are ground rules for our meeting. They cannot be identified using either of their real names or the city where they live. I will call them Teresa and Jim. They are nationally known and accomplished in their respective fields, she as a writer and college professor and he as a health care professional specializing in geriatrics.

They ask for anonymity because there are those in their professional lives and within their circle of friends who will not see redemption in their love, but the violations of sacred marriage vows.

Weren't those vows clear enough when we stood at the altar and pledged … 'till death do us part?

“But,” Jim asks, leaning forward a bit. “When is the death of a marriage?”

This will be a central topic during our time together, and tied to it, is the question of how Jim and I define ourselves. We don't fit any category—we don't feel married, widowed, or single. Some may call us separated, but we are not that either, nor are we divorced.

Jim labels us this way: “You and I are persons of uncertain status.”

And that leads to critical questions that neither of us ever dreamed would define our lives, but now must be debated and answered with thought and care.

First: Are we still in a marriage?

Second: Have we broken our wedding vows by falling in love with another woman?

“Society is becoming more accepting that the definition of a marriage is a relationship,” Jim says.

He points out that more and more states now accept as law that two people of the same sex can be married. It makes marriage not about gender, but about the existence of a conscious relationship between two people. And when the consciousness is lost on one side, usually through death, the relationship ceases to be.

Except that with Alzheimer's the consciousness dies inside the brain while the body lives on for some unknown period of years. Like Jim's wife, Jan is still alive. Jan still gets her hair cut or her nails manicured as long as someone walks her through the process. She still loves Barry, although she no longer recognizes that I am that person when I am with her. Her Barry lives in photographs of a younger us, or long-ago memories.

Jan lives alone in a world that I cannot know or penetrate, and can only guess how or if I even affect it. She is gone to me.

Jim asks, “Is that still a marriage?”

He brings up an idea that he calls drama. It is what we craft in our minds about our own lives, how we plot our personal days and destinies and what Shakespeare meant when he wrote:

“All the world's a stage, and all the men and women merely players … they have their exits and their entrances. And one man in his time plays many parts.”

It's what makes someone a functioning person, says Jim, a person who can make decisions and choices and then respond and react.

Plotting our lives with our own decision making is as basic as deciding what to cook for breakfast, how to handle a meeting at the office, a coaching problem at Little League, deciding whether to make a U-turn or go around the block.

“And when called upon to do something they cannot do,” Jim says of people, “they will do what they can.” He pauses to emphasize this next key thought: “
If
they can do anything at all.”

This is the axis on which our morality now turns, as defined not by us but by The Disease. Because of Alzheimer's Disease our wives can no longer maintain their half of the conscious relationship that is critical for what we call a marriage.

“So,” he asks, “can you have a marriage without a relationship?”

As I sip coffee, Teresa interrupts my thoughts with one more vital piece of the jigsaw. “You are not the ones who left the relationship,” she reminds Jim and me. “Your wives left you.”

Teresa reminds us of this story:

     
(CBS/AP) The husband of retired Supreme Court Justice Sandra Day O'Connor has struck up a romance with a woman who is a fellow Alzheimer's patient and lives at the same assisted living center, according to a television news report. The retired justice isn't jealous about the relationship and is pleased that her husband is comfortable at the center, the couple's son, Scott O'Connor, told KPNX in Phoenix in a broadcast that aired Thursday. “Mom was thrilled that Dad was relaxed and happy,” Scott O'Connor said.

     
John O'Connor was diagnosed with Alzheimer's 17 years ago and was sad when he moved into the assisted living center, his son said. “Forty-eight hours after moving into that new cottage he was a teenager in love,” Scott O'Connor said. “He was happy.”

(
http://www.cbsnews.com/stories/2007/11/13/national/main3494 982.shtml
)

The world generally praised the amazing love of Mrs. O'Connor accepting that her ill husband, lost in Alzheimer's Disease, can find some form of happiness with another woman.

“But,” asks Teresa, “what if it had been the reverse and it was Sandra Day O'Connor who found a new love while her husband is suffering from Alzheimer's? The reverse would not have been okay to many people.”

Jim and I are struggling to write a code of conduct that helps us honor what we have now found … love, companionship, a renewed sensual worth, laughter and excitement in learning about someone new that we love as we leave behind the tears.

Jim put it like this, “We want to claim and create our own realities.”

Because The Disease takes, demands, and steals, we can no longer live in the world most people inhabit because their morality is not our reality.

That is the key reason why Teresa wants anonymity. Those who encouraged her to go find happiness may turn on her for finding that happiness with a “married” man. She tells us how she didn't want to become involved with a man who had been divorced. “I had found that usually the divorced men I encountered were the ones who were at fault in the break-up of their marriages, and they hadn't learned from it. Or they were often, to use the cliché, emotionally unavailable because of their anger at their ex-wives.”

She and Jim met because they were members of the same internet dating site. “Initially, when Jim contacted me and said that he was separated, I rebuffed him and wrote him back to contact me if or when his situation changed, thinking that he was the classic adulterer looking for an affair. It was only after he wrote back with a more detailed explanation of the circumstances of his involuntary separation that I was willing to meet him, although I still had many qualms about the situation.”

They were both nervous and a little dubious at their first meeting. Jim remembers looking at her and thinking, “Well, it's only an hour out of my life.” And then they started talking, and the first meeting turned into hours of conversation that led to seeing each other again and again. Teresa found in Jim's character a key reason that she could trust him and wanted to make her life with this particular man.

“Here is a man who cared for his wife even when it was dangerous to his own health,” she says. “This is a man who can give everything because he loves a woman. It shows how deeply he can love. We should celebrate these men, not condemn them because their wives left them and they found someone else.”

What she says is true. Jim and I cared for our wives out of love. When the person we loved went away from us, not in a day or a week, but over years, we never dreamed we would find that kind of love again.

Jim shared his years of being the main caregiver for his wife, and I nod my head knowingly. We brought all the love and comfort that we knew how to give, even to the point of threatening our own health. We adjusted our finances and watched salaries and savings diminish, and yet that and more would have been an acceptable sacrifice if it had made a difference. Did it matter that we knew how futile these efforts would be? It didn't stop Jim from trying, and it didn't stop me from despair when The Disease gained new ground.

We talk about those who believe they have the right to judge us. Jim introduced two concepts that let me consider the place and importance of various people, and use that to weigh their influence. Jim labels these as status and eligibility. The woman who is now in my life has high status because she has a stake in making it work for us.

As for a friend of Jan's who might disagree with my treatment choices? She can feel as she does and tell me what she thinks, but her status in my life is significantly lower.

Jim brings in the second idea: eligibility, as a way to set status. Put simply—there are people who have the right, by experience or knowledge, to help guide us. “Someone who has walked in your shoes has eligibility,” he says. “Or an expert in Alzheimer's Disease is eligible because he or she has experience and specific knowledge that we don't. In a baseball game, there are players and fans and sportscasters who watch each play and can offer their opinions. But only the umpire has the right to call balls and strikes, safe or out, so he is the only one eligible to make those decisions.”

In a baseball game, it is pretty clear who is in charge. In our lives, in our situation, Jim and I must decide for ourselves who is eligible. It really isn't that difficult. It took time for me to hear what those with medical experience were telling me, and once I began to listen—Jim would say that was giving their advice and information high status because of their eligibility—I was surprised at how often they agreed among themselves on what was best for Jan and for me.

And then there were others trying to influence me and demanding high status by the force of their anger or the strength of their own opinions. For a while, I listened and reacted to them not because they were experts on either Alzheimer's, or caregiving, or even on Jan's life at that point, but because they were loud.

Jim faced much the same. “They are performing a degradation ceremony. They are kicking us out of the community of what they consider respectable people because we violated their standards. We must say back to them, you are not eligible to do this to us because you don't have the competence to make that call, you don't have relevant experiences.”

They are not the umpire unless, because of guilt, we allow them that role.

“Survivor guilt,” clarifies Teresa.

As I nod my head in agreement, Jim asks me a practical question. “Where does that guilt take you?”

I flounder to answer. It has driven a whole series of decisions about caring for Jan that are, in fact, more about my guilt for not being the sick one, for having the life that is blossoming and not the life that is shutting down.

I tell them how I hired a companion who would visit Jan three or four times a week in the care facility. The companion reports in her e-mails that their outings are cheerful and upbeat. In truth, Jan did not remember these outings a minute or an hour later. And is Jan “happy” in the moments with the companion? It is another question that no one can answer. What she says, when she can make sentences we understand, changes day to day. And the concept of “happy” is now beyond her words.

I ask Jim about e-mails I get from those who visit Jan, telling me she is “upbeat” or “today she was engaged.” This, despite the fact that Jan's language and memory are failing, and she shows other serious signs of ongoing deterioration.

Some people, explains Jim, will fill in the blanks from their own need to have the old Jan there. “A friend might say to her, ‘Jan, isn't it fun getting our hair cut?' and Jan nods her head and says ‘YES!' and it seems like she is engaged. They have not pressed their nose against the reality.”

“I can't really blame them,” I respond. “God knows I didn't want to press my nose against reality, either.”

It is funny that when I first met them, they sat stiffly and properly through afternoon coffee and then dinner and hours of conversation. Yet the next day, at breakfast, they trusted me enough to allow themselves to touch each other, or hold hands, or affectionately rub each other's arms in front of me.

We do not say this next part out loud because it does not need saying in our peculiar little universe. There is a line. On one side is the past. Those were the years spent fighting The Disease, and the endless dark nights when we slept next to the woman we cared for and loved. And in that darkness we choked back tears because the woman The Disease left behind wouldn't understand why we cry, and the crying would only scare her.