He's Here, But He's Gone

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HE’S HERE, BUT HE’S GONE

Shirley Ross Loeb

 

His body is here, his face is here, but he is gone. My husband of 35 years, the one I knew how to make laugh and make angry and make love to, is gone. His lithe body, handsome face, winning smile, the cleft in his chin, that full head of gorgeous white hair is still here. There are occasional flashes, moments of nostalgia (remember when we first saw the sunrise over Maui) and remembering (that hippie shirt with the fringe that I wore with a tuxedo to a firm dinner) that turn into glimmers of hope. I’m encouraged. We can still connect, I can handle this. It isn’t so bad. A few minutes later he doesn’t remember that we even had a conversation and sheepishly grins, "Refresh my memory." I shatter. I scramble through my disappointment urging myself to seize the few lovely moments in a deteriorating situation. My belief was that marriages ended in one of two ways, divorce or death, and mine was going to be death. I learned there was a third way.

The diagnosis of Alzheimer’s caught us unaware. Ronny, the golden boy, Phi Beta Kappa, Harvard Law Review, was retired at the mandatory age of 65 after 38 years as a corporate lawyer in a prestigious law firm. Before the idea of retirement set in, a former client offered him a position establishing an in house legal department. We moved from our home in Santa Monica to San Francisco, an eternal city of hills and beauty, where we had always dreamed of living. Our four years in San Francisco was an extended honeymoon, just the two of us with no responsibilities after having raised our children and his children from a prior marriage. We worked every day, walked to dinner every night to different restaurants in that great foodie town, went to sleep lulled by the arcing light of Alcatraz, the mournful foghorn, and the families of sea lions barking on Pier 39.

When Ronny hired his successor, we returned to Los Angeles. He was antsy, scrambling to get into something else. He was used to being the first one in the office in the morning and the last one to leave at night. He loved working, being "in the game" as he called it. There were a few potential affiliations that never took root. He plaintively warned his friends, "Don’t stop working." As a therapist, I was aware that the initial time after retirement is crucial for a man who has been identified with his profession. He slid into apathy and my teasing him about blowing it by not taking up golf didn’t even get a grin.

I, on the other hand, was delighted anticipating the future. We had time, enough money, and had learned to travel light. A year before we had taken a four week trip with only carryon luggage. What freedom - a passport, a few credit cards, two books, some jeans, t-shirts, an all-purpose jacket. "Let’s do this three times a year," I suggested. In a good marriage like ours, the mood of one affects the mood of the other so I was determined to not sink into sadness with him and set about to make it good again.

It seemed like a positive omen when a business friend invited him to chair a program in Madrid so it was to be Madrid first (great because the museums had reopened after renovations), followed by a tour of Sicily with some friends and finishing up with a few days in Paris. A week before we were to leave Ronny was anxious about going, afraid he’d run out of supplies for his diabetes. This rang false because he had been fearless in his travels, trekking in Patagonia, wandering through India and China. "What about your commitment to the program?" He shrugged, "I’ll have to beg off." This was surprising news. When it came to work whether we had one of those all night marital fights, or indigestion from too much of the good life, or just sleeplessness, in the morning he would put on a shirt and head to the office. It became clear that we were in a new universe.

"Ok, but we have to see someone about this, and right away."

The MRI showed the plaques and tangles of Alzheimer’s. Ron shook his head, "What an irony! I who used to boast that my brain was my best asset."

The first loss is short term memory, phrases repeated again and again, the same questions asked over and over, the answers not either heard or understood. "So what time will you be back?" "Five o’clock." "So what time will you be back?" "Five o’clock." The books on Alzheimer’s advise caretakers to answer the questions repeatedly and not say, I’ve already told you, or don’t worry about it. It sounds like good advice but it wears on the nerves.

I went into denial. This isn’t real. "Come on honey," I’d appeal to him, "We’ve gotten through lots of stuff. We can get through this. It isn’t so bad. What’s so important to remember anyway? Do you remember me?" That sometimes brought a rueful grin, "You’re the last thing I’ll forget."

Then he couldn’t follow through on simple things. I would call and say, "We have to leave for the theatre at 5:30 pm. Get ready so we can leave as soon as I get home." When I got home, he’d be sitting around. "Don’t you remember I called? How come you’re not ready?" "When did you call?" he would ask. I got resentful, things had changed and they would never be better. I felt guilty. I was demanding things from him he could no longer and I was angry at him and at myself.

When there is a diagnosis of Alzheimer’s, the doctor is required to inform the Department of Motor Vehicles who tests to see if the driver is still capable of driving. Our family did not want him to drive any longer. We now needed a caretaker.

We were urged to join an Alzheimer’s support group. Spouses come together. There is some information given then the groups divide into the afflicted spouse and the caretaker spouse. The political correctness was thick. Any feeling other than sympathy and concern for the afflicted partner did not come up.

When I prodded the group with what about us, our lives have changed, our futures are diminished, what are we going to do about ourselves, there was no public response. On the way out a man cornered me with, "I’ve thought about what you said and it scares me." A woman whispered to me in the rest room that she wished her husband would just go away.

I enrolled Ronny in a memory training class, but he had no interest in doing the exercises. He’d say, "I’m demotivated." I’d say "Get motivated. Do you think I should be working harder on this than you do?" He wondered why I was getting so upset. If I pushed him, he became petulant. When he was petulant, I was locked in on both sides. I could only be nice and what could I do with our shattered hopes and dreams for these the golden years.

A lot of the richness in our relationship had been sharing our daily experiences. He no longer had an interest in what I was doing. I found myself strung out, upset and crying. My blood pressure was high, my cholesterol was up. The stress was showing. It wasn’t comforting to hear from the doctor that studies have found that often the patient survives the caretaker. A deep loneliness set in. I no longer had my best friend, the person I would always turn to was gone.

Everyone advises you to take care of yourself and after a while of wringing my hands and complaining, I followed that advice. I knew about the mindfulness program of yoga, deep breathing, meditation, walks, nutritious food. I lost the twenty pounds I had put on when my last child, who is now 25, was born. Being a couple had anchored me. Now where was I to go for connection. Then from the tunnel came a light. My friendships with women were to become my new anchor. I joined one book club, then two, then three, then four. I joined one woman’s group, then two. I had to open my life up in another way. I had to stop this cataclysmic downward spiral (one of Ronny’s favorite expressions.)

Alzheimer’s is not a rah rah disease like cancer and heart disease which you can beat with surgery or the right treatment. There is no hope for getting better. My image for Alzheimer’s is of a massive statue, like Rodin’s Victor Hugo with parts falling off at intervals. It may still stand but it is not whole. This disease is becoming endemic now that lifespans are longer. We know about Sandra Day O’Connor leaving the Supreme Court early to take care of her husband who then had Alzheimer’s for fifteen years. He was placed in an institution when she could no longer care for him. Now a year later he doesn’t remember her and is like a teenager in love with a woman he met at the facility. No one denies him that love but what about her. The film "Away from Her" portrays the impotence of a loving husband who loses his wife to the disease. I realized it doesn’t do anybody any good for me to go down with him.

The challenge became and still is how to find a balance, how to maintain Ronny’s dignity, create a life for him, keep our family unified and supportive. We have round the clock caretakers who engage him in classes, activities, and exercise. We discovered a hidden talent for sculpting which he enjoys immensely and calls on a different intelligence than his lawyering skills.

Where am I now? I am a married woman without a mate. I look at Ronny, I still love him and know he is moving further and further away from reality. To paraphrase Robert Frost, "Two roads diverged in a single wood…" I took one. He took the other. Yet I have grown and my life has opened up in ways that surprise me. I have an office which doubles as an apartment, a room of my own, where I spend a few nights a week. I’m getting ready to take a trip to Europe with a group. I’m saying yes to everything now. And I don’t know how or when but I am still hoping for the love of a man.

Acceptance is something to talk oneself into every day. When our kids would complain about something that wasn’t going their way, Ronny and I used to say, "You may like. It. You may not like it. But it’s a fact." Now I repeat that to myself.