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Love is patient

Sunday, November 16, 2008
Love is patient
When I bought her the valentine, she smiled, but I knew the card was more for me than her. She didn't really know what it said. I read the message aloud, and she smiled again. I had to be satisfied with that.

My wife is one of America's 4 million Alzheimer's victims. She has had the disease more than nine years and, until a few months ago, I've been her inept caregiver. But you should know her first as a person, not merely a statistic.

We became engaged in 1943, while I was on leave, and Jean then waited almost two years for me to return from the Second World War. She wrote me every day, even when I was missing in action and she had no idea if I was alive or dead. My first message to her was a cable from the Liberty Ship carrying me home, after being wounded and a prisoner of war.

When we docked in Boston, I phoned her at the Omaha airport where she was working as one of United Airlines' first female passenger agents. They were experiencing a power failure and ticketing passengers by candlelight. Her colleagues melted away so that I could use this romantic situation to set a wedding date-just two weeks away. Somehow she made it work.

Still in uniform, I needed no tux, and Jean fashioned little organdy hats to accent her bridesmaids' former prom dresses. Her wedding gown was borrowed, and her airline friends pooled their sugar ration coupons so the United chef could create a proper wedding cake for the reception at her folks' house.

That was 57 years ago, years that involved several moves, a few different jobs, and 10 children. We tested our wedded bliss in a series of military posts-Texas, Arkansas, Washington-always worrying if we'd be able to locate affordable housing. After I returned to civilian life, we spent four years in a Massachusetts housing project while I worked on a graduate degree and earned $25 a week as an ad agency copywriter.

Our first child, Kathleen, was born deaf, a casualty of rubella. Because we had no car, Jean volunteered as a Red Cross driver, allowing her to take our daughter to a special school in Boston.

In 1950, we returned to Omaha and raised our children there. Besides Kathleen's deafness, three of our youngsters had severe asthma, and another had an eye tumor removed at the Mayo Clinic. Like many other postwar couples, we lived from paycheck to paycheck. Through these challenging years, Jean bore the major domestic responsibilities, always without complaint. People remarked on her serenity, her ability to calmly address each new problem. I learned to admire her instinctive wisdom.

One day a trio of neighborhood boys was teasing Kathleen about her handicap. I was ready to knock their heads together but Jean intervened, betting them that Kathleen could outrun them. They laughed at this challenge, but Kathleen, always a speedster, won the race.

Jean could make peace like that all the time, effortlessly. If I complained about some contemporaries who apparently had it easier than we did, she'd sagely comment, "They're not dead yet."

I could add evidence and anecdotes, but you get the idea. Jean was always counseling our children about their decisions, consoling and supporting them even when they opted erroneously. She also knew me better than I knew myself.

All of these qualities made it seem doubly unjust when she developed Alzheimer's.

I knew a little about the disease. My sister-in-law's husband had it and would often wander. She'd phone me and I'd jump in the car and track him to one of his familiar haunts. One of my closest friends in the Army became a Lutheran minister, a kind and sensitive church leader. Finally, however, his wife had to put him in a home because he became belligerent and combative, completely out of character. The wife of another friend suffered many years before dying. When I wrote him about my wife's Alzheimer's, soliciting advice, all he wrote back was, "God help you."

It is true that, "once you've met one Alzheimer's patient, you've met one Alzheimer's patient," so Jean's condition had its own unique character. And it came on very slowly.

I would tell her something and she would later insist I hadn't mentioned the matter. I'd think perhaps I did neglect to convey that information. I should have seen this as an early sign of dementia, but I put it down to aging on both our parts. When she couldn't find her way home one evening, that scared her-and me-so she stopped driving. Shortly thereafter she became disoriented in an airport, heading for the planes instead of back to where I was sitting, awaiting her return from the restroom. I knew then we had to get the professionals involved.

After several exams the doctor confirmed the Alzheimer's diagnosis. I never left her alone after that.

I suppose it would be easy to recite some of the more bizarre results of the disease, but that doesn't mirror the whole story. Let's just say that Alzheimer's affects every aspect of your relationship. Your lives merge more than ever. Your biographies become more unified. In scripture we read that to save your life, you must lose your life. In a twisted sense, this happens to both the patient and the caregiver. Sometimes I felt I was living my life in 15-minute spurts.

Of course, you have to be careful. Professionals warn you that you can do no good if you get down yourself. "I've lost more caregivers than Alzheimer's victims," one physician cautioned me. I can see how this happens. Although you love the person you're helping, you also realize that things will only get worse. It took me several years, a quadruple bypass, and a few strokes to come to terms with this.

Your faith sustains you, of course, but you have to work at that harder, too. I suppose a saint could offer it all up. And that's why there are so few saints.

How do you describe a day-to-day scenario? Some years ago I had lunch with the late actor Pat O'Brien, who gave me this memorable line: A priest friend of his had described hearing the Confessions of nuns as "being stoned to death with popcorn." Sometimes the caregiver's role is like that. No major tantrums or hallucinations but, rather, a series of small difficulties.

Like things being moved to unfamiliar locales. The sugar bowl travels to the freezer, bananas join the silverware, dirty clothes fraternize with the clean. The Alzheimer's patient might want to help with the cooking and mix peanut butter with the eggs and then burn that concoction. Or fill the steam iron with liquid starch. Or fold everything in sight, making 50 neat squares out of a toilet paper roll.

It amazed me how many different ways there are not to take three pills. Take one, leave two. Take two, leave one. Leave all three. Take three and spit them into a glass. It takes practice to get them swallowed.

I found I had to monitor her television viewing because she had a tough time distinguishing between screen images and reality. She might call me to help a man who had fallen in a TV drama. Or walk over, crying, and stroke the set when someone died. I reverted to programming comedies.

She began humming or singing, a fairly common practice for those with dementia. I've read that the last thing a person loses is music. Friends might say, "Well, it's better than screaming or crying." That argument is difficult to appreciate when you are exposed to something like tinnitus sans melody. Even listening to Pavarotti might pale after a few steady hours.

It's hard to define a day. There is some routine, some change, gradual loss, no real recovery. The day is dictated by the mood and needs of the person in your care. You realize you must answer all phone calls yourself, check the doors at night, make all the decisions. You find it hard to make the king-size bed alone. You miss the sharing of ideas and responsibilities. You may also resent never being able to relax, never allowing yourself to feel unwell, never being able to confidently interpret communication. And you're never certain that what you're doing is right.

Comments (3)

Bless you

I am 44 years old and cried when I read this. Not once but twice. I cried because of the love and I cried because of the loss. I worked for 14 years as an Assisted Living Supervisor when I was 20 until 34 years old. Sometimes I saw this, sometimes not. Your wife is a lucky person and deep down she knows. Its hard when they don't recogonize it any more, but you know that she knows you will always take care of her. I pray for you both. May God continue to bless you and keep you in his sight.

Robert, Reading your column

Robert,

Reading your column brought tears to my eyes. I know I shouldn't be tearing up because I know we should look to the future as you do when you and your wife will be together again in God's Glory. May God bless you and your family always.

hello

Bob,

This is a beautiful essay, and you are a wonderful guide through the nuances of love.

I thought I'd lost you when a letter years ago came back unopened. Please get back in touch. We are still in Lander, but traveling more - I am senior producer at Wyoming Public Television, with some books still to come. Write quite a bit at wyofile.com.

your friend, Geoff

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