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.
We have six children still in town and they have been a great help. But they have lives of their own, and I hesitate to impose too much. Groups like the Alzheimer's Association offer all sorts of help. But I suppose it is a curse of my generation that we try to solve things ourselves.
I acknowledge my lack of professional skills, but I did bring things to the table: I love this patient; I have a history with her; I understand her needs, know her likes and dislikes; I provide familiarity and security and a certain level of comfort. I know the house and environment. I knew I was a link to a past already damaged.
I read an article in Harper's by a woman who had responsibility for her mother, whose Alzheimer's was accelerating. She used the metaphor of someone on a failed Arctic exploration, concluding by saying she felt alone in her tent, the wind howling outside, and, having eaten the last of her sled dogs, she tries to sleep, uncertain if morning will come. It was the most grim piece I'd ever read on caregiving. I noted that she had no sort of faith to sustain her.
I believe you need one of three things to succeed as a caregiver: love, faith, or duty. It works best if you have all three.
There are many variations of love, but I'm not talking about the kind that flares up and burns brightly for a time. I mean the kind you can bank like a good fire against the certain cold and dark.
And duty. I was brought up respecting duty, which means you continue to do something even when the reasons have dissipated. Call it commitment.
And you can't make it without faith. You have to get your strength from somewhere, and you have to be convinced God knows what's going on. You must believe that someday and somewhere everything will be put right and your bruised relationship will be whole again. You have to trust that everything happens for a reason, even though you can't fathom it. I believe that God scrutinized me, concluded I wasn't a bad guy, merely a little driven, somewhat impatient. So he's teaching me that virtue.
The future of caregiving
From the Alzheimer's Association, AARP, and the Census Bureau come periodic reports on the current status of this disease and related caregiver roles. For example:
· An estimated 4 million Americans have Alzheimer's, including 10 percent of the over-65 population and 50 percent of the over-85 population.
· By the year 2030, 20 percent of the population will be 65 or older, and the fastest growing segment of this population will be those over 85.
· Fifty years from now, unless a cure is found, 14 million Americans will have Alzheimer's disease.
· More than two thirds of those with Alzheimer's are cared for in the home, primarily by family members and friends. Some 75 percent of these caregivers are female—more wives than husbands, more daughters than sons.
Proximity and relationship are the main reasons caregivers assume their roles, or because no one else will do it.
· Families pay most of the cost of care out of their own pockets.
When you match these statistics with the fact that today's families are smaller, children more mobile, and the prevalent culture argues against such sacrifice, you might predict a grim future.
But perhaps our salvation lies elsewhere. Some 35 percent of our population growth in the past decade came from immigrants to this country, and many of these newcomers believe you care for your aging parents, no matter what. As we have so often in the past, we may learn something from our "tired, our poor, our huddled masses," citizens who are yearning to be free—but not free of responsibility.—RTR
I pray, of course, but not for cures or miracles. I pray for my wife's continued health and serenity and for my own understanding. I pray that our children will also come to terms with the situation and not fret about this cross being visited on a wonderful mother or this disease tearing apart a couple still very much in love. I want them to know that God doesn't wish suffering on anyone.
David Karp, a sociologist and author of The Burden of Sympathy (Oxford University Press), gives this advice: "The people who are most successful in this caregiving situation are those who have truly internalized the mantra of the caregiving group I've been observing, something they call the Four C's—'I didn't cause it; I can't cure it; I can't control it; I can only cope with it.' "
I'd add that you can also pray about it. And I try to remember how life must be for the person with Alzheimer's. It's facile to say they really don't know what's going on, but many of them do.
A friend was visiting us, and my wife, seated next to me, was babbling nonsense phrases, making no sense. The friend then mentioned she had two children and my wife asked, out of the blue, "How old are they?"
After constant urgings by my doctor, friends and family, and a few months' trial with limited daycare, I finally agreed to some sort of permanent professional care. I'm sure I should have surrendered to this earlier, not for my sake, but for hers. She now lives all on one floor, not on six levels like our house. There are grab bars in strategic places, no rugs to trip on, all potentially dangerous things locked away. Professional caregivers are on duty around the clock, and both a nurse and a therapist come in daily. Jean adjusted quickly. I'm still working it out. Despite the warmth of the caregivers, I still feel a bit like a guest.
Most days, Jean just sits there beside me, rests her head on my shoulder, and dozes. Sometimes there is arrested communication. I show her photos, sing to her, talk softly. On Sundays I bring her Communion but, more and more, she seems unaware of what she is doing. I feel caught between sacrament and sacrilege.
One day the nurse said, "I tear up every time I see how excited she is to see you."
"Listen," I told her, "for 60 years that's the way I felt when she walked into a room." The nurse cried at that.
So I stumble along, learning, at age 80, to fashion a new life. Jean is doing the same. I suppose someday the other residents will be more real than any past we shared. When that time comes, I hope I'm ready.
To pull myself out of a lonely funk, I tell myself how hard it was to be the sole caregiver, but I can't honestly remember those burdens. It's like the scripture passage where the woman forgets the pain of childbirth in the joy that a child is born.
I build my days around visits to her, not as corporal works of mercy but as one of the joys of marriage. I love who she was, but I also love who she is.
And I have evidence that God isn't absent. Take the subject of money, for example. Alzheimer's care is expensive, and normally, I couldn't afford it. However, some 35 years ago my wife talked me into buying a cabin in Colorado, reminding me that the place was worth far more than the asking price. The family enjoyed that cabin for 20 summers and Jean loved it most of all. We sold the place for far more than we'd paid, and those dollars are now paying for her care. Some might call it coincidence or serendipity, but I prefer to believe that God had his own long-term care plan.
The caregiver years were hard. But I'm glad I had the chance to do something for my wife, who had done so much for me. Those years also revealed me in a new favorable light to my children. And I learned a great deal.
I should purge the walls of portraits,
Even on the most difficult days, there were rewards. One day I had taken Jean and a sister-in-law to a restaurant. I left them for a minute to chat with friends at another table. While I was absent my wife said to my sister-in-law, pointing at me, "That's the man who takes care of me."
That night, as a test, I asked Jean, "Who am I?" She didn't seem to understand my question. So I asked again, "What's my name?" She thought for a few seconds and replied, "You're my darling."
When I was weighing the option of fulltime care, the woman in charge of the home told me, "You won't feel good about the decision when you make it. And you won't feel good about it a year later." She's partially right. Intellectually, I know I acted responsibly; emotionally, I'm working on it. I told my pastor last February that this would be the best Lent I ever made because I'd given up the thing that meant most to me in the world.
I have a certain conviction that we will be together again and as we used to be. I have had dreams about that final reunion. I've seen it in my mind a hundred times. We're both dressed in white and we're dancing in front of patio doors open to a sea.
Many writers have dubbed Alzheimer's as "the long good-bye." But I think there is no good-bye, only what I say to Jean at the end of each visit, "I'll see you tomorrow."
I think of the words of Edmond Rostand's Cyrano de Bergerac: "I am never away from you. Even now I shall not leave you. In another world, I shall be still the one who loves you, loves you beyond measure."
Meanwhile family, friends, and caring professionals sustain me. On occasion, I am reminded, in nonmiraculous fashion, that my pain is not unnoticed by God.
It was our wedding anniversary. Number 57. I brought roses to the home and a tape of Beethoven piano concerti. When the professional staff said she sometimes had trouble getting to sleep, I suggested classical music. We often listened to symphonic works together. It worked, my one contribution to the treatment regimen.
Along with the flowers and the tape, I gave her a card, one with a Hebrew motif that translated, "You will never be out of my heart." I spoke with her about the anniversary and how much these years had meant to me, hoping she would recognize the significance of the date. Her expression said nothing and she didn't reply. Not even a smile of acknowledgment. I returned home a little sad, wishing that God had given her just a fleeting glimpse of what occurred. No chance.
That night Mickie, one of the caregivers, phoned me.
"Bob," she said, "she knows it's your anniversary. She was looking at the flowers and the cards and she said, 'I forgot our anniversary. Is he still here?' I told her you'd be back tomorrow. Then I read her your card and she cried. I cried, too."
I know how she felt. But there is a difference between tears and tears of joy.
Robert T. Reilly is a freelance writer who lives in Omaha, Nebraska.All active news articles