"A year ago my father, who's 66, was diagnosed with Pick's disease, a form of Alzheimer's," said Claire, 46, a former TV producer who has been married to Tom for 19 years. Their daughter, Kelsey, is 17. "Tom and I decided to care for Dad at home. But our family life has disintegrated. We're both angry and overwhelmed. All we ever talk about is Dad. We never see friends or go to the theater — stuff we used to love — because someone has to be with Dad every minute. And the situation has brought out the worst in both of us. We've been having terrible arguments. Tom tends to hold on to complaints until he explodes. Then he withdraws and doesn't speak for days."
"I appreciate everything Tom has done for Dad. But — how can I say this? — I feel neglected. Tom takes care of Dad but forgets my birthday. I can't remember the last time we had a heart-to-heart talk. Lately I've been snapping at him, saying hurtful things.
"Until last year, my father lived in Boston near his stepson, John, who we thought was taking care of him. (My stepmother died four years ago.) But one night John called in a panic to say that Dad had been arrested for stealing a belt from a department store. Apparently he's been acting strange for nearly a year, filching Hershey's bars and key chains from the local candy store. Since the owner had known Dad for years, John was able to smooth over those incidents. This time, though, he'd been arrested and jailed. John begged us to help.
"The next day Tom and I drove from our home outside New York City to Boston. I was horrified to discover that my father had been living in squalor, with a tribe of street people he'd invited to camp out in his once-beautiful home. I hadn't seen him recently — not unusual in our family — but we'd speak every two weeks. He'd call at 6 a.m. and seem perfectly fine. We've always been early-morning people, so I didn't connect the dots.
"The man I knew was elegant and charismatic, a brilliant educator who either worked with or knew some of the most prominent public figures of our time. And now he couldn't scramble an egg. I couldn't believe John had let the situation deteriorate to such a state. We had a huge fight, Tom and I spent countless hours straightening out my dad's finances — we no longer speak to John.
"After Tom and I got Dad out of jail, we took him to the doctor. Tests showed that he had this accelerated, early-onset form of Alzheimer's that tends to make sufferers more volatile. And no one could tell us whether we were facing two years or 20. What they did tell us was that Dad couldn't live alone. So we brought him home and moved him into our extra bedroom. It was the only way for us. Tom has clients in the healthcare industry and he insists that even the best nursing homes are horrible.
"Dad's behavior is so erratic that he needs constant care. But he won't tolerate outside caregivers; we've run through several. We tried adult daycare but were asked not to bring him back because he harassed other clients. So I had to quit a job I love to stay home with him. I told myself it was just a temporary detour, that I would resume my career as soon as the situation was under control. But who knows when, or if, that will happen?
"Dad gets up at 4 a.m., marches into our bedroom and insists we take him for a car ride. We return, I give him breakfast, and then he wants to go out again. He knows who we are but not what he is saying or doing. One day at a store, he opened a can of motor oil and started drinking it. We had to drag him screaming from the place. If I ask him to stay inside on a cold day, he'll call me vile names, push me aside, and go out with no coat. Last week he shoved me so hard that I bruised my legs — a fact I didn't disclose to Tom.
"Kelsey has been wonderful, and in some ways her helping me with Dad has brought us closer. But she'll be off to college soon — I resent the time I've missed with my daughter because of my own filial obligations. Yet I feel guilty saying that, too!
"Before Dad got sick, Tom and I had a wonderful marriage. We met when we both worked for a daytime talk show in New York. I moved to the city from Baltimore when I was 18 for college; after graduation, I got a job at a TV station. The hours were long and the pressure intense, but I loved every minute. Tom was executive producer of a pilot the station was trying to sell. I had no intention of getting romantically involved with a colleague, but he was persistent. Finally I agreed to dinner.
"That was all it took; I fell madly in love with Tom's passion, intelligence, and spirituality. We were married within six months. For a long time, life was good. But now the situation with my dad is tearing us apart."
"Last week Claire barked at me in a voice I've heard far too often in the past year," said Tom, 48, a public-relations executive with his own company. "I realize she's tense, so most of the time I let it pass. But this time she accused me of loving her father more than her. That hurt."
"I fell in love with Claire the first time I laid eyes on her — and that love has never wavered. Until this crisis, we could be together 24 hours a day, seven days a week. Now the air crackles with tension. The fact that she could question my feelings shows how far things have sunk. I've always told her that I consider her father my father, too, and that I'll do anything to ensure his comfort. But does she really believe I like having my father-in-law underfoot? That I like driving him around for hours to calm him down?
"I'm also shocked to hear that he's been abusive. Why didn't she tell me? Now I'm more reluctant than ever to leave her alone with him. But I don't know what to do. We hated having a caregiver live with us. Anyway, four have already quit on us. He was also kicked out of adult daycare. That leaves long-term care as our only option. But we hate to go that route. I know a lot about nursing homes, none of it good.
"There seems to be no way to stop her father from consuming our lives. The stress is unbelievable. We never have quiet time in the evenings. We're never alone. I'm a gourmet cook, but I can't remember the last time I made a nice dinner. Everything that once brought us joy has fallen by the wayside. The only bright spot is the way Kelsey has met the challenge. She even told us, 'I'm glad I finally got the chance to know Granddad.' (Luckily, he's lucid every once in a while.)
"I realize my temper makes matters worse. I just don't know how to calm myself down. I'm also worried about money for the first time. Claire had to quit working, and I've lost several accounts because of all my time off. We've run through my father-in-law's money and much of our savings, too. A nursing home would eat up everything. What's more, the doctors tell us he could live for a few months, a year — or 10 years. We don't know when we'll get back to normal.
"I'm determined to make sure my father-in-law is comfortable for whatever time he has left on this earth. But I'm racked with doubt. Are we doing the right thing? Every day I worry that I'm failing."
The Counselor's Turn
"Few people are prepared for the legal, financial, and emotional challenges involved in caring for an elderly parent," said the counselor. "Disappointment and unrealized expectations can chip away at even the strongest marriage. Claire and Tom were no exception.
"I reminded them that there is no right or wrong way to care for an aging parent. 'Every situation is different. But it's imperative that you check in with each other regularly and communicate your thoughts,' I said.
"I urged them to have a regular, weekly talk to handle small problems before they snowballed, which they now do every Sunday night. Tom promised to let Claire know when her tone is harsh, or if he is worried about business. To catch his frustration before it turns to anger, I taught him to tune in to his body's signals. He noticed that he clenches his jaw when he gets upset; by consciously taking a mental step away — by taking deep breaths or counting to 10 — he can cool down instead of explode.
"They've also begun to pay attention to small things that can lighten the mood and keep them connected. Listening to music, taking 10 minutes to snuggle on the couch, even using their best dishes when they eat takeout pizza help Claire feel less neglected.
"Being specific about their needs enabled them to create a schedule that gave each of them short respites. For example, Claire loves going to thrift shops and flea markets, and she missed having time to sing with her church choir. Tom hoped to carve out two hours twice a week to go to the gym. By creating a schedule early in the week, they could look forward to these 'time-outs.' That made the daily grind easier to bear.
"A few months after starting therapy, Claire and Tom made an important decision. With their daughter away at college, they checked with their financial planner and decided it made sense to sell their home and move to Georgia, where Claire has family and housing costs are much lower. (This allowed them to buy a larger house with the windfall they got from selling the other one.
"'I have my cousins' support here, and if Dad wanders into the backyard, at least the weather is warm,' Claire said. Although it took awhile, Tom figured out ways to run his company via computer, fax, and cell phone, flying to New York as needed.
"'It's only a short flight,' he e-mailed me, 'and life here is so much calmer. Our fights are ancient history.' Although Claire was in favor of moving, she worried about how she'd adapt. 'I think of myself as a big-city girl,' she said. 'But I'm happy! I feel much less tense.' She enrolled in a weekly creative writing class — 'it makes my brain feel alive' — and has become involved in the music program at their church.
"For now, the couple plan to stay in Georgia and take life a day at a time. 'You have to find joy in what you have,' Claire told me. 'In my case, that's a wonderful husband, a terrific daughter, a strong faith...and two new black Labrador puppies!'"
"Recently Tom called with the sad news that Claire's father had passed away. He'd suffered several small strokes and spent a week in the hospital before dying there. Claire is now wrestling with her grief. 'I know we did our best for Dad, but I wonder if we could have done more.' I reassured her that such self-doubt is normal and would ease in time.
"Adjusting to their difficult situation was a challenge for this couple. And it never stopped being difficult. But they managed by working hard and learning to be patient.
"Can This Marriage Be Saved?" is the most popular, most enduring women's magazine feature in the world. This month's case is based on interviews with clients and information from the files of Robin Newman, LCSW, a family psychotherapist in Huntington, New York. The story told here is true, although names and other details have been changed to conceal identities. "Can This Marriage Be Saved?" is a registered trademark of Meredith Corporation.
Originally published in Ladies' Home Journal, November 2004.