Challenges of Providing Care for Spouse or Parents – AARP

Tending to his dying wife, he did what guys do: He hunkered down and tried to fix it

BY Bill Newcott
AARP The Magazine

It’s the one vow that can really come back and bite you in the butt: “… in sickness and in health.” On your wedding day the phrase conjures up visions of tiptoeing into a sun-drenched bedroom with lunch on a tray; of dropping cough medicine onto a tablespoon and gently bringing it to your spouse’s smiling lips.

What you don’t expect it to mean is crouching in the harsh fluorescent glare of a hospital treatment room and holding her head to yours, trying not to faint as a technician inserts a large needle between her ribs to suction two liters of fluid from around her lungs. What you never imagine is spending endless hours in countless waiting rooms, or having friends and relatives second-guess your medical decisions, or hearing your bosses and coworkers hint, suggest or just flat-out say that you’re not carrying your weight around the office.

No, you don’t expect “in sickness and in health” to mean any of that. But it does. And more people are learning that every day.

Across America, 43.5 million people — nearly one in five adults — are caring for a loved one 50 or older. Most are tending to parents, but the older we get, the more likely we are to be caring for a spouse.

One hot August afternoon in 2006, I joined that group.

Cindy, we discovered, had clear-cell ovarian cancer. Chemotherapy worked for a while, but less than six months later, the cancer was back, and one Friday evening, after office hours (trust me, you never want your oncologist to ask you to come in after everyone else has gone home on a Friday), we heard the verdict: There was no “cure scenario.” Cindy was 52.

This is where we cut to a montage of the three years that followed: how I sat by Cindy’s side through virtually all of her chemotherapies; how I kept track of the dozen or so drugs she was taking each day, especially her painkillers, to make sure she didn’t overdose; how I had to wake up and rub her spine several times each night after her back pain became torturous; how I took the subway home for lunch every day after she became too weak to get down to the kitchen; how I prayed with her, encouraged her and held her.

On the other hand, well, who cares? I find such litanies of caregiving duties and rituals at best distasteful; at worst, self-congratulatory. Certainly, when I was in the midst of it all, the last thing I wanted was to sit down and share the intimacies of my life with anyone. Living it all was exhausting enough.

If I were a woman, it might have been different. Studies show that female caregivers are more likely to share their emotional burdens with friends, family or organized support groups. But guys tend to try to fix things on their own. We knit our brows, hunker down and go about the business of caregiving with the solitary determination of Thomas Edison toiling over his first lightbulb. Of course, there are exceptions — women who keep their own counsel, men who reach out. But to me, that whole support-group thing seemed like living in one big episode of The View. The life I was living was more like 24, with me as Jack Bauer, alone against the world.

And as the months wore on and Cindy went through the deceptive ups and devastating downs of cancer and its inescapably inhumane treatments, I grew even less willing to discuss the ordeal with anyone else, even my family. We were already spending hours a week consulting specialists. For me the only escape from the maelstrom lay in not talking about it. In truth, my longest conversations about what was happening to Cindy were private ones between me and God. And for all the comfort and encouragement those chats gave me, the Lord was understandably silent regarding such matters as whether Avastin should be the drug of choice for a patient with stage IV ovarian cancer.
Naturally, we didn’t go through Cindy’s illness in a vacuum. Close friends and dear relatives, including our four grown kids, appeared, almost magically, when we needed them most. And every other Tuesday I went to a men’s prayer breakfast at our church, a practice I’d followed for years before Cindy got sick. A simple “Pray for Cindy” was just about all I’d allow myself, but I knew that those guys cared, and that was something.

Still, there are things I wish I’d had the strength to tell someone. No one knew about the night a semidelirious Cindy, mistaking a disagreement for some kind of threat, called 911 to have me thrown out of our house (a belated thanks to the two kind cops who came and talked her down). Nor was anyone aware of how Cindy, in an irrational panic about being abandoned, begged me to sign over our home and savings to her in a new deed. “Don’t worry,” she said, “if you’re still here when I die, you’ll get everything back anyway.” On paper it was insane for me to comply, but I did. I’d have done anything to ease her mind, which was increasingly tormented by cancer and the drugs.

To the world — and in reality — Cindy was a sweet, devout, courageous woman: a loving wife and mother enduring unimaginable pain and loss at a tragically young age. For me to talk about those dark, untethered moments, I feared, might have diminished her in other people’s eyes, and I couldn’t bear the thought of that.

Like the worst days, the best days of those last years were provided by Cindy herself. Barely four months before the end, nearly doubled over from constant pain, Cindy traveled from Washington, D.C., to California, where she was the radiant mother of the groom at our youngest son’s wedding. Not five minutes after Cindy’s oncologist relayed, over the phone, the news that he was discontinuing chemotherapy for good, she rolled out of bed and said, “Well, life goes on; let’s go make dinner.” And on her 56th birthday (less than two weeks before she died) our family was sitting around the dinner table when I realized Cindy was out in the kitchen, icing her own cake.

That was the Cindy I’d fallen in love with my sophomore year in high school: devoted and talented and practical to a fault. And it was the one we all saw, in flashes, right up until the end. So no one could ever understand the wave of betrayal I felt when I learned that, two days before she died, Cindy had signed a new will that gave me less than 20 percent of everything we had scraped together, splitting the rest among our children and grandchildren. Facing the end, she wanted to leave them all a legacy. I didn’t contest it. I love those kids, and no money was worth prolonging the ordeal we had all gone through.

So why, you ask, should I relay now what I couldn’t say even in private while Cindy was alive?

Well, I’ve been thinking, and it seems to me that there must be others out there keeping the same kinds of secrets. Like me, they’re not about to pour their hearts out to strangers in a church basement. But I want them to know that, even in their isolation, they are not alone.

The viewing before the funeral was in our home. When it was over, I kissed Cindy good-bye, closed the casket lid and headed wordlessly upstairs. From our bedroom window I watched the young men carry the coffin outside, heard the heavy thunk of the hearse door and listened as the car rolled away, the tires crunching over leaves that had fallen in a freak July windstorm that morning. I thought of Cindy lying on her back forever, and for a moment I worried about how I’d ever be able to rub it for her now. I buried my face in a pillow. And for the first time I could remember, I cried.

As the darkness gathered, I lay there and tried to recall my last good time with Cindy. I didn’t have to go far back. During her last night, alone with her in our bedroom, I whispered in her ear, “I love you, Cindy.” Her head moved, almost imperceptibly. “I love you,” she half whispered, half moaned. In her final conscious act, Cindy had left me with exactly what I needed. In a way, she fixed everything.

Bill Newcott is entertainment and travel editor of AARP The Magazine and host of the Movies for Grownups(R) radio show.

Shoulders to Lean On

If you’re taking care of an ailing loved one, there’s help out there. Don’t go it alone.

A year ago Algerine Correia was at a breaking point. Both of her parents had moved into her Pacific Palisades, Calif., home, and both needed around-the-clock care — her father, Manuel, for dementia and her mother, Anita, for a variety of physical problems. Correia, an active, divorced 65-year-old, says she started sinking emotionally. “As hard as you try to make things better, they’re slipping downward,” she recalls.

Then she discovered WISE & Healthy Aging, a Santa Monica-based nonprofit that offers support groups for caregivers. Correia joined a close-knit group that meets twice a month to share stories and caregiving tips. The agency provides free adult day care for group members’ loved ones during the 90-minute meetings. “When you hear from other people,” Correia says, “you don’t feel so alone.” Anita recently died at 89, but Correia still cares for Manuel, 93.

Agencies like WISE & Healthy Aging exist across the country, offering not just support groups but one-on-one counseling. Caregivers frequently suffer exhaustion, depression and anxiety, explains Steven Zarit, Ph.D., a professor of human development at Penn State University who has studied caregiving issues for 35 years. Talking about your situation with a counselor can relieve a tremendous amount of stress, he adds. Zarit is also a proponent of adult day care programs, which provide caregivers with a “predictable break from their responsibilities.” Another benefit: Patients tend to have fewer behavioral and sleep problems after coming home from day care than on days they spend at home.

Even if a caregiver is blessed with sympathetic family and friends, a support group can be a safe, guilt-free place to vent frustrations, says Frankie Aggers, a social worker who facilitates Correia’s group. Also, says Aggers, a group can help caregivers let go of the shame and self-blame that are a natural part of the job. “The group allows them to hear that what they’re doing is the very best they can and to feel OK,” she says. “They just need to feel that.”

~ by Butch on October 31, 2012.

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