Ride For Life: Caregivers could use help of their own

More than four years ago, my wife, Renee, was diagnosed with advanced cancer and given only a few months to live. Remarkably, she's still here, still plugging.

She's also still desperately ill, a hospice patient, confined to a recliner in our den, unable to tend to many of her routine physical needs. I'm her primary caregiver.

If nothing else, our experience has focused my attention on the vast number of people who, like me, spend much of their time and all of their energy caring for disabled loved ones.

Before, I'd never much noticed caregivers. Today, I see them everywhere: wives nursing husbands through the horrors of Lou Gehrig's disease, mothers caring for quadriplegic teenagers, adult children looking after parents who suffer from Alzheimer's.

I've discovered that when a person is afflicted with a long-term illness, the one closest to him suffers as much as the patient does (and in some cases more, experts say).

Yet, caregivers often are ignored, and occasionally misunderstood, by church workers, family, friends and sometimes even by medical professionals.

For a slew of reasons, caregiving might be the world's hardest job.

It's hard not because you don't love the patient you're taking care of. It's hard because you do. Watching a spouse or child suffer month after month, year after year, takes a profound toll.

It's common for ill people to become angry and vindictive as they battle their illnesses. It's also common for them to turn those searing emotions against the one nearest them: the family member trying hardest to help. It's difficult enough to nurse a disabled person; it's 20 times harder when that person blames you for his pain.

Here are a few of the numerous other pressures that caregivers routinely face:

• Financial problems. Perhaps the sick person was the family's primary breadwinner but can no longer work. Sometimes it's difficult for the caregiver to hold down a job while tending a disabled spouse. Then there are all those medical bills.• Role changes. A man whose wife is on a ventilator might have to become mother as well as father to their children. Adults caring for elderly parents can find themselves forced to act as parent to their moms or dads.

• Confinement. Caregivers are trapped at home for days or weeks at a stretch. They'd love to take a vacation, go to the movies or simply drive to the grocery. They feel as if they're under house arrest.

• Loss of physical affection. An ill spouse might be too sick to have sex -- or even to rub his wife's neck. Yet the care-giver still needs a normal physical relationship. (Some wag said sex is like air: It's not that important until you're not getting any.)• Loneliness. The caregiver often feels robbed of work, friends, church. He or she might not be able to talk freely to the sick person, for any number of reasons.

• Loss of faith. Many caregivers struggle to maintain their previous trust in a loving God, as they witness a level of suffering they're never encountered before.

• Guilt. Frequently they feel guilty because they can't do more to help their loved ones, or because they are themselves healthy, or because on bad days they'd rather see their love ones die than live in their present conditions.

• Dread. A caregiver worries about what he or she will do if the sick person does die. They wonder who will take care of them if they become ill, too.

• Total burnout. See all of the above.

Despite all that, caregivers typically suffer in silence. They don't feel free to express their own pain, when someone they love is suffering so much more visibly. They're afraid their friends will think they're selfish. Consequently they turn their agony inward.

A mental-health counselor told me that, over time, a disproportionate number of caregivers find themselves drawn to self-destructive behaviors. They abuse alcohol; they have extramarital affairs; they desert their ill loved ones and disappear; or they develop serious health problems of their own, such as depression, hypertension or heart trouble.

There's quite a bit you can do to help them.

First, never, ever, judge. You might think you know how you'd react if your husband, mom or child were ill -- but trust me, you don't. Not until you've been there.

Second, give the caregiver a safe -- by which I mean both a non-judgmental and confidential -- place to vent. Just listen. And listen.

Third, volunteer to sit with the sick person for a day so the caregiver can get out. Better, hire someone else to sit with the sick person and take the caregiver out yourself.

Fourth, insist that the caregiver nurture his or her own health.

Fifth, pray for all concerned.