Like most people caring for an aging parent, Judith W. has issues. And they're big ones. She's been taking care of her 94-year-old father for the past 13 years and has seen her worries and responsibilities grow as his health declines. "I feel frustrated a lot of the time," she says. "I'm also resentful of the demands that my dad makes on me, but then I think I must be selfish so then I feel guilty. And I'm sad when I see how much he has declined."
This tangled mass of emotions often leaves her feeling overwhelmed. "Even when I'm not with him, my dad sits on my shoulder," she says. "He's right there in the middle of my head all the time."
But Judith is not alone. Experts tell us that most caregivers will face all of these feelings at some point. But the good news is that there are ways to manage them. Here are some steps to take:
Getting Past Denial
Accepting a loved one's illness or disability can be a difficult step for many people, says Valerie Schultz, a counselor at the Los Angeles Caregiver Resource Center. In many cases, family members will go on hoping that the situation is not as bad as it seems—that a cancer isn't really advancing or that dementia is being caused by a virus or a medication mix-up instead of Alzheimer's.
Denial is a natural reaction to a crisis like this, says Linda Fodrini-Johnson, LMFT, a licensed therapist and board member of the National Association of Professional Geriatric Care Managers. "You're looking at a long-term situation that will most likely get worse over time," she says. "Who would want that?" But while denying the truth might insulate you for a while, it's important to get beyond it as soon as you can—for your own sake as well as the loved one's—and get an early, reliable diagnosis. In many cases, those who are diagnosed in the early stages of disease will be able to participate in legal and planning processes. Many also can benefit from drugs that would have less effect if taken after the disease had progressed.
Putting Yourself First
Most caregivers are better at caring for others than themselves, says Tammy Pozerycki, MS, LSW, a social worker and director of admissions at Eliot Healthcare Center in Natick, Massachusetts. When your priority is the person you're caring for instead of yourself, it's only natural that you let some things slide. But problems arise when you start skipping your own doctor appointments and abandoning healthy eating, sleeping and exercise habits. This is especially problematic for live-in caregivers, she says. "For these folks, caregiving has gone way beyond a full-time job: It's 24/7."
"It sounds harsh, but I tell people this: If you don't take care of yourself, you're going to die," says Schultz. "We know that a big percentage of caregivers over the age of 55 will die before the person they're caring for—and not because of some pre-existing condition. It's because they stop taking care of themselves."
This is good advice for caregivers of any age, adds June Lundy, a counselor at East Valley Regional Cancer Center in Chandler, Arizona. "It's just like they tell you on the airplane: You have to put the oxygen on yourself first before you help someone else."
Beyond basic healthcare, however, are the many other aspects of your life that can easily be ignored when you take on the role of caregiver, says Fodrini-Johnson. "Ask yourself: What is it that feeds you? What gives you pleasure and peace? Is it gardening, walking the dog, reading, painting, playing tennis?" Make your list, then make sure to keep these things in your life.
Many caregivers unknowingly make things harder on themselves by trying to take care of their loved one's every need, all by themselves, says Fodrini-Johnson. "Most of us want to feel independent, but the truth is that no one is capable of doing everything alone. We're all interdependent, meaning we need other people in our lives."
Leaning on Others
But what if you've already asked for help-from every other family member, perhaps-and gotten nowhere? Then get creative: "Even if everyone you know has said no, there are churches and other places that would help you find someone to come and spend a couple of hours with your loved one," says Fodrini-Johnson. It's absolutely imperative, she says, to start sharing the caring.
Unfortunately, many caregivers are reluctant to leave their loved one with anyone else-even if they say otherwise. This is especially true with out-of-the-home programs, says Fodrini-Johnson. "I hear a lot of excuses: ‘My dad wouldn't like that' or ‘My wife doesn't want to leave the house.' But when they bring their loved one in, it often turns out that he or she loves it." Why? Because the caregiver often is imposing his or her own sensibilities—or the parent's old sensibilities-onto the situation. But in many cases, the person has a new set of likes and dislikes (and limitations), meaning they'll do better in programs designed for their current needs instead of old activities that might be frustrating or embarrassing now.
Conquering Sadness
There's no question about it: Seeing a loved one in declining health is a gut-wrenching experience. It's also sad to think about all the plans you had—and your hopes for the future—all of which have been lost.
These feelings aren't reserved for those taking care of the elderly. Kim R. cares for her 12-year-old daughter, who has cerebral palsy and requires round-the-clock attention, and has had to deal with plenty of disappointment. "I used to think that I was different from the other parents with special-needs kids," she says. "I'd ask myself, ‘How do they hold it together and not be sad?' But now I know: We all put on a smile for the day-to-day stuff and we probably allow more to roll off our backs, because we have to. But it still hurts."
Pain like this is a natural response to the challenges of caregiving. But in many cases, it can progress into full-blown depression, which is a debilitating disease in its own right. The classic signs of depression-significant changes in your sleeping and eating patterns, an inability to find pleasure in previously pleasurable things, excessive crying or bouts of anger-should tell you if you need help. "Many, many caregivers become depressed," says Fodrini-Johnson.
And in many cases, seeing a therapist or psychiatrist can do wonders. "Just don't think of it as ‘seeing a shrink,'" she says. "You don't necessarily have a mental-health issue, but you do have a life-change issue." And just like tending to your physical health, taking care of your mental health is the only way you'll be able to care for someone else.
Protecting Yourself
Because caregiving can be so physically and emotionally consuming, a caregiver can easily cut himself off from the rest of the world. Perhaps he's so exhausted from all the doctor's appointments that he can't get up the energy to go out. Or maybe he feels embarrassed because his loved one's dementia often results in outbursts, inappropriate comments and other such moments. All this can lead to social isolation: friends stop calling and dropping by and the caregiver stops reaching out-or even leaving the house.
This type of self-imposed exile is problematic for several reasons, says Schultz. If you're depressed, you'll only feel worse. And you'll miss out on the input you'd get from other people. "They're your mirrors, and they'll tell you if you're neglecting your own health."
Perhaps the best antidote for social isolation is the support group, says Pozerycki. For one thing, it's a whole new circle of friends-people who don't have expectations of you or your loved one but can relate to everything you're going through. Unfortunately, many caregivers are reluctant to join a support group, often because they're afraid that talking about their situation will only make them feel worse. But in most cases, sharing your story—and hearing other people's stories—can relieve feelings of anxiety and loneliness and give you new ideas for managing your situation better.
Side-Stepping Guilt
Guilt is another common concern, says Pozerycki. Maybe you feel guilty if you take any time for yourself. Or you blame yourself for the fact that your loved one is living in a nursing home—or that she is even sick at all. But guilt can be poisonous for a caregiver, says Pozerycki, because it leaves you mired in negativity and prevents you from taking proper care of yourself-or your loved one.
Consider Kim's case: Because so much of the family's resources-their financial resources, their time and attention, and their emotions-goes to her daughter, Kim says that she sometimes feels resentful. "There is this feeling of being controlled and trapped," she says. But feeling resentful only makes her feel guilty later on, she says. And that's no help. "I just have to remind myself that feeling guilty just makes it a more difficult job."
In some cases, the caregiver gets an extra dose of guilt—from the loved one. Judith says that her father greets her at every visit with a classic parent-of-grown-children complaint: "I'll walk into his room and he'll say, ‘You've been gone so long and you never visit.' I'll tell him, ‘Dad, I've been here three times in the last week,' but it doesn't matter. He's the master of making me feel guilty."
"It's terribly upsetting when the patient adds to the caregiver's feelings of guilt," says Pozerycki. "It's just taking that knife and twisting it." But unfortunately, she says, it happens quite often. "Patients often are angry at their situation, so they'll take their anger out on the people closest to them—those who love them and take care of them." The important thing to remember, she says, is that your loved one isn't mad at you personally.
It's also important to remember that this situation is not your fault. "I counseled a man who had been forced to move his wife into a nursing home because of her advanced dementia," says Fodrini-Johnson. "He simply couldn't take care of her anymore, but he was feeling terribly guilty. So I reminded him that it was the Alzheimer's disease—not him—that put her there."
Confronting Anger
In many cases, the realities of caring for a loved one create anger. It's hard to resist comparing today's situation with what once was-or with what you hoped would be, notes Schultz. You'd rather look back than forward, but that will just hold you down-and keep you feeling cheated and wronged.
Joining a support group is a great way to get out of the anger trap, she says. "It's hard for people to let go of those feelings, but as they start to reach out to other people, it becomes easier to stop comparing what is to what was or what could have been. If it's just you and your loved one and the four walls, and you're surrounded by the photos and mementos and reminders of what you used to do or the plans you had, you might be angry forever. But if you can work through it, you can move on."
http://www.caringtoday.com/get-basic-caregiving/a-caregivers-guide-to-emotional-management
