By Martha Schindler Connors, M.S.

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.”

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 disease.

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 of yourself, you’re going to die,” says Schultz. 

Beyond basic healthcare, caregivers ignore other aspects of their loves as well, 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, and then make sure to keep those things in your life. That’s why one of the most important aspects of caregiving is getting help when you need it.

Leaning on Others

What if you’ve already asked for help –from every other family member, perhaps –and gotten nowhere?  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 in declining health is a gut-wrenching experience.

Pain 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.

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 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.”

Martha Schindler Connors is a freelance writer who lives in Colorado.

Caring Today magazine offers practical advice for the family caregiver. To subscribe to Caring Today, click here.

This article was originally published in the Spring, 2005 issue of Caring Today magazine page 47. Reprinted with permission from Caring Today magazine.

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