Carolyn Stein's husband, Jerry, had always been active and athletic. Then one day, out of the blue, his tennis coach called her. "He said, 'I think your husband has a brain tumor or has had a stroke. He can't do a thing with the racket, and he has no balance,'" she recalls. In reality, her husband, then 65, was displaying early signs of Parkinson's disease. That was 20 years ago; ever since, Stein, who turned 80 in September, has been her husband's caregiver, balancing those responsibilities with her work as a management and business consultant.

The arrangement worked well until about a year ago, when her husband's condition started deteriorating. He could no longer walk or use his hands, and he was increasingly fearful about being left alone. Meanwhile, Stein had developed a thyroid problem that was wreaking havoc on her nervous system. Reluctantly, she realized she needed extra help.

Stein's family thought so, too. In response to their prodding, she agreed to employ in-home aides five days a week. They sit with her husband, coax him out on walks, feed him lunch, and oversee his medication. This gives Stein time to work in her home office and run errands.

Despite the extra help, Stein admits she doesn't exactly feel relieved. "I'm not going to say it's been wonderful having someone come in and take over. I've been a little negative about it, and I've struggled with the lack of privacy. It makes me uncomfortable to have someone puttering around the kitchen, which is my domain," she says. "There's a dichotomy between needing help and wanting help."

Stein's reluctance to accept outside help is fairly typical, says Barry J. Jacobs, PsyD, a clinical psychologist, family therapist, and author of The Emotional Survival Guide for Caregivers (Guilford Press 2006). "When caregivers relent, it's often with a great deal of trepidation about whether the help will actually be helpful and whether the care recipient will approve," he says. This can dredge up a potent mix of conflicting emotions.

We asked caregivers, psychologists, and other experts for advice on how to deal with these feelings and resume your life afterwards—whether you are contemplating hiring professional in-home help or you need to place your family member in adult day care, a nursing home, or another care facility.

Manage Your Worries

If you're relinquishing care, you may feel anxious about losing control. Suddenly you've gone from watching over a person's every movement to checking in periodically or at the end of each day, and that can be unsettling, says clinical psychologist Sara Qualls, PhD, a professor of psychology at the University of Colorado and author of six books on mental health and aging. If you have chosen to hire an in-home aide, you may also worry about how you or your family member will handle having a stranger in the house.

A good aide is reliable, flexible, and knowledgeable—but even then, it can take a while for that person to win everyone's trust, Dr. Jacobs says. "Sometimes even competent aides may not have the right personality for certain situations," he says. He or she may be too talkative, for example, or do things you find intrusive, like tidying up closets without being asked. Be prepared for a trial and error period while you establish a routine that works for you—and be sure to resist the urge to give up and revert to doing everything yourself, he says.

Stein was tempted to throw in the towel after she rejected two aides, but she persevered until she found several with whom she was comfortable. She also recognized that the discomfort she feels is more about her and her own desire for control, so she manages it by setting boundaries. She's still the one who stocks the kitchen and plans Jerry's meals, but the aides prepare them. And she has the aides come later in the day, so she can retain her morning routine and relish some privacy before the day kicks into gear.

Let Go of Guilt

Many caregivers feel guilty for admitting they need outside help, and are often reluctant to seek it out. "If you're not taking care of everything yourself, it can feel like you're somehow failing," says Maggie Schold, whose brother, Uriel, has primary progressive multiple sclerosis (MS) and lived with her and her husband and their daughter in her Albuquerque, NM, home for seven years.

At first, Schold shared caregiving duties with her mother, Mary Robert, who was retired and could stay with Uriel during the day while Schold worked. But when her stepfather became critically ill and required her mother's full-time care, Schold knew she couldn't continue on her own. She kept things afloat with home health aides, but as her brother's condition worsened and the insurance paperwork piled up, Schold began to feel overwhelmed. "I couldn't leave for work until the aides arrived, so if they were late, I was late. Having to be home so they could leave on time every day became very difficult. I felt like I was always fixing things and trying to solve problems."

Then, two years ago, Uriel developed a series of infections related to his condition, including pneumonia, and was hospitalized on and off for six months. Concerned about his increasingly fragile state, Uriel's doctors urged the then-38-year-old to move into a nursing home—a decision that triggered both guilt and relief in Schold. "It took a whole team to care for Uriel, and now I don't have to try to do medical things I'm not qualified to do," she says. "But even though I didn't desert him, it sometimes feels like I did."

For caregivers facing the prospect of placing a family member in a nursing home, the decision is especially fraught. "Many neurologic disorders affect the care recipient's ability to recognize the scope of the problem," says Dr. Qualls. "Often, for the first time, the caregiver has to say, 'I trust my judgment about what you need more than I trust your judgment.'" People tend to feel tremendously guilty about the fact that the person's quality of life could be diminished, and about not being able to "fix the unfixable," she says.

"I tell caregivers that guilt is a cul-de-sac; it doesn't lead anywhere," says Dr. Jacobs. "Guilt goes with the territory and has to be tolerated. It's a normal and expected emotion in these situations." Once caregivers get a little perspective and distance from their guilt, it tends to ease up, he adds. When Schold feels pangs of guilt, she reminds herself that her brother hasn't had any complications that have landed him in the hospital.

Allow Yourself to Feel Relief

When she first started having aides come to the house, Stein felt immediate relief. "It was wonderful to be able to simply take the keys and leave the house. Lifting Jerry and putting him and the wheelchair in the car had been really difficult for me," she says. She also concedes that the in-home aides are often more patient with her husband than she is. "I don't like this about myself, but if I'm being honest, I can get frustrated and angry when I'm caregiving. He gets irritated when I'm not in the house; it bothers him. There's resentment in both directions."

It's common for caregivers to be flooded with relief once they're no longer providing hands-on care, Dr. Jacobs says—and many of them will also immediately feel guilty for being relieved. "They love that person, so they don't think they're supposed to feel that way. But it's totally normal."

Reach out for Support

"Every time there was a change, my first reaction was, 'I'm not ready for this,'" Stein recalls. There was the time her husband started seeing imaginary people on their balcony, for instance. "I remember thinking, 'I really don't know how to deal with this.' It alarmed me." Psychosis, most commonly in the form of visual hallucinations, happens to about one-third of people with Parkinson's disease, according to Michael Okun, MD, national medical director of the National Parkinson Foundation, a professor at the University of Florida Health Center for Movement Disorders and Neurorestoration, and a Fellow of the American Academy of Neurology (FAAN). It's often induced by the drug therapy used to treat the disease, he says.

Stein had tried going to a support group back when her husband was first diagnosed, but at the time she wasn't ready. "I started crying, got up, and said, 'I can't be here.'" But then, five years ago, another support group formed in her community, and she tried again. This time around, she found it helpful to share her feelings and hear other perspectives.

"The best thing you can do for yourself is communicate with other caregivers," says Stein. "If there isn't a support group near you, start your own. Even if it's two or three people, you can meet at each other's homes to cry, laugh, share ideas, and help each other."

For Schold, even though her brother signed off on the decision to enter a nursing home, she still finds herself grappling with remorse, especially when he comes home for holidays or his birthday. When Schold starts second-guessing the family's decision, she checks in with a colleague who went through something similar with her mother and knows how to reassure her and give her perspective.

Acknowledge Loss

"Losses are part of the trajectory for caregivers, especially if they are caring for a family member with a deteriorating neurologic disease," says Dr. Qualls. "The grief continues as they lose more parts of the person."

That has been Veronica Evans' experience. Her husband, Mark, began exhibiting signs of dementia about seven years ago, when he was in his late 50s. For several years, his symptoms were mild enough—putting things away in odd places around the house, for instance—that he was able to live at home with Evans as his caregiver. But when his roaming behavior worsened—he began to leave the house and just start walking—Evans knew she needed professional help to handle the situation.

Then, his doctors discovered he had a slow-growing pancreatic tumor, which may have been the cause of the dementia. (A malignancy can cause an autoimmune response in which antibodies travel through the body and cause brain damage, says Gregory S. Day, MD, a post-doctoral fellow at the Knight Alzheimer Disease Research Center at Washington University in St. Louis and a member of the AAN.) Mark underwent surgery to remove the tumor, which was successful. He was moved to a nursing home to recover, but his mental and physical condition declined so rapidly that he was never discharged. "Letting go of hope was really hard. I had to adjust to the fact that he was never coming home," Evans says. "I never see the changes coming. Instead, I'm always looking back and realizing what I've lost, what's now gone."

Sharing your loss with a support group can be hugely helpful, says Dr. Jacobs. "Talking about it will help you through the transition and allow you to begin to formulate a future for yourself," he says. "It takes a long time to reclaim a sense of a normal life. It won't be the same, either. It will be different, because the experience of caregiving has changed you."

Recognize How You've Grown

For many people, caring for someone is deeply rewarding. They learn the disease and its medical lingo and find themselves taken seriously by health professionals. The work is meaningful and purposeful, and makes them feel capable. "Being a caregiver can become a central part of a person's identity, especially if he or she does it for years, and to no longer have that identity can feel like a loss, too," says Dr. Jacobs.

If you can appreciate what you've accomplished during your caregiving years, you may realize that you've gained more than you've lost at the end of it, Dr. Jacobs says. In caring for her husband, Evans realized how resilient she was and that she was capable of taking the reins. "My husband had always taken care of everything for both of us. When he couldn't do that anymore, I really had to step up." In the process, she also learned to be more empathetic. "I've never been an overly friendly person when it comes to strangers, but I've noticed a difference lately, especially when I'm at the hospital. I'll reach out to other people and strangers will reach out to me; I have an ability to connect instantly with someone in pain that I didn't have before. I'm a lot more compassionate now, which has been a big change in my personality."

Recalibrate Your Role

Many caregivers who recruit outside help find that they stay very involved in their relative's care. "You may not be cooking meals or toileting the person, but that frees you up to be the advocate, case manager, and emotional support," Dr. Qualls says.

For Evans, that new role was like a full-time job, especially when her husband was still seeing lots of specialists. "Accepting the quality of care at nursing homes was extremely difficult for me. I had more free time, but I didn't necessarily have any control over whether or not my husband got a bath." To make sure her husband got the right medications and his room was kept clean, she stayed very visible and asked lots of questions of the staff. "It's a different type of role, but it's an extremely demanding one."

Consider Your Next chapter

When former caregivers are ready, Dr. Jacobs helps them imagine their future, based on their values and life experiences. Some continue caring for others, he says. They might find another family member who needs their help, volunteer at a hospital, or start a job as a home health aide, for example.

Dr. Qualls encourages the caregivers she counsels to resume hobbies and reinvest in relationships that may have languished during their caregiving years. For example, if you and your siblings spent years focused on caring for a sick parent, it can be poignant to realize you'll need a new reason to gather, she says.

For Schold, relinquishing her brother's full-time care affords her and her husband more time to attend school plays and parent-teacher conferences together. "It's great to be spontaneous, like, 'Let's eat out tonight!' For years that wasn't possible," she says. Growing up in a house where her parents were caregivers made their daughter more independent, which is a good thing, Schold says. "Now she's starting ninth grade, so there are only a few more years she's going to be home with us, and it's been terrific having more time with her." Her relationship with her brother has improved, too. "Because I don't have to try to be a medical professional, I'm a lot nicer, and it's allowed us to have better quality time together."

Beware of Burnout

Overstressed caregivers are vulnerable to depression and other health problems. Protect yourself with these tips.

Recognize red flags. "If you start yelling at the person you're caring for, or worse, become neglectful or abusive, that's a clear sign the plan needs to change immediately," says Barry J. Jacobs, PsyD, a clinical psychologist, family therapist, and author of The Emotional Survival Guide for Caregivers. Another red flag: You start resenting your caregiving duties, like having to travel across town multiple times a day, says clinical psychologist Sara Qualls, PhD, a professor of psychology at the University of Colorado and author of six books on mental health and aging. Don't feel ashamed by it, she advises. Instead, recognize it as a sign that you are overwhelmed and may need help.

Ask for help earlier. If you're feeling more negative than positive about your situation, it's time to reach out for more support, says Dr. Qualls. Wait too long and you'll have no breathing room to think about getting help. That's what happened to Maggie Schold, the longtime caregiver for her younger brother, who has primary progressive multiple sclerosis. Once she got overwhelmed, it stressed her out to imagine hiring help. "Waiting to ask for help until there's an emergency, or you're at the point where you're thinking, 'There's no way I'm going to get through this day and get everything done,' makes it that much harder," says Schold.

Start small. Dr. Qualls suggests reaching out to a care manager (you can find one at the Administration for Community Living's Eldercare Locator) who can be hired at an hourly rate to assess your situation and let you know what services are available to you.

Listen to loved ones. "If family members or friends express concern about how you are coping, hear them out," says Dr. Jacobs. They may have perspective on your situation that you can't see. Of course, there's a difference between showing concern and offering unsolicited advice. "Most people are fixers, and they want to give advice," says Veronica Evans, who cares for her husband, who has dementia. The bottom line: Try to keep an open mind and not shrug off someone's doubts if, in your gut, you suspect those doubts might be valid.

Join a support group. "It's so important to have conversations with people in similar circumstances. It helps normalize your own experience and reactions so you don't feel guilty about your emotions," says Dr. Jacobs.

Talk to a Medicare counselor. The Medicare counseling program is a great resource for free, unbiased advice about your insurance benefits, options, and rights, Schold says. "Professionals know how to navigate these waters, and once they take over, that frees you up to deal with your emotions." The State Health Insurance Assistance Program National Technical Assistance Center can help you find a program in your state.

Consider talk therapy. If you're struggling with anxiety or depression, talk to your primary care doctor, says Dr. Jacobs. "Your physician can refer you to a mental health professional who can provide more intensive support and treatment than a support group or telephone counseling," he says. A therapist can help you cope with feelings of guilt or sadness and, if possible, help you reduce your caregiving demands.

Resources for Help

Many patient organizations are well-positioned to provide support and resources for caregivers. Here are some to consider:

• Alzheimer's Foundation of America, 866-232-8484
• Parkinson's Foundation, 800-473-4636
• ALS Association, 800-782-4747
• Muscular Dystrophy Association, 800-572-1717
• National Multiple Sclerosis Society, 800-344-4867
• Brain Injury Association of America, 800-444-6443