In 2007, Kathy Lowrey's husband, Bobby, who was 70 at the time, was diagnosed with Lewy body dementia, a degenerative form of dementia with symptoms that include mood changes, visual hallucinations, sleep disorders, changes in autonomic functions such as breathing and digestion, and memory, thinking, and movement difficulties. As she dealt with her husband's overwhelming needs, Lowrey says her own health dropped to the bottom of her list of priorities. She estimates that she saw her primary care doctor just twice in seven years.

"He was my only focus," says the 55-year-old resident of Bald Knob, AR. "As things got worse and he couldn't be left alone, it was increasingly difficult for me to pay attention to anything else, including my health."

Lowrey's husband's military benefits covered the cost of having a certified nursing assistant come to their home for two hours each day to help care for her husband. But Lowrey's doctor's office was a full hour's drive away—too far to travel, given the short window of respite care. Instead, she says, she devoted that time to doing "the essentials of the home"—grocery shopping, yard work, and home repair. "There was no way I could go to the doctor," she says.

Soon after her husband died in February 2014, Lowrey says she developed a rash on her face, which doctors attributed to stress. She often got disoriented while driving—a store that had been on one side of the street suddenly seemed to be on the other—and she started experiencing chest pains. After 30 days of wearing a heart monitor, doctors concluded she had not had a stroke or a heart attack.

"My doctors had no idea what happened, but I really felt it was related to not caring for myself for all those years. It all started to creep up on me," she says.

Lowrey took the scare to heart: She changed her eating habits and started exercising, even running her first 5K race. "I have not experienced any more chest pains, nor do I have any adverse health issues," she says. "I consider myself very blessed. I know other caregivers who can't say that."

The Emotional Toll

Soon after his wife, Elaine, then 67, was diagnosed with Alzheimer's disease in 2007, Martin Schreiber became her full-time caregiver. But as time progressed and Elaine's condition worsened, Schreiber's health also began to decline. He was anxious and often felt short of breath. He also was angry and impatient with family, friends, and strangers.

"I was horrible. I was irrationally irritable, yelling across the counter at the people at the car rental place. It made no sense," Schreiber, who is now 79, remembers. "Because Alzheimer's is a progressive disease, I never felt I was doing enough. It took a toll and left me with an enormous amount of guilt."

Eventually the Schreibers' four children intervened. They encouraged their father to find doctors to address his health problems. Aside from his irritability, anxiety, and shortness of breath, Schreiber was also depressed and had gained 20 pounds in 18 months. He sought counseling from the Alzheimer's Association, began a regular exercise routine with a trainer, and had a pacemaker implanted. He believes taking these steps and learning all he could about his wife's disease saved his life.

"They say caregivers of Alzheimer's patients have a higher chance of dying earlier, become sicker more quickly, and have more problems in the workplace than caregivers of any other disease," says Schreiber, who, with Cathy Breitenbucher, wrote My Two Elaines: Learning, Coping, and Surviving as an Alzheimer's Caregiver (Book Publishers Network, 2016). "Caregivers, no matter where they or the patient are on the illness path, have to understand that life can get better."

Schreiber's health rebounded, but Elaine continues to decline. She can no longer walk and lives in a memory care assisted living facility. Schreiber says moving Elaine from the family home was a difficult decision. "I know that she is in a comfortable, secure place surrounded by love, and I feel better because of that," he says.

A Growing Problem

The experiences of Lowrey and Schreiber are all too common and supported by research. A 2015 report by the National Alliance of Caregivers and AARP found that among those caring for someone for more than five years, 20 percent reported their health to be fair or poor, compared to 14 percent of those who had been a caregiver for less than a year. A study published in the American Journal of Hospice and Palliative Care in 2015 found that the majority of caregivers say they don't manage stress well. And those who also work outside the home, care for two parents simultaneously, have the least amount of outside assistance, and have spent more time as a caregiver reported more health problems and considered caregiving more burdensome.

To address the growing needs of nonprofessional caregivers, legislators passed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act in January of this year. The bill requires the Department of Health and Human Services to develop a national strategy for this group by seeking recommendations that address education, financial security, and workplace protections for caregivers. The American Medical Association also recognizes the strain of caregiving: Its 2018 guide for physicians includes a "Caring for the Caregiver" section, which encourages doctors to keep an eye on their patients' caregivers as well as their patients to look for signs of caregiving burnout, which can negatively impact patient care.

A Vulnerable Population

Older adults and those caring for people with neurologic disorders are particularly vulnerable. More than 16 million family members and friends are providing unpaid care for people with dementia, which often involves providing assistance getting in and out of bed, bathing, and toileting, according to the Alzheimer's Association's 2018 Alzheimer's Disease Facts and Figures report. About 35 percent of dementia caregivers say that their health has declined because of their caregiving duties; by comparison, 19 percent of non-dementia caregivers report that their health has worsened.

Put Your Own Oxygen Mask On First

"When I talk about caregiving, I like to use the oxygen mask analogy. Flight attendants always say, 'In the event of an emergency, if there's a loss of cabin pressure, the oxygen masks will fall, and it's important to put your own mask on first before helping anyone seated around you,'" says Amy Sullivan, staff clinical health psychologist and the director of behavioral medicine at the Mellen Center for MS Treatment and Research at Cleveland Clinic. "This is a very important way to describe how to take care of yourself before taking care of anyone else."

Keep a Full Tank of Gas

A car always runs better on a full tank of gas, says Amy Goyer, AARP's family and caregiving expert and the author of Juggling Life, Work, and Caregiving (AARP, 2015). "That was my 'aha' moment. I was expecting to run just as efficiently on an empty tank of gas, and that just doesn't make sense," she says. "Using that analogy, I look for quick tank fillers such as a five-minute call to a friend, a cup of coffee, or a quick jump on the trampoline in my bedroom. If I see it in this practical way, I don't feel so guilty."

Help Is a (Good) Four-Letter Word

It's important for caregivers to reach out for help before they even think they need it, says Bob Mastrogiovanni, president of the Well Spouse Organization, a nonprofit group that offers in-person, volunteer-run support groups throughout the United States and Canada as well as ongoing telephone support groups.

"Caregivers usually come to us when they're burned out and saying, 'Oh my God, we need help,'" says Mastrogiovanni, 71, of Cherry Hill, NJ. "If you take good care of yourself, you won't get burned out."

In 1991, Mastrogiovanni and his wife, Cathy, sought counseling as she struggled to accept her diagnosis of progressive multiple sclerosis. After meeting with the couple, the therapist recommended that Cathy book follow-up appointments and handed them a giant book listing support meeting options. That's how Bob connected with Well Spouse, where he has also been a group leader and national treasurer. Cathy Mastrogiovanni, 70, is now receiving hospice care at home.

"Both partners in a marriage, healthy or sick, should feel a sense of satisfaction," Mastrogiovanni says. "You're more than a caregiver. You're a human being. Get help, paid or unpaid, to give you the time you need to be yourself. You owe it to yourself and your partner."

Let Go of Guilt

Some caregivers worry that asking for help means they're not good at their job, says Monica Moreno, senior director of care and support at the Alzheimer's Association. "That's not the case. To care for the person with the disease, they need to care for themselves," she says. "Asking for help doesn't mean giving up the primary caregiving role. It means being a better caregiver."

Talk About Your Situation

"Tell people what's going on. Tell as many people as you can, because you don't know who will have answers or ideas," says Trish Hughes Kreis, 57, who cares for her 52-year-old brother, Robert Hughes, who has drug-resistant epilepsy.

Kreis learned this lesson the hard way. She's been her brother's primary caregiver for five years, and although he is eligible for 14 days of respite care each year, Kreis has been unable to find a facility to take him on a short-term basis because of his extensive needs.

The one time she decided to put Hughes in a temporary care facility to concentrate on her daughter's wedding, he fell several times and came home with a soccer ball-sized bruise on his side. "I have saved Robert's life multiple times because I knew something was wrong with him before doctors did," says Kreis, who also works full-time managing a law office with 55 employees. "I always felt like I had to do everything 100 percent."

Then, in early June, the left side of her body went numb and her face felt thick, as if it had been injected with novocain. Tests showed that Kreis had had a stroke. "It was a big wake-up call from the universe," Kreis says. "I'm fortunate I only have some numbness. I can walk. I can talk. I have cognition. I have all of those things."

When Kreis told her brother's doctors what had happened, one of the doctors offered to put Kreis in touch with the practice's care manager to see if other resources were available for Hughes. Kreis hadn't even known the position existed. "I need respite, and I need to reduce my stress," she says. "I've got to really start advocating for myself as well as others."

Your Health Checklist

These strategies can help caregivers avoid burnout and preserve their health.

1. COMMIT TO YOURSELF. Caregivers must make a commitment to take care of themselves as well as they care for their patients. "Caregivers believe their loved ones are more vulnerable than they are. Sometimes that's true, but you can't do that forever," says Amy Goyer, AARP's family and caregiving expert.
2. ENLIST OTHERS. Build a caretaking village of friends, family, and outside organizations—anyone you can rely on to share some of the responsibility. The Alzheimer's Association offers online resources for creating a "care team calendar," which allows community members to sign up for specific duties such as preparing dinner or staying with a patient to give the caregiver a break.
3. TAKE A TIME OUT. Schedule nights away from caregiving to meet friends for coffee, attend a support group, or simply be alone with your thoughts. Goyer, who compares staying healthy to keeping a car filled with gas, recommends five-minute energy boosts unrelated to caregiving such as taking a walk around the block. "Become aware of what gives you a little more oomph to keep you going," she says.
4. CONNECT WITH OTHERS. "It's important for caregivers to stay socially connected and to have lives outside of caregiving," says Amy Sullivan, staff clinical health psychologist and the director of behavioral medicine at the Mellen Center for MS Treatment and Research at Cleveland Clinic.
5. MAKE YOUR HEALTH A PRIORITY. Schedule and keep regular appointments with doctors and dentists, and don't ignore warning signs of poor health such as shortness of breath or chest pains. AARP's Goyer refers again to the car analogy. "You have to get tune-ups, or you're not taking care of anybody," she says. "Considering these appointments as necessary and not as extras is a very different mindset."
6. DON'T SKIMP ON SLEEP. Lack of sleep can be especially detrimental for caregivers and can add to their emotional trauma, says Martin Schreiber, who cared for his wife, who has Alzheimer's disease. "A lack of sleep impedes your ability to think straight," he says. "There are people who thought they had Alzheimer's and it was really sleep deprivation."
7. SCHEDULE EXERCISE. Physical activity is not only good for overall health; it's good for caregiving, too, especially if caregivers need to lift and physically support their patients. "The tasks of caregiving require me to be strong," says Goyer, who tries not to miss her weekly workouts. "When you feel guilty about doing anything for yourself, try to see it as a practical thing, not a selfish thing."
8. LEARN WHAT HELP IS OUT THERE. Organizations devoted to caregiving as well as disease-specific organizations are eager to offer assistance. The Alzheimer's Association, for example, has a 24-hour helpline at 800-272-3900 and an online community resource finder, says Monica Moreno, senior director of care and support at the organization. "It really breaks our hearts when we meet families who say, 'If only I'd known this existed when my mother had Alzheimer's or when my grandfather had Alzheimer's,'" she says.

6 Resources for Caregivers

1. AARP: A nonprofit organization dedicated to the interests of people over the age of 50, AARP has multiple caregiving tips and guides.
2. BrainandLife.org: Browse our website to read our collection of articles on caregiving.
3. The Epilepsy Foundation: This nonprofit patient organization dedicated to supporting people with epilepsy and other seizure disorders offers tips and guidance for caregivers.
4. 365 Caregiving Tips: Experienced nonprofessional caregivers, including Trish Hughes Kreis and Kathy Lowrey, provide tips and strategies for taking care of patients and yourself.
5. National Multiple Sclerosis Society: Like many patient organizations, the National MS Society produces a guide for caregivers.
6. Well Spouse Association: This nonprofit group provides support for caregivers and educates health care professionals and the general public about the challenges of the "well" spouse.