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We provide you with articles on brain science, timely topics, and healthy living for those affected by neurologic challenges or seeking better brain health.  

Caregiving, Advocacy
By Paul Wynn

How Caregivers Can Advocate for Loved Ones

Speaking up for those in your care is important. So is letting them speak for themselves. Here's how to do both.

When Gabriele Clark and Jerry Ortiz met in 1998, Jerry had already been living with secondary progressive multiple sclerosis (MS) for about 14 years and had been on disability for a year after working as a tailor. He couldn't walk more than two blocks without resting, and he'd have periodic flare-ups.

Mara and Pat Dolan
Mara and Pat Dolan work together to fight Pat's amyotrophic lateral sclerosis (ALS). Courtesy Mara and Pat Dolan

Undaunted, the couple got married a year later and had four sons over the next 11 years. They also settled into a comfortable routine regarding Jerry's care. Initially, Jerry made his own doctor's appointments. "It was always a priority for him to make his own choices and advocate for himself," says Gabriele, a clinical coordinator at an ophthalmology practice in Aldan, PA.

Recently that arrangement started to change, says Gabriele, now 49. She has had to assume greater responsibility as Jerry's motor skills and cognitive abilities have declined. "More often, I have to take control and make decisions," she says. Visits to the doctor are a prime example: Jerry has trouble speaking and thinking clearly and relies on Gabriele for support. "If he doesn't speak up, I'll step in," she says. "I always know because he shoots me a look of panic when he can't answer a question."

As the Ortiz family has discovered, a progressive illness like MS can mean that family members' roles change frequently. Patients who once were able to speak for themselves may need caregivers to take over. The key is not to take on everything without talking about it first, says Diana Denholm, PhD, author of The Caregiving Wife's Handbook (Hunter House, 2012), which draws on her experience as a psychotherapist and nearly 10 years of caring for a husband who had several illnesses, including Parkinson's disease.

"Ask your family member if he wants you to be his advocate and how he might like you to do that, and be specific," Dr. Denholm says. "You could ask, 'Would you like me to go to your doctor visits or help set up your appointments?' And recognize that your roles and duties may change yet again."

Advocating for patients can take many forms. It may mean finding the best neurologist, identifying the right health care plan, researching the latest treatment options, or ensuring the best care at a hospital or assisted living facility. It doesn't mean, however, that patients shouldn't be involved in their own care and life decisions, says Miriam Freimer, MD, FAAN, professor of neurology and director of the neuromuscular division at the Ohio State University Wexner Medical Center in Columbus.

Nurture Empowerment

"Even patients who have limited mobility or cognition should feel like they have some control over what happens to them and can let their caregivers know what's helpful and what isn't," she says. "Sometimes caregivers treat patients like children. I don't think this is healthy for either the patient or the caregiver. Patients should always feel empowered to ask questions about their condition and treatment options."

That's a mantra Jane and Gary Davis of Fredericksburg, VA, try to live by. A retired family physician who used to enjoy showing off his clinical skills during doctor's appointments, Gary, now 67, was diagnosed with Parkinson's in 2006. Since his disease has progressed, Jane goes to the doctor with him. "He only talks a little bit now," she says. "I encourage him to be as involved as possible during appointments, but lately he's gotten very quiet, so he needs my help more."

Gary and Jane Davis
Jane Davis encourages her husband, Gary, to stay involved in his care for as long as he can. Courtesy Gary and Jane Davis

He still remembers to take his medication, which he orders online. He also schedules his own appointments and logs on to the patient portal for more information. "I encourage him to keep his brain healthy and stay involved in his care for as long as possible," says Jane, 67.

Caregivers who are advocates often know a lot about their relatives' disorder. Terri Corcoran's dogged research about her husband Vince's symptoms, for example, helped them get a diagnosis. Just before their wedding in 1999, Vince, then 65, developed problems with his gait, balance, and cognition. By 2004, he had become physically and mentally disabled. Visits to several medical centers yielded no answers, but Terri was undeterred. She took Vince to a fifth neurologist, who was familiar with a genetic condition called fragile X-associated tremor-ataxia syndrome, which involves all the symptoms Vince exhibited. An MRI confirmed damage in parts of the brain associated with the syndrome. A subsequent DNA test confirmed the diagnosis.

Terri was determined to keep her husband as healthy as possible and out of a nursing home. She set up Google alerts and started reading medical journals and bringing articles to doctors. She searched for potential therapies online, consulted a nutritionist, and hired home health aides and a physical therapist when Medicare would not provide them. Knowing Vince liked to be in charge, she made every effort to give him a sense of autonomy. She bought a TV remote control with only a few buttons, so he could channel surf, and found adaptive utensils with weighted handles, so he could feed himself.

"He was physically and mentally disabled for almost our whole marriage," says Terri, 68. "But I wanted us to stay together in our home, so I did whatever I could to care for him until the end. Luckily, I was able to do that.

Don't Give Up

Persistence paid off for Sharon Ames of Fort Lauderdale, FL, when her previously healthy mother, Sheila Rudoltz, started experiencing memory loss, incontinence, and gait problems at age 80. "My family and I noticed physical and personality changes in our mom that mimicked symptoms of Parkinson's disease and Alzheimer's disease," she says.

Ames and her sister and brother, who is a radiology oncologist, took their mother to see multiple doctors. One told them their mom's symptoms were part of aging and they should just accept them. Ames and her siblings were not willing to do that.

Finally, an internist recommended their mother undergo further testing, including an MRI with contrast. That exam revealed normal pressure hydrocephalus, a treatable brain disorder in which excess cerebrospinal fluid builds up in the brain, causing thinking and reasoning problems, difficulty walking, and loss of bladder control. Once the fluid was drained, Sheila started acting and feeling more like herself. Now 84, Sheila is back to her active, engaged life.

Ames, 58, advises other families to remain patient but resolute. "Talk about it with family members and friends because those discussions may lead to answers," she says.

Look for Clinical Trials

In 2016, Pat Dolan was diagnosed with amyotrophic lateral sclerosis (ALS), a neurodegenerative disease that causes muscle wasting. Even though his doctor told him his disease would progress in a typical fashion, he was not accepted into a clinical trial testing a new stem cell treatment because his condition was progressing "a bit on the slow side." That hasn't stopped Pat and his wife, Mara, from exploring other avenues of treatment.

"We're fighting against the clock with this disease. We have no time to waste," says Mara, 49. "I'm fighting for me because I still want the future I've dreamed of with Pat; I'm fighting for him because he spent his life giving to others and now it's his turn to receive."

Pat's fighting too. Because he's had ALS for more than two years, he doesn't always qualify for ALS trials. Instead, he's joined I Am ALS, a national movement of individuals with ALS and their caregivers who lobby pharmaceutical companies and the government to work together to make experimental treatments more available. Pat, 49, also is part of Stay in Motion, a grassroots project that he and an athletic trainer established to help ALS patients stay active. For Pat that means working with a personal coach to improve joint health, circulation, and range of motion while conserving energy.

As physical abilities and speech decline, it's important for ALS patients and caregivers to look ahead and acknowledge that they'll both need more help, says Mark Bromberg, MD, PhD, FAAN, co-director of the ALS clinic at the University of Utah Medical Center in Salt Lake City. Dr. Bromberg, author of Navigating Life with Amyotrophic Lateral Sclerosis, part of AAN's Brain & Life Books series (formerly Neurology Now Books), adds that "caregivers should keep an open line of communication with their loved ones about what they need without stepping in too quickly. ALS patients may start off by asking for help to button their shirt but later admit they can't even put on a shirt."

Gabriele Ortiz knew she could not continue caring for her husband because as the family breadwinner she had to work full-time. That meant Jerry was home by himself during the day. Friends and neighbors saw him riding his electric scooter (which he uses to get around) in the road rather than on the sidewalk.

Things came to a head when Jerry landed in the hospital with meningitis. During his monthlong stay, Gabriele spoke to his doctors and nurses and other staff regularly to be sure Jerry got the care and attention he needed. "When it was time to come home, I insisted on hiring home aides to keep him safe, but he refused at first." Gabriele moved him into a rehabilitation center for a while until he agreed to have a home aide.

Gabriele hired numerous aides over five years, but it was difficult to find reliable help, even with her checking in and calling home regularly. "It was becoming obvious that he needed round-the-clock care at an assisted living facility because we couldn't find good aides, and he wasn't safe by himself."

She finally got Jerry into a facility near their home that accepted Medicaid. "Making sure my husband receives the best medical attention requires a lot of work," admits Gabriele. "I visit at different times of the day to connect with a variety of staff and see how they manage his care."

Caregivers often feel lonely and isolated. To counter that, Dr. Denholm recommends talking about your situation with family and friends. "Keeping it bottled up is not good for anyone," she says. "Find people you trust and talk to them." Jane Davis has recently started seeing a licensed social worker. "I hope therapy will help me deal with the tough times through this Parkinson's journey," she says.

Terri Corcoran found solace in faith, converting to Catholicism, her husband's religion. She says the priests who came to their home helped guide her through despair. (Her husband died in 2006.) "I did not know how I could cope, but as I did more reading and praying, I found strength."

Terri also joined the WellSpouse Association, a group dedicated to spousal caregivers. "Meeting other people facing the same challenges was comforting."

Resources for Caregivers