When Carol Case and Ira Lieberman retired and moved from New York to San Diego, the ocean was supposed to be healing. Lieberman loved the water. Case wanted him to have peace as he navigated advanced Parkinson's disease.
"We did a lot of walking on the beach," Case recalls. "I did things that I felt would support him where he wouldn't feel the loss of what he had just given up."
For the first eight years after his 2003 diagnosis, Lieberman managed his symptoms well. But when the disease entered its advanced stages, their routine – and Case's role in her husband's care – changed dramatically.
Lieberman struggled with mobility issues, sleep disturbances, depression, and a decline in thinking skills. Case arranged her schedule around his care. She meditated, wrote in a gratitude journal, and kept on exercising.
But being a full-time caregiver for her husband took a toll on her health. Most nights, she only slept for a few hours. "It was then that I realized I couldn't do it by myself," she says.
What Advanced Parkinson's Looks Like
Advanced Parkinson's disease doesn't look the same for everyone, explains Matthew Barrett, MD, a neurologist and movement disorder specialist at Virginia Commonwealth University's Parkinson's and Movement Disorders Center in Richmond.
"Some patients have serious motor symptoms, unreliable responses to medication, balance impairments, falls, or even wheelchair use," he says. "There are also cognitive and neuropsychiatric symptoms – a [large] proportion of people with Parkinson's develop dementia."
The symptoms might vary, but those with advanced Parkinson's tend to have one thing in common: They all need caregiver support.
Barrett says the lack of mobility alone may mean that caregivers and loved ones need help with daily activities.
Challenges for caregivers
Caregivers can include loved ones or professional health care workers. They may help with things like dressing, eating, and bathing. They can also manage finances or medications.
Caregiving can be deeply personal and meaningful, but it can also come with emotional, physical, and financial trade-offs.
"I managed it [well] for the first 11 years," Case says. "But the last three years were really difficult."
Providing around-the-clock care can prove trying, and there can be physical challenges, too. Lieberman woke up multiple times during the night to go to the bathroom. Each time, Case had to lift him out of bed.
Caregiving came with emotional struggles as Case grieved the life they had shared together.
"As time went on, I was watching my partner, my powerhouse, my rock, disappear," she recalls. "Emotionally I shut down, and then I decided, 'I've got to get him through this, and I can't get through it being sad.'"
Caregivers need help, too
Know when to seek outside help. That can be difficult for many people. It starts by assessing your own needs and wishes as your loved one's Parkinson's progresses. But remember that caring for yourself helps you be there for your loved one.
Start small
Barrett often suggests starting small. Consider hiring help for a few hours, a few times per week. Think about getting enough help to allow you to run errands or meet friends for lunch.
You can always add to your caregiver team over time. Case knew that to be the best caregiver, she had to attend not only to her husband's needs but also to her own.
She ultimately hired a team of five caregivers, who rotated shifts to provide 24-hour care. She trained them, set schedules, and created detailed daily logs.
Consider the type of help you'll need
Along with much-needed help with mobility, meal preparation, and transportation to medical appointments, this team of professional caregivers allowed Case time for her own self-care. She had time to make appointments with her therapist and continue her meditation.
She also took up volunteering with the Michael J. Fox Foundation for Parkinson's Research, where she talked to newly diagnosed patients and their spouses or other loved ones about her experiences.
Maximizing Independence, Care, and Quality of Life
At home, caregivers often make sure your medications are taken correctly, meals are prepared, and safety measures like grab bars and shower chairs are in place. These can help you maintain as much independence as possible.
That sense of independence was what Case fought hardest to protect for her husband. She kept track of all the details to ensure he was prepared for appointments and getting the best care.
A caregiver's role extends far beyond basic help at home. They usually help you keep your dignity and quality of life as your symptoms worsen and your independence declines.
"The caregiver becomes critical for making sure that people still get outside the house," Barrett says. "They're going to need help to do it, but maintaining social engagement and mobility really affects quality of life."
Support for Caregivers
Even with help, caregiving for a loved one with advanced Parkinson's disease can sometimes be overwhelming and isolating. Barrett encourages caregivers and families to seek community.
"There are so many caregiver support groups," he says. "There's always a lot to be learned from talking to other people going through the same situation."
Case found connection and support through her work in advocacy and education. She also appreciated the chance to care for her husband as his condition progressed.
Lieberman passed away in 2018, and Case continues advocating for those living with Parkinson's disease and their caregivers in his honor.
"He was my rock," she says. "I just wanted to make sure I was his."
Show Sources
Photo Credit: Getty Images
SOURCES:
Carol Case, Parkinson's disease caregiver and advocate, the Michael J. Fox Foundation for Parkinson's Research, San Diego.
Matthew Barrett, MD, neurologist, movement disorder specialist, Virginia Commonwealth University's Parkinson's and Movement Disorders Center, Richmond.
