What You Need to Know as a Caregiver for Someone Who Has Parkinson’s Disease

Every Parkinson’s journey is different

“Parkinson’s, by its nature, changes over time,” Dolhun says. But how it changes and at what speed varies widely, she says. That means the roles of care partners vary and change as well.

Some newly diagnosed people need little or no day-to-day help, Janicke says. Others “have been struggling for years,” and need a lot of help, she says.

“On the whole, Parkinson’s is slow moving,” she says. Someone working and living independently might keep doing that for a while.

Doctors don’t have a “crystal ball” to tell new patients and their care partners what to expect, Dolhun says. But after a couple of years, she says, doctors often have a better sense of someone’s likely path.  

The Rafaloffs say they are grateful that Gary’s symptoms have progressed slowly. His sleep problems and balance have worsened, and his speech and walking have slowed, but Bobbi says, “Gary's cognitive abilities have just sharpened somehow.” Mental decline “was my greatest fear when he was diagnosed,” she says.

Tonia Smith, 50, a Cincinnati health educator and advocate, says her mom, Joanne Reeves, 70, is still living safely on her own, five years after a tremor in one hand led to her Parkinson’s diagnosis. She says her mom does need more help with things like sorting medications and sometimes freezes up when she moves. Smith says she calls Reeves every day to make sure she’s OK.

Get support as a Parkinson’s caregiver

It’s important to build a knowledgeable care team, Dolhun and Janicke say. The doctors who know the most about Parkinson’s are neurologists with extra training called movement disorder specialists. They are not in every community, but it can be worth traveling to see them, the experts say. A directory of the specialists is at the website of International Parkinson and Movement Disorder Society.

Even if your loved one doesn’t need them yet, it’s also a good idea to learn about the nearest physical therapists, occupational therapists and speech therapists trained in Parkinson’s, Janicke says.

She also urges families to learn about palliative care, which focuses on quality of life at any stage of the disease. Palliative professionals might address symptoms such as constipation and pain and provide mental health support to patients and care partners, she says.

Your loved one might also benefit from a Parkinson’s exercise class, she says. Studies show exercise can slow Parkinson’s progression, ease symptoms and lower stress.

And, of course, care partners are key members of the team. If you can, you should go to doctors’ appointments with your loved one, Janicke says, as an extra pair of ears and as someone who can share crucial information.

Gil Kim, 66, says he and his wife Gina, 64, built a “great support system” in Atlanta after she was diagnosed 12 years ago. She had a movement disorder specialist, a good support group and specialized boxing, tai chi and pole-walking classes. When they moved to Madison, Mississippi, to be closer to grandchildren, he says, they found almost none of that — so they reinvented it. He and Gina now host a monthly support group with up to 60 people, he says, and have built a Parkinson’s boxing class at a local church into a larger program.

Still, he says, they now must travel more than 100 miles to see a movement disorder specialist in Alabama. He says he realizes that’s not something everyone can do.

Care partners may walk a fine line

How much help should you offer your loved one with Parkinson’s? How much of your own research should you share with them? Who can you tell about the diagnosis?

Caregivers and patients may not always agree on such things, Dolhun and Janicke say. Care partners must often walk a fine line between what they want to do and what their loved ones want.

Honest conversations are best, Dolhun says. “Ask the person, ‘How can I be most helpful now?’ ”  You may hear, for example, that the person with Parkinson’s doesn’t want to know every detail of your research but would appreciate hearing what’s essential.

Tonia Smith says she respects her mother’s independence, but it’s been hard at times, such as when Smith spent months, to no avail, urging her mother to try a Parkinson’s exercise class. She was delighted when her mom eventually discovered a class on her own.

Another common scenario: Many people with Parkinson’s don’t want to go public with their diagnosis at first, Dolhun says. But over time, trying to hide symptoms can be stressful for them, and keeping the secret can be stressful for their care partners. Sharing the information is sometimes a relief, she says.

New challenges will arise as you manage Parkinson’s symptoms

As Parkinson’s progresses, daily activities can get harder. Someone who loved eating out may be reluctant to go because their shaking hands make eating messy. Someone who was a sparkling conversationalist may struggle to be understood as their speech gets slower and quieter. A home that seemed safe enough suddenly seems unsafe for a person with worsening balance.

Support groups are full of people with good advice about such challenges, Janicke says. Occupational, physical and speech therapists are great sources of information, too, she says — which is good reason for care partners to accompany patients to therapy appointments.

For example, she says, some people with eating difficulties bring their own adaptive silverware that’s easier to use to restaurants (available at various retailers like especialneeds.com, amazon.com and walmart.com). Others order finger foods or other easier-to-eat options.

Another example: Dolhun says people struggling to hear and understand someone with Parkinson’s can often improve the situation just by turning off TVs, putting away phones and sitting and facing the person.

The future is uncertain – but you should plan for it

When the Rafaloffs moved to Florida from New Jersey, they switched from multistory to single-story living. They say they probably would have done that even if Gary didn’t have Parkinson’s — but he says it’s comforting to know he’ll be in a safer place if symptoms progress. The adage that we should “hope for the best, plan for the worst,” is true for all of us as we age but takes on added urgency when a loved one has Parkinson’s, Dolhun says.

In addition to considering housing options, planning means making sure your loved one has up-to-date legal documents — including those that name medical and financial decision-makers who can step in if needed.

Gil Kim says he and his wife are glad that they bought long-term care insurance, which will pay for things like in-home care and assisted living, before her diagnosis. Kim says he’s also met with a financial planner to make sure they’ll have enough money to give Gina excellent care well into the future.  

That frees them up, he says, to enjoy all the things they can still do together today.