Caregiving for an early-onset patient

For Miami Herald.

On Roger Roessler’s first date with Rosie, his hand shook when he picked up the phone.

“You should probably watch that,” she joked. “It could be Parkinson’s.”

Five years later — after marriage, three kids and an accident that severed three of his fingers — Roessler does indeed have Parkinson’s disease, a neurological disorder that typically targets those 60 and older.

Roessler was 40.

Today, Rosie, 31, who works as a property manager, assists her husband, who can still drive and helps take care of their three children. But everyday tasks can take time to complete.

“I can fold a normal load of laundry in 10 minutes. It takes Roger 45,” said Rosie.

Rosie is one of a growing number of caretakers who are caring for people who have early onset progressive conditions like Parkinson’s and Alzheimer’s. They’re often balancing raising children and maintaining a job with caretaking, and can be caretakers for many years due to the patient’s relatively young age when they contracted the disease.

“For the younger people, it’s more complicated,” said Tony Friguls, co-founder and president of Baba’s Bunch, a nonprofit organization that provides assistance to those afflicted with Alzheimer’s. “We can think of our 50s as our prime years. This is when probably you’re still taking care of your children, you’re at your prime professionally. This is where you get close to start thinking of retirement.”

Caretakers, however, are more focused on getting through the day.

Rosie has to cut up Roger’s food and was surprised when one day, four months ago, it took more than an hour to get him out of the shower and dressed.

“That was a lot of tears and feelings,” she said. “Some things you can’t see because it’s a gradual progression, and others are like, ‘Wake up, this is what is really happening to you.’”

Every morning Roger wakes their children, Jensen, 14, Hunter, 8, and Cameron, 6. Rosie gets them ready. She leaves for work while Roger takes the children to school. He is also responsible for picking them up, but some days when his symptoms act up, Rosie steps in.

To help her cope, Rosie started a support group on Facebook, posting her experiences and gaining insight from others. She also works closely with the Miami-based National Parkinson Foundation to spread awareness to young caretakers.

But not all caregivers are young.

Joseph Pinkston, 82, of Miami Lakes, is the main caregiver for his son, Joseph Pinkston Jr., 55, who was diagnosed with dementia in 2008. When Pinkston Jr. was diagnosed, he lost his ability to do the job he held for 12 years as a deputy clerk for the U.S. District Court. Today, he can’t say a word and has even wandered away, ending up at Palmetto General Hospital one night.

“He’s helpless,” said the father, who takes his son to an adult day-care center during the week so he can run errands, go to doctor appointments and pick up Pinkston Jr.’s three children from school, who are 14, 12 and 10.

“You can’t relax for even one minute. He’s got the mentally of a 2-year-old,” he said.

Dr. Ranjan Duara, medical director at Mount Sinai Wien Center for Alzheimer’s Disease and Memory Disorders, believes the most important factor for helping young onset patients and their caretakers is to recognize and acknowledge the stigma associated with the disease.

“A lot of people just sort of accept the stigma and try to hide,” Duara said. “That isn’t a healthy approach to the problem at all.”

Duara recommends dealing with the depression that is often common among younger patients.

“It needs to be recognized and treated with medications and psychological support, sometimes as a combination,” said Duara, who advises planning for the future, legally and financially.

One of the most important factors is finding a strong support system.

Consider Ivon Bertan, 53, who has been a caregiver for 20 years to her husband Abe, 53, who has Parkinson’s. As his Parkinson’s progressed, Ivon had to cut back on her job as a real estate agent.

“I had to become much better with time management,” she said.

For the past eight years, the couple has gone to support groups at Baptist Medical Arts Building in Kendall, where they can talk about their experiences, fears and hopes.

“We’ve found that is a successful formula for us and the people in the group,” said Abe.

Doctors and others who specialize in these conditions say support groups are key to managing the condition and the emotional toll it takes on the patient, the caregiver and the extended family.

“The devastating effects on the family are often overlooked. It’s important for the caregiver to have social support,” said Dr. Brad Herskowitz, a neurologist at the Baptist Health Neuroscience Center. “It can be physically and emotionally exhausting, especially as the disease progresses.”

RESOURCES

For more information on the National Parkinson Foundation, visit parkinson.org.

For more information on Baba’s Bunch, visit babasbunch.org.

Support Group Meetings

What: Baptist Health — Parkinson’s Disease Support Group

Where: Baptist Medical Arts Building, Health Resource Center, 8950 N. Kendall Dr., Suite 105, Kendall.

When: English-speaking groups meet 7-8 p.m. on the second Friday of the month; Spanish-speaking groups meet noon-2 p.m. on the third Saturday of the month.

Info: Call 786-596-2800 or visit baptisthealth.net.

What: Mount Sinai Wien Center Support Groups (English) for Alzheimer’s Disease and Other Memory Disorders

Where: Mount Sinai Medical Center — Wien Center for Alzheimer’s, 4300 Alton Rd., Miami Beach.

When: 12:30-2 p.m. on fourth Wednesday of the month.

Info: For Spanish-speaking groups or groups that meet in Aventura or Coral Cables, call 305-674-2121 or visit msmc.com.

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