Robert Gardner is living with Parkinson’s Disease. His sister Susan Stocker is his caregiver.
For the last 30 years, he was able to live on his own in Asheville, North Carolina. Then Hurricane Helene hit.
“I started to get some phone calls from friends and neighbors that Robert wasn’t doing well. There was no power. There was no running water. My husband Mike and I decided let’s go. We dropped everything. We loaded up the car with hundreds of dollars of supplies and food and we drove 12 straight hours to Asheville,” Stocker said.
After one night, they realized that Robert could not live alone. He was falling, making life dangerous and was off his medication schedule.
“Physically it was getting more and more difficult to be living alone. You know friends are friends and you can only ask them to pick you up off the floor so many times and so there was that inclination to get closer to family,” Robert Stocker said.
Caring for brother was 24/7 job
So they packed him up and moved him to Hollywood, where Susan’s life was about to radically change.
“This caregiving is no joke. It’s like a sweet phrase to be a caregiver, but it’s exhausting, it’s frustrating,” she said.
One night stands out for her, one she wished she could have a “do-over.”.
“I heard Robert calling out for help and I didn’t want to bother my husband because he had to get up early for work the next day. I walked into Robert’s room and he was on the floor,” she recalled.
She tried getting him up on her own.
“I was not patient with him, regretfully, you know, it was, it was not a good moment. I was, I was losing it. Usually I’m very gentle when picking him up. I was not gentle that night and I was furious with myself. I had to, I had to stop. I had to go into another room and I had to calm down. I had to calm myself down,” she said.
But there’s a reason she does this.
“It’s definitely about love and it’s about letting go of your ego. You know, they say, that in the word family, you have to remove the letter I and think of others, not yourself,” she said.
Making a big move took time, research
After five months of living with his sister and brother-in-law, Gardner has moved into an assisted living facility, but it took a lot to get to that point.
“So when I first went into helping my brother out, you know, I was all gung ho and you know, ‘I’m gonna do this and I’m gonna find you the right doctors and I’m gonna find you the right programs to be in” That didn’t last very long when you really get into the thick of it, and it’s 24/7 for weeks and then months at a time,” Susan Stocker said.
After months of research and applications, she got her brother approved for Medicaid.
“It doesn’t happen overnight. A lot of time on the phone, a lot of time online, a lot of research and he just got approved about two weeks ago. I started putting those applications in back in October. It’s pretty daunting,” Stocker said.
That opened up some funding for an assisted living facility. Stocker began looking. It wasn’t easy but she found a place they both liked, but it’s not living with family.
“Other parts, you know, in other places in the world, I mean, you just take care of grandma, you know, you don’t just dump her in a home,” Gardner said.
“Do you feel like I’m dumping you? Because I worry about that,” Susan asked her brother.
“No, not at all. No, I, I’m looking forward to being dumped,” he said with a grin.
“See what I mean,” Susan said with a laugh. “He’s the optimist.”
She said it was tough leaving him.
“When I got in the car to leave, I just, I lost it. I was bawling my eyes out. It felt exactly like how it felt when I dropped my kids off at kindergarten and you’re just running through your mind, like ‘is he gonna be okay’?” Susan said.
Even though Gardner is not living with his sister anymore, that doesn’t stop her from worrying.
“I worry about getting his meds on time,” she said. “I worry about the people who work at the ALF and if they’re being nice to him, if they’re treating him well.”
— Please join us Saturday night at 7:30 for our special, “Living with Parkinson’s: Caring for the Caregivers.”
