Life is bittersweet for Steve Snater. He is living with his parents so that he can be a caregiver for his father, who has Parkinson’s disease (PD). “It sucks in every way,” said Steve. “But it is wonderful that I can be there for him.
“I had the most wonderful parents,” he said. “I am an only child. My parents are my number-one role models and I wanted to be just like them. I played a lot of sports growing up, and my dad was at every practice and game. He even drove from Minneapolis down to South Dakota to see my college football games. Things have changed since then. My parents are still wonderful, but today my father has PD and my mother and I are his caregivers.”
Steve moved to California after college. On one of his parents’ visits in 2004, the family went to see the Queen Mary at its berth in Long Beach. “I could see that something was wrong. My dad was slow, often lagging behind. Two days after my parents got home, they called and told me my father had been diagnosed with PD. Since then he has also had two strokes.
As time went on, Steve could hear more and more weariness and frustration in his mother’s voice during those calls home. He vowed to move back to Minneapolis as soon as he could, and in 2007 he did. It was soon clear to him that his parents would need a lot of help. “PD takes a toll on the whole family,” Steve said. “Obviously many things have been taken away from my father. He needs help with shaving and getting dressed. He has lost a lot of weight and falls often. Dementia has set in so he has a hard time remembering things, and he can no longer get on the computer to get something done. My mother has a hard time taking care of a 200-pound man when he falls or needs help moving. Some days she’s so tired that she doesn’t want to get out of bed.”
Given the toll the disease was taking on both his parents, Steve decided to move in with them in 2010. “I hadn’t lived with them since I was 18,” he said. “Deciding, at 33, to move in like that – well, it’s been hard. There are some real personal challenges. Going out on dates and having a relationship with someone is tricky. How do I explain why I live with my parents? When do I tell my date about my father? It’s hard on the ego. It’s also hard to find time to do anything with friends, let alone go out on a date. Some days I have no energy. I have never been a negative person. But sometimes I have to make an effort to see the positive side of things.
“I do have a close group of friends, some of whom have lost their parents. One friend helped take care of his father, who had cancer. He understands what I’m going through. All of them are very supportive; I lean on them when I’m down.”
Steve tries to stay active. He played rugby for a couple of years with the Eastside Banshee club in Eagan, Minnesota – “but it’s a young person’s game,” he said. “I love to golf and try to get out several times per week. Actually, that’s how I became involved with the National Parkinson Foundation Minnesota (NPFM). I was trying to think how I could help raise money for PD and came up with the idea of organizing a golf tournament. I contacted Luther Amundson and Paul Blom of the NPFM and found out that they have an annual golf tournament to raise money for caregivers’ respite care. I’ve been helping out with that tournament for a year and a half, raising funds through corporate sponsorships from my business contacts. I’m also trying to do more by being on the NPFM board.
“Being involved with NPFM is a great thing. It’s self-healing for me. I meet people dealing with the same issues as my family and I don’t feel like I am the only one in this situation. Seeing others at the golf tournament is an emotional relief.
“Right now life is bittersweet for me,” said Steve. “There are some good things and there are some hard things. But I can’t think of a place I’d rather be.”
Story written by Susan Gangsei, author of The Light in the Middle of the Tunnel: Harrowing but Hopeful Stories of Parkinson’s Family Caregivers and Stuck With It, Not In It: Redefining Life with Parkinson’s Disease.
The fear can no longer be tucked away after a certain point. These questions and more present themselves when you notice what the disease is doing to your loved one on a daily basis.
The Story of the Kissell/Green Family
Ashley and Justin Remus live in New Ulm, Minnesota, a farming community about 100 miles southwest of Minneapolis. They’re keenly aware of the lack of information and awareness about Parkinson’s disease (PD) in small towns and rural areas. In fact, they lived this lack when Justin’s grandfather was diagnosed with Lewy Body, a variation of PD, in 2007 and passed away in 2011. “It took three to four years for my grandfather to be properly diagnosed,” Justin said.