‘... Then the diagnosis came’
Darien man stood by his wife to the end of her Alzheimer’s journey
DARIEN — There are moments in one’s life when its realized that things will never be the same, according to Darien native Dick Helstein.
“You realize going forward that time will forever be marked as ‘before this happened’ and ‘after this happened,’” he said.
For Helstein, that moment came at the “perfect” phase of his and his late wife’s life, having raised their four children, Tim, Annie, Maggie and Liz, in the idyllic setting of a Darien neighborhood.
“I had my wife, Sue, of 50 years. We had four kids who are happily married. A beautiful home. Ten
perfect grandchildren. We were planning the perfect next phase. Then the diagnosis came,” Helstein said.
Susan Helstein’s diagnosis of Alzheimer’s disease came “completely out of the blue.”
“It was nothing we expected. No family history. It was a punch in the gut, a journey you never plan for,” Dick Helstein said. “... Everyone knows a cancer survivor. No one knows an Alzheimer’s survivor.”
The Helsteins’ doctor recommended they call the Alzheimer’s Association for resources and support. The association also offers a 24-hour number for help. And on May 15, Dick will be honored by the Alzheimer’s Association of Connecticut at its virtual gala, Celebrating Hope, for sharing his story and raising money for research at the Walk to End Alzheimer’s.
Dick said the advice the couple initially got was to start planning in the early stages of the disease and agreeing on plans, which they spent a lot of time talking over.
But some of the best advice they got was, “You don’t have to stop your life for this. You have a number of good years to go,” he said.
“I encouraged Sue, with her strong spirit, she would not be defined by this disease,” Dick said. And she was not. Susan decided to pick up the violin again, she took up tap dancing, the couple took river cruises, she began to take German lessons to encourage her brain to remain active.
“Sue was excellent that way. We knew it was progressive, but we were going to live until it stopped us,” he said.
According to the Alzheimer’s Association, Alzheimer’s is a degenerative brain disease that is caused by complex brain changes following cell damage. The most common early symptom is trouble remembering new information because the disease typically impacts the part of the brain associated with learning first.
Symptoms continue to get more severe and include disorientation, confusion and behavior changes. Eventually, speaking, swallowing and walking become difficult. There is no way to prevent, cure or slow the disease.
Along the way, Dick began to get more involved in the Alzheimer’s Association.
“There’s no way to know how to handle every situation as a caregiver. You go one day at a time. That’s how it works,” he said.
While he sought resources for himself, he also began to try to help other caregivers. Dick said as the disease progresses, the caregiver’s life becomes more and more isolated.
“My world was reduced to just taking care of Sue. I wanted to help other caregivers. There are very few good moments. I wanted them to know they weren’t alone,” he said.
Dick wanted to make it clear that caring for his wife was “a privilege.”
“Sue had been a nurse. She left that to raise our four children. She did an incredible job with that. This was a privilege for me. I wanted to take care of her like she took care of our family,” he said.
Their four children, who grew up in Darien, were all very involved in that care.
“If there was music, my parents were on the dance floor . ... When they were together there was a spark that could be seen for miles away. Always holding hands, they had a magical relationship,” their son, Tim said.
Dick has continued to serve as an educator in both Connecticut and Florida for those caring for loved ones with Alzheimer’s disease.
One thing he emphasizes to them is to make sure they take care of their own health. Dick said he lost sight of that at times, as Alzheimer’s slowly took over Susan’s life.
“Your world narrows down to focus more and more on your wife, who is unfortunately disappearing an inch at a time. It takes so much out of you. It is so important for caretakers to guard their own health. At times, my kids thought they were going to lose both parents,” he said. Susan died a year ago. As his mourning process continues, one of the hardest parts for Dick is to try to “remember Sue as before, not after.”
“So much of that burns into your memory. The fun times take a while to come back,” he said.
The changing of scenery has also helped, and now that travel is opening back up, he’s been able to visit his children and grandchildren.
Helping other men who are going through his same journey has “been wonderfully healing for me,” Dick said.
Dick also serves on the board of CaringKind, a New York-based organization that is dedicated to Alzheimer’s and dementia caregiving. It offers resources, education and a 24-hour helpline.
Jim and Kate Clark of Greenwich will chair the Alzheimer’s Association event, and MLB former Yankee Mark Texeira will emcee.
The event raises money to serve the 80,000 people living with Alzheimer’s in Connecticut and their caregivers, and fund critical research toward a cure.
Dick said he honored to get the award but only will accept it on behalf of all the Alzheimer’s caregivers who have gone through the same journey.
“There are 200,000 caregivers out there. I’ll be glad to accept it so they know they aren’t forgotten,” he said. “... When your loved one is diagnosed with Alzheimer’s disease, only your true friends stay close. But no one really asks how the caregiver is — they ask how the patient is.”
Dick said the caregiver is often suffering just as much as the patient.
“I really honestly and truly want to use this to recognize that everyone of these people is showing hope, and courage and caring, along with heartbreak. There is nothing like it,” he said. “... I’m really pleased to get this award to highlight the role of caregivers. Every caregiver should get a courage and hope award.”