By Sue Wambolt, Contributing Writer
Westborough – In 2004, at the age of 50, Robbi Rubenstein's husband, Dave, was diagnosed with incurable systemic scleroderma and interstitial lung disease.
The diagnosis came at a time when the Rubensteins” children were becoming adults and Robbi and her husband were both enjoying successful careers. The Westborough couple had been looking forward to spending more time together and doing some traveling, but the disease hit, and their lives were turned upside down.
Desperate for a guideline on how to live with a terminally ill spouse, Robbi turned to the Internet. She Googled everything she could find on caregivers, illness and “how to keep strong,” ultimately stumbling upon the Well Spouse Association (WSA). When she went to the website, Rubenstein found just what she was looking for.
“At the top of the site,” she said, “was a tab titled “RESPITE.” The word jumped out at me because it sure was something I felt I needed. I clicked on it. In two weeks, there would be a planned trip for Well Spouses in Maryland to stay at a B&B, enjoy dinner, sailing, hiking and kayaking. It sounded like a dream.” And it was.
Robbi joined the WSA in July 2008. At the group's Atlanta convention in October 2011, she was asked to be on the national board. Then, following a respite trip in January in 2011, she was inspired to start a group in central Massachusetts. Being away with people who “got it” made her realize that she had been living on autopilot. She wanted to come home and help others who were experiencing the same struggles, fears and questions as she was. The first meeting of the Central Mass Chapter of the WSA took place May 9.
Robbi is the group facilitator for the Central MA Well Spouse Group, which meets the second Monday of the month at Temple B'sai Shalom in Westborough. Confidential meetings are attended by about 15 people, but she said that unfortunately the numbers are growing fast. During their time together, members help and support one another.
Those who attend live with spouses who suffer with anything from chronic migraines to end-of-life situations. Living with an ill spouse redefines marriage and presents new guidelines that one learns to embrace. It gives true meaning to “in sickness and in health.” According to Robbi, attendees leave each meeting with a little more strength than they came in with and the tools necessary to make the daily roller-coaster ride just a little less frightening.
“There are no predictions as to what's to come,” Robbi said, “just present moment support and care. When you live with an ill spouse and you come into a meeting, you have a feeling of belonging. You know that someone else “gets it.””
Robbi knows first-hand the challenges that come with caring for an ill spouse. The biggest fear, she said, is losing your loved one and being alone. Finances are another fear as living with an ill spouse is expensive. From medical equipment and nursing homes to aides, special foods and medication to doctors, the list of expenses is extensive.
“Always looming is the “unknown,”” Robbi said, “and the unknown can drive you nuts.”
As group facilitator, Robbi has invited professionals from the medical and financial fields as well as lawyers and social workers to offer advice and services to the members. In September, she had an attorney attend and speak.
“Her information was invaluable. She discussed elderly care with us. Even though we'se not elderly, many of the same rules apply,” Robbi said.
On Oct. 18, Robbi, a realtor with RE/MAX Prestige in Northborough, was recognized for her community service and activism with the Massachusetts Association of Realtors (MAR) 2011 Good Neighbor Award.
“To be a good neighbor,” said MAR President Laurie Cadigan, “means that you have committed not only money but also time, sweat and some tears to help others in need.”
Today, Dave's health continues to deteriorate. He has less than half his lung capacity and is on oxygen 24/7. He has lived longer than was expected and for that, both he and Robbi are very thankful.
As a well spouse, a mother and a successful realtor, Robbi has a lot on her plate. Despite the roller-coaster ride that is her life, she has learned to appreciate the little things.
“There are blessings in everything and in every moment,” she said, “and I am grateful for every moment in the past seven years. It has taught me to be a better spouse, friend, mom, businesswoman and leader. Everyone wins when we are there for each other.”
