Sami Peterson is like most of the family caregivers I've had the privilege of meeting over the years -- hard working, resourceful, optimistic and exhausted. As the winner of the 2011 National Family Caregiver of the Year award, which was announced on Monday, Peterson, 50, is different from most caregivers in that she is caring for two people while maintaining a full time career.
Peterson provides in-home care for her husband, Rob, 66, who has Huntington's disease, as well as her developmentally disabled son, Will, who is 17. Huntington's disease is a genetic disorder that affects muscle coordination and ultimately leads to cognitive decline and dementia. Rob, whose mother also had Huntington's, is currently experiencing the full range of Huntington's symptoms, including dementia.
How Sami handles raising a developmentally-challenged son amidst her husband's circumstances is beyond most people's comprehension.
"Sami is amazing," says her sister, Becci McCormack, who helped nominate Sami for the award. "She has had to fight the systems of education, health care, insurance and employment to provide an affordable and viable situation for her family. And in doing so, she has tapped into resources others didn't even know existed."
In her hometown of Fort Collins, Colo., which is about an hour's drive north from Denver, Sami is active in a Huntington's Disease Support Group of Northern Colorado, which meets each week. She says that her quest to help her husband and son live better lives has been a challenge, especially with regard to the relatively unknown Huntington's disease.
Huntington's disease is tragic. Those inflicted with the disease typically live about 15 years after diagnosis, slowly losing touch with their physical and mental well being along the way. Rob's mother eventually committed suicide at her nursing home, unable to deal with the mental issues generated by the disease. With Huntington's disease having such a strong genetic connection, Rob had worried he would get it too, and prior to meeting Sami had planned financially and legally, just in case.
Sami and Rob were married in 1984 and after about five good years they started having uncharacteristic, irrational fights. Unbeknownst to Sami, at the time, they were working through the early stages of Rob's Huntington's disease. He was officially diagnosed at the age of 44.
"Losing him slowly has been a difficult journey," says Sami. "Sometimes now, during a gathering or conversation, Rob, the old Rob, will pop in and be totally present."
It's those moments and breakthrough moments with her son Will that Sami says push her to continue providing difficult, exhausting care with such a cheery disposition, whether with friends and family, or at work. As a caregiver myself, having cared for my husband for more than 25 years, I can understand the power of those moments when the hard work is returned with genuine love and respect. In spite of the over-reported negative effects of caregiving, there is a positive return in caring for a loved one. In fact, Paula Span at the New York Times recently wrote a column that focused on recent studies pointing to the physical benefits of caregiving, entitled "Caregiving's Hidden Benefits."
"Caring for Will and Rob has provided me with many life-enriching opportunities and has really touched those around me," Sami says. "While it has not always been easy, caring for my boys has truly enriched my life."
Participating in the judging process for the National Family Caregiver of the Year award was special, and I appreciate being asked to serve as both a panelist and co-sponsor of the award by Homewatch CareGivers. During the process, I had the opportunity to review some very compelling family caregiving stories, some that simply broke my heart to read, and then some, like Sami's, that were inspirational and left me feeling motivated. I think I speak for my fellow panelists when I say we made the right decision in selecting Sami Peterson.