For the last 18 years, 93-year-old Joe Siracusa has continued to perform two roles he loves: the first as a dance instructor and harmonica player at his local Southern California senior center, and the second as a primary caregiver to his 63-year-old son.
A member of “The Greatest Generation,” Siracusa joined the U.S. Army during World War II but instead of using a rifle, he used his cherished drumsticks to entertain troops as an enlisted man playing with the Glenn Miller Band at Fort Bliss, Texas. His love of music came naturally. His father had been a tuba player in the Buffalo Bill’s Wild West Show in 1905 and his grandfather also played tuba in a local band in his native Sicily.
After the war, Siracusa starred on the drums with the traveling Spike Jones band, but left for a more family-oriented career as a California-based musical director and animation editor while raising four children with his wife, Eleanor. His love for music was evident in his work on popular 1950s, 1960s and 1970s animated cartoons such as Mister Magoo, Road Runner, Popeye and one of his favorites, The Pink Panther, where he collaborated with music maestro Henry Mancini.
When Everything Changed
Life was beautiful until one day in 1989 when Siracusa received a phone call that his then-37-year-old son, Jim, had been in an horrific auto accident. Jim, whose wife was killed in the crash, suffered traumatic brain injury (TBI) and had surgery to remove part of his brain. Siracusa and Eleanor moved Jim — who had also been a musician, a film editor and a local pastor — into their home, since he was unable to walk or perform simple activities of daily living.
The Siracusas were an around-the-clock caregiving team for their injured son until 1997 when Joe lost his wife to a stroke. For the last 18 years, Joe has been Jim’s sole caregiver. “He can’t walk but he can hug and kiss and say ‘Thank you,’ ‘I love you,’ and ‘Amen,’”said Siracusa. “It’s not a chore, but a responsibility, and I thank God I’ve had the strength, energy, patience and the wisdom through God to care for him all these years.”
Older Parents and Special Needs Children
Most caregiving scenarios are of adult children caring for aging parents. However, today’s longevity can create a different type of caregiver — a much older parent caring for an aging child with special needs, ranging in situations such as developmental and intellectual issues including autism or Down Syndrome to incidents related to TBI (Traumatic Brain Injury).
According to the 2015 report from the National Alliance for Caregiving and the AARP Public Policy Institute, 3 million adults over age 75 are providing care to a family member or friend. While more than half of these are caring for a spouse, the others are caring for even older parents, a sibling, a friend or an adult child.
He can’t walk but he can hug and kiss and say ‘Thank you,’ ‘I love you,’ and ‘Amen.'
— Joe Siracusa, about his son
And while women still represent the majority of primary caregivers, AARP reports that 14.5 million men (about one out of every three caregivers for loved ones over 50) are primary caregivers.
Brain Injuries Common
TBI is often in the news due to sports injuries or the wounds of war, but the National Institute of Neurological Disorders and Stroke (NINDS) says that falls account for more than half of TBI situations, followed by blunt trauma and automobile collisions. The Centers for Disease Control (CDC) reports that up to 5.3 million Americans are living with the long-term effects of a TBI-related disability, while BrainLine, a service of PBS WETA in Washington, D.C., that provides resources and information on TBI, says 1.7 million Americans suffer from mild or severe TBI.
Approximately 125,000 of TBI patients are permanently disabled like Jim Siracusa, requiring full-time care. Many of these patients are being helped at home by family caregivers. However, TBI sufferers can experience other health issues as they age, complicating home care responsibilities for their family caregivers. Dr. Steven Flanagan, chairman of the Department of Rehabilitation Medicine at New York University School of Medicine, told BrainLine that as adults with TBI grow older they have a greater risk of seizures and even developing symptoms of Parkinson’s disease or dementia.
While the Family Caregiver Alliance says someTBI caregivers experience feelings of burden, distress, anxiety, anger or depression, Joe Siracusa is the anomaly. He seems to exhibit none of these emotions.
What Keeps Him Going
Siracusa says he is buoyed by a foundation in faith through his weekly Bible study meetings at his home and attending church on Sundays. He also has the aid of the Motion Picture & Television Fund (MPTF), an organization that provides a safety net of long-term care and other programs for those who have worked in the TV and film industries. MPTF helped find a health care professional for Jim so Siracusa could attend his senior center dance sessions twice a week. It also helped modify Siracusa’s home to accommodate Jim’s disabilities.
If there is one word to express Siracusa’s outlook it would be gratitude. He is grateful he was married to his high school sweetheart for 56 years, grateful for a beautiful family and a fulfilling career in music and grateful for those who support him so he can be a caregiver to his son.
“Since my wife passed away, I’ve had this one solitary situation to take care of my son and thank God I’m still able to do it,” he said.
Watch actor Tobey Maguire tell Joe’s Story as Joe Siracusa dances with Kym Johnson of Dancing with the Stars.