Elvis Gardin likens being a caregiver to a loved one with dementia or Alzheimer’s disease to being alone on an island. “When a family member is diagnosed, those who assume their care enter uncharted territory with few people they can relate to,” says the Highland Park resident, who has been caring for his 88-year-old mother, Dilcie, in his home for the past year.
He decided to remove his mother, who has Alzheimer’s disease, from the assisted living facility where she resided for three years, after noticing a sharp decline in her physical and mental states. “My mom has always been a lively person – highly social and witty – but her spirit was slipping away,” he says. “It was something beyond the disease. She dropped a considerable amount of weight in a short time and started to isolate herself from the group. I knew she would have a more fulfilled life with me.”
A chef and wellness coach by profession, Gardin focused on nutrition and engaging her mind. Today, he reports, his mother has regained her vitality, usually joining him when he addresses Rutgers University medical students or the general public about caregiving. Despite his success, caregiving has been a lonely journey for Gardin, who has few family members who can help and no friends who understand the unique challenges he faces.
That changed when he spoke to Barbara Surina, a peer support counselor at Care2Caregivers (800-424-2494), a recently created helpline for caregivers to people with dementia and Alzheimer’s disease, operated by Rutgers University Behavioral Health Care. “We just really connected,” he says. “As soon as I began to tell Barbara my story, it was magic and sparks. She got it.”
Surina understands what Gardin is going through because she’s been there, too: For more than a decade, she served as a caregiver for her mother, who had cancer, and her father, who had dementia. After they both passed away, she channeled her experience into a career working with people suffering from dementia. “Caregiving is an exhausting, overwhelming, 24/7 responsibility,” she says. “I know the toll it can take and how vital support is.”
Care2Caregivers – funded by New Jersey’s Department of Human Services through the Comprehensive Services on Aging Institute for Alzheimer’s Disease and Related Disorders (COPSA) at UBHC – has made approximately 8,000 contacts since it launched in August 2014.
“Caregivers don’t know what they’re getting into when their loved ones are diagnosed,” says program coordinator Mary Catherine Lundquist. Often, she says, the person could be living with the disease for years before the family realizes something is wrong. The family reaches out to get help but they don’t know what they need. The helpline assists callers in all stages: from pre-diagnosis and caregiving to hospice and bereavement when a loved one passes away.
Like Surina, the peer counselors who answer the helpline have been caregivers to loved ones and have worked professionally with dementia patients. This unique skill set allows them to understand the callers’ concerns and be familiar with services that can help. “Many callers are looking for someone to just tell them that, yes, they are doing a good job,” she says. “But sometimes, they are so stressed they don’t even know why they are calling. They just need an outlet.”
Peer counselors advise on issues such as how to manage difficult behavior, develop smoother daily routines and navigate the maze of community resources. “There’s no training for a family member whose loved one with dementia gets into the car and drives, hallucinates or shadows them all day long,” Lundquist says. “It’s essential for them to be educated, but there are few places where they can turn to learn more. This is where the helpline comes in.”
Calls to Care2Caregivers are confidential and can be anonymous. Counselors make follow-up calls to check in. The helpline counselors operate Monday through Friday from 8:30 a.m. to 4:30 p.m., with plans in the works to expand those hours. Beyond 4:30 p.m., caregivers can send emails via the website that counselors will answer the following day. Caregivers can also correspond with counselors via live chat on the website and receive news on the Care2Caregivers Facebook page.
Care2Caregivers also offers a variety of support groups through the COPSA Institute, including “Just for the Fellas” for male caregivers and “Young Wives” for women in their 40s to 60s who are caring for spouses. An online live chat support group is planned for early 2015.
The options for support are a relief for caregivers such as Gardin, who can’t predict what their daily schedules may be. “Talking – whether in person, on the phone or online – makes such a huge difference in our mental state,” he says. “When we are at wits’ end, it’s a relief to know that we can have a conversation with someone who has walked that very same road we are on.”
For more information, contact Patti Verbanas at 848-932-0551 or firstname.lastname@example.org