ORLANDO, Fla. – When you’re 31, you’re supposed to be looking forward to your life with your significant other.
Cancer had other plans for Amanda Clark-Wahl.
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Amanda’s husband, Joe, was diagnosed with colon cancer two months before they got married.
He would battle the disease for two years before he died in 2014, and Amanda was by his side every step of the way as his caregiver.
“For me, when I was caring for my husband, he died when I was 31, and he was 30, and I didn’t know anyone who had gone through this, and I was so alone,” said Amanda.
[RELATED: How to get mental health help in Central Florida]
To help her get through it, she started to blog about their journey, caring for Joe, getting pregnant and bearing their child, and Joe’s death.
Cocktails and Chemo became an outlet for Amanda’s feelings, but it also became a rally-point for people like her – caregivers who give everything to the person needing care to the point where they stop caring about themselves the way they should, both emotionally and physically.
“So the blog kind of transitioned into a home base for our nonprofit (now Cocktails and Caregivers), and it’s sort of grown into this community of people needing to be seen,” Amanda said.
The National Alliance on Caregiving and AARP found 53 million family members acted as caregivers in the U.S. in 2020 – that’s more than 1 in 5 Americans.
Of those, 23% report caregiving has made their health worse.
Dr. Marni Stahlman at the Mental Health Association of Central Florida says making the person needing care a priority puts the caregiver at a disadvantage.
“It’s not uncommon for the caregiver to sublimate their own needs,” Stahlman said.
She likens it to the procedures on an airplane when it’s in an emergency situation — the oxygen bags drop down, and the directions say you’re supposed to put that mask on before helping someone else.
“It doesn’t occur to them that they put that oxygen mask on first because their priority is the person in need,” Stahlman said.
There are resources to help caregivers care for their loved ones, but finding them can be challenging, especially when you don’t know where to look.
In Central Florida, finding that care is not easy, Stahlman said.
“It’s siloed, it’s disjointed, it’s confusing,” Stahlman said. “And I think one of the best ways is Help Finder or the Council on Aging or the association of the illness you’re working with.”
Stahlman said part of the problem is the stigma around mental health. She says it’s so often associated with illness and not just mental health and wellness that it makes it difficult for people to come forward or find resources.
Help Finder is a website that helps people find services for a wide array of needs. People can search by zip code and category to find things like centers that care for people who need care during the day, transportation services and mental health care.
Aging and Disability Resource Centers are assigned regions throughout Florida and coordinate services. They provide information and referrals not only for older adults, but also for adults 18 and older with mental health conditions such as bipolar disorder or clinical depression.
You can also check out the organizations that are members of the Florida Council on Aging for help. A list of those groups is available by location HERE.
Then there are groups based on illnesses, i.e. Alzheimer’s, cerebral palsy, cancer and others. These groups may have services that can help caregivers, as well.
The Alzheimer’s and Dementia Resource Center in Winter Park has support groups and other programs for caregivers.
In The Villages, there is a tri-county resource center for caregivers.
Services you might find can range from transportation to Meals on Wheels to even at-home help.
Caregivers can also seek out help in the virtual realm, something that has grown in popularity with the pandemic. Stahlman says the benefit to that is you can join a group that convenes anywhere in the world.
Amanda Clark-Wahl’s blog became a nonprofit called “Cocktails and Caregivers.”
The nonprofit offers help in several ways:
People can nominate a caregiver to get a care package from the group with cards and other goodies, to let them know you care.
“We sent 21 care packages last month, we’ve sent as many as 50 in a month,” Amanda said. “We give a grant away every month to a caregiver to who needs help paying for childcare, or to give some backup.”
Cocktails and Caregivers also has virtual care groups, as well as virtual and in-person events. The site also has a list of vetted caregiver services.
“We just want to give them tools to help them realize one, they can’t do this by themselves, and two you are not alone,” Amanda said.
On the mental health side, Stahlman said you can reach out to the Mental Health Association of Central Florida to find support groups or other help.
You can also reach out to the Central Florida chapters of the National Association on Mental Illness, which offers support groups, both virtual and in-person, as well as resources.
- NAMI Greater Orlando: Orange, Osceola and Seminole counties
You can also find a list of resources on the National Alliance for Caregiving website, as does AARP.