Tips for Caregivers
- “90 Day Fiancé” star Deavan Clegg is the full-time caregiver for her 4-year-old son, Taeyang, with cancer.
- Thankfully, she’s learning to take care of herself at the same time, too.
- A GoFundMe set up for Taeyang and his family to help cover medical bills has raised over $41,000.
- Though many people turn to various crowdfunding methods to pay for medical expenses, it’s important to remember there are other, potentially better, options for you to explore.
- Experts say getting a social worker/patient navigator and an advocate within the medical field can be an immense help.
- Some states offer compensation for caregivers who need to stop working to help a loved one. Moreover, many programs are available to people who are struggling financially due to cancer treatment.
Clegg has 4-year-old son Taeyang with her reality star ex Jihoon Lee, 28, who she appeared with on “90 Day Fiance: The Other Way.” Taeyang was diagnosed with B-cell acute lymphoblastic leukemia just a month after his third birthday.
Read MoreView this post on InstagramAcute lymphoblastic leukemia, or ALL, is a very aggressive type of leukemia where the bone marrow makes too many immature lymphocytes, a type of white blood cell. It is also called acute lymphocytic leukemia.
Since her son’s diagnosis, the mother of three has had to stop working to become Taeyang’s full-time caregiver.
“Childhood cancer is devastating emotionally and sadly takes its toll on every aspect of life,” the GoFundMe set up for Taeyang and his family reads.
“Taeyang will need round-the-clock care in both the hospital and when he can return home to his family.
“Because of his age and childhood leukemia, his mother will have to be his full-time caregiver and not just his loving mom. For these reasons, she will not be able to continue her line of work. … It is estimated that every year of Leukemia treatment is $100,000 plus dollars, and places a financial hardship on most families.”
Watching her son fight for his life has likely been nothing short of heartbreaking, but Clegg holds on to hope that her son will defeat the disease.
Just the other day, she shared a beautiful video dedicated to Taeyang for his fourth birthday.
View this post on Instagram
“When Taeyang was diagnosed a month after his 3rd birthday I was terrified that was the last birthday I'd be spending with him,” she wrote in her heartfelt caption.
“This birthday is so extra special. I know we will make it through and beat cancer. I love you Taeyang. Thank you everyone for supporting us and donating. You guys have made this journey easier. Thank you for being here and following Taeyang's journey the past four years. #cancerawareness #90dayfiance #90dayfiancetheotherway.”
Deavan Clegg Takes Much-Needed Time for Herself
Deavan Clegg has understandably been consumed by her son’s health battle, but, thankfully, she’s trying to make sure she takes care of herself, too.
View this post on Instagram
“I haven't posted a photo of myself in a long time,” she captioned a series of photos earlier this week. “When Taeyang was diagnosed I stopped caring for myself and well being. I'm trying to change that one step at a time.”
One of our experts says caregiving is “the most important job in the universe” and is crucial. But to be the best caregiver, you can’t forget about your own well-being.
RELATED: Patrick Dempsey's Advice to Cancer Caregivers: Take Care of Yourself, Too
"It is important to have some things that you can do outside of the focus of caring for somebody that you love with cancer," Julie Bulger, manager of patient and family-centered care at Vanderbilt-Ingram Cancer Center in Nashville, Tennessee, tells SurvivorNet.
Paying for Cancer as a Caregiver
As Deavan Clegg’s story shows, the cost of cancer treatment can be cruel. Some turn to various crowdfunding methods with online platforms such as GoFundMe, but it’s important to know that crowdfunding can be a tough way to raise funds.
Where Cancer Caregivers Can Get Help With Finances: Coping With the Bills
According to one study conducted by researchers at the University of California San Francisco, GoFundMe efforts for medical bills often fall short. The study found that the median fund-raising goal for patients on their GoFundMe pages is $10,000, but the median donations obtained were less than a quarter of the goal at $2,125.
There are some people who find great success with crowdfunding, but the success stories can be few and far between.
But know there are options when bills start to pile up for you or a loved one. And a social worker or patient navigator like Sarah Stapleton might be just what you need to figure out what your best plan of action is.
Clinical social worker Sarah Stapleton explains how she helps patients navigate treatment.
"It's super important to see a social worker," Stapleton, a clinical social worker at Montefiore Medical Center, told SurvivorNet.
"I think there's a networking that they can assist you with and they really have the strongest knowledge of the resources available to get you through the process … with social work, one of the primary roles is advocacy.
“It's meeting the patient and understanding the patient's needs and understanding what it is you need in this very moment, whether that be financial resources, whether it be related to your insurance, transportation, or, ultimately, the emotional process of getting through cancer treatment.”
In addition, Dr. Allyson Ocean, a medical oncologist at Weill Cornell Medical Center, recommends finding an advocate within the medical field when dealing with costly medical bills.
She often has to call insurance companies to help her patients get the treatment they need covered by insurance.
Paying for Cancer: Find Someone Who Will Advocate For You
"My best advice to work around the system of whether or not drugs or tests can be covered for cancer is to make sure you have an advocate in your field working for you," Dr. Ocean says.
"The frustrating part for me is that sometimes we even have to educate the insurance companies and say, 'There's a reason why I want to use this medicine.'"
Overall, having advocates and knowing your options is key. Some states offer compensation for caregivers who need to stop working to help a loved one.
Moreover, many programs are available to people who are struggling financially due to cancer treatment.
Below are a few avenues cancer patients and their caregivers can take to get help covering costs associated with treatment:
Covering Caregiver Costs
- Some states offer compensation to cancer caregivers. You can check with the Department of Health and Human Services for local resources.
- CancerCare offers free services to caregivers as well, and their oncology social workers may be able to connect struggling caregivers with mental health professionals, support groups, and other resources.
For Help With Treatment Bills
- The Cancer Financial Assistance Coalition can direct patients and their families to available local services.
- Many treatment centers offer extended payment plans and some may offer temporary payment delays, according to the American Cancer Society.
- CancerCare, which connects patients with oncology social workers, may be able to assist with co-pays, transportation, and other costs associated with care.
- The HealthWell Foundation may be able to help uninsured patients pay for treatment.
- The American Cancer Society may be able to link patients and their families up with local resources (they offer a 24/7 helpline).
- The Patient Advocate Foundation (PAF) works with patients and their insurance companies to resolve issues and may provide direct financial support to some patients.
- The Patient Access Network Foundation may be able to help with out-of-pocket costs associated with cancer treatment.
- The Lazarex Cancer Foundation has programs to help patients cover costs associated with clinical trials.
For Help With Transportation and/or Housing
- There are several programs that may be able to assist patients if they need to travel by plane to get treatment, including Air Care Alliance, the Corporate Angel Network, and PALS (Patient Airlift Services).
- Patients with Medicaid may be entitled to help paying for transportation costs to and from treatment.
- The American Cancer Society's Road to Recovery program can hook patients and their families up with volunteer drivers.
- Mercy Medical Angels may be able to help patients and their families pay for transportation.
- The Healthcare Hospitality Network can assist with housing if a patient must be treated far from home.
- The American Cancer Society Hope Lodge Program gives patients and their caregivers a free place to stay during treatment in dozens of cities across the U.S. and Puerto Rico.
For Help With Food
- Food assistance may be available to people going through cancer treatment and their caregivers. Look into the Supplemental Nutrition Assistance Program aka SNAP or a program like Meals on Wheels.
Contributing: Laura Gesualdi-Gilmore
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