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Tips for managing the financial cost of caregiving

BY ELIZABETH WHITTINGTON | JUNE 24, 2009

In Hard Times, caregivers learn the cost of cancer caregiving can be both expensive and surprising. Not only do caregivers and patients deal with lost wages, co-pays, and deductibles, but also the hidden costs, such as travel expenses, support services, and special meals, in addition to time spent on researching, coordinating appointments, and endless hours on the phone with insurance companies. Caregivers who don't live with the patient must also factor in time away from work or their own family, possible travel and lodging expenses, and paid help when they are away from the patient.

Here are a few financial tips to get caregivers over the hump:

1. Set up a free website, such as CaringBridge, Lotsa Helping Hands, Share The Care, and the Patient/Partner Project, for your support team (and have them invite their friends and family who can help!) to let them know when you need help with child care, transportation, meals, errands, and other services. Many times people want to help, but they don't know how to ask or what to do. Having a list of needs available to everyone will prevent 15 calorie-rich casseroles on your doorstep the first week.

2. Several organizations offer free or discounted rates for travel and lodging if a patient must travel for treatment. Corporate Angel Network offers free rides for patients traveling to treatment. Joe's House offers discounted hotel rooms, and the American Cancer Society's Hope Lodge offers free lodging for patients and caregivers.

3. Tap into services that help pay for cancer care, such as the Patient Advocate Foundation's Co-Pay Relief and various drug assistance programs.

4. It may take time, but it's worth keeping insurance statements, bills, and medical records organized. Follow a strategy to make sure you're getting the most out of your insurance plan.

5. Take advantage of tax exemptions for cancer expenses, including mileage and transportation costs associated with treatment.

6. It may take some searching online, but there are grants and services available through various local organizations that may help pay for child care, house cleaning, transportation, and other basic needs. Your local hospital and non-profit cancer organizations may also have information on these services.

7. Look into services and grants provided by non-profit organizations that focus on your cancer type. For example, the Leukemia & Lymphoma Society provides financial assistance to patients in significant financial need, and the Colorectal CareLine Financial Aid Fund provides assistance for travel, lodging, and child care.

8. Don't hesitate to flash the "cancer card" sometimes, even if the patient is past treatment. Ask about special discounts provided by companies for products or services used during cancer treatment. Many airlines offer discounted rates if traveling to a specific hospital. Childhood cancer survivors (and children of adult cancer survivors) are eligible for specific college scholarships from various organizations.

Know any other tips to help shoulder the finanical burden of cancer caregiving? Please add your own!

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COMMENTS

This is a great list for families who are facing cancer or other illnesses (even Alzheimer's, ALS, etc) and need to create what I call "a tribe" of care.

My mother had Parkinson's, heart disease, and later, Alzheimer's and as her daughter and full-time caregiver, I had to figure out how to manage the various aspects of her life--financial, physical care, emotional concerns--and still be her daughter and not just a machine.

One suggestion I might add is if you can find a family advocate--a sibling, niece, dear friend who is willing to run the clearing house--that way, meals, transportation issues, those willing to come sit for a day or run errands doesn't have to bother the immediate family. The more they can stay focused on being a family the better. That care/family advocate is such a godsend in such trying times.

Thanks again for this concise and much-needed information that I know will help thousands.

~Carol O'Dell
Author, Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir
www.mothering-mother.com
- Posted by Carol O'Dell 6/25/09 10:15 AM

I was helping my mom and dad during the last few years, with the bulk of responsibility on my mom. I did do some of the research that you suggested and came up with no help from most of them as they live in a rural area with little supports. The Co Pay relief program looked promising but they only take new people at certain times and the phone is not manned daily. So my parents were never helped. My mom resisted hiring help in until it almost killed her, so caregivers beware of going past your own physical limit. Even with my help it was tough on all of us. We really need one entity to go to for help that can help families find help easily with not much of a time investment. Their time needs to go to the ill one and their own families.
- Posted by Linda 7/20/09 9:07 PM

I was diagnosed with Multiple Myeloma in Nov 2008, and I thank God for my Mother (Retired) who became my Caregiver. Despite my insurance, my Mom paid my co-pay and other expenses until I searched the internet for aid. I also live in the rural areas and I found that these organizations provided help and I have not complained at all, just thanks for all the help I received. They are: The Healthwell Foundation (800)675-8416, Patient Advocate Foundation (866)512-3861 and there are more listed under The American Cancer Society.

I sincerely hope this helps.
- Posted by Andrea 9/25/09 5:59 PM

The American Cancer Society also offers a wide variety of patient support services, such as the Road to Recovery program, which provides transportation to and from treatment for people who have cancer and do not have a ride or are unable to drive themselves.

http://www.cancer.org/docroot/ESN/content/ESN_3_1x...
- Posted by Megan 11/13/09 9:51 AM

what is a CANCER CARD?
- Posted by MARCELLA COX 2/20/10 6:51 AM

Hi, i work for the family resource network in Brick, NJ. We are a non profit organization supporting those with developmental disabilities and their families.

We are having a National Caregivers Conference in Iselin, NJ on October 26, 2010. Please check our website out: www.nationalcaregiversconference.org and post this on your blog page if interested that way we can spread the word about our conference. The keynote speaker will be John Crowley, the man who inspired the movie, "Extraordinary Measures." He is also the President and CEO of Americus Therapeutics.

Any information regarding our organization go onto www.familyresourcenetwork.org
- Posted by family resource network 6/30/10 2:05 PM

Thank you for all the info! I am the patient, my hubby, the caretaker. I am very blessed to have a wonderful network of friends, three in particular, who help us on a regular basis. At this point, thankfully, I am relatively independent, except that I no longer drive. I am a retired nurse, so am able to do my own dressing and bag changes, ect. When too sick to do so, home health kicks in. The "cancer card" is when you mention that either you or your loved one has cancer. I try to save that for when I really need it, but it has helped in the past when we've had to change travel reservations, for instance. It helps in many ways, and, why not? Cancer is a very difficult thing to deal with for all involved, and if it helps by mentioning it, why not? We try not to take advantage of it!
- Posted by DebraD 6/14/13 12:06 PM

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