by Pat Killingsworth, multiple myeloma patient and blogger
Living with multiple myeloma is never easy. Even when things are going well, the specter of relapse haunts us all. For many of us our journey is made easier thanks to the help and support of a loving caregiver, husband, wife, or other family member determined to be there for us at every turn.
My wife of almost 30 years, Pattie, is my caregiving angel. Sometimes a son or daughter steps up. I recently spoke to a father/daughter team that illustrates my point. Carol from New York quit her job when her father was diagnosed with multiple myeloma last year. She’s by his side at medical appointments, to make sure he takes his meds, exercises and eats well. Carol even helped him apply for financial aid.
But what about those who don’t have an able spouse, or other family member, to help out?
Sometimes family members are unable—or unwilling—to help. My neighbor, Jeanine, faces this challenge. Her husband has early stage Alzheimer’s. One sister lives a thousand miles away. The other’s husband is dying from Stage Four liver cancer. How does someone like that get help?
Friends want to help. But with time, they sometimes drift away. We all have busy lives, with families and responsibilities of our own. In my neighbor’s case, Pattie stepped up to help. She visits Jeanine practically every day, assisting her while paying bills, coordinating local, county, and state based services—and to provide emotional support.
The challenges for someone like this are daunting. But there are people whose job it is to help. Here’s a list of tips that Pattie helped me put together that might help those of you who need more help:
- The most important thing to do is finding someone to help you manage it all—to make sure that your medical and financial needs don’t fall through the cracks.
- Start with social workers. Most all hospitals have one. Large oncology practices employ them, too. Most cities and/or counties also have them. Enlist their help. And don’t be afraid to garner assistance from more than one.
- Your doctors and nurses want to help. Explain what you need, then follow up. Remember, the “squeaky wheel” is more likely to get help. Remember to be considerate and kind. You’ll get more help that way.
- Organizations like the MMRF, IMF, LLS, Cancer Care and the American Cancer Society can help in so many ways. But sometimes you need to dig a bit. Did you know that the American Cancer Society has a program that provides volunteers to help get you to and from medical appointments?
- Patients should take advantage of resources in their county. Budget cuts have left many staffers overworked and hard to pin down. Be patient and persistent. Medicaid recipients should be able to get additional assistance.
- Tap into drug company resources. Every pharmaceutical company has some sort of patient assistance program. Companies like Takeda, Celgene and Onyx have paid staffers devoted to helping patients that are using their drugs. Often these staffers are searching for people to help! In addition to financial aid, most are also available to provide emotional and practical day-to-day support, too. Again, follow up if they don’t.
- Don’t forget about other drug companies. Sometimes you can get help from companies that make your other meds, too.
- Friends and neighbors are often willing to help. Try not to overburden them, or they may stop answering their door or phone! After all, driving you to the grocery store, or raking your lawn, isn’t really their job. But if they offer, don’t be shy; take advantage of their help.
- Churches are an excellent resource. Many will help you take care of your home and yard.
- Financial help is available from the Leukemia and Lymphoma Society (LLS), the Chronic Disease Fund, the Patient Advocate Foundation, Cancer Care and others. I wrote a book about it, Financial Aid for Patients and Caregivers.
- My book lists a number of other free services available to myeloma patients. Cleaning for a Reason helps women with cancer by cleaning their homes. Compassion Partners provides myeloma patients—and their families—with free passes to Florida theme parks. Maybe you can get some help from reluctant family members if you offer to take them to Universal or Busch Gardens!
I’m sure there are other sources for assistance. Maybe our readers can make additional suggestions?
Like so many other things in life, the first step is often the most difficult. Start by making an assistance to-do list. Even if you only check off one or two boxes a day, you’re bound to be better off for it.
Most patients have certain times of the day—or specific days in their treatment cycle—when they feel best. Plan your calls or visits for those days and times.
I realize that if you don’t feel good, it isn’t easy to press others to help. But don’t give up! Be persistent and help shouldn’t be far behind.
Feel good and keep smiling!
To learn more about Pat Killingsworth: Multiple Myeloma Blog