Caring For Someone With Multiple Myeloma – Part 1: Introduction To Being A Caregiver

Hi gang-

Thought that this might be of interest to some of you.  The Myeloma Beacon is an online fountain of information, and has been VERY helpful to me... a "caregiver".   Funmi interviewed me for this article several months ago.  Thought I'd share it with you guys....

By Funmi Adewale and Christine McLaren

Published: Sep 29, 2010 3:20 pm

This article is the first in a three-part series about caring for a loved one with multiple myeloma. The first article provides an introduction to caring for a cancer patient as well as resources for caregivers. The second article will provide practical tips for caregivers, and the third article will explain the tolls of being a caregiver.

In October 2008, Dianna Allred’s husband, Mark, was diagnosed with multiple myeloma after suffering a severe spine fracture.

As Mark’s pain increased dramatically after the fracture, Dianna took action. “I called the doctor and told them we needed an MRI. Something was just not right,” she described in a phone interview with the Beacon. An MRI and a CAT scan later, Mark’s myeloma was diagnosed, and in Dianna’s words, “The ball started rolling from there.”
Immediately, Dianna assumed the role of Mark’s primary caregiver, the person who would help him cope with cancer.

A study by the National Alliance for Caregiving in collaboration with AARP, called Caregiving in the U.S. 2009, estimated that 65.7 million adults in the United States (29 percent) provide care for loved ones with a range of special needs.

While there is not a single specific type of caregiver, the study determined that the average age of a caregiver is 48 years old, and 66 percent are female. The study also found that caregivers provide an average of 20 hours of care a week. Constantly on call, a caregiver’s work varies from managing prescriptions to being a companion in times of emotional hardship. It can be an overwhelming task, especially if the caregiver has a full schedule of his or her own.
Fortunately, there are resources for caregivers who are looking for advice or wanting to connect with others in the same situation.

First Steps For Caregivers

Prior to diagnosis, most people have never heard of multiple myeloma. This was the case for Nan Manzo when her husband Dom was diagnosed in the spring of 2008.

“We had never heard of it,” Nan said in an interview with the Beacon. “All we knew was the big C: cancer. We were just absolutely shocked. And then [the doctor said], ‘All is not lost. You’re a good candidate for a stem cell transplant.’ Our mouths dropped even further, ‘What is a stem cell transplant?’ It was just so much information at once. Our heads are still spinning.”

For Nan and Dianna, the first step after learning of their husbands’ diagnoses was to educate themselves about the disease. Caregivers can learn more about multiple myeloma through physicians, nonprofit organizations and foundations, reputable websites, and blogs written by myeloma patients.

It is important to be careful when researching on the Internet because not all the information is credible. Keeping a journal of informative websites or questions to ask at the next doctor appointment may prove helpful. Important topics to research include treatment options, side effects, and clinical trials.

The amount of available information can be overwhelming and paralyzing, making it difficult to know where to begin. As a caregiver, remember that you do not have to know everything.

You can start by connecting with more experienced patients and caregivers, just as Mark and Dianna did. Through a chat line provided by their treatment center, they met Doug Carlsen, a multiple myeloma survivor.
“He was wonderful. He told us what to expect when we first found out about myeloma. We got his name from the hospital, and we just called him up and talked to him. He walked Mark through this. It calmed our nerves just to be able to talk to somebody who knew what we were in for,” Dianna explained.

While learning about multiple myeloma, it is also important to learn how to care for someone with cancer. Similar to learning about the disease itself, you can gather more information about being a caregiver from the Internet, brochures, and books.

As you educate yourself about the disease and your role as a caregiver, remember to take one webpage and one topic at a time. And take breaks! There is no possible way to learn it all in one day, so pace yourself. Although researching takes time and energy, information can be empowering and can contribute to greater peace of mind.

“Knowledge is power,” Nan advised. “Ask questions, take notes, and go home and research. It makes it a lot easier to comprehend and understand what they’re doing when you know how the whole thing works.”

Resources For Caregivers

There are a number of websites specifically for caregivers, such as the Family Caregiver Alliance, National Family Caregivers Association, and National Alliance for Caregiving, which provide information and advice, chances to connect with other caregivers, and research on caring for a loved one. Some websites for caregivers, such as Everyday Health, specifically provide information for multiple myeloma caregivers.

Check with local branches of patient advocacy groups for seminars and workshops offered to caregivers. The American Red Cross has a training program, called Family Caregiving, that covers topics such as caregiving skills, healthy eating, legal and financial issues, and caring for a caregiver.

While caregiving websites can provide general advice, blogs can provide insight into life as a caregiver. The Beacon’s Links section lists many blogs written by patients and caregivers, including Dianna and Nan and another caregiver Lori Puente. These patients and caregivers write about their progress, setbacks, treatments, emotions, and personal thoughts.

It is important to remember that you are not alone throughout this process. Connecting with other caregivers can help you learn more quickly about myeloma and being a caregiver, and it may be comforting to be able to share with others during the ups and downs of life with myeloma.

If you can, take a couple of hours each month to participate in a local support group. The Leukemia & Lymphoma Society, International Myeloma Foundation, and the Multiple Myeloma Research Foundation can connect you with support groups in your area.

If you do not have the time to attend support group meetings or if there are not any nearby, you can participate in Internet discussion boards, such as the Beacon forums, from the convenience of your home. This approach allows you to connect with other caregivers over great distances. There are also a number of forums and public chat groups for myeloma patients and caregivers available through the myeloma foundations, treatment centers, and also many e-mail servers, such as Yahoo!, AOL, and MSN.

For more information about caring for a loved one with multiple myeloma, please check back for Part 2 and Part 3 of this series.

http://www.myelomabeacon.com/news/2010/09/29/caring-for-someone-with-multiple-myeloma-part-1-introduction-to-being-a-caregiver/