(Adapted from the IWMF Torch, spring 2008)
A recent report by the American Association for Retired Persons (AARP) Public Policy estimates that around 34 million families in the United States provide care to loved ones. Caregivers are traditionally defined as individuals rendering unpaid services for relatives and friends with disabling and chronic conditions. If you have a friend or family member diagnosed with Waldenstrom’s macroglobulinemia (WM), this section will provide additional resources to assist in your caregiver role.
WM is a complex disease that may affect virtually every area of a person’s life, including physical health, cognitive functioning, social roles, psychological well-being, sense of self, and family, work, and social environments. Caregivers for family and friends diagnosed with WM may be called upon to provide a wide scope of services including, but not limited to, emotional support, personal care, and household responsibilities. Caregiving can also affect the physical and emotional health of the caregiver. It is not uncommon for caregivers to neglect their own health at times while taking care of their loved ones. Stress for caregivers comes from worry for a loved one, financial strains, time commitments, decreased social outlets and contacts, work demands, and changing roles.
The watch and wait time period recommended for some WMers adds another dimension to the caregiver’s role that is unique to WM. Sometimes it is hard to grasp that doing nothing, so to speak, is really doing something good and adaptive. It may seem strange to have your loved one or friend diagnosed with a rare form of cancer and advised that the best course of action is just to monitor the disease over time. What should a caregiver to do in such a situation?
STEP 1: Know your loved one or friend and his or her personality and propensities so that you can provide appropriate support and caring behavior. It is not a good idea to deliver supportive and caring behavior without first knowing if what is given will be well received and helpful.
STEP 2: Be well educated on the disease and treatment options. After all, it is difficult to support and care for someone if your information and knowledge about the disease is limited. The Torch, the annual IWMF Educational Forum, IWMF support groups and IWMF-Talk (an e-mail discussion list) all provide a wealth of information and educational resources . Caregivers are encouraged to attend local support group meetings and the annual Educational Forum as well as participate on IWMF-Talk.
STEP 3: Take on the role of just being there during times of deliberation and decision making. This does not mean that the caregiver should tell the patient what to do or how to do it but instead should facilitate the process of thinking out loud, weighing options, providing information, and asking questions for reflection. It is a process of assisting in finding what is best for the individual. And then, most importantly, once a loved one or friend determines a course of action and makes a decision, the role of a caregiver becomes one of providing support, comfort, and help in implementing the decision. The goal is to get through the daily challenges together.
STEP 4: It is important for the caregiver to keep his/her own balance in the process of taking care of another. Strong coping skills, resiliency, emotional support, need for respite, and self care are all as important for the caregiver as for the person diagnosed with WM. All things in nature seem to work better with balance.
In addition to resources offered through IWMF to support caregivers, you may also want to research the other sources listed below.