Caring for the Caregiver

Whether you provide physical, social, emotional or household support, caring for patients suffering from rare and chronic bone marrow failure disease is not a simple task. It can be stressful for caregivers, patients and other family members who might also need their own form of support. Caregivers must themselves feel well in order to manage their responsibilities.

Caregiver Stress

Don’t deny or ignore the fact that being a caregiver will have an effect on you.

The stress of caregiving can have a similar impact on the caregiver. “Be aware that being a committed caregiver carries with it physical and emotional health risks. There’s significant data that tells us the stress of being a caregiver can erode and adversely affect the immune system, placing caregivers at risk for chronic illness, insomnia, anxiety and depression,” says Jane Meier Hamilton, RN, MSN.  “Don’t deny or ignore the fact that being a caregiver will have an effect on you.”

According to the American Psychological Association (APA), the needs of family caregivers often go unnoticed despite the knowledge that caregivers may benefit from healthcare and social service agencies. The APA notes that family caregivers may lack support networks and may not have the time to access networks that are available. Family caregivers may have limited access to their own personal support networks, like colleagues, spouses, children or other family.

Those who are working in addition to their caregiving role may feel they must hide or minimize or hide the adverse impact of caregiving while they are at work. In addition, a diagnosis of chronic illness can strain a relationship between a patient and family members involved in their care. Adult bone marrow failure patients who have children face the additional challenge of parenting with an illness. Meaningful, compassionate and committed caregiving is unquestionably a hard job. Over time, it can take a toll on body and mind, heart and soul, finances, family and work life. It becomes hard to give good care when stress saps energy and resources, but with the regular practice of self-care, a caregiver can promote resilience and good health.

How to Support Caregivers

Jane Hamilton and others suggests taking time to take care of yourself as well as your loved one. “Self-care is an investment in your good health, both physical and mental -- it is shown to build resilience.  Resilience is your capacity to respond to adversity, to bounce back from setbacks and challenges.  Resilience helps you handle care giving situations and sometimes, even to grow from them.” Hamilton describes resilience as a bucket filled with your love and energy.  “In caregiving, you are pouring out the contents of this bucket for the other person’s benefit.  If you don’t refill the bucket, it will soon be empty. When your bucket of resilient energy is empty, the care you can provide diminishes in quality.  Or you may become so depleted that you become unable to provide any care at all.”

Are you feeling depleted, overwhelmed or all alone with your care giving responsibilities? Seek support from other caregivers. Because bone marrow failure diseases are so rare, it is often difficult to get in touch with others who are dealing with issues similar to your own. AAMDSIF can help by putting you in touch with other patients and families battling these diseases. There is great strength in knowing you are not alone. The Support Connection is a national network of volunteers, including patients, caregivers and family members willing to listen and offer comfort and support. Call (800) 747-2820, select option 1, and our patient educator will match you with a Support Connection volunteer who can best meet your needs.