When patients reach End Stage Renal Disease (ESRD) many find that their normal lives fall apart as they must deal with several additional burdens brought on by their condition which normally make family life very difficult because it causes feelings of dependency. In order to contend with this burden people with ESRD stop asking their love ones for assistance, and begin compromising their treatment plans resulting in a poorer quality of life and sometimes even premature death.
A study shows that patients who believe that their ill health interferes with social activities, isolates them, or creates a burden to their family, and who lack family support are more likely to live shorter lives than those who do not. These patients were also less likely to follow their doctors’ orders (such as controlling weight), maintain dialysis, or strive for a high quality of life. Individuals with ESRD who have a longer life span on dialysis are typically satisfied with their healthcare team, have a high level of emotional and social support from their family, and accept the idea of moving to a nursing home if necessary. 23% of those with ESRD expressed a desire for more information about their condition to better determine when or if their care may become too burdensome for their family. This may also be an important factor in reshaping their view of Kidney Disease and the way of effectively managing the burden it causes their family.
Those suffering with ESRD can adopt several strategies to minimize a perceived burden on family/caregivers and maintain a positive attitude. This begins with a thorough self-examination and acceptance that you are presently doing all you can to take care of yourself. Secondly, you should communicate your feelings of frustration regarding issues of dependence/independence with family members, and ask them directly if they feel you are a burden to them. Chances are your feeling of being a "burden" is more perceived than real. Also, if you have financial issues (fixed income, insurance, etc) which are adding additional stress on the family, consult your social worker for solutions.
Remember that your illness can serve as a learning opportunity for you and your family by which you all may become more closely united. Some suggest that prayer and meditation keep them from becoming distressed about their illness and create a strong family bond. Family/caregivers help patients better navigate the complex healthcare system to more effectively manage their disease and obtain more desirable health outcomes. Studies show that family support is necessary in assisting a person with ESRD in the management of their health to achieve physical, mental, and social well being.
"Social Support Crucial to Dialysis Patients' Health." - Renal Business Today
Johnson, Julia O., BSN, MA. "Patients’ Experiences of Being a Burden on Family in Terminal Illness." Renal Business Today