“I am afraid to die. Not because I fear death, but I just can’t imagine what would happen to Hans if I were not here?”
These are the words often spoken by Hans* grandmother.
Hans is one of the many Rachel House patients whose main caregiver is their grandmother. In the autumn of her life, Hans’ grandmother has had to assume the role of a mother and a father for Hans, who is diagnosed with a serious and life-limiting illness. Bereft of any support system, she is left alone to fend for herself and her beloved grandson.
Hans’ parents abandoned him when they received the confirmation of his diagnosis. Under the pretext of looking for work in a different city, Hans’ mother left him with his grandmother when he was just one-month old. That was 4 years ago. No words have been heard since from both his parents, and Hans’ grandmother has never been able to reach them. They have left Hans with an elderly grandmother who is physically weak and financially devastated, to take care of a boy whose health hangs on a fine balance and can deteriorate in an instant.
Often when Hans’ health takes a terrifying turn and he has to go in and out of the hospital, his grandmother knows only to hold him close and cry with him as he screams in pain; she simply does not know what else to do.
What we do to help
Life has become much easier since Hans was admitted as a patient of Rachel House. With nurse Mutiara from Rachel House walking by their side, Grandma no longer needs to struggle alone; she now has a support system. Nurse Mutiara would visit them regularly to check on Hans’ medical condition and manage the physical symptoms such as fever, chest and skin infections and diarrhea. The goal is to make sure he is healthy and able to thrive. For Hans and his grandma, food and other basic necessities are also provided to make sure grandma has the energy to provide the best care for Hans.
Grandma also has Yus, Rachel House’s community health worker, to call on, should she need help or simply someone to talk to or confide in. As a listener and a companion, Ibu Yus has helped ease Grandma’s worries tremendously, especially with her fears and worries about Hans and the illness that plagues him. Nurse Muti and Ibu Yus have become the dependable shoulders to lean on for Hans and his grandmother.
This is Rachel House’s reason for being. To ease the suffering of children living with serious illnesses, and to provide support for their families. To take care, not only of their physical and clinical challenges, but also to ease their emotional, economic and social challenges – to be their lifebuoy in the turbulent seas.
*name changed for privacy