When one hears or read about palliative care, the first thing that comes to mind is often about pain relief, or respite from suffering. Yet on my first visit to Jani’s house, I could sense only festivities and joy in the room, and not one ounce pain could be felt anywhere.
Jani and her mother were all dressed up and ready for a celebration when we arrived at her house that morning. It was Jani’s birthday, and I had accompanied Nurse Rifa, one of Rachel House’s palliative care nurses, on this joyous day. As can be expected of any child on her birthday, Jani was totally over the moon. As we presented her with the birthday cake, Jani laid eyes on the set of bling we had brought along! She quickly put on the tiara and the matching jewelry set that perfectly completes her princess outfit. The decor of her home matched the occasion beautifully, the pink wallpapers of different designs and cartoon characters, including one saying “Happy Birthday”.
Sharing songs and fun-filled moments like these with Jani is something Nurse Rifa tries to do on her weekly visits to the house. However, since first meeting Jani 9 months ago, Nurse Rifa’s main task has been to manage the many symptoms that takes away the joy from this little girl. Living with HIV and pulmonary TB infection means that Jani is constantly plagued with symptoms that range from chronic cough, recurrent diarrhea, and fever that weaken her body and stop her from attending school, to sometimes scary ones where every breath becomes a challenge. On this special visit, witnessing the special bond between the family and Nurse Rifa, it was so clear for me that for Jani and her mother, Nurse Rifa has become part of the family and more; for them, the Rachel House nurse is the reason why Jani can once again play and laugh as other children do.
As Nurse Rifa began assessing Jani’s condition, I sat down for chat with Jani’s mother. As a full-time caregiver, she has the difficult task of not only tending to her daughter’s tears and tantrums when things are scary, but she has her own health to worry about (living with HIV herself). She found the support given by Nurse Rifa and the Rachel House team to be invaluable to her family’s well-being, stating that, “We are so lucky to have Nurse Rifa who faithfully visits every week. I have someone to talk to, and my daughter has someone to play and study with. We are no longer alone and afraid.”
Seeing the burden that is carried by Jani and her mother, I can see how having a home care team that provides both medical and emotional support are such a gift and a blessing for the family. Jani’s road to recovery might not be easy, but with the combined love and care of Rachel House’s nurses and her mother, I know that she has a better chance to live a full and joyous life and hopefully celebrate many more birthdays to come.