When I was nursing student, I met a 50 year old beautiful lady who had Amyotrophic Lateral Sclerosis (ALS). She was waiting for me, I noticed a slight movement of her lips as her way of smiling at me every morning at 8:30 AM. Just like clockwork, her husband arrived shortly after I did.
They were always together and didn’t have children. She was able to communicate with letter board without verbal communication since she had tracheotomy on her throat. I would hold the board and pointed each letter, she told me “YES” with a blink. When she was angry or upset, lot of air came from her tracheotomy on the throat and made her cheeks red. I helped her with basic living activities like suctioning and body washing; in addition, we talked a lot. She was very funny and sweet. She talked about her husband, boys and life. We became exceptionally good friends.
Her husband came to see her every single day without fail. He was also very funny, but every now and then I would hear some unkind words – “I’m so busy but I came!”, “Don’t complain too much!”, “Don’t be selfish!”. I was worried about the way her husband was taking care of her. I was too young to understand if this was how couples generally act. I asked her about her husband when he was not around. “He was always like that, and always has been, and always will be” almost 30 years together, she said that he didn’t change because of the disease, he respects who she is as herself and a wife. I thought that only kind words help patients, I was wrong. Patients want you to be real and to be respected as everybody else.
“He was always like that, and always has been, and always will be” almost 30 years together, she said that he didn’t change because of the disease, he respects who she is as herself and a wife.
Meaning of “Good care” varies among patients. Sometimes the care you offer isn’t the care a person needs and sometimes the gestures you offer are not wanted, even if you think it might be best for the person.
It’s so hard to read how people want you to treat them, especially in that setting: do you want my pity? Do you want to be left alone?
The most valuable thing I’ve learned is to treat others with respect no matter what and in any situation.
Author: Kanako Nishino, Community Engagement, Rare Is Special
Kanako has worked as pediatric nurse in past in Japan and has provided health care to children affected by rare diseases. She has been involved in the development of Rare Is Special.
* Acknowledgement: This article is edited by Diode de Dios, Rare Is Special
* Image Courtesy: Kanako Nishino, Rare Is Special
Copyright © Rare Is Special, USA
