When I was a teenager, my Dad had a series of strokes. When Mum went into the hospital for minor surgery, a woman in a white uniform arrived in our house to take care of Dad. I couldn’t stand her and she didn’t think much of me. In those days, I was studying theatre at university and rehearsals often lasted till well into the night. This nurse disapproved of my hours, of the state of my bedroom, and I suppose she disapproved of the way that I spoke to my Dad (normally). I was glad to see the back of her.
Over the years, I’ve learned a lot about the power politics that sometimes play out in homecare. I have learned that caregivers who are team players by nature often become like members of our extended family. I have learned that in home nursing for children, the rules of agencies are often at odds with what families need (eg. we don’t want uniforms that remind my child of hospital stays and painful procedures). All families are different and families have the right not to be judged in their own home.
For the most part, we have had wonderful paid caregivers in our home – people who honestly loved my family members with care needs and respected our way of life in our most private domain. Once in a while though, a nurse would arrive who insisted on the uniform. We had a male nurse who insisted on changing everything around in Nicholas’ room to be more ‘like we do it in the hospital’. He constantly referred to me as ‘Mum’. Calling mothers ‘Mum’ is standard fare in hospitals where doctors see so many sick children that they cannot possibly remember parents’ names. But at home, I wasn’t having it. “I’m sure your mother would rather have exclusive rights to being called “Mum” – please do call me Donna. I insist, as this is my home”, I said, smiling. My little ploy had no effect and this nurse continued to wear his uniform and call me “Mum”. We replaced him.
Palliative care is a discipline that has mastered the art of working with families. Homecare workers of all levels are team members with caregivers, but it’s the patient and family who are the acknowledged leaders. Our palliative care doctor (and all his staff) were the best example of team players I have ever seen. Basically the message was “what would you like to do about this and how can we help?” Naturally, that is a very different message from one in the hospital where you need the professionals to take charge and direct treatment. But even then, in the case of chronic care and lengthy hospitalisations, the relations between family, patient and professionals rightly take a shift to be more relaxed, open and collaborative.
One thing I know is that I cannot give care alone. For my complex relatives, it takes a team of family together with professionals from across disciplines and levels of qualification. Besides great professional skills, I look for friendliness and flexibility in our prospective team members. Oh, yes, and a sense of humour. With those qualities, we’re bound to be friends for life.
Dear Ms. Leong—
I was in the OR yesterday operating in the room right next to Gavin’s. You can imagine my shock and profound sadness when I learned he was in fact the child undergoing organ harvest. We stopped our case in a moment of absolute silence for him. I am so profoundly saddened by your loss. The world has truly lost one of its most courageous beings. The example of care and unconditional love that infused through you to him will stay with me forever. I am so blessed to have been touched by the both of you.
My prayers and thoughts are with you, Ed, and the rest of your family and circle of friends. Most humbly yours,
Peter Gabos, MD
Alfred I. DuPont Hospital for Children