My life is a constant misunderstanding due to auto-correct, my very Afrikaansness, some of our patients’ inability to communicate verbally and the fact that almost none of my staff speak English as a first language. This week was no different and resulted in many belly laughs. In fact, yesterday, Jodi, Jesne and I laughed so much that we cried. Later that day we cried again, but for different reasons.
We have an insomniac here and as you all know, together with sunlight and exercise, sleep is one of the best healers. It was suggested to us that we should… yes you are reading this right… ”seduce” him. We were all quite surprised and wondered what would follow said seduction to make him sleep. Luckily, just before we unpacked this some more, we realised that auto-correct decided that sedate is much less exciting than seduce. Rest assured, the patient had a sleeping tablet and no one in suspenders showed up to his room.
I also received a very strange text from a doctor we work with periodically. She had a patient with us who was young and strong and just recovering from a minor surgery. She changed his pain medication and sent me this message “I sent a new script for Samuel, please give him the meds. He might get constipated, if he dies just let me know.” This doctor is known for her rather cold bedside manner, but I have come to adore her and I was shocked at this heartless message! I was imagining myself phoning his young wife and letting her know that he had died and that she would have to raise their little kids alone. Minutes after the doctor’s message she wrote back….” if he DOES, if he DOES, sorry, not DIES!” I am happy to report, no one died, and no one got constipated.
Speaking of doctors, our very own Dr Jodi sent a message to the carer team on Saturday instructing them to count the tables in one of the patient’s rooms. This was such a strange request as our tables are generally in the dining room, but I the staff assumed she meant the little desk needed to be counted. She obviously meant TABLETS.
We recently also had a fail when the team thought I had managed to get totally BEE compliant as I texted them that I would be black later… They were disappointed when I just came back, and we were all amazed that Olida brought Pringles to the staff meeting after she promised to get pregnant for the meeting.
What I absolutely loved too was when Noreen sent me a message one morning to advise that a patient was coughing up flames. I was a bit worried because that’s a burning cough on a whole other level. The flames were in fact phlegm… and in Noreen’s defense, her spelling makes a lot more sense to me than the Oxford spelling.
Communication is so important. Apart from the noise at hospitals, this is the biggest issue. The patients and the families feel like no one communicates with them. They spend ages trying to get hold of staff in the wards to check on loved ones and battle to see the doctors to find out how people are doing. I remember the frustration during the worst of the COVID waves when people had loved ones in ICU, were unable to visit and were unable to find out how they were. Our approach to communication is vastly different. We try to send our patients’ families daily updates and put together WhatsApp groups just to pop them a picture, to say that they slept well or even to share a funny comment they made. It makes everything easier for everyone and literally takes five minutes to do.
Over the past weeks I have been in awe of my carers and deeply grateful for my health. We are looking after a man with motor neuron disease (if you don’t know what that is, it is what Joost van der Westhuizen and Stephen Hawking had). It is one of the cruelest and dehumanizing illnesses there are. It is a progressive neurological disorder that destroys the motor neurons which are the cells that control muscle activity such as walking, breathing, speaking and swallowing. You can still feel pain however, so it is not like a paralysis you are just locked in a body that no longer works. Mark, who is in his 40’s, was still high functioning 2 years ago, but the disease was so aggressive that he is now rendered totally immobile. He can move some facial muscles but can no longer swallow or speak. Every now and then he is able to smile and it breaks my heart when he does. He can also still cry, and does so often. Mark is lucky to have a device which allows him to communicate by tracking his eyes. It is really quite amazing, although often painfully slow. However, he has to be positioned exactly right otherwise he cannot communicate and it is exceptionally difficult to keep him in this position. If his head is just a few cm’s off to the wrong side, he is rendered helpless. This is terrifying because if he cannot let us know when he needs to be suctioned, he might choke. I am embarrassed to say that before meeting Mark I had no idea of this fresh hell these people live through. When Mark arrived I was overwhelmed, I did not think we would ever cope with him despite making sure there are two carers with him at all times. As the days went on, connections formed and when I go into his room, I am humbled to see how his team understands him. Obakeng is incredible. She understands what he needs when he needs it without him using his device. He never takes his eyes off her. She gives him choices and he uses his eyes to tell her what he wants, when he wants to be fed through his PEG, when he wants his mouth care and when he wants his hand to be moved. She has become an extension of him, and I am filled with pride that she and her team have offered him this incredible safe space where he does not have to be anxious or scared. That he knows that even if he cannot rely on his own body, or on the Tobii communicator, he can rely on us; that we will always communicate and love him and advocate for him, and none of us are worried about auto-correct here. We just want to get it right. We simply want to make this awful time for him a little bit more bearable.
Our phones are incredible communication devices, except when they thwart us with their supposedly helpful auto-correct, but I often think we rely on them and the “convenience” they offer too much. More and more I realise that real communication means looking into people’s eyes, a gentle touch, a timely hug and really seeing them. Often that is the most important kind of medicine and hospitality there is.