4pm. The fag end of a long day. I was tidying up the loose ends, when I noticed an old lady visiting one of the siderooms. The patient in there was in his late 30s with end stage multiple sclerosis, who presented with multiple seizures. A CT head had shown no new problems, just long standing hydrocephalus which is a possible late sequelae of MS. Incidentally, there is some controversy as to whether the apparent hydrocephalus on imaging in MS is a true communicating hydrocephalus or just the appearance caused by periventricular white matter loss with disease progression.
I remembered this was a patient who was a potential discharge. I had seen him myself earlier, and remembered that he did not respond to direct questions but seemed alert. We did not know his baseline status nor his care package, so I hoped that this woman would be able to shed some light.
“Hello. My name is Viral, one of the doctors. May I ask how you know Mark?” (not his real name)
“I’m his mother.”
I thought this was a possibility, but I had assumed she was too old to be the mother of a 38 year old.
“Would it be OK to ask you a few details about your son to help us plan his return to home?”
I took a social history, and established that this man was entirely dependent on his live-in carers for 24 hours of the day. He relied on them for eating (via his PEG), toileting, moving, cleaning, financial work…virtually everything I could think of.
I thought how terrible it must be for a mother to see her son like this. The she said something which stunned me.
“It’s just him and me. My husband died four years ago, and we only had one child. I had no brothers or sisters, so it’s just us.”
There I was, planning a discharge and checking the obs were stable and feeling like I had it tough when I was face to face with a woman who knew she was the only person in the entire world who would ever really care for this man properly. If she was not there, this man would have no one.
The fragility of the situation struck me.
She told me how every time he is in hospital, she lives alongside him during every visitor hour possible. She spoke directly to her son, and for the first time since his admission three days ago, I witnessed this man speaking and replying to questions. She told me about the foods he liked before the PEG, and the way he used to charm the nurses into giving him his favourite foods. She smiled fleetingly at this memory, before her concerned expression took hold of her face again.
“He’s all I’ve got.”
This man clearly needed his mother. However, the mother also needed her son. He was all she had in this world, and his dependency on her seemed to give her a strong sense of purpose. She understood the medical background to MS very well, and taught me a few things about the various treatments in end stage MS. She prided herself on the level of care she gave her son, and I was very impressed by the depth with which she had researched the condition and sought out the very best treatment.
I shuddered to think what would happen when one of them passed away, leaving the other. I realised that this situation was inevitable. There was the here and now, these fleeting moments when one human can care for another and the other human is reassured knowing they are loved before one of them will be utterly alone with just fading memories to keep them company.
None of the care we give in medicine can compare to a mother whose very life is caring for her son. The son was clearly happiest when the mother was around, as evidenced by his improvement in interactions and communication, and by restricting these times to visiting hours only we could only be causing them anguish. I realised then that sometimes our duty as doctors was to get patients back to their status quo as soon as possible, perhaps more than trying to fix every last medical detail.