Personal views: My mother's name was Jan
Authors: Kevin Perrett
Journal: BMJ (2002)

My parents recently celebrated their golden wedding. Friends and family, including my parents' 10 grandchildren, gathered for a memorable party to toast 50 years of love and partnership.

The following week mum and dad went to Paris for a romantic holiday and had three lovely days strolling hand in hand in the sunshine. Early on the fourth morning mum collapsed from a massive subarachnoid haemorrhage. I was at the hospital in Paris by early evening and stayed six days until, after a series of battles, we brought mum home, still in a deep coma, by air ambulance.

The language barrier was our first major problem, just as it must be for so many of our patients in the NHS. The key doctors spoke excellent English, so we had clear medical information, but the nurses did not. My GCSE level French was enough to communicate only a few basics. It was not nearly enough to develop a rapport with the nurses in whom we had to entrust mum's care. Like the stroke itself, the language barrier was no one's fault, but without communication, trust is hard to generate.

Less understandable, and much harder to bear, were the difficulties we had with the rules and culture of the neurosurgical unit, where mum spent most of her time. I was often confused and scared and, on one notable occasion, shouting mad at the way we were treated.

The visiting rules were remarkably old fashioned—only half an hour in the afternoon and an hour in the evening were allowed. The doors of the ward were always locked, including the one marked for visitors. When we did reach mum's room, no chair was provided. Arriving at one visiting hour we rang the bell three times, hearing it ring clearly on the ward. We were kept waiting 15 minutes. Wanting to speak to a nurse I was told that they were busy.

We involved the British embassy, which acted as an advocate by phone. Later, when the insurance company started playing games, the embassy was probably the key to getting mum repatriated sooner rather than, as the insurers wanted, later.

It may also have helped that I lost my temper on the ward. No one answered the ward doorbell on a second occasion, after I'd politely pointed out the problem through the consultant. Furious, I went on to the ward through the staff entrance. Shouting the odds in the middle of a neurosurgical ward is not something that I would usually do. But it certainly attracted the staff's attention, enough for me to explain haltingly that my mum's name was not, as they called her, Dorothy.

Although her given names were Dorothy Janet, my mother's name was Jan to all those who knew her. It was an understandable error, but it had become symbolically important, in a situation in which we felt unwelcome and uninvolved, that those in charge of mum didn't even know her name.

As soon as we arrived at the hospital back home the atmosphere of mum's care, and of the care of us, her family, changed beyond all recognition. The lack of a language barrier helped greatly, of course. But more important was our open welcome on to the intensive therapy (ITU) unit. The doors were, literally, kept open and there was a large room for relatives, where the whole family camped out.

Soon after arriving, we had a conference with the ITU staff about what was best for mum. We turned off the ventilator, and the monitor, and allowed my mum to die 24 hours later.

The care we received as a family was wonderful. It was caring, but not sentimental, attentive, but not intrusive. The nurses had the skill and experience to know when to stay and chat and when to leave us alone. I was impressed as a doctor, simply relieved as a son.

We took it in turns to sit with mum, as a group or in ones and twos, to say our goodbyes. It was hard but absolutely what we, and particularly dad, needed. During the next day, increasingly dad was alone with mum. We, her children, waited in the family room to be there when she died.

Not long before she died, mum's nurse asked dad if he wanted to get into bed with her. It was exactly what he wanted, though it wouldn't have occurred to him, or us, to ask. Dad rushed to the relatives' room to grab his washbag, had a quick shave, and put on aftershave. We sat and cried as he raced off, a 79 year old like a teenager on a first date. They were left alone for a long, final cuddle. Mum died, with her family around her, soon after.

Just before we left dad said—and there could be no better tribute to the care we received—that he'd had a “lovely day.” A last lovely day with his wife of 50 years, my mum, who's name was Jan.