On one of my frequent visits to the frail care facility where my father now lives, I encountered two of the demented residents by the side door. One of them, a woman who looks to be in her 70s, is always excessively cheerful and always responds to my greeting. She was particularly chatty that day – a lovely late autumn day in Cape Town. She was gazing out of the door and remarked, ‘I love that wall’. The wall in question is an ordinary facebrick wall that lines the parking alley by the side of frail care. There are plants along the top of it from the gardens of the houses next door, but there is nothing special about it.

That comment has stuck in my head as I watch my father become increasingly frail and demented. Dementia must be one of the cruellest afflictions – to its victims in the early stages when they are still aware of what is happening to them, and to the relatives and carers as they watch a person they have known and loved slip away into a scrambled world.

My regular readers will know that my father is a diabetic and that he lost a leg to gangrene about 20 months ago. After the surgery, once he was back up to full strength again, he had about 12 months of excellent quality of life, during which he was as independent as he could be – given his physical limitations. However, in the past few months things have started to change. There had been gradual cognitive decline during these past months, but about 8 weeks ago there was an abrupt and massive deterioration in his condition, both physically and mentally. The cause is almost certainly a combination of multiple brain infarcts and a larger stroke, which has affected the motor area on his right. This is unfortunate because his remaining leg is on the left. However, worse than the physical decline is the rapidly progressive dementia and memory loss.

Over the past couple of months I have watched my father change from a strong, independent thinker, with a quick and analytical mind, to a shell. His ability to process information is seriously impaired, he no longer has any real concept of time and, while he knows the people who visit him regularly, anyone he hasn’t seen for a while is obviously a bit of a mystery. He also started to develop paranoid symptoms and problems sleeping through the night – which led to nursing problems.

Anyone who has dealt with dementia, either of relatives or patients, will know what follows next. A low dose of anti-psychotic dealt with the paranoia, but he was still not sleeping, waking up through the night, bellowing for nursing staff (he has a very loud voice!), and generally causing problems. So, a very low dose of a benzodiazepine-type sleeping pill was tried – which turned him into a zombie and he still didn’t sleep through the night. To add to the indiginity of everything, he developed bladder outlet obstruction and now has a urinary catheter in place – difficult in someone as demented as he has become because he invariably manages to dislodge the bag overnight.

Anyway, the sleeping pill has now been discontinued, the night staff are learning to cope with his waking antics, and he is no longer a zombie during the day, but the dementia relentlessly progresses and the person he once was becomes more and more distant.

The point of this story is the way in which little things become so important to the demented. The wall in question obviously gives the woman mentioned above much pleasure – she is often standing looking at it when I arrive. My father is satisfied with being wheeled around the gardens of the home by his carer, when before only going out for a good meal would suffice. As his dementia progresses, I can see that he is less and less concerned about his lot in life (apart from the catheter!) and I have started to accept that I have said goodbye to the man who was my father and that the man that he has become is still valuable to those around him. I hope that these words can give comfort to anyone else who is struggling to come to terms with a similar situation.

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