About two years ago, I was producing a TV story about South African Short Film-Makers - those remarkable creatives who can capture a whole story in a visual moment which may last as little as five minutes. It is the cinematic equivalent of a short story which reveals more than what is there at face value. One of the short films was called Skaap (meaning Sheep in Afrikaans) by a gifted young director, Mzonke Maloney. The film told the story of a young rural girl who travels to the city to care for an elderly white man with Alzheimers, who has been left to die by his own family in the isolation of a comfortable enough suburban home. She was to replace a relative as care-giver and servant. He was locked inside his cocoon of dementia, speechless and dependent, a shell of a human being. She was dropped into his home and most intimate rituals without guidance. The climax of the film is when she toys with the idea of drowning him in the bath where he lies almost comatose in an adult nappy. Spoiler alert - she doesn’t do that. But while that moment of indecision in the film is shocking enough, I was, at that point of watching, transfixed by the male nappy fastened around the elderly body in the bath. I feared that that nappy was coming my way.
In my world before dementia, nappies were associated with the joyful struggle of managing baby’s poo and wee. They were terribly expensive, they were a phase, and moving beyond them into big girl and boy pants was a liberation for the whole family. Adult nappies were not on the horizon, and when flagged, were somehow associated with shame, even when reports came that space explorers wore them, and gamers locked into particularly lengthy online sessions used them to avoid wasting time on the loo during virtual combat. I was horrified at the thought of adults wearing them. I was even more terrified of my having to manage them on behalf of somebody else.
And yet the day came, when my father wet himself. The first time was when he was ill, and I presumed the loss of bladder control was to do with the depletion that came with illness. But it steadily became more frequent, specifically after he survived COVID, and he would wake with wet sheets in the morning, and sopping pyjamas. Luckily everything goes into the washing machine which churns with the regularity of the world going round on its daily axis.
Suffering from vascular dementia, my father can not fully understand what is happening, but he gets upset when he is wet and outraged that his nappies become full and heavy. He is equally relieved and grateful when we can start again in dry clothes.
So now a few months into the Nappy Ages - a new phase in our joint lives - I wanted to share some trade secrets. Firstly, if you are organised, it’s not as bad as it seems. In fact, modern nappies makes things easier. And secondly, if you can bear the cost, it’s worth investing in a good product. And it’s really easy to order in bulk online, either from Take-a-Lot or Dischem. Before I realised that, I wasted a lot of time wandering around half stocked pharmacies looking for the right products in the right sizes.
So - drumroll - may I recommend Tena Men Active Fit Pants for day time and the Dischem Softi Premium Adult range for night. My father has taken to them very well, and the fact that they are pull-ups means he can do the pulling up himself, making him less a victim of his own incontinence. We also put large (60cm by 90cm) linen savers on the bed, plastic side down, between the mattress saver and the sheets. The hope is that if leaks are small, the disposable linen savers can soak up excess liquid, without the whole bed getting wet, and that saves a load of washing. There are celebrations in our household when I go to his little apartment with breakfast to find him dry, and bright. Things are more challenging when his house smells like a hamster cage and I have to strip the bed and the man, and start again with new clothes and sheets. But with three sets of linen and a full drawer of fresh pyjama bottoms, I have both routines down to a fine art. It’s not quite origami as there are a number of moving parts in the process.
Large linen savers and blue pull-ups. The blue colour makes them seem more like underpants than diapers.
Another urine related challenge is the dreaded Urinary Tract Infection to which older people are particularly susceptible. I don’t know whether my father gets cramps when he has a UTI because he is a stoic and never complains. But I note that his speech gets more and more garbled until he is speaking a weird form of gibberish with all the intonation of a language but none of the known meaning. It is as if he is talking alien language. This collapse happens remarkably quickly. Then the big challenge is getting a wee sample out of him in order to get antibiotics fast. Even when he was less disoriented, it was an issue, because he would freeze up over the toilet bowl. My husband has had to take wee samples from him. We had one moment where he eventually captured the wee in a jam jar. My father held it up proudly and said “Look, All Gold.” If you don’t get the joke, All Gold was the brand of the jam which was once in the jar, all gold was now the colour of the wee inside the bottle.
The challenge of getting a urine sample from him today is huge, given his dementia and my difficulty in explaining what I need. I reckon it should be an Olympic sporting code because it takes daring, strategy, skill and patience. A friend advised me to buy a cheap plastic hand-held urinal which is so much easier than trying to hand-hold jam jars at just the right angle at the critical moment. The urinal fits snugly onto the hosepipe, so to speak, collects the wee without a splash, and it can then be handed over to the lab without anybody losing their composure. I really battled to find one of these, but finally did on Take-A-Lot much to my joy. I could have ululated.
Life-saving liquid - Earl Grey Tea
A daily focus is to keep my father hydrated to avoid him getting a UTI because it is so much pain to manage the wee sample drama; a UTI is bad for him, and it can be expensive and involve a trip to the doctor and antibiotics. He has never liked to drink much water, and takes teeny, tiny sips when encouraged. He used to say to us as children that water was for horses because he preferred wine and tea. Nowadays, I leave a glass of chocolate milk on his table at night for him to drink, just to keep his water table high. It’s about ensuring liquid goes in efficiently, and then the consequences of that managed with dignity.
It is World Alzheimer’s Month this September, when the world is encouraged to think about the challenges of dementia across the globe, and encourage awareness of Alzheimers. That’s something worth remembering.
copyright Marion Edmunds
Disclaimer: Please note that the adult nappy brands mentioned here work for me, but others might find different brands better. Please advise if you do.