Suffering in silence: UTIs and the quiet crisis in elder health

On a miserable, bitter Sunday evening, I called an ambulance for Mum.

Normally we’d have been sitting in her cosy lounge with the pets , trays on laps, eating dinner in front of Antiques Roadshow. Mum, refusing to put her “ears” in, would slide the volume to 40 and pick at one of hundreds of meals I’d dutifully – but, after 4 years of live-in care, often resentfully – cooked.

But this day, Mum didn’t get up for breakfast. She stayed curled up in bed, wearing the clothes she categorically refused to change out of the night before. I tried to cheer her up with cups of tea and honey toast. I gave her Panadols and sat with her, helped her out of bed to go to the loo, coaxed her to change – albeit reluctantly – her sodden pull-ups. She had a headache, a tummy ache and – even accounting for the deep dementia that sometimes made her say, see and do odd things – she wasn’t herself.

Then she said she was finding it hard to breathe.

The secret problem

When I spoke to the operator, they told me there was a Code White – which, in Adelaide, means the emergency departments are overflowing. When the overstretched ambos arrived about an hour later they were, as they always are, so respectful and kind. As one of them tucked Mum onto the barouche, her partner whispered, “I think your mum has a UTI – it smells kind funky down there. Make sure they test for it.”

We were ramped for 4 hours at Emergency. Once inside, Mum had all kinds of tests. I collared anyone who looked remotely medical to check for a UTI. It wasn’t until 5 am that a tired nurse managed to get Mum’s pee in a jar and confirmed a UTI. A raging one. We taxied home with antibiotics in time for a late breakfast.

The rock stars of geriatric ailments – Heart attack! Stroke! Cancer! Falls! – get all the attention. Of course they should: they are awful and debilitating and will get you in the end. But UTIs are everywhere, moping around in their dank droves, lurking outside the limelight, almost invisible.

Why aren’t we talking about UTIs?

That is, until you snatch a mental health moment and strike up a random conversation with your hairdresser or your checkout person or the lady with the yorkie at the dog park about dementia, incontinence, recurring UTIs and sepsis. Those frequent, conniving, insidious bedfellows.

Every. Single. Person (usually a woman of a certain age) has a horror UTI story about the mum or grandma or mother-in-law in residential care or at home. We commiserate and complain – kindred spirits repeating a rhetorical mantra. How come no one else ever seems to talk about UTIs and how prevalent they are?

Are they too mundane? Stinky? Inevitable? Is it just a woman thing (so therefore not so much of a thing)? Why can’t we buy proper medications for them over the counter? Why won’t the government approve the vaccine and put it on the PBS?

Are aged care people or agency helpers trained to recognise UTIs or routinely test for them? Why are dipstick pee tests and showers chucked in the too-hard basket? Is staff turnover too high for health care workers to know their person well enough to recognise that they’re in pain or out of sorts? How can they neglect residents in saturated pull-ups for hours because the person is being “difficult” so it’s the next shift that has to “deal” with them? And why should Christmas mean “we’re short-staffed”, so basic hygiene also takes a holiday?

Maybe daughters understand the problem better because UTIs (and the incontinence that can precede or follow them) are par for the course for women at every age: one in 2 women will get a UTI in their lifetime.[i] 10% of women 65+ report having had a UTI in the past year, and this group accounts for much of the healthcare burden linked to UTIs and kidney infections.[ii] In comparison, just one in 20 men will get one in their lifetime.[iii]

NB: I never once met a stay-at-home bloke at the dog park who was caring for his old mum to discuss this with – to be fair I’m sure there are some. But it does seem to be quite gendered in that way.

Living with UTIs

After that first Sunday scare, I came to recognise when Mum was suffering a UTI and manage it before it got to the ambulance stage. It wasn’t easy to help her. In dementia, her admirable tenacity hardened into unyielding stubbornness. Born at the outbreak of World War II in parochial Tasmania, she was always uncomfortable talking about intimate bodily functions.

As her dementia inexorably progressed, Mum’s natural modesty transformed into an emphatic refusal to undress or shower or allow sponge baths. We couldn’t even wash her hair without protest. Even experienced helpers, one a registered nurse Mum adored, couldn’t coax her to change her sanitary pants as often as was hygienic. Doctor’s appointments for her incontinence and recurring UTIs became hours-long production numbers she and I both dreaded.

When we couldn’t keep her safe at home anymore, Mum went into care, and we made a real song and dance about the UTIs. Lots of solicitous lip service but deaf ears, as it turns out. It was a posh place, yet there seemed no protocol or plan to deal with what must be a massive problem in every single aged care facility across the land. At least, if there was a protocol or plan, no-one sat us down and discussed it with us.

Can we raise UTI awareness?

But there’s hope. Recent publicity about endometriosis has started to normalise discussion about it even, it seems, with the other 50% of the population - I saw Shirvo say “endo” on Sunrise one morning not long ago. That’s something.

Surely it’s UTI’s turn to get some kind of jingly, sticky, cool awareness campaign that earworms its way into our day-to-day? Failing that, what about a simple kit, sent to every older person, or to those on a carer’s allowance, like the Department of Health does with the bowel cancer screening test?

There’d be pee sticks, a reusable plastic container to dip the sticks into if you can’t catch pee mid-flow, simple steps for doing and reviewing the test, what to look out for symptoms-wise, and ways to nip the UTI in the bud.

Perhaps kits could go out with incontinence products ordered by people at home through their care provider. Maybe those pants themselves could change colour if there’s an infection present.

Maybe we could workshop something on Sunrise. With Shirvo.

UTIs are a serious issue

After 6 months at the care home, Mum died in hospital. They’d admitted her, on yet another momentous Sunday, because she was almost unresponsive. Her demise was quick, but we all managed to be there, everyone driving from all over. We sang “You are my sunshine” (her favourite), held her hands and talked softly amongst ourselves around her bed for 2 days.

Mum’s official cause of death? “Urinary tract infection complicating hydronephrosis on a background of congestive cardiac failure and mixed Alzheimer’s and vascular dementia”. Something as unspoken and unremarkable as a UTI made it onto something as final, and unequivocal, as her death certificate.

I don’t want them to be the last words written about her. So here we are.

See your doctor as soon as possible if you have any symptoms of a UTI. You can also go to the Healthdirect website, or call their 1800 022 222 for free instant health advice anytime, anywhere in Australia. If it is an emergency contact 000.