Retired journalist and full-time carer for her husband, Geraldine Durrant, relays another story of twists and turns regarding her life as a carer…You can find the previous installments of Geraldine’s column here.
As the months went by and I learned to adjust our social expectations, I regarded a day with two medical appointments for Patrick with unparalleled excitement.
It was not exactly a day out of course, but it was close as we’d got in quite a while.
The first, at the Bladder and Bowel clinic, was one we had waited four months for – although what qualification other than double incontinence could possibly be required to be approved for free nappies was hard to imagine.
I know there are people who play the benefits system, but I am not convinced the black market in second-hand sanitary products is sufficiently buoyant to justify the lengthy gatekeeping.
But the nurse we saw was kindness itself and ten minutes later I felt we had won the jackpot with an allotment of three state-sponsored incontinence pads a day.
Since we could get through an expensive half-dozen on a bad day, these were a useful windfall and I wondered how to spend the spare cash, before deciding on gin…
Lots of gin…
The afternoon’s appointment had taken even longer to materialise.
We had waited three months for Patrick to get a “memory test” and had waited a further seven months for the results.
And the news, as I had expected, was not good.
Patrick had been diagnosed with Lewy Body Dementia, caused by a build-up of protein in the brain and characterised by a fairly rapid decline, hallucinations and delusions.
It often comes with a side-order of Parkinson’s-like characteristics and I could already see in Patrick’s slow shuffling gait shades of my father, who had suffered from Parkinson’s and Alzheimer’s.
I felt a momentary pang of sympathy for doctors Lewy, Alzheimer and Parkinson.
While most of us would like to be remembered for something, their names are forever associated with some of mankind’s ghastlier afflictions.
And while I know they say it doesn’t matter what anyone says about you as long as they spell your name correctly, I am not entirely convinced this is true – and in the case of poor Dr Alzheimer, I suspect even that small consolation is frequently denied him.
The dementia doctor was helpful but emphasised that her diagnosis was only “most likely” the cause of Patrick’s problems.
To be entirely sure she would have to carry out a post mortem, and while there had been moments, usually in the sleepless early hours, when I would cheerfully have sacrificed Patrick on the altar of medical science, I was willing to accept this caveat…
So – LBD it was.
And to think in happier and more innocent days, I thought this merely stood for little black dress…
It was barely 9am when Patrick had already been seen naked one morning by three different women to whom no formal introductions had been made
And it was a measure of how our lives had changed that their arrival in our bedroom had raised no scandalised eyebrows.
For the third morning in a row I have been woken up at 5am, not by the dawn chorus, but by Patrick, to find his night-bag less than half full, and his bed sodden.
And I had no idea why…
His catheter was in place and during the day had been working perfectly: but it seemed the moment he lay down the pee started backing up, so I had no alternative but to call the district nurses to see if they could work the necessary magic.
However I was worried, because the last time the catheter had been replaced – only three weeks before – it had been done in hospital under anaesthetic.
I had come to feel in recent months that we were always living on the brink of the next disaster and I dreaded the nurses telling me we had no alternative but to spend yet another long weary day waiting in Casualty.
But our luck was in…
Between them they managed to remove Patrick’s’ partially blocked catheter and get him plumbed back in.
And I just had time to put on a second load of laundry before Hilary turned up to give Patrick his shower and get him dressed.
This was a trial arranged by the hospital post his discharge, but if it proved helpful – and not too cripplingly expensive – I was considering making it a permanent arrangement.
After all how much gin can one small woman drink?
I did wonder how Patrick would react to this new regime, but he had become quite shameless in his old age and would obediently strip off for anyone who had the temerity to ask him.
However the downside was that the two-and-a-half hour window for the carer’s arrival made havoc of our morning routine – and Patrick was waking up early and anxious about precisely when his carer would come.
It was a question impossible to answer – but he nevertheless kept asking it.
Very, very often…