In her second instalment of ‘Midsummer madness,’ blogger Geraldine Durrant reflects upon the early days of her husband’s dementia diagnosis and the struggle to get support…
I am not sure what I expected to happen after my husband Patrick’s diagnosis with dementia 18 months ago, but what I didn’t expect was absolutely nothing…
There was no phone call from the doctor inviting us in to talk through what it meant. There was no visit from a district nurse to see how we were coping.
Just an utter silence which was as frightening as it was deafening.
And once it became evident no cavalry would be coming over the hill any time soon, I felt we had simply been abandoned to our unhappy fate.
I understood of course there is no cure for dementia, but surely there was some advice as to how we might cope with Patrick’s deteriorating mental health?
When it became apparent I would have to ferret out any available support for myself I consulted a friend who had herself been a long term carer.
“Oh, you’ll get lots of leaflets,” she advised wryly, “but no actual help…”
That first fortnight passed in a blur with a slew of tests to confirm Patrick’s problems had no physical cause, and I spent it coaxing a reluctant husband out of the house, or hanging on the phone.
An appointment faithfully promised by the hospital failed to materialise, so with catheter supplies running alarmingly low, and no idea how one might go about replenishing them, I rang the urology department.
But as often as I contacted the switchboard – and it was very often – I was passed from one department to another.
A phone, somewhere, would ring, but no-one would answer it: or if they did pick up, they had never heard of Patrick or his plumbing.
Then the line would go dead and I was back to square one.
After more than an hour of this Kafka-esque run-around I rang the switchboard again and simply burst into tears.
I’m not sure who was more surprised by this uncharacteristic lapse, me or the operator, but having heard my plea for help so many times already she was fully au fait with my problem and promised she would find someone to help me.
Which she did…and a kindly nurse rang to admit Patrick’s notes had been lost and there was no record he had ever been in hospital.
It was a first taste of what was to come many times in the following months.
But it taught me the most valuable lesson of the past year.
When all else fails – reason, common-sense, an appeal to humanity – don’t be too proud to cry…
Eventually someone will take pity on you…
A routine blood test took an entire morning after we were despatched to the hospital with the wrong patient’s notes (sorry for any inconvenience Mr Smith); another morning was spent filling in a fiendishly long and repetitive online form for Attendance Allowance, which disappeared as I ticked the last box; while my application for a modest rebate on our Rates also required, oddly, a photograph of the bathroom.
I found myself wondering if it looked sufficiently “disabled-friendly” to qualify. There was a raised lavatory seat certainly, and an extra handrail visible in the shower, but was this enough?
I stood the catheter night-stand in plain view and for good measure added a stack of nappies and a pee-bottle to the cistern, before stepping back to admire my handiwork.
The House Doctor, I reflected, would have been proud…
But if those first days were exhausting, the nights were a killer.
Patrick’s mental health had taken a nose-dive, as if his diagnosis had flipped a switch in his brain.
So 45 years after I had last brought a newborn home, I was back to sleepless nights, and nappies – only this time round I was in my seventies with two replacement joints and no energy for motherhood…
And it didn’t take long to realise I am no Mother Teresa.
A natural optimist whose default mode is cheerful, there was a time when I could have given Pollyanna a run for her money.
But that was before Patrick started roaming around the house at all hours of the night.
I had already decamped exhausted to a spare room, desperate for some quiet headspace at the end of the day, but he would wander in and demand to be up and dressed several times a night.
No appeal to the exterior moonlight would deflect or deter him – if he was up, so should I be.
I lasted a week.
And then I lost both my temper and the plot, and unable to take anymore argument about whether it was midnight or morning I simply shouted at him to get back into the bloody bed…
Which he did, albeit with the affronted air of a man who has been very much taken advantage of.
Afterwards I lay in my own bed shaking with anger and shame, and listened as Patrick shouted encouragingly every few minutes that he really WAS going to sleep now.
By dawn I admitted defeat, and realised we would have to have The Talk.
I had so far evaded discussing his actual diagnosis, speaking only of the confusion and memory loss of which he was aware.
So I sat on the bed next to him, took his hand in mine and for the first time used the “d” word – dementia…
Geraldine Durrant is a retired journalist, feature writer and children’s author who – since her husband was diagnosed with dementia a year ago – has kept a diary about her experiences as his carer. We have the privilege of publishing Geraldine’s incredibly personal story on our blog every Saturday, so keep your eye out for more on this series in the coming weeks.
If what Geraldine has written here resonates with you in some way, please do leave a comment to let her know.