Journalist and children’s author Geraldine Durrant started her diary a year ago when her husband was diagnosed with cerebral atrophy.
More used to telling other people’s stories, she says writing it has helped get her head around their new lives.
But she decided to share it in a blog after realising that other carers might enjoy reading it too, “if only to recognise that we are none of us alone in our troubles.
JAMES has now been in hospital for ten days and I am feeling better than I have at any time – well at any time that is since he was last in hospital.
I have slept well and caught up with friends, and I feel an unfamiliar calmness as I go about my chores without the constant pressure of James’ anxious interruptions.
Even he notices I am cheerful and relaxed, and asks why.
“Well,” I say, “I have been getting some sleep while you are in here…”
“That’s good,” he says, “I wonder why you weren’t sleeping very well before…”
But if I am feeling better, it is apparent that James is still very poorly.
The deep-seated infection which put him in hospital was caused by the catheter which he has been using for the past year and which has been a menace to society from the moment it was inserted.
It appears that it has not only eroded his urethra, but also worn away the neck of his bladder where the balloon which keeps it in place is no longer sited properly.
As a result it has not been draining as fast or efficiently as it should and the build-up of stale urine in his bladder has been the source of repeated infections.
It has taken intra venous antibiotics to clear it up this time, but it is all too apparent that this latest bout of infection has taken its toll.
James – already too thin – has probably lost 10lbs over the past three weeks: he is is bony and weak, and it is possible to close a thumb and forefinger around his wrists.
A zimmer frame by his bed stands silent witness to the fact that he can now only shuffle slowly. And the occupational therapist tells me he has no idea if James can still climb stairs – but looking at the huddled little figure curled up in bed, it seems unlikely.
What is more certain is that our glass-walled shower at home will now represent a very clear and present danger of him falling – but how will I get him in and out of a bath? No-one can tell me…
James, who has twisted his glasses into a tangled heap of broken wire and lenses, is also more than usually confused.
He does at least know me and our son when we visit, but he has no idea where he is or why, and he is troubled by “problems at work”.
“What sort of problems?” I ask him, trying to gain some insight into the muddle that is his mind.
“Well you know what the Ministry of Defence is like,” he says “and then there’s the new Wing Commander who has just started…”
His brow furrows with the effort of trying to remember his imaginary day and I realise again how utterly exhausting it must be marshalling thoughts that are as scattered as herded cats.
All of which brings us to the $50,000 question – what happens now?
I have always said I will keep James at home as long as I am physically able to do so, and as long as he is getting something out of it.
But it is obvious we have reached a crossroads and there are some difficult decisions to be made.
“You’ve got three options,” I am told by Occupational Therapy.
“James can be discharged straight into long-term care…” and my heart contracts at what seems like the ultimate betrayal.
“Or he can come home and we can try to put equipment into place which might help you manage him a bit longer.
“Or we can discharge him to a dementia rehabilitation unit where they will assess him and we can decide from there…”
With a sinking heart I go for option three.
I was barely coping with James before he went into hospital and I am unwilling to accept him home until I know exactly what his condition is now, and whether it will still be safe – or even possible – to care for him alone again.
He has already had one fall in the hospital where there are willing teams of people to get him back up: at home there is merely an arthritic granny with two replacement joints.
So I tell him what is going to happen, and in a rare moment of heart-breaking lucidity he says: “I just want what is best for you…”
James has always wanted what is best for me and as I bend over to drop a farewell kiss on his forehead he says “that’s not a proper kiss” and catches me gently on the lips…
Then feeling like Judas, I slink away home and leave him behind…