Dementia Support Line
Real stories
Care home reunion inspires new dementia poem, ‘Out of lockdown’
Tony's wife, Sheila, has Alzheimer's disease and lives in residential care. They have been separated for most of the year because of the coronavirus pandemic. We are delighted to share Tony's latest poem inspired by their care home reunion.
My poem, Out of Lockdown, was inspired by a whole series of happy events over the last few days, not least the long-awaited ‘hug’.
Out of Lockdown
by Tony Ward
Once more the Winter Solstice,
shortest day, longest night,
no Christmas cheer, no end in sight,
but there, amid the gloom,
appeared the Star of Bethlehem,
planets conjoined - new light.
The fast-flow test, the half-hour wait,
the hoped-for negative.
Out of lockdown, no Covid screen,
two lives re-joined, new light.
Out the door, into the car, but …
“Who is this gentleman?”
Did my wife no longer know me?
Her laugh, her hug, gave answer.
Too overcast to see the Star,
a tour of Christmas lights.
Then come the Spring, if Covid-clear,
a visit to the park,
once more, we’ll feed the birds - doves, gulls,
pigeons, ducks, perhaps a swan.
Out of lockdown, at last, a new
normal, new memories,
soon lost, no matter. Each moment
lived afresh. Golden days.
I completed this illustrated poem the day before Christmas Eve. On that same day new government guidelines for care homes cancelled further visits. However, this was not the end of our ‘happy events’, despite Sussex now being in Tier 4.
Up to then, telephone calls with Sheila had been largely one-sided, but deprived of our newfound ‘hug-visits’, calls have significantly improved.
As you would expect, some days are better than others, but she now makes a big effort to ‘come to life’ over the phone.
On Christmas Day, we had our best telephone session since she entered the home. I played her a recorded Christmas message from our son’s family to which she responded – not stuck for words.
I then related a funny experience with our rescue dog, Rino. He had been sent a ‘Dog Advent Calendar’, which we had been opening each day in December. In truth, I did the opening as he was too fumble-pawed.
Up to Christmas Eve, each day was just a few pea-sized turkey or venison pieces, enjoyed but soon gone.
But on Christmas Day, Rino watched as I opened a large packet of turkey sticks, each about six inches long. Not content with one, I gave him a second then put the rest away to last to 12th night.
Rino then sat staring at me for a large part of the afternoon - 'What about the rest!'
It was good to hear Sheila laughing.
If there is a message in this, it is that from The Queen’s Speech on Christmas Day:
' – even on the darkest nights – there is hope in the new dawn.'
Read Tony's previous blog post from June
Following their enforced separation, Tony wrote about how the coronavirus lockdown affected them and shared his poem titled Painted Lady Summer.
William
saysI can recognise scarcely any common ground with this experience.
Both my parents have very advanced dementia. Neither can speak intelligible language, neither understands even the simplest language spoken to them. Their closest family have become utter strangers to them. Both are incontinent, and incapable of even getting themselves a drink of water, let alone preparing meals or doing any other kind of house work.
They are still living in their own home. My wife and myself live with them in order to provide the necessary round-the-clock care.
Whilst we have the satisfaction of knowing they are getting the best possible care, the workload and strain on myself and my wife is incalculable. We have become human automata, with scarcely a life of our own, whose main purpose for being here seems to be to minister to my parents' relentless and all-encompassing needs.
I am writing this in the middle of the night after an argument with my wife. Before we had this role, we literally never argued during fifteen years of marriage. Now we do argue with increasing frequency, though even more frequently we simply get angry or upset at the new lows of dysfunctionality my parents seem to reach every day, e.g. my mother wetting the bed now almost nightly, in spite of wearing nappies, or carrying faeces round in their pockets, or declining to walk or stand or sit, or eat or drink, or be washed or dressed, when their lives and our sanity depend on their compliance.
Perhaps the most desolating aspect of our experience is not knowing anyone who is going through quite what we are going through, caring as we are for two advanced dementia patients simultaneously in their own home, and trying, still, to hold down demanding jobs and provide for our own present and our own futures, whilst no longer knowing whether those futures will be spent with or without one other.
If you had mentioned dementia to me twenty years ago I might have brushed it off as something rather sad but ultimately quite straightforward to cope with.
It isn't. It is something frightful, devastating, exhausting and merciless that can irreparably damage not just the lives of those afflicted by it but the lives of those who find themselves trying, out of their sense of love and duty, but also in quiet desperation and against unconquerable odds, to alleviate it.
Denise Canney
saysYou really hit the nail on the head im caring for my father like that 24/7 its soul destroying no end in sight you put into words much better then i can
Nec
saysTony’s story is inspiring, simply put, with care and love as companions his poems speak to all who might care to listen.