There is a vacant look in his glazed-over eyes that leads me to wonder a worrying, recurring thought: ‘does he really still know who I am’?
During the course of a visit to his care home my grandad, Brian Yallop, currently shows me enough for me to leave safe in the knowledge he did manage to find the answer.
But for how long is a different matter.
For winter is coming in terms of my grandad’s dementia. And in the former teacher, Ron, who shares his condition at Davers Court in Bury St Edmunds, we are left in no doubt as a family that the storm lies not far ahead.
Considering Dementia with Lewy Bodies (DLB) – also known as Lewy Body Disease – is quoted as the second most frequent cause of age-related dementia, affecting at least five per cent of over-85s, it is surprising how little is known about it.
On being given the diagnosis just two years ago, and I might add only after my grandad repeatedly took himself to the doctors knowing something was not right, there was not even a leaflet to take home to help my gran, Pearl, digest the words that would change her life forever.
She was told to go on the internet for more information, yet she had pointed out she did not even have access to it, so cue worried family members Googling and taking print outs round.
The Government was prepared to pay her to care for him, yet left her with no information or training in her most demanding role yet.
You may have heard of it when LBD shot to prominence in the media in-conjunction with the name ‘Robin Williams’. The loveable actor found the ever rocky road that lay ahead after his diagnosis too much to bear, seemingly taking his life for this reason. But, I believe it is more likely it was for his family that he did it, to save their suffering.
So what is this condition? And why is it so bad? Essentially, it can be thought of as a mix of Alzheimer’s and Parkinson’s disease. And a quick and proper diagnosis, though hard to make, is essential as medication used to treat Alzheimer’s will only exacerbate the symptoms, largely characterised by very vivid hallucinations, often involving animals.
Memory loss is also a problem and can blur the lines between the two contrasting conditions, while the mobility issues can come later. My grandad now has to use a wheelchair if we take him out of the care home – something a very proud man was so resistant to as recently back as in the spring.
We are now on a journey as a family that will lead to a dark and very long hour. But I decided to write this article, with the full backing of my gran, so some light may emerge from a desperate situation in our lives.
There is so much support and research advances with Alzheimer’s, but so little with LBD. So when I heard of some new research into LBD going on down the road at Cambridge, and the need for more funding, I did hope the army of readers of the Free Press may be able to answer this admittedly emotional cry for help.
‘The Man on The Moon’ John Lewis advert had me holding back tears as I instantly drew a comparison between the elderly man stranded alone at Christmas on another planet to my grandad. We will not leave him alone on December 25, for sure, but if he is actually on the same planet as us is another matter entirely.
The man I call ‘the best grandad in the world’ you would know as the jokey, smiley Brian, of the Howard Estate. A bricklayer by trade, he had a hand in restoring many of west Suffolk’s most celebrated buildings: there is a plaque bearing his name in the Unitarian Meeting House in Churchgate Street in his home town of Bury St Edmunds, while outside his care home bedroom is a cutting from this newspaper of another builder and himself after restoring the roof on St Peter’s and St Paul’s Church in Lavenham. But perhaps his most proud achievement is the complete restoration of a jewel in the National Trust’s crown that many of you will have enjoyed visiting; Wimpole Hall.
Aside from his stamps on the buildings we admire though, he will leave another legacy.
His vision to set up an over-60s club to wile away his retirement hours came to fruition on the Howard Estate in May 2003, with the help of his friend Ernie Broom (who this year was awarded an BEM for services to the community). Thanks to that thriving group we now have an Asda superstore in the town, a decent bus service to it, a pharmacy for the estate’s residents and an affordable housing block on the site of a burnt-out public house. After living in a council house, he kept up his role on the Havebury Housing Partnership Residents’ Forum until he had to argue his illness made him no longer any use to them. They really wanted him to stay on.
He was, and is, such a selfless man and always saw the good in people. At the football he would strike up conversations with whoever sat the other side of him. He was not a rich man, but even though he did not have a lot, he gave so much.
He began my life-long passion of supporting Ipswich Town and I had to explain to people at university that the man who drove from Suffolk to pick me up at the end of term time was not actually my father. Though he was, is, certainly a close second one.
I am so sad we will never see another game together.
Trying to talk to him about the football now is almost a lost cause. It was one of the first things to die in him once a second bout of pneumonia in the space of a month from Easter this year led to the very difficult decision to transfer him to Davers Court in Bury.
In a strange hospital environment his LBD very quickly deteriorated and my gran had to succumb to her limitations as an untrained carer in a house no longer fit for his needs.
This all came after a painful period 12 months previously that we would all rather forget; when his medication was yet to be sorted properly and led to him having to be taken to the nearest psychiatric hospital. Unfortunately a lack of beds meant this was an hour away, in Norwich.
For six weeks we made that journey with my gran, who does not drive. But eventually they got things right, with all the nurses commenting what a wonderful man he clearly was, beneath a terrible condition.
One of my memories in that hospital was when we took him for a walk in the courtyard. Another patient came out and immediately my grandad went over to them and began helping and supporting them. You would not have known he was not a nurse.
In our own way, we are all trying to do something as a family to prevent others from going through the same pain as us. Whether that is achievable, none of us know. But we have to try.
After holding a cake stall, donating proceeds of a birthday bar and my sister doing us proud running the London Marathon, I now want to, with your help, direct some money straight into what I hope will make a real, telling change for the better: cutting-edge research.
There are too many men and women left stranded on the moon right now, and the number will only get worse.
Let’s do what we can to keep them longer, at least, back here on Earth with us.
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