ALZHEIMER’S: A touching tribute to seeing a friend with the debilitating disease

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A petition calling for a halt to plans to put the care of more than 40 patients with severe and complex forms of Alzheimer’s and dementia out to tender has nearly 800 signatures and supporters believe it will top a 1,000.

A petition calling for a halt to plans to put the care of more than 40 patients with severe and complex forms of Alzheimer’s and dementia out to tender has nearly 800 signatures and supporters believe it will top a 1,000.

Relatives and friends of the patients, now being cared for at Birch Avenue Home in Chapeltown, have launched the on-line petition asking the Sheffield Clinical Commissioning Group to put the plans on hold for six months to give time for a range of other options for the home’s future to be considered.

The first name on the petition is that of former MP, Helen Jackson, who opened the home in 1994 and Lord David Blunkett is also backing the campaign.

“Birch Avenue provides a marvellous service for the most vulnerable people in our community and, at a time when there is a growing demand and a crisis in the provision of all forms of social care, it seems perverse to put the current level of care at risk,” she said.

One of the campaigners, Sue Harding, said: “ This needs to be seen in the context of the wider strategy in Sheffield for the care of people with severe behavioural problems as a result of dementia.

“We’re not talking about all those poor souls suffering from dementia. We are talking about the minority who need most help because of the severity of their condition. They need the specialist help Birch Avenue provides. Anything which puts the level of care there at risk would not only harm current patients but create problems for others who will need its help in future.”

“We have already seen the threatened closure of Hurlfield View, which was part of the provision for patients with dementia, and fear that this decision to put the Birch Avenue contract out to tender could be the thin end of the wedge.”

The campaigners want more detailed consulation both with relatives or with the current management and staff and other relevant groups.

“We understand the problems the Trust are facing but see no evidence that they have considered any other option and feel they should have shared the problem with all the relevant stakeholders before rushing such a crucial decision.”

The existing contract will be terminated in May.

Birch Avenue is funded by the Sheffield Clinical Commissioning Group but run by the Sheffield NHS Health and Social Care Trust through a contract with the South Yorkshire Housing Association. That contract is being put out to tender because there have since been increases in the level of staffing which were not accounted for financially when it was agreed.

Here is a personal and touching memoir of watching someone suffering from Alzheimer’s.

To watch the slow decay of a dear friend, the disappearance of the clear mind and sharp wit, the fading of a personality, which has given so much, is one of life’s toughest experiences – not least because there is always the knowledge that this might happen to you.

But if Alzheimer’s develops slowly as it did in John’s case, you adjust by degrees to the person he is becoming and take pleasure in the occasional moments when the glimpses of the man you once knew pop thorugh the fog of his mind.

There was even a perverse enjoyment of the simple relationship that developed – simple because John became childlike at one point – amenable to every suggestion and easy to please and entertain.

But that did not last. As the illness bites, the pain begins. The confusion breeds fear; even the limited understanding of what the world is about begins to fade and you are confronted by an unmanageable distress.

His wife had been finally been forced to find a care home for him – for his own safety. His mind had been shrinking at an accelerating rate over the previous year. His speech had become a stuttering stream of consciousness with little discernible meaning. Just occasionally, a thought broke through the miasma of words and a conversation became possible.

We still wenty for walks but the distress was surfacing more often and it can eventually turn into a paranoia.

That happened to John. The pain of seeing him cry with frustration at his inability to make sense of anything, will stay with me for a long time; the shock when that frustration turned to fury – a fury directed at me was harder to take than anything that had happened before.

He had not always understood where we were going; he has occasionally walked off while I was queueing for the cup of tea he wanted; he had not always been there but he had known and trusted me.

No longer.

John’s illness now made him unmanageable in the private care home and he was referred to an NHS home in Grenoside for assessment. From there he was transferred to Birch Avenue where they have managed to nurse him back into an equilibrium of sorts.

He seems, now, to be content to accept the world as it is; he has stopped trying to understand what is going on around him and the care he is receiving at Birch Avenue reassures him and reminds him, continually, that he is safe now – the paranoia has gone and what is left of his once bright intelligence can rest easy.

I shall always be grateful to the staff at Birch Avenue for John’s new found peace of mind. I fear he will not find it anywhere else.

* To find the petition visit https://www.change.org/. For more information contact on Sue Harding on 07921255183.