Friday, 25 June 2021

Your letters...

Living nightmare

Sir, – I write further to the tragically moving letters from Edward Harding and John Thornley (Standard, December 9 and 16) and hope that one day people in the United Kingdom will be given the option of choosing a humane assisted death in their own home surrounded by loved ones.

For those who object to such a situation, especially the Members of Parliament who abstained from or voted against the Assisted Dying Bill, I would welcome them to visit the living nightmare that my father’s life has become now that frontotemporal dementia has rendered him unable to live alone.

As my brother and I already care for our mother and my wife, we are unable to additionally care for our father, so we rely on the state to look after him.

Sadly, the care system is significantly flawed and my father now temporarily resides at Prospect Park Hospital in Tilehurst, where he has suffered emotional trauma, assault and injuries such as a broken rib.

Local nursing homes appear unable to provide suitable care for a relatively young and active man with dementia, so he is now faced with being transferred to a secure hospital, a three-hour round trip away from my brother and me, to see out his final days in a lonely, unfamiliar and no doubt frightening place due to his impaired cognition.

While my father is doubly incontinent and losing the capability to do even simple tasks, such as sit in a seat when encouraged, he retains sufficient comprehension to describe where he is as a “prison”.

Doctors experiment with various medication for better or worse at times and his room is little better than a prison cell.

Due to the risk of disruption or violence from other dementia sufferers he is sometimes locked in his room while he lacks the capacity to unlock the door from the inside.

I can only describe his current existence as a living nightmare and I suspect that had he known what his life would become he would have considered assisted death.

That said, he never mentioned assisted death after diagnosis so he will now be cared for as best as society seems able to offer at present — care which one day will be seen as primitive, even barbaric, and he will no doubt die a similarly harrowing death as his father, who suffered from Parkinson’s disease.

While I cannot be certain, I recognise various similarities in myself to my father at my age and I suspect I share the genetic flaw that will lead to a neurological disorder.

With the law as it stands, to avoid a further repetition of this living nightmare, my wife, who has severe MS, and I will have to unnecessarily shorten our lives to travel to Dignitas together while I am physically and mentally able to get us there.

Frustratingly, this will be long before we might otherwise want should assisted dying be an option for us together at home in the United Kingdom. — Yours faithfully,

Mark Randall

Henley

I wish to die with dignity

Sir, — I have read both John Thornley’s letter on end of life choice (Standard, December 16) and a letter from John Howell MP thanking me for mine in which I asked him to support assisted dying.

It appears that he has not yet made up his mind because “the circumstances in which permission is given to end life is fraught with uncertainty”.

So are many issues on which a reasoned response needs to be made.

I am near the end of my life and have done my best to ensure that my wishes willbe carried out.

I have made a living will which I have discussed with my doctor. The surgery has a copy, as have my children.

I have no wish to be kept officiously alive when I have no quality of life left.

To allow someone to die is not, as some say, playing God. Were it left to God alone the death rate would soar.

I wish to die with dignity and have more faith in the medical profession than many of those opposing the Bill appear to have.

I entirely agree with Mr Thornley — we do deserve a choice at the end of our lives. — Yours faithfully,

Ann Law

Binfield Heath

My sympathy for carers

Sir, — I was saddened to note that the only letter in reply to Edward Harding’s moving account of caring for his wife who has dementia was a plea for easier access to euthanasia.

I would like to think that what Mr Harding is seeking is support in his demanding role as a carer and that Bluebells or similar centres for day care are kept open.

Kind neighbours in the friendly village of Shiplake are, I am sure, glad to offer comfort and support to them both if this is what they would like.

If sufferers can be helped to be calm and contented, perhaps with soft music, and the carer can have time away on his own periodically, this may make life a little easier.

I send Mr Harding sympathy and hopes for a more optimistic future. — Yours faithfully,

Christine Bland

Caversham

Support and help at hand

Sir, — While for many this time of year is full of excitement, new research by the Alzheimer’s Society has found that more than half of people affected by dementia find Christmas to be the most isolating time of the year.

Many of those surveyed said they see their friends and family less often over the Christmas period than they did before their dementia
diagnosis.

Despite the challenges, there are things we can do to make Christmas more enjoyable for people with dementia.

This includes seeing friends and family more frequently and keeping to their daily routine as much as possible, such as set meal times.

To support families affected by dementia this time of year, the Alzheimer’s Society has prepared guidance, which is available at www.alzheimers.
org.uk/supportatchristmas

Simple things such as spreading out family visits and designating one room in the house a “quiet room”, where the person with dementia can relax without loud noise, can help to minimise confusion or distress.

People affected by dementia have told us that sharing their experiences would help and Talking Point, our online discussion forum, is a place where you can ask for advice, share information, join in discussions and feel supported.

The festive season doesn’t have to be the loneliest time of the year for people affected by dementia. The Alzheimer’s Society is here to help and support. — Yours faithfully,

Chris Wyatt

Regional operations manager (South-East), Alzheimer’s Society, Abingdon

Fantastic volunteers

Sir, — I would like to thank the FISH community volunteer scheme for the tremendous support it gives to Club SC, our youth club in Sonning Common.

FISH is an acronym for Friends in Sickness and in Health. It is a charity run exclusively by volunteers. It has a minibus available for community groups, which takes the elderly, infirm and youth groups on shopping and leisure trips.

It is also a network of volunteer drivers who give their time to transport the elderly and infirm to hospital, or doctor or dentist appointments in their own vehicles.

These volunteer drivers are quite extraordinarily generous with their time.

Last year, Club SC had the opportunity to go to a midnight ice skating event run by Oxfordshire Youth entirely for their member youth clubs in the county.

This necessitated a driver willing to give up time late on a Sunday evening a few days before Christmas, drive a dozen or so lively youngsters and their three accompanying adults to the Oxford ice rink and sit about for a couple of hours with Christmas music blaring and noisy, bright-eyed and damp children stumbling about the observation room in their skates, sloshing around their hot chocolate and biscuits, then driving them back, arriving at around 2am.

Amazingly, a FISH volunteer has agreed to do the same trip again this year!

FISH is a volunteer group enterprise and each volunteer gives the type of help which fits best with their own commitments.

Some spend a morning helping to man the FISH office at Kidmore End turn, where Kennylands Road joins Wood Lane. Some opt to drive a patient to a routine hospital appointment in their own car. Some volunteer to drive the minibus.

I would like to pay tribute to and thank all the volunteers who make Sonning Common and the surrounding villages such a special community.

May I also include all volunteers who help to run the youth club?

I wish all volunteers a Merry Christmas and include those of you who would like to volunteer in some capacity but who have not yet tiptoed over the threshold.

You will be so welcome in whatever organisation or capacity you choose to help. You will also find many friends. — Yours faithfully,

Carol Viney

Club SC youth club management committee, Sonning Common

Thanks from Nottakwire

Sir, — May we, through your letters page, give a big “thank you” to all our singers, helpers and supporters for doing such a fine job on Saturday, December 10 at Nottakwire’s Christmas carols event in Sonning Common village hall?

We had a full hall and the audience joined in with our 70 singers to sing traditional carols.

In addition, the singing group performed a programme of new, seasonal items that was very much enjoyed.

Admission was free but with a well-supported wine raffle, seasonal refreshments and a retiring collection, we were pleased to take £430.

An additional sum of £140 was raised by the Notts Group of singers, who are part of Nottakwire but also work independently and alongside the main group.

An entertainment of a high standard was well received at Badgemore Park Golf Club by lunch guests on December 18 and a further £140 was generously donated by those guests.

As a result of both these occasions, Nottakwire has been happy to make a £500 donation to Embrace the Middle East, a Christian charity that we have supported for the last three years.

Embrace has more than 160 years’ experience and works alongside local Christian charities, helping people of all faiths and none, in the Middle East to free themselves from a life of poverty and injustice.

The charity’s aim is to bring lasting change to the Middle East through education, healthcare and community development projects.

In addition, we will make a gift of £100 to Club SC, the village youth club, which we continue to support.

In addition to our Christmas event each year, we hold a summer fund-raiser.

The proceeds of this are divided between various groups in Sonning Common, to support the work they do for residents.

We wish to thank all those who regularly support Nottakwire’s efforts, both to entertain and to support others in our village.

Several of our members travel in from Henley and surrounding villages and we are happy to send out further information to anyone who is interested in learning more about us.

Call 0118 972 1248 or email margaret.moola@btinternet.
com — Yours faithfully,

Margaret Moola and Elaine Williams

Nottakwire founders and directors, Sedgefield Close, Sonning Common

Record year for appeal

Sir, — This year’s Poppy Appeal in Shiplake, Binfield Heath, Dunsden and Playhatch broke all previous records for the area.

A marvellous total of £9,135 was raised thanks to the dedicated team of door-to-door collectors, the schools, pubs and shops.

I would like to thank everyone who contributed to this very worthwhile cause with both their time and money. Thank you very much indeed. — Yours faithfully,

Rosemary Jones

Honorary Poppy Appeal organiser, Shiplake and
Dunsden branch, the Royal British Legion

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