Dementia Support Line
We are the storm: The power of a shared voice
Nigel Hullah, a former human rights lawyer who now has dementia, wants everyone affected by the condition to have their say.
Read this story in Welsh
‘I think the time has come to make a real political statement over dementia – to make MPs and ministers a little bit afraid of us,’ says Nigel Hullah, 65, who has been living with the condition for six years.
A former human rights lawyer from Cardiff, Nigel wants people affected by dementia to unite to demand change in how others see and support them.
Press the orange play button to hear this story in Nigel's own words:
Lost hours
Nigel, who now lives in Swansea, became aware he had a problem that needed to be addressed when he ‘lost’ hours from his day. He was working for a charity at the time, in a role that involved early morning starts.
‘I’d put the news on at 5.30am and the next thing I knew it was quarter to six, quarter to seven. Then it was four in the afternoon and I’d have no recollection of that time loss,’ he says.
Following a ‘tortuous four years of pre-diagnostic rigmarole’, Nigel was diagnosed aged 59 with posterior cortical atrophy (PCA), a rarer form of dementia, in 2012.
‘I now have to factor in an extra hour, in case I wake up and something’s gone missing from my mind again,’ he says.
‘I look at the coffee machine and think, “How does that work?” Or I look at my shoes and wonder how my laces work. No two days are exactly the same.’
Lesser person
Nigel found his diagnosis ‘truly shocking’, but was more disturbed by how society now viewed and treated him.
‘Everybody saw me through the prism of dementia – I stopped being a person,’ he says.
‘I felt my human rights had been taken away from me. Banks, statutory bodies and justice departments all felt I was a lesser person because of the presence of dementia. That made me quite angry.’
‘Everybody saw me through the prism of dementia – I stopped being a person,’ says Nigel.
Nigel, who lives alone, says this caused him to ‘sink into some deep depression’.
‘My day consisted of getting up in the morning, and drinking and eating until I fell asleep. I ordered my food online. My weight ballooned to 30 stone and I was totally immobile. I dropped off from friends and family, and became socially isolated.’
He credits his turnaround to occupational therapists from the local young-onset dementia team.
‘Had that carried on, I suspect I wouldn’t be here now. But they turned up at my door and ‘‘attacked’’ me with all the vigour and fervour of a religious crusade,’ he says.
‘They threw stuff out of my fridge and colluded with my friends, family and neighbours.
‘I think occupational therapists are the magic bullet – they build on what you have and enable you to do things.’
Nigel says if we don’t stand up for our rights, they will be diluted
Powerful voice
As Nigel’s understanding of his new situation came into focus, he grew increasingly angry at how people with dementia are treated.
‘For me, I think dementia is wholly a matter of human rights,’ he says.
‘On diagnosis, we are routinely placed with a community mental health team, even though there’s no presence of a mental illness. That’s human rights infraction number one.
‘Equity in healthcare, law, employment – they all disappear.’
He recalls having to get support from a voluntary agency on a tax issue, because HMRC staff wouldn’t deal with a person with dementia on their own.
‘It’s these slight, subtle changes,’ he says. ‘We’ve all got human rights and they shouldn’t dilute with age or evaporate in the face of frailty or disease. If we don’t use them, then they will be diluted.’
Nigel is also demanding better from those who oversee dementia care and support.
‘When service planners say that they’ll try to adopt a human rights model, that isn’t good enough,’ he says. ‘You’re expected to treat me exactly the same. You’re not doing me any favours – it’s the law.’
Nigel feels that people affected by dementia have yet to realise the power of their own voices in demanding that their rights be recognised and respected.
‘If there’s 850,000 people in the UK with dementia, and for each of them there’s 10 other friends or family affected by it, that’s 8.5 million people,’ he says. ‘Imagine if you politicised them, gave them a voice.
‘We could go to lawmakers and service planners and say, “I am part of the constituency of people with dementia – you will not use my condition to deny me my human rights.”’
Nigel meeting with Hannah Fitzgibbon, Project Support Officer, at our central office
Social movement
Nigel is adamant that people living with dementia should be at the centre of discussions about how services are provided.
He highlights the impact of people in Wales sharing their experiences of dementia with the Welsh government ahead of the country’s Dementia Action Plan.
‘In May 2016, the Welsh Cabinet Secretary for Health said that the voices of people with dementia had changed their minds about the services we’re going to provide,’ he says.
‘That action plan is a fantastic example of what happens when you involve the people who are going to be in receipt of these services.
‘Given the opportunity, we can get fired up, we can be ready to go. We can go to our lawmakers and say, “We don’t want what you think we want – this is what we want.”’
‘We want to bring to people’s attention things like the broken social care system,’ says Nigel.
Nigel is also part of the 3 Nations Dementia Working Group (3NDWG), a network of people living with dementia in Wales, Northern Ireland and England. They aim to use their personal experiences to become the ‘go to’ group for anyone seeking input from people with the condition.
‘We’re pushing social change to the forefront of our agenda. I want the dementia world to be a social movement,’ he says.
‘We want to bring to people’s attention things like the broken social care system, a benefits system that isn’t fit for purpose, and the lack of opportunities for people with dementia to utilise transport, education and healthcare.
‘We’re the steering group and we want to have thousands of associate members, so that when we get things going we have that strength of voice to really make an impact.’
Everyone involved
Nigel has been involved with DEEP, the Dementia Engagement and Empowerment Project, which brings together groups of people with dementia from across the UK to influence the services and policies that affect them. He also sits on a number of advisory groups and shares his experiences at events and conferences.
But he says that none of this would be possible without the backing of his friends at Fuse and Muse, the peer support group he attends in Swansea.
‘Sometimes dementia whispers in my ear, “Nigel, you ain’t strong enough to withstand the storm.” But one phone call, conversation or meeting with my group and I’m able to say to dementia, “I am the storm.”
‘There is no support like peer support – it has saved my life.’
As he plays his part in rallying the growing dementia movement, Nigel wants to ensure that no one is left behind.
‘I want everyone to have a say, everybody to have a view,’ he says. ‘I want everybody to feel valued and wanted – that’s the key. Nobody should feel marginalised or abandoned.
‘We’re all important. We’ve all got something to offer.’
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Update 06/12/18: This article was updated to correct some dates and ages.
Vick Setterberg
saysYes, Yes, Yes#
Rosemary
saysMy hubby was 51 yrs old when 1st diagnosed, now just turned 59. He has been in a care home for 12 months now and also has one to one staffing from 8am till midnight. He has had no speech for about 3 yrs now, occasionally will repeat one word, a bit like a parrot. The progression has been rapid and we take one day at a time. Not enough space here to go in to all the problems we faced and overcome but I wanted to say that it has been with the support of our local Alzheimers Society support worker, along with other people that attend the monthly meetings, that has helped us each step of the way. Signposting to support is vital and with yet another delay in Green Paper for social care, the situation is going to get worse for many families. Add in welfare reform changes that affect younger people with Alzheimers and it can be a nightmare to deal with. Policy makers must listen to those affected and those supporting them. If family carers break down, we end up with even more ppl needing support.
Sending everyone hugs and strength to see you through these difficult times. x x
S
saysMy mum has Alzheimer's aged 77, looking back it started about 10 years ago and she has been declining ever since. She lives alone which exacerbates the situation no end. Alzheimer's support have been helpful however the 'system', ie council/government and sadly doctors appear to have no concept of the disease and have been no help whatsoever. I care for my mum with help from my daughter but it takes it's toll emotionally more than anything else. It seems the sufferer and careers are just left to muddle through the best they can and are pretty much ignored. Government need to acknowledge the scale of dementia and start trying to actually address this worsening problem. They're should be a specialist dementia doctor in every GP surgery who can really help and most importantly understand and empathise!!!!!
Sue Grimley
saysSo many people in need of the right advice and guidance , appropriate care , emotional support, understanding, all kinds of support basically to navigate their way through so much uncharted territory . Alzheimers disease is so cruel.
Henry Barnham
saysHello all, I find this very interesting.
I was carer for my wife for five years after she was diagnosed with dementia when for the first time she became aggressive and was sectioned to a hospital which in actual fact turned out to be more like a detention centre.
That is when I began to realise that we were beginning to lose our human rights which I had suspected was happening for some time.
It became increasingly obvious that whatever we said or requested didn’t really matter.
In my wife’s case she had dementia and that was it, she was doomed and a danger to herself and everyone else. It was just a matter of time, but in the meantime she would be cared for and she would be safe, so they said.
What did that mean.
Well in her case she was taken out of my care and spent approx six weeks in this so called hospital where she deteriorated very fast, mixed with other patients in various stages of dementia.
Due to lack of supervision she was soon involved in an incident with another patient and put on watch , due to lack of staff much of this was carried out by agency staff, many of whom would have been better employed in a prison.
She began to have falls and though medical care for this was good and I was advised, the aftercare was very doubtful. I found her wandering in a corridor, locked out of her room after one such incident and though her falls were usually when she arose a.m. no precautions were taken to avoid this.
Her day was completely changed and regimented, the food was completely different and unappetising and canteen style.
All though I was spending six hours a day, every day with her, she became so depressed it was obvious that she felt that she had been abandoned
and her requests to return home were of no avail .
Preparations were made for her to return home at the end of four weeks but she had another fall and a water infection. The day before that was due I asked nursing staff if they had arranged for her own doctor to call and see her as it was obvious she was unwell and was told it wouldn’t be necessary but as I was having that conversation a hospital doctor turned up and after examining her, the release was cancelled.
She was released after six weeks to a care home but under a Section 3 which is a prevention of liberty and she became their responsibility.
So what happened there?.
Well as at the hospital it was an environment totally at odds with what is required for dementia patients, continuous banging of doors and screeching of alarm/ assistance bells and a totally institutionally system.
At first I was spending 10 hours a day with my wife including meals with her, until they stopped me eating with her and i cut it down to 9 hours. I was at odds with staff who went out of there way to keep us apart as much as they could. I was obvious she was not going to settle and this led to a Best Interest meeting ,which was organised and controlled by the council who were paying her fees to the home, with obvious results.
This in turn led to the council taking the Deprivation of Liberty to the County Court which covered a period of approximately six months and was mainly dominated by people and groups all excepting the Judge, whose interests were best served by her Liberty being denied.
A few days after the penultimate hearing i was ambulances to hospital, approximately the same time my wife was moved into nursing care and fast tracking, which is assisted end of life but I was unaware until my son visited a few days later. I myself was issued with a D N R as being 94 years young they could not give me any treatment but after about 23 days I was allowed home under supervision and with help I was able to start revisiting my wife. but for fewer hours and with limited mobility.
I found my wife in a sad state but I will never forget how I saw her face light up when I returned to her bedside after several weeks of absence.
I new all I could do was to try harder to get her home and hopefully into a more tranquil environment and private care and total companionship.
The final hearing was a few weeks away and the fast tracking had been stopped after an assessment which turned out to be questionable.
The results at the final hearing were obvious, after approximately 12 months the final decision was made.
My wife died the following da
Jane Field
saysOh Henry, your story broke my heart. What an incredible love you shared with your wife, if we could all be so lucky. I’m so sorry for your terrible experience, this should never be allowed to happen.
You are an absolute hero who never lost hope in the face of repeated injustices. Remarkable. Thank you for sharing your story.
Henry Barnham.
saysHello Jane, thank you for really understanding, how I wished people would try to do the same when it was all happening. I apologise for causing you so much stress and I hope you are OK now. Hopefully you will be able to avoid the dreaded disease, me too.
Best wishes ,HENRY.
Maureen Erdwin
saysI care for my husband whom has Lewy Bodies dementia. Parkinson's and a Brain Aneurysm and brittle diabetes, I also care for our 55 year old son
whom has mental handicap/autism and his younger brother whom is
also on the autistic spectrum aged 39 recently diagnosed with diabetes and high blood pressure and suffers greatly with panic attacks.
My own health is not the best which does get affected with stress
being played out by the cuts in benefit from the DWP and the lack of
support from the medical services.
I feel that the Clinical Commissioning Groups could do far more in supporting families and when GP's do get some training on Alzheimer's and Autism then they may learn how to empathize
and understand that loss of memory starts at a very early age
in particular when combined with more then one medical ailment
that has not been identified/diagnosed earlier and helped.
Lynne
saysMy uncle, now 92, has suffered from Alzheimers for the past 11 years. Since he moved into a care home in Heckmondwikw, Yorkshire, his weight has ballooned so I can empathise with your comment, Nigel, about over eating. I have battled with the authorities and the care home managers but I am constantly told that my uncle has to be given a choice. Somehow, no-one believes that although my uncle has had Alzheimers for 11 years, he can remember how much he has eaten, what he has eaten and when. I would be grateful of any advice that you could offer me.
Chris Maddocks
saysYou are one inspirational man Nigel, who I have had the pleasure of meeting. What you say and the words you use are truly powerful and I am encouraged that you are and help us all affected by dementia to make a difference. I am with you on this and ready to support you and help make a change for those of us with dementia to be treated fairly and access the things we are entitled to without constantly having to fight our corner. Count me in!!!
Doreen Johnson
saysLack of advice 6years ago and my own nursing qualifications(midwife) left me without any knowledge that we were entitled to council tax reduction and careers allowance. After paying for nursing care it has left me a poorer widow. Let’s ensure back up and advice to everyone.. Have explained to my council who appear to refuse to allow retrospective payment because we didn’t claim initially. Also attendance allowance was only mentioned when they asked for payment at nursing home.
Shirley Fell
saysWe've just had a hearing to determine if my husband, John should remain on a section 3 in a mental health hospital that has failed to care for him since his admission 7 months ago. Prior to his admission l care for him at home & got no help from anyone - social services denied there was any help, friends vanish, family want to know how much cash can they have! He doesn't get personal care, they don't clean his room & they are not concerned that he's lost so much weight cos he's not eating, they don't keep accurate records & use highly emotive language which distorts the facts. I am not heard. I fight daily for his rights but lm failing him & it makes me so angry. Now they talk of shipping him off 80 odd miles away & l won't be able to see him. I've had two major cancers from the stress & don't have strength to take care of me. This has gone on for 12 yrs. No-one is putting John's best interest at heart, he looks like he's from a concentration camp. The whole ward are comatose & display Parkinson type symptoms - zombies are easier for staff to deal with. WHAT CAN I DO???
Karen Penny
saysIrrespective of age Dementia is a very cruel illness ....take care Nigel and thank you for all that you do
Robert Kimberley
saysThe article assumes that everyone with dementia can still communicate. My wife has Alzheimer's, which was diagnosed about four years ago. Now she needs carers to do anything. To stand up from a chair; to walk, with tiny steps. She does not talk she sometimes nods in agreement. She used to lead singing at church by playing a piano, but not now.
Derek Pritchard
saysMy partner Anne is now in a care as Anne’s Ahlzeimers became advanced and she couldn’t weight bear so I reluctantly decided that the care home was the only option I visit Anne every other day and the staff are superb
At our local doctors surgery the staff didn’t know how to deal with Anne’s condition apart from one doctor who had first hand experience of looking after her grandmother who had dementia
At our local hospital they had dedicated dementia nurses and our experience with the hospital staff was extremely good
Prof Paul Camic
saysI could not agree more with the importance of Nigel’s story. People with a dementia and their carers could benefit enormously from the development of a social health movement. Social health movements can be effective processss to gain the attention of government, charities, research organisations, health and social care as well as the general public. Becoming health activists within a social movement could help people develop a greater sense of self efficacy and agency by advocating for their care and support needs as citizens across different dementias and longitudinally, across different levels of impairment. Highly visable social movements in health have included the fight against AIDS by mobilising people who are HIV+, obtaining early screening for breast and other cancers and rapid access to treatment, increased awareness about climate change and it’s health impacts, to name but three.
Cosycasa
saysNigel, you send out a powerful message. Good luck with your campaign. Warmest wishes