Graeme with Ann and care home staff

‘I can be Ann's voice in the wider world' - campaigning to cure the care system

Graeme’s partner Ann lives with Posterior Cortical Atrophy, a rare form of Alzheimer’s disease which affects vision and spatial awareness. Graeme has experienced the social care system inside out, and is calling on Government to cure the care system now.

After starting as neighbours in London in 1987, Ann and I’s relationship developed through friendship and our shared love for music. Friendship blossomed into something a little more on Valentine’s Day 2000, a date chosen by Ann so that I'd always remember our anniversary! 

Our lives supported each other. Ann supported me when I returned home for treatment after an accident in Indonesia. I supported Ann in her efforts to train as a teacher, and our move together to Cumbria. 

‘We went to gigs together, travelled together, we enjoyed life to the very fullest; until 2007, when we began to realise something wasn’t right.’ 

Ann holding a starfish while diving underwater

Ann on holiday before her diagnosis

Ann’s diagnosis 

From the moment we met, Ann was in the driving seat, literally – she loved to drive and to be behind the wheel. However, one day she asked me to take over. Going round bends started to upset her and she became easily confused. 

Eventually, after a lengthy process, age 59, Ann was diagnosed with a rare form of Alzheimer’s called Posterior Cortical Atrophy. This affects vision and spatial awareness, which helped explain how she'd been feeling.

Leaving my job, it was my turn to repay Ann for looking after me.  

We managed at home for a while, with some periods of respite and recovery for me from my own ill health. But Ann’s condition sadly declined.  

Moving into care 

After an accident in 2017 we knew she needed the full-time support which only entering a care home could bring.  

While my knowledge of the financial support we could access for both Ann and I was extensive, due to my previous job, the process lacked clarity.

‘At every twist and turn there were decisions to make, when I simply wanted to spend my time with Ann.’

Living in the care home, I knew Ann missed music, and I did too. I started hosting ‘Feel the Blues’ gigs in the care home to bring music to Ann and raise awareness of how music helps those affected by dementia.  

The gigs bought us both such joy. But seeing care from both sides, both at home and within the care home, I witnessed the pressure placed on the social care system. And when the pandemic hit, abruptly putting and an end to my visits with Ann, this became even clearer. 

Graeme visiting Ann while music plays on the TV

Graeme and Ann were brought together by a love of music

Fighting for face-to-face visits 

The past year has been tough for all of us. But imagine how much worse it would have been if you couldn’t understand why it was happening; why you no longer saw your loved ones; why your carers stopped visiting or why they wore masks. 

That’s why, working with Alzheimer’s Society, my local MP and members of the House of Lords, I started telling my story of just how difficult it is to understand and navigate the care system. We began the fight to allow care home visits to go ahead. 

Throughout 2020 and early this year, I made an appearance on local radio, joined discussions on meaningful visits with Cumbria County Council, campaigned across social media, and held decision-makers to account in the House of Lords and Commons.  

‘It was an incredibly challenging time being apart from Ann, but she remained my absolute focus.’

Knowing that my fight may enable me to see her again kept me going. With every new announcement, from allowing visits, to establishing the essential carers status and encouraging outside trips, I am pleased that our voices are being heard. I'm increasingly positive that further change is possible. 

Together again

Ann’s normal memory of me had gone about a year ago, but the memory of my voice remained. With increased visits, I now hope, we can bring some of that spark back. We have been able to enjoy music and special occasions together once again. 

Graeme presented with Dementia Hero award

Graeme is awarded a Dementia Hero Award for his tireless campaigning

I was gobsmacked to win the Dementia Hero Award for Campaigning.  

This has given me the opportunity to talk about the importance of music for those who are affected by Dementia. I also want to raise awareness of Posterior Cortical Atrophy, which less than 5% – including Ann – are diagnosed with.   

But more importantly I can be Ann's voice in the wider world. Ann was devoted to helping people - in the careers service, education and finally the civil service, and now that’s what I do. 

I like to think of this as Ann’s award, I am carrying her work on. Everything I do is for her. 

Graeme and Ann

‘We need a simpler care system,’ says Graeme.

Curing the care system 

Right now, our flawed social care system means that nearly a million UK families are struggling to care for their loved ones with the dignity and support they deserve. 

‘Decades of under-funding have led to a system that’s difficult to access, costly, inadequate and unfair.’

Staff do not receive the respect or pay they deserve, and the system struggles to cope with ever increasing demands. But it doesn’t have to be this way. 

The Alzheimer’s Society #CureTheCareSystem campaign places those issues clearly on the Government 's desk, urging them - two year’s after the Prime Minister’s promise to ‘fix the care system’ - to support those living and affected by dementia once and for all. 

For Ann and I, and all of those we have met and are yet to meet through our journey, I am calling for greater recognition of the role which loved ones play in care. We need a simpler system to access financial support, and further integration between the health and social care systems.  

More than anything however, I am calling for the Government to recognise the voices of the 135,000 individuals standing up for the rights of people living with and affected by dementia. We must cure the care system now.

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50 comments

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I lost my wife, Cathy, in January, we had been married for 56 years. I was fully aware that Alzheimers would eventually be fatal but I was determined to care for her as long as I could. I have to say that the support I received from the NHS, Social Services and the Local Authority was great. In the early part of last year we had reached the stage where I couldn't leave her for 10 minutes and was in the process of organising some respite when lockdown hit. I became ill in July and was hospitalised suffering with pneumonia and blood clots. Consequently Cathy went into care. The home was superb but the inability to visit was very hard to bear. As time went on I consoled myself by looking forward to Covid restrictions being lifted, sadly this never happened and she died alone and confused. It is vital that arrangements are made to allow visiting when loved ones are in care

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Hello,
My mum died of alzheimers and I assume that is why I have it and dementia. Because of my mum's death, that is why i have supported Alzheimers Society since. I will continue to support you.
Cheers.

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Thank you Graeme and Ann for telling us your story.
It is really difficult to have a loved one with dementia. My dad, George was diagnosed with Alzheimer's 18 years ago, he is now 83. He has been in a care home for just under 3 years and is sadly in the last stages of this horrible disease. Over the last year, not being able to see him has been devastating. Happily I have now had 3 one hourly visits with him, and it has been wonderful to hold his hand, talk to him and just be with him. He can no longer sing with me or dance with me or do any of the silly things we did together but I will never forget the man he was before this disease took him away from me.
I am really pleased to hear that you have been recognised for your campaigning, you are an inspiration to all.
Jane

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After losing her husband of 62 years when he suddenly in February, my mum's life changed forever. We had to make the awful decision to move mum into a care home. Mum was isolating for 14 days and then when we could visit, were covered head to toe in PPE. We muddled our way through a broken system at the same time of being broken ourselves. Graeme, I salute you sir for all your efforts, courage and tenacity.

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Thanks to all involved. It's been a horrible time for those with loved ones in Care Homes or having Care at home. Let's hope it gets better soon and that Care gets proper attention and end the ludicrous amount of money involved for those who have worked most of their lives in UK, whilst others, who have never worked here gets free care.

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Hello Graeme, what a story you have to tell, all of it showing your dedication to Ann. I worked as an activity co-ordinator in a couple of care homes, music was by far the best activity we did and I used to encourage everyone to join in, I'm sure music stays with us for a long time, good luck to you in all you do.

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Congratulations on your award, Graeme. I wish you every success with the campaign. The whole care system needs a serious overhaul.

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Graeme, my heart and thanks go out to you. I cared alone at home for my husband who suffered with Lewy Body Dementia for 4 years. We both slowly died together and when he was finally overcome by this terrible disease, I was left with all the terrible memories of what happened to him. That was almost 3 years ago, and I still feel as if it was yesterday. We too received no help and trying to get even a District Nurse to come out, was an uphill battle. The care system is a scandal. Well done for all your tireless work and God Bless you and Ann.

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When you get to the stage where it is impossible to care for your mum at home … you are exhausted and upset… then the pressure begins .
The number of phone calls to make quick decisions …. The abbreviations of systems you know nothing about …. The sudden loss of information about how she is physically and mentally … then the anxiety of the financial commitment coming your way…. is a nightmare.
Why are there so many different departments/organisations firing information at you when you are at your lowest ebb???
It’s not the kind people employed in each role .. it’s the whole machine that needs looking at.

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It’s the people like you that will make a difference, thanks Graeme.
I’m currently caring for my mother 94 with Alzheimer’s , And trying to get some respite after 2 and half years, I myself need help . Although there seems to be several departments for services to help , I agree it is a struggle and I myself am worn down by this process alone . I do get the feeling that I just fall into a tick box category. So please stay strong and carry on please .

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It is a terrible disease and one that could affect anyone of us. The Government needs to bring NHS and care back into National ownership and not subject to privatisation for Investors to slowly destroy our beloved NHS.

My heart goes out to you all and urgent help is needed to support patients and carers.

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My wife has just been diagnosed with dementia and we are trying to get used to the difficulties that dementia brings on so any advice we can get would be a tremendous help.

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Wow, what a man..

You are incredible, I lost my granny to vascular dementia in 2018, the care she received was dreadful we were told that dementia isnt painful by one of the nurses, we tried everything but in the end we lost her.
She was an incredibly strong independent lady and dementia robbed her of that.

I am campaigning and will continue to campaign in memory of my lovely granny.

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my wife has been diagnosed with PCA... I have posted our story at

pcabensons.wordpress.org

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I lost my husband in February of this year after being in a home for over 6yrs . His funding , chc , was removed last year due to his needs changing . I have appealed twice and in the meantime he died ..I'm now appealing to NHS England ..he was dieing yet they said he needed social care not primary health care . It's just ludicrous .
Well done and keep up the good work . It's all just so heartbreaking .
Julia Thornton.

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