Dementia Support Line
Real stories
‘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 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 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 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.
‘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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michael
saysmy wife has been diagnosed with PCA... I have posted our story at
pcabensons.wordpress.org
Julia Thornton
saysI 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.
Brenda
saysMy Dad John has just been put into a care home after being diagnosed with Dementia but my mum who's 83 and myself are finding it difficult to visit often what with Covid and paying for cabs to the home as mum is not good on her feet now days. My Dad is struggling as he is possibly around stage 5 and cannot understand why he's not coming home, everything happened so fast. It's so hard for him as for my mum they have been married for 65 years, The care home is not really being helpful as in feed back and letting us know how my Dad is getting on, it's very upsetting it's us who has to make the calls to find out how's he's doing when we can't visit and video calls are far and few.
My mum needs support as I work part time and cannot always be there for Mum and Dad, it's so hard right now.
Ann
saysMy Mother was diagnosed with Alzheimer’s at 58 and we had to allow her to go into care at 61 otherwise they would have sectioned her. Her Mother also suffered from Alzheimer’s as did my Maternal Uncle. My brother was diagnosed 3 yrs ago at the age of 63 and has deteriorated rapidly and will possibly have to go into care too. We had to sell my Mum’s home in 1994 to pay for her care, she lived in care for 12 yrs before she died so every penny that she had went to pay for it. I don’t think you should have to pay for residential care when it is because of illness. If you are in hospital because of illness you don’t pay so why should people suffering from dementia have to ? If someone chooses to go into residential care for their own comfort in being looked after and can contribute to the cost, I think that is acceptable. Thank goodness for people who are able to be a voice. Thank you
Debbie Hurford
saysGood Luck Graeme for 1st of July. Your a true fighting campaigner with dedication and love. I'll be with you in spirit. 💙
Caroline McMahon
saysI think that your work is marvellous, I've had similar issues too trying to get things right for my mum. I agree that the care staff and managers do not get the support and respect they deserve, but most of all I really get annoyed at this government at the slap dash way that care homes and their residents and staff have been treated during this pandemic. I wish you all the very best and my support for all you do for your beloved Ann and all those others who suffer and have family members who suffer with this awful disease.
Yvonne
saysGod bless you Graeme you truly are a hero. I was a carer before I retired. I was privileged to care for some very special people with different forms of dementia. Each one leaving an indelible engraving in my memory. All of them responded to listening to music & we would sing songs that had been meaningful in their lives. The power of music to reach people & bring them back even for a short while never ceases to amaze me. Sending both you & Ann a huge hug. An enormous Thank You for all you do, because one never knows, if our own health could be effected in the future. Stay safe, stay strong for you and Ann X
ValerieBradley
saysPeople with Alzheimer's, should not be paying care bills ,there is continuing healthcare, you ask your social worker to do a checklist.if you pass that the local CCG carry's out an assessment.
There is a site on line which explains everything, it's called care to be different.
Also on line is Admiral Mathias, who's crowd funding a judicial review,its a very good site .
Yvonne Kirtlan
saysCongratulations on your award. From what I’ve read you have certainly earned it. I wish you every success in your fight, which is not just for your wife but for all of us and for that I thank you. My nan and my mum developed dementia and I dread the same happening to me. May music continue to give you joy.
A SOUTHGATE
saysHi Graham well done keep fighting!! My wife has had vascular dementia for 10 yrs It has been a battle to get anything. She is now at end of life care yet I have had to fight to get a care package but I am like you I will fight for my wife
Helen
saysI Agee with all the comments . And well done for continuing to fight . The system is a discrace . The people who are suffering now have contributed to the care system for many years . But when it comes to their turn for help and support you are faced with a massively unfair system that basically takes every penny they have in most cases in return your relatives receive a care package that is just a piece of paper that is rarely referred to. ( yet another form to complete and the content worth less what the paper says happens in reality is a massive fabrication of the truth)Care that is well below acceptable that you would expect or would provide given the choice ,complaining falls on deaf ears and nothing ever improves . It leaves you totally drained not to mention guilt ridden that your have had to leave your Mum in this place. We only get one Mum it is so unfair
Margaret Humphreys
saysI'm right behind your campaigning. Congratulations on your award. I looked after my mother and then my husband who both had dementia and who have both passed away.
Dementia has to be accepted as an illness from day one, and care has to be funded by the NHS, like other serious conditions. I used the information from Alzheimers Society to fight for NHS Continuing Healthcare. After a series of assessment "battles", I acieved full NHS funding for my husband who was in a Nursing Home in the last 2 years of his life. I was shocked to discover that of the 30 Dementia cases in his home, he was the only one receiving full funding from NHS. I also had to fight to prevent the funding being removed, when his dementia robbed him of all his faculties and he had therefore ceased his troublesome behaviour which had helped me get the NHS funding. However, I managed to retain it until he died.
I know that most families struggle to deal with the system of Social and NHS Care. This chaos must be replaced and common sense must prevail. I have written personal letters to my MP, as well as sending the campaign emails that A S produce for us. He has replied with a promise that this Govt will act on this. Thank you for campaigning for justice for dementia sufferers.
Ray McGinley
saysGraeme, Thanks for your dedicated campaign, which must be difficult while supporting Ann. My partner of 27 years was also diagnosed with PCA Alzheimer's in 2018 although I knew there was something going wrong much earlier. I have been able to support her on my own until now but have had increasing difficulties. I am now chasing social services and other organisations to get help as she can't do anything to help her self. So a big thank you for your campaign.
Margaret Chandler
saysCongratulations for all you have done for your loved one and others. I lost my father-in-law 2 years ago and my mother-in-law a year later to alzheimers. Overall they received good care, but following his death whilst Probate was being dealt with the owners threatened to evict my mother-in-law even though they were aware of the situation which caused upset us greatly. Fortunately she wasn't aware of what was happening and we were of the opinion it was all about the money and never about her care needs. The support was being withdrawn and she became a cash cow, so be warned.
Sue Lovett
saysI salute your courage& dedication and wish you & Ann all the very best. My mum died of Vascular Dementia in 2010 and her journey through that dreadful disease was appalling. There was no problem getting her into a care home, mum & dad had no assets, but the care she received both there & from NHS with her frequent hospital stays was dreadful. There was, and is, no joined up thinking when it comes to social care. My dad was physically very frail and in very early stages of dementia and I was having to spend so much of my time trying to get the care both my parents needed and deserved. It was soul destroying then and nothing has changed since then. All the very best.