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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Colleen Aris
saysMy mom has been diagnosed with late onset Alzheimer's Disease. Her short term memory is the worst affected. We have to keep re-telling her things to help make things move to the long-term memory. I am retired now with my husband. We both love my mom it is a struggle sometimes as we live over twenty minutes away from her. She has careers 4 times a day which are supposed to stay with her for 45 minutes but I know not all do. Mom pays for the careers but still gets short changed sometimes. It breaks my heart what it is like for people with dementia and Alzheimer's. Something needs to change for them to be cared for without the families having to worry more. You do a very special job and I feel proud for you.!!! You deserve the award.
Karen Watson
saysA massive thank you Graeme - you've taken on a huge but so very necessary task. My Dad will be 96 on Thursday and we will be thinking of you as we celebrate. He has been in a care home for nearly 3 years and we are close to the end of the money gained from selling his much loved little house that he scrimped and saved for to provide for his family. A Rear Gunner on Lancasters during the war, he was a hard working, proud and honest gentleman. Thank you so much for being his/our voices - Alzheimer's is such a cruel disease. Good luck!
Joan HINDLEY
saysGood luck to you. We all need luck to get the help we need its a terrible system they have been forgotton
margaret glenton
saysGood work let’s hope the government listen. I know there is a massive drive from health,social and charitable organisations as well as good people like yourself calling from a proper fully funded health and social care system. With better pay, training and retention of good staff. Let’s make our health and social care system great again
Joan HINDLEY
saysHi its awful what we have to go through to get the help we need whilst we are going through torment looking out for our loved ones when people who dont work can get all they need who helped our parents when they were struggling to work all hours to pay their own way my mum wouldn't claim anything when my dad couldnt work she carried on until working until aged 70 and now she cannot get help so so wrong
Carol Rafferty
saysHaving been a carer for my 94yr old Mum for a quit a few years, she sadly had to go into care with Dementia Dec 2020, the worst possible time, the guilt & heartache I felt was all consuming. Under normal circumstances I would have been able to help her settle in, even now I haven't seen her room, where she eats or the lounge. So can’t picture where she is, I’ve only been in designated room for visits.
Also just to make things worse I now have to sell her home to pay for her care. Mum & Dad worked all there adult lives paying tax & insurance. Dad was a Royal Marine during 2nd world war. He sadly passed away 5yrs ago She would be heartbroken if she knew that all she worked for will be taken away. It doesnt encourage anyone to work hard, buy a house, then lose it all. It all feels like coming to terms with a bereavement before they’ve died.
Christina Dyall
saysMy heart goes out to you - particularly for keeping going when I know only too well that with no help available it gets so hard - keep going - you're doing so well
Brian moss
saysI have lost my dad with this horrible dementia 4 years ago and now my mother is got it wanted us to sell our inheritance to pay for her care home fees, they have both worked all there lives my dad as a coal minor from 16 years old up until Maggie thatcher sat them in 1984
My MUM all her life with two jobs home care and a cleaning job
Paid all there life into the social pot Now that she is in need off something back to care for here no sell the house and that will pay her care home fees just under £2,000 per month, and it's not a 5star home at that,
It's a roof over her head the care they give is OK but lost her teeth lost her hearing aids never got the correct glasses on never got the correct clothes we bought for her each month I'm disabled my self or I would care for her hope we win the fight and good luck with the fight !!!
Julia
saysMy heart goes out to you and Ann. I have often wondered how we would have been had Mum still been alive during the pandemic. Your campaigning will help achieve change I'm sure.
Sandra Hulkes
saysMarvellous work - well done!! I worked with Dementia sufferers and agree music is the best therapy.
Patricia Martin
saysGood luck on your journey. I have lost a loved one to dentist with Lewy Body. The support for our cousin and family was nil. We had to pay for everything as he had some money but just a little support would have been most welcome. We had no idea what we were doing and no guidance whatsoever.
Pamela Carnall
saysYes exactly as you said Parkinsons and Lewy Body is what my husband has and now in a Nursing Home. Still fighting for chc.... ...nil results so far is a slap in the face!! Thank god for my daughter and Beacon we are in the last stages of irp an"independent review panel". Didnt know what I was walking into its a virtual minefield and an absolute farce !
I've looked after and done MY best so far but an absolute disgrace!!! Continuing Health Care!! ... What continuing health care???
RAY CLAYTON
saysMY HEART GOES OUT TO BOTH OF YOU
VICTORIA WALKER
saysI lost my husband to Alzhemers and Parkinson ,in Nov 2020 ,he had just gone into care ,as we came into lock down ,and it is indescribable, how dreadful it was not being able to comfort him and he didn't understand why I wouldn't come into him 😢 the strain of taking care of him and not being able to get help ,not getting any sleep ,has made me ill I have just been diagnosed with pancreatic cancer ,and am waiting for an op,
Victoria, we are so sorry to learn about the loss of your husband. It sounds like you're going through an incredibly difficult time at the moment.
If you need any support, we strongly recommend speaking with one of our dementia advisers on 0333 150 3456. (More information about the support line, including opening times, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line)
You may also benefit from talking with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or create an account to reply and connect with others: https://forum.alzheimers.org.uk/
We hope this is helpful, Victoria. Please don't hesitate to call our support line any time you need someone to talk to.
Alzheimer's Society blog team
Lucy
saysGraeme - Thankyou for your dedicated campaigning on behalf of all people needing to access the social care system. I wish you every success on Thursday. It’s such an important issue.
Dawn
saysMy Husband passed away nearly a year ago now from PCA at the young age of 65 ,I myself cared for him at home till the end with very little support .I think this is something our government’s need to up their game on so I am totally in support of you and all the work
Harry Owens
saysI have total empathy, the system needs to be revised, I have always said to people Mary has the disease, but I am dying, everything thing you try to do is a fight, or an argument it totally just wears you down until you feel you have nothing left, then you will get a smile and you are lifted and you go again