Real stories

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

I was quite lucky as a carer .first with my Mum who was mostly just quiet and as she was going blind she had talking books and other help from Social services. I say mostly because she did get sectioned and spent a few weeks in the local Mental health hospital But well looked after. She then settled in a good care home. Then mum died soon after my husband was diagnosed. My husband was diagnosed with vascular dementia and it was diagnosed because I took him to the doctors and he had a brain scan. The worse thing was getting him to stop driving. He had his licence taken away by our Doctor who knew us both very well. That bought its own problem with him locking himself in or out of the car or getting in the driving seat and refusing to move. Eventually he had to go into care. The staff there were very good and the manager had a very good reputation. Now its my turn. I was diagnosed nearly 3 years ago with FTD. Frontal Temporal Dementia. My driving was getting really bad and I lost all confidence so I saw the doctor and had a brain scan. I have a bad memory for some things and a total loss of interest in most of the things I liked to do. I live on my own with my youngest son and my daughter in law, who help me when I need them, Oh and I talk out loud when going for a walk or to the shops. I had to stop driving as well. That was my own decision as I was losing confidience and afraid I would cause an accident.

I've written to Herts County Council. I want to start a new care home. One where ALL the money is used for good wages for front line staff, management and facilities and includes post diagnosis Neurology. It will be NOT for profit and will be run as a trust by the council. I will try and use crowd funding to get it started.
Initially, the care home will be for PCA sufferers who have the most intense needs due to their blindness, severely impaired cognition and with no ability to communicate their needs.

This is what my wife Sylvie is like now. Age 68 she has been totally dependent for 6 years and is in her 7th care home in a year. I pray the one she is in now will meet her needs: they have very good staff and excellent management, but my wife pushes the boundaries of their capabilities.

The present care home system is broken because it is used by rich owners as a lever for cash and profit and it works against its staff and patients.

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

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.

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

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.

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.

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.

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

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.

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.

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 .

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.

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.

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.