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My husband started showing signs of memory loss and confusion backing 2017/18.. I took him to the Doctor but didn't get very far. Over a period of more than a year he said there was nothing wrong. Eventually in 2019 the Doctor did do some tests with him and confirmed that his memory was deteriorating. He was eventually confirmed with Alkzheimers Disease in December 2019. Going into Lockdown didn't help and he seemed to deteriorate quite rapidly. I found life becoming difficult with the isolation and trying to cope with him. Eventually I needed some help to look after him and found getting a Carer for 1 hour each morning quite difficult. As time went on into 2022/3 I had to pay for someone to sit with him whenever I needed to go out shopping or even go to collect prescriptions. By 2023 my health was deteriorating and in June 2023 my family stepped in and suggested we sold up and moved 200 miles to be nearer to them. We intended to buy a bungalow near them but within 4 months my husband had deteriorated and he died. I found that the dreadful lack of Carers was one of the biggest problems.

My Father,
In a home being cared for….
Has other medical problems
But must be torture for himself

He is 92, a Barnado’s child from 1930’s

An amazing man, who has dealt with it all.

And has a place named after himself on this planet

Signy Island, Antarctica…Pinder Gully

Mum was diagnosed with Alzheimer’s disease in 2014. I’m a mental health nurse & was fortunate to recognise the symptoms & pursue diagnosis quickly. Unfortunately drug treatments did not slow down the progression of the disease particularly & she deteriorated rather quickly. The cost of care in her home was very expensive which she had to pay herself as she was over the financial threshold. Due to a relatively rural location, reliable & quality private care availability was difficult to find. Social care would not assist with this process as we had LPA & self funded. Carers were often inexperienced, poorly trained or unreliable. Many safeguarding concerns were raised by family as a consequence of poor care. Family had to work full time & provide frequent support to bridge the gaps in the care system or due to carers not doing their job properly. Timely care calls when people with dementia need them most were difficult to source. Weekends & evenings were difficult too placing extra strain on family support. The stress of care system failures on family had a deleterious effect. Not everyone with dementia wants to leave their home & go into nursing care. They want to stay in their own home with its familiarity & comfort. They merely want good quality care at home on a 1:1 basis. This however appears very difficult & expensive to source & is often at the detriment of their family’s wellbeing as they fight to bridge gaps & poor quality services. Mum died in her own home suddenly 2 years after diagnosis. It was possibly a blessing that none of us had to fight any longer for her to try to live well with dementia. The emotional scars however remain very much open. Dementia is an awful disease eroding your loved one into someone unrecognisable.

Hi my husband Barry has frontotemporal dementia and was diagnosed at the beginning of 2019. His twin sister has vascular dementia both of them now are residents at a wonderful care and nursing home together. They are now 75 years old and it was so difficult to make the decision for them to go into the home.

My husband was diagnosed with alziemers and vascular dementia over 3 years ago, and a year after that Parkinsons. From being a manager in a responsible position he now has lost the ability to read and write.
He cannot always find the words to express himself and consequently has lost confidence.
Dementia has changed our marriage our outlook and our ability to do all the things we used to do together.
We have some good days and we love one another very much, but it's a hard and bumpy ride.

Mum showed signs months before lockdown repeating, forgetfulness. After lockdown things came to a head hearing voices, paranoia, delusional and ended up in hospital, diagnosed with mixed dementia. Mental health gave tablets that didn’t really help. I asked for help from SS + mental help but they pretty much did nothing. Because of my own health issues mum had to go to care home where she has been much better looked after than I could manage alone. It has taken most of her savings and I worry for when her money has gone having to ask for help. I would like to mention Hospital Staff + Doctors. Need to learn how to deal with dementia patients as in our experience there is no understanding and very little care given. Thank you

I was too young to really understand what two uncles were suffering from and both were locked away in what was known locally as the loony bin and died there. When a close friend was diagnosed more recently, he went into care and was well looked after. His wife was the one who suffered more. Slowly letting go of her first love, after more than 50 years of marriage and watching him lose all recognition of her and their children. Yet she visited every day because she never stopped loving him and who he was to her. Family needs support too, not just the one with dementia.

My wife was diagnosed with Alzheimer's in 2012. I have looked after her since then. However I went into hospital in December 2023 so she had to go into a care home. In January 2024 I returned home and brought her too. She can do nothing for herself so we now pay for a live-in carer

My grandma started forgetting to close the house door or turn off gas for cooking. She had to move to a care house for her safety. She couldn't remember my dad/her son, but could still remember my mum/her son's wife. Then she forgot to eat/feeling hungry (refused to be fed) and passed away. So sad. Wasn't too old.

My mum has vascular dementia. She has had the condition for about 7 years. She is 92. Her husband , my dad, had Alzheimer’s disease, before his death 6 years ago .She receives a mixture of family and professional 24 hour care. For the family care, we operate a rota amongst the siblings. She has had a relatively slow. cognitive decline, despite a almost complete loss of short term memory her communication skills are still pretty good, and she can still undertake some aspects of personal care such as going to the toilet on her own. However, she needs help dressing and undressing, washing and showering. We cook for her and administer her meds. She enjoys people’s company and talking about her childhood during WW2. We love watching TV together particularly The Repair Shop, Gardener’s World & Antiques Road Trip. She used to be an avid reader, but very sadly doesn’t now have the capacity to concentrate enough to do so ( she still loves books though!) .
Looking after her is a joy and a privilege ( she’s my mum! ) ; she is very sweet and appreciative. However, it is still quite a task. On the day one to two days a week that I care for her, l still have to do a full day’s work, and am only able to do so because I have a laptop and an understanding employer .
I would like the Government and wider society to know or appreciate how many families are caring for relatives with dementia, and how it impacts on them emotionally and financially.