Dementia Support Line
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If you're ready to tell your story, we want your voice to be heard.
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
It will take society to beat dementia. We’ll take your stories to those who need to hear them most, to help make dementia the political priority it deserves to be.
We were both in our mid 50s and had recently moved to Wales when my husband was diagnosed with early onset Alzheimer’s. We had no family locally and we were both...
My mother once said my Dad was a bit woolly and...
My husband was diagnosed with alzheimers and vascular dementia about 7 years ago he also is bipolar so I have been his carer for 24 years. He was a famous, respected...
My poor late mother died in September 2018 after...
In 2015 my wife Chris was diagnosed with Early Onset Alzheimers, at the age of 53, at the time we never even knew this was a thing, I had never even heard about it, I...
My partner has been my rock through my illness, I...
I volunteer at a Hospital ward that deals with...
I have been full time home caring for my wife for 7 years +.
Upon diagnosis the Memory Clinic said my wife was discharged to the care of her GP as they did not do any...
My Dad had Alzheimer’s and passed away 2 years ago...
I care for my Father with vascular dementia diagnosed in 2021 and my mother with Alzheimer’s diagnosed 7 months ago however took 18 months for a diagnosis.
I take...
Dementia is one of the worst things that can happen to anyone to have your mum not even know who you are is devastating. Every single time you see them they ask who...
My wife had dementia for 4yrs it started before we realised it got worse and this we'd 18th she died from it. Her brain not knowing to eat or drink. Marion finish...
We were both in our mid 50s and had recently moved to Wales when my husband was diagnosed with early onset Alzheimer’s. We had no family locally and we were both still working. Up to that point we had a very happy marriage and a very equal partnership. The most difficult part for me was my husbands complete change of personality. He accused me of hitting him, being a control freak, stealing all his money and locking him in the house, even though the key was in the door. He eventually attacked me at which point he was admitted to a nursing home and was there for 7 years, until he finally died in 2021.
Val
My mother once said my Dad was a bit woolly and didn’t retain; I believe I am on this path. Although I try to keep my mind as active as possible, writing short stories, I sometimes can’t come up with a word I am looking for and can recognise and old face on TV, but not remember their name. After joining a local Art Group a few years ago, I had to write down the names of others to remember them. Even minor memory loss can be a worry, even though it might not be dementia on the scale we talk about. When the day arrives I forget my credit card pins, I might then go for assessment. I feel I’m in a good life at the moment having joined a local bowling club, but I don’t always feel as sharp as I would like to be; I can’t read a whole book, only bits at a time. Hope this helps.
John
My husband was diagnosed with alzheimers and vascular dementia about 7 years ago he also is bipolar so I have been his carer for 24 years. He was a famous, respected professional artist and a doctor of phylosopy. I mention this because the change in him is devastaing both for him and his family. His diagnosis was badly handled with no support offered or advised. We have support from DISC a local voluntary organisation who support carers as well as the patient. Through their support and educational courses they have made living with dementia possible and sustainable. Recently we have built in regular respite breaks which helps us to continue living togeher at home more sustainable. I have leart that keeping myself well is not selfish but very necessary. I enjoy and have benefitted from the zoom courses you run on line. Many thanks for your support.
Maureen
My poor late mother died in September 2018 after suffering from dementia and diabetes.
After she fell and broke her hip we could no longer leave her on her own in her home which she had shared with my late father for 60 years. She never walked again so I had to put her in a nursing home close to where we lived so that I could visit her several times a week. She was unable to speak and this made her life and mine unbearable. She also had needle phobia so her twice a day insulin injections and blood tests several times a day were terrifying for her as she thought that the staff and even myself were going to kill her but she could only cry out every time she saw a needle. The staff were absolutely wonderful but did not know the first thing about diabetes and made several bad mistakes which led to her being taken to hospital in an ambulance and every time I had to go and literally get her discharged back to the nursing home.
I cannot tell you how cruel her life became and I had to watch all this and suffer just as she did. Finally she developed sepsis and when she was finally taken to hospital again, I was told that she could die within a few days. I vowed that she would never die alone in a hospital bed so I asked for her to be taken back to the nursing home where she could die in her own bed and her own private room and I could care for her.
She lasted over a month without any food or water apart from aa few drops passed over her lips by myself or one of the staff. It was horrendous and there are no words to describe how unbearable it all was.
Finally at last she died at 2.45 pm on September 28th surrounded by myself, my partner and some of the staff and it was a blessed relief for everyone.
I have now made a living will stating that I want to die at home or in a hospice because the treatment she endured at the local hospital was horrific and I will not describe it but I was there and it marked me for as long as I live.
Rest in peace my beloved Mam, your suffering is over.
With all my love,
Your daughter Teresa.
After she fell and broke her hip we could no longer leave her on her own in her home which she had shared with my late father for 60 years. She never walked again so I had to put her in a nursing home close to where we lived so that I could visit her several times a week. She was unable to speak and this made her life and mine unbearable. She also had needle phobia so her twice a day insulin injections and blood tests several times a day were terrifying for her as she thought that the staff and even myself were going to kill her but she could only cry out every time she saw a needle. The staff were absolutely wonderful but did not know the first thing about diabetes and made several bad mistakes which led to her being taken to hospital in an ambulance and every time I had to go and literally get her discharged back to the nursing home.
I cannot tell you how cruel her life became and I had to watch all this and suffer just as she did. Finally she developed sepsis and when she was finally taken to hospital again, I was told that she could die within a few days. I vowed that she would never die alone in a hospital bed so I asked for her to be taken back to the nursing home where she could die in her own bed and her own private room and I could care for her.
She lasted over a month without any food or water apart from aa few drops passed over her lips by myself or one of the staff. It was horrendous and there are no words to describe how unbearable it all was.
Finally at last she died at 2.45 pm on September 28th surrounded by myself, my partner and some of the staff and it was a blessed relief for everyone.
I have now made a living will stating that I want to die at home or in a hospice because the treatment she endured at the local hospital was horrific and I will not describe it but I was there and it marked me for as long as I live.
Rest in peace my beloved Mam, your suffering is over.
With all my love,
Your daughter Teresa.
Teresa
In 2015 my wife Chris was diagnosed with Early Onset Alzheimers, at the age of 53, at the time we never even knew this was a thing, I had never even heard about it, I think Early Onset should be highlighted a lot more, it happens to lots of people but it is never mentioned anywhere, we are a family of 5 and at the time we did not have a clue how to deal with it, we managed to look after her till she was 59 when it reached a stage we did not have the skills any more and we realised she needed 24/7 care.
Matt
My partner has been my rock through my illness, I have had a bad time with illnesses. Now he has dementia but he doesn't know. I find it hard to accept it, He hasn't had n illness all his life . I am crying as I am so sad. How can I help him. He is 10 yrs younger than me
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Barbara
I volunteer at a Hospital ward that deals with Dementia and also visit people in the community some have Dementia and others not.It can be rewarding but also ultimately because of the illness it can be heartbreaking.There should be more education about Dementia in the media and from our politicians.A little while ago they thought I had Dementia , but through tests it was proven that I did not and that was a great relief on my part, suddenly I was aware that it could have been me on the ward I volunteer . So I am very aware of the implication of this dreadful illness and more should be done through research and making sure that the lobbying of politicians and people in authority .
WAYNE
I have been full time home caring for my wife for 7 years +.
Upon diagnosis the Memory Clinic said my wife was discharged to the care of her GP as they did not do any follow up checks or care. GP said they did not do any care or checks for a person with dementia, but updated her notes, and my notes as carer. The Local Authority Adult Social Services did a care assessment as requested, but then on financial assessment found my wife would be a "self funder", and so they said "You're on your own" Thus, no care or checks offered, and a social worker would only be allocated if need or crisis arose.
Without training I had to find out about this terminal illness by my own research and attending such courses as some charities organise.
Charity workers and volunteers act as if they care. Doctors, nurses, social workers act as if they are too busy to give time and act as if they'd rather be somewhere else!
The illness that is the biggest killer in modern day Britain and, when it occurs in the family, no health official or organisation (other than charities) offers any guidance. care or help, even though the family carers saves the system enormous time and money. The Government, central and local, the health services take advantage that a family member may care. Care allowance, not applicable to me as a pensioner, is offered at a derisory £2.50 per hour. Absolutely shocking lack of help or care!
Upon diagnosis the Memory Clinic said my wife was discharged to the care of her GP as they did not do any follow up checks or care. GP said they did not do any care or checks for a person with dementia, but updated her notes, and my notes as carer. The Local Authority Adult Social Services did a care assessment as requested, but then on financial assessment found my wife would be a "self funder", and so they said "You're on your own" Thus, no care or checks offered, and a social worker would only be allocated if need or crisis arose.
Without training I had to find out about this terminal illness by my own research and attending such courses as some charities organise.
Charity workers and volunteers act as if they care. Doctors, nurses, social workers act as if they are too busy to give time and act as if they'd rather be somewhere else!
The illness that is the biggest killer in modern day Britain and, when it occurs in the family, no health official or organisation (other than charities) offers any guidance. care or help, even though the family carers saves the system enormous time and money. The Government, central and local, the health services take advantage that a family member may care. Care allowance, not applicable to me as a pensioner, is offered at a derisory £2.50 per hour. Absolutely shocking lack of help or care!
Ralph
My Dad had Alzheimer’s and passed away 2 years ago in a care home. It was horrible to watch my dad suffer and not be able to do anything to help him get better. It was an incredible strain on my mum and also affected her own health. My dad was a fit and healthy man all his life and Alzheimer’s took him away. I miss him terribly.
Debbie
I care for my Father with vascular dementia diagnosed in 2021 and my mother with Alzheimer’s diagnosed 7 months ago however took 18 months for a diagnosis.
I take it every day as it comes. Dad is quiet and stares into space and mum just wants to go home to her mum and dad (her mum passed away over 40 years ago and her father coming up to 40 years) It is heart breaking 💔
I take it every day as it comes. Dad is quiet and stares into space and mum just wants to go home to her mum and dad (her mum passed away over 40 years ago and her father coming up to 40 years) It is heart breaking 💔
Cheryl
Dementia is one of the worst things that can happen to anyone to have your mum not even know who you are is devastating. Every single time you see them they ask who you are. Having to say to your mum that you are their daughter is heartbreaking. There is so much that you want to say to them but you know that next time you will have to say it again as they will forget you again please please put more money into dementia and help people cope with this terrible illness.
Jean
My wife had dementia for 4yrs it started before we realised it got worse and this we'd 18th she died from it. Her brain not knowing to eat or drink. Marion finish drugged as on end of life treatment. We gave to spent more money on research and push the issue. Now my children not our and its not good. Post
Barry
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?