Dementia Support Line
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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.
My sister and myself started to suspect dementia in our mum around two years before diagnosis. Just repeated conversations to start with and then she began to withdraw...
I looked after my husband Brian for over 4 years...
I wish my husband could write his experience of dementia but he can’t use his laptop, phone or use remote controls. His permanent catheter always causes problems...
I am a carer along with my husband, brother and sister in law for my mother in law, who has now passed away and my father in law who has altzehimers.
We all work full...
I lost my dad to vascular Dementia 4..5 yr ago. It must of been hell for him as it was for all our family I have always had aniiexty but from when my dad got dementia...
9 years and 3 dementia journeys. This awful disease...
My mum was diagnosed with Alzheimer’s at the age of...
My lovely husband of 36 years over three weeks changed from a fit farmer looking after cows and driving tractors to being unable to function. His GP was fantastic ,...
I have looked after my dad (aged 75) all by myself since I was 16. My parents divorced when I was 15 so the responsibility was left to me. I am the youngest of 6 and...
My mum has vascular dementia and has been living in a care home for over 2 years for her own safety. Mum worked from the age of 16 to over 65. She married, raised 2...
Glynnis is my partner of 22yrs . Around 8yrs ago dementia started to rear its ugly head, things went missing and there was a loss of interest in all the things she...
My husband was diagnosed with early onset dementia (PCA) when he was 52. The initial diagnosis was eventually made by his being prescribed some medication (donepezil)...
My sister and myself started to suspect dementia in our mum around two years before diagnosis. Just repeated conversations to start with and then she began to withdraw into herself at social gatherings whereas she was always the life and soul in the past. My mum was finally diagnosed a week after my sister passed away and I then became her carer. My dad was in denial and had no understanding of the difficulties I faced. I muddled through for the next five years with daily visits to ensure she was fed and the household chores were done. There were some very strange behaviours over these years, eating very odd foods in the night and drinking alcohol out of character. She would spend hours folding toilet tissue and hiding it all over the house leaving none in the bathroom. I cared for her alone until she had a fall and from hospital was transferred to full time dementia care home. She died ten weeks later. Dementia still haunts my dreams now, the pain and feelings of helplessness never fade. The government need to address the financing of dementia care homes and see it as the category of disease that needs to be prioritised for more funding for unpaid family carers.
Philippa
I looked after my husband Brian for over 4 years before reluctantly I had to place him into care due to becoming aggressive.He’s been in a care home now for 3 years and he’s now gone to needing 2 care staff to see to all his needs. He is non verbal, double incontinent requiring a hoist, wheelchair, and someone to feed him and make sure he takes fluids.
Babies start like this and progress. He has now deteriorated in a very short space of time and back to babyhood and beyond. I’ve lost the man I married and sometime in the future , no one knows when I will lose him again, This is the cruellest disease known to man
Also this disease is the most misunderstood one in the community and needs to more put out there
Babies start like this and progress. He has now deteriorated in a very short space of time and back to babyhood and beyond. I’ve lost the man I married and sometime in the future , no one knows when I will lose him again, This is the cruellest disease known to man
Also this disease is the most misunderstood one in the community and needs to more put out there
Sylvia
I wish my husband could write his experience of dementia but he can’t use his laptop, phone or use remote controls. His permanent catheter always causes problems with UTIs - his last infection meant nine weeks hospitalisation- he uses a zimmer as his mobility has deteriorated - I’m exhausted and cannot leave him alone at all. He’s only 62. I’ve not had a break since his ‘official diagnosis’ two years ago. My mental and physical wellbeing is at rock bottom - sometimes he has no idea who I am. I feel selfish to want a break but if I don’t get one soon I’ll be no good for him.
Denise
I am a carer along with my husband, brother and sister in law for my mother in law, who has now passed away and my father in law who has altzehimers.
We all work full time and managed their care for over 9 years with private carers.
We had no support from outside organisations as they have money and could afford private care but it has not been easy, we have faced numerous challenges and have seen first hand the pain of watching someone close slowly fade away,
My mother in law sadly died a few weeks ago after an 8 year battle with dementia. My father in law does not remember she has died, he has to relive it daily.
Challenges of having to step up and provide personal care, deal with falls at all hours of the day and night, try to encourage medication, drink and food, deal with managing communication when speaking coherently is no longer an option. Managing fall prevention, lifting aids, finances, shopping, personal care when noise and un recognized carers have to be involved.
Its a heartbreaking illness and is not funded or supported enough.
My mother and father in law have been married over 60 years and thankfully my mother in law died peacefully in bed next to her husband.
We all work full time and managed their care for over 9 years with private carers.
We had no support from outside organisations as they have money and could afford private care but it has not been easy, we have faced numerous challenges and have seen first hand the pain of watching someone close slowly fade away,
My mother in law sadly died a few weeks ago after an 8 year battle with dementia. My father in law does not remember she has died, he has to relive it daily.
Challenges of having to step up and provide personal care, deal with falls at all hours of the day and night, try to encourage medication, drink and food, deal with managing communication when speaking coherently is no longer an option. Managing fall prevention, lifting aids, finances, shopping, personal care when noise and un recognized carers have to be involved.
Its a heartbreaking illness and is not funded or supported enough.
My mother and father in law have been married over 60 years and thankfully my mother in law died peacefully in bed next to her husband.
Joanne
I lost my dad to vascular Dementia 4..5 yr ago. It must of been hell for him as it was for all our family I have always had aniiexty but from when my dad got dementia it trebled I still get bad days you never think you will see your dad been reduced to a baby it was a form of hell I can’t believe what a great job my mam doing looking after dad at 77 yr old she did
Ian
9 years and 3 dementia journeys. This awful disease likes to keep knocking at our door.. I would like to close the door on dementia and finally say goodbye but not for now...we're back in another journey. 2 of the 3 people have passed away - but we've just started again. It's rinse and repeat. Our aunt was the first person we cared for - she's in the picture above. In her early to mid stages, she would share her baking tips and stories of her working in the City and meeting Onassis. Her background made her loving but also as tough as steel when it came to her 24hr care team - she would have none of it :). But she always loved us - even in her most advanced stages, her face always lit up when she saw us. She may have not known 'us' but just knowing she could feel the love, healed a lot of pain. We also know that's not always the case...that is devastating. Her last word at the end of life was 'mummy' - I'm happy they're together again, Forever.
Manjit
My mum was diagnosed with Alzheimer’s at the age of 62. She was a talented hair dressers and spent hours / days talking to people. Covid hit and she had to stop working. After coming out of the first lockdown I was helping her get her diary organised to start back to work again and I noticed she was struggling to understand days and dates. We went to the doctors and after a few tests and in 2021 mum was diagnosed. I definitely think being in lockdown with hardly any contact with people the Alzheimer’s came out in her.
Mum no longer works and I look after her full time. People ask how she is , I tell them mums well but it’s hard.
Anyone caring for someone needs help.
Of all the strange things she does she still has her sense of humour and can be very funny. She loves music and any excuse to dance. She still goes to Salou soul weekend every September with the help of mums friend.
Just because she has Alzheimer’s she still has to do the things she’s loves.
Mums best friend was also diagnosed with Alzheimer’s last year and this is becoming more familiar everyday.
More knowledge of the disease needs to be taught. All the factors of life that can contribute included.
We need to find a cure before things get really bad.
More specialist hospitals are needed
More help for carers especially financial help
I will be by mums side till the end ❤️
Mum no longer works and I look after her full time. People ask how she is , I tell them mums well but it’s hard.
Anyone caring for someone needs help.
Of all the strange things she does she still has her sense of humour and can be very funny. She loves music and any excuse to dance. She still goes to Salou soul weekend every September with the help of mums friend.
Just because she has Alzheimer’s she still has to do the things she’s loves.
Mums best friend was also diagnosed with Alzheimer’s last year and this is becoming more familiar everyday.
More knowledge of the disease needs to be taught. All the factors of life that can contribute included.
We need to find a cure before things get really bad.
More specialist hospitals are needed
More help for carers especially financial help
I will be by mums side till the end ❤️
Nancy
My lovely husband of 36 years over three weeks changed from a fit farmer looking after cows and driving tractors to being unable to function. His GP was fantastic , he was admitted to hospital for tests and I was told he had delusions. He was sent home with no support initially but re-admitted 3 weeks later as his behaviour had worsened and he was not safe to be left. Dementia was not mentioned until I read his discharge letter. He was admitted to an NHS bed for 4months and now lives in a care home. I have found it devastating, the weirdness of having a husband but not knowing from day to day which bit of him will be present that day. The suddenness of the change and having to take on running his business feeling ill equipped to do so. Blessed by the support of his brother but feeling so bad that I can’t manage him at home on my own. I have wonderful friends but the loss of the retirement I expected and the shock of his diagnosis has been very hard to cope with.
I have looked after my dad (aged 75) all by myself since I was 16. My parents divorced when I was 15 so the responsibility was left to me. I am the youngest of 6 and they lived far away. There is little to no support from councils and I really struggled with the emotional and physical burden. I’m now at a stage where I have asked for help and it’s the best thing I’ve ever done! My dad is able to go out everyday with a carer and I’m able to work full time and live my life. I get to be his daughter again not his carer! If I have one piece of advise it is to ask for help! I was scared of what that would look like at my age but now we both get to live better and have a relationship that isn’t full of stress and burden. I am forever grateful to the lessons I have learnt and the part I have played. The government needs to do more to help funding and support. I got offered a two page leaflet and was sent on my way at the age of 16. Still now I have to pay for his care and his finances because there is no help. We should all be able to have our dads but it feels like he has been taken from me before he’s actually gone! I know it’s hard but it does get better I promise !
Saskia
My mum has vascular dementia and has been living in a care home for over 2 years for her own safety. Mum worked from the age of 16 to over 65. She married, raised 2 daughters and obtained an OU degree and had a successful career in the law. Mum no longer remembers me as her daughter and has little memory of her life. I had little support from the NHS and no support from social services as mum had over the threshold in savings. It doesn't matter how much money you have help is essential to the person suffering and the family. I'm a carer by profession and have still found help extremely difficult to find. Dealing with someone with dementia is one of the hardest things you can face.
Liz
Glynnis is my partner of 22yrs . Around 8yrs ago dementia started to rear its ugly head, things went missing and there was a loss of interest in all the things she loved including her family. Unfortunately, she was in denial on anything being wrong. It ended with her being sectioned, a terrible day. She is now safe in a home that is very caring. I still love her and see her most days a shadow of her former wonderful self.
Geoff
My husband was diagnosed with early onset dementia (PCA) when he was 52. The initial diagnosis was eventually made by his being prescribed some medication (donepezil) which I then, having read the enclosed notes, questioned the need for. The Consultant asked me why I thought the meds were necessary, and when I suggested to treat some form of dementia, he agreed. That was the appalling way we found out that he had this pernicious illness. Both of us, together.
He lived with it for 15 years and I cared for him, either completely or partly (even whilst in a care home) all of that time. I did this with virtually no help from family and only a little from friends. Doing so nearly drove me to a breakdown. Dementia tries to take two lives, the person living with it along with his/her primary carer/family member. The effect that this has on families and relationships can be devastating, the impact on working lives, the economy etc when occurring in earlier years is equally disastrous and must change.
This all sounds as if I am bitter, no, far from it. I have a good life now, albeit one without my husband.
It is however, just a plain statement of facts. To stop stories such as this, and others in this article continuing to happen, support, care, research and treatment must be a priority. We are civilised society and should expect no less.
He lived with it for 15 years and I cared for him, either completely or partly (even whilst in a care home) all of that time. I did this with virtually no help from family and only a little from friends. Doing so nearly drove me to a breakdown. Dementia tries to take two lives, the person living with it along with his/her primary carer/family member. The effect that this has on families and relationships can be devastating, the impact on working lives, the economy etc when occurring in earlier years is equally disastrous and must change.
This all sounds as if I am bitter, no, far from it. I have a good life now, albeit one without my husband.
It is however, just a plain statement of facts. To stop stories such as this, and others in this article continuing to happen, support, care, research and treatment must be a priority. We are civilised society and should expect no less.
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?