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.
My Dad's dementia journey had sadly been a rapid one....
My grandad was a gentle, loving, caring man, the most...
There’s not enough words to explain the pain this...
My husband of 60 years died last year and it is still too painful to record his demise with dementia.
It is a most horrible disease. My wife died last April and had dementia for over 11 years and for the past 6 years I literally did every thing for her on my own . She...
My husband of 60 years died last year. His decline with dementia is still too painful for me to write about.
My 82 year old husband was diagnosed Alzheimers in 2021, started with mild memory loss, repetitive counting of his money and cigarettes, we had an active social life...
Mum was so lucky, dad looked after her till he was 80...
Caring starts a long time before the later stages of...
WHAT YOU NEED TO KNOW ABOUT DEMENTIA ‼️
Our wonderful Mum lived by her Christian values so loving, caring & always supportive of us her 3 children & our Dad,...
My mum has multiple illnesses inc has cancer but said her diagnosis of Alzheimer’s was the worst out of them all, as she feels there is no hope. Whereas even with...
Mum was diagnosed with Alzheimer's dementia just over...
My Dad's dementia journey had sadly been a rapid one. From being fully functional to being in and out of mental health units within weeks.... Finally being diagnosed with Lewy Body. Seeing him absolutely terrified believing he was being targeted by killers. It's just heart breaking. Thankfully he still knows people and still calls me lovey... Something he has always done. I hold this tight in my heart. We're learning to take each visit as it comes as he varies from day to day. I truly hope we learn how to prevent this awful disease.
Emma
My grandad was a gentle, loving, caring man, the most gentle soul to have ever walked this earth. As far as grandad and granddaughter friendship goes ours couldn’t have been stronger. Yes he was my grandad but he was also my best friend, my everything, my real life hero.
Early signs and diagnosis.
One of the early signs that something wasn’t quite right was my grandads forgetfulness. He was always sharp and remembering to get things done but we slowly started to see a pattern of him not being able to carry out simple tasks such as putting his coat on if we were going out. Months went by and we noticed it getting more frequent and that is then when the decision for him to stop driving was put in force.
Looking back now we knew something wasn’t right but I think we was all scared of the word “dementia” and having him diagnosed with this disease. Then that dreaded day came, it hit us hard and scared us all that he had been diagnosed with dementia.
We cried, dwelled on the news, had a cuddle and it never changed who he was, he was still our caring and loving grandad, he never looked different to us.
We done our research on dementia so we could prepare ourselves as much as we could so we was aware of what hurdles we would have to face with my grandad. This is when we started to see him deteriorating, getting frustrated , not wanting to do usual things but it was okay, we understood him and always said “okay, maybe another day” and then just carry out our day as normal.
One thing with my grandad was he wouldn’t be able to remember if he had a cup of tea but one thing he would always remember and talk to us about was the RAF. He would speak for hours about the RAF and that’s when we knew, if he was ever in one of his moods we would speak about him being in the RAF and that would make him calm down again.
We unfortunately had to move my grandad to a home as this disease was taking over and my Nan was struggling being at home not knowing what to do if he was ever upset or angry, she was frightened for him as all she wanted to do was give him a cuddle but when someone with dementia gets anxious or frustrated you just sometimes have to let them get on with what they want to do as hard as it is.
His final years in care.
We then started to notice my grandad going off his food which was never like him as he always loved a cup of tea and biscuits.
Slowly over time grandad deteriorated and started to not recognise us, although he would love putting his hands to our faces and holding our hands. This never changed who he was to us despite the fact he didn’t know who we were but always remembered my Nan, his special wife.
We then sadly lost my grandad 10 days before my birthday in march 2023. We had to prepare for this day but it’s true, nothing can ever prepare you for the day you lose someone so special and close to you. It broke my heart into a million pieces that I would never get to hold his hand, tell him my plans for the future or for him to see me become a mother.
I then fell pregnant with my little girl 8 weeks after losing him and I truly believe he sent her to me as a sign he is always with me.
My Grandad, My Hero, My Everything.
Early signs and diagnosis.
One of the early signs that something wasn’t quite right was my grandads forgetfulness. He was always sharp and remembering to get things done but we slowly started to see a pattern of him not being able to carry out simple tasks such as putting his coat on if we were going out. Months went by and we noticed it getting more frequent and that is then when the decision for him to stop driving was put in force.
Looking back now we knew something wasn’t right but I think we was all scared of the word “dementia” and having him diagnosed with this disease. Then that dreaded day came, it hit us hard and scared us all that he had been diagnosed with dementia.
We cried, dwelled on the news, had a cuddle and it never changed who he was, he was still our caring and loving grandad, he never looked different to us.
We done our research on dementia so we could prepare ourselves as much as we could so we was aware of what hurdles we would have to face with my grandad. This is when we started to see him deteriorating, getting frustrated , not wanting to do usual things but it was okay, we understood him and always said “okay, maybe another day” and then just carry out our day as normal.
One thing with my grandad was he wouldn’t be able to remember if he had a cup of tea but one thing he would always remember and talk to us about was the RAF. He would speak for hours about the RAF and that’s when we knew, if he was ever in one of his moods we would speak about him being in the RAF and that would make him calm down again.
We unfortunately had to move my grandad to a home as this disease was taking over and my Nan was struggling being at home not knowing what to do if he was ever upset or angry, she was frightened for him as all she wanted to do was give him a cuddle but when someone with dementia gets anxious or frustrated you just sometimes have to let them get on with what they want to do as hard as it is.
His final years in care.
We then started to notice my grandad going off his food which was never like him as he always loved a cup of tea and biscuits.
Slowly over time grandad deteriorated and started to not recognise us, although he would love putting his hands to our faces and holding our hands. This never changed who he was to us despite the fact he didn’t know who we were but always remembered my Nan, his special wife.
We then sadly lost my grandad 10 days before my birthday in march 2023. We had to prepare for this day but it’s true, nothing can ever prepare you for the day you lose someone so special and close to you. It broke my heart into a million pieces that I would never get to hold his hand, tell him my plans for the future or for him to see me become a mother.
I then fell pregnant with my little girl 8 weeks after losing him and I truly believe he sent her to me as a sign he is always with me.
My Grandad, My Hero, My Everything.
Chloe
There’s not enough words to explain the pain this cruel disease has caused! My grandads life and soul taken away and we’re just being left alone to deal with this! My gran cares for my grandad and these past few months he’s declined massively! I wish the government and other people could step into our lives and feel the utter devastation dementia/alzhiemers has caused! Since he’s been diagnosed, not once has my gran received any help, we’ve been left to google and try and work out a plan on our own! I urge anyone who has lost/suffered and watched this disease take over to speak up! Share your story💙
Megan
My husband of 60 years died last year and it is still too painful to record his demise with dementia.
Ann
It is a most horrible disease. My wife died last April and had dementia for over 11 years and for the past 6 years I literally did every thing for her on my own . She could not speak, eat or hardly walk and appeared to look pass you. I loved her dearly and still do .
Geoffrey
My husband of 60 years died last year. His decline with dementia is still too painful for me to write about.
Ann
My 82 year old husband was diagnosed Alzheimers in 2021, started with mild memory loss, repetitive counting of his money and cigarettes, we had an active social life he was a very happy chatty person with lots of funny great sayings, over the next year that all declined, he became quite anti social, not joining in conversations just seemed to look like he had lost interest, he seemed to loose interest in me, which was deverstating, we got together in 2008 he talked about everything was full of knowledge, I learnt a lot from him, I could always talk to him and tell him my stories, he always listened, but that all changed, everything just went downhill, I really lost the man I married, he really doesn’t listen has no real interest in most things has trouble concentrating, broke his arm and hip both within 9 months, had delirium seemed to go downhill more after the hip, we decided to do restbite this year but had 5 more falls, luckily no breaks this time, unfortunately his voice has changed almost cannot understand him plus his swallowing had been affected, I cry everyday, we have him in a memory support home, will be taking him home on a weekly basis, it’s deverstating,, this is our story we live it everyday, when they find a cure it will be to late for my husband, it’s a deverstating disease, pls work hard on finding a cure, so many people are affected,, Kim..
Kim
Mum was so lucky, dad looked after her till he was 80 and beyond by making sure they were financially secure.
They went into a care home and lived in an apartment together till dad died.
As I was an ex submariner, my mum was accepted at the Royal Alfred Seafarer's home in Banstead Surrey. The care and protection she received was fantastic.
Thanks for letting me share this xx
They went into a care home and lived in an apartment together till dad died.
As I was an ex submariner, my mum was accepted at the Royal Alfred Seafarer's home in Banstead Surrey. The care and protection she received was fantastic.
Thanks for letting me share this xx
Mark
Caring starts a long time before the later stages of dementia.
My partner Elizabeth was diagnosed with dementia over four years ago: we both have mobility and other challenges.
Thankfully, Elizabeth’s condition has only slowly developed: she can wash and dress herself and feed herself with limited help; she can interact with family and friends; she doesn’t wander and she knows our names; she is not aggressive or moody, does not hallucinate, is not incontinent.
Conversations are less ‘demanding’ and less ‘interesting’ these days and soon forgotten. Any deviation from routine presents challenges with confusion and constant questioning.
My problem?!
I miss my independence. I need to stay alert 24/7. I have to keep a fine balance between doing everything and encouraging Elizabeth in the few home responsibilities that she can still manage – and remembers to do!
I can take short shopping trips but for longer absences need to rely on a 'sitter' (callers and telephones are not answered).
The challenges of living and caring start long before dementia reaches an advanced stage.
The level of stress and sadness take their toll physically and mentally. At last I am looking forward to a short break away knowing that Elizabeth will be well cared for by our daughter; I am hoping that this will do me good. The fact that I get tearful just thinking about a break must surely indicate a build-up of stress/anxiety.
Mark
My partner Elizabeth was diagnosed with dementia over four years ago: we both have mobility and other challenges.
Thankfully, Elizabeth’s condition has only slowly developed: she can wash and dress herself and feed herself with limited help; she can interact with family and friends; she doesn’t wander and she knows our names; she is not aggressive or moody, does not hallucinate, is not incontinent.
Conversations are less ‘demanding’ and less ‘interesting’ these days and soon forgotten. Any deviation from routine presents challenges with confusion and constant questioning.
My problem?!
I miss my independence. I need to stay alert 24/7. I have to keep a fine balance between doing everything and encouraging Elizabeth in the few home responsibilities that she can still manage – and remembers to do!
I can take short shopping trips but for longer absences need to rely on a 'sitter' (callers and telephones are not answered).
The challenges of living and caring start long before dementia reaches an advanced stage.
The level of stress and sadness take their toll physically and mentally. At last I am looking forward to a short break away knowing that Elizabeth will be well cared for by our daughter; I am hoping that this will do me good. The fact that I get tearful just thinking about a break must surely indicate a build-up of stress/anxiety.
Mark
Mark
WHAT YOU NEED TO KNOW ABOUT DEMENTIA ‼️
Our wonderful Mum lived by her Christian values so loving, caring & always supportive of us her 3 children & our Dad, physically, emotionally & practically. Mum had many strong, enduring friendships due to her warmth, kindness & sociability.
This all started to dissipate after her 80th birthday when my brother finally left home exposing how dependent she had become on him. We had to employ carers to look after Mum & her home, which she was very resistant to as an independent & capable woman since our Dad died when she was only 60. Gradually we had to increase Mum’s level of care as the undiagnosed vascular dementia took hold via Bluebird Care with the associated escalating costs!
Mum began to repeat herself & was slowly losing her eyesight. In the midst of all this our brother, Chris was diagnosed with cancer & my daughter, Indigo with autism
Covid then hit just as Mum required 24 hour care. We initially had a carer during the day & a different one at night to cover then a raft of different carers on a longer term basis. Mum had to adapt to sharing her home with these women & adjust to various levels of care. I would fly over to see Mum as restrictions allowed. Even my brother had to be masked up which distressed Mum.
Eventually a fall at home meant Mum ended up in hospital. This precipitated a serious decline in her health. I managed to get Mum straight into a nursing home as she had gone blind, was unable to walk & doubly incontinent‼️The last year of her life was one of existing. The staff looking after her managed to build her weight up & get her into a wheeled chair but although Mum could still listen her communication was mainly noises!
Vascular dementia stripped away my Mum’s ability to function in this world but not her intrinsic essence.
When she passed away last year just before Xmas I knew she was at last at peace. 🕊️
Our wonderful Mum lived by her Christian values so loving, caring & always supportive of us her 3 children & our Dad, physically, emotionally & practically. Mum had many strong, enduring friendships due to her warmth, kindness & sociability.
This all started to dissipate after her 80th birthday when my brother finally left home exposing how dependent she had become on him. We had to employ carers to look after Mum & her home, which she was very resistant to as an independent & capable woman since our Dad died when she was only 60. Gradually we had to increase Mum’s level of care as the undiagnosed vascular dementia took hold via Bluebird Care with the associated escalating costs!
Mum began to repeat herself & was slowly losing her eyesight. In the midst of all this our brother, Chris was diagnosed with cancer & my daughter, Indigo with autism
Covid then hit just as Mum required 24 hour care. We initially had a carer during the day & a different one at night to cover then a raft of different carers on a longer term basis. Mum had to adapt to sharing her home with these women & adjust to various levels of care. I would fly over to see Mum as restrictions allowed. Even my brother had to be masked up which distressed Mum.
Eventually a fall at home meant Mum ended up in hospital. This precipitated a serious decline in her health. I managed to get Mum straight into a nursing home as she had gone blind, was unable to walk & doubly incontinent‼️The last year of her life was one of existing. The staff looking after her managed to build her weight up & get her into a wheeled chair but although Mum could still listen her communication was mainly noises!
Vascular dementia stripped away my Mum’s ability to function in this world but not her intrinsic essence.
When she passed away last year just before Xmas I knew she was at last at peace. 🕊️
Cate
My mum has multiple illnesses inc has cancer but said her diagnosis of Alzheimer’s was the worst out of them all, as she feels there is no hope. Whereas even with cancer there is so much support/treatment available. We need to collectively CHANGE this outcome.
Kerry
Mum was diagnosed with Alzheimer's dementia just over a year ago. A lot has happened since then. Phonecalls, form filling, contact suggestions, all very time consuming, & to be honest, sometimes feeling out of my depth. After 6 weeks of numerous enquiries I have a carer to visit my mum for 1 hour in the evening to see her safely to bed & leave her safe & secure in her own home. She is self funding so support from Social Services is virtually nil, not financial just assessing Mum's needs. Fingers crossed the carer whose first visit will be this evening is accepted by Mum who does'nt understand dementia or it's implications. Mum loves colouring in :-)
Viv
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?