Dementia Support Line
Share your story
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 wife Linda was diagnosed with early onset...
My nanna suffers with dementia and was diagnosed over 5 years ago, she’s rapidly declined, my grandad couldn’t cope and ultimately gave up looking after hisself to...
Hi am John 47 m I lost my farther 2y ago to dementia...
We have 2 women in our family with Alzheimers with...
A very real, sad, isolating, and heartbreaking...
My dad had Lewi body Dementia, we noticed early on that my dad weren't the same, we could be having a conversation with the family, about something and dad 15 minutes...
My dad has Alzheimer’s and mum has post stroke vascular dementia, they live with myself and my husband. It’s tough, but we wouldn’t have it any other...
My husband was diagnosed in2016 with dementia, we've...
About a year after I had moved away to Canada with my...
Just 3 weeks ago today I lost my Mom to end stage...
My Grandma Rita was fiercely independent and the...
Dementia is a cruel and very difficult illness. We as...
My wife Linda was diagnosed with early onset Alzheimer’s on the 14th of February 2019 when she was 57. For more than a year she had been attending GP appointments and doing memory tests and having a brain scan so that by the time we were officially told it was dementia it was almost a relief. I know that sounds crazy but I did think at the time that now we know what it is we can start to get some kind of help and treatment. The reality was very different. Linda and I were given the prescription for her medication and some leaflets about support groups and she was discharged to the care of her GP. The last few years have been hugely challenging for both of us. I am now my wife’s full time caregiver having retired early from my career in the fire service. Linda has had to deal with losing her mobility to the point where she now is a wheelchair user and her speech is also becoming very difficult.
The biggest thing we are missing out on is spending quality time with our young grandchildren and it grieves me to think of the moments with them that Linda will never know.
The biggest thing we are missing out on is spending quality time with our young grandchildren and it grieves me to think of the moments with them that Linda will never know.
Robert
My nanna suffers with dementia and was diagnosed over 5 years ago, she’s rapidly declined, my grandad couldn’t cope and ultimately gave up looking after hisself to care for her which unfortunately meant we lost him to frailty. My mum and me have looked after her with him and stepped in more after he passed away with most of the other children and grand kids not bothering to help. My mums gone from being a busy manager to working 2 days a week and losing a massive income. I have dropped my working hours to help as my mum was diagnosed with cancer which meant because her siblings wouldn’t help I needed to take on my mums duties around my own. We do what we can to help give my nanna the best few years but it’s hard to hold a conversation anymore as she can’t keep her mind on the chat, and it’s horrible that she feels she’s not visited by someone and feels so lonely when we’re there with her everyday.
Sarah
Hi am John 47 m I lost my farther 2y ago to dementia I still haven’t come to turmes with i suffer from depression now this illness took my dad I had to watch him suffer not knowing hue I was forgetting things it was hell
John
We have 2 women in our family with Alzheimers with dementia. My Mum (89) and my MiL (94).
My Dad (95) looks after my Mum in Notts and my MiL is 10 mins away from us (Harrogate).
Lots of deterioration recently in both. Having to support totally with finances, health, Socials, food, and meds. Alot to do.
My Dad (95) looks after my Mum in Notts and my MiL is 10 mins away from us (Harrogate).
Lots of deterioration recently in both. Having to support totally with finances, health, Socials, food, and meds. Alot to do.
Fiona
A very real, sad, isolating, and heartbreaking reality of Alzheimers is witnessing someone's life and their memories slowly fade and disappear.
In 2020, during the pandemic, Zoe, my Farmor (Dad's mum in Danish) sadly passed away. Zoe had lived with dementia for 10 years at this time.
Lockdowns were difficult and Zoe was isolated. We saw the heartbreaking impact this had on the progression of her dementia and health.
She always remembered us, her closest family. For this we are incredibly grateful and mindful this isn't the reality for many others. However, memories of my grandfather, her life and everday experiences sadly faded.
A poem for Zoe.
My Farmor.
My Grandmother.
..........................................
I know you.
Remember you.
See you and understand you.
Hold my hand and I will guide you.
Shine a spotlight to remind you.
Tell you, show you, hug you, calm you.
Like you have me, throughout my childhood.
..............................................................................
I wish the UK government would draw inspiration from international and creative support initiatives for those diagnosed with dementia, to offer fulfilling and community experiences.
Consider further research, support and education, so families/carers can feel empowered and equipped.
Ask the right questions, learn from lived experience, invite stories and experiences.
....................................................................................
Often we can only relate to the idea of our grandparents, as we have known them throughout our lives.
This beautiful picture of my Farmor Zoe makes me smile, and recognises the entire life she had before I came to the world. Hvor er du smuk! (My, aren't you beautiful!). I see you, remember you, love and understand you.
Farmor, "We'll meet again" (Vera Lynn).
A photo and song to remember you.
In 2020, during the pandemic, Zoe, my Farmor (Dad's mum in Danish) sadly passed away. Zoe had lived with dementia for 10 years at this time.
Lockdowns were difficult and Zoe was isolated. We saw the heartbreaking impact this had on the progression of her dementia and health.
She always remembered us, her closest family. For this we are incredibly grateful and mindful this isn't the reality for many others. However, memories of my grandfather, her life and everday experiences sadly faded.
A poem for Zoe.
My Farmor.
My Grandmother.
..........................................
I know you.
Remember you.
See you and understand you.
Hold my hand and I will guide you.
Shine a spotlight to remind you.
Tell you, show you, hug you, calm you.
Like you have me, throughout my childhood.
..............................................................................
I wish the UK government would draw inspiration from international and creative support initiatives for those diagnosed with dementia, to offer fulfilling and community experiences.
Consider further research, support and education, so families/carers can feel empowered and equipped.
Ask the right questions, learn from lived experience, invite stories and experiences.
....................................................................................
Often we can only relate to the idea of our grandparents, as we have known them throughout our lives.
This beautiful picture of my Farmor Zoe makes me smile, and recognises the entire life she had before I came to the world. Hvor er du smuk! (My, aren't you beautiful!). I see you, remember you, love and understand you.
Farmor, "We'll meet again" (Vera Lynn).
A photo and song to remember you.
Hanne
My dad had Lewi body Dementia, we noticed early on that my dad weren't the same, we could be having a conversation with the family, about something and dad 15 minutes later would pipe up and say something what we were talking about 20 minutes early!
Lewi body dementia, they hallucinate the hands shake, like Parkinsons!
Dad got worse, quite rapidly, he had his shed broken into, and was trying to mend the door, when I got there one day, and he was stood there with a piece of wood in is hand just looking at the door, as he'd forgotten what to do! Then he had pond the pump had stopped, when I asked him why, he said its broke, I think it was because he'd forgotten how to clean out!
As the illness got worse, it was horrendous, dad went out one night in the early hours, I had to go up to there and thought I might have to going looking for him, luckily he had returned, I said dad you can't go out at 2 o'clock in the morning, he looked at my mom, and said I'm fed up with her keeping me in, so I said to my mom you go to bed, and are talk to him, so I just said you can't go out, at that time in the morning, then I said you should be in bed, moms gone to bed, he said as she, can you show me, so he didn't recognise my mom, I just caved in, inside when he said that! Then he would have falls! I took him out one night because he wanted to go out and it was raining, so I managed to get him into the car, because basically he was forgetting how to walk, I took him to his brothers, on the way he said I've won the lottery, and I haven't told your mom yet and I've spent it all, you didn't laugh about it you'd cry.
We got to his brothers, I had a right game getting him out of the car, into the house, they had a hard floor, dad was trying to pick up the pattern off it! Then my Aunty asked him if wanted a drink, he replied are have a larger dash please, he thought he was in the pub I think! I took dad back home, which wasn't easy because I was walking for him, literally picking his legs up for him! The next day, I had to call the support team who dad had seen before, because I didn't know what to do anymore, after they ad gone, dad went upto bed on is own, then shouted to my mom, quick get in the bathroom..he was hallucinating again, I went up and he said to me a load of bikers were smashing all the cars up outside, and he'd got one of them and gave them a smack on the nose!
I was told by the support people, if I thought they were both in danger mom and my dad to phone 999, I had no choice to phone, the ambulance came out, and the paramedic said we ve got 2 choices dad goes to AE and they discharge him next day or give him some of tablets he was on to make him sleep, so I managed to get him upto bed! The next morning mom phoned an ambulance as dad's breathing weren't to good, they took him to hospital, where he couldn't drink or feed himself, so basically dad was just deteriorating rapidly, after 2 to 3 weeks of being in hospital, they were going to send him to a nursing home, on the day he was due to go, the nursing home came to see him, and said he was till to move, and he had only hours left!
My dad passed away on the 14th December 2019, 2 years later his brother died of the same Lewi body dementia!
It destroys you to watch your loved ones fade away 💔
Lewi body dementia, they hallucinate the hands shake, like Parkinsons!
Dad got worse, quite rapidly, he had his shed broken into, and was trying to mend the door, when I got there one day, and he was stood there with a piece of wood in is hand just looking at the door, as he'd forgotten what to do! Then he had pond the pump had stopped, when I asked him why, he said its broke, I think it was because he'd forgotten how to clean out!
As the illness got worse, it was horrendous, dad went out one night in the early hours, I had to go up to there and thought I might have to going looking for him, luckily he had returned, I said dad you can't go out at 2 o'clock in the morning, he looked at my mom, and said I'm fed up with her keeping me in, so I said to my mom you go to bed, and are talk to him, so I just said you can't go out, at that time in the morning, then I said you should be in bed, moms gone to bed, he said as she, can you show me, so he didn't recognise my mom, I just caved in, inside when he said that! Then he would have falls! I took him out one night because he wanted to go out and it was raining, so I managed to get him into the car, because basically he was forgetting how to walk, I took him to his brothers, on the way he said I've won the lottery, and I haven't told your mom yet and I've spent it all, you didn't laugh about it you'd cry.
We got to his brothers, I had a right game getting him out of the car, into the house, they had a hard floor, dad was trying to pick up the pattern off it! Then my Aunty asked him if wanted a drink, he replied are have a larger dash please, he thought he was in the pub I think! I took dad back home, which wasn't easy because I was walking for him, literally picking his legs up for him! The next day, I had to call the support team who dad had seen before, because I didn't know what to do anymore, after they ad gone, dad went upto bed on is own, then shouted to my mom, quick get in the bathroom..he was hallucinating again, I went up and he said to me a load of bikers were smashing all the cars up outside, and he'd got one of them and gave them a smack on the nose!
I was told by the support people, if I thought they were both in danger mom and my dad to phone 999, I had no choice to phone, the ambulance came out, and the paramedic said we ve got 2 choices dad goes to AE and they discharge him next day or give him some of tablets he was on to make him sleep, so I managed to get him upto bed! The next morning mom phoned an ambulance as dad's breathing weren't to good, they took him to hospital, where he couldn't drink or feed himself, so basically dad was just deteriorating rapidly, after 2 to 3 weeks of being in hospital, they were going to send him to a nursing home, on the day he was due to go, the nursing home came to see him, and said he was till to move, and he had only hours left!
My dad passed away on the 14th December 2019, 2 years later his brother died of the same Lewi body dementia!
It destroys you to watch your loved ones fade away 💔
Gary
My dad has Alzheimer’s and mum has post stroke vascular dementia, they live with myself and my husband. It’s tough, but we wouldn’t have it any other way.
Life is hectic (we are still working) and it does impact our family- I share the care with my sister , what would I do without her, and we have carers to help at present- mum and dad have their own annex and some independence, we are lucky.
It’s so sad.
They are/were the hardest working people we have ever known, they built a very successful business and retired. It’s cruel.
Dad is wasting away, mum is getting more forgetful.
The thing is, I know that we are so much more fortunate than others, and I also know how hard it has been/is for us all but it’s such a terrible way to end your life. They are surrounded by us and the grandsons but it’s heartbreaking to think that not everyone has that.
We love them ❤️
Life is hectic (we are still working) and it does impact our family- I share the care with my sister , what would I do without her, and we have carers to help at present- mum and dad have their own annex and some independence, we are lucky.
It’s so sad.
They are/were the hardest working people we have ever known, they built a very successful business and retired. It’s cruel.
Dad is wasting away, mum is getting more forgetful.
The thing is, I know that we are so much more fortunate than others, and I also know how hard it has been/is for us all but it’s such a terrible way to end your life. They are surrounded by us and the grandsons but it’s heartbreaking to think that not everyone has that.
We love them ❤️
Joanne
My husband was diagnosed in2016 with dementia, we've been married 50yrs he is very forgetful won't go anywhere, we went abroad 3/4 times a year, to see our daughter, son in law & grandaugher , but now all that has come to a halt, I care for all his need's, he is very repetitive, he's there but I feel like iv'e lost him,due to his illness, he worked all his life myself & my daughter never wanted for anything, now he's confined to four wall more or less it's heartbreakingnot just for my husband but myself aswell
Maria
About a year after I had moved away to Canada with my family 12 years ago I noticed changes in my mum. Her mood, her interaction with people, her spiteful comments. These were not my mum. She came to visit me in Canada and then I could really see the difference. Sleeping a lot, not coming down for supper, not getting out the car when we were visiting beautiful places. It’ just wasn’t her. Nobody listened and thought mum was being moody and difficult . The Drs said she was depressed. They did a memory test and Mum passed it. Then an MRI confirmed she had dementia. . This took years! 12 years later and we have finally got her in a safe place, somewhere where she is cared for and can enjoy her life again because that’s what was taken away from her. Her happiness and safety. She is like a new person with the right treatment. I have been grieving my mum for the last 10years and I still am but I know she is safe. I just wish she had been supported and diagnosed earlier so she wouldn’t of been so lonely and confused. Drs need to understand the signs and listen to the people around who see what’s going on because my mum put on a good show. She is the most wonderful woman and everyone loves Mo,
Dementia is by far the most painful and saddest thing I have ever experienced. My mum deserved better. The guilt that I have seeing this happens to my mum is sometimes unbearble. I wish more was done for her sooner.
Dementia is by far the most painful and saddest thing I have ever experienced. My mum deserved better. The guilt that I have seeing this happens to my mum is sometimes unbearble. I wish more was done for her sooner.
Alison
Just 3 weeks ago today I lost my Mom to end stage dementia. Ot was the most awful way to die, not knowing anyone, not being able to communicate and being totally reliant on the kindness of others.
As her daughter I can honestly say that I lost my mother years ago, she was in a care home but for the first 2 years she hated being there but gradually progressed to being unable to walk, communicate and go to the toilet. She just existed until she faded away. The effect of this on her family was devastating. Could we have? Should we have? Did we do our best for her? What more could we have done? Yet selfishly every time I went to visit her, I watched her decline and hated going to the home it was like exposing yourself to a form of torture, It was, stressful, traumatic and heartbreaking. There was nothing anyone could do to help her or indeed her family that were dealing with both the mental and physical effects of watching someone you loved being ravished.
Mom lost her home the costs for her 4 years wer c.£450,000 The seemed to be little alternative to putting her into a home. There was little option to an alternative type of care that would've given her a better quality of life. There was absolutely no funding available or any financial support There was no counselling service or support for the family. You really are on your own. Yewt if this had been cancer, heart disease or any other disease it would've been funded by the nhs. The government need to ensure that this disease is treated in the same way as other disabilities and terminal illnesses and financial support and fully funded care is provided.
As her daughter I can honestly say that I lost my mother years ago, she was in a care home but for the first 2 years she hated being there but gradually progressed to being unable to walk, communicate and go to the toilet. She just existed until she faded away. The effect of this on her family was devastating. Could we have? Should we have? Did we do our best for her? What more could we have done? Yet selfishly every time I went to visit her, I watched her decline and hated going to the home it was like exposing yourself to a form of torture, It was, stressful, traumatic and heartbreaking. There was nothing anyone could do to help her or indeed her family that were dealing with both the mental and physical effects of watching someone you loved being ravished.
Mom lost her home the costs for her 4 years wer c.£450,000 The seemed to be little alternative to putting her into a home. There was little option to an alternative type of care that would've given her a better quality of life. There was absolutely no funding available or any financial support There was no counselling service or support for the family. You really are on your own. Yewt if this had been cancer, heart disease or any other disease it would've been funded by the nhs. The government need to ensure that this disease is treated in the same way as other disabilities and terminal illnesses and financial support and fully funded care is provided.
Sandra
My Grandma Rita was fiercely independent and the Matriarch in our crazy family. Italian heritage, she was the BOSS that lived for her family and would move heaven and earth to ensure everyone’s happiness. Her catchphrase “Is everybody happy?” To which we would respond “You bet your life we are!!” would be heard as a daily sing song.
Before Dementia, she was a domiciliary carer and was fiercely passionate for her job and helping others. Her favourite hobbies included travelling the world, hiking, line dancing and spending time with her 9 grandchildren and she wouldn’t be seen dead without her lippy and hairspray!
My Grandma sadly passed away from Dementia 3 years ago, and we saw this cruel disease eat away at her personality, her sense of self and her humour. She still enjoyed music and we would take comfort and joy in seeing her still managing to do a two step with us-funny how she lost her ability to speak to us, but still maintained her rhythm to a tune!
Tragically, she became very unwell during Covid and we were unable to say our goodbyes in person due to the nationwide restrictions in place.
Dementia is a disease that not only affects the individual who has it, but it also penetrates and bruises their loved ones left behind as they watch the person they once loved so fiercely, become an empty shell and a stranger.
Rita, we are sure you are somewhere putting everyone to shame on the dance floor, we miss you xxx
Before Dementia, she was a domiciliary carer and was fiercely passionate for her job and helping others. Her favourite hobbies included travelling the world, hiking, line dancing and spending time with her 9 grandchildren and she wouldn’t be seen dead without her lippy and hairspray!
My Grandma sadly passed away from Dementia 3 years ago, and we saw this cruel disease eat away at her personality, her sense of self and her humour. She still enjoyed music and we would take comfort and joy in seeing her still managing to do a two step with us-funny how she lost her ability to speak to us, but still maintained her rhythm to a tune!
Tragically, she became very unwell during Covid and we were unable to say our goodbyes in person due to the nationwide restrictions in place.
Dementia is a disease that not only affects the individual who has it, but it also penetrates and bruises their loved ones left behind as they watch the person they once loved so fiercely, become an empty shell and a stranger.
Rita, we are sure you are somewhere putting everyone to shame on the dance floor, we miss you xxx
Amy
Dementia is a cruel and very difficult illness. We as a family care for our Mum who is aged 88 and has vascular and mixed dementia.
This was diagnosed 4 years ago when she suffered a personal crisis. Then 3 years ago she had a stroke that she has recovered really well from with our care and some really good NHS physiotherapy.
My Dad who is aged 89 is often at breaking point, often concerned about coping with Mum, her demands, her anger, her frustration, her walk abouts, her sometimes aggressive and nasty outbursts.
Dad doesn’t want anyone else other than us his family to help.
He doesn’t ask for help from their GP because he just isn’t happy with how they are treated. Mum also has Crohn’s disease and an ileostomy and yet still isn’t considered vulnerable or a case where local authorities would prioritise her care - this means that any care would not be paid for and we would have to fund it ourselves.
It is getting worse week by week and we all know enough about Dementia to know it will continue to get worse.
Sometimes Mum doesn’t know how many children she has had. She can’t now remember her grown up grandchildren, her great grandchildren or their names or who belongs to who.
She asked me today how my boyfriend is and I’ve been married to Steve for 43 years!
She will often ask me who are her children.
It honestly leaves us all at breaking point some days as it’s such a cruel illness. We know it’s the condition and not our Mums fault.
Mum knows we all love her apart from the bad days when the red mist is down.
I took her shopping and for some lunch today for some new clothes and the reality is that tomorrow ( or after an hour or so) she won’t know where the new clothes have come from let alone what a lovely few hours we had together. And she might not even like the clothes tomorrow and want them all taken back.
Looking after our parents is a huge concern for us as a family and we all do things we never ever thought we would have to - just to help with Mums condition.
By adding ‘our story’ to the Dementia page we hope that if we everyone shouts loud enough - the Government will listen.
This was diagnosed 4 years ago when she suffered a personal crisis. Then 3 years ago she had a stroke that she has recovered really well from with our care and some really good NHS physiotherapy.
My Dad who is aged 89 is often at breaking point, often concerned about coping with Mum, her demands, her anger, her frustration, her walk abouts, her sometimes aggressive and nasty outbursts.
Dad doesn’t want anyone else other than us his family to help.
He doesn’t ask for help from their GP because he just isn’t happy with how they are treated. Mum also has Crohn’s disease and an ileostomy and yet still isn’t considered vulnerable or a case where local authorities would prioritise her care - this means that any care would not be paid for and we would have to fund it ourselves.
It is getting worse week by week and we all know enough about Dementia to know it will continue to get worse.
Sometimes Mum doesn’t know how many children she has had. She can’t now remember her grown up grandchildren, her great grandchildren or their names or who belongs to who.
She asked me today how my boyfriend is and I’ve been married to Steve for 43 years!
She will often ask me who are her children.
It honestly leaves us all at breaking point some days as it’s such a cruel illness. We know it’s the condition and not our Mums fault.
Mum knows we all love her apart from the bad days when the red mist is down.
I took her shopping and for some lunch today for some new clothes and the reality is that tomorrow ( or after an hour or so) she won’t know where the new clothes have come from let alone what a lovely few hours we had together. And she might not even like the clothes tomorrow and want them all taken back.
Looking after our parents is a huge concern for us as a family and we all do things we never ever thought we would have to - just to help with Mums condition.
By adding ‘our story’ to the Dementia page we hope that if we everyone shouts loud enough - the Government will listen.
Angela
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?