Dementia Support Line
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Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
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Dementia is a cruel and very difficult illness. We as...
My wife was diagnosed with vascular dementia eight...
I hear the same story every day , but I can never stop loving my dad.
My husband got a diagnosis of mild cognitive impairment in early 2023. They first said it was vascular but changed their minds . I knew they were wrong. Had another...
When my father died aged 94 in 2020, my Mum's growing...
My experience of Dementia is my poor husband Stephen. I try to look back and think when it all began.Firstly I would say he suddenly wasn’t as confident as he’d...
My father passed away in March 2024. His cause of...
M husband was diagnosed with Alzheimers in 2019 although the signs were there at least 2 years before. He is 84, I am 76 and I'm caring for him at home, with the help...
Hello my mum got officially diagnosed with alzheimers...
My Grandma is currently living with dementia and has...
My two closest friends ( over 70 years )were both diagnosed with dementia. . One fortunately died on Christmas Eve 2022 .The other is still
alive and ,very...
Saw Mum deteriorate through the last years of her life.
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
My wife was diagnosed with vascular dementia eight years ago when she kept forgetting things of what she was like back then and now she has been upgraded to mixer dementia as she has declined from the person I knew then now she spends most of the time asleep in the afternoon and very tired in the evening she has a she sometimes forget where she is and starts to talking rubbish as it is hard for me to understand what she is talking about. We recently went to a wedding but she can not remember much about it, she has been having accidents when a sleep and I have had to call on our care team who ar based in the building we live in to come and help to get her clean, I have to feed her at meal time and I not sure how long I have left with her, we have been marriage for 47 years and hope we make it to 50. I enloesed a photo of her now. I have tried to get as much help as I can for her.
Adrian
I hear the same story every day , but I can never stop loving my dad.
Mark
My husband got a diagnosis of mild cognitive impairment in early 2023. They first said it was vascular but changed their minds . I knew they were wrong. Had another assessment in January this year while in hospital and confirmed advanced vascular dementia.
To add to that he also has hydrocephalus ex vacuo. He is totally immobile now and incontinent.
I am his sole carer and no family near me to call on. I have help from a carers agency every morning for half an hour. We can only claim attendance of £297 per month. All carers should be paid more. Am self funding for his care which has eaten up our savings and this worries me.
The local Dementia Support group said they couldn’t help me ( because he wasn’t aggressive or wandering). You aren’t assigned a social worker anymore… I was told it’s only if you need one to arrange respite.
It’s a lonely world behind the door ! No one understands how hard it is.
To add to that he also has hydrocephalus ex vacuo. He is totally immobile now and incontinent.
I am his sole carer and no family near me to call on. I have help from a carers agency every morning for half an hour. We can only claim attendance of £297 per month. All carers should be paid more. Am self funding for his care which has eaten up our savings and this worries me.
The local Dementia Support group said they couldn’t help me ( because he wasn’t aggressive or wandering). You aren’t assigned a social worker anymore… I was told it’s only if you need one to arrange respite.
It’s a lonely world behind the door ! No one understands how hard it is.
Rosemary
When my father died aged 94 in 2020, my Mum's growing 'confusion' increased. It's important to say that Dad was her rock, time-keeper, ears and eyes in those last years. She knew how to tick with him, despite it being her that cooked, cleaned and tended to his growing needs. Dad was diabetic, had heart disease, an aneurism, COPD, gout, skin cancer, and cardiovascular disease. His mind and IQ remained tip top to the end.
On Mum's birthday June 2020, he sang to her from his home hospital bed, 4 days later he passed away quietly, a Marie Curie nurse had stayed with us the night before.
Registered as blind, and hard of hearing during most of her life, Mum had a strange fit about a week after Dad's passing and changed almost overnight. From a strong and able career woman in her youth, she became a child again, reliant on me, her daughter. All this happened during lockdown and there was scant help before, during, or after. There was never a diagnosis, as Mum was able to cockily answer ALL the questions, despite not knowing how to curl her hair any more. It gave the illusion to visitors that she was well in charge of her destiny.
The following year after Dad's death, I was unable to leave Mum for more than an hour or two. I gained no help from social services - nothing - dealing with all the paperwork and being told, without a diagnosis, no-one could help. Mum had already broken and mended her hips, spine and wrist in the last decade and finally she fell when I was in the kitchen, breaking her shin through her skin. When the ambulance came 25 minutes after my call, whilst I grasped her leg in a towel, they noted her heart and pulse also very dodgy - she was taken as an emergency up to St George's Hospital for three weeks just past her 89th birthday.
During the petrol strike and still within the danger zone of covid, I stayed in a nearby hotel and eventually got her home via a hellish journey in a hard seated ambulance. Mum had no idea what was going on and was fiddling with a newly inserted pace-maker. I was coping with ulcerative colitis which was flaring miserably, but I couldn't get in for tests or to tend my own health issues.
The subsequent weeks I had almost no sleep, apart from exhausted desperation. I'd wake to find her incontinent on the carpet next to her bed, or trying to find the cat we didn't own. I sometimes cried until I howled (privately) until friends insisted they take her for a little 'holiday' at a nearby nursing home - some respite - as I had mentally and physically collapsed. I'd always vowed to NEVER put my parents into a home. As the advert on TV goes, I coped with a death every day. There was no let-up.
To say this was one of the worst days of my life is an understatement. but surprisingly Mum took a kindly carer's arm and settled down after a few days. It became evident, to take her back home to live alone with me as her sole carer, would be unwise and unkind to both of us.
Three years on, I've had to sell my parents lovely home, where they spent 65 married years together and I remain in rented accommodation. The family home was to have been mine. I was the only child born 1956 a year after their beautiful wedding. I've not been able to grieve my Dad, we didn't have a funeral (lockdown) and Mum didn't really grasp the loss anyway, apart from one final time when she sat listening their song (Nat King Cole) - hearing aids in and with tears rolling down her face, she stood up and said "Bye Len" and then a lot of her left as well.
Mum still talks to Dad, she just about recognises me as "Matey" or "My girl" and tells him when I arrived to visit. She loves to sing old songs and asks for my voice – as it calms her. I visit nearly every day and, each day, she slips a little more from my grasp - it's all so slow. There is now the fear ahead which comes when she occasionally chokes. She picks her arms until they bleed, then picks them open again. She is liked by the carers for her pleasant manner, is still strong of will, but her voice is like a child's and she has the fears that a child may have.
The photo I've attached is of us both when she'd just entered nursing care and the very last trip out we had together with the care team - three years ago. For dignity, I'll leave it at that.
On Mum's birthday June 2020, he sang to her from his home hospital bed, 4 days later he passed away quietly, a Marie Curie nurse had stayed with us the night before.
Registered as blind, and hard of hearing during most of her life, Mum had a strange fit about a week after Dad's passing and changed almost overnight. From a strong and able career woman in her youth, she became a child again, reliant on me, her daughter. All this happened during lockdown and there was scant help before, during, or after. There was never a diagnosis, as Mum was able to cockily answer ALL the questions, despite not knowing how to curl her hair any more. It gave the illusion to visitors that she was well in charge of her destiny.
The following year after Dad's death, I was unable to leave Mum for more than an hour or two. I gained no help from social services - nothing - dealing with all the paperwork and being told, without a diagnosis, no-one could help. Mum had already broken and mended her hips, spine and wrist in the last decade and finally she fell when I was in the kitchen, breaking her shin through her skin. When the ambulance came 25 minutes after my call, whilst I grasped her leg in a towel, they noted her heart and pulse also very dodgy - she was taken as an emergency up to St George's Hospital for three weeks just past her 89th birthday.
During the petrol strike and still within the danger zone of covid, I stayed in a nearby hotel and eventually got her home via a hellish journey in a hard seated ambulance. Mum had no idea what was going on and was fiddling with a newly inserted pace-maker. I was coping with ulcerative colitis which was flaring miserably, but I couldn't get in for tests or to tend my own health issues.
The subsequent weeks I had almost no sleep, apart from exhausted desperation. I'd wake to find her incontinent on the carpet next to her bed, or trying to find the cat we didn't own. I sometimes cried until I howled (privately) until friends insisted they take her for a little 'holiday' at a nearby nursing home - some respite - as I had mentally and physically collapsed. I'd always vowed to NEVER put my parents into a home. As the advert on TV goes, I coped with a death every day. There was no let-up.
To say this was one of the worst days of my life is an understatement. but surprisingly Mum took a kindly carer's arm and settled down after a few days. It became evident, to take her back home to live alone with me as her sole carer, would be unwise and unkind to both of us.
Three years on, I've had to sell my parents lovely home, where they spent 65 married years together and I remain in rented accommodation. The family home was to have been mine. I was the only child born 1956 a year after their beautiful wedding. I've not been able to grieve my Dad, we didn't have a funeral (lockdown) and Mum didn't really grasp the loss anyway, apart from one final time when she sat listening their song (Nat King Cole) - hearing aids in and with tears rolling down her face, she stood up and said "Bye Len" and then a lot of her left as well.
Mum still talks to Dad, she just about recognises me as "Matey" or "My girl" and tells him when I arrived to visit. She loves to sing old songs and asks for my voice – as it calms her. I visit nearly every day and, each day, she slips a little more from my grasp - it's all so slow. There is now the fear ahead which comes when she occasionally chokes. She picks her arms until they bleed, then picks them open again. She is liked by the carers for her pleasant manner, is still strong of will, but her voice is like a child's and she has the fears that a child may have.
The photo I've attached is of us both when she'd just entered nursing care and the very last trip out we had together with the care team - three years ago. For dignity, I'll leave it at that.
Laura
My experience of Dementia is my poor husband Stephen. I try to look back and think when it all began.Firstly I would say he suddenly wasn’t as confident as he’d always been little things to start with.Stephen and I have been married 56 years we have been together since our teens.When we was planning our Golden Wedding he seemed pleased but on the day he became awkward but once he got there he was fine . We move on now to the first lockdown.It was his Birthday 28th March .2020 we had a nice day nice meal in the evening.He’d been upstairs it was 9 15 when he came down he looked at me and said when was I going home I sad I am home he looked me up and down and said I wasn’t his wife I would have to go and he stood over me.I was crying and rang my eldest son who came straight away .He talked to him before he left he said get him to bed.I said it’s bed time he wouldn’t let me in our bed I went in the other bedroom and cried my eyes out..The next morning he said why was I in there and was very apologetic but next evening the same again.He made me leave the house in the dark and cold pouring rain I went out the front door walked around came in the back dripping.After this he could become aggressive I was scared of him.Our adult Grandaughter stayed with us a couple of nights he was ok with her but she has a demanding job and had to go home.Eventually he went to day care he caused a fuss going in but the carers was wonderfull.He was up in the night every night up and down stairs half dressed frozen as was I.He became aggressive to me I was so scared.His sisters have been really kind.I went to memory lane cafe I tried to do things with him but he was constantly looking for his Mrs he never referred to me as that.In 2022 he went into Woodleigh rest home,for respite of 2 weeks.After 3 days his sisters visited they said his head was down he couldn’t lift it up.I then went I couldn’t be leave how he looked.He’s been in ever since.He became inconsistent at home I was dealing with that.He as settled the staff are lovely he can be awkward but the manage him.The guilt I feel is so awful I visit regularly he is just a shell of the man I knew.I carry on day to day awfull lonely life I just wish we could have lived our old age in pease.I remember my Mum saying you have to be thankful for what you’ve had not what you car to have.Thank You for listening xx sorry I don’t know how to upload
Sylvia
My father passed away in March 2024. His cause of death was vascular dementia and frailty. A lovely friend made him a "fiddle" quilt from some of his things. It was something to both keep him warm and use with gloves, ribbons, a bowtie, pockets, etc. I make quilts too and I work in the quilting industry. So many of our customers help people like my father with a "hug" otherwise called a quilt.
Liz
M husband was diagnosed with Alzheimers in 2019 although the signs were there at least 2 years before. He is 84, I am 76 and I'm caring for him at home, with the help of carers twice a day and a bit longer at weekends. I just feel that my retirement that I worked so hard for is ruined and my future looks bleak. On a daily basis I can only leave him for up to an hour to pop to the shops and I always worry about him when I'm out, whether he will fall or have an accident with his toileting. I'm lucky in some ways as he sleeps a lot and he rarely gets me up in the night but it hurts me so much to see him now, compared to the handsome fit man I married. I have very little help from family, this is our 2nd marriage and the step children rarely help. The loss of freedom is hard to take, my elderly mother is 97 and has just gone into a care home so it's difficult for me to get out and visit her. I know there won't be a cure is his lifetime so I just feel like I'm waiting for him to die. All i can do is to try and look after him at home for as long as I can.
Hazel
Hello my mum got officially diagnosed with alzheimers 3years ago, but I think it was progressing for at least 2/3 years before she would actually accept it was a problem. She was only 67 and I was 35 renting my own house with a 8year old and just turned 2year old so I had my hands full. My mum wasn't safe to live alone anymore she ended up in hospital dehydrated and full of scabs from not washing. I knew there and then she was coming home with me and I was going to care for her,all the right people got involved (EVENTUALLY)and made it happen. I have been a carer for 18years working in care homes, but nobody tells you how lonely it is and how hard it is to watch the person you love most struggle everyday and how family abandon you and your loved one. I suffered for 2years with depression because I had no one to help or turn to, nobody bothered. Thankfully I cut all that out our lives and we moved to a new town and my mum is doing so well and I'm proud that I'm her fulltime carer these times are precious and I enjoy spending every single day with her and caring for her . I wish the government would realise how important carers are and make it easier to access things i had to fight for everything for mum and it wasn't easy but shes my mum and ill always fight for her.
Alaina
My Grandma is currently living with dementia and has been diagnosed for nearly 2 years. She used to live independently as has done for over 40 years, but as a family we had to make the difficult decision to move her to a care home, and taking that independence away from her was a lot to come to terms with. It was one of the worst things i've ever been through and still living through - as no day is the same when you visit a care home.The main thing is she is safe now and has 24/7 care. She is still active at the moment and can recognise us but her speech and general concentration has deteriorated, and we have no idea how long that will last for before she gets worse, but we are making the most of the time that we still have with her. Now she has the care she needs when we do visit and see her the moments are enjoyable and not as stressful and sometimes very comical.
The whole process from the diagnosis to the end stage dementia is so distressing and traumatising for the individual and families, you never think it will happen to you and when it does there is little or no support - without a MASSIVE bill at the the end of it, due to lack of funding.
My heart is with everyone who has ever been touched by dementia and especially the people who are living through it right now. It is not an easy journey at all and until you have experienced the pain and trauma of it all you will never truly understand.
Thank you for raising awareness and sharing :)
The whole process from the diagnosis to the end stage dementia is so distressing and traumatising for the individual and families, you never think it will happen to you and when it does there is little or no support - without a MASSIVE bill at the the end of it, due to lack of funding.
My heart is with everyone who has ever been touched by dementia and especially the people who are living through it right now. It is not an easy journey at all and until you have experienced the pain and trauma of it all you will never truly understand.
Thank you for raising awareness and sharing :)
Laura
My two closest friends ( over 70 years )were both diagnosed with dementia. . One fortunately died on Christmas Eve 2022 .The other is still
alive and ,very reluctantly , is in a care home . She hates it . I can’t see why someone wrote ‘sadly’ of a death after 8 years. I visit occasionally but it is a long journey.. I support Dignity in Dying . Death is not the worst thing.
alive and ,very reluctantly , is in a care home . She hates it . I can’t see why someone wrote ‘sadly’ of a death after 8 years. I visit occasionally but it is a long journey.. I support Dignity in Dying . Death is not the worst thing.
Ann
Saw Mum deteriorate through the last years of her life.
Peter
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?