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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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My friend of 60 years has it ,been in a care home for a while and she still knew me at first, now she doesn't ,it's heartbreaking. I can get her to smile now and then...
My Mother had dementia and was in a care home during covid before she died in 2021 .Mum was very active until 2019 when dementia took over not just Mum’s life but...
My Father was first diagnosed with Vascular Dementia...
I have had Alzheimer’s for a few years now. I still live alone - I have a daughter in New Zealand & one in Bristol so neither are very close.
I stopped driving when...
My mum has vascular dementia she has had it for 10...
I don’t have dementia now, but I may well have it in the future.
You likely don’t have dementia now, but you may well have it in the future.
As the leading...
My journey with dementia began early, my Nana was...
When my mum died, we realised my dad was not coping...
To me it’s like my lovely Husband Steve of 48 years...
My mother and father both had dementia. My diagnosis wis Alzheimer’s. I am still at the bottom of the ladder
My mum was my sunshine. She lived a simple ‘no...
Lost my mum to alzimers in Feb 2022 . My mum was 93...
My friend of 60 years has it ,been in a care home for a while and she still knew me at first, now she doesn't ,it's heartbreaking. I can get her to smile now and then but the person I knew and loved has completely gone .I know it's only a matter of time before I lose her and the blank look in her eyes destroys me every time ,the advert on TV is so true, you lose them more than once. She was a very clever,well educated woman now she doesn't even know her own name
june
My Mother had dementia and was in a care home during covid before she died in 2021 .Mum was very active until 2019 when dementia took over not just Mum’s life but the whole family. I now volunteer at the care home where Mum was cared for during her last 19 months. More help is needed at the start of a person being diagnosed with dementia. Not just the person but help to the family. More funding is needed for caring for people not just those in care but at their own homes. When will the government realise the care system can’t cope. People live longer now, so we must make the people of the UK more aware of how hard carers work looking after dementia patients. But with poor wages and very little help for those at home the right support is not always being given. If need be we must take to the streets to make not just the people of the UK aware of the fight against this terrible illness. But wake up this government. Make them give more funding. I feel very strongly about a illness that can affect any one of any age.
Gill
My Father was first diagnosed with Vascular Dementia in his early eighties. Soon after he was also diagnosed with Alzheimer’s.
He had been a Coldstream Guardsman during and for several years free the war.
He could turn his hands to almost anything and was a great handyman,
For many years he nd his wife would drive all over Europe for holidays and visits to friends made during and after the war.
This terrible condition began with forgetfulness and getting lost when out for his daily walk.
Gradually this gentle, incredibly kind man became a bitter, angry man ,
My mother who was a few years younger, and a retired nurse was his care until she was advised that she too would become ill and unable to care for him.
He went into a local nursing home and declined rapidly. His first words to me on my initial visit were “piss off” and later that “the f***ing staff” were trying to poison him. The only swear words I’d ever heard my father used were “bloody hell !”. He lived in this hell for about ten years, we said goodbye to him many times !
Being told that mental stimulation would help a patient, things like reading, showing photographs and listening to their favourite music.
Unfortunately my father was deaf and could barely see by this time, so ‘mental stimulation’ was impossible.
Visiting him was very difficult for me, mainly due to his abject misery, and the sights and sounds in the. Home ! It reminded me of the old fashioned asylums that I’d seen in films, obviously brighter with staff who were kind and doing their best, but the sounds and sight of other patients who were more able bodied were terrible to witness !
My Daddy died two months before his ninety third birthday of ‘End Stage Vascular Dementia’.
He had triple bypass surgery at seventy five, survived, and did all he was told ,to regain his health and fitness. Medicine knew how to mend his body, just until his mind was lost ! This they were unable to mend, and his suffering was heartbreaking to see.
My Mother died within two years, totally broken and with no desire to live without her darling husband.
My greatest fear is that I may also succumb to this hideous disease !
He had been a Coldstream Guardsman during and for several years free the war.
He could turn his hands to almost anything and was a great handyman,
For many years he nd his wife would drive all over Europe for holidays and visits to friends made during and after the war.
This terrible condition began with forgetfulness and getting lost when out for his daily walk.
Gradually this gentle, incredibly kind man became a bitter, angry man ,
My mother who was a few years younger, and a retired nurse was his care until she was advised that she too would become ill and unable to care for him.
He went into a local nursing home and declined rapidly. His first words to me on my initial visit were “piss off” and later that “the f***ing staff” were trying to poison him. The only swear words I’d ever heard my father used were “bloody hell !”. He lived in this hell for about ten years, we said goodbye to him many times !
Being told that mental stimulation would help a patient, things like reading, showing photographs and listening to their favourite music.
Unfortunately my father was deaf and could barely see by this time, so ‘mental stimulation’ was impossible.
Visiting him was very difficult for me, mainly due to his abject misery, and the sights and sounds in the. Home ! It reminded me of the old fashioned asylums that I’d seen in films, obviously brighter with staff who were kind and doing their best, but the sounds and sight of other patients who were more able bodied were terrible to witness !
My Daddy died two months before his ninety third birthday of ‘End Stage Vascular Dementia’.
He had triple bypass surgery at seventy five, survived, and did all he was told ,to regain his health and fitness. Medicine knew how to mend his body, just until his mind was lost ! This they were unable to mend, and his suffering was heartbreaking to see.
My Mother died within two years, totally broken and with no desire to live without her darling husband.
My greatest fear is that I may also succumb to this hideous disease !
Felicity
I have had Alzheimer’s for a few years now. I still live alone - I have a daughter in New Zealand & one in Bristol so neither are very close.
I stopped driving when I was diagnosed because I do not believe that people should continue to drive with Alzheimer’s.
I ride an electric bike to get around; I arrange food delivered from Sainsburys or walk to food stores close by..
I do have organisational glitches !
I recognise that I’m deteriorating but life is still good and often fun …… I have a basket of cakes to share with friends in the park today!
My 2 daughters help me with my finances.
I am perfectly happy at present!
I stopped driving when I was diagnosed because I do not believe that people should continue to drive with Alzheimer’s.
I ride an electric bike to get around; I arrange food delivered from Sainsburys or walk to food stores close by..
I do have organisational glitches !
I recognise that I’m deteriorating but life is still good and often fun …… I have a basket of cakes to share with friends in the park today!
My 2 daughters help me with my finances.
I am perfectly happy at present!
Diana
My mum has vascular dementia she has had it for 10 years. Last year we nearly lost her she got a bug and stopped eating. We called the ambulance as wasn’t getting anywhere with the doctors. They weee really good . They asked me what I really wanted and I said I would like a nurse yo come and see my mum. Eventually they sent out a community nurse who really helped us. She sorted out pads and knickers for my mum who is incontinant and shakes for her to drink to help her recover .
Up until now we feel we had been left to cope and didn’t know who to contact. At one time I felt like I was hitting my head against a brick wall . All of a sudden the doctors wanted to see her !
I was working for the nhs at the time doing 12 hour shifts . I have now given up work and I actually get paid for all the things I do . I wouldn’t have got anything while working. I was burnt out trying to cope. My dad looks after her also and now we have a cater coming in to wash and get her dressed in the morning. I am lucky I am in the position not to work . The carers money bumps up my money as I’m not old enough to get state pension . Just my nhs pension which gets taxed. I don’t think that is right ! It is hard to get carers who look after your mum the way I do . Although the lady who comes in most morning is very good mum likes her. She is lucky to have me . It is suck a cruel disease breaks my heart.
Up until now we feel we had been left to cope and didn’t know who to contact. At one time I felt like I was hitting my head against a brick wall . All of a sudden the doctors wanted to see her !
I was working for the nhs at the time doing 12 hour shifts . I have now given up work and I actually get paid for all the things I do . I wouldn’t have got anything while working. I was burnt out trying to cope. My dad looks after her also and now we have a cater coming in to wash and get her dressed in the morning. I am lucky I am in the position not to work . The carers money bumps up my money as I’m not old enough to get state pension . Just my nhs pension which gets taxed. I don’t think that is right ! It is hard to get carers who look after your mum the way I do . Although the lady who comes in most morning is very good mum likes her. She is lucky to have me . It is suck a cruel disease breaks my heart.
Suzanne
I don’t have dementia now, but I may well have it in the future.
You likely don’t have dementia now, but you may well have it in the future.
As the leading killer of our population statistically, dementia in whatever form it takes, will likely touch us in some way, either through the heartbreak of knowing someone who has been struck down by it, to the frightening prospect of being struck down with it ourselves.
As the years have gone by since the Dementia Moonshot mission was announced in 2019, it now feels as though this particular health crisis is being wilfully forgotten about by Parliament year on year.
It appears to be that No 10’s door has been slammed shut in the faces of all those who are suffering terribly with this disease and those of us who will go on to suffer from it in the future.
I feel that it’s time for this to change, for all of our sakes.
You likely don’t have dementia now, but you may well have it in the future.
As the leading killer of our population statistically, dementia in whatever form it takes, will likely touch us in some way, either through the heartbreak of knowing someone who has been struck down by it, to the frightening prospect of being struck down with it ourselves.
As the years have gone by since the Dementia Moonshot mission was announced in 2019, it now feels as though this particular health crisis is being wilfully forgotten about by Parliament year on year.
It appears to be that No 10’s door has been slammed shut in the faces of all those who are suffering terribly with this disease and those of us who will go on to suffer from it in the future.
I feel that it’s time for this to change, for all of our sakes.
Sean
My journey with dementia began early, my Nana was caring for her mum and me during my parents divorce. i lived with her on and off till I was nearly 8 . At that time (mid 1960s) there was zero understanding of dementia and my Nana Elsie was agonising over the thought that her mum would end up in a 'home'. The agonising guilt and anxiety consumed her life in such a devastating way - I listened to her trying to make sense of my great grandmother's irrational and often violent behaviour which she frequently blamed herself for and following my grandads terminal cancer diagnosis her life was just submerged in caring for others. It was agonising for me when she in turn developed dementia and I cared for her till she had to go into a care home. Dementia scars the lives of the people it touches in the most sensitive and intimate relationships of their lives. The pain of this cannot be overstated, in so many ways it has defined my life. People affected by dementia need more understanding, compassion support and ultimately a cure for this obliterating condition.
Eugenie
When my mum died, we realised my dad was not coping and was then diagnosed with vascular dementia. I cared for him along with working a full time job. After two years, his health was deteriorating and I had to get carers in to help and then after a year I had to make a decision to seek help from a care home. The cost of the care at home and the care home stripped my dad’s bank account. The care home fees were £6k a month. We were forced to sell his home to pay the fees but at least he was safe and being cared for. When I applied for financial help, I was told as a home owner with vascular dementia the only help available was a very small amount towards the fees. The rest was paid for by the sale of his house. I don’t regret this at all, but both my
Mum and dad worked all their life to provide for their retirement which eventually went on care home fees.
I really miss both my mum and dad but wish I could have looked after my dad but work commitments didn’t allow. I have beautiful memories of my parents but the end of my dads life was nothing short of shocking with no real support from the GP or social services.
Mum and dad worked all their life to provide for their retirement which eventually went on care home fees.
I really miss both my mum and dad but wish I could have looked after my dad but work commitments didn’t allow. I have beautiful memories of my parents but the end of my dads life was nothing short of shocking with no real support from the GP or social services.
Pauline
To me it’s like my lovely Husband Steve of 48 years over 1year has gone from a full of life/
full of laughter, and very caring person just GONE! And now I’m living with a complete different person. He looks the same other than his eyes that have died….and that he talks to me sometimes about me which I find very strange. I am not retired as yet but try so very hard to keep our life as normal as possible but each day brings different challenges.
full of laughter, and very caring person just GONE! And now I’m living with a complete different person. He looks the same other than his eyes that have died….and that he talks to me sometimes about me which I find very strange. I am not retired as yet but try so very hard to keep our life as normal as possible but each day brings different challenges.
Jan
My mother and father both had dementia. My diagnosis wis Alzheimer’s. I am still at the bottom of the ladder
Hazel
My mum was my sunshine. She lived a simple ‘no fuss’ life, but she taught me how to love deeply and showed me how to have fun in little things; singing, dancing and laughing. She died on the 5th July 2024 and I miss her terribly. She was diagnosed with Alzheimer’s in 2018 and went into care in September 2020, after my dad had a heart attack and could no longer manage caring for her. It was one of the hardest things I have ever had to do, to tell her she was not able to go home. Over the years, I felt that I lost her many times over as the disease took hold. She lost the ability to speak soon after she went into care. Isolated because of Covid, being stuck in a room by herself for 14 days due to the rules. It felt cruel, but we tried to keep her spirits up by video chatting to say hello. We celebrated when we were allowed to see her after 5 months. It was a happy day. My mum had been unwell for 15 years, but it was a battle to get her any quality support. It felt like her illness took over, and it was a constant push to find the right level of care, but we tried so hard to give her some wonderful days out with her family. The last six months of her life were tough, with two hospital stays, sitting in A&E for 3 days with no beds and nurses not able to manage her complex needs. The care home refused her back and then it became even harder. At her funeral on the 24th July, I wanted to make sure she wasn’t remembered for her illness, as she was so much more than that. We had a beautiful service, I designed a gorgeous order of service, shared forget me nots with everyone who came to say goodbye, played Elvis with afternoon tea (she would have loved it) and looked through all the amazing photos of her life. She is in our house now, in a beautiful sunflower urn, I talk to her most days. It’s hard to not think of what could have been, but it’s wonderful to know what we had. 🌻
Sarah
Lost my mum to alzimers in Feb 2022 . My mum was 93 yrs young . I looked after my mum from the day she was diagnosed in 2015 . 24 hrs a day . But I also worked 3 nights a week . And my mums granddaughter was mums carer when I was in work . Which I carnt thank my niece enough for . Working them 3 nights was my time as other than that wherever I went mum was with me 24/7 Me and mum lived together . Mums alzimers didn’t really progress bad untill abut 3 yrs before she passed . Alzimers impacted my life so much my life was on hold for 7 yrs . But I wouldn’t of had it any other way . No way was I putting my mum in a care home because of alzimers . The government and the social care system needs to invest so much more into early diagnosis and to look after carers and unpaid carers . Which I was an unpaid carer . I adored and loved my mum so so much And still do and i miss mum so so much not a single day goes by without me thinking of her . Sometimes I wish mum was still here with me . But that is me being selfish as I now that those 7 yrs I was mums carer for that they were very precious yrs me and mum together . Mum passed away in her sleep peacefully at home with me and her granddaughter there . The rest of the family didn’t make it on time . I would just like to say that the district nurses were fantastic . Untill you’ve looked after or cared for someone with alzimers / dementia then what I call the outsiders don’t really understand what the person who’s being diagnosed and there carers actually truely go through together . It makes a very very devastating impact on both there lives . The government an social care system really really need to invest invest invest a lot more money into Alzimers / dementia . It is one of the hardest and cruelest disease ever . Love and Miss you MUM Forever 💜💜
Sam
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?