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.
Mom was finally diagnosed in October 2022, we knew...
I was diagnosed in April 2012 with Early onset Alzheimer's aged 61.
On top of having to retire early at age 58 due chronic back pain / depression for 30...
My husband was diagnosed with Early Onset Dementia at the age of 59, 4 years ago. We are fortunate to be under the wings of an NHS Research Team, who made the...
My husband, aged 64 had been feeling anxious about forgetting how to do parts of his job and spoke with our GP. He was sent for a brain scan and eventually had the...
My partner is 57 and was diagnosed last July the day before my birthday, I literally felt my blood run cold when they told us. No one else in the family has it so...
When My wonderful wife began exhibiting signs of dementia around eight years ago. Her memory issues were often overshadowed by her osteoarthritis. When the consultant...
We waited seven years for an accurate diagnosis. I...
My mum was diagnosed with dementia in 2018. She had vascular dementia she was 85 when diagnosed and died in 2023. I noticed things weren’t right and took her to the...
My dear Dad had dementia, his condition getting worse. So I went to see my dad at his home, he was not there, he had been taken away to a home . No one had told ,...
My mum Dorothy had a diagnosis by her doctor for...
We noticed things were changing with Mum about 10...
My mother, Betty had Alzheimer's and died 12 years...
Mom was finally diagnosed in October 2022, we knew she had it really for sometime.
After a fall March 2022 the MRI scan showed damage to Moms brain and we then had to wait until October for a Memory clinic appointment they did the questions /cognition ability a week later was diagnosed with Alzheimers & Mixed Vascular dementia. My Nan passed from Alzheimers so we wonder if genetics has played a part and worry for my own cognitive and physical decline if moms passed the cruel genetic disease onto me as first born daughter. I have been care giver to mom ever since we lost dad to terminal glioblastoma brain tumour in the pandemic, once mom lost dad the decline began almost over night, we were glad mom got diagnosed to prove what we feared was true, I then began reading as much as I could from many web sites to help mom on her progression. I have managed to put in moms bungalow lots of mobility items to help keep mom safe , many think its just brain decline, however the physical impact is also so sad as is the cognative decline . #ForACure #Fixthefunding for our loved ones and us family care givers, This disease has been swept under the rug time and time again, attendance allowence & carers allowence needs to be increased to give a better quality of life for our loved ones and family care giver #CHC should be awarded our loved ones with the disease after 2 years of diagnosis should they need it - taking their savings and & home , rightful inheritence that should be given ti the family member written in a legal WILL
so make Dementia /Alzheimers a priority NOW not in a few years times .
After a fall March 2022 the MRI scan showed damage to Moms brain and we then had to wait until October for a Memory clinic appointment they did the questions /cognition ability a week later was diagnosed with Alzheimers & Mixed Vascular dementia. My Nan passed from Alzheimers so we wonder if genetics has played a part and worry for my own cognitive and physical decline if moms passed the cruel genetic disease onto me as first born daughter. I have been care giver to mom ever since we lost dad to terminal glioblastoma brain tumour in the pandemic, once mom lost dad the decline began almost over night, we were glad mom got diagnosed to prove what we feared was true, I then began reading as much as I could from many web sites to help mom on her progression. I have managed to put in moms bungalow lots of mobility items to help keep mom safe , many think its just brain decline, however the physical impact is also so sad as is the cognative decline . #ForACure #Fixthefunding for our loved ones and us family care givers, This disease has been swept under the rug time and time again, attendance allowence & carers allowence needs to be increased to give a better quality of life for our loved ones and family care giver #CHC should be awarded our loved ones with the disease after 2 years of diagnosis should they need it - taking their savings and & home , rightful inheritence that should be given ti the family member written in a legal WILL
so make Dementia /Alzheimers a priority NOW not in a few years times .
Louise
I was diagnosed in April 2012 with Early onset Alzheimer's aged 61.
On top of having to retire early at age 58 due chronic back pain / depression for 30 years.
This additional news, was the last straw. I could not cope with life at this point. If it wasn't for the back up services of CPN and Consultant providing daily contact, I would not be telling my story today.
When I was mentally strong enough, I became involved in helping others in many ways. Volunteer work at Alzheimer's Society and guest speaking.
I now run a self dependent Dementia group promoted by DEEP & Trent Dementia (Nottm).
Friends for Life (Nottm) "Ay'e up mi duck". Now supports 50 people also dealing with Dementia. I was lucky getting early diagnosis and the support I badly needed at this point in my life. There now seems a greatly reduced support system in place.
Let's get the urgent quality support in place, now.!
On top of having to retire early at age 58 due chronic back pain / depression for 30 years.
This additional news, was the last straw. I could not cope with life at this point. If it wasn't for the back up services of CPN and Consultant providing daily contact, I would not be telling my story today.
When I was mentally strong enough, I became involved in helping others in many ways. Volunteer work at Alzheimer's Society and guest speaking.
I now run a self dependent Dementia group promoted by DEEP & Trent Dementia (Nottm).
Friends for Life (Nottm) "Ay'e up mi duck". Now supports 50 people also dealing with Dementia. I was lucky getting early diagnosis and the support I badly needed at this point in my life. There now seems a greatly reduced support system in place.
Let's get the urgent quality support in place, now.!
Steven
My husband was diagnosed with Early Onset Dementia at the age of 59, 4 years ago. We are fortunate to be under the wings of an NHS Research Team, who made the specific diagnosis of Posterior Cortical Atrophy (PCA). The Rare Dementia Support organisation have provided a wealth of information around this condition, which has helped me, as my husband's full time carer, and friends and family, to support his specific needs and as to why he does/can't do certain things, and what is likely to happen in the future. Had we not been under this vital Research Team, I can't begin to imagine how isolated and lonely we would be with very little outside support. To obtain an exact diagnosis with referrals to various support groups is an absolute must for the wellbeing of the sufferer and the carer.
Janine
My husband, aged 64 had been feeling anxious about forgetting how to do parts of his job and spoke with our GP. He was sent for a brain scan and eventually had the memory test at the local Memory clinic. This happened in 2014/15. It was quick and to me shocking. Tom took it well and was happy to know something was not right. At this point he didn't want to start taking any drugs, he didn't totally understand how they could help. He was then sidelined with MCI until I took him back to GP two years later. The memory team then came to our home and persuaded him to accept help from Memantine. We are now 9 years since diagnosis and his downward spiral is just starting.
Pauline
My partner is 57 and was diagnosed last July the day before my birthday, I literally felt my blood run cold when they told us. No one else in the family has it so we’re at a loss as to why he has it. We’d been trying to get a diagnosis for 3 years but they kept saying anxiety and depression. He tried to go back to work 3 times but couldn’t take in new information so the financial implications have been massive. I had to fight for the CT scan that then gave us the devastating diagnosis. We have two boys age 11 and 16. I now care for my partner, two children and work and run a house.
We have a mortgage to pay and bills so I have to keep working. If we had a Council house maybe it would be easier as we’d get help with the mortgage. We are trying to give our boys as normal a life as possible whilst also making sure my partner has the best quality of life, it’s really difficult. We’ve had a bit of help from admiral nurses and Carers Leeds but ultimately we’ve been left to it. Luckily, we have family and friends so I’m grateful for that. My partner is ok at the moment just confused forgetful and loses things constantly. He’s also forgotten how to fix the car, do any DIY (which is really stressful as he keeps trying!) he was so clever and fitted our kitchen and bathroom and worked as engineer for 15 years but all that has gone now. He also had a episode of delerium in January after breaking his leg which was terrifying for him and me. Thankfully, it only lasted 4 days and he’s stable at the moment. It’s the most devastating illness and I wouldn’t wish it on anyone. I don’t know what the future holds for us now so just live each day as it comes.
We have a mortgage to pay and bills so I have to keep working. If we had a Council house maybe it would be easier as we’d get help with the mortgage. We are trying to give our boys as normal a life as possible whilst also making sure my partner has the best quality of life, it’s really difficult. We’ve had a bit of help from admiral nurses and Carers Leeds but ultimately we’ve been left to it. Luckily, we have family and friends so I’m grateful for that. My partner is ok at the moment just confused forgetful and loses things constantly. He’s also forgotten how to fix the car, do any DIY (which is really stressful as he keeps trying!) he was so clever and fitted our kitchen and bathroom and worked as engineer for 15 years but all that has gone now. He also had a episode of delerium in January after breaking his leg which was terrifying for him and me. Thankfully, it only lasted 4 days and he’s stable at the moment. It’s the most devastating illness and I wouldn’t wish it on anyone. I don’t know what the future holds for us now so just live each day as it comes.
Kate
When My wonderful wife began exhibiting signs of dementia around eight years ago. Her memory issues were often overshadowed by her osteoarthritis. When the consultant neurologist recommended that she be referred to the Bristol Brain Center, nothing happened until a year later. Only then because she had fallen and brocken her leg. The doctor caring for her noticed her confusion and chased up the referal. When she was discharged from hospital we finaly got the appointment and diognosis of Alzhiemers desiese. We did then get a full attendance allowance but not a council tax reduction because our son was living with us. The only home help that we had was when the district nurses came to treat her pressure sore.
Peter
We waited seven years for an accurate diagnosis. I wrote a book about our journey over 22 years. It's called "A Bucketful of Patience" and published by Bristol Books CIC.
Tony
My mum was diagnosed with dementia in 2018. She had vascular dementia she was 85 when diagnosed and died in 2023. I noticed things weren’t right and took her to the doctors and asked them to discretely test her they did and she was properly diagnosed by the memory clinic. She never accepted it and the medication given she took for one day and no more after that. She was advised to wear hearing aids at this would help but she refused to wear them and this did not help. I managed her at home during lockdown keeping her house and mine. I got carers in at first once a day and then progressed to four times. She wouldn’t have ready made meals so I would have to cook for the week and the carers would cook the potatoes and fresh vegetables.
She kept falling and after a spell in hospital it was decided to put her in a home. She was upset and kept wanting to come home. I would go in everyday and on Sundays took her out for her usual day out. Just driving her to various places and to my dads grave. In 2023 she spent 6 weeks in hospital after becoming unwell. She had, had a silent heart attack. She was very poorly. She also had macular degeneration and lost her central vision. Treatment in the hospital was diabolical, finding her in her faeces ;nurses trying to feed her while she was asleep and giving her her medication. I gave all the information about her when she went into hospital and it was just ignored. Complaint made to hospital regarding treatment. No care at all. When she came back to the home she never got out of the bed again and just deteriorated. Overtime I requested GP to visit they always refused and asking me “what did I want” there is no empathy from anyone in hospitals or the GP’s. My mother retired from work aged 75 and deserved better respect than she got from the professionals. Thankfully I was with her when she passed and it was very peaceful.
She kept falling and after a spell in hospital it was decided to put her in a home. She was upset and kept wanting to come home. I would go in everyday and on Sundays took her out for her usual day out. Just driving her to various places and to my dads grave. In 2023 she spent 6 weeks in hospital after becoming unwell. She had, had a silent heart attack. She was very poorly. She also had macular degeneration and lost her central vision. Treatment in the hospital was diabolical, finding her in her faeces ;nurses trying to feed her while she was asleep and giving her her medication. I gave all the information about her when she went into hospital and it was just ignored. Complaint made to hospital regarding treatment. No care at all. When she came back to the home she never got out of the bed again and just deteriorated. Overtime I requested GP to visit they always refused and asking me “what did I want” there is no empathy from anyone in hospitals or the GP’s. My mother retired from work aged 75 and deserved better respect than she got from the professionals. Thankfully I was with her when she passed and it was very peaceful.
Maria
My dear Dad had dementia, his condition getting worse. So I went to see my dad at his home, he was not there, he had been taken away to a home . No one had told , I was heart broken.
Mark
My mum Dorothy had a diagnosis by her doctor for vascular dementia. She lived with the condition for 9 years. The first 3 years we managed to support her at home. After a serious fall and fracture we had to move her to a home. Like many when covid came it was very difficult. We nurses her at home for the last 18 months with some wonderful support. I’m currently walking the Camino Frances in Spain to raise awareness for Alzheimer’s Society and fund raising.
James
We noticed things were changing with Mum about 10 years ago when she was 74. Both her and my Dad were adamant there was nothing wrong - this was not the retirement and later life they were expecting. After much insistence by us, they both had a test and Mum had cognitive decline, later to be Alzheimer’s. Dad cared for Mum - she was his wife, his love and would not hear of anyone else helping. Things got progressively worse and Dad finally agreed for Mum to go to a day centre each week and a helper for Mums showers etc. Then covid hit and Mum started to change quite rapidly, crying and very depressed. Dad would call me from the garage as it was the only place he could talk to me in private, in confidence and often shed a tear., something he didn’t want Mum seeing or hearing.
In Feb 2021 Dad died, his heart gave out and he couldn’t cope anymore. It was only after his death that we discovered that he had also been diagnosed with dementia. We can only imagine the anguish this caused him, the father of 3 girls and husband to a beautiful wife, and the realisation that he couldn’t look after us all or fix this.
If we had had an earlier diagnosis, earlier intervention and support, things may have been easier for us all. Dad wouldn’t have had to compromise his love and ask for help as it would have been there.
3 years on, Mum is in a care home, their retirement bungalow sold to pay for her care. Mum and Dad both worked from 16 and 14 years old respectively, never out of work and were the first in their families to be homeowners, something they were immensely proud. This was to be their gift to us but instead we have about a year of funding left. After that, we just don’t know what will happen.
In Feb 2021 Dad died, his heart gave out and he couldn’t cope anymore. It was only after his death that we discovered that he had also been diagnosed with dementia. We can only imagine the anguish this caused him, the father of 3 girls and husband to a beautiful wife, and the realisation that he couldn’t look after us all or fix this.
If we had had an earlier diagnosis, earlier intervention and support, things may have been easier for us all. Dad wouldn’t have had to compromise his love and ask for help as it would have been there.
3 years on, Mum is in a care home, their retirement bungalow sold to pay for her care. Mum and Dad both worked from 16 and 14 years old respectively, never out of work and were the first in their families to be homeowners, something they were immensely proud. This was to be their gift to us but instead we have about a year of funding left. After that, we just don’t know what will happen.
Nicola
My mother, Betty had Alzheimer's and died 12 years ago, aged 84, she was diagnosed approx. 5 or 6 years before, her only assessment consisted of answering questions and adding the numbers on a clock face, which she was unable to do. She was offered medication which had no affect whatsoever and was offered little help, only given the name of a person to contact if worried and at a time she did need help we contacted this person who was on holiday and there was no one covering in her absence.
I worked full time, caring for my mum early morning, teatime and bedtime, paying for carers to come in during the day until I could no longer keep her safe in her own home and I had to put her into a care home, at this stage she was doubly incontinent, couldn't dress or wash herself and she didn't know who any of her family were, but what amazes me is she always remembered the name of her dog and her date of birth.
We were one of the lucky ones as after 3 assessments she was considered to be totally unable to do anything for herself and was awarded the nursing care funding and we were refunded all the care home fees we had paid.
My mother passed away 14 months after entering the care home. It seems to me after all these years there has been little improvement in dementia diagnosis or the help available.
I worked full time, caring for my mum early morning, teatime and bedtime, paying for carers to come in during the day until I could no longer keep her safe in her own home and I had to put her into a care home, at this stage she was doubly incontinent, couldn't dress or wash herself and she didn't know who any of her family were, but what amazes me is she always remembered the name of her dog and her date of birth.
We were one of the lucky ones as after 3 assessments she was considered to be totally unable to do anything for herself and was awarded the nursing care funding and we were refunded all the care home fees we had paid.
My mother passed away 14 months after entering the care home. It seems to me after all these years there has been little improvement in dementia diagnosis or the help available.
Amanda
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?