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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My husband died two months ago from Alzheimer’s it has been very hard especially the last two years. I feel everyone’s story and experience is different and to...
I write as a son who has recently lost his mother to...
My husband was diagnosed in 2013 age 70, we did get an early diagnosis and were lucky to have medication that helped to slow thing's down for four years, then came a...
We never got a diagnosis! Although it turns out the GP knew in 2002! I coped with my mums bizarre behavior etc until in June 2005 when I had to break into her house...
I met my Wife Nancy in 1999 We both worked for the...
Getting a dementia diagnosis helped me take back...
We waited a long time for a diagnosis & when eventually referred to the memory clinic my husband was sent for an X-ray.When result came back we met dementia nurse who...
My grandma was diagnosed with vascular dementia, she...
My husband,Brian, was diagnosed with Alzheimer’s at the age of 63. The appointment at the hospital was brief and I had to actually ask the consultant if Brian had...
After at least two years of mental difficulties my father was diagnosed with Alzheimer’s in 1989. He was only 52 and died two years later; he looked 82. At that time...
Both mine & my husbands parents had...
Both my Grandparents suffered with dementia one with...
My husband died two months ago from Alzheimer’s it has been very hard especially the last two years. I feel everyone’s story and experience is different and to tell my story may frighten some people at the start of this journey as theirs maybe easier. Early diagnosis is crucial as one can then access different services. The waiting for help is so difficult as all services are stretch to beyond their capacity and sadly at times one needs instant attention. Even when sectioned there was no places or beds for my husband to go, he finally had pneumonia and was hospitalised. Hospitals are not the right place for dementia patients we need more specialised facilities with dementia trained staff which will help patients and their families
Jean
I write as a son who has recently lost his mother to dementia as she struggled through the last six years of her life.
Mum was only diagnosed in 2020 a month before all the covid restrictions and hence unable to benefit from any sort of interactions with support services.
It was beneficial to be diagnosed since this entitled her to additional benefits but had little impact on any care services. I lived and cared for mum throughout but eventually had to relocate overseas where i was able to guarantee her full time care.
It is so depressing to see all the devastating effects it had. I always questioned how someone could die from dementia but i witnessed it first hand.
Mum was only diagnosed in 2020 a month before all the covid restrictions and hence unable to benefit from any sort of interactions with support services.
It was beneficial to be diagnosed since this entitled her to additional benefits but had little impact on any care services. I lived and cared for mum throughout but eventually had to relocate overseas where i was able to guarantee her full time care.
It is so depressing to see all the devastating effects it had. I always questioned how someone could die from dementia but i witnessed it first hand.
Richard
My husband was diagnosed in 2013 age 70, we did get an early diagnosis and were lucky to have medication that helped to slow thing's down for four years, then came a quiet fast decline, I am his sole carer, he now has no real memory of much, he is incontinent and can just hobble around the home.
Social services were involved last year as he was hospitalised due to septic arthritis, but now we are basically on our own.
I am 82 in June and finding it is getting harder caring for him, it's long hours as he can wake up anytime and his day then starts, there is no care for the carers, if you can afford day care that's ok but £90 + for a few hours is very hard to find, so we just plod on doing our best for our loved ones.
Thank you for the opportunity to write this.
Deborah.
Social services were involved last year as he was hospitalised due to septic arthritis, but now we are basically on our own.
I am 82 in June and finding it is getting harder caring for him, it's long hours as he can wake up anytime and his day then starts, there is no care for the carers, if you can afford day care that's ok but £90 + for a few hours is very hard to find, so we just plod on doing our best for our loved ones.
Thank you for the opportunity to write this.
Deborah.
Deborah
We never got a diagnosis! Although it turns out the GP knew in 2002! I coped with my mums bizarre behavior etc until in June 2005 when I had to break into her house and found her semi conscious on the settee. An ambulance was called & she was taken to hospital. I asked for a phsice assessment as knew we could not go on as we were. That's when it transpired she had vascular dementia & was told your mother needs 24 hour care EMI facilities & we have closed her file because she is self funding. If the family had been told way back maybe we could have planned the future. Instead I had to go through the court of protection. My mother lived 7 years in a care home until 23RD November 2013.
Janet
I met my Wife Nancy in 1999 We both worked for the military. We got married in 2003. By 2005 she had Dementia. She was only 57. We visited the Doctors dozens of time he was treating Nancy for Depression. He said Nancy was far too young to have Dementia. He prescribed depression tablets. (This made her worse) Nancys Daughter and son both are science teachers. Nancys other son Nick was living in Australia by 2005. in 2007 when Nick returned home from Australia the family was so anointed with our Doctor’s don’t give a damn attitude. They wrote a collective letter to the doctor insisting their mum gets a proper assessment. After 15 months of assessment Nancy was diagnosed with Alzheimer’s. This changed my life, I had to learn to be a carer. I took early retirement in 2013 to look after Nancy full time. I ran our local carers group and was involved with the Dementia group. In 2016 I was voted Hull Daily Mail Carer of the year. Nancy sadly passed away in 2018. I worked for EastRiding council for 3 years looking after people living with Dementia. Since 2017 I’ve been the founder and chairman of Together We Care group in East Riding of Yorkshire. Supporting unpaid carers, the cared for and people living with long term health issues. We now of over 80 members in our group. We meet this first and 3rd Friday of each month. 1st Thursday of each month I help run the Market Weighton Dementia Singing group. ( not bad to say my teaches told me I had a voice like a frog. I spend one day a week as a volunteer with Dementia forward. I’ve been a Dementia champion since 2013. I now do talks on supporting people with Dementia. As an ex British Army Parachuter I’m passionate about what I do in life. These days supporting Unpaid Carers and people with Dementia is my life. A lot f my time now is also helping people fill in PIP assessment forms, attendance allowance and Cares allowance forms we’ve had over 60 successful claimed in the last 6 years.
Barry
Getting a dementia diagnosis helped me take back control
A difficult diagnosis journey
I was having difficulty with my short term memory so I made the appointment, and I went on my own to see the GP. They did memory tests, and I wasn’t too successful but that didn’t surprise me.
After being referred to the memory clinic and having an MRI scan, I was told I had mild cognitive impairment (MCI) and that I’d been seen again in six months.
On the follow up appointment My wife and I asked the consultant three times if I have dementia, and he said no. I then received a copy of the letter he sent to my doctor and it said I had mild vascular dementia.
The letter was a complete reversal of what I’d been told verbally.
I rang the hospital and they confirmed the diagnosis. There was no communication from anybody.
My daughter saw from the scan that I’d had a minor stroke. They never told me about that, it was a silent stroke with no other symptoms.
Accepting the diagnosis
I had to accept this is what I have got, I might die sooner than I would have done, so I will enjoy and do what I can while I can.
It was difficult at the time, but I have accepted it.
After the diagnosis there are still unanswered questions and no one can tell you the time scales, so you don’t have an idea and can anticipate what might happen. It was coming to terms about a change in thinking and lifestyle.
I know everyone is different, but it was important to know there would be care for you at whatever stage you are in the process.
You can’t change the thoughts, but you can change how long you spend thinking about them.
If you are worried that your symptoms could be signs of dementia, don’t hesitate and get it checked out.
A difficult diagnosis journey
I was having difficulty with my short term memory so I made the appointment, and I went on my own to see the GP. They did memory tests, and I wasn’t too successful but that didn’t surprise me.
After being referred to the memory clinic and having an MRI scan, I was told I had mild cognitive impairment (MCI) and that I’d been seen again in six months.
On the follow up appointment My wife and I asked the consultant three times if I have dementia, and he said no. I then received a copy of the letter he sent to my doctor and it said I had mild vascular dementia.
The letter was a complete reversal of what I’d been told verbally.
I rang the hospital and they confirmed the diagnosis. There was no communication from anybody.
My daughter saw from the scan that I’d had a minor stroke. They never told me about that, it was a silent stroke with no other symptoms.
Accepting the diagnosis
I had to accept this is what I have got, I might die sooner than I would have done, so I will enjoy and do what I can while I can.
It was difficult at the time, but I have accepted it.
After the diagnosis there are still unanswered questions and no one can tell you the time scales, so you don’t have an idea and can anticipate what might happen. It was coming to terms about a change in thinking and lifestyle.
I know everyone is different, but it was important to know there would be care for you at whatever stage you are in the process.
You can’t change the thoughts, but you can change how long you spend thinking about them.
If you are worried that your symptoms could be signs of dementia, don’t hesitate and get it checked out.
Ian
We waited a long time for a diagnosis & when eventually referred to the memory clinic my husband was sent for an X-ray.When result came back we met dementia nurse who told us he did not have vascular dementia so it must be Alzheimer’s (although he didn’t display the more common side of Alzheimer’s. )He was struggling with his speech. He was put on Alzeimers medication. He was admitted to hospital on another matter a while later where he was diagnosed with Parkinson’s after having a Dat Scan & had to be slowly weened off the Alzheimer’s medication. He died shortly afterwards from Covid being one of the ‘dispensable’ elderly people sent to a care home during the pandemic. I didn’t see him for the last 2 months of his life.
His life would have been so much easier given a proper diagnosis & correct medication. There are many forms of dementure but the dismissive way my husband was diagnosed was disgusting. We never got any help from anywhere.
His life would have been so much easier given a proper diagnosis & correct medication. There are many forms of dementure but the dismissive way my husband was diagnosed was disgusting. We never got any help from anywhere.
Cynthia
My grandma was diagnosed with vascular dementia, she passed away 17 years ago now.
I was her primary carer along side my mum.
At first before her diagnosis we saw her getting more and more confused, argumentative, losing her temper easily.
I convinced my mum to take her to the GP who referred her to a specialist where she was diagnosed.
We saw her deteriorating before our eyes, not taking her medication, not eating , being more confused and so argumentative.
We did get carers in to assist her and my grandad.
She started wandering around the village and we were getting phone calls to collect her from various places
Eventually we had to make the
horrific decision to place her in a
care home after she had
deteriorated and did not
recognise my grandad she thought he was a burglar and threatened him with a knife.
In the care home she deteriorated even more, she did not recognise family including my mum,
I continued to visit every day so she knew me but would cry when I left her
She eventually stopped eating and drinking and was really weak
She had pneumonia and was transferred to hospital where she eventually passed away after never regaining consciousness, surrounded by her family.
She was a very strong lady and she wasn't the woman we all knew when she died .
I was her primary carer along side my mum.
At first before her diagnosis we saw her getting more and more confused, argumentative, losing her temper easily.
I convinced my mum to take her to the GP who referred her to a specialist where she was diagnosed.
We saw her deteriorating before our eyes, not taking her medication, not eating , being more confused and so argumentative.
We did get carers in to assist her and my grandad.
She started wandering around the village and we were getting phone calls to collect her from various places
Eventually we had to make the
horrific decision to place her in a
care home after she had
deteriorated and did not
recognise my grandad she thought he was a burglar and threatened him with a knife.
In the care home she deteriorated even more, she did not recognise family including my mum,
I continued to visit every day so she knew me but would cry when I left her
She eventually stopped eating and drinking and was really weak
She had pneumonia and was transferred to hospital where she eventually passed away after never regaining consciousness, surrounded by her family.
She was a very strong lady and she wasn't the woman we all knew when she died .
Gail
My husband,Brian, was diagnosed with Alzheimer’s at the age of 63. The appointment at the hospital was brief and I had to actually ask the consultant if Brian had Alzheimer’s after a somewhat confusing and blasé talk by the consultant. We left the memory clinic feeling completely lost and cast adrift with no clear instructions on what to do next. We were frightened of the future. Eventually I found out myself about various support groups, men’s group, singing etc. we seem to manage our new life quite well for a time until Brian’s condition worsened and he became violent. He was eventually sectioned, twice, and that was a really scary time. He died in 2017, while still sectioned. We ended up having a post morgen and an inquest as his death was sudden. It appeared he had an anurism that was undectected. I perused social services after his death that there should be a full medical check up on dementia patients that go into sectioned care. You cannot rely on them telling you of any symptoms they may be experiencing. I received no feedback from my questions so am unsure if anything changed.
Our dementia journey was frightening and even now I wish I could have done more but did not have the guidance of where to go for help.
Our dementia journey was frightening and even now I wish I could have done more but did not have the guidance of where to go for help.
Jacqueline Thorpe
After at least two years of mental difficulties my father was diagnosed with Alzheimer’s in 1989. He was only 52 and died two years later; he looked 82. At that time it was hard to get information and for my poor Mum who cared for him to get good respite care. We did get pamphlets from the Alzheimer’s society that were helpful and support from a great community psychiatric nurse but it was a traumatic time for the whole family. He was very surprised by the diagnosis although he hardly spoke at the time he repeated the word Alzheimer often for a while and I think expected a cure. He took part in a research project in London and taking medication did help him cope with the diagnosis but didn’t stop his rapid physical deterioration. I hope that what they learnt from him has helped others. After all the trauma we felt unable to give consent to a post mortem; which at the time was the only way to confirm Alzheimer’s. I am grateful to others who have contributed to research projects which have improved diagnosis of dementia. Having a parent diagnosed with early onset dementia stays with you your whole life. It is strange getting older than he was when he died. I recently had to have a brain scan after a fall and the results did show changes in my brain. Thankfully medical advances can tell me that I do not have Alzheimer’s. I am part of the UK bio bank as I want to contribute to genetic understanding. Diagnosis is the only way we can continue to move forward an find better ways to care for those with dementia- both medically and in the community.
Clare
Both mine & my husbands parents had Alzheimer’s/Dementia, my parents started 1st and initially I was in denial trying to keep them as normal as possible but over time it became clear that it was not possible.
I fought hard with various organisations and it was hard. I vowed I would be their voice no matter what.
I started working in a dementia unit and absolutely loved it, it was the norm for me. My parents where moved into the care home, I honestly believed they would be looked after, something happened to Mum and she went withdrawn, to shorten the story I put a camera in Mums room and immediately notified CQC, all organisations where notified, the camera was found and taken down by management, l lost my job and the care home closed.
I understood everything about how my parents behaved and I was proud to be able to look after them. I just had the ability and understanding to know how to cope
I fought hard with various organisations and it was hard. I vowed I would be their voice no matter what.
I started working in a dementia unit and absolutely loved it, it was the norm for me. My parents where moved into the care home, I honestly believed they would be looked after, something happened to Mum and she went withdrawn, to shorten the story I put a camera in Mums room and immediately notified CQC, all organisations where notified, the camera was found and taken down by management, l lost my job and the care home closed.
I understood everything about how my parents behaved and I was proud to be able to look after them. I just had the ability and understanding to know how to cope
Julia
Both my Grandparents suffered with dementia one with Alzheimer’s and one with vascular dementia. My Grandad went first. My Nan struggled so much and kept him home as long as possible until it was suggested he went into hospital for his medication to be assessed. Scared and confused my Grandad tried to escape and was sectioned under the mental health act and we could not get him out of hospital. He was dead within weeks, incontinent and being sedated as he was a “problem” he died of pneumonia in the end and it broke me completely as I wouldn’t treat my dog the way he was treated in hospital. My Nan she was my life. I helped her with all her documentation and she created a care plan before it was too late. Her wish was to stay home and we paid privately for 24/7 home care which cost over £70k she remained at home until her last breath but the pain and suffering from not knowing where she was and the battles with care providers and social services broke us as a family who also provided care for her 7 days a week on a rota basis. My Mum has now started to become very forgetful and I am struggling to muster the energy to start all over again. It’s been an intense few years and the battle is real. Carers are unsung heroes and the help and support out there is very limited and it’s certainly a bumpy road for all those involved. I do think often how animals have the option for a dignified end to life if they are diagnosed with a terminal illness but humans suffer horrendously.
Helen
Share your diagnosis story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?