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Nobody wants to help even now over 12 years since my...
Rita was an active member of her local community who...
My lovely mum was such a happy bubbly person. However slowly she began to withdraw in herself and. became easily confused. ! My stepdad took her to the doctors who...
My dear mum was diagnosed with Alzheimer’s in 2019....
My beautiful mum was diagnosed with vascular dementia...
I cared for my parents firstly helping my mum care for my Dad who had vascular dementia then care on my own for my mum
Despite my employer supporting me ot was v...
My mum was diagnosed with Alzheimer’s in 2018. I first noticed something was wrong when I was visited my with my daughter and she repeatedly picked up a scarf and...
I am an Occupational therapist who worked in Dementia Services for 17 years. I have also watched my maternal grandmother die from Alzheimer’s, my mother is...
My mum was eventually diagnosed with mixed dementia. She was only in her early sixties and my poor dad had to become her carer. She hid her dementia really well and...
My Dad had to wait so long for a diagnosis, my Mom...
I lost my mum to vascular dementia on the 18th of...
My husband Tom showed personality changes & trouble with memory as far back as 2016, but diagnosed with Alzheimers in 2019, after I spoke to our GP, who referred him...
Nobody wants to help even now over 12 years since my mum started with symptoms. It took 5 years to get her diagnosed and that was only because she had a bad fall and broke her elbow. Doctor s and social workers will only help if she is harming herself or others. My dad is her full time career and because our family is coping we can’t get rest bite or care. I love my mum with all my heart but it’s the effect on my dad and family that actually breaks my heart 💔it’s a lottery it should be equal for all when you are faced with this situation regardless of what family you have. The picture is my son and nana walking on beach 2 years ago x
Clare
Rita was an active member of her local community who enjoyed a busy social life. In 2016 that changed.
She started misplacing things and repeating questions during conversations, but initially refused to visit the GP.
In May I asked her GP to do a memory test during a routine appointment ( I will always remember how she glared at me across the room ) Listening to her difficulty answering the test questions that day I knew she had dementia, and things were worse than I had realized.
In July, after blood tests, a course of vitamin b12 and a second memory test ( much worse than the first ) she was referred to Memory Clinic. By now I was doing her shopping and had realized she wasn't eating unless I was there to persuade her.
In September we were seen at Memory Clinic and referred for more tests. By now she had daily carers to help her eat and dress.
In October the Nurse at Memory Clinic reviewed the test results and referred her to the consultant for diagnosis. By now I was living with her as she had started wandering.
In November I rang the Memory Clinic in tears to try and get an earlier appointment ( than January ) She still wasn't on any medication. By now I was looking at care homes as she needed 24 hour care and I was struggling to cope.
In December she saw the consultant and was finally diagnosed with Alzheimer's dementia and commenced treatment. Too late.
On January 1st 2017 she moved into the care home.
In February 2019 she passed away peacefully, surrounded by family.
From first memory test to diagnosis had taken eight months, yet we are constantly told that early diagnosis and treatment is necessary to give the best outcome.
Things need to change.
My name is Annette and Rita was my Mum 💔
She started misplacing things and repeating questions during conversations, but initially refused to visit the GP.
In May I asked her GP to do a memory test during a routine appointment ( I will always remember how she glared at me across the room ) Listening to her difficulty answering the test questions that day I knew she had dementia, and things were worse than I had realized.
In July, after blood tests, a course of vitamin b12 and a second memory test ( much worse than the first ) she was referred to Memory Clinic. By now I was doing her shopping and had realized she wasn't eating unless I was there to persuade her.
In September we were seen at Memory Clinic and referred for more tests. By now she had daily carers to help her eat and dress.
In October the Nurse at Memory Clinic reviewed the test results and referred her to the consultant for diagnosis. By now I was living with her as she had started wandering.
In November I rang the Memory Clinic in tears to try and get an earlier appointment ( than January ) She still wasn't on any medication. By now I was looking at care homes as she needed 24 hour care and I was struggling to cope.
In December she saw the consultant and was finally diagnosed with Alzheimer's dementia and commenced treatment. Too late.
On January 1st 2017 she moved into the care home.
In February 2019 she passed away peacefully, surrounded by family.
From first memory test to diagnosis had taken eight months, yet we are constantly told that early diagnosis and treatment is necessary to give the best outcome.
Things need to change.
My name is Annette and Rita was my Mum 💔
Annette
My lovely mum was such a happy bubbly person. However slowly she began to withdraw in herself and. became easily confused. ! My stepdad took her to the doctors who sent her to be assessed at the hospital . After lots of questions my stepdad was handed a leaflet” living with someone with Alzheimer’s “. That was it!!! So we got in touch with the Alzheimer’s society who right from the start were a wonderful support to all of us ! We felt we were not alone. If only the diagnosis had been quicker and more informative life would have been much easier for everyone.
Sue
My dear mum was diagnosed with Alzheimer’s in 2019. And in our experience the medical profession has limited knowledge and zero empathy with the disease. There urgently needs to be more funding, support and research into this horrific condition.
Claire
My beautiful mum was diagnosed with vascular dementia by a gp she met once. We wanted tests done to see what stage she was at. She never saw a specialist! My mum passed away in March this year, 5 years after the GPS diagnosis. She could no longer take food , fluids. It has been devastating to watch this beautiful, funny, kind, intelligent woman fade away in front of me.
Jo
I cared for my parents firstly helping my mum care for my Dad who had vascular dementia then care on my own for my mum
Despite my employer supporting me ot was v v v tough
Government talks alot about solution but has never engaged woth sufferers and or carers
Despite my employer supporting me ot was v v v tough
Government talks alot about solution but has never engaged woth sufferers and or carers
Gerard
My mum was diagnosed with Alzheimer’s in 2018. I first noticed something was wrong when I was visited my with my daughter and she repeatedly picked up a scarf and told us that it was a special scarf made for her choir. I duly made an appointment with her GP who referred her to the memory clinic and she was given the diagnosis of Alzheimer’s. Other than initial blood tests to rule out any other underlying conditions her diagnosis was based on her answers to a questionnaire. Since her diagnosis I have felt completely alone, lockdown was the worst thing ever as far as I am concerned. Isolated other than a food drop I believe that her condition was expedited due to this.
In relation to support for my mum apart from an
annual check in from the memory clinic it has virtually been none existent. Mum’s reluctance to accept or recognise that she needs support hasn’t helped. The biggest barrier I have now is that mum will have to self fund her care, as I do not have power of attorney and she is no longer has capacity to give this trying to arrange help has been very frustrating. She is currently receiving funded care as an assessment process, but after this she will have to self fund her care and nobody seems to be able to advise me how I can arrange this.
Our experience has been poor, but know of someone else in another part of the country have received better support than we have. My hope is everyone who receives a diagnosis of dementia is provided with a support worker who keeps on touch with the family on a regular basis to ensure that they all receive advice and guidance on how to access support services at every stage of the disease.
In relation to support for my mum apart from an
annual check in from the memory clinic it has virtually been none existent. Mum’s reluctance to accept or recognise that she needs support hasn’t helped. The biggest barrier I have now is that mum will have to self fund her care, as I do not have power of attorney and she is no longer has capacity to give this trying to arrange help has been very frustrating. She is currently receiving funded care as an assessment process, but after this she will have to self fund her care and nobody seems to be able to advise me how I can arrange this.
Our experience has been poor, but know of someone else in another part of the country have received better support than we have. My hope is everyone who receives a diagnosis of dementia is provided with a support worker who keeps on touch with the family on a regular basis to ensure that they all receive advice and guidance on how to access support services at every stage of the disease.
Jenny
I am an Occupational therapist who worked in Dementia Services for 17 years. I have also watched my maternal grandmother die from Alzheimer’s, my mother is currently in care in the advanced stages of Alzheimer’s and, both her sisters died of Alzheimer’s, my brother and I feel like a ticking time bomb, we pray that research will find a treatment or cure, it’s too late for so many of our family but hopefully not for us
Melanie
My mum was eventually diagnosed with mixed dementia. She was only in her early sixties and my poor dad had to become her carer. She hid her dementia really well and was convincing when she said anything even when it wasn't true. The only support my dad had was me. Everything was a real battle. I eventually started attending medical appointments with my mum and dad to try and get them extra support and help. To me every appointment was like they knew nothing about any other appointments, we ended up telling mums journey over and over again without getting anywhere. Mum was then also diagnosed with cancer and dad was given one day a week respite but mum got banned as they couldn't cope with her dementia as it was a more cancer related daycare. We did eventually get another respite care but it came right at the end and by then dad was totally at breaking point. Only now am I finding out how much dad had to deal with and my poor mum died four years ago. Even now, dad is still suffering from all he had to do and it has really changed him.
Lisa
My Dad had to wait so long for a diagnosis, my Mom and myself went through some terrible times before we finally got some help, the government need to help, my Dad had worked hard all his life and deserved better care, he would also have wanted my Mom, his wife of nearly 60 years to have had more help and support.
Lorraine
I lost my mum to vascular dementia on the 18th of January 2024. It felt like I was watching somebody rot from the inside outwards, and have every shred of dignity stripped back in waves until eventually there was nothing left
Barry
My husband Tom showed personality changes & trouble with memory as far back as 2016, but diagnosed with Alzheimers in 2019, after I spoke to our GP, who referred him to our local specialist hospital after an initial memory test. I'm so grateful that we had that facility in Liverpool, as the care coordinators have been so helpful as his condition worsened , also showing concern for me. Diagnosis led to so much information available to me - he remained in denial of any serious issues& understood little as time passed. Sadly Tom died at home 7 months ago, but that diagnosis was invaluable and afforded me so much support in dealing with this cruel condition. I wish the help we had was nationwide, sadly it is not...
Audrey
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?