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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 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...
My mother Betty was a fabulous cook. She was constantly in the kitchen creating wonderful meals. Her main hobby was making & decorating cakes - birthday cakes for the...
My grandma had dementia, it was awful to witness her deterioration, but worse came, two of my aunts became ill with dementia. It was awful to watch their...
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
My mother Betty was a fabulous cook. She was constantly in the kitchen creating wonderful meals. Her main hobby was making & decorating cakes - birthday cakes for the grandchildren or wedding cakes. My father started to notice out of character behaviour & I too was getting concerned. One day Mum was preparing a meal - sweet & sour pork. She was following a recipe which was next to a curry sauce recipe on the page. The end result was a mixture of all of the ingredients! Mum suffered for 14 years & was a shadow of her former self. Dad suffered alongside her - he cared for her at home as he promised her she would never go into a home.
Dad was my hero. "For better and for worse" was definitely his motto.
Dad was my hero. "For better and for worse" was definitely his motto.
Sue
My grandma had dementia, it was awful to witness her deterioration, but worse came, two of my aunts became ill with dementia. It was awful to watch their deterioration over a period of months and years. My grandmas diagnosis was in the late 1970's I believe, she was always full of fun and happiness. She was a wonderful grandma, adored by all the family. Sad to say two of my aunts, grandma's daughters ended their days with dementia
Anne
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?