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I loved my mum enormously. I still do, although she...
My story is about my mum she's since passed away with Alzeheimers. I felt the doctors at my mums practice were not interested in Dementia. I wanted information about...
My mother was diagnosed with dementia in 2015, the...
I am confirmed Alzheimer’s and dementia 2 months ago
2 years ago I noticed I was not finishing a conversation with a particular detail. I saw my GP he sent me to...
I was diagnosed last Christmas it was a shock im64 I had a good Specialist I have good medication ihave Dementia and Alzheimer try to be positive I have a supportive...
Both my parents had vascular dementia. It was truly horrible watching them change, lose who they were and ultimately die as a result of the disease. Dad required...
I first suspected my father had dementia six years ago, but he has been resistant to an assessment. At first agreeing to it and then becoming abusive about the whole...
I knew my dad and others in my family line had had some form of dementia... at 73 I was sent to neurologist by family doctor. Getting a diagnosis is hard...blood test...
My son was going through a stressful time and worried about his memory. His GP suggested he try a research project into memory loss . My husband went with him as his...
my 77yo wife developed dementia after two major abdominal operations ( first one due to mis-diagnosis) within three weeks of each other - assumed to have been caused...
I knew something was wrong with my wife. She was getting lost in our own home. Things like asking where the bathroom was, when we have live here for 14 years. On more...
My wife was diagnosed with vascular dementia after a couple of years where her behaviour had become more agitated and her memory was deteriorating.
The medication...
I loved my mum enormously. I still do, although she has now passed away.
I started to notice signs of mum’s dementia quite a while before the GP agreed with me. Mum was very intelligent, and was good at masking her failing memory and inability to complete everyday tasks and activities. The greatest difficulty in getting a diagnosis was mum’s inability / reluctance to recognise or admit that there was anything wrong. This continued throughout her Alzheimer’s journey. I had to find alternative language to encourage her to accept the need to seek help. I certainly couldn’t ever take her to a ‘dementia cafe’. She didn’t really want to mix with groups of people as she found it too confusing, and she wouldn’t allow anyone but me to care for her. However, she experienced bouts of paranoia, which were very stressful for both of us - particularly prior to her diagnosis, as I felt that onlookers might misunderstand what was happening. A diagnosis was key, as I knew that there may come a time when I would need to enlist additional support, and mum needed others to be aware of her circumstances and adjust their behaviour in order to be more empathetic.
When the diagnosis process eventually took place, it was very challenging and stressful, as it involved travelling to hospitals, and a brain scan, which caused a lot of fear and anger in my otherwise lovely mum. I feel it’s important to recognise that some people who experience dementia may not ever recognise or accept it, and that we need to find a way of talking to them which won’t induce fear or frustration. Carers also need more support in relation to finding the least disruptive way of seeking a diagnosis, and we need to acknowledge the physical and emotional toll that caring for a loved one with dementia can have. In my case, it triggered a severe physical reaction that resulted in permanent physical disability. People with dementia need to be supported within their individual familial context, and individual personalities should always be taken into account.
I started to notice signs of mum’s dementia quite a while before the GP agreed with me. Mum was very intelligent, and was good at masking her failing memory and inability to complete everyday tasks and activities. The greatest difficulty in getting a diagnosis was mum’s inability / reluctance to recognise or admit that there was anything wrong. This continued throughout her Alzheimer’s journey. I had to find alternative language to encourage her to accept the need to seek help. I certainly couldn’t ever take her to a ‘dementia cafe’. She didn’t really want to mix with groups of people as she found it too confusing, and she wouldn’t allow anyone but me to care for her. However, she experienced bouts of paranoia, which were very stressful for both of us - particularly prior to her diagnosis, as I felt that onlookers might misunderstand what was happening. A diagnosis was key, as I knew that there may come a time when I would need to enlist additional support, and mum needed others to be aware of her circumstances and adjust their behaviour in order to be more empathetic.
When the diagnosis process eventually took place, it was very challenging and stressful, as it involved travelling to hospitals, and a brain scan, which caused a lot of fear and anger in my otherwise lovely mum. I feel it’s important to recognise that some people who experience dementia may not ever recognise or accept it, and that we need to find a way of talking to them which won’t induce fear or frustration. Carers also need more support in relation to finding the least disruptive way of seeking a diagnosis, and we need to acknowledge the physical and emotional toll that caring for a loved one with dementia can have. In my case, it triggered a severe physical reaction that resulted in permanent physical disability. People with dementia need to be supported within their individual familial context, and individual personalities should always be taken into account.
Louise
My story is about my mum she's since passed away with Alzeheimers. I felt the doctors at my mums practice were not interested in Dementia. I wanted information about why mum was asleep all the time. Was she going into another stage of Dementia. She also kept passing out and had TIAs. The doctor said mum may have Diabetes! She had blood tests nothing mum hadnt got Diabetes. It took a a carer from a day centre mum went to to say mum was in final stages. Also she had vascular Dementia as well. I decided then to become a Dementia Carer I took my Social Care qualification and level 2 and 3 in Dementia care. My gp said I know more about my mums Dementia than him, I felt let down and angry with a doctor saying this. Mum as since passed away she went into a care home for the last 4 years but I did some of her care in the home. I went to feed her everyday. Wash her hair each week. I just think Dr's need to be more understanding and more qualified in this area. More funding definately as well.
Jennifer Jones
My mother was diagnosed with dementia in 2015, the pathway to diagnosis was quite smooth, GP to memory clinic, consultant assessment at home, MRI scan which diagnosed the Dementia and then medication after which my mum attended a day centre called Bright Shadow for dementia doing music and crafts
Funding is needed for The community based groups whether craft or music to help with stimulation and slowing down the process and providing some fun and enjoyment for those living with Dementia is essential as there are some dark and stressful days sometimes
However, my father’s experience was poor, although he had signs of dementia he was never diagnosed. Admitted to hospital a couple of times with promises of being referred and although chased this it never happened this was during the pandemic . Both patents have since died ❤️
The impact on knowing your loved ones have dementia is devastating. Seeing them lose their independence becoming frail, unable to do the things they enjoy is heartbreaking . Both my parents were pillars of the community and had their own business and were very well liked , helping people all the time. They are very much loved and missed by their family ❤️
Funding is needed for The community based groups whether craft or music to help with stimulation and slowing down the process and providing some fun and enjoyment for those living with Dementia is essential as there are some dark and stressful days sometimes
However, my father’s experience was poor, although he had signs of dementia he was never diagnosed. Admitted to hospital a couple of times with promises of being referred and although chased this it never happened this was during the pandemic . Both patents have since died ❤️
The impact on knowing your loved ones have dementia is devastating. Seeing them lose their independence becoming frail, unable to do the things they enjoy is heartbreaking . Both my parents were pillars of the community and had their own business and were very well liked , helping people all the time. They are very much loved and missed by their family ❤️
Josephine white
I am confirmed Alzheimer’s and dementia 2 months ago
2 years ago I noticed I was not finishing a conversation with a particular detail. I saw my GP he sent me to Memory clinic. I went through a list of questions to test memory.
I came out 94 per cent ok.
New appointment 12 months later for same questions and after a head MRI scan. It was found I had one dead Lobe in the centre of my head. This resulted in a consultant visiting me at home.
Then shortly afterwards confirmed with the above. I now have list of activities, and lunch/ cafe dates to fill my time.
Alzheimer’s society have been excellent with help. I am now in my 8th week from confirmation. So early stages, I’m finding myself online looking for food that has a positive effect on my brain and not.
My wife is also keeping an eye on me.
I have to say that it’s a type of disease that creeps up on you so it takes a while before yourself realise or partner can see very small changes. This is where the time from the beginning of symptoms to being obvious before one gets a GP assessment
and then scan and memory clinic. Once that is done things tend to move at a speed according to NHS availability.
2 years ago I noticed I was not finishing a conversation with a particular detail. I saw my GP he sent me to Memory clinic. I went through a list of questions to test memory.
I came out 94 per cent ok.
New appointment 12 months later for same questions and after a head MRI scan. It was found I had one dead Lobe in the centre of my head. This resulted in a consultant visiting me at home.
Then shortly afterwards confirmed with the above. I now have list of activities, and lunch/ cafe dates to fill my time.
Alzheimer’s society have been excellent with help. I am now in my 8th week from confirmation. So early stages, I’m finding myself online looking for food that has a positive effect on my brain and not.
My wife is also keeping an eye on me.
I have to say that it’s a type of disease that creeps up on you so it takes a while before yourself realise or partner can see very small changes. This is where the time from the beginning of symptoms to being obvious before one gets a GP assessment
and then scan and memory clinic. Once that is done things tend to move at a speed according to NHS availability.
Stephen
I was diagnosed last Christmas it was a shock im64 I had a good Specialist I have good medication ihave Dementia and Alzheimer try to be positive I have a supportive family and friends
Julie
Both my parents had vascular dementia. It was truly horrible watching them change, lose who they were and ultimately die as a result of the disease. Dad required extra support, but many carers were not properly trained. Mum's assessment was just before lockdown, so we weren't supported. We were lied to, mum suffered abuse whilst recovering in a care home, but no-one was interested as covid took over. Once home, she didn't want outside help, so that was largely down to me. 161 hours a week for £67, but to pay carers would have cst £3300!! The whole system is wrong. Will I get this too? I have no children to look after me, as I looked after my parents.
Su
I first suspected my father had dementia six years ago, but he has been resistant to an assessment. At first agreeing to it and then becoming abusive about the whole situation. I still do not have a diagnosis and it is not as easy to get someone assessed as it should be. He has finally been advised not to drive, but is not accepting of this either. It is terrifying.
Jane
I knew my dad and others in my family line had had some form of dementia... at 73 I was sent to neurologist by family doctor. Getting a diagnosis is hard...blood test not available in my area. I'd like to see more acceptance and social support. I feel left out sometimes...
Marian
My son was going through a stressful time and worried about his memory. His GP suggested he try a research project into memory loss . My husband went with him as his buddy, a person who knows the patient well enough to answer questions about him. It turned out my son wasn't able to continue with the project. So they asked my husband if he was interested. That is how we discovered my husband does have early dementia, We were aware he forgets things and repeats himself but our GP said he was O.K.. As a result for over 18 months now he has been having monthly infusions, from a very reputable sponsored project, ( we've seen them on T.V and in newspapers) and regular scans etc. We know it isn't the answer to the full problem but we are told it has had some success and we are more than happy to know that it is contributing to a possible future cure. My husband continues to lead a useful and active life. We can only hope that it is helping him too.
kate
my 77yo wife developed dementia after two major abdominal operations ( first one due to mis-diagnosis) within three weeks of each other - assumed to have been caused by the very powerful anesthetics.
we had a notification (july 2023) from our local mental health people that they would visit to assess her in 6months time (jan 2024). they never came. i contacted them (april 2024) and they said our case had been closed?
my wife is bedbound 24/7 with dementia, ileostomy and a club foot (the deformation beginning when she was discharged from hospital july 2023).
i am her carer and do not know whether a formal medical diagnosis is important or not.
we had a notification (july 2023) from our local mental health people that they would visit to assess her in 6months time (jan 2024). they never came. i contacted them (april 2024) and they said our case had been closed?
my wife is bedbound 24/7 with dementia, ileostomy and a club foot (the deformation beginning when she was discharged from hospital july 2023).
i am her carer and do not know whether a formal medical diagnosis is important or not.
richard hindley
I knew something was wrong with my wife. She was getting lost in our own home. Things like asking where the bathroom was, when we have live here for 14 years. On more than one occasion we looked for help from our doctor. All the doctor would do was to carry out a simple memory test. Giving a name and address for my wife to memorise. Which she could manger to do. It took pushing by me to eventually get an appointment with the memory clinic. This was with a very unhelpful woman who eventually agreed to a brain scan. This scan confirmed vascular dementia
Alan
My wife was diagnosed with vascular dementia after a couple of years where her behaviour had become more agitated and her memory was deteriorating.
The medication does not really help and my wife is now refusing to take it. When other people come to see us she can mask her condition really well, which makes it look like she is coping with everyday tasks. It’s been difficult for me seeing her change from the person I married to just a shell of a human being, with no interest in life. I am up at night but get little rest during the day.
The medication does not really help and my wife is now refusing to take it. When other people come to see us she can mask her condition really well, which makes it look like she is coping with everyday tasks. It’s been difficult for me seeing her change from the person I married to just a shell of a human being, with no interest in life. I am up at night but get little rest during the day.
Stuart
Share your diagnosis story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?