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Both my parents had dementia but my mum declined more...
![DAW supporter](/sites/default/files/styles/user_story_mobile/public/media/images/image/2024-05/IMG_7723-portrait.jpg?itok=hmqphnkU)
My mum was diagnosed 4 years ago and it’s the...
Hello, I try to put my story of "Self Diagnosis" being "Have I got dementia?"
I start with two facts:
a) My Mother was as I am at this age, 70's onwards, my father...
It took two years to get a diagnosis for my lovely husband. It devastated our family. we get a call every 8 weeks to see how we are getting on from AGE UK I take Brian...
GP was totally ineffective prior to my dads diagnosis.Signs were there and instead of the GP proactively doing something about it they did nothing. After phone calls...
My elder sister was eventually diagnosed with early-onset dementia in 2000, six years after her symptoms began when she was 54. I battled to get her onto medication,...
![](/sites/default/files/styles/user_story_mobile/public/webform/user_stories/IMG_0120.jpeg?itok=C2oIPmbw)
I was 14 when my dad was diagnosed and it was so...
I was told I had vascular dementia after an MRI scan of my brain, having a stroke about a year before. I was given information about how to cope, which was very...
![Dementia Action Week supporter](/sites/default/files/styles/user_story_mobile/public/media/images/image/2024-05/IMG_0218-portrait.jpg?itok=nrp_RK7p)
My husband was diagnosed with Alzheimer’s in 2012...
![DAW supporter](/sites/default/files/styles/user_story_mobile/public/media/images/image/2024-05/IMG_2659-portrait.jpg?itok=jeH0qEZb)
My husband had vascular dementia for which there is...
![](/sites/default/files/styles/user_story_mobile/public/webform/user_stories/IMG_3452.jpeg?itok=k1AAFgQi)
My parents lived at home together. My Dad had other...
My family and I noticed changes in my wife's usually smart mental capabilities in 2015 and despite having two poor results for memory tests conducted by our GPs it...
![](/sites/default/files/styles/user_story_lightbox_mobile/public/webform/user_stories/1000002970.jpg?itok=c5F1Q7pe)
Both my parents had dementia but my mum declined more rapidly. The diagnosis appointment was stressful as they nearly cancelled us at the last minute. We felt a number that was next on the list. Mum was offered medication but soon after starting her eating and wellbeing became an issue and she was very depressed. We took her off the medication as we didn't know if this was part of the problem. It was only over a period of 5 years that mum forgot how to cook, drive, keep herself safe, look after herself and my dad and evtuallly lost the ability to talk and walk which was devastating as she had always been a very active person. I asked for help from Admiral nurses but that wasn't possible in her area and the Societys just kept telling me to read more online, all I wanted to do was talk to someone who could help me cope with this dramatic change. We employed a carer who helped us through covid and later managed to ensure mum attended activity centres twice a week. When my dad died I moved my mum near me to a care home with dementia support. She spent two years there being cared for and I was able to spend time with her, take her for pub lunches and join in the home activities. The dementia deteriorated to the point that mum stopped sitting up and eventually eating, she died last year in the care home. I still feel bewildered about how difficult I found it to talk to any one face to face or on the phone that really understood dementia and the impact of how quickly my mum deteriorated. Even hospital staff were too busy to take the time to talk, I would really have appreciated dementia support when mum was admitted to hospital, we were just left and plainly told she was on end of life care. Children of parents with dementia need to know that someone can explain how dementia affects the wider family and coping strategies.
Caroline
![DAW supporter](/sites/default/files/styles/user_story_lightbox_mobile/public/media/images/image/2024-05/IMG_7723-portrait.jpg?itok=OCUHYzDo)
My mum was diagnosed 4 years ago and it’s the hardest thing ever that I have had to deal with. We are best friends and now I feel I’ve lost not only my mum but my best friend.
Lorraine
Hello, I try to put my story of "Self Diagnosis" being "Have I got dementia?"
I start with two facts:
a) My Mother was as I am at this age, 70's onwards, my father just took over caring for her so, condition not investigated by NHS & etc.
She died in her mid 90's having a "Complete loss of identity" though official cause of death was Pneumonia!
b) I have Asperger's Syndrome, that is, for me, like having two brains, one observing the other.
Non-the-less, I've had a varied and interesting life, in engineering, computing and voluntary work.
I live alone and have done so since 1999
Troubling Times Start:
Was it a year back, maybe more that I started to realise I could not remember "Yesterday", or what I had just done, my Asperger's was telling me "Forgotten something" (Don't know what) or "What did I do just now?"
I asked Doctor what was wrong with me, I had next to no response, mainly based around "At your age..." etc.
Again and Again I've asked that question until finally, approx 8 months back I had an appointment for a MRI of my brain and what an awful experience it was, resulted in a "Blurred Image" and no real result.
Back to doctor for results, garbled reply and "I want it done again in Leicester and Not Burton -on-Trent"...
That, after 8 or so months, is to happen on Monday!
However, what I do want to point out...
It is extremely difficult to have a diagnosis of Dementia when you are alone!
After all, if you have Dementia then, by assocation, you've "Lost your memory" so you are unable to realise "Something Wrong" and ask for a diagnosis!
I start with two facts:
a) My Mother was as I am at this age, 70's onwards, my father just took over caring for her so, condition not investigated by NHS & etc.
She died in her mid 90's having a "Complete loss of identity" though official cause of death was Pneumonia!
b) I have Asperger's Syndrome, that is, for me, like having two brains, one observing the other.
Non-the-less, I've had a varied and interesting life, in engineering, computing and voluntary work.
I live alone and have done so since 1999
Troubling Times Start:
Was it a year back, maybe more that I started to realise I could not remember "Yesterday", or what I had just done, my Asperger's was telling me "Forgotten something" (Don't know what) or "What did I do just now?"
I asked Doctor what was wrong with me, I had next to no response, mainly based around "At your age..." etc.
Again and Again I've asked that question until finally, approx 8 months back I had an appointment for a MRI of my brain and what an awful experience it was, resulted in a "Blurred Image" and no real result.
Back to doctor for results, garbled reply and "I want it done again in Leicester and Not Burton -on-Trent"...
That, after 8 or so months, is to happen on Monday!
However, what I do want to point out...
It is extremely difficult to have a diagnosis of Dementia when you are alone!
After all, if you have Dementia then, by assocation, you've "Lost your memory" so you are unable to realise "Something Wrong" and ask for a diagnosis!
Aleyn
It took two years to get a diagnosis for my lovely husband. It devastated our family. we get a call every 8 weeks to see how we are getting on from AGE UK I take Brian to a centre once a week which we pay for that is my time 5 hours a week & all I want to do is get some rest....... it's very hard. If I could afford to take Brian another day I would! Family help when they can. it's lonely for the carer & takes over your life.
Jean
GP was totally ineffective prior to my dads diagnosis.Signs were there and instead of the GP proactively doing something about it they did nothing. After phone calls from my sister and myself a plan of action was put in place. This was four months after first phone calls were made. Dads behaviour had been strange for years before and the GP knew about it, but did nothing. Psychiatrist diagnosed dad with dementia, paranoia and psychosis. Diagnosis is very important as it enables families to care for their loved one better and hopefully get some help. People should not have to fight for a diagnosis and should not have to sell their homes to pay for care. That’s heartbreaking for families.
Paula
My elder sister was eventually diagnosed with early-onset dementia in 2000, six years after her symptoms began when she was 54. I battled to get her onto medication, having spoken on behalf of The Alzheimer's Society at the Judicial Review into the first medications to alleviate this condition. Sadly, the Judicial Review then stated that these medications could only be prescribed once people had deteriorated, a crazy decision which was rightly overturned four years later. During those four years we paid for private prescriptions while her consultant at the National Hospital for Neurology continued to monitor her under the NHS. Sadly, due to them being prescribed so much later, they were only effective for about 22 months. We looked after my sister at our home for three and a half years until it became too much and she had to go into a care home, which was difficult as she was still under the age of 65. She was there for about 18 months until they said her behaviour was "too challenging" and they could not keep her there. We managed to find another care home where she lived until her death in 2008, thirteen years after her dementia began. I have seen the changes that have slowly taken place since then but dementia is still underfunded and under-researched. This devastating disease affects not just those who suffer from it but also all those who care for them and its impact is huge. It should be a top priority.
Hazel
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I was 14 when my dad was diagnosed and it was so confusing seeing him slowly stop being able to parent me. Although at first I didn’t comprehend what was going to happen to him, by having a diagnosis I was able to understand why he was acting the way he was and that he could not control his behaviour. Dementia is not a natural part of ageing and the impact it has on society and people like me, my dad and my family are truly devastating. I work first hand with diagnosing people with dementia, and I cannot tell you the impact the lack of funding has had on waiting times and jeopardising patient care. I’d like the government to understand this isn’t going away and we need to act now to prioritise dementia diagnosis and dementia care in this country.
Sarah
I was told I had vascular dementia after an MRI scan of my brain, having a stroke about a year before. I was given information about how to cope, which was very useful. I have set up LPA's now and free to drive a car, although license has to be renewed every year.
I attend dementia cafes, so meet new people quite regularly. I take much medication, mainly to avoid getting another stroke.
I attend dementia cafes, so meet new people quite regularly. I take much medication, mainly to avoid getting another stroke.
Peter
![Dementia Action Week supporter](/sites/default/files/styles/user_story_lightbox_mobile/public/media/images/image/2024-05/IMG_0218-portrait.jpg?itok=c0g8rBCz)
My husband was diagnosed with Alzheimer’s in 2012 the specialist was kind and understanding.
But the first few years were not to bad we could still do things together,and we had help.
But my husband was taken into hospital with chest infection and on trying to put him on a standing swivel he broke his humorous bone in his arm.
From this happening he stopped walking and we had to have carers in 4 times a day seven days a week.Our home was adapted for he needs.
It was very stressful going from having myself and 1 carer and our daughter looking after him.
Some carers were very good some were awful, and in one month alone we had 38!carers.
Our social worker was excellent, plus the district nurses.
but i had to fight for a lot of things the proper pads etc . and with the care company over his care.
He was double in continent and we had to liquidise his food and was having seizures.
Every morning he would give me a lovely smile and a kiss and at night. We have a strong faith and I had a lot of love and support from my christian family and a local hospice.
Sadly he Died in 2021 i miss him more each day i was lucky to have him at home and though it was hard I would do it again.
Every case is different my husband was gentle and i have
friends who’s partners were not and they had to go into care.
More should be done in training carers and help in the home and social care.
People should not lose their houses and savings even being at home cost over £800 pounds a week which we contributed to.
I would gladly pay more to social care and the NHS for better training because a lot of professional staff do not understand Alzheimer’s.
But the first few years were not to bad we could still do things together,and we had help.
But my husband was taken into hospital with chest infection and on trying to put him on a standing swivel he broke his humorous bone in his arm.
From this happening he stopped walking and we had to have carers in 4 times a day seven days a week.Our home was adapted for he needs.
It was very stressful going from having myself and 1 carer and our daughter looking after him.
Some carers were very good some were awful, and in one month alone we had 38!carers.
Our social worker was excellent, plus the district nurses.
but i had to fight for a lot of things the proper pads etc . and with the care company over his care.
He was double in continent and we had to liquidise his food and was having seizures.
Every morning he would give me a lovely smile and a kiss and at night. We have a strong faith and I had a lot of love and support from my christian family and a local hospice.
Sadly he Died in 2021 i miss him more each day i was lucky to have him at home and though it was hard I would do it again.
Every case is different my husband was gentle and i have
friends who’s partners were not and they had to go into care.
More should be done in training carers and help in the home and social care.
People should not lose their houses and savings even being at home cost over £800 pounds a week which we contributed to.
I would gladly pay more to social care and the NHS for better training because a lot of professional staff do not understand Alzheimer’s.
Sylvia
![DAW supporter](/sites/default/files/styles/user_story_lightbox_mobile/public/media/images/image/2024-05/IMG_2659-portrait.jpg?itok=BgGcyaA1)
My husband had vascular dementia for which there is no treatment and is a very hard diagnosis. When the dementia took over he would be completely out of it, I had to give him medication, his diabetes injection, wash him, toilet him and every else involved so I became his carer not his wife with no help from any source. The picture shows how we were.
Kathleen
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My parents lived at home together. My Dad had other issues and the dementia was overlooked initially because of this. My mother also had dementia which we were not really concentrating on as Dad was getting worse. He needed morphine regularly for face pains. As a result of Mum not having a diagnosis she was giving him way too much morphine daily as not aware. Though times for family. Once we had diagnosis of dementia for both the help we received was amazing. From social workers, mental health department, consultants, funding. You feel alone and scared as a carer until the diagnosis is given and help can be sought.
Julie
My family and I noticed changes in my wife's usually smart mental capabilities in 2015 and despite having two poor results for memory tests conducted by our GPs it took over a year to get a reference for a brain scan which eventually confirmed Alzheimer's disease and vascular dementia. The diagnosis was the key to getting available treatment and care and she was able to have a meaningful few more years of life until she died in January 2024.
Michael
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Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?