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My lovely clever husband was diagnosed at 65.
We had a house in Spain and private health cover so scans were carried out quickly and medication prescribed.
Took...
My beautiful mum June, beautiful inside and out. The...
My mum was diagnosed with Lewy Body dementia but not before a long period of personality change that we didn’t initially understand and then a very time getting her...
Even if you are able to obtain C.H.C. it is still not enough to pay nursing home fees. If your wife is in a home it is near on impossible to move her because the home...
My wife was diagnosed with Alzheimers around 8 years ago. I first noticed a problem when we were in Madeira, thought that we was in the local area where she lived ...
My mother was referred to the memory clinic and after a few verbal and written tests was diagnosed with vascular dementia. That was it, no support by anyone other than...
Both my parents had dementia but my mum declined more...
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,...
My lovely clever husband was diagnosed at 65.
We had a house in Spain and private health cover so scans were carried out quickly and medication prescribed.
Took reports to GP here who carried on the prescription, memory clinic visit took a year to happen!
He gets higher AA, blue badge, council tax discount.
I have found it very hard finding out what support is available and from where.
Had Carers Needs assessment this week....referred by memory clinic.
Her main aim I felt was to tell me any and all support would need to be self funded....without knowing anything about our finances.
I asked about a Needs assessment for my husband and was told not needed as I meet all his needs.
This feels like a very lonely journey at times.
I know I'm lucky that my husband remains calm, happy and loving but the future is sca8
We had a house in Spain and private health cover so scans were carried out quickly and medication prescribed.
Took reports to GP here who carried on the prescription, memory clinic visit took a year to happen!
He gets higher AA, blue badge, council tax discount.
I have found it very hard finding out what support is available and from where.
Had Carers Needs assessment this week....referred by memory clinic.
Her main aim I felt was to tell me any and all support would need to be self funded....without knowing anything about our finances.
I asked about a Needs assessment for my husband and was told not needed as I meet all his needs.
This feels like a very lonely journey at times.
I know I'm lucky that my husband remains calm, happy and loving but the future is sca8
Lynne
My beautiful mum June, beautiful inside and out. The closest mother daughter relationship where I notice very early on that it was much more than just getting old and forgetful which seemed to be all I kept hearing from others including professionals.
The biggest challenge I faced was the battle with adult services to make my mum safe and as secure and content as she could be. Living independently with Dementia meant fear, confusion, being often lost inside her flat and outside her flat. Losing the ability to do daily tasks and just staring into nothing and wandering around.
Being offered a care home away from me where mum would have likely deteriorated further without me by her side. Whilst mum was forgetting everything and everyone, I know till the day she passed that she still knew me. I eventually won the battle to get mum near to me where she had several months of contentment and security and having the mother daughter closeness still. Whilst it seemed our roles had reversed I know I was still her little girl.
Mum is finally at peace now and I'm relieved that she is no longer suffering and frightened and confused on a daily basis.
Diagnosis early is so crucial to get all the right help.and support for our loved ones living with Dementia.
Xxx
The biggest challenge I faced was the battle with adult services to make my mum safe and as secure and content as she could be. Living independently with Dementia meant fear, confusion, being often lost inside her flat and outside her flat. Losing the ability to do daily tasks and just staring into nothing and wandering around.
Being offered a care home away from me where mum would have likely deteriorated further without me by her side. Whilst mum was forgetting everything and everyone, I know till the day she passed that she still knew me. I eventually won the battle to get mum near to me where she had several months of contentment and security and having the mother daughter closeness still. Whilst it seemed our roles had reversed I know I was still her little girl.
Mum is finally at peace now and I'm relieved that she is no longer suffering and frightened and confused on a daily basis.
Diagnosis early is so crucial to get all the right help.and support for our loved ones living with Dementia.
Xxx
Karen
My mum was diagnosed with Lewy Body dementia but not before a long period of personality change that we didn’t initially understand and then a very time getting her to the GP and an eventual diagnosis with very little help/treatment or understanding offered. Most things I had to research and find out and fight for myself along the way. I managed to keep her in her own home for as long as I could but eventually had to sell her house and place her in a care home just before covid struck which was heartbreaking and I still feel guilt about it even though she has now passed away. The stress, anxiety, exhaustion and guilt is overwhelming when you’re caring for someone with dementia and it’s a continuous period of grieving for a loved one who is still living but a stranger. It’s also very isolating.
I worry about whether I will get it too as my mum did all the “right things” - was fit, healthy, busy, social etc but GPs just brush off any concerns.
Families need more practical help, relevant useful advice and financial assistance at all stages and doctors need a lot more knowledge and understanding.
I worry about whether I will get it too as my mum did all the “right things” - was fit, healthy, busy, social etc but GPs just brush off any concerns.
Families need more practical help, relevant useful advice and financial assistance at all stages and doctors need a lot more knowledge and understanding.
Sarah
Even if you are able to obtain C.H.C. it is still not enough to pay nursing home fees. If your wife is in a home it is near on impossible to move her because the home does not want to lose the income so could lie to an alternative home when they do an assessment. The Social care management still receives good salaries but has not enough funding and do not speak to each other. NO co-ordination.
John
My wife was diagnosed with Alzheimers around 8 years ago. I first noticed a problem when we were in Madeira, thought that we was in the local area where she lived before we were married. When we came home I went to see her doctor and he immediately got her to the memory clinic where she was diagnosed with Alzheimers. From then on we were very much on our own, whith no help until the Alzheimers society stepped in and we got really good advice. I managed to care for her at home until 3 years ago when it got to much for me and I had to get her into a excellent care home where she was cared for until she passed away last year. I miss every day but I can't thank the Alzheimers society for all there understanding and help.
John
My mother was referred to the memory clinic and after a few verbal and written tests was diagnosed with vascular dementia. That was it, no support by anyone other than the family. Sadly she died of pancreatitis and at that time had a memory of approx 2 minutes. We were grateful that she did know who we were before she passed.
Linda
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
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
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?