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My husband has got steadily worse since just before COVID. He lost his job due to giddy spells and then through that we eventually saw him have antidepressants. He appeared ok with simple memory tests so it was put down to anxiety loosing his job etc He was just 60 but since he has forgotten how to navigate Exeter where he was a good bus driver and he is constantly asking me questions as he forgets things instantly. I can loose him in town he looses our car . He can still drive perfectly well but I have to tell him directions all of the time. I have had to try a research centre to get answers as the GP just changed antidepressants! He has had 3 MRIs and finally someone said he had a stroke a few years ago. He hasn't a clue what month it is .He can't remember when our daughter is away. I am desperate to try and get more information as he isn't right!! It affects the whole family and is getting me down. We almost lost our house as his income was important and he had to give up temping as he kept getting lost and was too slow in his movements. People need more thorough assessments and answers for their families to plan the future. I miss my husband to talk to.

Hi have been involved with Alzheimer's / Dementia coming up to 20 years when I lost my mum with Vascular / Dementia that's when I started doing charity night's and a group volunteer. Still dealing with it has my brother is in a home at this moment of time so hard for his wife & family. It is very honourable in lot's of ways what you have been doing a long time for Alzheimer's / Dementia

Mum coped with Dad’s declining awareness for eight years at home before we finally got a diagnosis. The delay was more down to mum successfully covering up what they were both going through.
Even then she was expected to cope with paid for carers for a few hours a week to give her the tiniest bit of respite, plus whatever I could do in between working full time and caring for my own household.
It wasn’t until I managed to persuade social services to get her a week of respite that the professionals realised fully what she was enduring. In fact the first respite only managed half a day before calling us to take him home. I refused, she probably wouldn’t have done. The second home managed to keep him overnight and then they “couldn’t cope”.
Luckily, and yes luck is a big factor, we found a home that specialised in people with dementia. Dad was there for four years and in that time had several oesophageal stents to keep him able to swallow. However, eventually the medical professionals decided his poor 95 year old body had had enough and he was allowed to pass away peacefully in his sleep.
It took mum several years to regain a life for herself, but now eleven years later, at almost 96, she is still living independently.
She was so worn down living with Dad’s dementia at one time I thought she might go first.

It has taken 3 years for my husband John to be diagnosed with Lewy Body dementia.From a visit to the GP in may 2021 till may of this year.In between there's been numerous appointments neuropsychological and neurophysiological testing MRI and CT scans.Lumbar puncture and a week of lumbar draining from his brain to exclude normal pressure hydrocephalus causing his symptoms.You would think a neurosurgeon would be able to refer him to the memory clinic after the lumbar draining failed to show an improvement,no ,it was back to the GP for her to refer him,so many months wasted when he could have been on rivastigmine to slow the deterioration down.He is the love of my life and it breaks my heart to see him struggle with everyday living xxxxxxJo

I was diagnosed with Alzheimer’s Disease in 2011. I cared for my mum and stepdad at the time and still looked after them for a few more years until they both went into a carehome together. Sadly both are no longer with me.
My nephew, who I brought up as my son from being a young lad became my carer, but sadly he died last year (2023) from lung cancer… I’ve never felt so alone since!

Yes my husband took ages to be diagnosed with Parkinson's.This led to Lewy body dementia Result? Looked after him till the falls etc and being nocturnal were too much
Went into a home and it took all our savings because WE HAD THEM.Most in the home had care provided but thrifty Ray had to pay
It's made me quite bitter at our system
NHS always turned him down as he wasn't ill enough.He died at 6 stone in weight with many other complications such as Stoma bag.
He was never ill enough only to them

My husband has Frontotemporal Dementia (FTD). He started showing symptoms at the age of 48. FTD affects the front and side of the brain (behaviour & speech) as opposed to the back of the brain (memory) in Alzheimer's, so he passed the memory test and was misdiagnosed as being 'hypomanic bipolar'. He has a big personality and a lot of energy but that wasn't the problem. As his symptoms grew worse over the following years the effects on our child and I were devasting. I had to find out what was really wrong with him and after researching all his symptoms I was sure he had FTD. He had every symptom on the FTD page of the NHS website. I went to the GP with him but was told that Mark already had a diagnosis and it wasn't up to me to question it. I asked for a referral for a scan and was refused. The GP had never heard of FTD. I kept phoning him in the following days, weeks and months explaining that my husband was like a different person now, and if he had known him before he would understand the changes in his behaviour were so drastic they had to be neurological. I was getting nowhere and was at the end of my tether. I was trying to keep all the plates spinning, keep a roof over our heads, protect our son and look after my husband. I didn't give up and after about 6 months he finally gave in and referred us. The neurologist was incredible, I cried with relief that someone finally understood. The brain scan clearly showed the atrophy caused by FTD. It should not have been that hard to get help. There were many times I felt like giving up so there must be hundreds of other misdiagnosed people out there. I was 45 and our son had just started secondary school when Mark was correctly diagnosed in 2018, six years after the symptoms began. Our whole lives had been turned upside down but once we had a diagnosis things actually started to get a bit better. I didn't feel like I was on my own anymore and we could explain to people why Mark was behaving so strangely. Mark's symptoms were so different to people's perception of the disease, but people are a lot kinder when you can explain to them that it is dementia, a cruel disease called FTD with no cure yet.

I have a very long painful story but will keep this as briefly as I can. My mum had her memory test without myself or my dad being present, we had popped out and were unaware the memory nurse was attending that day. We got home to a written note that she had been. 3/4 days later we got the letter she would be attending. We then got a letter to say we had follow up appointment. Both my dad and I attended with my mum in her wheelchair as her mobility wasn’t good. We were cramped into a very narrow room and the Dr was as cold as ice. She basically said my mum had what they called mixed dementia and explained Alzheimer’s & vascular, gave us a book and that what was it. We were in the room for approx 5 mins. We all felt numb. Would you give a cancer patient a diagnosis like this I asked myself.. no they would not, so why would you treat dementia any differently as it’s the largest killer in the uk and is terminal just like some cancers can be. My mum was a human being and just like thousands of other people with dementia are treated like they do not matter. They do matter and more support needs to be given from the time of diagnosis. My dad had to go to Alzheimer’s society to get the support he needed for us and got nothing from the healthcare professionals. My mum was a much loved wife, mother, grandmother, sister& an aunty and should never have been defined by her dementia.