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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.

We noticed my mum becoming forgetful. My
Mum and me were main carers for my dad who was wheelchair bound and needed constant help. We didn’t think much of it until my dad started losing a dramatic amount of weight a year later and I had by then moved to the Isle of Wight with my job. It was only when I visited them before my sons wedding that my dad took me to one side saying mums moods had changed and she wouldn’t get him any food for days on end or make him a cup of tea. Unfortunately my mum was not the type of person you could ever discuss things like this with. She was brought up to be stoic and tough and buried her head in the sand.
My daughter went to visit them and she already lived on the Isle of Wight, a place we had all holidayed in our younger years and my dad was persuaded to move there with mum so we could keep an eye on them both as adult social care in Essex was hard to get.
Just before Covid we managed to move them over to the Isle of Wight (adult social care tends to be a little better due to an ageing population). During the first few months we had medical challenges with my dad and had had to secretly arrange with my mums GP an assessment to be done because mum was getting worse, mood swings, repeating everything 3 or 4 times in the space of 2 minutes. My dad was becoming unwell and sadly just after mum had been diagnosed with Alzheimer’s/dementia in September dad had to be taken to hospital and kept it. This made mums head spin. She couldn’t fathom what we were saying to her. She thought we were keeping her away from him but due to Covid we weren’t allowed to visit. Dad was declining and not eating and after much begging they allowed me and my daughter to go in and feed him as he was fading away. We took an Alexa Show in with us do we could just drop in on dad and mum could speak to him. It was an awful time for mum who was getting worse. When dad went into a nursing home we thought it best to put mum in there with him for 2 weeks so they could be together ay least as again there was little visitation. Mum caused havoc in there due to her dementia. I was constantly being called by them saying she had packed their bags and was waiting for me to collect them. Sadly dad passed away but at least mum was with him. We then had to move mum in with my daughter as my marionette wasn't suitable as there was lots of stairs. Mum lived a happy life there for nearly 2 years. We had adult services visit and incontinence nurses as mum became worse. Sadly due to a fall mum had to go into hospital and then a nursing home which was supposed to cater for dementia. I had to raise safeguarding concerns when mum fell in their care and this wasn’t checked out. I felt that because she had dementia she didn’t count, but that was my mum and I wasn’t going to let it go that easily. Over the next 2 weeks she declined with a really bad neck that made her immobile. I asked for this to be looked at but was just told no it’s muscular. I decided that mum needed moving back to Essex and I would go with her which was her wishes. I found her a lovely nursing home in Stanford le hope and I would be moving nearby. Unfortunately mum declined in the nursing home on the Isle of Wight and we found her confused, this was a change overnight and once again the home said it did not need looking at and they were not allowed to call an ambulance so I called a paramedic. They again told me it was muscular and blamed her dementia but I knew something had happened due to the fall on day one of being in that home. I arranged for a private ambulance to take mum out of that home and get her moved back to the nursing home in Essex where they assessed her on admitting her and she had bed sores which was from the previous home. Mum ended up being hospitalised again after 2 weeks and after having a CT scan they found a brain haemorrhage which they said had happened recently. The only time she had fallen was in the Isle of Wight nursing home and they denied she had hit her head. Sadly after a week of mum being in hospital the doctor told me there was nothing more they could do for mum. The bed sore was so big you could fit your fist in it and mum now had sepsis due to this. I sat and watched mum over the next 10 days safe away, it was awful and I feel had mum not had dementia she would of still been with us now. I filed a complaint and we are now waiting for an inquest. I hope I can get justice for mum who did t deserve this and should of had better care considering we were paying for that care £1580 per week!

My story is about my beautiful dad. Dad was diagnosed with vascular dementia and Alzheimer’s in September 2019. There had been signs for a number of years that Dads memory was slowly getting worse. At this stage I feel that we did not have enough information or understanding of the prognosis or what support was available to us. Once Dad was assessed we realised how ill he was and the significance of the illness, Dad had done an incredible job of managing the illness using different ways to try and remember people’s names. Once Dad was diagnosed the support and information made available to us by the Juniper clinic in Birmingham was very good. Information on additional benefits, scans, medication and other support in relation to groups for Dad to attend to support his memory. The team were always available to family and any changes in dad’s needs were met with reviews and discussions about how to support dad and the family to manage those changes. In November 2020 during the chaos of COVID Dad became very unwell he was admitted to hospital with pneumonia and sepsis this accelerated dads dementia and after a long spell in hospital it was decided that he would need residential care. We were incredibly fortunate to find a wonderful residential and nursing home Neville Williams which was very close to all the family which meant dad had visitors everyday. We luckily had another 3 years with dad he was placed on the specialist dementia unit and the team of staff supported dad and us as a family through some very difficult times. Thankfully the expertise of the team supported all of us to be prepared for what was in front us keeping dads safety and dignity at the heart of his care. We are so thankful to the wonderful team at Neville Williams and dad sadly passed away with all his family at his side on Sunday 22nd October 2023. Rest in peace dad love you.
Tom Wren 03.01.1937 - 22.10.2023
Photo Dad and my husband Ryan