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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

My husband was diagnosed with frontal lobe dementia at the age of 61., he is now 67. I was aware of Alzhiemas & heard of Vascular Dementia but not this type

It came as a shock to the family but, by the time my husband had got his diagnosis, he was not in a position to comprehend it. This is a regret I live with as we have never been able to discuss the illness

It took me months going back & forth to the Drs with my husband until we managed to see a Dr that had Dementia training, then the ball started rolling, still took another few months to see Specialists, have scans then diagnoses.

During the time of waiting, as a family, we suffered as we had no idea what was wrong with my husband. We felt in limbo, as no one tries to help you untill these a diagnoses, then we became overwhelmed with what help we could get.

I feel early diagnosed is the key along with more knowledge & more trained GP's to spot the signs & quicker referral rimes

Families should not have to suffer a long wait to get a diagnosed

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