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My lovely wife Sue was diagnosed with Vascular Dementia in the Summer of 2022, ( when she was 73 years old ) I felt there was something not quite right after she had a few falls and was having disturbed sleep at night time. Within a few days we had an informal visit with our very helpful G.P., who said that there was something amiss and referred Sue to the local Memory Clinic within a matter of weeks ( there was some delay due to the build up relating to the Covid Epidemic ). Sue and I were both interviewed by to very sympathetic specialists, and after several assessment tests, they gave us Sue’s diagnosis of Vascular Dementia. We were able to arrangement for Power of Attorney for Sue with our Solicitor quite quickly, but only just in time, as Sue had to sign in front of two legally qualified people and her comprehension of events was already wavering.
On Christmas Eve 2022, Sue had a bad fall out of bed, which required a hospital visit by ambulance…Sue ended up staying in hospital for 7 and a half weeks!!
When she eventually came home, Sue was completely immobile, doubly incontinent, could not really hold a conversation and had little interest in anything.
I had to empty our sitting room completely to make way for a hospital bed, hoist and specialised wheelchair.
Sue has three visits a day from a team of wonderful care workers to help her wash and dress ( I could not manage without them ), apart from them I am Sue’s full-time care ( 24/7 ), my day starts at 5.30 in the morning until Sue’s bedtime in the evening ( 7 days a week ). I do not resent caring for my Sue, I would do anything for her.
Initially we had to pay for Sue’s Care package ( over £1,000 per week ). During the course of a year this took all of our savings, we had built this up for a comfortable retirement. We now have financial support from our Local Council, and Sue receives a Government grant, without this financial assistance I would be deeply concerned about how we would manage.
Sue rarely speaks, and spends everyday in her wheelchair watching TV, on fine days I take her out in her wheelchair for a walk.
I think some of the time Sue knows who I am, but I miss My Sue more than words can say.
This is the cruelest condition that exists, but we can only cope as best as we can…help is out there, and I don’t see what else I can expect from others.
Early diagnosis ( which Sue had ) doesn’t make much difference at the moment, as there is no Medical cure or treatment, and it certainly doesn’t prepare you for what to expect.
I have met other “ sufferers “ with Dementia, but all were mobile and most were quite articulate and responsive, I feel my Sue ( and myself ) got a bad deal ( through nobody’s fault, just what Fate dealt us ).
Take care, but be prepared.

I currently write this now mom has progressed another stage, outhpedic bed is being bought in and a Mo lift - mom is now unable to walk or stand unaided Mom like others totally in denial she has mixed Alzheimers & vascular dementia, she went from driving her pride and Joy powder blue bettle to me having to take her licence off her & take her keys ,she maintains she hit her head on a tree & that's why she is poorly, I have been her care giver for 3 & 1/2 she had been married for 52 year to dad, after losing my dad to glioblastoma brain tumour terminal cancer in the pandemic 30th Jan 2021 moms loving husband,heart broken I began caring for mom finally got her diagnosed in Oct 2022 by the memory clinic brain scan & GP none of that process was easy.
Moms short term memory is bad incontinence, gone from shuffling using a walker frame to can not sit up, srabd or walk 1 foot infront of other no form of co-ordination -loneliness that care givers feel/ our lives become 2nd to our loved one,it does put strains on our marriages & social life.
A hard part is the parent does not like the role reversal that the daughter tells the parent what to do.
Its PRIDE & not wanting to admit her diagnosis that kerps mom in denial.The progression moves quickly then plateaus.Love her she loves me but the struggles of caring are real & can be fractious at times .
Would not wish this disease on anyone I feel for all 990,000 loved ones in the UK & all the family care givers - we need a CURE we all also should get Continous Health Care given to our loved ones.

My mum was suffering with her memory in 2022 then she had a massive stroke in December 2023, since this there has been a massive decline, I just want my mum back.
She cries all the time wants to go back to her mum and dad who have already passed away as well.

I looked after my father for 6 years. I lost my career, my income and my life to do this. The demands placed are unimaginable to anyone who does not live this day in and day out. Trying to find help was a constant battle which was wearing especially on top of the everyday demands caring for someone brings.
The relationship with my sister was strained to breaking point, as I struggled under the pressures that I was under.
People were quick to offer ''advice'' with no clear understanding of what I was going through.
Dealing with Doctors and Hospital appointments etc is a lottery, some professionals treated me with respect others just brushed me aside and didn't want me there. I was my fathers voice, but I was rarely consulted or kept in the loop, especially after he entered a home, even for respite.
I wish Carers were recognised as workers and given respect. I should not have had to use savings to survive or worry about paying bills because the Carers allowance is pitiful. I looked after my father 24 hours a day and no doubt saved thousands from the government coffers, but the emotional toll, money worries and endless strain has left a mark on me that will last for many years to come. I was important too, but I became an invisible victim of Dementia as did my family. Dementia has long thin fingers that reach out silently and invisibly into ever aspect of the patients life and also that of the people who care so much for them. It eats away at every aspect of life - money, relationships, socialising, family, friends, mental health, health and well being, self-esteem, hobbies, shopping, pets, hopes and dreams, holidays, day trips, personal time, relationships, etc etc etc. and the biggest thing is the Guilt I carry that I was not strong enough to take all this on and had to put my father into a home where he died after only 4 months.

Kiaora! That’s Māori (NZ) for Hello and Welcome. My father has Alzheimer’s six years into his diagnosis. He lives in Southern England and I (his son) lives permanently in New Zealand. The long distance relationship we have is hard but this year 2024 I left my job and partner (albeit temporarily) to be with my dad in the UK. for 7 months. Dad - wow he’s a force of nature, old school, would do anything for anyone and now can barely remember if he has eaten. I am happy to be his support his duty of care. I’ve found that being his carer denies me of being his son. My mother his wife is doing her best and they continue to live in their own home together. Alzheimer’s is cruel as we all know. My dad was a marine engineer! A diver! On retirement he got bored and set up a retirement non for profit Irish dancing club for seniors . It ran till his diagnoses. It’s tough it’s day by day it’s exhausting and also amazing. Hats off to all who work in the dementia field. .

My father had Alzheimer's and my mother had dementia. They did it tag team. They lived 150 miles away from me so I used to drive down to their house every week to have lunch. I did this every Wednesday for 8 years. I ran their finances and their house and liaised with carers and their care team. Dad died in 2019 and Mum in 2023. Mum was contented but poor Dad wasn't. He fought it tooth and nail to the last. I spent all their money on their care, care they were promised would be available, for free, all their lives, until it was too late for them to do anything about it. It was really hard for all of us, my brother too. Other people were lovely but watching your parents depart from you, a tiny piece at a time, day-by-day, is really hard, especially with all the money worries of trying to pay for their care on top. I think the authorities realised that people with dementia and their families are taking all their resources to stay above water and don't have the capacity to fight for their rights. The NHS charter is still free healthcare at the point of need but if you have dementia you have to take them to the high court to get it. A friend did, and won, but it took about 15 years. When people have dementia it's not just them who disappear, it's their families too. I feel like I've lived the last 10 years of my life in twilight.

My mom was the centre of our family. She was bright and funny feisty and strong. The best way I can describe dementia is the long goodbye. A bit like a roller coaster too. When it goes down it never comes back to the same level. It's a constant sadness in your hesrt

Hello. My lovely husband Ray has dementia. Not Alzheimer’s but vascular but felt I had to say what I felt. Diagnosed in March this year. Also has had four strokes and was in hospital for 3 1/2 months until we could get him into a lovely nursing home. Did not realise how hard that was to do either. It hit us hard how quickly it has happened. We need the government and social care to up their game with dementia sufferers and their families to give us more support . Did not know until that wonderful documentary on C4 just how big a killer dementia is. My husband gets confused does not say the right words. Needs 1-1 24/7 care and cannot believe how devastating all this has been to see how the man he once was and now suffering with dementia. I have struggled over the past few months. Had so much to sort out like a COP with solicitors. Applying for CHC. So it’s all been very hard. Need action to be taken now by the Government.
Thank you for letting me tell my story.

This is almost too painful to do, having explained to numerous people overvtge years, my wifes decline due to mixed dementia. After noticing some "unusual" behaviour, initially put down to another medical issue which was resolved by surgery, she agreed to visit the doctor who made the referral, whereupon after tests, a diagnosis was given. She was 68 at the time, which is now over 6 years ago. It was hard to adjust at first, but we did ok. However, the onset of Covid and the deterioration she showed during that period made caring for her, on my own, a very difficult task, especially when communication became difficult. So two years ago she went into care, what a dreadful day that was. She moved to a second home as her mobility declined and there she remains, totally immobile, unable to feed herself and not able to effectively communicate. I visit her almost daily (I can't not) and I cry as I leave every time. As time passes it gets harder, not easier as it is truly awful to think of her, a once bright engaging teacher, simply waiting for the inevitable without knowing or understandin her surrounding. I am an empty shell.