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Mum passed away 2 years ago from vascular dementia the disease and the experience of caring for mum and watching the disease take her bit by bit still resonates and has had a lasting impact on me and my family. The early stages, the bit everyone sees , a bit muddled , forgetting conversations, forgetting where things are, I think this is what the world thinks dementia is ! But it is so much more. The bit people don’t see the bit that goes on behind closed doors is the really devastating part and it’s this part people need to know about. The final stages of unable to walk, talk, wash , dress, feed yourself, incontinence, the total loss of who the person is. This is the bit only those of us who have cared for someone see and fully understand the devastation it causes. I’m still living with dementia although mum is at peace now, a peace you pray for. Thats a hard one to admit but I did I prayed she would be released from lying in that bed day after day not being able to communicate with eyes that were confused and empty. I don’t regret a single moment of caring for mum and I wish with all my heart we could have managed her care in her own home until the end but we had , for her sake and ours, find a nursing home for her and the guilt I feel at having to do this lives with me still everyday. If I could change one thing it would be this , to have had the financial ability and the regulated accessible care to have kept mum at home. The advice I would give to anyone caring with someone with dementia is plan ahead you don’t want to think about it but when you need the help at the end stage , which can go on for years , as in our case , you can put those plans in place because quite often it can be a crisis situation and you just have to act and put care in place that you might not necessarily want . We were lucky we had the most amazing people caring for our mum and they became an extension of our family but I still wish we could have kept her at home. I wish the government would see the importance of keeping people with dementia within there own homes and help families financially who are willing to keep caring for their loved ones in this situation . Regulated , affordable day and night care that is accessible would be a life saver for many families. I hope that doctors will also have the funding to help diagnose people early too and have the information and training to spot these early stages and listen to families as they are normally the first ones to spot them and know something is wrong. It’s important that people can access treatments and families can access help at an early stage. As a family we grew closer together by caring for our mum and I know she would have been so proud of us all but I wish with all my heart that we could have spared her from the suffering she must have felt. Research is the real answer it’s the only thing that’s going to stop the devastation this disease causes. It really is the longest goodbye 💔

We lost our beautiful mum who had frontal temporal dementia and cancer. The dementia was so so quick. We saw the signs late 2021 early 2022. We lost our mum NYE 2022. It was rapid. Someone who loved being active and writing poems, soon faded away into the background. Its impacted our family massively. It’s our mum. Within ten years two family members have passed away with this illness and a further two more have developed it. Truly heartbreaking. Something needs to be done 💔

My mom was diagnosed with Alzheimer’s in January 2018, on her 76th birthday. The family had suspected something wrong the previous 2 years but put it down to old age( just forgetfulness) and living alone after my dad passed away in 2009. She gradually got more and more forgetful. We were lucky with a quick diagnosis and for the first 6 weeks wonderful support with POA and attendance allowance. After that we were on our own. Attended dementia cafe but mom was not interested. Over 2 years she had numerous falls and got really confused. We had discussed a care home but mom would not contemplate it saying she did not want to go, getting very aggressive. In October 2020 she had a bad fall and was hospitalised. Unable to care for herself we put her in a care home on a temporary measure and she has been in a care home since then. The first home became unsuitable for her and told us, as she is self funding ( we had to sell the family home to pay for care) that we had to look for a new home. No help was given, we had to sort it all out ourselves. She has been in her new care home for 21 months. They are brilliant but to see mom is deteriorating is heart breaking. She no longer knows me and gets very aggressive. Mom has no quality of life and due to her severe mood swings I am unable to take her out. Over time she has lost all interest in life. Physically she is great for her age but the Alzheimer’s has robbed me of my mom. I wish people knew how heartbreaking it is on the family and how utterly debilitating it is for the person suffering. Government need to be aware of the cruelty of the disease and do something to help fund more care. My mom and dad worked hard for their house only for it to be taken away to fund her care something my mom never wanted and to this day I feel guilty that I had to sell it. I know my mom is in her body but her spirit has gone and each time I visit it’s like I lose her over and over again. Most of her time she lives in the very distant past, thinking she is with her mom and dad, basically she has reverted to being a child

My Husband has mixed dementia, diagnosed in March 2021, although he was showing symptoms a couple of years before this. He was a bus driver for almost 40years, he was one of the most kindest gentleman you could ever meet, we have been married for 54 years, have 3 children and 4 grandchildren who think the world of him. I looked after him at home for as long as I could, he became unmanageable due to continuously falling and being awake all night, he is 5.9 in height and was quite a thick set sturdy chap although now he has lost so much weight as he no longer eats the same. He is in a care home unable to walk properly and no longer is able to speak, just the odd “yes” or “no” he has no quality of life whatsoever Alzheimer’s/vascular dementia has had a massive impact on me, to watch my husband suffer in this way is devastating, not just for me but the whole family, I’m with him everyday as I can’t leave him, I love him so much, I can’t begin to say how guilty I feel him being there, we built a life together, worked all our lives, now we should be enjoying our lives together only for it to be snatched away to such a cruel disease. This disease should be a top priority for the government to put more into research and treatment and why this has become the number one illness of our time. Unless people have been through this they will never know how it devastates a whole family like ours, children, grandchildren, daughters-in-law’s as well as his own family his sisters & brothers it effects everyone. Im watching him slowly disappear from my life, it’s like he’s there, but he’s not if that makes sense.
My heart is broken
Janice (his wife)

My maternal gran had Alzheimers, and mum had vascular dementia. Both had awful deaths and I miss them terribly.

Mum cared for my dad who was in a wheelchair. As they did not have family close by, we believe she hid her earlier dementia symptoms to protect them both. When dad told me, it took some time to get a diagnosis which we got in May 2010.

In June 2010, mum became distressed when my dad went into hospital. I spoke to her GP who said she was fine being home alone as the disease was "still in the early stages"..... when I called her that evening, her behaviour was very worrying. I drove over to her house and she became psychotic, having no idea who I was and being physically violent towards me. My lovely mum was sectioned the next morning. This was now less then 4 weeks from us getting a diagnosis. The GP whom I had raised my concerns with came with the team who sectioned mum, and was embarrassed at his decision. I could have hit him as the police arrived to assist if necessary. Curtains twitched, and neighbours and passers by witnessed my mum's humiliation. Thank goodness she did not understand what was happening. I was totally distraught. This could all have been prevented if we had been listened to.
Mum did not know any of us from that day forward.

Mum never went home again which was terrible for my disabled dad too. She spent 6 months in an organic assessment unit out of area as there were no local beds. Dad could not see her at all. She was then admitted to a nursing home where she remained for the last 8 years of her life. My dad moved into an assisted living flat close to the home and visited mum every day which was so loving, but very distressing for him too. I really had to battle with the OATS (Out of Area) team to find a suitable home for mum with accommodation close by for dad too which was incredibly important to us all. One member of OATS staff said "she (mum) won't know where she is so does it matter where she lives?" Unfortunately, this attitude was not uncommon, and made a difficult time even worse for our family.

With dementia, there is no time limit. Families of newly admitted residents over the years who ask "how long will this last...." but there is no answer. You love them so much, you want it to be quick. It's horrible.

When end of life finally came, and fluids, food and medication were stopped, mum took 16 days to die. It was truly barbaric. She was literally decomposing in front of us. Even now, 6 years later, the last memories of our beautiful, funny, kind, happy mum, are overtaken by her brutal death. It is so cruel. I miss her terribly.

I work for the NHS and thought I knew my way around systems. I asked questions about mum along her journey, and challenged where necessary. I questioned quality of care, raised concerns about the high turnover of staff in mum's home, and the low wages good Carer's receive for extremely difficult working conditions. The whole system is on its' knees.

I wish someone had sat down with is in the earlier days and talked about the reality of having a loved one with dementia but nobody did. We were left to find our own way around a complicated system. The GP was awful (and I work with hundreds of medical staff in my work role so I do know a good doctor or not). I hope after our situation, he reflected on his lack of support and compassion and how, perhaps, my mum's section may have been avoided, and our family torn apart so cruelly. Dad passed away 2 years after mum. He never got over their awful dementia journey.

RIP Barbara, my lovely mum. Always beautiful to me xx

My mother’s was diagnosed with dementia in 2018, I only found that out after she had passed away. My mum had her own flat and I would go after work and day off to help her. I paid for a private carer at first until I felt the dementia was getting out of hand. I then got carers twice a day, and as she got worse I could not cope, no one helped me, social services were not helpful. I had to put my mum into care (feb 2021) her flat was sold to pay for the care home, she died dec 2022 aged 75 years old

My Husband was diagnosed with Alzheimer’s dementia in 2021. We noticed he was becoming forgetful and lost confidence in his day to day activities around 2018.
Slowly he became worst, until it became unsafe for him to remain home. In March of this year he became bed bound , unable to swallow or speak he was put on palliative care. He died on August 28th. Watching the person you love decline and slowly forget you is heartbreaking. We were lucky as the care home Ted was in were wonderful to both of us. When he went into care he was a 12 st man he died weighing just over 7st. No one tells you that the road family has to tread is so traumatic. That your loved one becomes violent .
When the time comes that they can no longer live in their own home, and family make the decision that more help is needed. To be told that there is a safety issue for him to remain with us. It is rollercoaster of emotions ,guilt, devastation, the fact the man I lived with for 54yrs I have to let go. There was never any sort of real help from the mental heath team, or NHS . If a cancer, heart, or stoke patients can get treatment with the NHS. So why oh why are dementia patients and their family not treated the same way. The financial strain is one worry that family don’t need on have.

I came back from living in Dubai to help sort out a care package but ended up spending the next two years at home caring for her. We'd known something was wrong for a while but after local builders broke into the house thinking she had died, but was in a catatonic state, that we knew something was badly wrong. My sister managed to get her out to Dubai but she was so unhappy away from her familiar surroundings I brought her home and ended up staying in the house as her carer. Mum was living off cake and toast so I was able to make her tasty healthy meals and that cheered her up. We talked a lot, walked to the shops and local cafe where she enjoyed more real coffee and just being outside the house. I had to start to just accept her world and how she saw it, no point arguing or questioning stuff just roll with it, she is enjoying the company. I started taking pictures of her, portraits as it's my job and she loved the attention, always a bit of ashow off like me this helped me understand more about her condition and accept what was happening. I was looking for her character and wanted to show the decline with dignity so I kept on shooting hundreds of pictures but just 1 every day or so. Eventually the social workers told me she needed 24 hour care and the local church helped find mum a place as she was such a big part of the parish and it's life. I continued to take portraits for the next 7 years and even through COVID I shot through the windows when I could and started to shoot her helpers too. The only time I stopped was at the end in hospital when she faded fast after 2 bouts of COVID and she finally slipped away. I fell in love with mum all over again, the time we spent laughing and playing music, singing, we had not always been so close, I traveled so much and she never understood why I could not settle. She did not care now, just happy for the attention and somebody to hold her hand even though she did not know it was me for the last 7 years.

My partner John, a sufferer with late stage Lewy Body Dementia. He is looked after at home with the help of carers. We suffered together since 2016. Life was hard and he was in denial. Loss of control of his life he hated. During that time we managed even moved house, until dementia progressed, i had to watch him 24/7, wandering off a lot and then he became aggressive towards me 2020. This led to him taken into MHealth hospital care and then into a dreadful Care Home. Covid meant visiting became impossible. When we did get in to see him, it was shocking. Social Services Safeguarding got involved. I was allowed to bring him home, after 3 months of enquiries, and provided with everything we/he needed. He has improved so much. The physical disabilities occurred in the care home he has been immobile since. I have before and after photos. Everyone should have the paid for care that John gets. Care homes make people with dementia worse. I have used them for respite and the change in him is significant even for a short stay. We are so lucky to have the services to keep him home. Unlucky to be going through dementia journey but this stage is more manageable now..

My mum passed away with Dementia in 2019 aged 94 from the point of diagnosis it took 7 yrs for the disease to take her life ending up being bedridden in the final year of her life, she broke both hips which is why after the second hip got broken she became bedridden, mum did live at home with my dad prior to going into care, but life got very tough even with the help of family members, mum didn’t recognise me in the last few years which was hard to deal with, mums care at first was costing £36000.00 in the 1st year of 2012. Mum was never offered any form of medication/treatment for her Dementia. Nobody deserves this killer disease RIP Mum xxx

My grandad was diagnosed with dementia 5 years ago.
He moved back to the UK from Spain with his wife Vicki. He has progressively gotten worst, more so over the past year.
Wondering in the evenings, missing, police bringing him home, breaking out of his own home and calling at old addresses. Vicki has been his rock, caring for him the whole time but is finding it increasingly hard and can’t access proper care for him.
Everyone is trying to help but we are not professionals and I feel he needs to be with other dementia patients.
In the summer he had his 80th birthday party he was the last man standing, dancing the night away!
Our family know what lays ahead and we would like to support Vicki, my mum and my uncle in the big decisions that need to be made for him, to keep him safe.
He has always been such a fun loving youthful man and now we are seeing the dementia taking its hold and it is heartbreaking to see.
We hope we can make his remaining time a comfortable time.
The picture below is at his birthday party with myself and 2 of my children who think their great- grandad is wonderful! 🥰