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We didn't see Dementia creeping up on my Mum, it seemed to come into her life in 'dribs & drabs'.
I first noticed that things weren't going well for Mum when I asked what she had had for her lunch & she described her meal totally, but when I checked the fridge, none of the items she had mentioned were around & her freezer hadn't been used for so long it was frozen shut with ice. This was back in the late 90s, when Dementia was not spoken about, it wasn't even really recognised.
With a young family, myself & my Mum battled on & it wasn't until I was on my knees not knowing what to do that help was provided by the Manchester Social Services. My question was 'Who helps the Carer?' & unfortunately, although 25 years forward, I feel that this is still very much the case. That conversation with someone who understood, helped me & my Mum no end.
My Mum & our family lived with her Dementia for 25 years +. We were the lucky ones, we made it work for us all. Her needs always came first & this caused a number of strains on my family, ending in divorce.
I feel that not much has really changed, I happened to change career & started to work for a Housing Company where my Role included supporting clients in Sheltered Accommodation who had Dementia & we were given intense training so we absolutely knew how to spot the signs & also to treat & support people with this dreadful illness. This training helped me so much with my own Mum, it was invaluable. But where do others who are not as lucky as me & can't navigate the internet get help & support?
My Mum's illness was diagnosed as Vascular Dementia & we had regular Check-ups at the GPs & sometimes with Consultants. I was very lucky & although my Mum had this disease, she just had 'blips' & anxiety from time to time which we were able to work through together. She always knew who we were & never lost her cheeky sense of humour!
With the help of a wonderful Care Service, Cleaner & Scheme Manager she was able to live at her Older People's Sheltered Scheme in a 1 bed flat for a number of years. Until she was 93 years old in fact, when her Dementia progressed from Vascular Dementia to Lewy Bodies & this meant that she had bouts of delusions & hallucinations which meant she was no longer safe on her own.
She moved into Residential Care & was there until she needed to go to hospital one early morning & unfortunately her illness had progressed to such a stage that her swallowing reflex was very difficult & some food had entered her lung. There was no way back from this & she passed away very peacefully with me by her side the next morning. She was at peace & died as she lived, in a quiet, happy place - with me, telling her that everything would be ok. We miss & think about her every day & always will.

My wife first started showing the signs of dementia in 2009 but finally went to see her doctor in 2011 and after tests and interviews including myself she was diagnosed with early stages Alzheimer's. Deterioration was slow and in 2013 she had a fall in the garden and broke her femur, which meant over an hours operation with metal pin inserted. In 2015 she suffered two minor strokes after which her mobility, eyesight and hearing were badly affected , and in 2017 after a number of assessments by local mental health team she was placed in local care home. By that time she also had no idea who I was. The home was a specialist in dementia care and I cannot fault the love ,respect and attention she received until her death in April this year at the age of 87--we had been married 64 years. Although the home was about 4 miles away I visited several thousand times to visit and sit with her, although of course she had no idea who I was. I had to travel by car as it was only option and during the fifteen years till now I was not able to take a holiday ---in fact even if I could have afforded it I would have felt guilty, but I do now feel I have missed fifteen years of normal life which I am sure many others will have felt the same, so dementia is an evil disease which so drastically affects the lives of their loved ones, and carers like myself will know only too well that little or no financial help is available from government or other sources.

My mother’s memory problems started to show in 2019 when she was 83 and her GP referred her to the memory clinic. Lockdown the following year accelerated her memory loss and delayed her diagnosis. As I lived 60 miles away (and my brother at the other end of the country) we had unqualified carers going daily to help her with more and more aspects of daily life: meals and personal care, shopping, supervising medication and providing some company.
Things came to a head when one carer was taking a holiday, at the same time as me, and the other couldn’t provide the level of support my mother needed. We moved her to a home, near my bother as it was cheaper, and I got on with clearing out her home in order to sell it. It was painful having to dispose of a lifetime of her possessions before she was actually dead.
The house has now been sold which secures her care home for at least five years, but the last time I visited her, she asked me when she was going home…

My beautiful Grandfather Don was always the life and soul of the party. My Grandparents moved from London to be near my parents in Gloucestershire. About a year later they noticed my Grandfather hiding post and often sitting there in conversation going blank and silent. A few minutes later he would come back and say “I have had one of those funny moments haven’t I”? 2 years later he was diagnosed with Vascular Dementia. No one really understood his diagnosis at the time. Gradually his memory declined and he would try and get outside the house and wander. Very little support, advice and guidance was given to the family in terms of how to manage this. My Parent’s eventually moved my Grandparent’s into their small home to care for my Grandfather on a daily basis. Until you witness this incredibly cruel disease yourself you have no idea the challenges that this brings. The constant monitoring, care and reassurance and the decline of someone who was so animated slowly deteriorating in front of you. The constant fright that when you enter their bedroom that night to give medication that they don’t know who you are! The constant battle that you face every day to give them the quality of life and care they deserve on your own. You feel you are at breaking points at times and this has to change.

Our amazing dad grandad passed away with vascular dementia the Xmas before covid hit. Mum god bless her looked after him till her health was being affected
. They had been together for 65years. He enjoyed the party but didn't know why. He was diagnosed 4 years earlier but we think he had it long before . He was 87 when he passed peacfully in his home . My mum never got over it .luckily he was in thus home for respite for mum so they new my gentle dad. In the September he was admitted to the hospital I'll not name as he had a urine infection. He had no idea where he was he was scared.There was no specialist dementia nurses. One evening apparently a nurse tried to turn him in the middle of the night calling him by his first name. He didn't recognise that name was never called by that name . So scared he lashed out and caught a nurse. He was then labelled violent. The nurse was so upset but protocol meant he was labelled violent and a man of 87 was put on behavior report. That meant the home mum and organised close to their home woukd not take him. It was them who told us of the incident not those in charge of his care.
No other home would touch him dad was the most gentlest man. Even the physiotherapist he had to see said he wasn't a danger to anyone. It was circumstances . Late at night no idea were he was people shouting a name he didn't know he was scared.
Thankfully the respite home who knew him would take him. That was September he was happy but had know idea who the family was and mum . It broke her heart . It broke the grandchildren their beloved grandad was just a body. A blessing he passed away 23rd December.4 years . The death certificate said dementia cause if death. He always said he didn't
want to be in a home.
I wish people really understood. Uou see your loved ones disappear. Their body Is there but the have no idea who you are. Dad woukd look at as us with scared eyes that haunts me forever. My amazing kind gentle dad.
Please help others its too late for us .To the government invest in research this disease that kills more people in UK and to reverse NICE decision and allow this new drug on NHS