Share your story

My wonderful wife Valerie suffered from Frontotemporal dementia and the three words that stand out to me from almost 4 years of 24/7 care are Independence, Identity and dignity. First you lose your independence, then your identity because you may look the same but you are obviously not. Finally sadly you lose your dignity. It is such a cruel disease and sadly patients and carers do not get the support they desperately need. It was a terribly sad way to end Valerie’s life after being together for 64 years from the age of 13.

I wish people & Government to become more aware that Dementia can strike at any age & a lot of younger people are more than likely to have a Dementia that has a fast pace of deterioration.

My husband was diagnosed with Frontal Temporal Behaviour Variant Dementia at the age of 61, still employed at this time. We realised at this point, that he probably had been living with Dementia for a few years before but our ignorance of it & the length of time it took Drs to diagnose him,, after many visits, treating him at first for depression, all took time.
The impact this has had on our family is devastating, the years our family should have had together, hubby getting to know his Grandchildren, doing things as a family, has all been taken away from us, hubby's retirement now being spent in a Care Home with us visiting him and the impact on his life is sole destroying.
Dementia is a wicked disease.
I would like to see more understanding for people of the types of Dementia & that the word 'Dementia' is an umbrella word for ALL types.

Hi, I looked after my dear wife for two and half years before she was moved into a care home where she died 4 years ago. She had picks disease a personality changing dementia. One minute having a cuddle then it would change to you are a scumbag, we are not married get out of this house, you learned to live with it.
I'm actually about half way through writing a book, a day by day life story of about a year of our journey to gether. Ken

A dear friend and neighbour suffered with Vascular Dementia. It was extra painful and challenging as her son had died suddenly and unexpectedly. She lived alone with support from neighbours and a care agency. Thankfully her last few months were spent in a local care home. She was very settled there. She sometimes thought she was on holiday there with her son or sometimes round visiting me. She was a special kind lady and she is very much missed.

My sister in England invited me over from Australia to stay with her in England. She sounded scared and lonely on the phone after becoming a widow. I got to her home and found out two male Power of Attorneys were in place who put in writing that I couldn't live with her. These men are complete strangers to me. I think they are doing the bare minimum of taking her to medical appointments and shopping but she has little socialisation, learning,, love, care, fun and someone to give her the best quality of life. This situation and the way they treated me worsened my complex trauma from an coercive control relationship, made me very ill. Counselling in England advised me to return to Australia to recover. I completed two MOOCS at UTAS, my university in Hobart, Tasmania. Now I'm studying their Diploma in Dementia Care, with a government fee waiver. I have a learning access plan as I find learning, and life, very difficult. I am sad that the support, love and care I wanted and needed to give to my sister means we both suffer a great loss. I don't know what the plans are for decisions about home support, or residential care, or anything. I have never been told when she was in hospital, on several occasions. This situation is not covered in my course because it is a legal issue. But for me this is a care issue, and I'd like the story to be told and hope for a way for families to be told of the diagnosis and treatment plans.

My Dad had Dementia with Lewy bodies and died in 2010, Mum is 95 next month and has Alzheimer’s and Vascular Dementia, both parents showed signs of dementia but as a family you don’t want to accept it and we knew they couldn’t have accepted it either. I think people and the Government need to realise how difficult this is for the person and their families and give us access to the information we require at possibly the worst time of your life and treat dementia as the disease it is and not a nuisance . I like many others have come across so many brick walls when trying to get things done

My mum was diagnosed with Lewy Body Dementia /Parkisonisms in March 2024 . Mum fell and was taken into hospital where she started having scary hallucinations . Mum would ring us in the middle of the night crying for us to help her as people were shooting at her and men were breaking in the windows . It
Was so horrible to see her so scared , nothing anyone said could calm her down . Eventually after lots of phone calls and continually pressing the OTs at the hospital we got mum home after three and a half weeks . We thought this would help calm her down and reassure her that she is safe , sadly this is not the case . Mums mood and perception of whats happening change continually , she sees people in her house , also animals . Some days she doesnt recognise her own home and keeps asking to go home . Mum cries for hours at a time and worst of all , she thinks that my dad , her husband of 62 years is her own father , who was a cruel and abusive man , and due to her confusion wont let my dad near her . This is becoming increasingly difficult as he is her main carer. Luckily they live next to me and my family so I am able to help with her care , which is almost 24 hour . Mum has carers come in and get her washed and dressed in the morning and evening , but dad and I put her to bed as she wont go when the carers come . My sister comes over as much as she can to sit with mum so dad can pop to town for shopping and to have a break . We are lucky that mums good friend comes into see her every day , but some days she doesnt always speak to her . It is a horrible disease and her symptoms change constantly , since diagnosis we have had to do our own research about LBD even though it is the second most common dementia . We suspected mum might have Parkinsons for a few years as her walking has slowly deteriorated over time , her hand writing has become unreadable and she stoops and shuffles , she also has had many falls most resulting in hospital visits . We had to wait 42 weeks to see a neurologist , after diagnosis we were not given any information about the Parkinson's or the Lewy Body , we as a family felt very alone and utterly overwhelmed , no one gave us as much as a leaflet to read . The most help has come from our GP , but nothing has been offered we have had to find everything out by ourselves . The Parkinson nurses are kind but we had to wait 8 weeks for them to contact us and that was only after many phone calls from us and eventually the GP rang them . Unfortunately when the Parkinson's nurse did come she said that she had no knowledge of the Lewy Body dementia . My mum has occasional good times , hours not days , her long term memory is still good and she knows who we all are except for confusing my dad with hers . Mum has always enjoyed
Watching tennis , football , cricket and speed way , now if it is on the tv she pays little or no attention to any of it . She also was an avid crossword and scrabble player , most of us didnt want to play her as she always won at scrabble . Her mental math has always been amazing and now she cannot make sense of even the smallest sums , I have to sort all her bills etc . My dad worries constantly about mum , he is unwell himself he has had bowel cancer and now has bladder cancer , he worries what is going to happen to mum ,, especially if she continues to confuse him with her father and wont let him near her . We are hoping our next visit to the neurologist will prove more enlightening and hope she will prescribe something to help with the hallucinations and delusions , it will be 8 months since she first saw mum ! Sadly there does not seem to be the interest or resources for dementia that there is in other diseases , even though the statistics say1 in 3 of us will get a form of dementia . To sum up , I can only describe the feelings of helplessness and loneliness that this illness spreads , the heartbreak of not being able to comfort mum or offer her some peace , and the constant looking for answers to reassure dad about the future . Lets hope that the government can see the need that is growing in our country for more structured help after dementia diagnosis and take steps to address the vacuum that now exists .