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My husband Cyril was finally diagnosed with Vascular Dementia in 2018, after he had been struggling with memory problems for some years. I am 81 and his sole carer. He...
it is so sad to to see my 75 old neighbour getting this terrible disease, but at least he has a good care team, coming to his home and a good social work, and i make...
My mum lost her battle to Alzheimer’s in 2019 when...
My wife was diagnosed with Dementia earlier this year. And, whilst all the professionals had done their tests and examinations, I still firmly believe that the cause...
I was 65 years old when I was diagnosed with early...
My husband was diagnosed in 2015 with the condition...
My husband was diagnosed with dementia in the summer...
Dad was diagnosed with Alzheimer’s in February 2020...
This is my nan, Peggy, celebrating her 85th birthday...
My Grandad, Arthur, died with Alzheimer's in 2021. I...
I knew something was wrong.i begged doctor to test...
I have lost my Dad for a very final time.
The first...
My husband Cyril was finally diagnosed with Vascular Dementia in 2018, after he had been struggling with memory problems for some years. I am 81 and his sole carer. He is 91. He has now reached the stage when he relies on me for 90% of daily living requirements. I wake him. he will go to the bathroom but does not remember how to put the plug into the washbasin. He leaves the water running constantly. I lay out his clothes in the right order to put on. I bath him once a week. He sometimes refuses. I have to stay with him and help with washing, drying etc. He does not know where anything is kept in the house. He cannot make a cup of tea or a sandwich. He cannot go out without me as he gets lost. and when we come home he will look at his shoes and ask if we have been out He can stand for ages at the window looking out. He gets very depressed. He likes talking about his youth but it's all mixed up. He remembers his children and grandchildren but sometimes forgets their names. 193 I try my best to keep his mind occupied. He likes bus rides. We go every afternoon for some hours. He has a digital photo frame with many photo's on it, as well as many photo albums. He still likes music and we sometimes shuffle together to a nice tune. My husband of 60 years.
Johanna
it is so sad to to see my 75 old neighbour getting this terrible disease, but at least he has a good care team, coming to his home and a good social work, and i make sure i visit him every day to make us a tea, what people don't want is self isolation with this disease, He stands looking out of his flat windows for his care team 4 time's a day,and at 4.30pm when i visit him, the care team try and keep the same time's, most day's that help's, and i go to visit him at the same time every day,
My mum lost her battle to Alzheimer’s in 2019 when my son was 12 weeks old. Throughout my pregnancy, every week when I visited my mum it was like telling her for the first time I was pregnant even with a big bump. Seeing the joy on her face was priceless and the conversation that ensued after.
In that time I also experienced my Mum not recognising who I was, which was absolutely heartbreaking.
Alzheimer’s is such a cruel disease to experience seeing your loved once disappear even though they are still, on the outside, the person you know & love.
To anyone who is experiencing a loved one or friend with Alzheimer’s I’m sending you love and care as I know it’s blooming hard 💙
In that time I also experienced my Mum not recognising who I was, which was absolutely heartbreaking.
Alzheimer’s is such a cruel disease to experience seeing your loved once disappear even though they are still, on the outside, the person you know & love.
To anyone who is experiencing a loved one or friend with Alzheimer’s I’m sending you love and care as I know it’s blooming hard 💙
My wife was diagnosed with Dementia earlier this year. And, whilst all the professionals had done their tests and examinations, I still firmly believe that the cause of this dreadful condition began when she had an operation to treat an hernia and in the course of this procedure she was subjected to the worst possible senario when the surgeon told me that she would have difficulty getting her breath as he had compromised her diaphragm.
Since then she has experienced this lack of breath not realising that this would lead to a buildup of CO2 in her system that eventually led to hospitalisation on three occasions.
At each occasion I was given the’end of life speech’ and told not to expect her survival.
But she was a fighter and pulled through only to be left with a life of sleeping with a ventilator and the loss of a part of her brain that deals with memory.
Hence today she is diagnosed with Dementia and I spend most of my time looking after her needs.
I still wonder today if she hadn’t had the hernia operation would she be the same person I married more than fifty years ago.
Since then she has experienced this lack of breath not realising that this would lead to a buildup of CO2 in her system that eventually led to hospitalisation on three occasions.
At each occasion I was given the’end of life speech’ and told not to expect her survival.
But she was a fighter and pulled through only to be left with a life of sleeping with a ventilator and the loss of a part of her brain that deals with memory.
Hence today she is diagnosed with Dementia and I spend most of my time looking after her needs.
I still wonder today if she hadn’t had the hernia operation would she be the same person I married more than fifty years ago.
I was 65 years old when I was diagnosed with early onset Alzheimer’s.
Despite living an active life being an operational firefighter & loving sport I was not in the best of health but this latest news was a real shock to the system despite knowing something was affecting my memory & causing me to lose my balance & regularly dropping items.
I am lucky to have a supportive wife & family but despite accepting the news it is hard to accept.
I try to set things in place & use technology like word documents to assist my failing memory & also keep mentally active.
I regularly take part in a program run by Derbyshire Healthcare NHS Foundation Trust as an ‘Expert Patient with Dementia’ where we openly discuss how my diagnosis affects my life & daily living in order to assist in the Drs development to hopefully help others in the future and have also participated in many surveys highlighted by the Alzheimer’s Society.
I have not tried to hide my diagnosis from others & think this is advantageous as they are very supportive.
I try to live life to the full ..
Despite living an active life being an operational firefighter & loving sport I was not in the best of health but this latest news was a real shock to the system despite knowing something was affecting my memory & causing me to lose my balance & regularly dropping items.
I am lucky to have a supportive wife & family but despite accepting the news it is hard to accept.
I try to set things in place & use technology like word documents to assist my failing memory & also keep mentally active.
I regularly take part in a program run by Derbyshire Healthcare NHS Foundation Trust as an ‘Expert Patient with Dementia’ where we openly discuss how my diagnosis affects my life & daily living in order to assist in the Drs development to hopefully help others in the future and have also participated in many surveys highlighted by the Alzheimer’s Society.
I have not tried to hide my diagnosis from others & think this is advantageous as they are very supportive.
I try to live life to the full ..
My husband was diagnosed in 2015 with the condition ,he passed away in 2020. I worked full time and cared for him alongside my job. I had to work, there was no support financially for me to stay at home with him. Moving the retirement age meant I had to carry on working.
Initially he coped well, as time moved on and his dementia progressed I had to help him get washed, dressed, I came home every dinnertime. We were due for carers to come in to help when COVID hit and I was at home with him until he passed away in August 2920.
I wish the Government would ensure that more funding was given to supporting families living with dementia.
Initially he coped well, as time moved on and his dementia progressed I had to help him get washed, dressed, I came home every dinnertime. We were due for carers to come in to help when COVID hit and I was at home with him until he passed away in August 2920.
I wish the Government would ensure that more funding was given to supporting families living with dementia.
Cath
My husband was diagnosed with dementia in the summer of 2021. We moved house the following year to be near our daughter and her family, which - although it was a great upheaval - was absolutely the right decision. Our daughter and her husband are wonderfully helpful both emotionally and practically, and it gives my husband great pleasure to see our two young grandsons so often. Our two adult sons and their families live some distance away, but they too are immensely supportive. Nonetheless, as my husband's illness progresses, life is sometimes almost impossibly difficult. My husband made some good decisions about financial savings, and so we are self-funding with regard to care. We have a good team of day-carers who visit three mornings a week to keep my husband company while I get on with jobs (including my part-time academic work). But the three attempts at respite care - one in a new residential home and two live-in carers through different agencies - have been disastrous. The carers simply did not have enough experience or expertise to manage my husband's behaviour properly. Added to which, we are not receiving the care and support from the GP and adult social care to which we are entitled. Despite my many efforts by telephone and letter, we are being blocked from accessing what I know we are supposed to receive in terms of a care plan, a named professional to coordinate and review it, and some support for me as a full-time carer. I sometimes feel utterly hopeless and angry about the way the system can abandon people in our situation. The Alzheimer's Society is a beacon of hope and support in this situation - but we need practical action.
Lesley
Dad was diagnosed with Alzheimer’s in February 2020 just before lockdown. We knew something wasn’t right but we didn’t know what. He was living independently but needed extra support and this grew and grew. In February 2023 my husband, daughter and I moved in to Dads home to care for him and in November that year I left my job of 23 years to care for dad full time. We have built Dad a care cabin in the garden so we all have our own space. It’s purpose built and will adapt as his needs change and we can hopefully keep him at home for as long as possible. Caring for dad is hard work alongside being a mother and wife but the hardest part is having to fight and shout for everything we need and for support. People living with all types of dementia need a voice and to not be forgotten. Dementia needs to be a priority and unpaid carers need to be heard. I am positive we can make dementia care better for all who have to encounter this heartbreaking disease.
Jen
This is my nan, Peggy, celebrating her 85th birthday with me and my family at her care home in July 2019, she was so happy and always smiling despite her dementia. She lived with Alzheimer's for almost 10 years until Covid-19 stole her from us in January 2021. Another pandemic can not be allowed to keep families away from their loved ones in residential care. My nan died alone in her bed when I should have been holding her hand!
She lives on in my heart every day as I work as a dementia adviser for Alzheimer's Society, I carry her, and all I learned caring for her with me as I support other people affected by dementia.
She lives on in my heart every day as I work as a dementia adviser for Alzheimer's Society, I carry her, and all I learned caring for her with me as I support other people affected by dementia.
Beccy
My Grandad, Arthur, died with Alzheimer's in 2021. I was extremely blessed to still have all 4 of my grandparents into my 30s, giving me a chance to really know them well. Grandad was a wonderful man - warm, witty and devoted to my Gran, they were married for 64 years.
Alzheimer's took away so much from Grandad - his independence, his freedom and at times his dignity - but even towards the very end there were glimmers of the old Arthur in there. I took this photo a month before he passed away and he was so pleased we'd taken his own sunhat into the nursing home for him - it's such a precious memory.
Alzheimer's took away so much from Grandad - his independence, his freedom and at times his dignity - but even towards the very end there were glimmers of the old Arthur in there. I took this photo a month before he passed away and he was so pleased we'd taken his own sunhat into the nursing home for him - it's such a precious memory.
Kirsten
I knew something was wrong.i begged doctor to test him.it took a lot of asking.when he had the brain scan told us he had frontal mixed Alzheimer's he was 80 I contacted Alzheimer's society.they told me get a power of attorney.i did with there help.on health and finance.people that have a diagnosis the carershoukd be told about power of attorney.while the patient can sign.goverments need to support families more so carer.i had to beg DVLA to take his licence as I was worried for other road users myself and him.they wrote doctor.doctor refused to disclose Trevor's medical in the end i went to see manager at rhe surgery .I had all the burden .I had a Tia .then coladped as i was trying to keep my promise he died at home.i felt i had let him down.he was tajen into a nursing home.he was in that one 18months .lots of neglect i took pictures.i know have got him in a lovely nursing home .he is 87 im 79 .it's been a long scary road for me.we have been married 62 years never apart.i go see him three times a week .there should be more help for the carer.more help in the home while living in there own home.seeing him go from a strong independent man.its true you lose them over and over again.
Brenda
I have lost my Dad for a very final time.
The first day he passed away, he knew that he would be leaving me, but his love was still there in his eyes for me.
The second time he passed away, dad was more confused than he had been, but the love was still strong and he was very much there in his heart for me.
The third time he passed away, despite my heart breaking, dad’s heart was still beating, so it took him forever to let go and finally leave me. We were both together as he passed through the final moments and finally left me behind, but as his heart was broken and mine was shattered, his eyes were still open and wouldn’t leave mine.
He held my hand tight as I talked to him and he listened before he took my heart with his one last time.
He is gone now forever, after fourteen years of hell. The dementia started slowly, but eventually it would impact upon so much more.
I don’t know where my Dad is now.
The effect of dementia is cruel and difficult for some, so Dad’s ashes have gone
Now my pain will never stop.
I miss my Dad, I am still grieving, but I am lucky that my dad loved me. He loved my brother and his grandchildren.
Help stop dementia.
In memory of those who we love
The first day he passed away, he knew that he would be leaving me, but his love was still there in his eyes for me.
The second time he passed away, dad was more confused than he had been, but the love was still strong and he was very much there in his heart for me.
The third time he passed away, despite my heart breaking, dad’s heart was still beating, so it took him forever to let go and finally leave me. We were both together as he passed through the final moments and finally left me behind, but as his heart was broken and mine was shattered, his eyes were still open and wouldn’t leave mine.
He held my hand tight as I talked to him and he listened before he took my heart with his one last time.
He is gone now forever, after fourteen years of hell. The dementia started slowly, but eventually it would impact upon so much more.
I don’t know where my Dad is now.
The effect of dementia is cruel and difficult for some, so Dad’s ashes have gone
Now my pain will never stop.
I miss my Dad, I am still grieving, but I am lucky that my dad loved me. He loved my brother and his grandchildren.
Help stop dementia.
In memory of those who we love
Karen
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?