Dementia Support Line
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Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
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My husband is awaiting an appointment with the memory clinic. He knows his memory & concentration are not as they were but it's difficult as I can't ...
In 1987 my Father who was 86 started being forgetful and,on one occasion tried to get me to kiss him. I told one of ourwelfare workers and she advised taking him to...
My mum was diagnosed with onset dementia last year...
I flew from Alabama to Santa Barbara, then to French Hospital to visit my father. He had
open heart sugery. Hi Dad you look great. Dad replied," I don't know when...
Mummy was my first role model. Not a prima-donna, but...
My wife, Eve, was diagnosed with Alzhiemer's about 10 years ago after coming home from work and repeating, "I think I'm Loosing it". We also did voluntary work at the...
I care for my husband who is 86. He was diagnosed...
First of all it took me three years to get my husband diagnosed with Alzheimer’s and that only happened because I went to the London imperial hospital and managed to...
My husband was diagnosed with mixed dementia nearly 4 years ago and I am his carer. At his recent dementia review, the gp asked how I was…. the first time that a...
From what I have seen although dementia is much...
My husband died in March 2023. I don't suppose my experience of his decline is any worse than others but I feel very strongly about the almost complete lack of...
My husband was diagnosed with mixed Alzheimers with...
My husband is awaiting an appointment with the memory clinic. He knows his memory & concentration are not as they were but it's difficult as I can't mention the word dementia to him as I don't know what effect that would have on him. My daughter is supportive but it feels lonely as I don't want to talk about him behind his back as it seems so disloyal.
In 1987 my Father who was 86 started being forgetful and,on one occasion tried to get me to kiss him. I told one of ourwelfare workers and she advised taking him to his GP (she suspected Dementia) which he had and died in1988. My Mother developed it in 1988 when we shared a house in which she had an annex. Hers was much more traumatic and difficult as she had most of the symptoms, wandering,outbursts etc and had to go into a Care Home 6 months before her death. My Sister in Spain now has Dementia and I am advising my Brother-in -Law and Niece. cope
My mum was diagnosed with onset dementia last year but still realised at times she us forgetting things, she has good days and bad. But now we think my father has it my sister is arranging an analysis test for it but doesn’t know about this yet. So the future looks like having to look after snd care for both but in my eyes they’ll both end up having to go into a home. This illness really needs raising awareness of snd more research somethings got to be found to help people with it !
I flew from Alabama to Santa Barbara, then to French Hospital to visit my father. He had
open heart sugery. Hi Dad you look great. Dad replied," I don't know when they are going
to do my surgery." I could see his chest, all the stitches and tubes. He was 70 I believe.
This is what it's like having a parent with dementia. For myself this is what I have to look
forward to. Mild Cognitive , I'm depressed. I fear the years ahead.
open heart sugery. Hi Dad you look great. Dad replied," I don't know when they are going
to do my surgery." I could see his chest, all the stitches and tubes. He was 70 I believe.
This is what it's like having a parent with dementia. For myself this is what I have to look
forward to. Mild Cognitive , I'm depressed. I fear the years ahead.
D
Mummy was my first role model. Not a prima-donna, but quietly kind with a quirky sense of humour, or shy but dry as my father described her. She was fiercely loyal, and always true to herself and others. She developed Parkinson’s and then Alzheimer’s after she retired from teaching, and died in 2019 from double pneumonia and complications connected to her Parkinson’s and Alzheimer’s sufferings.
My reality of dementia is that it is a condition that pays no heed to how hard you worked, how much you used your brain, or how you lived your life. I learnt that it is impossible to predict, and that each time I thought I had adapted to what was happening, there would be a new change. I needed to learn new skills and to think differently. I learnt how to guide mummy through the unexplainable action of how to get into the car, I needed to talk when I didn’t want to talk, I adapted to a new daughter mother relationship, and I missed our old relationship so much, crying every time after I had visited mummy.
But also, one other thing that I really want to share, something else that I learnt that I wish people knew. I celebrated special moments - and these special moments were different to what had come before. They included a time Mummy phoned me after many months of her not being able to manage the phone (it turned out to be the last time), when she enjoyed a meal I had cooked, and when she smiled when I told her how proud I was of her one of the last times I visited her in hospital. And now she is gone, I am desperately pleased that I was able to see those moments as special moments. I miss her every day.
My reality of dementia is that it is a condition that pays no heed to how hard you worked, how much you used your brain, or how you lived your life. I learnt that it is impossible to predict, and that each time I thought I had adapted to what was happening, there would be a new change. I needed to learn new skills and to think differently. I learnt how to guide mummy through the unexplainable action of how to get into the car, I needed to talk when I didn’t want to talk, I adapted to a new daughter mother relationship, and I missed our old relationship so much, crying every time after I had visited mummy.
But also, one other thing that I really want to share, something else that I learnt that I wish people knew. I celebrated special moments - and these special moments were different to what had come before. They included a time Mummy phoned me after many months of her not being able to manage the phone (it turned out to be the last time), when she enjoyed a meal I had cooked, and when she smiled when I told her how proud I was of her one of the last times I visited her in hospital. And now she is gone, I am desperately pleased that I was able to see those moments as special moments. I miss her every day.
My wife, Eve, was diagnosed with Alzhiemer's about 10 years ago after coming home from work and repeating, "I think I'm Loosing it". We also did voluntary work at the local Hospital as Chaplaincy visitors. Again Eve kept saying that she could not converse with patients. To cut the story short, we both stood down from our voluntary work. Eve did become worse over the following years, I became her Carer, that became a huge responsibility. In August 2022 Eve was admitted to a Care Home and is very well cared for. I visit very often but she hardly knows me or family members any more. I miss Eve extremely and do not like living alone, I feel that Eve is entering the final stages of this miserable disease also I feel that she died long ago. Eve has no quality of life any more, dignity, beauty and all alse has gone. Eve was a very intelligent woman and held very responsable jobs, dealing with numbers etc. I know there are many others in this position with loved ones, but sometimes I think that I am the only one. Bless you for the work that you are doing.
I care for my husband who is 86. He was diagnosed 2019 after our daughter and I had concerns about his mood swings. We were told he had had it for a few years which then made sense. Medication has made a lot of difference to reduce the frustration he gets but his memory is not so good now.
We have both taken part in dementia research over the last 4 years and are now part of a 2 year research at Southampton research Centre.
Dennis keeps his mind active by reading and watching documentaries. I have notes around the house to remind him of certain things that he finds helpful so he is able to do things on his own.
We have both taken part in dementia research over the last 4 years and are now part of a 2 year research at Southampton research Centre.
Dennis keeps his mind active by reading and watching documentaries. I have notes around the house to remind him of certain things that he finds helpful so he is able to do things on his own.
First of all it took me three years to get my husband diagnosed with Alzheimer’s and that only happened because I went to the London imperial hospital and managed to get my husband on a trial. They diagnosed him after tests , MRI scans and PET scans.
I took him to see our GP numerous times, but because he could answer simple questions they wouldn’t refer him for more tests.
I have recently had to reduce my hours at work to twelve , so that I can look after my husband and try and claim carers allowance, as I am 10 years younger than my husband I have 4 more years until I can claim my pension. We are trying to manage on a very small amount of money each month, we can’t claim universal credit or pension credit, so we will not qualify for any heating allowance as my husband only gets attendance allowance and this doesn’t meet the criteria .
The emotional side of Alzheimer’s is even worse, we have been married for 41 years , but the person I married has changed so much, it’s heartbreaking.
I have some lovely friends and family, but I feel very lonely and sad, as my husband forgets what I tell him , he is no longer my best friend and confidant.
I am about to enrol my husband on another trial, that Alzheimer’s research gave me information about, I am hopeful that he will be given the drug and not the placebo, and that maybe with luck we can stop the Alzheimer’s from getting worse, and by that time a new drug might be approved on the NHS , and everyone with Alzheimer’s will be able to benefit from all the recent advances and not just the people who can afford to go privately.
I would like to say a big thank you to Alzheimer’s Research because they have given me lots of advice, and hopefully by doing the trial we can help the future generations and stop this awful disease.
I took him to see our GP numerous times, but because he could answer simple questions they wouldn’t refer him for more tests.
I have recently had to reduce my hours at work to twelve , so that I can look after my husband and try and claim carers allowance, as I am 10 years younger than my husband I have 4 more years until I can claim my pension. We are trying to manage on a very small amount of money each month, we can’t claim universal credit or pension credit, so we will not qualify for any heating allowance as my husband only gets attendance allowance and this doesn’t meet the criteria .
The emotional side of Alzheimer’s is even worse, we have been married for 41 years , but the person I married has changed so much, it’s heartbreaking.
I have some lovely friends and family, but I feel very lonely and sad, as my husband forgets what I tell him , he is no longer my best friend and confidant.
I am about to enrol my husband on another trial, that Alzheimer’s research gave me information about, I am hopeful that he will be given the drug and not the placebo, and that maybe with luck we can stop the Alzheimer’s from getting worse, and by that time a new drug might be approved on the NHS , and everyone with Alzheimer’s will be able to benefit from all the recent advances and not just the people who can afford to go privately.
I would like to say a big thank you to Alzheimer’s Research because they have given me lots of advice, and hopefully by doing the trial we can help the future generations and stop this awful disease.
Kerry
My husband was diagnosed with mixed dementia nearly 4 years ago and I am his carer. At his recent dementia review, the gp asked how I was…. the first time that a medical professional has asked in nearly 4 years. She also said “ you’re on your own through this you know.” A worry for me is that our very hard earned life savings are going to be used for his care. It feels very unfair that care for other end- of-life illnesses are funded by the NHS but dementia sufferers are expected to pay for their own care.
Eleanor
From what I have seen although dementia is much talked about there is very little acknowledgement of it. My husband and I try to go out as much as possible. We go shopping mainly in Sainsbury's and we are disappointed that they don't make any allowance for the problem by making a dementia friendly checkouts. There is very little allowance generally anywhere. It is hard to see people who live with you go down hill but there's so little help available unless provided by volunteers. I don't think charities offer much help. We have been told that we can have a phone call which doesn't mean a lot to me. Many people have problems with their partners and find it hard to cope. How do we pay for care if you don't have any money. I wish there was more attention paid to this.
Carole
My husband died in March 2023. I don't suppose my experience of his decline is any worse than others but I feel very strongly about the almost complete lack of support or understanding from his GP, hospital A & E, Mental Health Services or Care Home (an absolute disaster). Most people still don't understand what dementia actually means and the impact it has on the sufferer and carer. Luckily, I was eventually able to get really good care at home for him from a good agency (paid for, of course) in the last few weeks of his life. It meant that he died in his own home and not alone in some strange hospital bed. We were lucky in that there were enough savings to pay for care at home - goodness knows how people cope without this support. Luck of the draw I guess.
Carole
My husband was diagnosed with mixed Alzheimers with vascular dementia in 2018. He had always been so active and decisive and it was truly sad to see his capabilities diminish. He is now bedridden as he lost the use of his legs and can no longer talk but he is being cared for at home by me and I have a good care package in place which we are self funding at the moment . When the money runs out we will have to depend on social services. At the moment he is content, still eating and very well loved. I’m not sure if he knows that I am his wife or just someone he is used to seeing. It’s been a couple of years since he said “I love you.” I miss that.
Kate
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?