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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.

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.

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.

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.

My father was diagnosed with Alzheimer's Disease and we had been unable to get a diagnosis from the GP initially. Age UK and the Alzheimer's society were extremely helpful and I would advise that these are the people to turn to. He was eventually referred to the hospital and received a diagnosis.
He was looked after at home and had carers to help with showering twice a week but as COVID struck the carer voiced that he should be looking after poorly people which proves there is a lack of training and understanding. We arranged for him to attend a day centre that we paid for £50 for a day and extra for transport which again raises the point a lot of people would not be able to afford this.
My father's condition progressed and he was sectioned under the mental health. He was in hospital for a number of months and slowly deteriorated. He was fully mobile when admitted but came out in a wheelchair. He remained on a section and it was decided to transfer him into a nursing home that had mental health status. The care worker was excellent and luckily he went into an agreed place to live but if there had not been a vacancy there he would have been placed in a different place and this could have been out of town which then poses a problem for visiting for some people.
We are also lucky that one of our MP's in our town is Debra Abrahams who is joint Chair of the Alzheimer's and Dementia Group in Parliament other people may have MP's with little experience of the disease.
During the time before my father passed away after COVID restrictions had lifted we visited my father and we lived in the here and now as with any illness people change as their illness progresses. We played him music and we sang the songs for him. We laughed which made him laugh to. We made memories and tried to have fun with him. I fed him and he used look at you and often spit the food in your direction and I would shout duck he's spitting and I would say that's naughty but smile at him then he would smile.
The two days before he passed away he opened his eyes which he had not done properly for ages and he told us he loved us.
We regard those as special memories. We had had a time where we could not see him due to Covid so make the most of the time you have left with your loved ones.
I am sorry but the advert about a person keep dying is not true in my mind they only have one passing and that is at the end the rest is just a progression of a disease like any other and remember there is always somebody who understands and to talk to.

My wife has Alzheimer's Disease and I have cared for her full time since the symptoms became apparent in 2019 and her diagnosis in 2021.
I've learned some things I'd like to share.
Firstly, it's not the fault of the sufferer that they have dementia. It's not due to a lifestyle choice such as nicotine, alcohol, hard drugs, or anything else.
Neither is it your fault.
Initially, I made the mistake of doing everything for my wife, which made her more dependant on me than she might have been at that stage.
I thought I could manage everything myself without outside help - another mistake. Do ask for help, it is available and is not a sign of weakness..
Learn how to look after your own mental, physical and spiritual health.
Sufferer and family all are affected but in different ways.
Be prepared for friends to fall away, they simply don't know how to deal with it.
Lastly, don't feel guilty if you need respite, even a few hours off each week becomes a blessing. You need to recharge your batteries because the fight isn't over.

My lovely Dad passed away this year after living with Alzheimer's for around 8 years, with the latter 3 years living in a care home. Nothing can prepare you for it as a family member who finds themselves with the responsibility of navigating their loved one through this awful disease; the sadness, the grieving (many times over, step by step), the frustration, the fear, the anxiety, the confusion, the guilt.

None of us knows how our lives will end, but if you have Dementia, you have the added burden of fighting for care funding and not really knowing what to do or what you're entitled to.

People who haven't been through the Dementia journey with a loved one, may think it's an extreme form of forgetfulness. It's not ... it's everything, both mental and physical decline. My husband and I make a point of calling it a Disease of the Brain ... it's basically your brain 'packing up' .. and the way an individual's brain 'packs up' gives them their unique Dementia experience. Why should people with a brain disease be treated differently in terms of care, than those with heart, liver, kidney problems... broken leg .... ? This can't be ignored any more ... as we all live longer and survive other illnesses, many more of us will end our days with Dementia.