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We've grown up together. My wife is part of who I am. Together 57+ years, married 56+ years = a lot of emotional investment.
I've been full time home caring for 7 years+. Seeing the person I love gradually lose skills and abilities and interests has been very hard. I had to have counselling for my anticipatory grief.
Not being able to talk with my other half, nor exchange ideas and views, argue and debate has been so difficult. We live together but far apart. Unless you are involved I don't think you can fully understand the carer's strain, tiredness, helplessness, and especially the loneliness. The relentlessness get's you down, but I'm not out! The power of love and positive thinking will help me help my wife in her darkest hours. National, local or social care services seem offer nothing - they should offer free respite in view of the £m's carers save the state. . A break would be nice, even if temporary. I just hope I can look after my wife until the end, however long that is - who knows? - without becoming a patient myself.

My husband was finally diagnosed with Alzheimer's Disease a year ago. I had been aware of the signs for the last few years as his mother died of the disease. I am 82 and he will be 77 this month. He had been a very clever man and able to do most things. Together we doubled the size of our last house, built a narrow boat and bought a Victorian lodge house with one and a half acres of grassland and trees which he looked after. He had been a racing driver as a hobby and we have a collection of 8 garages which were built for his collection of cars plus a very large workshop. His early career was working as a production engineer and was part of the team at EMI when the first brain scanner was invented. He went on to be responsible for all the spare parts and repairs of the CT and MRI scanners throughout Europe and the Middle East in the 80s. Now he has difficulty trying to fill the various bird feeders without my help and is unable to find anything in his workshop. He recently was taken into hospital with a large kidney stone and a serious kidney infection. With all his other health concerns the urologist warned us that he may not survive the operation. At the moment he has carers coming in during the morning to help him get bathed and dressed. He is 6' 5" so it would be more difficult for me to help him. I managed to persuade the care people to let him have a bath lift. He has no memory of his 2 week stay in hospital, let alone that he had received surgery. Before the care plan could be put in place, I had to persuade the hospital staff that I needed to get him home because he was crying all the time in hospital and that I could look after him until the carers could come in. We have a son very close, but who now runs our business and spends a lot of time working away from home. His wife has many commitments of her own as well as struggling to cope with an autistic 6 year old plus helping her 11 year old daughter with her commitments. My husband lost his driving licence so I have to do the driving and we are not able to get to a bus stop easily as there is no pavement on our side of a very busy main road. I also have mobility problems so I have to use my car, fortunately I have a Blue Badge.

Mum had started to forget things and was repeating the same thing. Dad looked after her without telling me the severity of her symptoms. It only came about when he ended up having a huge heart operation and he begged me to stay at their home and look after her. I nearly had a breakdown in those two weeks I don’t know how dad coped. Once he was home I asked him and he replied with in sickness and in health is what my wedding vows said. That broke me this poor frail man in front of me had struggled for a few years trying to care for mum because he wanted to keep her with him at home even though his own health was suffering. I didn’t know she had hit him that he couldn’t have the tv on as mum thought she was been watched she wouldn’t let him open curtains for the same reasons Above and beyond my dad took his marriage vows and for that I was so proud of him. For reasons I won’t go into dad ended up going back into hospital and I admitted I couldn’t cope looking after her. I felt so guilty. Social services came and organised a care home for respite. I visited her every day and she just kept asking when she was going home. Heart breaking. Then when dad was better social services told him mum should stay so he could continue with his life and look after his own health he would never agree to that, in the end the decision was taken out of dad’s hand and she stayed as a permanent resident. Dad felt guilty and cried feeling like he had somehow failed her when in fact he had done more than anyone could have ever known. What really broke me was when we visited mum and she accused me of having an affair with her husband… my dad. That has never left my mind to this day and I know it really distressed dad too. Gradually after a number of years she deteriorated to the point where she stopped eating and drinking and we finally lost her for the last time in 2018 aged 80. My dad moved himself into the care home to be near mum he sold the family home to fund this he was so lonely and lost. The government really need to sit up and realise what devastation this horrific disease causes not just to the individual but the family around them. Try explaining to a 3 yr old why great grandma is lashing out and shouting for no apparent reason. If there is a drug out there that will help let people have it forget the politics and costs families do not deserve to see their loved ones go through this horrific disease and what about the families …help them before this disease gets to them. I’m terrified of ending up like mum. We need action now and more help especially when we all know medication is available and not been allowed to be used. I bet it would be so much different for all the politicians families with their loved ones receiving the very best of care. Find a cure give more help and let the drugs become available through the NHS. This is only a very small account of my experiences with mum. I only wish I had more word count to continue.

Alzheimer is such a subtle thing it creeps up on the person and gradually takes their life away . My mum was lively chatty and friendly but slowly these things disappeared . They were replaced by anxiety frustration and quite often anger . There were lucid moments when you thought this is going to be o.k but I likened it to the beam on a lighthouse flashing on and off. It wasn’t o.k and gradually my happy mum disappeared not always knowing who I was medication didn’t seem to help much and spent 5 weeks in hospital and finally succumbed to pneumonia.this has to be the cruellest of diseases and when I see the advertisement on tv where the mum doesn’t know her son it brings it all back to me and I cry again you don’t lose your loved ones to Alzheimer they die again and again . So you are grieving for that person again and again thank you for listening

My husband has middle stage dementia. I am his Carer & organise everything he needs, as well as all our domestic and financial arrangements - even through my 6 months of breast cancer treatment when I was so ill. Our “children” had to take time off work to help out. It was very hard. It still is - a spouse loses their freedom, their holidays, their sleep and their health. Governments must do more to help us.

the fact that there is no help only councelling phone calls. everything else has to be paid for.

My mother and older sister have both died in dementia care homes. I expect to do the same.

My lovely wife, almost 74, live wire, parent. grandparent, great grandparent, lover and best friend - described by Ofsted as an out standing teacher and headteacher, with whom I have travelled to nearby Europe and Eastern Europe, Australia and parts of USA, shared the towing/driving of a caravan to Venice area every year for ten years - is sitting lost in a chair in her dressing gown remembering things and people that she has made up, lost in a world of make believe that changes from hour to hour. As men become ‘she’, relatives long dead, maybe sitting in an empty chair across the room, are coming to see us. Probably, ,later today, I will be accused, sometimes aggressively, of strange fictitious things but. she will not remember real events, or possibly whom I am as I become others. I am left at 83 after many years of full time care and loving, cook, caretaker and carer, looking at what appears to be the scrambled broken bits of many jigsaws but no picture!

It took a long while before the doctors agreed that my wife had dementia. They kept doing simple memory tests which my wife would pass. But I knew something was wrong, but they brushed me aside for a long time.
Eventually, after pushing for more tests, she had a head scan and they agreed she had vascular dementia. I now wonder if it had been spotted sooner, if more could have been done.
I get some help with carers twice a week and I did have visits from the dementia intensive specialist team nurse. She was a real help, but she has now told me I will be signed off as they only help short term. Probably because of my age its confusing to know who else to turn too.
Some days are not too bad and I can cope, but every now and then my wife finds hidden strength and manages to walk to the door, and tries to leave the house as she says she is going home. I have to lock all the doors and hide the keys. She is incontinent , deaf and normally cannot walk more than a few steps, she also loses her balance easily, and has had some nasty falls.
It is sometimes a struggle to manage to look after her.. In the occasional clearer moments she sometimes says why don't I put her in a home, but I love her and so its not a something I want to do. I sometimes feel trapped as I cannot leave her on her own even for a few minutes, as her short term memory is none existent.
Its a blessing that I have carers who come twice a week and get me a bit of time to breath. When I have to call out an ambulance, if my wife falls they are always really good and helpful.