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My husband was diagnosed with Alzheimer’s March 2023. He had been showing signs of forgetfulness and illogical thinking. He was prescribed Memantine and has taken them without obvious side effects. His short term memory is shot and long term memory also partially affected. We lost our dog in May this year and she was his constant but he can't grasp that she's gone. He asks about her many, many times a day. So sad. His personal pride is diminished. He needs reminding constantly to shower, change clothes etc. My tongue is bitten to pieces but we can still have a laugh and reminisc. Family support is forthcoming but they live 70 and 350 miles away! Not looking forward to the future but we married for better or worse and we have always looked after each other and I WILL DO MY BEST FOR HIM ALWAYS. Governments need to realise Dementia is societal EXPLOSION and they must get to grips with a joined up approach to research and treatment.

David my husband passed away on 19th August 2024 . He was diagnosed on 14 August 2019, it took a year to get him diagnosed. The worse for him was to take his driving licence away even though his driving was better than some other people . In all that time we had no help I cared for him myself with no outside help apart from a family member or friend who gave me a couple of hours off . David went into hospital and was discharged into a care home were he passed away 3 months later . I am now left with a care home bill because the accessesment and paper work was not done in time , not my fault , East Devon Carers . There is no back up from anywhere , alziemers all ways say look at the web site useless . We all have to just struggle on .

My wife began to show symptoms of poor short term memory in around 2015, at the age of 61. By 2016 she had had to give up her job as a cardiographer for fear of making mistakes. We went through the laborious process of assessment leading to a scan only to be told it was clear (I will never accept that). We then began a tour of NHS departments all to no avail. My wife’s condition deteriorated and she was experiencing headaches and shoulder pain. And so we began the assessment process all over again and the delay in seeing a consultant lead to us consulting privately. In addition to a CT she also had a SPECT scan and finally in March 2020 she received a diagnosis of Alzheimer’s (logopenic PPA). The private consultant concurred. Only then could she receive any treatment - Donepezil and Meloxicam, almost 4 years after her condition meant she could no longer work. No further help or follow up appointments were offered and it was left up to me to seek information and support about caring for a loved one with dementia.
I continued to care for her at home throughout this period but soon personal care became an issue especially when she became incontinent. In October 2021 we as a family took the decision that residential care was the only option. She had now been in care for 3 years, is non-verbal but not distressed thank goodness. She receives amazing care and is happy and settled but the symptoms should have been spotted and treatment begun so much sooner.

I was diagnosed with young onset Alzheimer's in march 2023 my life changed from diagnosis. my relationship with my wife changed everything changed my life and family relationships.Life can change in a minute from going to support groups to going out to lunch with the group .You make new friends and it's good to talk to other suffers who are going through the same as you. One of biggest problem is perception I do not not what day or month we are in I can be struggling day to day I seem to sleep a lot and forget what I was told by my wife so she also struggle to understand why. if it was not the support I get from the Alzheimer's society I would not be able to cope Thanks to the voices group I am in I can be positive about my diagnosis. Please when you get your diagnosis please get in touch with the society they are there to help you if you need to talk I am here to help.

My mother, at the age of 94, began to exhibit signs of dementia but remained amazingly fit and active for her age. Unmarried then, I was able to care for her, being already retired and we were living together in my house, which we had shared for several years. Over the next 2 years, her condition steadily deteriorated, her personality underwent change, and she developed uncharacteristic attitudes. I could not absent myself without paying for some temporary carers for overnight or weekend cover, and had to arrange respite care in a care home for periods of a week or more. I experienced the constant worry of arranging necessary care, and watched as she gradually lost control of her life. She did not like to go to any social circles, and hated to have to go into residential respite care. I had no close family support (brother and sister living too far distant) and the 24/7 responsibility began to take its toll upon me, and my wellbeing began to suffer. After much heart-searching, I had to take the hardest decision of my life - to arrange permanent residential care for my mother in an appropriate institution. I found the best one I could in the local area, and booked her place for February 2016. She was aware enough to know what was happening on the admission day, and I had to have my brother sit with her in the car's back seat, with the doors on child lock, so that she could not try to jump out. She did not want to be in the home, and on every visit (3 times a week) she insisted I should take her home, which was itself heart-rending. In the last week of April 2016, she suffered a massive stroke that left her paralysed on her left side, and unable to take nourishment in the hospital. Put onto palliative care, she never really regained consciousness, and died on the 5th of May. Had I known that was going to be her fate, I would have toughed it out for 3 more months so she could have stayed at home. Being her son and not her husband, I could not easily attend to her personal hygiene needs - another reason for placing her in a care home. Governments and people need to appreciate the burdens carried by those who care for victims of dementia, and the awfulness of the decisions one has to make about their futures.

My dad was diagnosed with Alzheimer’s in 2016 after a year of misdiagnosis. He suffered so much in the 7 years. Our family went through hell with this wonderful man. He was acutely distressed by the symptoms mostly by the paranoia and he couldn’t process what was happening. He was always a very clever practical man but he lost the ability to follow even the process of making a cup of tea, putting tea bags in the electric kettle is one example. As the disease progressed he had to be sectioned in hospital. The worse day of our lives but he was able to come home after a few weeks and stayed home through the Covid epidemic. Inevitably he grew more and more frail eventually he died because he couldn’t fight off a bout of flu. The suffering he went through haunts the family leaving us feeling unable to face life without him at times we miss him so much. People need to realise that dementia is not a mental disorder it is a symptom of a medical disorder, as anyone with any brain injury can suffer. Misdiagnosis due to unwillingness to invest in scans and other diagnostic opportunities just prolongs the agony leaving less time to prepare and try any treatments. The new drug therapy that is now available may save the NHS billions in treating the physical and psychological symptoms suffered not just by the patient but by the carers.

I retired early to look after my late Wife Pauline soon after her diagnosis & we had 10 years together before her death . During this time her condition advanced & I discovered NHS had available "Continuing Healthcare" provision which was assessed on a "Needs Basis" rather than the Social Security "Means Tested" arrangements. Alzheimer's Disease is a "Primary Health Need" so will qualify for help provided the daily health situation is impossible to manage without help. We qualified but this was only after an Appeal as I was not familiar with the requirements of the Assessment Procedure.

My mother was one of far too many to suffer and die from dementia, in her case in addition to covid. I spent several stressful years supporting her to stay home. The stress has to be experienced to be believed. Eventually, having day carers was not enough and social services would not fund overnight care. She had to spend almost all the income she had from reluctantly selling her house and take out a very expensive insurance policy to ensure her care home fees would be met when those funds ran out. In the event she did not need that policy, dying a few months before her money was spent. She was fortunate in having a place in a small, slightly shabby local care home with some staff who cared for all residents with love and attention. Being very hard of hearing and with poor eyesight, that individual care and good communication was vital for her wellbeing. Your manifesto, particularly in relation to costs and training care home staff, would help so many if this government implemented it. Too late for my mother but not for the many more people with dementia and their families.