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My mum Jean was diagnosed with Alzheimer’s disease in May 23, just after her 80th birthday, although signs of dementia had been prevalent for a couple of years. The pandemic took its toll on mum as she was on her own. We suspected it was dementia in summer 22 but it took quite 8 months to get a diagnosis and some medication. The medication really helped mum with her anxiety and memory at first. Mum came to live with me my husband and then 12yr old son in September 22. We have seen at close hand how this disease changes a person. At first I found it difficult to adjust and got irritated with mum’s forgetfulness and reliance on me for many things she had not long ago been so capable of doing herself. I no longer had her highly valued support but was suddenly her main support and carer.
I also found her character changes difficult to accept and understand at first - missing the empathy and compassion. Now that we have adjusted we’re focused on making every day as good as it can be for mum. I’m not working at the moment and am looking for work that fits in with looking after mum. Mum has recently started an Age UK dementia club and although she didn’t want me to leave her there for the day at first, she’s now made friends and absolutely loves it. It gives me a break too so I’m so grateful for it. The biggest challenge is keeping mum active because as soon as she’s in front of the tv she falls asleep. With a house to clean, shopping to do and family to support it can be hard to focus more time on mum. She enjoys doing some ironing, coming to the supermarket and going for a coffee but can’t walk far so trips are kept short. The next few years are uncertain but we will continue to look after mum at home for as long as we can. I still get occasional glimmers of old mum - she can still surprise me with a touching comment or action. She’s always been a great mum to my two brothers and I and we are all going to support her for as long as we can. Louise

My husband, who is now 88, was diagnosed with Alzheimer’s two and a half years ago. He was in the armed forces for 22 years, retiring in 1978 but every day now we live a military based life and his memories are vivid. We have been married for 62 years but he does not recognise me as the wife he married. He doesn’t want to live with me as he feels guilty misleading his ‘proper wife’ who he can’t find at the moment. He gets very emotional and doesn’t want to let his proper wife, or me, down. I cope so long with this until feeling particularly tired but it would be good to have an allowance from government towards a week of respite every couple of months to enable me to continue to be his Carer.

Dementia is a cruel disease. It takes away your memories and your dignity. You end up forgetting everything, even how to eat. We lost my father to Vascula Dementia, and the stress took my Mother, 3 months before my father. We knew my father was dying, but to be robbed of my mother as well, destroyed our family. My heart breaks every day since loosing them both. 💔

Both of my parents were diagnosed with dementia about 4 years ago. They were in their late 70s, were physically fit. led healthy, independent lives. They were diagnosed within months of each other. Life then changed horribly for them and for our family in a way that none of us had prepared for or could have ever imagined. Dad was a very intelligent, funny, gentle and nurturing man who devoted his life to his family. Mum was a caring and empathetic lady who was devoted to her children and grandchildren. Four years on and my father is in a Care Home. In his mind, he believes that he lives at home and drives to his job as an architect. In reality he spends his days staring at the wall, unwashed and wearing the same clothes, repetitively packing away his belongings and repeating the same phrases and questions on a loop. Mum is living at home with a live in carer. She spends most of her days in bed. Once diagnosed we have found that doors close. Their GP has not supported their care, the OPMHT has signed them off once and they struggle to access the most basic services. They are self funded and their savings will run out within the next two years. Despite needing 24 hour support, they cannot access CHC funding. Together they receive just over £800 a month in Attendance Allowance yet they pay £14000 a month for their care. This disease takes your physical, mental and emotional health, your loved ones, your memories, your independence and your dignity. To add to this, you have to pay for your own care which is the final insult.

Mom has Mixed Alzheimers & Vascular Dementia we knew she had it way before the diagnosis but with the Pandemic & dad dying of terminal brain tumour glioblastoma cancer 30th Jan 2021 it took until Oct 2022 to get her diagnosed her head scan was March 2022 August phone call from Doc Memory clinic Oct 2022 confirmed our night mare, we were begining to think she had glio tumour like dad. Its true that when its a full moon mom looses the use of her leg and falls , she is becoming less mobile. We have her on antidepresents and Memantine 20mg. As eldest daughter its fallen to me to care for mom, we become their "everything" as I put it, letters bills,food shop, bed changer, clothes shopper , med nurse, chief cook & bottle washer, as they say, hygienest, hairdresser, gardener, nutrisienist , the list is endless, a care givers mental health suffers, as we watcher our loved one decline Cognative and physical mobility, its a big responsibily and our own health and family life marriage etc takes a back seat. Its time for #CHC given to every loved 1 ,2years after full diagnosis . Its not right the NHS does not care for them, paid care in home shouldn't be the case , Ive not grieved for Dad as from day 1 took over moms care. After 52 years of Marriage for Dad and mom to lose them both to their brains ,both terminal with no care for both disease this has it me hard. Mom & Dad were good parents didn't deserve to end life this way, me at 53 didn't expect to be where I am sunce the pandemic losung dad and caring for mom.

Dementia has been a big part of my life for the last 10 years as both my parents had it. My father had vascular dementia and my Mum had Alzheimer’s. It’s been a tough, long ride. My father died 5 years ago and my mother died in January. They both withered away, my Dads body gave out in the end 18 months in a care home bed withering away, not knowing who we were. My Mum found him dead one day, having died in his sleep. The next day she had forgotten he had died, as she did every day, I had to sit with her and tell her every morning and watch that grief again and again, till eventually she forgot to ask where he was. We stopped telling her he was dead in the end and just said ‘he was not here’. She spent 5 years in a care home. The last 6 months were horrific - she became feral in the end, like an animal - I would not wish that on anyone. Their dementia has cost us £450,000, all their savings and the value of their house. The government does nothing for dementia patients until you have less than £23,000 left and then you have to beg for help. When they had Prostrate Cancer and Breast Cancer it was easier, as the NHS kicked in for their treatment, but nothing for Dementia. I want to remember them before the dementia - fit and healthy, doing lots of long walks, travelling, not the people they became. I have nothing but admiration for the care homes and how they looked after my parents. I haven't been able to go back yet and properly thank them, I think I am dealing with 10 years of grief at the moment and I need to work out what my new "normal" looks like. Rest in peace Mum and Dad xx