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It's a lonely road - the road of partners, family and carers. When your smart, funny, intelligent husband begins to disappear at the age of 62, it's terrifying. Young Onset Alzheimer's seems to be quite unusual and it's very hard to find appropriate support options for Martin. The options just don't fit with his symptoms or age group. He is still physically fit and mobile - but mentally that's a whole different picture. Almost 2 years on from diagnosis, Martin is unrecognisable. His executive skills have all but disappeared, his personality is muted and he struggles now to find the words to express himself. He relies on me totally and yet he thinks he's ok. I fill our life with activities, trips, friends and family in a bid to keep him entertained. If there was a choice to run and not come back, I'd be gone, but I could never do that. So we continue our existence and thank God for our wonderful friends and family. I would be in a dark and sad place without them. They make me laugh, allow me to have an afternoon or evening to myself or just simply treat us like the happy, fun couple we used to be. It's not just the sufferer who is affected, it is everyone who loves them. It's hard not to feel bitter, but what would be the point, you just have to hold your head up and focus on getting through each day, one day at a time.

I knew there was something wrong with my amazing dad, he had been a maths lecturer before retiring and loved spending time with his grandchildren. He forgot all his PIN numbers for his bank cards which was not like him, he also left his granddaughter at school, after forgetting to pick her up.
He was diagnosed with Altzimers in January 2019 and he died in December 2021. These 2 years we spent as a family fighting for everything, there was no help from higher up organisations as they don’t see it as important, we were refused a blue badge as we were told it’s Altzimers it didn’t justify a blue badge,Why ??? But in the process of trying to get help you are watching that person you love, who has brought you into the world slowly dying infront of you. I received a lot of help from the Altzimers society of which I thank you.

My late Mum was diagnosed with vascular/Alzheimers. My mum’s dementia deteriorated quickly in Covid. Care she was receiving from out in community care was no good. My mum was neglected. My mum was bed bound unable to do things for herself. I had I fight to get her into a nursing home that suited her needs. Social services was not easy to talk to. It was also a big impact on myself and family well being. Each person and family needs the right help and support who’s loved suffers with this cruel disease that’s the biggest killer. Price of nursing care homes is absolutely ridiculous. I feel if you only come from middle class family they do not the right to the have best care as people who have money. It’s all about equality isn’t it? This needs sorting out! My mum had bedsores from where she had carers go into her flat that eventually went right down to her nerves on bottom where she was getting rotated and wasn’t prompting her medication as it was discussed because she wasn’t sound of mind to remember to take her medication. The fight to get her to a care home was appalling. A social work assistant done an assessment said she was to go home and what right did I have to say she was to go into nursing home. As apparently my mum had capacity. I thought only a social worker could do an assessment not a social work assistant. Has I was my mums support and carer of family I went through hell. I don’t want his to happen to another family suffering to be heard and get the support the person suffering with dementia as well as a good support for family going through it and to understand it.. I did manage to get my belated mum into a lovely nursing home by me where I had to find extra top up £98 a week. Of o couldn’t fund it they were going to put my mum in another care home quite far from me. Visiting would of been 11 am -4pm week days not weekends. Where I work and my mother would not get a visit from her grandchildren. Unfortunately my mum passed November 2023. I feel if I could of got her into nursing home earlier maybe she would of been a lot more stronger with the right support.

My husband Chris was diagnosed with Alzheimer’s in 2019 after at least four years showing signs of memory and cognitive loss, aged 56. He was an investment banker and probably the most intelligent person I’ve ever met. I care for him full time as well as looking after our grandsons 1 or 2 days a week. They bring us so much joy. Our 4 children are devastated by the loss of the father they knew but ran the London marathon this year raising over £25k for the Alzheimer’s Society. We have participated in at least seven pieces of research including a clinical trial but Chris’s symptoms are now too severe for further research. We continue to soldier on day by day. We’re both 61 now and physically fit but our lifestyle is one of just getting through each day. I have no help and there’s such a difference between Young onset dementia compared with the impact dementia probably has in old age. Chris is not often unhappy and nor am I, but I just can’t see an end to it. I can’t leave him on his own because he needs someone around to reassure him and help him with the simplest things but he doesn’t know I’m his wife any more, despite being married for 36 years. There isn’t anything he wants to do except find a job again, (which he could never do) so we just go about our lives, me doing what I have to do, with my doting shadow following my every step.

I was first told 12 years ago, that after a few tests ,they thought I had vascular dementia, and I would be called back in a year , I think it was , many trips to the Dr over the years , I was finally told in January this year 2024 , that yes I had vascular dementia, How did I feel , actually gutted, and to be honest alone and afraid. Eight months later I still feel the same.

Dementia stole my glamourous rebel of a grandma from me. I was travelling the States with my Grandma when I first noticed. Out of her normal routine, suddenly the reality of her memory became clear. I rang my mum in tears. My Grandma and I had been planning our world tour together since I was young. I was scared. I had seen what dementia could do - both my grandma's parents had suffered from it. The dementia slowly imparted itself into my Grandma, chaning how she could relate and interact with the world beyond her mind. What I wish people understood, is that the person is still there behind the cognitive decline. 11 years post diagnosis, my grandma was now in nursing care. She was still as determined as ever (a handful for the staff) but my mother could no longer provide the level of care my grandma needed. I remember at this point telling my grandma that I was sorry I hadn't visited for a couple of weeks, but I had had surgery so couldn't come over. She communicated non-verbally her worry instantly. The lucidity came and went, but my grandma was still there.
What needs to change:
- Support is a postcode lottery. It is VERY patchy and location dependent. A lot of reliance on charities. Even the local authority support is variable and there does not appear to be continuity if you move between areas.
- Support for families who want to look after someone with dementia at home (my mum had zero support for the 5+ years she was caring full time)
- Recognition and resourcing across the care sector that dementia patients are still individuals; listen to the families. Support the person to enjoy the cappuccino in a cermaic mug , rather than tea in a plastic beaker.
- Care sector resourcing - my grandma lived in a home with a beautiful garden but she was rarely allowed to go outside (except when we took her). Resource for activities, social integration, exercise. These essentials were few and far between,
- Investment in the care sector - these institutions become people's homes and yet they can feel so unwelcoming, cold, more like a prison. They should be places everyone wants to spend time, not a last resort.
- Social acceptance for those with dementia; we would take Grandma out for meals coffee etc when her dementia was moderate / advanced
- Address common practices of sedative medicication to make dementia patients 'easier'. My grandma was given medication without our consent for several weeks in her first care home. She lost the ability to speak and it never returned.
- I miss my grandma every day