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My Mum poor Mum was only 63 when she died of Young Onset Alzheimer’s disease. She tried to obtain a diagnosis for years, going back and forth to the doctors being told she had depression and anxiety, or putting her symptoms down to the menopause. It drove her to despair knowing there was something else wrong but not being listened to by the medical professionals.

It was only when her symptoms were abundantly clear to us, when she could no longer hide them that we were able to help her by accompanying to appointments and assisting her to communicate and provide supplementary evidence to get a diagnosis. It still took a further 18 months from when we were involved - she was diagnosed at age 57 and it meant we were more easily able to get the benefit and social services support she required to help her to continue to live independently for as long as possible. What we found was that she had a brain scan 12 months prior to diagnosis when she had a bleed on her eyes - that showed brain shrinkage- a hugely missed opportunity and incredibly disappointing!

Her decline from diagnosis was brutal - dying within 5 years. Getting an earlier understanding could’ve meant she didn’t live with the immense stress and uncertainty of knowing something was seriously wrong and making it easier to access the support she was entitled to and deserved. Sadly, everything was a fight throughout her journey.

It should be much easier for people to access diagnoses without having to fight and go through undue stressors on the path to understanding they have a terminal illness. There should be greater support pathways surrounding them post diagnosis, so they and their families are guided on ‘what next?’, instead of relying on piecemeal information and the incredible work of charities. Especially as dementia is a leading cause of death in the UK.

My mum was referred in 2021 for a memory clinic appointment but because she was afraid and the stigma of people with dementia she refused the appointment. She has been diagnosed with moderate Alzheimer’s in January 2024 after checking her mail so she went. A diagnosis means she is finally on the right medication and we can understand how best to help. It’s tough trying to find suitable groups as she doesn’t want to be labelled as stupid. I would like to see more help and more counciling and coaching for careers we were told she has it and that’s it.

My wonderful sister worked with the group, supporting the carers and singing with the affected. She loved it. She passed away suddenly on 29 th May aged 65….way too soon. They wanted no flowers but donations in her memory. Elizabeth (our beloved Lizzie) gone but never forgotten

My lovely was taken from by a massive stroke. Before that, for four years she was in a fantastic care home suffering with dementia. I tried my best to keep her at home but. Vascular dementia beat me and no matter how hard I tried to cope I became a stranger to her and me her full time carer. The kindest thing was to place her in a home where she was looked after professionally and with loving care

Dad was diagnosed with Alzheimer’s in 2017. It wasn’t a total shock. We’d noticed him becoming forgetful and had noticed unopened post stacking up. Sadly Mum, who had always relied Dad, didn’t take the news well and retreated into herself whereas Dad didn’t really understand or comprehend what was happening, he had always been the one who dealt with everything from driving, shopping to paying all the bills. A keen runner over the years who had completed many half and full marathons including the London marathon 3 times. A man who also loved his profession as a train driver.

I really tried as hard as I could to help. Between having a young family of my own and working full time it was not easy. Weekends were taken up with helping my parents with all their chores, shopping and cleaning plus trying to spend time with my own family. My brothers helped as much as they could but lived a long way plus also worked full time. Try as I might, I engaged help from outside parties but both parents always refused help and thought they could cope as in their minds nothing was wrong.

Sadly Mum passed in December 2022. We had the terrible decision of having to place Dad in nursing care. I offered him many times to come and live with me and my family but sadly he always said he was waiting for Mum to come home as he was unable to comprehend that she had gone.

Dad passed away 2 days shy of his 85th birthday on 02 March 2024.

On this Fathers Day I struggle with the knowledge for the first time I am unable to buy Dad a card and gift. A wonderful father who always put his wife, children and grandchildren first.

Thank you to Alzheimer’s Society and all those who work and experience living with dementia. Being able to talk to those who have an understanding of what we were going through will always be appreciated.

My mum and dad were inseparable; they owned a sub-post office; worked side-by-side and spent every hour of every day together.
Their love for each other was all consuming, and was such a joy to see.
Unfortunately, mum had a stroke in 2021; which ultimately resulted in the onset of vascular dementia.
Whilst my dad (85) initially was able to care for her at home; she had a severe neurotoxic reaction to a change in medication. This notably accelerated her dementia.
Within a matter of days, her presentation changed dramatically, this especially with the increase in aggression, agitation.
As if the vascular dementia was not enough, she was also diagnosed with BPSD, comorbid depression and paranoia.
My dad was devastated, and felt (at that point in time) he could no longer meet her care needs at home any longer; hence we sought a suitable alternative.
Mum was assessed and required 24-hour constant one-to-one care/monitoring.
Unfortunately, two dementia friendly care homes, they were unable to effectively manage her behaviour.
In the first care home she was left unattended and pulled a wardrobe on top of herself, resulting in severe injuries. At the second EMI care home, notice was served (out of the blue) after 7 weeks of residency, because her care needs far exceeded what the care home had anticipated.
No local care home was willing to accept mum owing to her behaviour and the disruption she caused; the only other option offered was that of a mental health facility.
We were unwilling to put mum through any further torment and upset; being separated from my dad was quite obviously having a detrimental effect to her well-being. Dad himself was very depressed, as he felt he was abandoning mum. Hence, he made the monumental decision to bring mum back home.
He was the only person whom could effectively manage (to some extent) her care needs. Mum just wanted to be with him, as she always had been.
Mum coming home, ensued in a huge battle with Continuing Healthcare.
Whilst the ICB were willing to fund my mum whilst she was in care homes, when she returned home, they ceased funding. They seemingly were of the opinion, because she had returned home, her care needs had dramatically reduced!
A DST meeting was a shambles. Everyone involved in mum’s care (social services, the mental health team, the carers, mum’s GP), where all in full support of mum receiving Continuing Healthcare funding. The assessor submitted a report which contradicted the viewpoints of all the professional healthcare members attending the meeting.
Whilst everyone involved in mum’s care could see she was drastically deteriorating; a stranger made the decision her healthcare needs did not warrant any funding.
Mum sadly passed away, 4 months after she was deemed ineligible for any funding.
She was at home, where she would have wanted to be; with her precious husband and her family surrounding her with all the love she needed.
I submitted an appeal to the ICB, and also raised an official complaint owing to the significant breaches of the National Framework by Continuing Healthcare at the DST meeting.
This complaint has now been escalated to the Ombudsman.
Out of the blue (and prior to an appeal), we have recently received a letter from the ICB that they have now decided to refund all the private care fees dad paid.
The letter has provided no explanation as to why there has been a change of heart by the ICB. We suspect, it could be they are aware the matter has been escalated to the Ombudsman and are trying to deflect their oversights.
Families caring for their loved ones have to endure so much stress, without constantly fighting for the support they rightly deserve.
We miss mum, every hour of every day, but hope that our fight with Continuing Healthcare may lead to lessons being learned and ensuring that in the future other vulnerable individuals are not treated the same way.