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My Grandpa had vascular dementia for 5 years before he died. It was heartbreaking seeing his quick deterioration, and equally hard seeing what it did to my Nana, his full time carer in her 80s. Because they lived together they had virtually no social care support and the toll it took on my Nana physically and mentally contributed hugely to her deteriorating health. Nobody seemed to care about them - we felt he was written off as he was likely to die soon anyway. We need people to feel heard and change to happen.

My mum was around 50 when she began suffering from chronic constipation, fatigue, aches and pains, light headedness, palpitations,anxiety, nausea, night terrors and what she described as a fuzzy head feeling of confusion.
Mum retired at 69 and became physically slower. Her posture began to hunch and she had a slight tremor on her right side, she had an irregular heart beat and was given a pacemaker. Eventually at 75 years old she was diagnosed with Parkinson’s and put on medication. In 2019 she began hallucinating which was so distressing for her and the family. My daughter was studying psychology and had recently learned about Lewy bodies dementia, I had never heard of this so I looked it up and discovered that Lewy body dementia is an umbrella term for two different types of dementia: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).
Lewy body dementia is a progressive, challenging condition, which is thought to be the cause for 10-15% of people with dementia.
The symptoms that I mentioned at the beginning were very likely symptoms of the Parkinson’s disease dementia.
Mum has visual and auditory hallucinations, problems with understanding, thinking, memory and judgement along with the physical stiffness and pain of Parkinson’s. But her memory is fine and she is aware of what is happening to her body and mind. She gets frustrated when she loses the words she wants to say mid sentence, she gets embarrassed when she soils herself, she gets angry when she can’t turn the handle of her bedroom door, It’s a cruel disease.

My mother, Maria was diagnosed with Alzheimers in 2021 but we saw signs and symptoms in 2017. We ignored it because refused to admit it and we all brushed it off as "oh she is getting old" but slowly yet quicker than we thought, it got progressively worst. It took a very long time to get a diagnose, back and forth with GP and with my mum (who refuses and is in denial still) to be seen. When we received the news, it shattered our world, our future plans and sadness clouded our family.

My mum who use to love english tea, working and meeting with her friends, was isolated completely because of this disease. Her personality and character changed and she is at times, unrecognisable. Like we are to her, we aren't her children, or her husband of 30 years.

We don't know what the future holds for her and for us all, we know one day we will have to put her in a care home, but until then, we are holding to the last threads of having her close with us and looking after her. We are thankful that there has been some help financially for my parents, but more needs to be done. The bills still need to be paid, food still needs to be brought and with this cost of living, it's closing in all of us.

I shared Maria's story on my personal social media.
https://www.tiktok.com/@neshie_xo/photo/7420041195260349728?is_from_webapp=1&sender_device=pc&web_id=7367361290052879905

Dementia has broken us as a family 💔 people on the outside who have never dealt with this know what goes on behind close doors and how much of a horrible disease this really is 💔 stealing families every 3 mins everyday our papa/dad/husband/friend is a well known loved man kind loving man 💔 please find a curer if you can find something for covid you can find something for dementia/alzheimers 💔
Wee as family know how the other families affected are feeling because we get nothing no help no nothing this illness is very hard 💔💔

My Gran passed away on May 22nd 2024, with family surrounding her. She had Alzheimer’s for around 11/12 years but had an official diagnosis in 2016. Her own mum had Alzheimer’s and her big sister had Vascular Dementia. People think Alzheimer’s is just ‘forgetting’ but it’s so much more. My Gran forgot recipes she had did for years, patterns she knitted her whole life and eventually lost who she was as a person. She forgot family members and became frightened at night time (sun downing).
She stayed in as she lost her confidence, forgot how to do her makeup and hair and all the little things that made her Irene.
Trying to get home help was awful and when we did get them they weren’t kind to my Granpa. My gran was so advanced by the time they were organised that some carers made comments of ‘we will we stop coming!’ Which caused my Granpa distress.
We felt forgotten by the care system and then had to pay £250 for a doctor to say she had Alzheimer’s so the care home could accept her placement. She moved into a care home on the 27th of Feb this year and was in there 12 weeks where she gained friends, sang and danced. The care she received was utterly amazing! The process to get the care was an uphill battle.
She never lost her nature sharing sweeties and hugging us tight.
I just wish she didn’t have to face her biggest fear.

I was first Diagnosed with Alzheimer’s Dementia July 2023 I was put on medication 5 mg of Donepezil to start and after 3 months up the dose to 10mg and then told that this Diagnosis could take between 5 / 10 / 15 years before i forget everybody. I’ve come to terms with this But the most important thing is I’m not going to beat it but I’m going to fight it all the way and by doing that I’m keeping active I’ve read a lot of stories some are more intense than others I can only do what my body and memory will allow me So look out body and memory there’s a lot more to come .I hope I haven’t been too abrupt with this but I think if you switch off you will Stagnate

Regards Kevin

My wife was diagnosed with Alzheimers disease 3 years ago at the age of 68. We both worked as teachers and hoped to spend the last 10 years enjoying our grandchildren and each other. Our planned future has radically changed. My wife has become a rapidly diminishing shadow of her former self. No one can appreciate the full scale of the loss. She never instigates conversation and now sleeps 18 hours a day. I take her to Singing for the Brain and she attends a day centre twice a week paid for out of our savings. Fortunately I have made some friends via these groups and we can go on short breaks in this country together where we can support each other. It’s very lonely although I think my wife is happy in her own world and never moans about her lot unlike me. I think it’s a savage disease unremitting in its relentless journey towards sapping the individual’s life force piece by piece. How the Government can keep putting social care for this disease on the back burner beats me. We promised to be together until death do us part but this is worse than death.