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My mum was a very clever lady but then she started to lose her memory, it took a long time to get a diagnosis I wish mental health had more resources. I realised my mum was a different person now and grieved for who she used to be. I was so lucky to be referred to social prescribing which I was completely unaware of, it opened many doors and introduced me to some amazing people, services and help, I wish I had known about this earlier in our journey. I feel so grateful that I am now volunteering with dementia UK with wonderful people in diversity and inclusion. As our population ages the help required will be greater and resources required will be spread thinly so more resources in this area are needed. My Nan and my Dad also have dementia and that’s just my close family. Navigating the journey is very hard and having support is essential. Mum is now in a home being cared for and I can spend quality time with her. I’m now navigating the financial aspects.

Its 13 years since my husband was diagnosed with Dementia. In those years I have lost my husband bit by bit, day by day. Everyday a little bit more of the person you love gets stolen until they are just a shell. It’s heartbreaking, grieving everyday for them. Its also exhausting, you lose yourself too. Today, my husband goes into a Care home. Another step down, the grief will never end.

I suffer from vascular dementia. I was diagnosed a few years ago it is now 2024, my life is so up and down with this disease. I have some really good days and then I pay for it for 2 days. The progression of the disease can get completely fast and quick. It's really hard for someone with this disease. because people around you really don't know what it's like, they try to understand and the care they give you, if you have a loving family around you, is amazing and it is so good for your self esteem. To be honest losing myself staying is in part the hardest for me. It creates an awful lot of depression and I definitely suffer from depression and I can cry for days on end. I love my family and as much as they try to understand me there's no way that they can. Unless you're the one going through this disease it is hard for anybody to put themselves in this position. we are slowly losing our minds and trying to keep a hold of that is so difficult because the more you try to hold, on the harder it is to hold on. Even trying to tell my story is difficult because the words don't come very easy thank goodness for Google. I also lose my train of thought all the time it's hard for me to even talk to my therapist because I'm all over the place I start telling one story and then it turns into a whole nother story and I don't know what I was trying to say in the first place. There are times I don't recognize my family I really don't know who they are like I've never met them before I have lost myself in my house often I have lost myself trying to get to a bathroom in my own home. How do we deal with the fact that we know we have just wet ourselves because we're lost I can't get in a car and go down the road and make a turn where I'm not lost and that is so scary. I have sundowners which is hard because I know what is coming going towards the end of the day. For those of you who take care of people like me just try to be patient kind understanding and never say wow I forget things all the time too, we know you do but not like us when we forget things we actually forget them because that's what we are we forget all kinds of things. Having to listen to well I forget things too is demeaning to me because you don't understand when I forget things they could actually really be gone out of my mind for good or at least we're very long time. No matter what dementia we suffer from it's hard as heck people and I'm about to lose where I'm at so I'm going to stop right now thank you for letting me tell my story.

After losing my dad to glioblastoma brain tumour terminal cancer in the pandemic 30th Jan 2021,from that day I began caring for mom finally got her diagnosed in Oct 2022 by the memory clinic brain scan and GP none of that process was easy.
Mom like others totally in denial she has mixed Alzheimers & vascular dementia, she could no longer drive ,she maintains she hit her head on a tree and thats why she is poorly, I have been her care giver for 3 & 1/2 she had been married for 52 year to dad. Moms short term memory is bad her balance & the falls, incontinence has been both at times,
I use disposible incontinence pants for her, moved her bed into the room near bathroom TV wardrob & comfortable high back chair, physio got me a pressure sore cushion for her & a bed bar I had already put grab bars in the house walking frame put signs where things are.I know the loneliness that other care givers feel our lives become 2nd to our loved one,it does put strains on our marriages & social life.
A hard part is the parent does not like the role reversal that the daughter tells the parent what to do.
cook, clean, do lawns, colour her hair, gel & do compression stocking, washing her, dressing her, pay bills,sort meds, but mom says she does all those things herself. Its PRIDE & not wanting to admit her diagnosis.

I kept my promise to Dad to look after mom his bungalow the finances and her health after he passed 30th January 2021 from terminal glioblastoma brain tumour I wish he was here their golden years of retirement didn't happen dad was a wonderful man broke my heart & to eventually lose both parents to their brains is a double blow & I worry if genetics will get me, & my husband he lost his mom to Alzheimers last year.
We are here #FORACURE we need
#CHC awarded all Dementia loved ones 2 years in from diagnosis.
They are terminal and yet they are expected to pay for what should be free care on the NHS they paid into the National Insurance scheme ALL THEIR WORKING LIVES so to me and many other families watching their savings estate rightful inheritence taken from them to pay for care in their home to help family members caring for their lived one with this horrific disease , the demise if Cognative and physical mobility.
I want the government to award #CHC to every loved one 2 years in from diagnosis, a small fully capped figure if the loved one has to go into a home,if become a danger to themselves, simply no longer live alone in their home.
I hope Keir Rachel Angela & Wes Streeting read all these family stories, ni more red tape poor assessors who have no clue about Dementia.
kind regards to everyone caring for or living with this terminal disease with no cure, even cancer has cures now.

I was in Hong Kong in 2017, approaching retirement. I had had difficulty reading for some years, but the ophthalmologists I consulted found nothing amiss. Any issues were put down to aging. However, my doctor suggested seeing a neurologist who checked my reading then arranged for some scans, which he sent to the US where it was determined that I had Posterior Cortical Atrophy, a rare, visual dementia almost unknown in HK. Amazing that he had nailed it, and in only a couple of weeks, when he had never come across PCA before.
I had also reached out to a surgeon friend in London hoping he might know of an appropriate specialist here. He introduced me to a consultant neuro ophthalmologist, who again told me there was nothing wrong with my eyes but advised me to consult another specialist, Dr Gordon Plant at UCLA. I did so when I was next in London and Dr Plant confirmed that it was indeed PCA.
My wife and I returned to the UK in mid 2020. Everything was disrupted by the Covid crisis, so it took us some time to register with the NHS where we now live. However, we did, and I was seen by a psychiatrist and neurologist locally. But PCA is one of the rare dementias. Not even all neurologists are familiar with the condition, and we seemed to be starting all over again. So, my wife contacted our GP and asked if I could be referred back. This was arranged, and in 2022, we went up to London to meet Professor Fox and his colleagues and signed on with him there.
I am now participating in a trial for a new Alzheimer’s drug and come to London on a regular basis to be assessed and receive either the placebo or the drug itself. I have also participated in current PCA specific research programmes there.

So, a number of fortunate contacts and referrals has led me to one of the global centres of expertise in PCA and I appreciate very much the help and support being provided by this centre of excellence.

Roger

yes 100% there is still not enough awareness about alzheimers and dementia

2024, that means it’s been 10 years since Granfie was diagnosed with Alzheimers.

Granfie is the most kind and caring person I know. He has always been there for me and my family, and I have so many fond memories of spending time with him.

But Alzheimer's disease has robbed him of his memories and his independence (now living full time in a care home).
It is a heartbreaking disease that affects not only the person with dementia, but also their loved ones.

Although Granfie is still here, this year he’s missed out witnessing we get engaged, buy my first home as there is just no understanding there anymore.

I just wish I could have one last conversation with him as there’s so much I want to talk to him about.

It feels like grieving twice losing him to the disease and then grieving all over again when his battle will be up.

From 2017 onwards, mum started to suffer fainting episodes. They were not that frequent, but mum would know she was about to pass out and would tell us so that we could help her.

NHS doctors and hospitals thought the fainting was to do with mums heart and referrals were made, which included fitting a device under her skin near her heart to monitor it. However, after many years of monitoring her heart was deemed healthy. At this point dementia was never considered.

During August 2021, mum was diagnosed with Lewy body dementia and one of the symptoms of this dementia is fainting.

We had to go private to get this diagnosis because the NHS was overworked with terrible wait times, and very poor performance with regard to diagnosis. Government needs to wake up to this appalling state of affairs and do something about it.

The private doctor prescribed various medications, however, over time mum became less mobile and eventually bed bound, unable to walk or stand.

My dad cared for my mum at home with the help of carers who came in three times a day. Dad was amazing.

Very little central or local government assistance was available, despite both parents paying into the system for over 60 years.

During the last year of mums life she spent many short stays in an NHS hospital. Mum could not walk or stand, but one night she managed to get out of the hospital bed and she fell. Her face looked like she had been severely beaten up and she had a large haematoma on her forehead. Mum lost her front teeth too. The night we left mum prior to the fall she was very restless and the nurses were made aware of this. A member of the family wanted to stay with mum that night but the nurses would not allow this. Days prior to the fall we asked for an assessment to be done (DoLS) but this wasn’t actioned. The problem here was lack of staff, overworked staff and the hospitals absolute inability to safeguard effectively.

Lewy body dementia gave mum horrible hallucinations (fire, flooding, flies smothering her food to name a few) and in the end mum couldn’t swallow. Mum always knew who we were though, the dementia didn’t affect that.

Mum was a very homely person and was wonderful in every way, so kind, loving and giving. Mum is so incredibly missed.
Mum passed away on 19 December 2022.
Love you Mum ❤️❤️Brenda ❤️❤️