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Both my Grandparents suffered with dementia one with Alzheimer’s and one with vascular dementia. My Grandad went first. My Nan struggled so much and kept him home as long as possible until it was suggested he went into hospital for his medication to be assessed. Scared and confused my Grandad tried to escape and was sectioned under the mental health act and we could not get him out of hospital. He was dead within weeks, incontinent and being sedated as he was a “problem” he died of pneumonia in the end and it broke me completely as I wouldn’t treat my dog the way he was treated in hospital. My Nan she was my life. I helped her with all her documentation and she created a care plan before it was too late. Her wish was to stay home and we paid privately for 24/7 home care which cost over £70k she remained at home until her last breath but the pain and suffering from not knowing where she was and the battles with care providers and social services broke us as a family who also provided care for her 7 days a week on a rota basis. My Mum has now started to become very forgetful and I am struggling to muster the energy to start all over again. It’s been an intense few years and the battle is real. Carers are unsung heroes and the help and support out there is very limited and it’s certainly a bumpy road for all those involved. I do think often how animals have the option for a dignified end to life if they are diagnosed with a terminal illness but humans suffer horrendously.

Our story starts in 2012 in Church Stretton where me and my wife Elin, had been living since 2007 after a lifetime living and working in Africa and Asia in agricultural and rural development. During 2013 and 2014 Elin showed the first signs of dementia and had two surveys carried out by the Team from South Shropshire. As her memory declined further we decided to move back, in 2018, to York where one of our sons lives. As her behaviour became more and more unmanageable for me , we moved her to Meadowbeck Care Home ( run by Barchester) in York where she settled in well and was well cared for. I visited on a daily basis . She had a fall in December 2020 and broke a femur. She was operated on in hospital and discharged quickly. When she returned to the Home she deteriorated rapidly and passed away on Jan7th 2021.
As a home carer for several years, I appreciated the help that I received from Local Authorities and friends , but I felt that I could have been more involved in diagnosis and decision-making about my wife's future care.

I felt from the moment I recognised changes within Steve decided straight away to go see our GP at an instant, the process and anxieties I felt and Steve from that day took its toll on me and a very worrying time for him, as at that stage he just knew in himself things were not quit right. So the appt at the GP took only 20mins ,then the waiting game the (referrals) it was very clear with all appointments that seemed to be 8-10 weeks in between times never getting a clear answer to all the written tests and talking seeing different people and still no answer from either of the teams, in all that time you try living as normal as you possibly can but knowing and seeing that Steve was ill then a phone call months later to ask did we want to go to an appointment or be told over the phone so months of all above to be told (Steve you have Alzheimer’s) and as I say again and again then your just sent on your way to cope with a disease that just progressively gets worse by the day.

My mum had been forgetting places, people, things and dates, getting worse at the end of 2012. We asked the doctors to test and it was finally carried out by a healthcare worker in May 2013, at home, with the additional help from an Age Concern representative. Mum was not determined as having Alzheimer’s, even though she was deemed to be ‘not herself’. Mum was getting more forgetful and confused. Skip to October 2013, Mum was tested again and we were told that it was ‘probably’ Alzheimer’s. This was confusing for us because it was as if no one wanted to be held accountable for the diagnosis.
The Memory Clinic staff came around a couple of weeks later to see Mum and we finally had the answers to why Mum was not quite Mum any more.
It allowed my dad, her husband, to think that he was not being silly and thinking that he was doing something wrong. We could now investigate what we could do ourselves and the support we can get from different organisations.
It would help if there is clearer information on how people with dementia can be supported both physically and emotionally. It is hard to find out what help is out there locally. We did not know about the community groups available and which groups can also help the people caring for the person with dementia.
It is unclear if the dementia person is to be supported by local authorities or is left to use private companies because of the threshold for financial assistance.
The loved ones become carers over time and they do not realise that they are not entitled to the benefits as carers. This can have a significant burden on their own health. They are now doing more chores taking over from the person with dementia. The chores become overwhelming because the carer relied on their partner to do their normal everyday tasks eg personal care, housework and financial paperwork.
Respite would help because the person with dementia can be cared for a period of time whilst their carers recharge.
With an earlier diagnosis, the person with dementia may have a different experience and not be as confused and scared if they are guided as to what is happening and what may happen in the future.

Our story started just before Covid 2019 when our mum was just 58 years old.
We noticed she was forgetting things at work & at home.
She had noticed it herself and was very good at covering it up at first!

When my sister & i tried to talk to her about it she was very defensive and became very withdrawn and lost all of her confidence!
We were on the nhs waiting list for so long these changes with her memory, planning & organisation had left her disabled with no Diagnosis!
This left her un employed and unable to claim benefits.
Her and her husband became very depressed and struggled to get by financially and emotionally.
We decided to pay privately to get a memory test only to be told after paying for the test that mum was too severely depressed to be tested thoroughly- so still no diagnosis!
This went on over 4 years! Until we eventually got an nhs diagnosis and only at this point could mum begin to come to terms with her diagnosis and we as a family could begin to support her the way she needed!
Earlier diagnosis would have helped us as a family to support her earlier!
She didn’t know or understand what was happening to her and we couldn’t answer her questions! We were all so scared!

We have written so many emails and made so many phone calls to get support!
I lost my job 😢
My sister had to change her job!
Mums husband still struggles with his mental health!

The stigma around the word Dementia is still so very damaging!

My sister and I have educated ourselves and have given up so much of our lives to look after mum the way she deserves to be cared for!

I really want to see changes and education is key!
My daughter and my grandson have learnt that mum is different and needs more help than she did before and they ask questions!
Society’s questions need to be addressed.
You can life well with dementia!
It’s ok if you get things wrong and it’s ok to ask questions!
I also really want to see more specialist services for young onset patients like my mum too! 💙 xxx
Thankyou to everyone who supports the Alzheimer’s Society 💙

My story is about my lovely mum Christine who died on October 31st from vascular dementia and Alzheimer’s.
We’d suspected mum was ill for a long time before she was diagnosed. I phoned her surgery countless times but was told without mums consent I couldn’t see her doctor and mum wouldn’t let me go and see her doctor with her.
Eventually I spoke to a wonderful receptionist who spoke to the doctor who agreed to come and see mum at home. This all happened in the midst of COVID.
The visit from the doctor was unsettling. It’s a very long story!
Mum was sent for a scan and that’s when we got the devastating news of her illness.
My sister, myself and our two boys took it in turns to see her daily but it was overwhelming as poor mum didn’t but did know that something was wrong.
Fast forward to a few months later, she fell and broke her ribs and we moved in with her to look after her, after 3 days she was taken into hospital.
At the hospital it became apparent she wouldn’t be able to go home. None of us had money, property or savings for private care.
Mum was then moved to a home without any discussion with us as a family. We’d never been to the home and mum had no idea it was happening. Because of COVID we weren’t allowed in her room. We could see her through a plastic partition or in the foyer or not at all if there was an outbreak. We had no idea what was happening with mum and there was hardly any information about the home online. Mum thought we’d abandoned her which I suppose we had. I will always feel so guilty about it.
Eventually last may she was so ill we insisted that they get an ambulance for her. I’d requested for a doctor to see her the week before who didn’t seem too bothered about her.
At the hospital they discovered she had a very serious kidney infection, a lower abdomen infection and she was severely dehydrated and constipated.
Whilst in the hospital we were told that the home weren’t taking mum back.
She remained in the hospital being moved from ward to ward till October . We made the decision that there was no point keep treating mum for infections etc as it was prolonging a life that was very obviously painful and distressing.
She was moved to a private care home for palliative care and died the following week.
We need clinics specifically for dementia/Alzheimer patients and for the families and carers of patients to be able to seek the advice and help they need to cope with these horrible illnesses plus early detection is essential .
I don’t want anyone to go through what we did , we didn’t know how to talk to mum about her illness and I wish she’d had more help.

My wonderful loving mum, who had an OBE for Services to Nursing, was troubled by her own memory. As her carer - she had cancer and I had the LPA for her medical needs - I tried to get a diagnosis from her GP. Even with my healthier levels of energy, it took over 12 months. Nothing seemed to make a difference to her GP practice of 40+ years.
Even after her diagnosis, the GP would call Mum about other things like Covid jabs, expecting her to remember the conversation. It took months for them to call me instead.
Mum was dreadfully sad about how uncaring they were.
When Cardiff City Council wrote to Mum about the Council Tax discount, the letter was headed “DUE TO YOUR SEVERE MENTAL ILLNESS….” She was very upset by that.
Awful that publicly funded organisations behave with such inhumanity.