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My Mother's story was one of a health care and social care system that was totally incapable of meeting my Mother's needs. While part of the overall situation was greatly worsened by the COVID situation, both the care she received at home and in residential care revealed fundamental inadequacies of both those who should have been caring for my Mother, and a system that was fundamentally inadequate and simply, too often, did not meet my Mother's needs, whilst still being paid for this fundamental inadequacy. Both health and social care must radically change in the UK, we need adequate systems and trained people who actually provide what they are being paid to provide.

It is hard to know what to do to help and to think about the future.
It is hard when my dad creates his own logic that is completely illogical.
It is hard to not become frustrated at the rumination of thoughts that my dad experiences.
It is hard when he only wants to eat boiled potatoes instead of the meal I have cooked him.
It is hard to not share any caring responsibility with my brothers because I am the daughter.
It is hard to be a wife, mother, doctor and carer.
It is just hard and I know it will get harder.

My mum has been living with dementia for the last 3 years.Last year her husband of 40 years,my stepdad walk out on her he was embarrassed with her forgetfulness.Dementia destroys familys

My late husband Roy had Parkinson's and Lewy Body dementia. Whilst he only had Parkinson's we had all sorts of NHS help; once dementia set in, we were thrown to the 'mercies' of Social Services.
There was absolutely no practical help; some well meaning people but no expertise or experience. 24/7/365 caring for 7 years was exhausting and toxic, sadly when my once much loved husband died at home all I felt was relief.
There was no respite apart from self funded care at £1500.00pw, on a carers allowance of £60pw .
I lost 10 salaried yrs of my 44 year teaching career and related pension contributions. Financial impact huge, emotional impact unquantifiable.
There was a plethora of advice but no practical help; it was like drowning in the middle of a lake with someone standing on the edge issuing instructions on how to swim.
The upside to the lack of NHS help meant that Roy died quietly and peacefully at home. Whilst Dementia is classified as a Condition rather than an illness there can be no serious help. Interestingly my husband's Death Certificate states: Cause of Death Dementia.

My mum was diagnosed with onset dementia last year but still realised at times she us forgetting things, she has good days and bad. But now we think my father has it my sister is arranging an analysis test for it but doesn’t know about this yet. So the future looks like having to look after snd care for both but in my eyes they’ll both end up having to go into a home. This illness really needs raising awareness of snd more research somethings got to be found to help people with it !

Mummy was my first role model. Not a prima-donna, but quietly kind with a quirky sense of humour, or shy but dry as my father described her. She was fiercely loyal, and always true to herself and others. She developed Parkinson’s and then Alzheimer’s after she retired from teaching, and died in 2019 from double pneumonia and complications connected to her Parkinson’s and Alzheimer’s sufferings.

My reality of dementia is that it is a condition that pays no heed to how hard you worked, how much you used your brain, or how you lived your life. I learnt that it is impossible to predict, and that each time I thought I had adapted to what was happening, there would be a new change. I needed to learn new skills and to think differently. I learnt how to guide mummy through the unexplainable action of how to get into the car, I needed to talk when I didn’t want to talk, I adapted to a new daughter mother relationship, and I missed our old relationship so much, crying every time after I had visited mummy.

But also, one other thing that I really want to share, something else that I learnt that I wish people knew. I celebrated special moments - and these special moments were different to what had come before. They included a time Mummy phoned me after many months of her not being able to manage the phone (it turned out to be the last time), when she enjoyed a meal I had cooked, and when she smiled when I told her how proud I was of her one of the last times I visited her in hospital. And now she is gone, I am desperately pleased that I was able to see those moments as special moments. I miss her every day.