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Both my parents had Alzheimer’s and vascular dementia. Mum was diagnosed at aged 87 in mid 2022, Dad at aged 88 in early 2023. At that time they were living independently in a large house, refusing any paid help other than a weekly cleaner. Neither was seen by a GP in relation to or following the diagnosis. Our only contact was with the practice nurse who gave them a booklet on being diagnosed with dementia which they didn’t look at because they denied having the disease.
My sister and I visited regularly, leaving in tears every time because life was becoming chaotic for them. I could write pages on what life has been like for the past two years for my parents, my sister and I as their cognition and physical health declined.

Practically, after a crisis involving a fall and five weeks in hospital for mum coinciding with an episode of confusion and hallucination for dad, we moved them into a rented apartment in a supported living complex for the elderly. . After a few months it became clear that even with cleaning and laundry done for them, a daily hot meal provided, and twice daily care visits, this was not sustainable or safe. So once the six month lease was up they moved together into a wonderful care home, dying within a month of each other 11 months later.

The financial cost of their care during this 18 month period was around £180,000, funded from the sale of their home. We claimed Attendance Allowance for them both but this is a drop in the ocean when it comes to care costs.

The emotional cost and stress on my sister and I have been unquantifiable. She is on anti -depressants and I felt broken. We were lucky to have supportive partners, to live close enough to our parents to visit often, and with the financial resources in their house to cover the costs of care. How others manage I cannot imagine.

We received zero support from the state in terms of advice or practical help. I read everything I could find, talked to friends who have been down the same path, and was lucky enough to access support from a British Legion Admiral nurse through Dad’s national service. In our experience, with a dementia diagnosis, the sufferers and their families are on their own.

I am in my mid 60’s and am determined that my children will not go through with me what I went through with my parents. I am following all the advice out there to age healthily, and will plan to ensure I live somewhere appropriate to my needs as I age. I have the financial resources to make this happen but am very conscious that so many others don’t. This country needs a holistic strategy on dementia prevention and care but I am not holding my breath.

My husband was diagnosed with Alzheimer’s in July 2022 at a Memory Clinic, they prescribed Donepzil but there were no follow-up appointments or any help or advice offered other than a booklet. After asking for a review appointment 18 months later at the GP surgery I was referred to a Carers charity. The GP surgery only seem to offer help with medical conditions. I have, through my own resources found the Admiral Nurses, they have offered advice and places to contact for care (which we will have to pay for).
The impact on our retirement so early on has been devastating, we are not able to travel or enjoy cinema, theatre or museum visits or recently even going for long walks. My husband recently had a very bad seizure, which was very frightening, it would have been good to be aware this might happen.
I wish the Government took an interest in the all encompassing stress for both the individual and carer of people with dementia, it feels like such a lonely journey with no support or physical help.

AD creeps up slowly. I think I didn’t want to see it myself for quite a while but think I knew .
As a wife I could only deal with it slowly.
I use to feel a panic inside when he did things that were odd but brushed it off as “just one of those days - we are both getting older? However my husband is 10 yrs my senior and now we know ( even though he forgets we have been told)
I try to take each day at a time and say yes to as many things as we can!
You get to know who can deal with it better in your friendships and be supportive and interested in you both still.
We belong to a supportive church - as we have been for all our married life and all are supportive plus some very close to us - this helps me so much..

My name is Kim, I have been looking after my father who was diagnosed with Alzheimer’s disease two years ago.
It is so heartbreaking to see, the person you once knew, turn into a person you no longer recognise. It’s very true what they say, you lose the person twice! We have to stay strong and never take anything they say to heart, it isn’t them anymore.

I have ‘lost ‘ two of the people closest to me in my life, my husband and my mother who are both currently disappearing before my very eyes .
The two people I turned to for advice or help , now need me to help them and take big decisions that I would give anything to be able to ask their opinions on
It’s often lonely , worrying and hard , wondering how on earth I can find what is needed inside me to keep going
It’s the worst thing we’ve had to face as a family and I wouldn’t wish it on my worst enemy

My husband Colin has frontal lobe Dementia he was diagnosed 5yrs ago this affects initiative emotion mainly & you wouldn't know he was affected straight away .he was always doing jobs around house could mend anything or adapt it for use ,this coupled with multiple hip replacements has made his life extremely isolated & limited. Its the most devastating illness I have worked in care but it's so life changing & heartbreaking to see that has no timescale that's the worst aspect .This living bereavement is like walking in the dark as Colins thinking problem solving abilitys are still there but not in action at all .This 5yrs has been the most difficult of our lives because the future is NOW but quality of life very limited ,I know compared to some wer more fortunate but the affect on Colin & i his wife & carer isn't possible to describe the depth of grief beyond anything you can imagine .There are so many suffering people in the country & world who will need a cure & unless you are financially secure even more devastating as there's little respite care unless you are wealthy to be had regularly enough .There are some wonderful people & volunteers who run 1 memory cafe in our area it's amazing but we need much ,more support locally .The future will be a major problem without major changes to our social care .its a lonely experience of which everyone knows something about but living it is a journey of undefinable loss & tragedy ,Living with Dementia no words can describe it must be a priority urgently but will take a lot of time carers familys suffer tremendously as well as person affected .Governments please LiSTEN URGENTLY