Dementia Support Line
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If you're ready to tell your story, we want your voice to be heard.
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
It will take society to beat dementia. We’ll take your stories to those who need to hear them most, to help make dementia the political priority it deserves to be.
YOU CANNOT POUR CARE FROM AN EMPTY CUP…
What this...
We realised my Mother had dementia aged 81 just...
My lovely, sensible, capable, calm mother developed vascular dementia when she was about 90 and got gradually worse till she died (of just about everything) aged 98....
Both parents with dementia. You grieve from the moment of diagnoses. My father died in July. Paying for his end of life with his own money was horrific.
He wasn't...
It’s ten years since my dad passed but I still find it hard to talk about his dementia story. I used to accompany him to his doctors appointments, when he was taking...
I was a clever boy at school, passed the 11+ exam in...
Well, I am on a new trajectory but it is strangely familiar.
My husband (73) has just been diagnosed with Alzheimer's and my mum died from Alzheimer's two years ago....
My husband was diagnosed in Jan 2022 with “ mild...
My dad was diagnosed with vascular dementia and my mum Alzheimer’s, both sadly passed away in 2017 and 2020. Now my sister has been diagnosed with both, so our...
My Husband 84 years old has Dementia ,and i am his carer
he also has other heath issues .
I just wish that the NHS would look at my husband as as a whole and...
HOPE AND PURPOSE… These are the two most cherished...
I realised my memory was getting worse & my GP arranged a memory clinic test where I was immediately referred to a specialist who,after a series of tests,diagnosed...
YOU CANNOT POUR CARE FROM AN EMPTY CUP…
What this actually means is the ones ‘Living’ with Dementia are the carers and loved ones helping those with the disease diagnosis on their journey…
When you travel on a plane with a child you are advised in an emergency to put your own mask on first, before you help the child… same thing applies with caring for anyone really. No one can be a carer if they need caring themselves? So, as my own capacities and worries fade further, due to my dementia, my wife’s worries and needs for support will grow! What does this tell the world about where the help should go…? Blessings, John
(This is a second submission but is just as important message).
What this actually means is the ones ‘Living’ with Dementia are the carers and loved ones helping those with the disease diagnosis on their journey…
When you travel on a plane with a child you are advised in an emergency to put your own mask on first, before you help the child… same thing applies with caring for anyone really. No one can be a carer if they need caring themselves? So, as my own capacities and worries fade further, due to my dementia, my wife’s worries and needs for support will grow! What does this tell the world about where the help should go…? Blessings, John
(This is a second submission but is just as important message).
JOHN
We realised my Mother had dementia aged 81 just after my father died. He had been masking it & not telling us of her peculiar behaviour apart from saying "you're Mother has gone
walkabout". We thought her half made bed & line of washing half full was because she'd had to help my father who'd had a stroke years before. But when the Undertaker asked for a deposit
she said "what's a cheque?". We knew then something was wrong. In all she had it 10yrs from that date before she died. She lived with my sister for 3yrs & was assessed & went once a week to a
day centre. Then getting up & dressing @3am & asking if anybody was there & following my sister everywhere & eating & drinking very odd mixtures, we had to make the heartbreaking
decision to put her in a home. She liked the first home but then fell & broke her hip so had to go into a nursing home where she was put in a wheelchair & hoisted everywhere & not encouraged to
walk which broke my heart . Eventually she stopped talking & I think they drugged her to stop her making a constant "ug ug" noise, which was anxiety & she then slept all the time. I tried visiting at all times of day & asked the home not to drug her, but to no avail. At the end I asked if they were doing the Liverpool pathway & they asked if I had Power of Attorney! She was prescribed painkillers by the doctor but they only gave her anti anxiety meds, although I begged them to administer painkillers. My mother was very strong, brave & stoic but when I saw she was wringing her hands I knew she was in pain! I cried at them that she was dying so please ease it for her, but the matron on duty was young & inexperienced & frightened of giving too much medication, so it took 3 days for her to die. I sat with her most if that time & it still haunts me. I miss her so much & although I questioned their actions with the home Manager, I got nowhere. I think there should be more regulations regarding the end of life for Dementia patients.
walkabout". We thought her half made bed & line of washing half full was because she'd had to help my father who'd had a stroke years before. But when the Undertaker asked for a deposit
she said "what's a cheque?". We knew then something was wrong. In all she had it 10yrs from that date before she died. She lived with my sister for 3yrs & was assessed & went once a week to a
day centre. Then getting up & dressing @3am & asking if anybody was there & following my sister everywhere & eating & drinking very odd mixtures, we had to make the heartbreaking
decision to put her in a home. She liked the first home but then fell & broke her hip so had to go into a nursing home where she was put in a wheelchair & hoisted everywhere & not encouraged to
walk which broke my heart . Eventually she stopped talking & I think they drugged her to stop her making a constant "ug ug" noise, which was anxiety & she then slept all the time. I tried visiting at all times of day & asked the home not to drug her, but to no avail. At the end I asked if they were doing the Liverpool pathway & they asked if I had Power of Attorney! She was prescribed painkillers by the doctor but they only gave her anti anxiety meds, although I begged them to administer painkillers. My mother was very strong, brave & stoic but when I saw she was wringing her hands I knew she was in pain! I cried at them that she was dying so please ease it for her, but the matron on duty was young & inexperienced & frightened of giving too much medication, so it took 3 days for her to die. I sat with her most if that time & it still haunts me. I miss her so much & although I questioned their actions with the home Manager, I got nowhere. I think there should be more regulations regarding the end of life for Dementia patients.
Helen
My lovely, sensible, capable, calm mother developed vascular dementia when she was about 90 and got gradually worse till she died (of just about everything) aged 98. My sister moved to live with her. Our father had died not long before. Although at times she was her lovely old self, she also could be extremely difficult and not too pleasant.. Though always know who we were and retained her left-leaning political outlook . And sense of humour. And, often, capacity for kindness. (and her memory was not up to much!)
Pam
Both parents with dementia. You grieve from the moment of diagnoses. My father died in July. Paying for his end of life with his own money was horrific.
He wasn't dying in line with a government process. One of my parents had a medical history that you would expect dementia the other no health issues. This disease can affect any of us. It's random. Power of Attorney is essential to have a say in your loved ones care. Also teach yourself about the financial aspect of it before it happens. Watching life savings being used on care has been heartbreaking. The care system still running the same as it did in the 1980s it needs a reform immediately. The government keeps pushing it back. I feel this is the case because my parents are the generation of savers with their own houses. I better leave it there because anger will come. Thanks for reading.
He wasn't dying in line with a government process. One of my parents had a medical history that you would expect dementia the other no health issues. This disease can affect any of us. It's random. Power of Attorney is essential to have a say in your loved ones care. Also teach yourself about the financial aspect of it before it happens. Watching life savings being used on care has been heartbreaking. The care system still running the same as it did in the 1980s it needs a reform immediately. The government keeps pushing it back. I feel this is the case because my parents are the generation of savers with their own houses. I better leave it there because anger will come. Thanks for reading.
Elle
It’s ten years since my dad passed but I still find it hard to talk about his dementia story. I used to accompany him to his doctors appointments, when he was taking his test for his memory,heartbreaking.Eventually Mum couldn’t care for him and he spent his last days in a care home.The carers on the most part were wonderful,.When visited Dad he was always was pleased to see us,he might not have realised I was his daughter but was always pleased to see me. Dad lived for two years in care home before he passed away in hospital.We had one final battle for Dad as the care home didn’t want him back.After having a few distressing conversations I had a phone call to say they would take him back.Too late he had died that morning.❤️
Mary Jane
I was a clever boy at school, passed the 11+ exam in 1960, went to a grammar school, then to Trinity at Cambridge (at the same time as King Charles)... postgraduate I was an officer in the RAF played "international" rugby for the UK Combined Services against the French armed forces, later was a World Champion at a sport I could do sitting down (advanced Aerobatics). Now I have what you call "dementia" but which I prefer to call "fullmentia", as I can still describe the path I took to walk to primary school aged 5 but hardly anything about what happened yesterday. Despite having successfuly flown aeroplanes upside down (in competition for Great Britain), I am no longer allowed to drive a car - which is crazy as the safety requirement is "situational awareness" not "memory". I am driven around by my devoted wife, and I work very hard not to point out all the potential dangers that I spot before she does. Having "dementia" doesn't mean I am incompetent, just that my memory storage capacity of recent matters is somewhat reduced. So that is how it appears to me today, tomorrow I won't remember what I have written so will probably repeat myself somewhat ;-)...
Alan
Well, I am on a new trajectory but it is strangely familiar.
My husband (73) has just been diagnosed with Alzheimer's and my mum died from Alzheimer's two years ago.
With my husband , we are at a stage where on some days he acknowledges he has a problem and others when he does not. I find the latter more challenging.
The speed at which my husband has become unwell has been staggering and this has been the hardest thing for all the family, to date, to deal with.
For now we are resigned to taking one day at a time and when life feels unfair and very tough, be comforted by the knowledge thst we have beautiful children and grandchildren, who make the tough days more bearable.
My husband (73) has just been diagnosed with Alzheimer's and my mum died from Alzheimer's two years ago.
With my husband , we are at a stage where on some days he acknowledges he has a problem and others when he does not. I find the latter more challenging.
The speed at which my husband has become unwell has been staggering and this has been the hardest thing for all the family, to date, to deal with.
For now we are resigned to taking one day at a time and when life feels unfair and very tough, be comforted by the knowledge thst we have beautiful children and grandchildren, who make the tough days more bearable.
Andrea
My husband was diagnosed in Jan 2022 with “ mild vascular dementia “ we were told he didn’t need any medication and there was no follow up. Fast forward to September 2023, my husbands memory declined rapidly, we then had a social worker who was useless, a CPN who was amazing and warned social services that we were heading towards a crisis point. By this time my husband had times when he didn’t know who I was. He had moments when he would be verbally aggressive towards me. On Nov 10 last year he was admitted into a care home, and my world fell apart. Four days later he was moved into another care home, because the first one was disgusting. A few months later he was seen by a different doctor who said he didn’t have vascular dementia he has lewybodies dementia with Alzheimer’s. Had he been diagnosed correctly in the first place and given the medication he is now on , I would have been able to keep him at home for longer, especially as we live in an extra care housing scheme with care staff on duty day and night. Something needs to be done about this as what happened to my husband not only turned my world upside down but also my husband’s and our daughters.
Carolyn
My dad was diagnosed with vascular dementia and my mum Alzheimer’s, both sadly passed away in 2017 and 2020. Now my sister has been diagnosed with both, so our family journey begins again.
Suzanne
My Husband 84 years old has Dementia ,and i am his carer
he also has other heath issues .
I just wish that the NHS would look at my husband as as a whole and treat him accordingly .
More joined up thinking about treatments need to be done .
Also more advocates for Dementia patients ,when trying to get the right help
he also has other heath issues .
I just wish that the NHS would look at my husband as as a whole and treat him accordingly .
More joined up thinking about treatments need to be done .
Also more advocates for Dementia patients ,when trying to get the right help
Georgie
HOPE AND PURPOSE… These are the two most cherished things that are lost when that diagnosis drops! BUT I DECIDED TO IGNORE this loss of purpose and get a NEW one? HOW? Well, I submitted myself for study, research and championing the cause to get awareness out there through Alzheimer’s Society, Facebook, and You-Tube. My granddaughter helps produce & guide my You-Tube videos nudging people to get that early diagnosis. (@minusmymemory if this can be included in the story)? So, yes it’s a bad thing, but it’s only the end if you simply do nothing but feel sorry for yourself and let it be the end! Blessings, John
JOHN
I realised my memory was getting worse & my GP arranged a memory clinic test where I was immediately referred to a specialist who,after a series of tests,diagnosed Alzheimer’s. Having been a member of Mensa for many years this worried me greatly.
2 years later I am still coming to terms with it. I fail to recognise people in the street,forget friends names & occasionally take a wrong turning when out in a small town I’ve lived in for 15 years. As a widower I live alone & worry about when my illness progresses & I cannot cope without support. I have adopted many coping strategies (eg:cooking is only on air fryer,microwave & toaster as they switch off if I forget them)but resent the limits to my lifestyle imposed by my illness.
2 years later I am still coming to terms with it. I fail to recognise people in the street,forget friends names & occasionally take a wrong turning when out in a small town I’ve lived in for 15 years. As a widower I live alone & worry about when my illness progresses & I cannot cope without support. I have adopted many coping strategies (eg:cooking is only on air fryer,microwave & toaster as they switch off if I forget them)but resent the limits to my lifestyle imposed by my illness.
David
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?