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Good afternoon
I have a very long, complicated...
I do think that I have dementia , I have bad memory problems , words and phrases i don't say regular I can't remember, people I don't seee regular I am not able to...
My 86 year old husband showed signs of dementia about 14 years ago. He was referred to the Memory Clinic; he passed the simple test but had brain scans which revealed...
My husband has dementia. Where do I start? We have good days and bad days, but more bad these days. When I look at him I don't see the man I knew. I am losing him...
When talking to someone with dementia, about a death, we should use the words ‘death’ and ‘died’, not the various euphemisms, which may well be confusing for...
My husband was diagnosed with vascular dementia last November. He’d been acting oddly since mid 2019. His GP was aware I was struggling and was very helpful. My...
My dear wife Janet was diagnosed with moderate dementia a year a go at the age of 75.. Since then she has remained in excellent spirits with no noticeable deteriation...
My Grandmother and Mother both had dementia. My...
My mother was Iris, Graceful to the very end during...
My late mother lived with dementia for around ten...
My darling husband has Alzheimer’s - his Mother had...
PATRICK’S long-awaited diagnosis of Lewy Body dementia prompted a visit from the hospital’s Occupational Therapy team to carry out a home inspection.
For an...
Good afternoon
I have a very long, complicated story about dementia. It isn’t one solely about symptoms, diagnosis and care. It includes one important aspect - what happens when the legal process of Power of Attorney goes wrong?
My MIL showed signs of dementia in 2014, her 90th. I nevertheless tried my best to get her to a doctor and a formal diagnosis. It didn’t happen because the grey area of “mental capacity” came into play. The GP asked Mam if she would like to attend Memory Clinic. . Such is the stigma still about dementia, she refused and we were left to deal with matters.
I managed to convince her that she should get a POA sorted. In many ways I wish I had not, as the person chosen to hold the LPA for her financial affairs became a problem z
In a saga, which encompasses my battles with Social Services to establish Safeguarding; with the OPG to investigate and revoke the LPA. It saw a police “investigation”, which got nowhere.
I uncovered large amounts of expenditure, which didn’t benefit Mam; failings by police and medical professionals; poor care; property unaccounted for; and a changed will which had to be dealt with by Statutory Will.
A diagnosis in 2018 and a happy 18 months before Mam died in 2020. Then followed legal action to regain misappropriated money and apologies from the GP.
Mam was failed by everyone with a duty of care - except me.
I have a very long, complicated story about dementia. It isn’t one solely about symptoms, diagnosis and care. It includes one important aspect - what happens when the legal process of Power of Attorney goes wrong?
My MIL showed signs of dementia in 2014, her 90th. I nevertheless tried my best to get her to a doctor and a formal diagnosis. It didn’t happen because the grey area of “mental capacity” came into play. The GP asked Mam if she would like to attend Memory Clinic. . Such is the stigma still about dementia, she refused and we were left to deal with matters.
I managed to convince her that she should get a POA sorted. In many ways I wish I had not, as the person chosen to hold the LPA for her financial affairs became a problem z
In a saga, which encompasses my battles with Social Services to establish Safeguarding; with the OPG to investigate and revoke the LPA. It saw a police “investigation”, which got nowhere.
I uncovered large amounts of expenditure, which didn’t benefit Mam; failings by police and medical professionals; poor care; property unaccounted for; and a changed will which had to be dealt with by Statutory Will.
A diagnosis in 2018 and a happy 18 months before Mam died in 2020. Then followed legal action to regain misappropriated money and apologies from the GP.
Mam was failed by everyone with a duty of care - except me.
Jeannette
I do think that I have dementia , I have bad memory problems , words and phrases i don't say regular I can't remember, people I don't seee regular I am not able to identify them and remember their name , and places and items that I don't see and use I don't recognise , and I do sometimes do really feel depressed
JOHN
My 86 year old husband showed signs of dementia about 14 years ago. He was referred to the Memory Clinic; he passed the simple test but had brain scans which revealed change attributed to ageing. He was referred back to the GP; he had more simple tests as his memory got worse but he passed - he was a mathematician so I he tests were simple. Again he had a brain scan but referred back to the GP. Diagnosis was difficult. Eventually when the GP questioned him about medication he has to confess I had taken charge because he had taken two of the same drug cause the were different generic packaging! He was again referred to the Memory Clinic who gave him a more complex test. He couldn’t pass so was eventually diagnosed with Alzheimer’s. Apart from one visit from the Alzheimer’s Society we have managed alone until now. He is in the latter stages and I am his 24/7 carer. I am 82 and have Rheumatoid Arthritis. Apart from Alzheimer’s my husband has long term health problems too. He his disease has trapped us both. Having worked and saved until I was 70 to support us - my husband retired at 55 due to health problems we are prevented from claiming heating allowance because we both get private pensions. Life is hard I pay for carer help to wash and dress him.
PATRICIA
My husband has dementia. Where do I start? We have good days and bad days, but more bad these days. When I look at him I don't see the man I knew. I am losing him every day. The recent advert hits the reality of dementia. I keep losing a part of my husband each day. We are at the stage he knows at times he can't do things and that destroys me, to see the look in his eyes and the distress on his face when he realises he can't do a simple task. There is minimal support for people going through this, it's progressive. On the physical side I work so we have a home etc..buti worry daily is he okay, is he on the floor, has he eaten... but there is no support on that side, but mentally it destroys me everyday to see him suffering time and time again. I know I'm not the only one going through this xx
Sarah
When talking to someone with dementia, about a death, we should use the words ‘death’ and ‘died’, not the various euphemisms, which may well be confusing for them.
As a Carer to my husband, diagnosed with Lewy Body Dementia in 2021, I had to move him into Care in April 2022, when he completely lost the use of his legs. We were lucky that his care home had a dementia section, and a nursing home section, so he could be moved to the nursing area in October 2023, with minimal disturbance for him, and still see the same staff, and have familiar objects from home around him.
When he was ill and, nearly a year later, dying, because I had Power of Attorney I could specify that he should stay in the Home, and not be moved to hospital, where he would have been frightened, among strangers, and much less well cared-for.
So my advice is, plan ahead, if you are fortunate enough to be able to do so. It has given my family and me great comfort to know that my husband was lovingly cared-for, and he died peacefully, painlessly and surrounded by love from family and staff.
As a Carer to my husband, diagnosed with Lewy Body Dementia in 2021, I had to move him into Care in April 2022, when he completely lost the use of his legs. We were lucky that his care home had a dementia section, and a nursing home section, so he could be moved to the nursing area in October 2023, with minimal disturbance for him, and still see the same staff, and have familiar objects from home around him.
When he was ill and, nearly a year later, dying, because I had Power of Attorney I could specify that he should stay in the Home, and not be moved to hospital, where he would have been frightened, among strangers, and much less well cared-for.
So my advice is, plan ahead, if you are fortunate enough to be able to do so. It has given my family and me great comfort to know that my husband was lovingly cared-for, and he died peacefully, painlessly and surrounded by love from family and staff.
Jill
My husband was diagnosed with vascular dementia last November. He’d been acting oddly since mid 2019. His GP was aware I was struggling and was very helpful. My husband is in denial. He won’t accept the diagnosis. He was advised not to drive until he’d had a driving assessment. After 8 months delay he failed the assessment. Of course it was his GP’s fault. His annoyance was so bad I wrote to the surgery and requested he be allowed a change of GP. It was done instantly. My husband often has the glazed look upon his face. He looks very vulnerable whenever he is in a different environment.
When I was 24 my grandmother had dementia and I took care of her. We moved her into our family home because she needed constant care. I treated her like a 3rd child, ours were aged 3 and the baby 3 months.
My grandmother was very content and enjoyed being cherished.
It’s very different with my husband he is a very independent chap. I’ve noticed him staggering at times in the home. He doesn’t notice.
I’m timed each time I leave the house, it gets me down but I’ve learned to retain till receipts so he can check my story. He doesn’t understand what he’s looking out but he pretends he does.
It’s very sad. If I suggest he accompanies me, he always says no.
This is early stages. I know he will become far worse.
My fear is when he falls I’ll not be able to lift him.
He happily watches the news 24/7 or his other obsession is the music channels on TV…. Dreadful racket at times!!
I laugh with him to keep his spirits up.
When I was 24 my grandmother had dementia and I took care of her. We moved her into our family home because she needed constant care. I treated her like a 3rd child, ours were aged 3 and the baby 3 months.
My grandmother was very content and enjoyed being cherished.
It’s very different with my husband he is a very independent chap. I’ve noticed him staggering at times in the home. He doesn’t notice.
I’m timed each time I leave the house, it gets me down but I’ve learned to retain till receipts so he can check my story. He doesn’t understand what he’s looking out but he pretends he does.
It’s very sad. If I suggest he accompanies me, he always says no.
This is early stages. I know he will become far worse.
My fear is when he falls I’ll not be able to lift him.
He happily watches the news 24/7 or his other obsession is the music channels on TV…. Dreadful racket at times!!
I laugh with him to keep his spirits up.
Lesley
My dear wife Janet was diagnosed with moderate dementia a year a go at the age of 75.. Since then she has remained in excellent spirits with no noticeable deteriation since Christmas
I put this down to a combination of medicine, love and care and variety. I am a full time house husband now, and obviously restricted to what I can do. But I keep fit, have short breaks due to a helpful family. We go out regularly, and keep a good variety in what we do. I take things on a week by week basis without looking to far ahead. You never known in life how things may or may not develop. The message needs to get out there more that this is an awful disease and the Government particularly could do a lot more instead of wasting public money on useless projects and virtue signalling. This Government is frankly appalling.
I trust this is useful, you can make the best of any bad situation if you try! No pictures of you don't mind.
I put this down to a combination of medicine, love and care and variety. I am a full time house husband now, and obviously restricted to what I can do. But I keep fit, have short breaks due to a helpful family. We go out regularly, and keep a good variety in what we do. I take things on a week by week basis without looking to far ahead. You never known in life how things may or may not develop. The message needs to get out there more that this is an awful disease and the Government particularly could do a lot more instead of wasting public money on useless projects and virtue signalling. This Government is frankly appalling.
I trust this is useful, you can make the best of any bad situation if you try! No pictures of you don't mind.
Douglas
My Grandmother and Mother both had dementia. My own experience is that we are very much on our own with trying to establish the best care for our loved ones and at our own costs. Dementia sufferers don’t know they are ill - so what about all the people with no close or capable families to care for them. The cost of care is huge - the family home had to be sold to cover the costs, and the choice of suitable care homes were limited, There needs to be a standard of care for everyone - not what you can afford - it must be heartbreaking to have to compromise and feel you are letting them down. We were lucky and were able to place Mum in an excellent home - but we would have run out of money - what then? I wrote to my (then) MP who said they were working on the care home cost cap - but I know understand the new government has quietly shelved this. What happens now? She passed away after a year in the home - she didn’t know who me and my sisters were and had no knowledge of the world around her. The least we can do as humanity is wrap our arms around all sufferers and care for them.
Sally
My mother was Iris, Graceful to the very end during sentient moments where the dementia gave us a rare, poignant but cherished break from its grip as it slowly squeezed out every part of her personality and everything that made her who she was.
She worked over 16 years as a carer herself and was good at her job and sge delivered her care with respect, compassion & dignity, I was her boss briefly so can reliably attest to that fact... yet when her time came to receive that care from strangers her story was very very different!
I cared for her for almost 10 years more and more until it became 24/7 on the day the country locked down on 2020 and she was discharged from her most recent admission following a serious fall that again we didn't get to the bottom of because none if her falls/incidents were properly diagnosed or dealt with due to her having dementia. Dementia, a diagnosis they failed to give her or us as her family until she was far far along in the disease progression. They even took it upon themselves to complete a DNR order on her during that hospital admission without speaking to family and claiming my mother chose it and we know she wouldn't have done that.
I moved her all the way up to Somerset with me and cared for her and my disabled daughter together in my 2 bedroom flat. The care received there was brilliant from the GP surgery to the Intensive Dementia Service and its various professional attachments. They even helped us to get moved to a larger home to allow me to care for them more effectively and safely... but then it all started going wrong!
A catalogue of failures and lies starting with the new GP then other professional services contributed to her decline and her ultimately giving up on life because the way she was treated for the last 6 months of her life was neglectful, harrowing, stressful, because of the way she was treated differently without the full capacity to object or choose. This combined with not having power of attorney or any legal standing as a family due to their failures made it traumatic for us as a family but for me and my daughter it was a living nightmare that later contributed to me having a stroke at 48 years old.
So many things could have been done differently and my mother could have had a good life and a good death in the end if only the services provided were not discriminatory and lacking.
I make it my mission to help ease the suffering of strangers who will or are going through this journey and building blocks in the form of third sector services to bridge the gaps that make such a difference.
It's too late for us and our mother and nana but change is very much needed
She worked over 16 years as a carer herself and was good at her job and sge delivered her care with respect, compassion & dignity, I was her boss briefly so can reliably attest to that fact... yet when her time came to receive that care from strangers her story was very very different!
I cared for her for almost 10 years more and more until it became 24/7 on the day the country locked down on 2020 and she was discharged from her most recent admission following a serious fall that again we didn't get to the bottom of because none if her falls/incidents were properly diagnosed or dealt with due to her having dementia. Dementia, a diagnosis they failed to give her or us as her family until she was far far along in the disease progression. They even took it upon themselves to complete a DNR order on her during that hospital admission without speaking to family and claiming my mother chose it and we know she wouldn't have done that.
I moved her all the way up to Somerset with me and cared for her and my disabled daughter together in my 2 bedroom flat. The care received there was brilliant from the GP surgery to the Intensive Dementia Service and its various professional attachments. They even helped us to get moved to a larger home to allow me to care for them more effectively and safely... but then it all started going wrong!
A catalogue of failures and lies starting with the new GP then other professional services contributed to her decline and her ultimately giving up on life because the way she was treated for the last 6 months of her life was neglectful, harrowing, stressful, because of the way she was treated differently without the full capacity to object or choose. This combined with not having power of attorney or any legal standing as a family due to their failures made it traumatic for us as a family but for me and my daughter it was a living nightmare that later contributed to me having a stroke at 48 years old.
So many things could have been done differently and my mother could have had a good life and a good death in the end if only the services provided were not discriminatory and lacking.
I make it my mission to help ease the suffering of strangers who will or are going through this journey and building blocks in the form of third sector services to bridge the gaps that make such a difference.
It's too late for us and our mother and nana but change is very much needed
Rosina
My late mother lived with dementia for around ten years. Apart from the final few weeks she was cared for at home by my father who was 93 when she died. She had always cooked, looked after the house and all their business and financial affairs so I had to teach my father how to take over these responsibilities. His saddest comment (after 60 years of marriage) was that Mum was no longer the person he married because her personality had changed so much. She continued to be able to read and write, beat me at rummy and solve crosswords and sudokus with encouragement. Her favourite comment to a particular TV advert was "confused.com, that's me!"
Gillian
My darling husband has Alzheimer’s - his Mother had Vascular dementia. I regard myself as a Dementia Warrior. Covid Lockdown hindered diagnosis. My GP was located in the LB Sutton but we live just over the Border in Surrey. Therefore after diagnosis we were abandoned to our own devices and I had to try to reach out for advice and support but of course it was all on line or via telephone. No face to face. Of course it culminated in a mental health crisis eventually. My darling husband had stopped any personal hygiene - and eating much of anything - no sleep. He just wrecked the house night after night. Broke furniture, emptied drawers / freezer - all the lights on, and TV. Curtains hanging off the rails etc. tried urinating in the freezer / oven. Finally went to the knife drawer when I tried once again to stop him smashing the TV. He thought the events on TV were real. The police came. And the paramedics once again. He was taken to hospital where he was restored to health after being admitted with delirium,, dehydration and malnutrition. It was horrifying. Because he refused to undress & he just wore layer upon layer, inc my clothes, I could not tell he was losing weight. . He had 6 weeks in hospital - sedated and has remained on maximum sedation ever since. For his own safety and that of his nurses and carers. He is in a care home - straight from hospital discharge. I was given no choice - I was told he could not come home again. I spent many sleepless nights when he was home but eventually, in order to get any rest at all, I was forced to totally barricade myself into the spare room overnight. Peeing in a waste paper bin in the early hours!! Everyone I meet when I am out about seems to have been touched by dementia. Their friends and/or family members. Our close friend and neighbour has just been admitted to Mike’s care home this month too. No-one should be left to cope alone like we were. It’s shocking. When I had asked my GP if I should register as Mike’s carer she just laughed at me! I thought I might perhaps get assistance? But no. Physically my sweetheart, of 60 years together, is well cared for - very frail - no mobility - but is diminishing mentally day by day. Luckily he is unaware of his situation & no longer recognises me nor our friends and family. But love conquers All! Thanks for listening.
Susan
PATRICK’S long-awaited diagnosis of Lewy Body dementia prompted a visit from the hospital’s Occupational Therapy team to carry out a home inspection.
For an hour they wandered disapprovingly around the house putting Patrick through his paces and tutting at our all-glass shower cabinet and our plasterboard hall walls, neither of which respectively, they declared, would support the weight of a flip-down shower seat or an additional hand rail.
But if these humble adjustments were not viable it became rapidly apparent that expense – my expense – was no object when it came to suggesting fantasy projects.
Have you thought about a new armchair? asked one, waving airily at Patrick who was sitting perfectly comfortably in his favourite not-at-all-old armchair.
Readers, I had not…
Had I considered where we might put a downstairs wet room, they wondered?
Or where Patrick would sleep when the stairs become too much for him?
For around only £30,000 I could knock down the dining room wall and convert the garage for his use…
And was I really sure he needed his sleeping pills?
The first two questions I had not yet given a great deal of thought to, but of the third I was absolutely certain: Patrick needed sleeping pills because otherwise he would be murdered one night by his sleep-deprived wife.
And I realised I had tactlessly said this out loud when a note was scribbled hastily on the clipboard questionnaire and I was given the sort of look which indicates, without the need for words, that I had Turned Out Disappointing…
For an hour they wandered disapprovingly around the house putting Patrick through his paces and tutting at our all-glass shower cabinet and our plasterboard hall walls, neither of which respectively, they declared, would support the weight of a flip-down shower seat or an additional hand rail.
But if these humble adjustments were not viable it became rapidly apparent that expense – my expense – was no object when it came to suggesting fantasy projects.
Have you thought about a new armchair? asked one, waving airily at Patrick who was sitting perfectly comfortably in his favourite not-at-all-old armchair.
Readers, I had not…
Had I considered where we might put a downstairs wet room, they wondered?
Or where Patrick would sleep when the stairs become too much for him?
For around only £30,000 I could knock down the dining room wall and convert the garage for his use…
And was I really sure he needed his sleeping pills?
The first two questions I had not yet given a great deal of thought to, but of the third I was absolutely certain: Patrick needed sleeping pills because otherwise he would be murdered one night by his sleep-deprived wife.
And I realised I had tactlessly said this out loud when a note was scribbled hastily on the clipboard questionnaire and I was given the sort of look which indicates, without the need for words, that I had Turned Out Disappointing…
Geraldine
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?