We can’t cure dementia yet. But the Government can cure the care system.
Behind every signature there's a story, share yours to show the impact of the broken care system on everyday lives across the UK, and what you want to see changed.
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I Love You
My beautiful ☺️ Mother Philomena Elizabeth Otoole is still held against her will at the Forest Court Nursing Home Calmore in Southampton Hampshire by the Hampshire County Council social services Shelley Lawrence & the Manager of the home Mr Chris Savage !My younger sibling also had cohersed my mother into signing the POA ( power of attorney) so she could have full power over my mothers finances and her home.
My mother has a voice and mental capacity and wants to
to be home in Derby with us xxx
My Lovely husband so let down by the system
My 80 year old husband has had dementia for the last 10 years and at 72 I am his carer. He has deteriorated in the past 12 months, both physically and mentally. I rarely get a nights sleep and if I am not in the room with him during the day, he calls my name constantly. He has no short term memory, is partially sighted and deaf. I have
worked all my life, and I should be able to enjoy my retirement, but everything revolves around John. Care homes are expensive, so I have to manage.
My mother will be 99 on 13th July 2021 - she has had memory problems soon after she turned 90 and was diagnosed with Alzheimer's in 2016. Up until now, my sister, Dad and I have enabled her to continue living in her own home up and she nor we want her to go into a home. However, since my Dad died in 2019 we take it in turns to stay with her (including overnight) but it is starting to put a strain on us being constantly responsible for her care.
My best friend and the best father anyone could have asked for, died in a care home in April 2020 after years of fighting the system which almost tore our family apart. A year on from his passing and the family are not yet free of the system as we still try to work our way through it to finalise his affairs. The lack of support and understanding was staggering, and the stress it caused irreversible. We must continue to fight for a fairer, better system for all.
Our world was torn apart when you were diagnosed at 57 with Alzheimer's-you still make me laugh every day, so sad to see you gradually fading away in front of me. But I know you feel very strongly that early diagnosis is key in younger people, as many are mis -diagnosed with stress anxiety & depression, when in fact, like you, it was the early signs of Dementia. Being younger you still have financial commitments, applying for (PIP) took 18 mths & a tribunal to judge-very cruel as is Alzheimer's!
my mum is living with dementia and was living happily at home with support and weekday attendance at a day centre.
until sh had a bad fall and broke leg she has sinse been stook in the care system which is not very good,is in it for profit and very much is in the medical model of care not social model.
meaning the last 13 to 14 months has menat limit visting and a very much uncaring care system that keeps families apart leading to isolation and depression of both the residents and families
Over the last five years I have cared for my mum who we lost with heart failure two years ago, I have continued looking after my dad who was married to mum for 66 years, the lock down has made my life very bad because dad’s day centre closed so at the beginning of 2020 I had to make the decision to have Carer’s in . I still care for dad who lives in his own bungalow My life isn’t my life anymore.
Mum is 89 and has mixed dementia. She was discharged from hospital to a care home 3 years ago, the decision taken out of my hands. The funds from her house sale depleted & after a stressful assessment procedure her care is partly covered by the council. I am mum’s sole surviving child after both my brother & sister died 10/12 years ago. My mum has needed me for the last 14 months but she has been locked away. I doubt I will recover from the damage the prison like experience has caused.
It is Dementia Action Week in the United Kingdom.
What story do we tell ourselves and the world about dementia? Is it one of regression, loss, emptiness, distance, frustration and deep sadness. Is it one of being, presence, nurture, compassion, growth and inquiry. For me, it is a cocktail of it all.
Why do we chose to frame our dementia story in the way that we do? I suspect it is fear, love, care and not knowing. Do we frame in the memories (the stories) of the past or being in the present?
After accusations that my Aunt was being robbed by a family member I contacted her Doctors. She was diagnosed with dementia but left to take tablets which of course she didn't. I had to chase various services to get the help she so badly needs, to no avail. A couple of weeks ago she broke her hip. It is likely that she will be sent home again possibly with a care package in place, I hope not but no-one is listening to me. She was lucky this time - I am not sure she will be next time.
My husband has had many illnesses over the last 31 years - Aplastic Anaemia, a brain haemorrhage, epilepsy, Multiple Sclerosis (mobility, sight, bladder/bowel problems etc.) and MS Dementia; which he was showing signs of 9 years ago. We have sleepless nights and I care for him 24/7 and he requires instant, constant attention - the TV ad reports it well! I have osteoarthritis, carpal tunnel and cervical spondylosis in my neck & spine from all the lifting/pushing the wheelchair I reckon.
This is my dad Norman he has Lewy body dementia my mother has been caring for him with little support the winter lockdown took is toll on dad and he deteriorated but getting him assessed was a nightmare nobody would see him face to face it was a minefield of medication changes over the phone stressful and confusing for my mother dad had to be admitted to a dementia ward we have not seen him for over 4 weeks, caring for my dad without support has resulted in my mothers health deteriorating
My husband was 51 when diagnosed, fighting not only this disease but the system as well for adequate care and also help with benefits when I had to finish work was not only cruel in a time of need when we should have had support but it nearly finished me off physically and mentally . This needs to change
I was taken to hospital for no known reason leaving my wife, who had memory problems, which included not being able to operate the gas cooker. I was taken to hospital because my wife hit me and this was witnessed, on one occasion, by a 'carer' whom I have never seen since. I was put into a Metal Ward and the Nursing Staff couldn't see why and called me a 'gentleman'. But the Doctor was determined to find something. With the time in hospital and the lock-out that was about 18 months ago.
Dad, I miss you everyday. Losing you to dementia and then again in death has shattered us all. You are so loved and so missed. I love you always. Migs. Xx
My Grandad lived with Alzheimer's for over 16 years, through that time I saw how the disease impact every part of his quality of life. As a family we really struggled to keep him active and engaged, with very little available we often had to resort to kids toys and game. Out of this frustration I set up Relish to provide products design specifically to improve the wellbeing of people with dementia. There is so much more we need to do to make sure people with dementia can live their to the full.
Both of my beautiful grandmothers have suffered with dementia and Alzheimer’s for a number of years and it has taken a lot from both sides of my family. They are both the hearts and souls of both my mum and dads sides of the family but we have all pulled together to help give them the care they need. My wonderful aunties and uncles and both of my parents take amazing care of them both but not everyone is so fortunate and the care system needs fixing.
Mum died earlier this year after a six year battle with developing Vascular Dementia. Months on I am still emotionally and mentally shattered, physically weak. Dementia is seven days a week all week. The Care system is at best patchy, means tested in a very harsh way, the carer has to chase the system not be supported by it. Health professionals are either to busy to be effective or just do not get what Dementia means to the sufferer and their family Carers. My heart goes to those still caring
This is mum today, taken last week. The decline in 6 years is shocking and bitterly sad. Years of no adequate care and assessments. After over a year of Covid, this has now pushed mum to a shell of her former self. This disease affects millions - those affected are peoples family, loved ones. Mum's and dad's are not replaceable. Families are suffering every day and those affected by Alzheimer's, and Parkinson's, deserve much better.
Mum has Dementia, dad has Parkinson's (how cruel and so undeserved). Mum has had failed discharges, sent home deemed as mobile, when she had been in hospital after many falls. Dad not coping, not sleeping, he's struggling so much. Finally carers are visiting twice a day now (Rapid Response). This disease is the cruellest in the world. It's breaking my heart every day. This is an illness like any other. Do something, GOVERNMENT!
My dad was diagnosed with early onset dementia 9 years ago at the age of 57. Following his diagnosis, we witnessed him slowly lose his independence, personality, struggle to complete basic tasks & heartbreakingly lose his life memories and more recently forget his loved ones.
This devastating and cruel disease is misunderstood and shouldn’t purely be associated with old age. The support dementia sufferers and their families get to navigate the social care system needs an overhaul.
We are two years in to learning how to live with Alzheimer’s as it progresses. It’s already difficult and our relationship fractious - how will we cope as his needs increase? I know the health and social care system doesn’t have the capacity to provide the support we’ll both need and the government doesn’t have the will to make this possible. Why after 50 years of happiness together do we have to face the awful prospect of being worn down until death finally releases him?
I have emailed my mp Lisa nandy
My mum was diagnosed with alzheimers 3 years ago. From then on, the level of support and care provided by the NHS and social services has been appalling. At the time of diagnosis, the Dr said "I'm sorry to say you have alzheimers". That was it. He referred her case to the GP. The GP made no contact. My mums disease is advancing, rapidly. The mental health trust and GP don't speak. Officially. It's a battle. It really shouldn't be this hard. My mum is still a person, they seem to forget this...
My dad had Parkinsons, not dementia, but we experienced the same broken system as people affected by dementia. He was diagnosed age 60 and didn't make it to his 70th. For 10 years my mum, brother and I fought to get support where none was forthcoming; challenged (and eventually overturned CHC funding decisions for more than £30k of care costs); and overcome our horror at a system that was the polar opposite of person-centred and contributed more to his decline than his independence.
My mom was first diagnosed with MCI back in 2018 and then in mid March was diagnosed with Alzheimer's Disease. Mom has rapidly declined during lockdown, and also during this time has not yet seen a doctor face to face. This has also meant as a family we have not been able to leverage any support face to face and been floundering in the dark. I appreciate that things have been challenging during the COVID-19 pandemic however issues like this seem to have been forgotten a long the way.
I want the person with dementia to be treated with dignity, as a valuable human being suffering from a terrible medical condition. I want that person to be able to reach their full potential at each stage of their illness, and have their emotional, intellectual and wellbeing needs recognised and met. This is is issue which will affect all of us (either as people who will live with dementia, or as supporting a loved one with dementia), so why don't we "wake up and smell the coffee".
You are my life I’m sorry I’m not the man you married and I know I don’t say it enough but I do love you 😍
The system needs fixed! Our father is in care and my mother passed away suddenly with the stress of watching him suffer. We now stand to lose the family home to cover his care homes costs. We are a family grieving for both our parents and the system wants to rob us of our family home at the same time! People with other illnesses are not treated this way, this has to stop. This is trauma on families and should be against human rights to do this on any family after a lifetime of paying taxes.
Our beloved Dad had severe dementia for the last ten years of his life. For his last three years he was cared for in a specialist unit of a care home. He had two Multi Discipline Team assessments for CHC, both MDTs assessed Dad as being eligible for CHC. The local panel of the CCG overturned the MDTs recommendations, saying to quote "His demonstrated needs are of a standard dementia care nature" therefore Dad was not eligible for CHC. It is a national scandal that CCGs can act illegally.
I'm currently battling to get my mum CHC funding. She did have NHS fully funded care but when she started to DECLINE they took the funding away as it was deemed she was more compliant as the disease had gotten worse. The fact sufferers or families have to sort out paying for care is disgusting and when the level of care isn't even that great its even more depressing this must change. We as a society must fix this.
I have Vascular Dementia and feel that we need to get the Alzheimers out on the public domain
The UKs long term care system is a disgrace and the worst best kept secret that comes to bite you at your time of need.
We as a family like so many others have experienced poor
care for loved ones with dementia within care homes . This needs to stop the government must make changes to the care system for the elderly .
A spotlight needs shining on the dysfunctional and failing NHS Continuing Healthcare process. Thousands of individuals are being incorrectly assessed as ‘social needs’ and those in a position to challenge this are failing to do so. Enough is enough. Support the campaign for a Judicial Review into this scandal - https://www.crowdjustice.com/case/the-nhs-continuing-healthcare-scandal/
M.R.S.A. Sepsis, Dementia, Diabetes Type 2, Pacemaker, Pneumonia, Bedsores 1-4, Odema, Ischaemic heart disease.
The photograph was taken in a hospital without permission.
Found to be bleeding from the back passage, and deaf,
Conveyed to a local hospital whilst in this hospital had a bout of Pneumonia, and treated for bed sores, hospital medical notes not given out. Transferred to a Residential care home, not given a diet for Diabetes type 2. Found with stomach pain from Sepsis.
My mum is now at end of life Alzheimer’s. She is a living skeleton, a zombie. Her needs are deemed only to be of a social need. Every single aspect of her life, apart from her own breathing, has to be done for her.
She kicks her legs over her bed rails, and grinds her teeth, but that is judged as keeping herself active!
Her CHC was withdrawn when she became totally bed bound, as she’s easy to manage and is predictable.
My mum is paying for her own death.
Shame on them!
My Mum struggled with dementia for many years, finally end up in a nursing home needing help and care for even the simplest of things. She could not be left alone for a moment. Why is this not considered a medical condition to be funded by the NHS is beyond me.
Securing CHC funding when you have dementia is like trying to get blood from a stone. But dementia is an illness and should be treated as such. Taking the life savings from society’s most vulnerable is simply wrong.
The CHC system is utterly corrupt. At a time most people need help this is what loved ones are faced with. It is simply not fit for purpose and the CCG and LA that do these meetings need to hide their face in shame. God help anybody that needs help with Dementia/Alzheimer’s the most dreadful of illnesses and yet classed as social care, it’s discrimination
Mum had vascular dementia and had been in a care home for several years. In late 2015 she became unable to load bear and was deemed to be nursing care but no bed was available that was suitable so stayed in the unit that was really great with her. She unfortunately was admitted to hospital in the September in 2016. I fought and failed to get funding for that last 9 months taking it to NHS England but failed Mum met the criteria with enough severes etc but as it was ‘ just’ dementia it was a no!
When mum was diagnosed with mixed dementia it was devastating enough to process. Worse was to come when we started the journey for CHC funding. The care homes in the Exeter either turned mum down because of her unpredictable and sometimes violent behaviour. Or they were simply not fit for purpose. We are in a legal battle to get justice. The Ccg also capped her funding. I'm surprised this charity is not backing Philip Mathius's fight for a judicial review.
A flawed CHC assessment for my Dad, with advanced dementia, progressive aphasia & behavioural issues, denied funding. The system stinks. When a health professional is selective in the evidence used, & lies, there is something very broken. Many thousands are unlawfully denied the funding they are entitled to & why we need to support Ret’d Rear Admiral Mathias’ campaign to fix the #nhschcscandal https://www.crowdjustice.com/case/the-nhs-continuing-healthcare-scandal/
My mother has been failed time and time again by our broken, risk-averse, profit-driven, one-size-fits-all, identity-destroying, rights-denying, dignity-destroying care system. The system requires more than token reform; it needs root and branch radical transformation.
I am lucky to have not had a loved one with any kind of dementia. But I was a private home carer and care officer for many years. During this time I worked alongside the social care system and the NHS. I have seen amazing care from these teams but I have also seen unsatisfactory care. We must make this a priority in our health care system.
The social care system in UK is one of the most shocking and disfunctional ones I know. As an ex care assistant, family member of person with dementia and someone who is professionally specialising in care sector issues, I feel extremely passionate about this subject. Through the years (since 2010) I've observed steady decline in standards, level of recruitment and lack of clear and robust plan how to improve the situation.
This is for my mum who through no fault of her own has Alzheimer’s dementia. She needs 24 hour care. I thought the NHS were supposed to care for you from cradle to grave but it seems the NHS does not class dementia (& the associated health problems) as their responsibility. The NHS CHC funding process is a disgrace and discriminatory. The Alzheimer’s Society need to get right behind Philip Mathias’s judicial review campaign. CHC funding is at the root of all the problems in the system.
My mum had Lewy Body Dementia and was severely mentally & physically disabled. She died on her own in a care home 6 weeks after contracting Covid. She paid nearly £850pw from the proceeds of her property for healthcare that should have been paid for by the NHS. I am still having to trawl through all mum’s health notes to appeal their unlawful refusal of this funding. There is no time to grieve. This task is too difficult for one person but it is what mum would have wanted me to do and I will
About 9years ago my late husband was Diagnose with Alzheimer’s Lewy body and myeloma cancer he was on chemo ok until 2019 he went blind too
He also had Parkinson’s and heart and skin problems by 2020 he couldn’t walk or communicate, incontinent and urine problems
He finally went in a nursing care home but it was bad language barrier I could see he was Agitated Depressedand angrywe try to get CHC for his care but No
We managed to get him to a different home but 4 weeks later he passed away
I do not understand why the Alzheimer's Society is not supporting the Judicial Review, led by Rear Admiral Mathias, into the unlawful denial of CHC to many desperate, vulnerable, frail people who should be entitled to NHS care. This should be your priority; there have been numerous petitions but the only way this system is going to be cured is through the Courts. Therefore, I suggest you throw your weight behind the campaign for the Judicial Review. If not, why not?
Both parents with advanced dementia have been in care homes for a number of years, self-funding. The situation is distressing enough, but applying for NHS Continuing Healthcare (CHC) has added to the trauma. CHC is the most disgraceful and dysfunctional system, unlawfully denying the healthcare funding they are eligible for. When you need 24x7 care because of your illness, unable to do anything for yourself, to suggest that those needs are social care is ludicrous.
I work with people who have received a diagnoses of dementia. Unfortunately my wife has just received a diagnoses of dementia, therefore as a nurse I am fully aware of what the future holds. Like the majority of homes it remains understaffed resulting in the care residents receive as adequate. The Government needs to provide proper funding for people diagnosed with dementia but with no voice the Government continues to ignore these people and fails to properly fund support groups
My husband was diagnosed with early onset fronto temporal dementia in 2018. He was let go from work in 2019 and I am his only care giver. We have no family around to help out. I see him losing more words and recognition of people each day. I'm scared of when he says I pick on him all the time. It`s so difficult since the lock down has happened. I feel so alone. I sometimes hope we both die from covid.
People with dementia and their families need a better deal from the Government to many with their families need help.
I have been living and caring for mum in family home. She going into advanced dementia stage and needs 24/7 care now. Currently being assessed in local care home. Yes, mum's care is number one priority but will have to sell house to fund mum's care and I will become homeless having been living on carers allowance. That's ok, I will survive, but seems unfair mum and dad worked hard all their lives only for the government to take their money for end of life care.
I was diagnosed at the age of 54. The Dementia world is a very lonely one! You have to find your own way. Support! What Support! Everything is a constant battle. Help, Benefits, Entitlements, Care!
Please...Just take a step back...if this was your mum, dad, even yourself! You would want the best care possible. Other terminal diseases have support and care, so why not Dementia! Is it because you think we don’t know!
That we will forget!
We still feel!
Because I failed in being able to care for my mother with Alzheimer’s she was sectioned and taken away from me. The government then tried to take the home I had lived in since birth (38 years), a home I had paid into since my father died in 2002 but I my name wasn’t on it. It wasn’t and isn’t fair. Cold and heartless letters sent to me all whilst losing my mother to this horrible disease.
The law needs changed.
Bring back dedicated NHS homes for people with all forms of dementia. The staff were fully trained how to look after and give care. None of the staff were afraid of what they may face each day, they just accepted each resident as an individual person with their own individual needs. Too much emphasis is placed on community care. There comes a time for the carer when they are no longer able to cope. They themselves will have age related problems restricting their ability to give personal care.
My mum has mixed dementia and fearful because she doesn't understand what is happening to her, whilst my dad is at the end of his tether due to the lack of adequate respite care. My husband and me both work and our child is autistic, with his own complex needs, so I am unable to support as much as I would like. On reading other stories, people have asked 'Why is dementia not treated by the NHS?'. The system as it stands is unfair. One lady said that she could write a book; my dad says the same!
My wife was diagnosed with Alzheimers nearly 6 years ago. I am her carer and as far as support it is none existstant. I receive no help from the N H S and no help from the memory clinic or the Alzheimers society all I get is the same old booklets and pamphlets but no practical help at all we just two old people left out of the system, successive governments have swept care under the carpet hoping that it will go away. My wife is 86 yrs and I am 82 yrs and feel so let down by society.
My husband was diagnosed with vascular dementia and Alzheimer’s in 2014. I have been his carer 24/7 for the last seven years, watching him gradually deteriorate until he now has no short or medium term memory, no logic or reasoning. He needs prompting, supervising and assisting to get washed and dressed and has no interest in anything. He is unpredictable and can react differently to a situation at any time, being verbally abusive and physically threatening. I worry about him if I am taken ill.
My wife, having two levels of need agreed to be severe, should have been awarded CHC - but the genuine paperwork was replaced by a bogus and much altered document which resulted in CHC being refused
Care needs to be addressed for Dementia/Alzheimer’s sufferers ! Even expensive care homes don’t have enough carers or training. It must be monitored more and stop those sufferers just surviving.
Never let them be kept from their loved ones ever again. My mum deteriorated beyond belief this last year and has now given up and passed away. The care she received was wonderful but these carers are under valued even by the managers of some homes!!!! Something must be done!
King's College Hospital asked Bexley Council to carry out an "older person's assessment", as they were worried about myfather. Bexley council Social Services phoned my father and asked him if he was OK. He said "yes", end of assessment, no further action was deemed necessary. This is a totally unsatisfactory way to carry out an assessment on someone with dementia. I asked for help from the local branch of the Alzheimer's Society, but when they responded 8 months later, my father had died.
As a family we were totally unprepared for the impact dementia would have on us. It has been immense. Trying to get support has been like wading through treacle. As self funders the support from an overstretched and under resourced adult social team has been non existent. Trying to get support has been like wading through treacle. The Continuing Health Care assessment process has blatantly disregarded the National Framework. Health and social care needs should be on an equal footing.
My mother Joan Blass suffered a predatory marriage in 2015. She had advanced vascular dementia but registrars did not have enough training, or robust enough procedures, to spot it and stop the wedding. I want the Government to stop a marriage from revoking a Will, plus to bring in strong procedures which registrars must follow, plus evidence kept at marriage so such crimes against our elderly and vulnerable can be prosecuted. www.predatorymarriage uk for full story!
My mum was diagnosed with alzheimers 4 years ago. I am her full-time carer now as all her savings have gone. I have had hardly any support and all the information I obtained online myself as it seems she has just been forgot about. It needs to change!
Mum unfortunately needed to spend time in hospital and her dementia got much worse as a result. Her personality completely changed becoming aggressive and nasty to me and the nursing staff. The staff had no understanding of dementia and couldn't wait to get rid of her, discharging her back to the home even though it was not equipped to deal with that level of dementia. The care home had no alternative but to send her back to hospital. There was no respect for mum, a terrible time for us all.
Through my parents’ dementia I have experienced many aspects of our broken care system. Enough is enough. I’m sick of seeing dementia treated as a ‘non-illness’. I’m sick of plans to improve the system being shelved. I’m sick of care outside hospitals apparently not counting as healthcare. Our society can and must do better than this.
Simple information for carers is what my father needed when he cared for my mother who had Altzeimers for 15 years.
My mam has been living with dementia for 10 years, five of these have been spent in a care home. I believe she hasn’t had the best care she needs and deserves due to the obvious lack of knowledge and training amongst staff.My mam isn’t living , she is existing. People CAN live fulfilled lives given the right dementia care. Things need to change NOW.It might be too late for my mam but not for people in the future.
Dementia is one of the most cruel diseases I have come across. Mum had vascular dementia and probably other conditions that weren’t diagnosed. We managed to care for her at home until she suffered a massive embolism after which she went into a nursing home. She became immobile and was fully dependent for all her needs. She had to pay a fortune for care that lacked in an understanding of her as an individual. Heart breaking for her and is as a family. I could go on and on. Wake up government.
My mother is nearing the end of her life. She was diagnosed with mixed dementia 3 years ago at the age of 93. Along with dementia Mum has several other health conditions.
Unfortunately tomorrow she is being moved to a Nursing Home which is something neither myself or the staff wish. To move a severely frail confused person at this stage of their life is to me totally unacceptable and should not happen. The staff at Ireland Lodge have been wonderful and I am completely heartbroken.
I looked after my husband for8 years he had mixed dementia and Parkinson’s and a heart condition, he died on the 2 nd of February this year I am absolutely devastated and miss him so much , it is a terrible feeling of lonelyness we were married for 52 years with 3 daughters and 6 grandchildren and a great grandson they all loved there grandad
My husband has early onset Alzheimer's disease - it is so cruel. I have had to fight for everything, every benefit, every piece of support and I am still fighting to get him what is rightfully his and the care he needs. He is not the man I married, nor dad to my daughter, but I will carry on fighting - not just for him but everyone else who comes along behind. This is not fair, right or just.
My message is one of advice to other family carers. At the first signs of memory loss, keep a diary for the first few weeks. Go to the GP and insist that they refer your loved one, as time is of the essence in terms of getting a scan and medication. Get a red button. If possible, arrange for power of attorney and third party mandate on bank accounts. If and when you need the services of a care agency, check the Care Quality Commission rating. Accept nothing less than a rating of good.
My Husband has Alzheimers Lewey bodies,Vascular Dementia and Mixed Dementia,some Carers have had no training and dont understand how complex this illness can be,I am now asking all carers if they know anything about lewy bodies as they could be at risk on a bad day,also need the same cares not changes every week.I hope this helps with your task of getting things changed
My beautiful Mum died last October from dementia. I believe she just gave up. Both she and my stepfather were 85 and both he and I continually struggled to get her the care she needed at home. A care home was not even an option following the cessation of social care assessments by our local authority during the first lockdown. So we just had to cope and do the best we could. Advanced Dementia is a disease and the absence of a professional care system is a national disgrace. This can be fixed!!
After a year of looking after my mum and dad, dad sadly died and for the last six years I have taken care of my live with my 93yr old mum...
watching her become more confused forgetful, tearful, fearful and frail is possibly the most sad and upsetting scenario at any time but coupled with the insanity of lockdowns and no social interaction or entertainment, its indescribable... The stress has made me unwell and now I have no idea what is going to happen. We live in a sad greed-driven society..
Much more needs to be done to provide proper training of care staff in carehomes particularly for residents with dementia. Many staff have little or no understanding of this condition and its very rare anyone working in the homes have proper medical knowledge. Too often , dementia sufferers are treated like objects that must be fed, watered and toileted but not properly engaged with. Mental stimulation is very patchy and pple being left to stare at the wall or tv all day is inhumane.
i work at a care home, who are elderly and some have a diagnosive of some kinds of brain degenerative and forgetfulness ,the home for whatever reason has decided to close and all the residents to be placed in whatever bed they can find some Social Workers play lip service to needs some dont bother asking some families cant be bothered some do care, the majority of staff are devastated by the way the residents have been treated and treated has a by product this is someones mum or dad.
Mum needs a buddy, someone who will spend time with her weekdays, take her out on little outings. Instead all I was offered was 10 free hours so I could have 1hr or 2 to go shopping etc. I live with her, am her carer, & do full time paid employment from home. I cannot offer her what she needs at present, it’s upsetting. Life is stressful. Mum needs some stimulation. I need time & space. I love her & worry for the future & how I will cope as she gets worse. She & I deserve better care & support.
My mum was diagnosed with early onset dementia. We cared for her at home my dad doing most of the caring until it got too hard for him. Mum had to go in a care home it was the hardest and worst decision we made. Mum died on Tuesday the 21st of April and we were given 5hours notice by the home that she was dying, that is all the time we had left with her. Nobody had told us there was anything wrong with her even though we had spoken to the home on Sunday. Absolutely disgusted with the care system
I wish we could have cared for mum at home
Dad died worried sick about mum because they didn't recognise the early signs or know what to do. This has to change!
My mother was diagnosed with vascular dementia & Alzhiemers... Whilst trying to care for & support my mum, and get some help, I spent the majority of my time very stressed out filling in endless forms, phone calls, dealing with interviews, reviews. There is no communication between the different social care departments, I was exhausted from having to repeat myself over and over again, it was a nightmare trying to navigate my way through the complicated, and 'BROKEN CARE SYSTEM'.
I'm sorry I didn't do more
It's hard to write about my dear Mum, Mavis Beale who had Alzheimer's & spent the last 5 years of her life in 3 different care homes.
The quality of care depends on the carer, sometimes they would get to know her and be kind and careful with her, but very often those carers would move on to another job. I imagine it is because they aren't paid very well but also some must find it harrowing to get to know people well and become friends with them and then lose them - like losing a family member.
My lovely husband having to pay for his care even end of life, and after death for one week £1500 this is so inhumane.
Lovely man worked all his life, the system failed him, no-one seems to care even the police, reported the abuse
just a white wash, feel so guilty having to watch my husband deteriorate daily, I would feed him, shave make sure he was clean so I noticed any marks on him, they could not explain, spoke to not nice, no compassion I could write a book.
This must change
My lovely husband was so let down by the system, which now I am left with so much guilt, the problem, there is not enough compassionate staff,
nurses, carers, yes there are good but they have to be vigilant, which some are, my husband was being abused, I could not get answers, one carer helped, told me about this carer, I had suspicion about also, why do they let this go on.
No staff is better than bad staff, one bad apple you have to watch.
My poor husband so poorly end of life.
Hi and thank you for sharing your story of concerns. Since my mother was separated from her very dedicated family over lock down; it is unbelievable how much her physical and mental well being have deteriorated significantly. Yes i totally agree that there is no insight into dementia or even mental health of the elderly . I am retired mental health nurse and have seen this poor practice by general nurses and carers. You go into this profession with passion not all do as iv seen .
Unfortunately like so many others, my mum's house had to be sold to pay for her care home, after a couple of years that money has almost gone, along with any savings she had!
The really sad and annoying thing is about visiting, we are only allowed 30 minutes once a month? Personally I think this is extremely unfair, especially when I hear people get to go every week. Her home also doesn't allow weekend visits, so again very unfair on the residents and their families.
Yes in the homes for Dementia it’s needs someone to have the time just to be with that person not just put in a chair and be left it’s sad
More staff is the answer
After a years struggle not to concede to unfair fees for the minimum respite/day care for John with Dementia I his only family/carer am struggling with burn out.
How can A clinical disease be subjected to costs,assessments+assets/home claims-
Resulting in reduced income,clinical risk and destruction of the health of the carer? And at a time of Covid risk/lockdown and increased expenditures?
My lovely mum has Alzheimer’s and as a family we looked after her for as long as we could but it was no longer safe for her to live alone and we were unable to get any suitable help. We have been forced to sell her only asset, her small ex council house to pay for her care home. We are not a wealthy family and mum worked all her life. No other illness forces you to sell the family home so why are dementia sufferers expected to do so. Something needs to change urgently!
I took a course to become a Dementia Champian , after my husband Ian was told he had Vascular Dementia after a very bad fall which affected his head, Ian spent the last 5years in a care home and unfortunately caught covid. he died on the 8th,February this year.