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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When i got doagnosed at 62 years old i told my self this is not the end but the beginning to get the word out there I go out speak as a Dementia Champion appeared in TV U Tube and Radio and the Media and stay positive
I can now see my husband in his nursing home for half an hour a week. My strong, handsome, football playing man is now unable to stand, or walk. Although his care is good, staff are often thin on the ground and taken up by more challenging residents. During this time when I haven't been able to visit, he has lost any desire, even in his made up words, to communicate verbally . When he makes sounds his voice is raspy from lack of use. He needs the warmth of a hug to make a connection.
Mum had dementia for more than 12 years. We had to sell her home for her care. Initially her care seemed good. But as she got worse the care was not. Black eye, dirty cups, not fed or given enough drink. ( In 24 hours she was given less than 1 pint of fluid!!!!!!) She was unable to move at all or talk and was left alone for a lot of the time. The home failed the CQC inspection.
Eventually we managed to move her to an outstanding home where she gained weight ( at 98 )
This cruel disease robs people of life, it’s quality and enjoyment.
Most robbers are locked up in jail.
My mum has been in North Hill Care Home in Sheffield for almost two years after suffering a stroke aged 64 which brought on Dementia. The staff know nothing about Dementia and seem to taunt her with the one thing that she truly loves (smoking). They often have her in tears and given the last year of being stuck in there with them, my mum is miserable most days. Raising concerns with her social worker is useless. The whole system needs to change.
Mum you were my world. I’m so sorry the care system failed you with poor care took your house your savings your dignity. I love you with all my heart and thank you for all you did for me. Rest In Peace mum I will be forever sorry that I couldn’t stop the horrors of this illness and the bad treatment you received. Goodnight Godbless xxx
I had to fight for my poor mum battling picks dementia she finally ended up in a “care” home. I call them “don’t care” homes. Daily I would go in and ensure she had eaten/drunk enough/been to the toilet as so called “care” staff did the absolute bare minimum. She was not put on a toilet all day long and was not incontinent. I could go on. This is not one isolated “care” home as we tried a few this is across the board. My mum deserved so much better and I now blame myself. Do something . Please!
My Dad was a wonderful caring Man, worked hard all his life. Always helping other people in his late sixties started with Alzheimer’s. The family cared for him as long as we could specially my mum. He suffered for over 14 years the last few he was taken into care. Not what we or he wanted but it happened. Care and support are applauding. Lack off training and understanding hopefully one day things will improve its an awful illness. Sadly For us not for him Dad passed away 3 years ago
This Most Cruel Disease just Robs Our Loved One/s of every single part of Their Being and for My Much Loved Late Dad it was Heart Breaking to see Dad go down hill But Dad had the very Best Care in the Nursing Home Staff were wonderful but briefly Dad had go to hospital for some tests and it felt like Staff did not have much time to spend with Dad through no fault of theirs but there Needs more understanding of effects of Dementia.
My brave, selfless mum cared for my dad for over 14yrs with alzheimers. Sadly the stress /anxiety of caring for my dad had a detrimental effect on her health. The government needs to look & support the carer more. My mum received little /no support due to her pride. Things need to change patients need to be offered daycare so carers can get some well deserved rest. My mum sadly was too proud to accept looking at it as a failing. Things need to change & carers need to have more of a priority.
Mum was a part time nurse for 40 years dedicating her life to caring for her own psychiatric patients. Now in her later life with her children living in other countries and living alone she had terrible care from social services who deemed her ok to live at home alone despite many brushes with death. Eventually she was moved at their insistence to a care home which is lovely but is rapidly devouring all her meagre savings. They are rapidly eroded because nhs doesn’t cover dementia. Why not?
The fear in the eyes of my mother Its only depression say the doctors
A loved one you have known a lifetime pleading something is far worse not being listened to
Come back when they get worse How worse?
The constant crying the loss of belonging wanting to find home but where is that the past has gone. Anger love and hate. Fear of the night. Who can help No cure no treatment No financial support a govt that doesnt try hard enough its not catching at least until its their turn dementia is real!
My mum has been in a care home in Belfast for nearly 2 years now where she is well looked after. But due to covid none of us could travel to see her in person. Every day she forgets a little bit more and without us there she cannot make sense of the jumble of memories she has left. She doesn’t remember where she lived, what children she has (she can remember grandchildren though) or who is alive or dead from her family. She regularly relives the death of her family members from years ago.
Iris fell + broke her hip in her early 90s. Instead of choosing rehab after her op,to help with mobility,Iris went home. Bill her Hubby was in his late 90s, Iris had Carers 4 times a day but she slowly deteriorated as they couldnt move her + attended mostly to change her, turn her, then leave. Bill was upset , he saw the care she recd was inadequate, not Carers fault. Iris had dementia, went into Care -Bill was heartbroken. He died Oct 2019. Iris died of Covid April 2020. Married 61 years xx
Mum’s Alzheimer’s took years to get a diagnosis and support was minimal because she presented as plausible when she was unwell. I begged for support. It got to the point where she was sectioned - terrifying for her and heartbreaking for me. She blamed me for everything and it made her hate me. I became unwell with her aggression verbally and physically. There needs to be more joined up working, shared knowledge and care for carers too. She died after 5 years in care. I love and miss her.
Due to the cost of care families are having to care for loved ones at home until later stage dementia. Care Homes are now prohibitive for old age causing untrained homes taking in Dementia suffers to fill rooms. Staff at Dad’s home are nice but there is absolutely nothing in place to stimulate or occupy residents. We are not given a care plan and receive no updates. Regs stating ALL residents should be under the same GP practice make matters worse. We are prohibited visiting during meal times?
I was shocked at the amount of weight my husband had lost in lockdown. He has been in a care home 3 years. I now go every day and feed him his dinner it takes quite a long time but he eats everything, and I also take him extra I just don’t think the staff have the time to spend on feeding the patients who cannot feed themselves due to dementia otherwise they do a good job but never enough staff
We need desperately the Government to put in place a Social Care plan to help a growing crisis with Dementia. We need greater training of GP’s not just in medical needs of sufferers but understanding the care they need. We need community nurses specialising in care to visit families affected at home and also greater interaction with Carer’s.
Increase the visiting times-for dementia patients
My mum is wasting away behind closed doors, there is no help,no assistance and no one other than us who care about her needs or problems, covid has been a major pandemic, but dementia will not wait until things improve,it has no understanding of what has happened and until there is proper support thousands like my mum will be ignored and forgotten about. Covid is not and has not been the only crisis going on, and until enough voices are heard it will remain that way. Love you mum xxxx
Hi I'm Colin I was diagnosed with Dementia a couple of years ago now (at least I think it was) I'm struggling to remember my family members names and every day things struggling to get word's out and sounding like I want to say I use Facebook as a memory book to help me remember things to tell the truth I'm scared of what's to come I'm getting lazy can't get my self to do things if it wasn't for my wife Julia and my daughter and Son helping me I don't know what I would do xx💜💜💜
My Grandma died at the age of 93 after sufferering from Alzeimers for nearly 13 years. At the end she had no idea of who her loved ones were which broke my heart. She was in several Care and Nursing homes that did their best, but they did not have much idea over 28 years ago how to treat dementia in a caring and positive way. Sadly her daughter, my aunt suffered terribly in exactly the same way. Many friends of mine have died, and I see a far more better way in treating those who still suffer.
My mother-in-law was diagnosed nearly 15 years ago and has spent the over the last nine years in a care home and we have spent the last nine years fighting for justice and fairness for her. Why do dementia patient pay for their care when others do not. For the last 8 years she has had zero quality of life, she is confined to bed and the only reason she is still alive is swallow is the last thing to go so when a spoon of puréed food is put to her mouth she automatically swallows. She is 96.
Missing all the things we shared together, not just the good but the bad too, your our Queen and always will be
Among other thing's, and there are many, the biggest problem there is, that nobody knows where to turn for help and support. There needs to be some one, or department to advise and support, for both the patient and carer/family.
The Government's recent guidance to care homes means that my mother is not permitted to even leave her care home for a walk without incurring an unjust and legally dubious 14 day self-isolation period. She has no way of understanding the reason for her incarceration, nor why her human right to family life is so diminished relative to the rest of the population. When she asks me whether she will ever see her grandchildren again, I hate having to admit that no, she probably won't.
My mum hazel Usherwood was a lovely person and best friend .I miss here lots of fun with had
My Dad died of Alzheimer’s in 1990. My Dad was diagnosed at the age of 52 & died when he was 59. He spent the last 18 months of his life in a secure Psychiatric Unit & didn’t even have a private room when he passed away. Very little was known about Alzheimer’s then & it was heartbreaking watching my Dad lose his memories and his dignity. We must do all we can to prevent this terrible disease and help families cope at this very difficult time of their lives.
I have struggled all tge way along my mum's journey with alzheimer's from a very poor care company, poor and wrong advice from a social worker and now I am struggling for mum in a local cottage hospital. The systems, some attitudes and training really needs sorting out, we are in 2021 and it is still a total mess. What can I do to change this?
My lovely husband died just over two years ago - he had Alzheimer’s/vascular dementia and aortic stenosis which was only diagnosed 6 months before his death in spite of attending a clinic each year for an echocardiogram. The last one he had indicated severe problems, but the follow up appointment he should have had was overlooked by the cardiology department. Very little care from the memory clinic, the hospital and social services . As a carer I was mainly left on my own to manage.
My wife Di taught two generations of local children in primary schoold here in Holmer Green & Little Missenden. Her family seem to have the alzheimer's genes and slowly, from the age 54, she deteriorated until, aged 70 last week, she's doubly incontinent, cannot walk, talk or process vision properly. Now in a care home, she can't feed or 'water' herself and is dependent on carers, thcost of which is quickly devouring her savings. Yet, alnost uniquely, there is no state funding for this illness.
This is not really a dedication as such but a plea for the professionals to diagnose quicker! We have known for two years that it was dementia yet my mum was referred back and forth and eventually received a depression diagnosis!! We knew it was not depression so carried on pushing forward and challenging the NHS - two months ago we got the diagnosis over the telephone!! It is not good enough. My mum thought she was going mad and then to receive the worst news - it was over the phone!
I got in touch with my mothers gp because I can’t get my mum to take her tablets properly.I phoned the doctors and just got told go and get private carers to come in and that was it
After years of depression . After losing two of her children one of 41 with cancer and her other in a car crash . My mother battled . Her life , she loved myself and my sister . And her grandchildren . Dressed in black and grieving for 40 years . But the biggest body blow was when she lost my father he died of a brain bleed . Mum was going to the hospital to pick him up . And he died while she was outside . Mum had a vascular stroke . And developed memory loss. It was devastating it is awful
My mum had dementia for 7 years and was in a care home last year lockdown came and we couldn’t see her for 7 weeks due to Covid she passed away of Covid on the 28 April 2020 the last 7 weeks of her life she had no visitors what that must of been like for someone with dementia is heartbreaking the care system as a whole should be improved for dementia patients I miss my mum so much and will never get over losing her ever
My Mother had Alzheimer's disease and we struggled to get a diagnoses from the healthcare professionals.We had to pay for the care from London care who were closed because of substandard care.Not delivering the care we expected Yvonne to get. To keep her company and give Mum her pills and her meals. And to try to help her with her personal hygiene.As we was unable to get Mum into her bed and into the bath. They were paid to spend 30mins with my Mum. I witnessed the carer twice. In and out in 10
Today went to see my mom. I was so looking forward to seeing her.But the sight of her made me sad .she was so thin she was wearing someone else's skirt her top was marked. She looked a mess what has it come too she looks like she's living in a concentration camp.Thanks Boris Johnson you will be old one day soon...
I work as a senior carer in a care home that promote people LIVING with dementia. We understand and are trained in dementia care. My goal and passion is helping people with dementia to live the best possible life. Everyone is an individual with different values, passion, lifes, religion and family units which is all taken into account to give these people the best life we can. While supporting families to carry on interacting with their relatives.
Dementia is my passion.
More dementia awareness is 100% needed when dementia parents are admitted to hosp. Eg assist with drinks & meals as they forget to eat or don’t realise it’s theres. They must not be allowed to go to the toilets solo as they are unaware of there surroundings. Don’t leave them to their own device to get dressed or washed. My mum was recently in hosp & the care was POOR. I was contacted 3 times to say mum wasnt co-operating with questions so she had to have her needed MRI delayed.
June is my ex.wife we were divorced after 23years of marriage. Sadly about 4 years ago she showed signs of dementia. Our daughter Aimee moved houses and had her mum move in with her and the family. She cared for her mum for 4 years, sadly June passed away on the 6th April.
Mum got taken in to care in 2014, took her house, all her savings, and all her pension.screwed by the system and the bottleless british goverment.
My husband was diagnosed with dementia October 2020. He is only in early stages at the moment. I just want to be prepared of what’s to come. He is 71years old. There has been more of a deterioration due to lockdown.
Dad became unwell at the age of 88 he was assessed and diagnosed with vascular dementia. We had very little after his diagnosis for training or advice. After he settled on medication and his infection and delirium there was no real follow up care we helped care for him at home for 2 years until mum was poorly and died last June. Dad. went into a care home . This was during the lockdown so we couldn’t visit him. I would like to be a partner in his care but I have to fight for this it’s difficult
Hi my husband has dementia ie Alzheimer’s & is probably about mid stage. I look after him at the moment but am worried what sort of care & support is available for us in the future.I think there is a lot more to do to help people through the stages of dementia & support their families.
Why is Dementia in a Social Care problem and not a Healthcare problem? Why should our loved ones have to pay for their care when they are ill after they paid in all their lives to the system? It is a travesty they have to use their own homes as collateral. Shame on you Boris Johnson for your party’s years of Social Care underfunding. Who is going to pay for dementia in future generations of citizens who will not be able to afford their own houses?!! Complete scandal, Public Enquiry needed!
My Grandma passed away in October 2020. I am so grateful for the care she received and that she had a loving family. I am disappointed with the fact that we had to video call her GP to determine if she was at the end of her life. It was so upsetting and I felt it was degrading for her. Xx
Give our senior citizens the Care & Dignity they deserve...Make changes to the Social Care System-ASAP
I have been too busy coping with the obstacles in the care system, going to the hospital and looking after my wife to write a coherent story
The culture of my mother's care home has changed. Covid-19 stopped my daily visits. When visits restarted, the deterioration in her mental, emotional and physical health was dreadful. Loss of weight, unable to walk, terrified that I would disappear again. My role in caring is still not acknowledged. We are treated as outsiders permitted to visit on Care Home terms. Culture needs to change from management/government. Many carers hate being asked to regulate us. A few seem to enjoy it.
You were my rock ! I fought hard with the authorities and
professionals to put into place care and support that gives you to live in dignity as you are the vulnerable being with loss of speech bed bound now of a different culture and language .
The professionals are the Day Care center who sent you home in soiled clothing , the Occupational Therapists whoprescribed the minimal equipment when you were not steady ! The community nurses who never turned up , the incontenent dept who never resp
I’ve spent half my life with this person and yet I’ve had to hand him over to a care system which neither loves or cares for him in a way that he deserves. And I have spent most of our wealth in payment for it.
It is the small things that count.....
For a year this woman was deprived of the love and care of her family. Even now with visitors allowed in she is only allowed one visit a week with upto 2 visitors. We all love and miss her and are being deprived of her.
Desperately sorry that you've not only lost touch with who you are but also the touch of those who love you most
My husband, Richard Lucas, had a CVA in 2000 when he was only 60. Long term issues included, unilateral neglect and lack of awareness of left side, visua, cognitive, sequencing impairment. He had Continuity of care by NHS and Social Care. When diagnosed with Vascular dementia there is no support from NHS or Social Care as support is left to local or National Charities. Boris should set up an NHS and social funded integrated care for patients and Carers. BJ’s Post Covid19 Legacy.
My message is simple, why do dementia patients and their families not matter, Paul is now in a care home, because I couldn't cope any more, the doctors and social have been of no use at all, I was left on my own with out any help ,we deserve better
Dad was diagnosed in 2017 and we as a family have been managing his care. As the illness progressed we sought help from the GP who prescribed medication for depression. We even paid for private consultation and took those recommendations to the GP but he referred him to the psychiatric team. I have tried 3 times now for a needs assessment from social services but nothing so far. Extremely upsetting and feeling of being abandoned and upset that we will never get the care and support he needs
I have Temporal Lobe Epilepsy. The increase in my seizure frequency has affected my memory. It is getting worse. I have been tested for alzheimer’s, I do not have the illness.
I just want to say how frightening it is to “feel” my memory “disappearing”.
My heart goes out to everyone with memory issues. The DWP seem to have no idea how to help people with mental illnesses....
She was first tested for memory loss in October 2018, but there's been no further tests arranged. For a year I've been trying to get 1 because her condition has deteriorated. The GP has followed it up at least 3 X with the Nelson hospital & says there is medication that can slow down the process but without the test / brain scan I have been unable to get this prescribed. She's also heart patient, has type 2 Diabetes, takes 9 - 10 pills a day incl. Warfarin that I have to try to control.
As soon as he was diagnosed with Alzheimers, Brian was discharged to his GP. He has new symptoms which may or may not be related to the disease or his medication. Nevertheless, the GP referred him back to the memory clinic, who immediately referred him back to the GP, insisting they're a diagnostic service only. There's plenty of emotional support and practical tips from Alzheimer's Society, but no local health carer takes responsibility for ongoing care. My husband feels abandoned.
My dad died of Dementia in 2000, I had to battle to get both him and Mum the benefits and help that he needed, it was a struggle, to both look after him and to get the social people to listen to what we actually needed, now Mum was diagnosed about 8 years ago with dementia, I had to give up work to look after her, I was facing the same 'funding' battles as we did for Dad, so all that time and nothing had changed, thank god for age concern, who helped us through, the funding is not enough though,
I’m a retired mental health nurse dedicating a lot of my career to dementia. Please put the money into facilities and interventions to support those affected by dementia to remain at home in familiar surroundings with people who know them so well. We should be aiming for less use of ‘care’ facilities as these are not providing the right quality of care for people. My last 7 years have been working for one of these providers. The criteria for opening such a home must be very much higher
Contact your MPs and fight fight fight we have to be the voices for our loved ones
We need CCGs to train assessors properly and apply the guidelines for funding and stop trying to save the government money that our relatives are entitled to!!
Stop the lies and playing down the extent of somebody’s care needs to deny them the free card they are entitled to!!!
Read the government guidelines NHS continuing health framework and fight your corner don’t let them bully you !!
I experienced vascular dementia with my mother. From 2002 until her passing in 2013. It was extremely stressful having to go through court of protection. Mum was put into a care home she had to pay for (her home having to be sold) I received little help or advice & though it is some years ago, I have heard nothing much has changed or improved. From GPs, Social Services, or hospitals. Communication & care must improve, no one should have to go through what mum & I had to but I know there are .
When Dad turned 90 he was diagnosed with dementia. Unable to live independently, he sold his home, cashed in his savings and moved into a care home. After three and a half years, with his savings now diminished, we were told by the local authority that he would have to move. Given the pandemic and his dementia, we decided to bring him home to avoid the trauma of uprooting him. Dad fought for his country and was never a burden on the state. His story highlights the urgent need for reform.
I lost Pat from Dimentia after55 years of Happy Marriage. The loss has been hard on me, one does not realise ow much a wife does for one. So if you have a good one take care of her
My husband Rick was diagnosed with Alzheimer's 3yrs ago. He had memory and organisation problems for many years before that, brought to light by a bad experience in A&E, followed by short stay in hospital, both avoidable and due to cuts at local hospitals.
We were referred to a local centre, saw specialist nurses and consultant, assured us they were always there if we needed them. We last saw them in October 2019. Since then nothing. Family are our help, but need more now.
My mum was 55 when we she was diagnosed with early onset Alzheimer’s. It was heartbreaking. She had moved to Ireland to retire early & be with her family. For 2 years we did our best to support family with regular trips. Mum has gotten worse gradually; & now at 28 I care for my Mum who lives with me and my partner. What’s clear to me is how little people still know about Alzheimers; & how difficult it is as a young carer to get access to support. The government must do more to help us.
My Dad, Billy, passed away in March after an almost 7 week stay in hospital. He had a fall at home and broke his femur, the only way to fix this was an operation. Dad had Alzheimer's and lacked capacity to consent to surgery so I did this for him. While in hospital Dad contracted covid, he lost his appetite immediately but the hospital(s) constantly blamed this on his dementia, they wouldn't listen to us that it was down to covid. Medics need to pay attention to families.
My mum was diagnosed with Alzheimer’s in July 2020. We have had no support since diagnosis. I am an unpaid Carer for her and also work full time. The situation is a very physical and emotional challenge. More financial support is needed to enable Carers to Provide the support the person suffering with dementia deserves.
Mum and dad were diagnosed with Alzheimer’s in April 2019. After a quick decline in them both they went into residential care on 05/02/2020. Throughout the year I had limited visits with dad and none with mum. Both contracted Covid and recovered but dad passed away in November from Covid Pneumonia (but more than 28 days from testing positive!) Thankfully I am now able to see mum and my brother has visited for the first time in over a year. She now has advanced dementia 😢
My mother recently passed away, 13th February. She was in a nursing home that was locked down for the preceding eleven months. My mother had Alzheimers, and I used to visit her every day to support the carers to feed her and give her drinks. The carers were only allocated 15 minutes per resident for nutritional support. I could spend as long as I wanted to help her maintain her fluids and nutritional levels. That was taken away from us. During lockdown her weight plummeted.
Dementia is bad enough but combined Coronavirus it is unbearable.
As Bo says Why did this, corona virus, happen to us?
Fix this broken system, start giving more help to home carers
My father was diagnosed with dementia but up until March 2020 had an active life although he lived in a care home. He had regular support from family but darkness came when Covid arrived - the deterioration in him over eight months was heartbreaking but I am very thankful to the care staff that supported us all and continued to care for my father until he passed away in November with thankfully myself by his side.
I will be forever indebted to the care staff in the care home ......
I forget I can't ring you each day for a chat, I forget I can't ring to say 'IT'S SNOWING',I forget I can't tell you that your cousin has died, I forget I can't tell you that your Grandson is living his dream, working as a Lego Designer, I forget I can't tell you that your Grandson is playing the 'beautiful game' in USA, I forget I can't ask you who's your favourite on Strictly, I forget I can't ask you who you think will win The Jungle, I forget that it's you with Dementia!
I can’t understand why my dad has to pay £5580 a month for his care. My dad has Alzheimer’s which is a disease of the brain. He should be getting help with this. He worked hard all his life why should he pay for all his care. If they changes this he should be entitled to some money back.
You are so brave & beautiful & kind. I love you so much my angel x
I last physically last saw my nan in Feb 2020 since then its been brief and sometimes unresponsive facetime calls. The most heart breaking thing is I've slowly watch my nan deteriate over time and not been allowed to hug her or hold her hand has been hard. My mum (her daughter) has struggled mentally and emotionally, she has gone from full time career to part time visitor, our loved ones need us that brief visit and physical touch brings her back and for a short time she is mum and nan again.
Husband has Parkinson’s/ Dementia. Day of lockdown last March. Husband was admitted to Hospital with phewmonia.4 weeks later admitted to a care home for assessment! No one could assess him due to covid. 4 months later he was admitted to another care home near our home. I had window visits which were soul destroying. He has lost 4 and a half stone, needs hoisting, incontinent and needs a soft diet.
I have been trying to get him home for months. To many issues to go through but I am not giving up
Our parents are both in Care and haven't seen each other since their 60th wedding anniversary on 10th September 2020. Sylvia has Alzheimer's and is losing her ability to recognise any of us. And meanwhile their only savings are being dwindled away as we pay over £5,000 a month for their Care places. They have worked hard all their lives and paid into the system throughout. How can it be that Alzheimer's, the cruelest illness, falls outside of continuous care from the NHS? We must do better.
Just because you have been diagnosed with dementia the world does not stop
My dear mum, Marjorie suffered from Alzheimer's and lived in a care home after I sold her home to pay for her care. Unfortunately in June 2020 she passed away, not from Covid but it had an impact on me, her only child, as I had not seen her for weeks previously due to the restrictions. I am still grieving and cannot forget that I couldn't be with her at the end. Mum must have thought I had abandoned her which I will never get over.
Mum not getting the best care
My mum aged 96 is living with dementia and since Covid has deteriorated immensely. She is extremely lonely and depressed. We are trying to find a Care Home for her but we are not allowed to visit any and should we choose one without seeing it, we would not be allowed to take her to her room or settle her in. We would have to leave her at the entrance! Who would move to a new home without ever seeing it? Surely it should be possible now with two visitors being allowed for each resident to visit.
Read all about NHS Continuing Health Care which the nhs keep very quiet about
It is available for anyone over the age of 18 who has a disability accident or deteriorating health it is not means tested
You can be fast tracked or have full assessment for eligibility
If you have primary health need and need nursing care
But it is difficult to get past the local CCGs who seem intent on safe guarding monies that our loved ones are entitled to
Appeal right to the top!!!
Mum has had two stays in hospital and lived in three care homes since 2019, she is only 77. Her last move was driven by her care home being closed by CQC in the middle of lockdown. We weren’t allowed to visit our chosen new home, to pack her things or go with her to settle her in. 6 months later we still haven’t seen inside her home or spent any quality time with her. As her daughters and her only constant advocates, we feel totally excluded from her life and care.
Make the system fair.
Terence (Terry) is my Dad, I still find it difficult to use a past tense. He had to go into emergency respite care last December. He was super vulnerable with vascular dementia and bowel.cancer. His journey between respite and full time care resulted in him catching Covid-19 and eventually, in 2 weeks, his death.
The care system in this, one of the richest countries in existence, is destroyed. BORIS - SHOW A MODICUM OF RESPECT AND SORT IT OUT!
We, as a family feel the guilt of not being able to look after you in the place you call home. The upset made even harder having let go of your hand as you were taken up to the ward in the hospital not knowing when we would see you again. In times of covid so many people couldn’t see their relatives. How confused you must have felt when nobody came to visit when faces unfamiliar sat at your side.You must have thought you would never us see again. Selling your home to fund your care hurts us more
This disease has taken my gorgeous mother from her family and friends day by day. She's lost herself and we still have a long way to go. Tears are shed daily as she struggles with her confusion and knowing she's not who she was.
Joyce was in a Frome 'care' home that blocked me from taking her out during COVID lockdown March 2020. This forced me out of my top up fee budget. I informed the home's finance team and Virgin 'Care'; the latter flagged my situation as urgent; a social worker came 6 months later! Threatened with lawyers, my mother was forced out to another home when she was extremely frail. She arrived with a stage 3/4 pressure area, now under a safeguarding investigation and passed away 4 weeks after the move.
Maureen, my lovely Wife of over 55 years, was diagnosed with Alzheimer/Dementia in 2018 and regrettably we had no alternatives but send her to a Care Home last October. During the last few years she had been deterioration slowly but suddenly the lock down of Covid-19 has accelerated the deterioration of her mental condition. It is heartbreaking, it's cruel, it's terrible, to feel unable to do anything to help
My mum has suffered with dementia for three years it Hurts me to see her like this all her memorys gone more support more help ways to slow dementia down is what is needed and hope it comes soon its heartbreaking
Moving to CareHome at 98 yrs has been a tough experience. But being able to train as a volunteer in the CareHome has allowed us to keep our relationship going. I have recently started a course of chemotherapy but I’m reassured that you will be looked after well even though I can’t volunteer as often. It comes at a price over £7000 a month from the sale of her home.
To my beloved husband, the love of my life, my whole world
Despite my mum being 103 she was still sound of mind as I was able to visit her every day in the care home. Covid struck and, although I had weekly visits in the garden at a metre apart she could neither see nor hear me. Mum quickly developed dementia and her health plummeted rapidly. Mum died alone, despite being promised I would be able to be with her. It was a tragic end to a wonderful life of a truly wonderful lady who served and cared for others all her life.