Norfolk care home accused of waking residents with loud music to save money

Staff at Iceni Care Home say vulnerable residents were treated as if they were ‘on a farm’ to reduce workload

Thomas Ryan and Clare Miller said said the alleged mistreatment of residents could have been avoided if the operator had paid for more staff. Photograph: Si Barber/The Guardian

by Robert Booth

Care workers at a private care home forced dementia sufferers out of bed as early as 5am and woke them by blasting loud radio music to save money, whistleblowers have alleged.

The management of Iceni Care Home in Swaffham, Norfolk, received repeated complaints about the practice this summer, as concerned staff said vulnerable residents were being treated as if they were “on a farm” in order to reduce the workload on daycare staff.

One alleged incident was reported in October after it was claimed screaming was heard before two agency care workers were found forcing a woman with dementia out of bed before 6am.

Thomas Ryan, a whistleblower who managed the Norfolk care home at night, said he ran to the scene to find “the lady was screaming, lashing out”.

He also alleged: day staff would turn up Alexa speakers in the corridors to play Kiss FM outside residents’ rooms at 6.45am to wake them; prescriptions for medicines such as anti-psychotics and antibiotics had on occasion not been collected for two weeks; and incontinence pads were locked in a cupboard at night, leaving residents unclean.

The care home is one of several owned by Syed Anjum Hussain, a 48-year old businessman based in Hertfordshire. It is one of about 1,500 residential care homes in England rated as “requires improvement” by the Care Quality Commission (CQC) regulator.

It said it was unable to publicly comment on the allegations but safeguarding allegations are routinely shared with CQC and the local authority.

Ryan, who ran night shifts at Iceni, and his fellow whistleblower Clare Miller, a senior care assistant, have worked in social care for more than four decades combined. They said the alleged mistreatment of residents could have been avoided if the operator had paid for more staff. This would have allowed staff to get residents up only when residents chose to.

“I hate the fact that families have to hear this, but they need to because this is going on behind their backs,” said Miller, who described it as “organisational abuse”.

More than 150,000 posts are vacant in social care in England and government plans that emerged last week to restrict migrant workers risk worsening the problem, sector leaders fear.

Miller is the daughter of Ann King, whose abuse in the Reigate Grange care home in Surrey was exposed by the Guardian last year. She started working at Iceni in April 2023.

“The attitude regarding getting people up in the morning is disgusting,” Ryan told the care home operator by email in August. “It is not a farm. We will not force people out of bed … It is the residents’ choice not the staff’s. This is abuse and the home is allowing it to happen, despite me telling you.”

The care home operator welcomed his feedback as “very useful” and said people should not be “got up for the convenience of the team”. Ryan and Miller said problems persisted in the following months and they quit.

They told the Guardian staff were often not washing people when they changed their pads, leaving them soiled. Pads had been locked away. The care home manager told Ryan this was because “the night team had borrowed excessively”.

“They had the money to fix the problem,” Ryan said. “It has to change. We are all going to reach an age when we need help and if there isn’t caring help there, where are you going to go?”

A spokesperson for Norfolk county council said it was seeking assurances from the care operator about care and support. It said the home had been responsive and referred itself to the local authority safeguarding teams.

Peter Dean, a registered manager of Iceni Care Home, said: “All complaints and allegations are thoroughly investigated within our established robust processes. Safeguarding allegations are routinely shared with CQC and the local authority in a transparent manner, with whom we always maintain close communication.

“In keeping with our policy and obligations of confidentiality to service users and other stakeholders, we are unable to publicly comment in respect to these specific allegations.”

He said where allegations were unsubstantiated the complaint was closed, and where allegations were confirmed, changes were implemented to improve the quality of the service.

“We operate an open culture where we value the lessons learned from feedback,” he said.

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Norfolk care home accused of waking residents with loud music to save money

Pa. man raped 94-year-old dementia patient inside care home: police

By Jonathan Bergmueller

An Allentown man accused of raping a now-dead 94-year-old woman with dementia at the care home where he worked at will go forward trial, according to the Morning Call.

A fellow aide at the South Mountain Memory Care testified Wednesday that she walked into the woman’s room on Feb. 2 at around 5 a.m. and saw Anthony Clark, 49, standing between the woman’s legs and holding her upper thighs, the newspaper reported.

Clark’s pants were pulled down and bunched around his lower legs, the aide told District Judge Jacob Hammon. Because of her condition, the woman was unable to communicate, according to the Morning Call.

“He let go of her and just stood there, staring at me,” the aide said.

After she reported the incident to a supervisor, they immediately fired Clark.

The aide didn’t see a sexual act occurring, but prosecutors said DNA evidence collected during the rape examination belonged to Clark, according to the Morning Call.   

Police charged Clark with rape, involuntary deviate sexual intercourse, institutional sexual assault and sexual assault, in addition to rape of an unconcsious victim and rape of a person with a mental disability. The judge this week determined prosecutors had provided enough evidence to carry the trial forward to Lehigh County District Court.

The elderly woman died in June from unrelated causes, according to the Morning Call.

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Pa. man raped 94-year-old dementia patient inside care home: police

Woman Who Fell Off Bed Beaten To Death In Care Home; Caretaker Indicted After Video Shows Abuse

By Suneeta Sunny  

KEY POINTS

• Cynthia Garrison was found dead on June 19, 2020
• Her body had blunt force injuries
• Anthony Freeman is being held in Shelby County Jail

representational image. The victim was found dead on her bed with blunt force injuries and cuts on her body. Photo: pixabay

A man has been indicted for murdering a vulnerable woman at a Tennessee care home after a surveillance video showed him beating the victim who had fallen out of her bed.

Anthony Freeman, 53, who worked in a non-licensed care home for elderly and vulnerable adults in Cordova, was indicted Monday on first-degree murder charges in connection with the death of 59-year-old Cynthia Garrison, a news release from the office of Shelby County District Attorney Amy Weirich said.

Garrison was found dead in her metal-frame hospital bed inside the care home on June 19, 2020. Officers who responded at the scene determined that her body had blunt force injuries.

Investigators reviewed surveillance footage at the center to know the events that had led to Garrison's demise. The video showed Garrison falling out of her bed hours before her death. Freeman could then be seen in the footage beating her with a board for more than two hours.

After the assault, "she [Garrison] was left on the floor while Freeman sat in a nearby chair," Weirich said in the release. Freeman eventually put her back in the bed and cleaned up the area where he had beaten the victim, the video revealed.

In addition to the murder charges, Freeman was also indicted on felony charges on counts of aggravated abuse, neglect of a vulnerable adult and tampering with evidence. He is currently being held in Shelby County Jail on a $150,000 bond, reported ABC 24.

Another care worker in Iowa was arrested earlier this month after she was caught on camera pinning down an autistic man and physically assaulting him. Dzenifa Kostic, 32, was taken into custody after the victim's mother received a video of the assault. The clip, which circulated on social media, showed Kostic sitting on top of the non-verbal victim while attacking him. During her arrest, Kostic claimed she had only tried to control the man who had been smacking and choking himself. Kostic was charged with wanton neglect of a dependent adult.

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Woman Who Fell Off Bed Beaten To Death In Care Home; Caretaker Indicted After Video Shows Abuse

Dapper 103-year-old Tom Jones follows in Captain Sir Tom Moore’s footsteps

 By Luke O'Reilly

A dapper 103-year-old is following in the footsteps of Captain Sir Tom Moore and walking to raise money for charity.

Tom Jones, "not the singer", has been pictured doing laps around the garden of his care home while wearing a tuxedo and sipping a cocktail.

He has been living at Groveland Park care home for the past nine years, where staff say he is a “big character” beloved by all.

The great-great grandfather decided to embark on 1,000 laps of the garden as a way of expressing gratitude to health and care workers after receiving both doses of the vaccine.

Tom, left, with Nicola Jones / PA

He said: “I was so happy that I can help in a way.

“I wanted to highlight the NHS, the care home and the GPs.”

The fit and healthy centenarian has been taking to the garden every day and donations to his chosen charity have been stacking up.

So far Mr Jones has raised more than £1,800 for Greenwich & Bexley Community Hospice – smashing his target of £103.

“I did 1.44 miles on Wednesday and that’s not bad for 103”, Mr Jones said.

Groveland Park care home manager Nicola Ireland is full of praise for Mr Jones.

She said: “He’s incredible.

“He’s amazing, he’s really on the ball.

“For a gentleman that’s 103 he’s very fit, he’s very knowledgeable, he’s got full capacity.

“He just lives life to the full.

“He did say he would like to do 1,000 (laps) and we sort of said ‘Tom you’re 103’ but who knows?

“Tom does what he wants to do, he’s a big character.”

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Dapper 103-year-old Tom Jones follows in Captain Sir Tom Moore’s footsteps 

Covid: care home called police after woman sneaked in to see husband

Patricia Hodges, 75, wanted to move Graham, 83, to another home after being denied visits

Patricia Hodges outside Wayside House in Bromsgrove, Worcestershire. She was unable to see her husband from March to October. Photograph: Andrew Fox/The Guardian

by Robert Booth

A care home called the police when a woman who had been denied visits to her 83-year-old husband for eight months amid the Covid pandemic sneaked in to get him out.

Patricia Hodges, 75, used to visit her husband, Graham, daily at Wayside House in Bromsgrove, where he was being cared for with Lewy Body dementia. But her anguish at being prevented from seeing him from March to October, and a row over fees, sparked an attempt to move him to another home, she said.

The incident on 28 October followed a dispute between the Hodges and the care home, which began with requests for visits being denied. It ended with the home’s owner being accused of “holding” Graham Hodges over missing fees, which the home strongly denies.

Wayside House granted Patricia a visit the day before she tried to enter the home – the first in 221 days. By then the family had booked a new home and they were fearful of further isolation in the second wave of the pandemic.

The dispute highlights a dilemma facing care homes being asked to balance infection control with the mental health of residents and their families.

Last week a woman was arrested when she tried to release her mother from a care home in Humberside which had also stopped normal visiting. MPs are set to debate the issue in parliament on Wednesday.

“I rang the doorbell and I wasn’t going to be let in,” said Patricia, describing how a handyman had left a side door open and she entered to get her husband out. She was confronted by the care home owner, Rakesh Kotecha, who warned she was a Covid risk and subsequently called the police. Officers eventually asked her to leave the building where she was staging an impromptu sit-in.

In the car park, the Hodges argued to police that the home was exceeding its rights. Officers spoke by phone to social services and other professionals, who said there was no reason not to let Graham leave. He was finally allowed to move the next day.

“When Graham came out to get into the wheelchair taxi, he let out a loud cheer and then started weeping when he saw Bethan [his daughter] and the grandchildren and told them he loved them all and would be able to give them a kiss now,” said Patricia.

Kotecha said staff and residents could not be put at risk for one family to be able to visit, and that strict visiting restrictions and policies were needed to keep the home Covid-free.

“Of course we would love to have families visiting,” he said. “In the pre-Covid world we had no restriction on visiting hours at all.” He added that the home has now started allowing visits in a specially prepared room.

In June, Gethin Hodges, the resident’s son, had asked for a five-minute visit for his mother. He wrote: “My father is very frail and I don’t believe he will have many months ahead of him and it may well be the last chance my mum gets to see him.”

The home replied that only end-of-life visits would be possible and offered to facilitate video calls. It said: “Our concern is that if there is a second pandemic that by reopening our doors too soon, [we] might allow the virus into the home.”

The dispute developed when the Hodges declined to pay a 20% fee increase which the home said was to reflect increased costs from Covid such as for PPE.

In August, increasingly concerned about Graham’s wellbeing without visitors, the family gave the home a month’s notice. Kotecha said he wouldn’t allow an assessment of the resident’s health to be made by the new home because of £12,000 in owed fees. But he denied the family’s claim he was trying to “hold” Graham until he received payment.

He told the family: “It is the norm in the sector that another provider would not take a resident who has outstanding fees, as the new provider would not want to end up in the same position.”

Kotecha said the money “was not an issue as the care and safety for our residents is first and foremost … A move from his home was not going to be in his best interest as his health may well deteriorate”.

A fortnight later, Kotecha informed the family their August notice had “expired” and the home needed a new notice period to consider moving Graham. The family said it provided this on 1 October but Kotecha said he never received it. In late October, when the family said they were coming to collect him, the home said it still needed a period of notice.

“We had written to the family on several occasions asking them to provide a rolling notice which would have taken care of this issue,” Kotecha said. “They failed to do so. They were sent a reminder on 6 October that if they still wished to move [their] dad then they needed to provide a notice, which there was no response to.”

The family said it consulted Worcestershire county council social services and a solicitor who advised that the home had no rights to hold him, if it was doing so. Graham has now moved into a new home and is in a period of isolation before visits can begin.

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Covid: care home called police after woman sneaked in to see husband

'We sprang Grandma from the care home'

By Andrew Bomford

The decision to place an elderly relative in a care home is a difficult one at the best of times, but the coronavirus pandemic and the restrictions on visiting make it even harder. For one family it seemed like the best solution before the virus arrived - but early last month they reversed their decision and brought 95-year-old Rita home.

It's late on a Saturday night, and a private ambulance pulls up outside a care home in Norwich. Rita Perrott, a frail 95-year-old, is helped out of the home in a wheelchair.

"Grandma!" shouts her granddaughter, Anna, delightedly. They give each other a long hug and a kiss. It's the first time in months such normal physical contact has been possible.

Anna appears almost giddy with the audacity of what they're doing.

"We've stolen grandma!" she proclaims.

"A kidnap?" Rita asks, playing along with the joke.

"It's a heist!" says Anna. "We've come late at night to steal grandma back!"

"I think they noticed," observes Ethan, one of the ambulance crew. The care home, of course, has agreed for her to be discharged.

Rita in the ambulance

Anna gently tells Rita they're on their way to the home of her daughter-in-law, Sue - Anna's mother. She adds that the reason for the move is that it had become almost impossible to visit her in the care home.

Rita is surprised by the late-night raid - they had no time to warn her in advance - but delighted that she will be able to spend more time with her family.

"Your poor mother!" she jokes.

Rita has dementia, and has grown increasingly weak and frail. She can no longer walk and even finds standing up painful.

Sue and the rest of the family are going to care for Rita now. The doctors say Rita is reaching the end of her life and the family could not bear the thought of her dying alone in the care home.

Even the ambulance crew is struck by the incongruity of what they're doing. "We only ever take people into care homes," they tell Anna and her mum. It's the first time they've taken anyone out of one.

Rita had been in the home, Homestead House in Norwich, since the start of the year. It began as temporary respite care, but morphed into a permanent arrangement. Then coronavirus came along, and scuppered all the family's hopes for the part they would play in Rita's care in her final years.

With the home in lockdown, at first visitors could get no further than the car park, with Anna and Rita separated by a glass door, speaking to each other by telephone.

Later, visits were limited to one person visiting every two weeks, at a distance of 2m and wearing full personal protective equipment (PPE).

It was a far cry from Rita's early weeks in the home, when Anna had even been able to help bathe her grandmother.

Although it had been an agonising decision for the family to place her there, Rita agreed it was the best care option for her, because everyone in the family was leading such busy and complicated lives. And she says she enjoyed living in the home, and making friends with the other residents.

For years she'd been cared for by her son, John, Anna's father, but he developed serious health problems and eventually had to have a leg amputated. For a while he struggled even to look after himself. A spell in hospital for Rita also exacerbated her problems; it was noticeable that her dementia was growing worse. 

Anna, Rita and John in March, discussing the future with a representative of the county council

At one point mother and son were both in hospital at the same time. When Rita was discharged, she was sent to Homestead House while a more permanent care solution was arranged, with Norfolk County Council agreeing to fund her social care.

"Well, you just keep a troshin'," Rita says a few days after the heist, lying in her newly delivered hospital bed in Sue's spare room, and being waited on by the family. Rita has a wealth of old rural Norfolk sayings. "Keep a troshin'" means to carry on threshing.

Rita is carrying on gamely. Basking in the warmth of her family's love and care, she has rallied to some extent and has been sipping sherry from a straw, along with lots of tea and cake. She has a wicked sense of humour and says, with a glint in her eye, that she's looking forward to watching the Tour de France later.

"She likes their legs, you see," explains Anna. "She's only human."

Anna, Rita and Sue

For 95 years Rita has been at the heart of a close family.

Anna's mum, Sue, who is divorced from Anna's father, says Rita practically brought up her three grandchildren - Anna, Elly and Rachel.

"We had some good times all together," Sue recalls. "Lots of laughs."

"Very happy memories… It's been lovely," agrees Rita.

"This is so nice, thank you all," she says, taking quick, short shallow breaths.

"And I do appreciate all you have done. It's such a lovely feeling being loved, and loving back.

"Isn't that nice when you can look back on a happy time, with a dear little family, who've made me so welcome, and so much appreciated. And I thank you all," she says. Then she punctures the moment before it gets too maudlin: "Speech over…"

The family says they understand that care homes have to be strict about visiting, in order to keep coronavirus out. They have no criticism of the care Rita received.

But as her health deteriorated they found the restrictions on visits increasingly intolerable.

Rita lost a lot of weight in the home, and as she grew weaker she was taken to hospital for a few days. And there, it turned out, visiting arrangements were much more flexible.

"We were delighted when she went into hospital, because we could go and see her," says Anna. "It was really lovely."

But within a few days the doctors said they couldn't help her. She was at the end of life, they said, and would need to return to the care home.

Anna, Rita sipping sherry, and Elly

Anna asked about the home's visiting arrangements when someone is dying and was told that one family member could visit twice a week for just 20 minutes a time. Again, they would have to wear full PPE and remain at a distance of 2m.

"You're not even able to hold your loved one's hand when they're dying," says Anna. "And the chances are you'd miss it anyway. The idea of her being on her own to die just sounded barbaric and very cruel, not how we'd planned for that to happen."

"The most important time of grandma's life, being with her family was taken away from us," says Sue. "That's why we made our decision for her to come here."

Sue recently retired as a nurse, so feels confident that she can care for Rita. But she says she's aware that many families in a similar situation would not have the space, time, or experience to do the same thing.

Rita's son John, her ex-husband, agrees. Despite the divorce, the family has remained close.

Rita, Anna and John earlier this year

"My greatest fear was that Mum would have passed away and we would not have been able to see her," he says. "I think there needs to be more flex in these arrangements. We support care homes in what they're doing, but at the same time it's a huge tension."

The so-called heist was planned in a hurry, out of a fear that the care home might lock down completely, and not let any of the residents out.

Now the family is concerned that restrictions on household mixing will become tighter.

Since Rita came home, other relatives have also been able to visit Rita, and will continue to do so as long as the rule of six remains in place. They are determined to make the most of the time they have together.

The family thinks Rita would have probably died by now had she remained in the home and they believe her days are numbered even now she is with them. It's something they have been coming to terms with over the last few weeks, and they speak openly and honestly with Rita about it.

"It's not just about dying, but dying well," says Anna.

"We're waiting for a chair upstairs," says Sue. "It's standing room only in heaven but Grandma needs a chair."

"We'll know when it's time," adds Rita.

I asked her how she feels about dying.

"It's fine with me. Everything has worked out ever so well. You only live once don't you?"

"Will you be sad when she dies?" Anna asks her sister, Elly.

"Yes, but I am the person I am because of her and what she did for me as a child," says Elly. "It would just be the end of a lovely life. It will be tainted with sadness because I can't imagine life without Grandma. But it's ending how she would have wanted it to end."

On cue, Grandma suddenly breaks into an old song.

"Now is the hour for me to say goodbye…"

"Oh blimey," exclaims Anna.

"Soon I'll be sailing far across the sea," Rita continues.

"While I'm away, oh please remember me…

"And I can't remember the rest!"

The family breaks into laughter. It will no doubt be a good way to go.

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'We sprang Grandma from the care home'

Coronavirus: 'The care home lockdown sent my senile grandad into spiral of decline'

By Tom Brada

Image copyright Family handout

As I wheeled my grandad Martin up the ramp and into a taxi which would take him away to the care home, I repeated the white lie my family had agreed might make this painful scenario slightly easier.

"You're going to see the physio who will look after your leg and then you'll be able to get better." 

Thankfully his dementia meant that he couldn't fully understand what was happening or where he was going. In fact, he seemed to quite enjoy the novelty of being outdoors for the first time in months. But my granny and I were raw with emotion. 

Grandad, nonplussed as to why I might be crying, instinctively reached out to stroke a part of my cheek not hidden behind my face mask. Granny blew him a final kiss and the taxi pulled away, leaving me, Granny and my brother-in-law silent in the middle of the street, awash with guilt and relief. 

Well into his 80s, my grandad still looked immodestly young and was frequently challenged for his pensioner ID when boarding a bus. During retirement he spent many years volunteering at an elderly care home, caring for people who were often much younger than him. 

But as his 10th decade arrived, so did dementia and things started to fall apart. He'd lose track of his words mid-sentence. Making a cup of tea became a challenge. One time the fire brigade descended after he fed a cracker into the toaster. Family rescue efforts were appreciated by my 92-year-old granny, but in truth they were just stop-gaps - like fixing plasters on a broken leg. 

"Ageing isn't for sissies," she warned me. 

When lockdown began, the situation only worsened. Grandad had no understanding of the virus and the changes and restrictions it brought. In late June, my grandparents quietly celebrated their 70th wedding anniversary. Just three days later, Martin moved into a care home. The decision was agonising, but by that point, unavoidable. 

Our family's situation is not uncommon: more than 300,000 people with dementia are living in care homes across the UK, according to Alzheimer's Research UK. Covid guidelines, which allow limited visiting, at a distance, are designed to keep this vulnerable community safe. But the flipside is families being kept apart from their loved ones, unable to do anything to counter their decline.

Image copyright Family handout

Image caption Julia Hailes with her mother, Minker: "It felt like I'd lost her"

Julia Hailes, a writer who lives in Dorset, has struggled to remain in meaningful contact with her 90-year-old mother, Minker. Minker's worsening dementia meant her move to a care home was, at first, a lifeline for her family. But the pandemic has changed everything. 

"Before lockdown I would visit mum and she still knew who I was. I'd go and read her poems, we'd sit and listen to music," says Julia. "Now everyone's being kept in their rooms. It's vital for people with dementia to have structure in their day, so that isolation is in some ways worse than death." 

Video calls often do little for those with dementia. The notion of holding a "moving picture" of a loved one, as they talk, sounds promising. But it can be a hollow, even disturbing experience. 

"Mum's care home introduced FaceTime calls, which I did a few times," says Julia. "But it was horrendous. What good is that when someone is in such a confused state? Part of how I connect with her is holding her hand and giving her a kiss. Weeks later I was eventually allowed to visit Mum in the garden. By that point it felt like I'd lost her - she wasn't even able to speak anymore."

Image copyright Family handout

Image caption Tom Brada, and his grandad Martin

Dr Hilda Hayo, of the charity Dementia UK, says for people with dementia, technology is no match for human interaction. 

"Physical contact is such an essential tool in looking after someone with dementia. If someone is agitated, stroking their hands or putting your arm around them can be really helpful. So, for families, not being able to do that is really damaging." 

This resonates with my own grandad's experience. Video calls left him more confused than when we'd begun; he could scarcely focus on the screen and struggled to understand where our voices were coming from. The only thing which seemed to cut through was the repetition of a simple message, "I love you, Martin". To which he could still reflexively respond, "I love you too, Bubala." 

By the time his home was able to permit visitors, his stark decline was clear to my granny. Sunken-cheeked and unable to speak - he was barely recognisable as the man who had left their home just six weeks before. 

The dementia of Philippa Thomson's mother, Marjorie, is so advanced Philippa knew better than to attempt a video call. Before lockdown her in-person visits to the care home would have a restorative effect on her mother. 

"We would do relaxing things like colouring in or simple jigsaw puzzles," she says. "I would sit and hold her hand, or brush her hair. And over two-and-a-half to three days, I would see her coming alive." 

Government guidelines in England only allow for one person to visit each resident indoors; two if it's outside. But with two older sisters, Philippa has recently been unable to see her mother. 

"The carers are amazing, but no matter how good they are, they can't offer that same intimacy or affection. I do feel a huge amount of guilt and frustration. My mother is 97 years old and it's not any kind of life that she's got."

Image copyright Mark Harvey

Image caption Donna Pierpoint, care home manager

Care homes have borne immense pressures over the past few months. Aware of the burden on both the residents and their families, many made great efforts to maintain a thread of communication. Donna Pierpoint, the manager of a nursing home in Sheffield, described her role in restricting family visits as being "a cross between a prison governor and a headteacher". 

In the meantime she's focused the home's efforts on keeping residents as well looked after as possible.

"If someone is being isolated in their room then, you've got to take the stimulation to them," says Ms Pierpoint. "Our staff will go to their rooms and read letters from their family, go through old photographs." 

She sends out a weekly email to keep relatives in the loop and uses social media. 

"We post pictures on Twitter, Facebook and Instagram. We celebrated VE-Day on May 8th. We had a wonderful day and posted pictures so our residents' families could see we were having a good time."

On 1 August my grandad died at his care home. The majority of his 92 years were happy ones, but his final months were not. The home came to the rescue for my family at our time of need and looked after my grandad wonderfully in gruelling circumstances. 

But as relatives, there's a lingering guilt that we were unable to provide that support ourselves. We did everything we could to let my grandad know how much he was loved. But we cannot shake the sense that the lack of our loving physical presence may have worsened his decline.

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Coronavirus: 'The care home lockdown sent my senile grandad into spiral of decline'

What Remains When Dementia Makes Everything Else Fade

by  Laury Jeanneret

I said goodbye to my mother in May this year, although of course I had been saying goodbye to her long before the day her body finally caught up with her mind. My long goodbye with mum began 12 years ago, with the prodromal signs of emerging Alzheimer’s disease. She was 50 when it started. I had been noticing for some time that she had become repetitive, that she had started to have anxiety, which is something I had never seen from my mum before.

In 2011, mum told me that she was worried about her memory, she said that she was finding it increasingly difficult to remember things that had happened only moments before. She asked me if I thought she might have Alzheimer’s. Her mother had it, and all her maternal aunts had it, and the family often joked that memory problems only seemed to run down the female line of our family. I knew nothing about dementia then, but I did a little research and found that though it is common, this is usually post the age of 65. At that time, my mum was only 54, so I told her she was worrying about nothing, that it was probably stress, and that it would be highly unusual if she had dementia at her age because it was so rare.

Fast forward three years and I sat in a neurologist’s office with her, holding her hand while the doctor delivered the news that she did indeed have early-onset Alzheimer’s disease. Mum cried and hugged me, but of course she had already known. Mum always knew best.

Eventually the shock wore off and mum, fiercely independent as she was, began to live around her diagnosis. Much like you do in pregnancy, you make adaptations to meet new physical frailties and demands. For years our lives became about Post-it notes and memory aids. And as more of her cognition began to slip away, we coped. We got her a bus pass after she had forgotten where she’d parked for the hundredth time, I batch-cooked on my days off and took Tupperware containers for her with days of the week on, so she didn’t have to cook. We got labeled pill dispensers so she’d remember to take her medication.

Even though we were living upside down and back to front, even though we had switched roles, as mum became the child and I the parent, we thought we were, to some degree, winning. But that is where dementia catches you off guard, for so long mum managed, finding creative ways to live with her memory issues that, ironically, it was almost as if we forgot she had it. Because as a family we adapted, mum’s dementia was the thing we lived around. And that’s the thing, people with dementia find so many ways to live around their deficits, that for so long, though life is altered from what it once was, it is still essentially the same. Until the day that it isn’t. Mum plateaued for so many years, retaining her autonomy, that when the decline came, it floored me. It was as if we were meandering along and then, without warning, we just fell off a cliff.

Eventually the day came that I had to make the decision to put mum in residential care, she had become increasingly impaired to the point it was no longer safe for her to live at home. She had forgotten how to use the shower, her oven had dust on it – she had forgotten how to use it, and most often would forget to eat. I put in a hot meals service to try and navigate this issue, but mum would either be out when they delivered her food, or she would place the foil containers on the side and forget all about them. She would wander constantly and then get lost, she took to withdrawing thousands of pounds from her bank account with her pin number written on the back of the card. I would finish work and have 15 missed calls from her neighbors telling me that she, again, had been brought home by a member of the public, completely disorientated.

The day I took her to the care home I had to lie to get her there, tell her we were just popping to see a friend, and then when the door closed I had to tell her she wouldn’t be leaving with me. It broke my heart, seeing her face, she looked so out of place, at least 20 years the junior of everyone else there, and from there we embarked on a new journey. One that involved 24-hour care, daily medication rounds, and mum becoming utterly lost in the fog of her own mind. And this is what shocked me about Alzheimer’s, because until that point I had just thought people with dementia were a bit forgetful, it didn’t sink in until that point the full horror show that watching a loved one with this cruel, insidious disease actually entailed.

In time mum forgot who I was, and would ask me when I went to see her if I had seen her daughter. Sometimes she’d call me mum, I came to learn that though she had no concept I was her daughter, she did know me to be familiar, and safe. As mum stood on the precipice of the steep descent of final-stage Alzheimer’s she became increasingly fearful and aggressive, she began to hallucinate, she would crawl on her hands and knees under tables in search of the demons only she could see. And she would wander, marching around day and night, in circuits around and around the care home, trying all the doors, babbling to herself. Most often I would spend my visits in tears that I tried not to let her see.

In the months leading up to her death the wandering stopped as she forgot how to walk, and with increased stasis came pressure sores. She could no longer feed herself, and would instead require feeding by staff. It was not just a case of forgetting what certain food were for, she could no longer work out how to eat, having no concept of what a knife or fork was even for. Her word-finding ability became non-existent, words failed her, she no longer knew how to talk, and communication became more and more difficult. Eventually, as her body finally failed her she became bed-bound, and I witnessed Alzheimer’s parting shot, she lost the ability to swallow. And when you can’t swallow, you can’t eat. I had no idea that Alzheimer’s would cause such physical devastation on my vibrant, youthful mum. Why would I? In some ways I am thankful that I didn’t know the destination until I arrived at that place.

My mum died on May 5, 2019. She had just turned 62. I was with her when she exhaled for the final time, telling her I loved her, and that she wasn’t alone. Telling her how proud I was of her, and how brave she had been. I don’t know if she heard me, but I feel like she did, because she was squeezing my hand right until the end. We went the distance together, her and I, from my beginning to her ending, and there was no other place I would have been at that moment, then making sure that my courageous mum left this Earth knowing that she was loved. Alzheimer’s is a rollercoaster, there are surprises at every turn. Things you have no concept that you would ever know, it is the steepest of learning curves, delivering changes and challenges at every turn.

But there is also something else, something that people embarking on this journey need to know. Some things are outside of our cognition — even when memory fails, selfhood remains. That same independent spirit that my mother had when she was well, also manifested in dementia. In the way she marched around the nursing home, in the way she would get cross when the nurses tried to give her personal care, and in the way she would nurse baby dolls with such care and attention. Always, always, mum was a free spirit. Always, she was a mother, and that didn’t stop with the onset of Alzheimer’s, because some things are instinctive. Some things are so deeply engrained into us that they are beyond the realms of mental capacity, or cognitive ability.

People like to pathologize dementia — they talk about how the person “dies” before they are actually dead. And in some ways that is true, the coherent version of the person you knew morphs into someone different. But this different person, the person they become, is still woven together with the essence of who they were. Their core is still there. Having seen my mother through every stage of the condition which eventually claimed her life, I know for certain that her selfhood remained. Even when words failed her. Even when mobility was lost. Even when the world made less and less sense to her. She was still Jacquelyn. Still mum. Brave, fiery, resilient mum. Before mum lost the ability to talk, I was visiting her one day and told her I loved her, she whispered back, “Me love you too. You’re my little girl.” And that is what is left when all else begins to fade. Love. Love is what remains.

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What Remains When Dementia Makes Everything Else Fade

Sex and dementia: the intimate minefield of consent in a care home

Training care workers can help break the taboo about sexual relationships between residents

‘While sexuality and sexual intimacy may change with age – and dementia – they do not disappear, and positive physical relationships are good for mental health and wellbeing.’ Photograph: ImagesBazaar/Getty Images

Frank and Mary loved each other’s company. They would sit together and hold hands. Both had dementia and were living in a care home. Their closeness made them happy and their families were delighted.

Mary wasn’t bothered when Frank called her by his wife’s name, nor that he began to intervene in her day-to-day life. They were besotted. He started sitting her on his knee, and, after a few drinks, they could be found canoodling in the corner.

This is not a fictional scenario. It is a story told by a care home worker that touches on a taboo about dementia and sex. It is now well established that while sexuality and sexual intimacy may change with age – and dementia – they do not disappear, and positive physical relationships are good for mental health and wellbeing. With the numbers of people with dementia expected to soar from 850,000 (40,000 of them under 65) to more than one million by 2025 , the issue can no longer be allowed to hide in the shadows, campaigners argue.

“There isn’t much empirical evidence – and some care groups are more ready to talk about it than others,” says Colin Capper, head of research development at the Alzheimer’s Society, “but our experience is that this is a commonplace issue for care homes”. As a result, it recently launched “Lift the Lid” – a resource box aimed at encouraging discussion among care workers. The Care Quality Commission (CQC), which regulates residential care and the Royal College of Nursing (RCN) have both released guidance in the last year.

No guidelines can, however, make this a simple matter, admits Dawne Garrett, the RCN professional lead on older people and dementia care (whose PhD was on sexual intimacy in older people). Consent can be complex at the best of times; never mind the uncertainties of dementia. “Legally, it’s a nightmare,” says Garrett. On the one hand, you have an adult’s human right to choose their relationships and continue to be sexual if they wish (and this includes the right to make “bad” decisions). On the other, there’s the need to ensure sexual activity is consensual and protect vulnerable people from abuse.

The core problem, says Alex Ruck Keene, a barrister specialising in mental capacity, is the clash between these “two competing policy goals – both absolutely laudable and absolutely incompatible”.

The law is, in one sense, very clear: sexual activity (a broad term that can cover everything from intercourse to kissing) requires consent. This involves being able to understand what you are consenting to and communicating this at the relevant moment. Sexual relations are explicitly excluded from the best interests test so nobody – not even with legal power of attorney – can consent for you.

“None of us would want a world in which consent is not essential,” says Ruck Keene. “Imagine what could happen in a dodgy care home.”

But he adds: “This does mean the law can be very harsh.” If you’ve been married for 50 years, for instance, then one of you gets dementia and is deemed not to have capacity, continuing a sexual relationship makes the healthy partner technically a sex offender, he points out. But, if both partners lack capacity, they are legally safe, though an enabling care home worker could still find themselves in breach of the Sexual Offences Act 2003.

The public nature of life in a care home adds another layer of complexity to this normally private matter, says Esther Wiskerke, who trains care home staff about dementia and sexuality. Sexual attitudes are deeply, culturally and religiously ingrained and a simple (totally unsexual) touching exercise between participants in one of her training sessions in a care home in Kent quickly reveals personal differences. Care workers need to be very conscious of their own beliefs to ensure they don’t affect residents, says Wiskerke. “Whether someone can carry on a relationship should not depend on who is on shift.”

Everyone who is attending her training session, hosted by family-run Hallmark Care Homes, has first-hand experience and stories ricochet about the room. Many include the difficulty of dealing with the residents’ families – usually their children (rarely the best people to consult about a person’s sexuality) who are frequently also paying the bills. Some carers feel they have to take relatives’ views very seriously, others say, “it isn’t about them – it’s about the resident”. One carer says she is (unusually, she adds) about to take a resident out to buy a vibrator and that, no, she will not be mentioning this to the woman’s daughter.

In the case of Frank and Mary, their adult offspring found their parents’ increasingly intimate relationship disturbing. A meeting was called and the decision made to separate them – moving him to another floor.

“It destroyed her,” Millie, then a young care worker at the home, tells the other participants. “She became really challenging. It was so cruel. We had no idea how to handle it. There was no training, no support. We failed them. It was awful, awful for everyone.”

So how can older people with dementia be allowed to have relationships without weakening the law that protects them?

First, says Ruck Keene, we need to bear in mind that, “the [legal] bar for capacity to consent to sexual relations is deliberately set quite low”. Nobody wants to “barge in and interfere” if it isn’t necessary, and mental capacity is specific to each behaviour so just because you can’t handle your own bank account or run your own bath, doesn’t mean you can’t consent to sexual relations.

The CQC guidance is clear: people with dementia “can, and do consent to sexual relations” and care homes will now be judged on allowing and – in the right circumstances - supporting them to do so.

Care home staff do have to be vigilant and notice non-verbal signs of discomfort, says Wiskerke. If in doubt, she adds, it’s time to call in the multi-disciplinary team to assess and collectively decide what is best. “Managers need to have big shoulders and not be too risk-averse,” says Ruck Keene. “It is clearly not in the public interest for the Crown Prosecution Service to prosecute in the case of a loving relationship where nobody believes there is any problem, even though it is technically breaking the law.” But the fear that this could happen may distort how institutions treat their residents. CPS guidelines of the type recently produced for deciding when to prosecute in assisted dying, could be helpful, he suggests. But there are no plans for such guidance yet.

Ruck Keene is involved in a project exploring whether the law should be changed to enable a person with deteriorating cognitive ability who is in a long-term relationship, to provide some kind of conditional advance consent to intimacy with the existing partner. He admits it is not proving easy.
While the legal situation may be far from perfect, the only way forward is to break open this taboo and talk honestly, discuss, train, share best practice, and take each case on its merits, mapping the best path through this intimate minefield.

Some names have been changed

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Sex and dementia: the intimate minefield of consent in a care home

ACLU Threatens to Sue Nursing Home for Refusing to Help Patients Kill Themselves

A retirement home connected to the Catholic Church is being threatened with legal action for not allowing its patients to commit suicide under Hawaii’s new assisted suicide law.

Though there are social service programs and 24-hour hotlines dedicated to preventing healthy, young people from committing suicide, there is a growing movement in America to push suicide on those who are old or sick. They euphemistically call it “aid in dying,” though people do not have to be dying to qualify for assisted suicide.

Earlier this year, Hawaii became the sixth state to legalize assisted suicide, joining California, Colorado, Oregon, Vermont and Washington, as well as the District of Columbia. The law is slated to go into effect in January.

Those who oppose suicide in all its forms are being targeted by powerful liberal groups.
Last week, the American Civil Liberties Union sent a letter to the Kahala Nui retirement home in Honolulu demanding that it comply with the new anti-life law, the AP reports.

The elderly care home recently notified patients that they will not be allowed to commit assisted suicide there, according to the report. The Catholic Church, which owns the land where the nonprofit elderly care home is located, opposes assisted suicide, euthanasia, abortion and other life-destroying practices.

The ACLU claims that amounts to discrimination.

Here’s more from the report:

Mateo Caballero, the legal director of the ACLU of Hawaii, said the home was discriminating against those who weren’t Catholic and was telling residents they have to conform to the Catholic Church’s teachings.

“I couldn’t think of a more clear violation of the Fair Housing Act and Hawaii’s own anti-discrimination laws,” he said.

Caballero said he’s not aware of another case in which a retirement home prevented its residents from using a medically assisted suicide law.

Caballero said he wants the home to send another note to residents rescinding its May 11 memo and inform residents it was wrong. Caballero said he hopes the ACLU can work with the home on the issue. If not, he said the ACLU would weigh its options, including a potential lawsuit.

A spokesperson for the home said they do not discriminate against patients based on religion, race, sex, color or anything else. Executive Director Wendy Wong said they have asked their legal counsel to look into the ACLU’s demands.

The Hawaii law allows adults with a terminal diagnosis of six months or fewer to ask a doctor for prescription drugs to kill themselves. But the law — and the six others like it in the U.S. — is riddled with loopholes that fail to protect elderly and disabled people from abuse.

Not Dead Yet, a disability rights group that opposes assisted suicide, has documented on-going abuses of assisted suicide laws in Oregon and Washington, the first two states to legalize the deadly procedure. The group said both states prescribe the lethal drugs to people who are not terminally ill nearly every year.

There also are confirmed stories of patients being denied medical treatment coverage and offered assisted suicide drugs instead.

Stephanie Packer, a mother of four struggling with terminal scleroderma, is one of them. The California woman said her state Medicare plan initially refused to pay for her medical treatment but offered to pay for assisted suicide drugs instead. She has lived five years longer than doctors predicted, the National Catholic Register reported in June.

In separate incidents, Oregon cancer patients Barbara Wagner and Randy Stroup also were denied medical treatment by their state health insurance plans and offered doctor-prescribed suicide instead.

Family members also have witnessed their loved ones being pressured to consider suicide instead of medical treatment. Oregon resident Kathryn Judson said doctors tried to pitch assisted suicide to her sick husband while she was out of the room one day. Judson said they switched doctors, and her husband lived for five more years.

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ACLU Threatens to Sue Nursing Home for Refusing to Help Patients Kill Themselves

Man suffering from dementia found hours after walking away from local care home

Pittsburgh, PA — When Thomas Granger was found at a Bloomfield coffee shop Sunday, his grandson, Shawn Granger, said the 88-year-old was confused and unsure of how he got there.

Shawn said his grandfather left his residence at Schenley Gardens four hours earlier. He said a camera on the hotel next door showed him walking out at 7:58 a.m., and that that was the third time in less than two weeks that the staff couldn't find Granger.

"Thomas Granger is free to come and go as needed," said Jason Childers, executive vice president of Blue Harbor Senior Living, the management company for Schenley Gardens. "He is in a personal care apartment."

Childers said Granger does not live in the secure section of the facility, but in light of what happened, he has been placed on 24-hour monitoring while they move him to the memory care section of the home.

Granger's grandson said the staff promised to watch him more closely after the last time he went missing. He said he is currently searching for a new home for his grandfather.

According to the Pennsylvania Department of Human Services, Schenley Gardens is operating under its fourth provisional license after repeated violations that include fire doors that don't latch, internal doors left unlocked, long wait periods for residents in need of assistance and sanitary issues.State records reveal that this is their final provisional license, and if corrections aren't in place by July 4, the facility's license will expire.

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Man suffering from dementia found hours after walking away from local care home