For Gail Rolfe, dealing with the complex system that deals with the financing of care-home places is almost as harrowing as her father’s dementia
My father has dementia. Nearly eight years after his diagnosis, I have accepted that there will be no miracle wonder drug, no last-minute cure that will free him from this devastatingly cruel, relentless illness.
He is an 83-year-old baby living in a specialist dementia nursing care home. He struggles to communicate, is doubly incontinent and has to be helped to eat and drink. In the past two weeks he has lost the ability to walk or stand. He no longer recognises his wife of 58 years, his 3 children or 5 grandchildren, is unaware of the time or the seasons and can be volatile and aggressive. On rare occasions he can be logical, lucid and very loving. But as I write he is reaching the point where he is losing the ability to swallow and therefore to eat.
Having been forced to take the agonising decision to admit him to the care home last year, naively we believed that our only anguish over the coming years would be witnessing his gradual decline. The home he is in is staffed by wonderfully caring people; the nursing team is diligent; the food is freshly cooked and delicious; his clothes are washed and ironed (something that does not happen in all homes). They do the best they can in difficult circumstances, especially on such low pay.
So, this is not a shocking tale of care-home abuse or neglect. My father seems to be content and settled, and therefore we should be, too. But sadly, that is not true. Instead, the past year has been fraught with despair, as we have battled the demons of care-home funding.
It is painful enough to endure the emotional turmoil and daily rollercoaster of losing a family member to dementia without having to fight a battle with social services and the NHS in a system that is bewildering, and often appears to be inhuman and unsympathetic.
Today, if you have a relative suffering from dementia or Alzheimer’s, you need to be very poor or very wealthy. For the unfortunate squeezed middle, the system is hopeless.
Those who have worked hard all their lives and paid taxes have too much money saved for their care to be funded by their local council or primary care trust, yet not enough in the majority of cases to self-fund when care home fees are about £800 to £1,500 a week. The maths is terrifying: the average yearly bill will be in excess of £50,000. Times that by four, five, six years and the figures are stupefying. How many ordinary families do you know who have that kind of money in a savings account?
This is the scale of the problem: there are approximately 820,000 people in the UK living with some form of dementia, predicted to rise to more than one million people with dementia by 2021; only 44 per cent of people with dementia are diagnosed, which means the true figures are far greater. Some 60,000 deaths are directly attributable to dementia each year and one third of those diagnosed with dementia live in a care home. Staggeringly, the cost of dementia to the UK exceeds £23 billion, whereas the comparative costs for cancer are around £15.8 billion.
While a cancer diagnosis now comes with the possibility of hope, with dementia there is no hope. Cast your mind back to my father’s current state, where he is as helpless as a six-month-old baby, reliant on his carers to provide his every need. And remember his condition is never going to improve. If he had been diagnosed with cancer, or any physical illness that would undeniably prove terminal, would we be facing the same scandalous financial battle to have his care met by the state? There seems to be a deplorable distinction between mental and physical illnesses.
I have read and re-read page after page of advice on the Age UK and Alzheimer’s Society websites until my brain is addled; waded through the “Charges for Residential Accommodation Guide”; read almost every pamphlet provided by the NHS; had several telephone calls and a lengthy meeting with a financial adviser who specialises in care-home funding, spoken to friends in similar situations and I am still baffled. There are just too many “ifs, buts, maybes and possible permutations”, and every single case is different.
We had made the situation even more complicated, because we had admitted my father in an emergency situation to a care home that was outside the jurisdiction of his local borough (he was staying with me in London at the time), and we were funding him privately. Unwittingly, we had bypassed the complex system that rules the entry into care homes and have ever since had to wiggle our way back in and begin the tortuous dealings with his local social services.
This is like playing a game in the dark, where you are unaware of the rules, and the criteria are open to wide interpretation between different health board areas. I cannot remember having to deal with anything that has made me feel so powerless.
As far as I can understand, this is what should happen: the person with dementia is assessed by the community support unit of mental health nurses; if you fulfil the criteria for entry into a care home, three homes will be selected for your relatives to visit, and then they select the one that is preferred.
In the period of time when we were still operating on the fringes of the system and paying privately, my father was rejected as being too aggressive and too difficult by the care home that is closest to my parents’ marital home. Because this was logically the best place for him, their refusal sent us into a tailspin and a frantic viewing marathon of other homes within driving distance for my mother.
The luxury care homes that anyone would be content to live in (while not that much more expensive) don’t accept advanced nursing dementia cases, so they were crossed off the list. We trailed despondently around a further three homes that would accept him, yet I wouldn’t consider any of them even for my worst enemy. The fourth home we looked at turned out to be a gem and that is where my father is still today. We are still paying privately, which brings us to the baffling issue of care-home funding.
The first test you have to pass or fail, according to how you look at it, is the “means test”. The upper savings threshold in England (above which the person has to pay all their costs) is £23,250, while the lower savings threshold in England (below which a person’s savings are no longer taken into account, although all other income including benefits and pensions is still counted) is £14,250.
In a nutshell you have to spend all that hard-earned, taxed income until it is below the magic figure of £23,500. We managed that in less than six months.
The second test, and the one that has caused us such distress, is the lynchpin that determines whether or not a request for fully funded NHS Continuing Healthcare is granted or not. A nursing care assessor and a community mental health nurse carry out lengthy continuing care assessments, together with the family and nursing staff from the home, approximately every three months.
This 54-page document assesses every aspect of the person requiring funding, from cognition, behaviour, psychological and emotional needs, communication and mobility to nutrition, continence, skin, breathing, drug therapies and medication symptom control, altered states of consciousness and other significant needs.
My mother and I have now sat through three exhausting assessment meetings and appeared before the quite formidable Essex Multi-disciplinary Team and Continuing Healthcare Panel (six of them on one side of the table and me and my 81-year-old mother on the other side), and still we are no wiser.
At the end of every meeting we leave more confused than ever. When every single person employed within this field shamefacedly describes the current system as “a minefield” or “a nightmare”, and concedes that even they find the system complex and bewildering, how do we, the uninitiated, begin to understand or navigate the system?
My father both passed and failed the first test in September. His savings were below the higher-level threshold, but above the lower threshold. So we fell in a no man’s land. In a bewildering phone call in the same week, I was told that my father’s income was too high. “What income?” I felt like screaming. He’s been in a care home for the past five months and has had dementia for almost eight years. “Oh, sorry, I mean his pension is too high, his state pension,” came the answer. “Plus the other five private pensions he has,” she concluded.
He also failed the second test. According to the letter I received in December, “The Panel agreed with the MDT (Multi-disciplinary Team) that Mr Rolfe does not have a Primary Health Need but would be eligible for FNC (Funded Nursing Care).
“Having considered the nature, complexity, intensity and predictability of the totality of Mr Rolfe’s healthcare (taking into account any interaction between those needs and the evidence from risk assessments), as at December 12, 2013, the Panel decided that Mr Rolfe’s healthcare needs were of a nature which a local authority could be expected to provide, that his needs were predominantly for personal and social care and that Mr Rolfe did not have a primary health need. Consequently the panel decided that Mr Rolfe was not, as at date of assessment, November 6, eligible for 100 per cent funded NHS Continuing Healthcare.”
Which places us in an impossible situation. My father, if he knew what was going on, would have lost every last vestige of dignity and pride. Consigning him to spend his last years in a care home was difficult; having to almost beg for him to keep his place there is beyond harrowing.
In the first years after diagnosis, my father remained essentially undiminished from the man he had been all his life. He knew he was married, had three children and five grandchildren and remembered all our names. He knew where he lived, the name of the prime minister and could converse coherently on any subject.
But the signs were there. My father would ask for “the thing you read in the morning”, instead of the newspaper, and refer to “the thing you wear on your wrist to tell the time” instead of his watch.
It would be a lie if I said that life was completely normal. There were the times when he behaved eccentrically; whispered conversations about the fact that my mother was having an affair/trying to poison him/being incredibly unkind to him, or just that he was desperate to talk to me about something, but could never remember the topic.
The reality is that these delusions are simply a stage of the illness. Frightening for him, and distressing for us, particularly our mother, who was living with this daily. Try living with someone who, like a toddler, has no concept of time or distance or danger; who can no longer understand the changing seasons and why it’s not time for bed at 3.30pm on a dark winter’s day or who disappears for hours because he still loves walking and being independent. Contemplate the loneliness of living in a house where there is little or no conversation and you are exhausted from being a carer.
With eight years’ hindsight, it is easier to understand how my mother was struggling to come to terms with the fact that the tall, handsome and intelligent man she married in 1955 was slowly but surely vanishing.
The deterioration when it came last April was rapid. For a while, the local Alzheimer’s Association had taken him to a daycare centre twice a week and he spent one morning a week with a kind volunteer in her house. But lack of funds forced the centre to close and then my father’s behaviour made it impossible for him to go anywhere else.
That left my mother, who stands 5ft 2in to his 6ft 3in, as his sole carer, 24 hours a day, 7 days a week. By now it was as though he had regressed to the toddler-like “terrible twos”, wetting the bed twice a night, throwing tantrums, escaping from the house holding grimly on to a selection of obscure “treasures”, disappearing for hours and taking himself to bed at whatever time he chose.
Yet he still possessed phenomenal physical strength, and a recent medical had confirmed he had the stamina of a 50-year-old. But his grasp on life was precarious and my mother’s quality of life as a full-time carer was practically nonexistent. To give my mother a break, I whisked my father to London to stay with us. I had booked a carer, Sarah, for the week, who proved excellent.
I invested in a waterproof bed sheet, various types of incontinence pants and crossed my fingers. In my mind, this was a trial run and if it worked Sarah was going to live with my parents from May onwards.
By some kind of miracle, it worked. He slept through the night wearing his “funny pants”. I woke him in the morning, where he would kick his legs like a baby and smile at me. “Sarah the carer”, as she became known, washed him, shaved and dressed him and brought him down for breakfast where he consumed an enormous bowl of cornflakes, followed by two slices of toast and marmalade finishing with a cup of tea. But it had to be served in that order; there could be no deviation from the routine.
During that week we walked the dogs on Wimbledon Common; we ate out twice and he sat at the table and tried to join the conversation in his own way and his body clock reverted to normal: up at 8.30am, lunch at 1pm, dinner at 8pm and bed at 10pm.
I cherished my week with my father and would love him to have stayed, but it is a 24/7 job, and that week I ignored my partner and my 14-year-old daughter. I am a classic example of the sandwich generation, torn between duty to the past generation and the future one.
A week later, I took him back home to my mother. I stayed for lunch and when I got up to leave my father grabbed his coat and asked to come with me. When I said no, he asked why: “Have I been bad?” The look of consternation and anxiety was palpable. My heart broke. I got back in my car and drove back to London, tears running down my face.
As a family, we were novices in the field of mental illness and the chaos that travels in its wake. Middle class, middle of the road, our very ordinary life had been untouched by contact with the police or social services.
But all that was to change as a result of my father’s illness and the rollercoaster ride that was to become our version of normality.
At the beginning of April last year, his condition was often alarming and challenging, but still manageable. Yet by the middle of that month my father had been sectioned under an s5(2) (part of the 1983 Mental Health Act), and held for two days in an acute mental health unit. My mother, my sister, my brother and I spent more than 12 hours locked in the “quiet” room campaigning to get him released.
Outside, madness reigned. One of the other patients threw herself at the door repeatedly; another, wearing a flimsy nightgown, danced manically to loud pop music, while others schemed about how to escape, clutching their belongings in a bundle. We telephoned doctors, lawyers, and the local Alzheimer’s Society, while pleading with doctors and the senior staff nurse to release my father from this terrifying modern version of a Victorian asylum.
Amazingly, we achieved our goal and after less than 48 hours he was released back into my mother’s care. Two weeks later, he left the house on an unknown mission and had not returned three hours later. The police, who were helpful on this first occasion, changed their attitude on his third escape attempt, when he was discovered three miles away sitting in a stranger’s garden, confused and frightened. Their suggestion was to handcuff him and place him in “protective custody”.
Only the intervention of the house owner, my mother and my sister prevented that from happening. I scooped him up and brought him home to stay with me. That weekend was the start of the next phase where we became fully immersed in the life of the mentally ill.
Three days later, on May 7, I broke the promise my sister and I had made 30 years ago and placed him in a care home. Since then I have run the gamut of emotions from guilt, desperation, rage, frustration to fear, despair and anguish.
For too many people the word dementia conjures up a mental picture of a sweet-natured, white-haired elderly person who is nothing more than forgetful, but my family and the thousands caring for anyone with the disease can testify that the truth can be more frightening than it’s possible to believe.
While Alzheimer’s is the most common and is a progressive physical disease, the lesser known fronto-temporal dementia, which is what my father has, affects the frontal lobes of the brain behind the forehead that control behaviour and emotions and the understanding of words. The damage is the same: nerve cells die, the pathways that connect them change and gradually the brain tissue shrinks. Those affected begin to lose their vocabulary and understanding of what objects are, and their personality, as we were to discover, can undergo a radical transformation.
I have come to envy my friends whose fathers are struck down by heart attacks and die instantly. Their grief is sudden and driven by shock, but knowing what we are going through, none would trade the extra years, to endure the long, drawn-out pain we are suffering.
All we want are simple answers to several straightforward questions: “How ill does my father have to be to qualify to be fully funded? What do we do when my father’s savings have been exhausted? Who is the elusive ‘third party’ the Multi-disciplinary Team and the Continuing Healthcare Panel keep referring to? Will the third party fairy appear and wave her magic wand in time to pay the shortfall?”
As an update on the financial aspect, the council agreed to pay £680 a week, leaving us with a “third party top-up” of £110.21 a week to find. Then came the blow – the payment was backdated to September 25 but expired on January 16. And the money would go straight to the home, whose fees we have already paid.
I reasoned that we would get a few months grace offset against that money when we would not have to pay. The conversation continued and I have to admit that I honestly could not comprehend the maths or the logic. From January 17, it seemed, the council would only pay £472.57, leaving us with a “third party top-up” this time of £317.64.
It is the collusion between some care homes and the councils that is dismaying. Some, and I use this word carefully, some care homes have facilitated “deals” with local councils and agreed preferential lower rates for funded patients. Sadly, the home my father is in does not have that arrangement. However, the home that is within walking distance from my parents’ home, whose weekly rate is even higher than the one he is living in, has the elusive deal with the council. Unfortunately, this is the home that refused to accept my father because of his volatile behaviour. As my daughter would say, “Go figure.”
Then, my father was rushed to hospital because he was unable to eat or drink; it seemed as though he had suffered a mini stroke. If that wasn’t distressing enough, my mother received a bill from the council demanding £6,185.48 for care, calculated as two days per week at £379.81. But hang on, we are privately funded and those bills have been paid. I thought we were going to be credited, not debited.
So, what do you do if your family find themselves facing this situation? With dementia numbers increasing year on year, there is unlikely to be any family in the UK that will remain untouched. As a nation we must take responsibility constantly to challenge this government, or any that succeeds it, to ensure the prime minister’s inspirational words become reality, not just a vote-winning campaign.
There needs to be a complete overhaul of the way care homes are designed and run, with improved facilities for people with dementia to live in. You only have to read about the revolutionary Hogewey Village in the Netherlands, where they have transformed the living environment, treatment and care of people with dementia. So it is possible.
To ease the unnecessary trauma requires someone very powerful and brave to rip up the existing rules about funding, implement a simple and straightforward set of directives and make sure they are followed by every council. No more postcode lottery with each council adapting and implementing its own illogical and incomprehensible funding requirements.
Of course, most importantly, we should undertake to alter our perspective of the elderly, especially those with dementia, who deserve to be treated with dignity and respect, acceptance, understanding and kindness.
My hope for the future is that the precious time any family spends with a loved one suffering from dementia (or any other terminal illness) is dedicated to love and laughter, rather than consumed by financial anguish.
Gail’s father, Raymond Rolfe, sadly died a few weeks after this article was written. Gail and her mother were invited to attend a meeting this week with the West Essex Continuing Healthcare Panel to discuss her late father’s funding. On January 30, 2014, Essex County Council paid £11,074 to the care home but reclaimed the money on April 30. On May 23, the same amount was repaid to the care home. At the time of going to press, neither Gail nor her mother had received a breakdown of what that payment covers