Diary of a desperate daughter

Juliet Farmer, 80, was diagnosed with vascular dementia in 2003. These are extracts from the diary her eldest daughter, Jeannie, has kept since the day Juliet urged her to dig up some mint that had taken over her flowerbeds. An hour later, Juliet said she needed mint plants. When Jeannie said she had loads already, Juliet was incredulous. Juliet could still look after herself, but this was more than elderly forgetfulness.

25 March 2003

Mum is afraid to go out and has locked herself out several times. I rang the GP and arranged for a full medical assessment. The GP said, "Your mother's losing it, she is rambling and forgetful." Says she must see a consultant geriatrician and possibly shouldn't be alone; thinks Mum is unable to remember whether she has eaten and needs meals on wheels. I don't think she is at that stage yet.

17 April

The community psychogeriatric nurse (CPN) visited Mum. He was nice - said she has "cognitive problems", and must see a consultant psychogeriatrician and someone should have enduring power of attorney over her financial affairs. He suggested she join a day centre. I can't see Mum doing that: she's not a bingo person. She admitted feeling lonely; in the next breath said she had lots of friends ... Appointment with consultant will be in May.

11 June

We got the results of the consultation with the psychogeriatrician. Mum has suffered a stroke and possibly several "mini" strokes. It's likely she'll have more. She won't get better. In three years she won't be able to live alone - we were told to consider a residential home. Social services just recommend care agencies: Mum's assets are over the threshold. They suggested selling her house to pay for a residential home. We started a rota to see her more often and persuaded her to stop driving.

The four siblings muddled along for the next 18 months, visiting regularly. At first, they assumed social services would help, but soon discovered that, as Juliet's assets total more than £21,000, she doesn't qualify for support. Jeannie considered looking after her mother full time, but discovered the allowance for that would be only £45 a week, which wasn't viable. They tried paying for care, provided cheaply by Age Concern, but Juliet didn't like the carer and insisted on independence. She could just about look after herself as long as neighbours and family were vigilant.

January 10 2005

Mum isn't eating. I ask social services for meals on wheels, saying we'll pay. I get a letter: they "do not deliver to those who are active and fairly independent"; go to a private company, they say. I stock Mum's fridge regularly.

March 30

Her next-door neighbour called me - Mum isn't eating. I spent a couple of days with her. She said: "A man is living in the spare room and some children have stolen towels and money." She had 20 new cake tins; says she likes baking - hasn't baked for years. Desperate attempts to be normal. She laid the table for three, saying the third place was for my father [he died in 1984]. She contracted a urine infection and needed antibiotics but refused to take them. She needs full-time care.

April 5

A social worker confirmed Mum needs the care but won't meet the financial criteria. She qualifies for £68 a week non-means-tested attendance allowance. Social worker gave me a list of agencies and the name of a delivery service for microwave meals. We found a woman to come in daily to microwave meals and get Mum to take her antibiotics. Weekends are down to us.

August 1

Mum's neighbours ring. She visited them asking if they had seen my father. They took her home but made it clear that we must get more help. We've arranged for agency care - £150 a day, £175 at weekends. Every two days a different person comes; Mum doesn't know why they're there. Two talked to her, the others just heated up the meals and watched television. Meanwhile, Mum's pension - £12,000 - doesn't begin to cover their wages, and her savings - £40,000 - are disappearing fast.

September 19

Mum is frightened, and has another urine infection. I am trying to cope with work and life and the one-and-a-half-hour drive to Mum's. I don't like the carers. Mum is pale, thin and increasingly immobile (arthritic hip). Advertised for live-in carer. Big response but how do we know qualifications are genuine? Frantic, I keep ringing social services, Age Concern and Help the Aged. They send booklets and recommend websites. Categories of eligibility for all the different care and health options are incomprehensible.

Jeannie found Trinity Home Care, an agency that introduces live-in carers to families. Level one care - companionship - costs £470 a week. Marie, a young Australian, engaged immediately with Juliet, cooked for her and made her a "memory book". Juliet put on weight, laughed again and stopped seeing strangers in her bedroom. Things were stable until this January.

January 18 2006

Carer phoned. Mum went numb and blacked out. She had diarrhoea and locked herself in the toilet. Mum temporarily incontinent. We need 24-hour, level two carers. She's not sleeping. The GP said: "Time to put her in a home."

January 24

My constant calls to social services since October have resulted in the CPN doing a new health-needs assessment of Mum. Level two carers - Lucy and Janine - are going to cost £1,000 a week. Mum's savings won't last long.

February 4

Crisis. Lucy rang: Mum chucked a plate of food at her, threw photos out of the window, ran across the street carrying a knife that she dropped before going into a pub and telling everybody someone was trying to cut her into pieces. A neighbour and my brother, who lives nearby, settled her down. I arrived the next day. Mum was extremely agitated. We would get her to bed and later she'd appear with her coat on and her bag filled with things to give a friend for safe-keeping: the television remote control and six pairs of tights.

February 6

The GP prescribed sleeping pills over the phone. They didn't work. She visited, spoke to the consultant psychogeriatrician, who prescribed stronger sedatives.

February 9

Mum restless, aggressive and sleepless. The consultant psychogeriatrician, who has never actually seen Mum, said to up the sedative dose. No mention of side-effects. I had to sleep with Mum to calm her. I found out that her drugs are antipsychotic, the "chemical cosh"; told the carers to watch for side-effects mentioned on the Alzheimer's Society website. The GP referred me to a nearby care home. It was soulless and smelled of wee, the patient to staff ratio was 10 to one. In another home, it was very quiet because, a nurse said, the talkative dementia patients were shut in their rooms so they didn't disturb the others. We are not taking my mother from her home of 50 years to this mausoleum. But Mum needs more constant, consistent care. If left alone, she makes sandwiches out of cat food and puts plastic bowls on the gas. She can't wash unaided, takes three hours to get dressed and someone has to be there in case she falls.

It was at this point that, by chance, Jeannie found out about NHS-Funded Continuing Care. To her amazement, none of the authorities she had spoken to had mentioned it. If Juliet is eligible, the NHS will cover her care costs even if she stays in her own home. It isn't means-tested but assessed according to health needs, whether mental or physical. Desperate for help, Jeannie again rang social services. When Jeannie mentioned her mother's right to be assessed for continuing care, she was transferred to a senior manager who looked at Juliet's file and promised to get in touch. Jeannie asked when that would be. "We're busy: months not weeks," was the reply.

February 10

A friend says only pressure on the primary care trust (PCT) will get us continuing care. I ring them. The receptionist says, "You need to speak to Eashing." I say, "Who's Eashing?" She replies, "It's a place." I ask what happens there. She doesn't know. I'm getting the screaming jimjams. I ask for the chief executive's office in an important tone of voice and someone suggests I talk to the head of mental health for Mum's area. I telephone her. She will look at the case. Assertiveness gets results.

February 13

A senior social services manager rings, asks intelligent questions and remarks: "You seem to know a lot about continuing care." She will visit Mum at 3pm on March 9.

March 9

Nobody arrives. I phone the office, the woman is sick. No one thought to tell us. I am furious. The head of social services apologises and sends two social workers who arrive with Mum's notes, but are unsure why they're there. I ask to see the notes of the CPN's health-needs assessment done in January. The boxes beside: "Does the patient have pain, sleeping problems, hallucinations?" are marked no. Mum has insomnia, arthritis so bad she can barely walk and needs a wheelchair, and hallucinations - she imagines that it's the war and she is being bombed. There are other errors. They will arrange another assessment.

April 18

The CPN returns to reassess, unhappy about criticisms of her original report. She asks my mother many questions, including would she like to go into a residential home? Mum looks terrified and later tells me she would like to "walk into the river".

April 21

A senior social worker and someone from the NHS mental health team assessed Mum for continuing care. They are sensitive. They spend two hours alone with Mum and meet my brother and me afterwards. They said Mum knew the month, season and day of the week. We were amazed; she doesn't usually. Do they take into account the good day, bad day syndrome? They say Mum is "borderline" for qualifying for continuing care.

May 8

I have heard nothing, so ring the man from mental health who assessed Mum. He sounds embarrassed. He says Mum doesn't qualify for continuing care but is "at the high end for registered nursing care, £130 a week". [It later emerges that this only applies to people in residential care.] He is sorry. I am too. I ask to see a copy of the criteria, his notes and details of appeals procedures.

May 19

I get an email from the PCT: they are sending the relevant paperwork and details about appealing. Copy of senior social services care manager's assessment arrives. I find it shockingly sketchy, full of typos and mistakes - minor details but how many other errors have been made?

May 20

Mum qualifies as a day patient at a specialist dementia home, free of charge. The staff are kind and friendly. It will be good for Mum to meet new people, but the community bus service can't meet the times. A specialist taxi is £60 a day - we can't afford it.

June 2

Letter arrives from the NHS team with the reasons for rejecting the funding - Mum's needs are not sufficiently "complex, intense or unpredictable". How complex, intense and unpredictable must they be? Mum can't walk unaided, can't wash or dress herself or take her medication, has to be coaxed to eat, can't sleep, has hallucinations, bouts of incontinence. She can't be left alone as she might throw something into the fire or fall. I've heard of people so desperate that they take elderly relatives to A&E and walk away. I wouldn't do that, but I understand why it happens.

When Mum's savings are gone we can mortgage the house to pay the £1,000-a-week care bill. The £200,000 will last less than four years; people with dementia can live a lot longer than that. Social services will pay for her care when the money has gone but only for residential care. I fear that in a home, Mum's quality of life and her health would deteriorate. However good a home is, there will never be one-to-one care, which is what people with dementia need. Mum worked hard bringing up four children and working as a teacher in a state school, always paying tax and national insurance. She shouldn't be forced to leave her home and spend her final years in a strange place. This is taking all my energy but I'll continue to fight so my mother can spend the last years of her life peacefully at home.

June 9

I have heard from social services, and to my delight and surprise it seems they are on my side and may be able to help with the appeal for continuing care for Mum. Shows that you have to be prepared to make a nuisance of yourself.

Names have been changed. For more information, contact Age Concern (www.ace.org.uk); Help the Aged (www.helptheaged.org.uk) or the Alzheimer's Society (www.alzheimers.org.uk).

What they'd rather you didn't know

NHS-Funded Continuing Care is for people who have an illness or health condition that means they need regular care from a nurse. At the moment, many people who might be eligible don't apply for it because they don't know about it. The criteria for receiving the funding varies between individual NHS trusts, but if you or your relative have a complex, changeable or intense illness or health condition you could be eligible for support in a nursing home, a residential care home, hospital, hospice, or from a nurse in your own home - in which case, all your treatment and accommodation costs are paid for by the NHS. To find out if you are eligible, contact the consultant or doctor who is leading your treatment, and ask to see the criteria and have an assessment.

For further information, call Counsel and Care's advice line: 0845 300 7585