Dementia: a carer’s perspective

Comments: 5

We speak to writer Nicci Gerrard about her father's hospital care, and her campaign – John’s Campaign – that calls for the families and carers of people with dementia to be allowed to remain with them in hospital for as many hours of the day and night as necessary.

Publication:  Insight, Summer 2015

Nikki and John Gerrard
The date of my father’s actual death – the one on the certificate, on the order of service, the day his body was taken away and which we will remember at anniversaries and which would be carved into his gravestone, if he had one – was 9 November 2014.

But for nine months before this, he was like a ghost in his own life, and for those months we had been both tending and caring for him, and at the same time been saying goodbye to him and in some complicated way already mourning him.

My father was 86. For ten years he had had dementia, and so was on a path from which there was no turning back, but he was one of those who lived well with the condition: he lived in his own home with our mother, his wife of 61 years; he was mobile and articulate (he loved to tell stories about his vivid past); he was continent; he loved to walk by the river and work in his beloved garden, naming the birds and the flowers there. It’s true that he could no longer look after his money or make plans or drive or hold on a conversation; his memory was falling away and he increasingly lived in the present or in the far past. We – his children, scattered in different counties and one in Africa – looked after him as best we could, but we would not have called ourselves his carers: we were his sons and daughters. My mother was not his carer, but his wife. In a sense, he was a demonstration of how dementia, a shadow and a blight, need not wreck a life.

He went into hospital for leg ulcers that were not responding to antibiotics and somehow got stuck there (the ulcers were slow to heal, there wasn’t a bed on the rehab ward…). There were visiting hours in the hospital and there was an outbreak of norovirus that meant none of us could get in to see him except for snatched visits. For more than four weeks, he lay in his bed and there was no-one to make sure he ate his food and drank plenty of liquid; no-one to read to him and talk to him and hold his hand and tell him he was safe and loved; no-one to be his advocate, his voice, his memory bank.

How I wish I had known then what I know now. My father came out of hospital slumped in a wheelchair. He was skeletal and incontinent. He could not walk and nor could he speak, only make a mumble of sound. We thought we could bring him back to the life he had loved, but we couldn’t.

Our campaign – John’s Campaign, named in his honour – was born out of this experience. I do not know how much longer my father would have lived if he had not gone into hospital, but I’m certain that the last part of his life was a catastrophe that we could have averted. One in four people in hospital beds have dementia, and hospital staff simply cannot cope with the demands that are placed on them – anyone visiting a ward will see this. Carers should have the right (not the duty; they often need respite) to stay with people with dementia in hospital, just as parents do with their sick children. They should be welcomed, not just because it is an obvious matter of compassion and moral common sense, but because it helps nursing staff as well as patients: nurses can nurse; carers can nurture, be the experts in experience, the cognitive ramp.

And over the brief life of our campaign – just four months – I’ve learnt how many hundreds and thousands of other people have the same story. Spouses and children have told us their own tales of heartbreak, guilt, rage and powerlessness, as well as stories of kindness and excellent practice. But more than that – nurses and doctors and charities have supported and helped us, and some (not all) politicians too. We are – in our tiny, single-issue way – part of a great paradigm shift. Times are changing. For a long time now the focus of health care has been on diagnosis, treatment and cure, but that’s no longer enough in our rapidly-ageing population. Person-centred and relationship-centred care is crucial – a system in which a patient is not just a collection of symptoms, but a person, precious.

Carers (about 700,000 of them, and rising) are the overworked, unpaid, unseen, unsung heroes of our society. They often don’t know they are carers. Out of goodness and love, they tend to people at the end of their lives. Yet hospital doors are often shut on them. The world is often shut on them, so that they are isolated and depressed. Of course, there are multiple practical measures that are urgently needed – increased allowances, changes in hospital policy, integrated health care, a properly funded NHS – but more than this we need to welcome carers, not just in hospitals but in society. People who live with dementia, and those who look after them, should be part of the great flow of life. And actually, that’s what our campaign is about.

This article was originally published in The King's Fund's Insight magazine, summer 2015.

Comments

#543892 pamela ellis
retired
DAUGHTER

My mother dead from neglect by Scarborough Hospital, Yorkshire. Mum was 92 with a good quality of life and interest and very sociable.- I was living with her as she was more needed. 3 days and nights of neglect. 221st March - 24th March 2012. Frist thing they did was lose her teeth so she couldn't eat. I was at her bedside afternoon and evening, in total ignorance of this neglect. Not spoken to by staff. They not bothered to read notes I was living with mum and after death I found messages left on ansafone. I have spent three years researching and only after sending my own investigation report did he Hospital reply.n After death I was told I should have had open hours! I offered my help at mealtimes and told no! After death say record" Eileen desperate to go home" no-one told me. I had asked to take her hom 23rd March told NO! Mum went into hospital with interrmitant chest pain and for observation only. The first two doctors ignored the abnormal ECG and refused Tropinin Test. No explanation given. A new prescription by GP was not checked for compatibilty with other drugs. I was told death unseen and unknown - yet given contradictory stories. At today's date I do not know anything of my mothers last hours. I was lied to at a meeting - told the last time and the last person to see mum alive was at 6.54am when all OBS normal. It was not until I requested from Freedom of Information did I find secreted away a statemement from a night nurse I have suspicions about that she stayed on after her shift to check my mother "sleeping peacerully - arsouable to noise - a colleague found her unresponsive at 8.10am. No explanation gi ven to me. This nurse in all her records reported abysmally - so why this descriptive statement. A 2nd ECG was taken 1.19am on 23rd March - which was unnamed but attributed to mum. The doctor remains unknown yet wrote notes by omitted to mention ECG. Two Doctors refused to sign death Certificate yet another Consultant overrode their decision. No-one told me this before the Post Mortem. I did not find out until after 4 times of asking for Records received October 2012. No SIR done. No Investigation by C.I.O despite her knowing of these irregularities. The Coroners Report does not reflect any of this and says a natural death. No toxicology test done on a PEA death. No-one bothered to est time of death, yet it occurred in this 20minutes. Told death was 8.30am when CPR stops, Swelling of feet and abdomen ignored yet oedema could have happened due to incompatibility of new prescription. I learned Mum woke at nights distressed often with a chest pain, she was told to go to sleep and no doubt admonished when she couldn't. The list of neglect in three days is criminal. Neglect after deathj - no offices done for a few hours, left on the bed with her mouth wide open. I have been treated with contempt - at the last meeting, still not getting answers, told "we have admitted neglect from the outset""we have apologied" "what more do you want"?

#543955 Terry
Member of the public

A very very sad story by Pamela Ellis - made even worse by the fact that such reports are growing.
As a nation, and carer, we must stop automatically putting on our rose coloured spectacles whenever we talk about the NHS. Of course there are excellent practitioners and staff but this type of behaviour is still being reported. These are human beings we are talking about, those that the NHS is charged and paid to care for and manage.
We are told for instance that there are consultants who, because of their belief in their superior knowledge, are not willing to embrace new technologies and allowed to continue as such - no one will stand up to them. What type of leader and manager is the NHS recruiting on our behalf?
I think the proliferation and frequency of such reports seems to answer the question.
Its not all about more money, its about doing what you do much better.

#543958 Lucia
Former Carer

Nicci where have you been? There are 6.5 million unpaid Carers in the UK of which a small proportion look after someone with dementia. Dementia is flavour of the month for politicians but unfortunately unpaid Carers are not, even with the Care Act 2014 not enough financial support is given to unpaid Carers. Nicci, I suggest you contact Carers UK if you wish to make a real difference. I should know as I gave up a lot to care for my father who had vascular dementia and passed away last year. I also have the experience of my father being in hospital for two weeks and if I had not gone in twice a day to feed him he probably would have died sooner.

#543963 Elaine Rodger
NHS Manager/Health consultant
retired

I strongly support John's campaign. There have been many calls for open visiting to patients with dementia on NHS premises recently and hopefully they will bear fruit universally soon. I agree with Lucia that there are many other adult patients who would also benefit. Well managed and supported it would be a win-win arrangement for patients, their carers/families and for hospital staff.
I write having experience of NHS visiting policies over many years. In the 1970s, children and their families got the right to stay together 24/7 in hospital, with facilities and support to make this possible. Fortunately there have been no U-turns on this. By contrast, on adult wards the open visiting of the 1990s has been widely replaced by very restrictive regimes.
My mother lives with dementia in a nursing home where she benefits from familiar surroundings and staff. There is open access at all times for her family, and good communications between us and the staff. I sincerely hope that the staff continue to be able to manage her in that environment through to what we all hope will be a peaceful end. If she needs hospital, I hope that John's campaign has succeeded in her local hospitals to enable her family to be with her.

#543964 Clive Noak
Director
Protelhealth Limited

Our independent website (www.telmenow.com) was borne out of many of the frustrations described by Nicci, for example:

• What technology is available to help support us as a family and how do I find out about it?
• Where do I get this technology from?
• How do I buy it and what does it cost?
• How would I get it installed when I live away from my parents?

The fact that Nicci’s brothers and sisters were spread around the world should not, and need not, have been a barrier to helping support their father with his illness and their mother with her carer role.

The fact that the hospital was shut to visitors due to a norovirus outbreak should not have been a barrier to their ability to contact and communicate with their father even if they could not do it in person.

We cannot expect Hospital and Community Specialists (Consultants, Nurses, GP’s, Occupational Therapists, Pharmacists, Social Services) to be the font of all new technology knowledge and solutions pertinent to independent living as this is not their area of expertise; plus it changes so quickly that it would be unrealistic for us to ever suggest that they could be up-to-date with all new solutions.

However, Nicci states that Person-centred and relationship-centred care is crucial, which no one would disagree with but where could she have gone to find out what technology is available to help her and her family in their quest to better support their father?

I’m not saying it’s a total answer but a start would now be www.telmenow.com because if what you need is not there then let us know and we’ll do our utmost to source it for you.

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