This post has been many months in the gestation. In my head, it started off as a more abstract and metaphysical musing about the nature of dementia, at least as I have encountered it, about how what made a person that person fades, gradually, until it has virtually disappeared, and yet they are still here. As a recent contributor to a discussion in the Guardian described it, ‘death on the installment plan, as every day another little piece would flicker out of existence’. But there are other things that must be said as well – the anger at how our health service and social care – and in particular the failure to join the two up effectively – can fail those rendered helpless by the disintegration of their mind and memory.

The title is borrowed from a series of pieces of 21st century music, by American composer William Basinski, which I have loved ever since a friend introduced me to them a few years after they were released in 2002/03. Basinski had magnetic tapes, recorded in the 1980s, which he wanted to transfer to digital format. But the tapes had deteriorated, so there were gaps, and cracks, which increased as he continued to play the tapes. The original recordings can be heard, but faint, distorted, broken up, fragmented. And somehow this is intensely moving. When I first heard it, I felt the general sadness of loss, of gradual loss in particular, not a sudden shock and wrench but the knowledge that something is slipping away that was and still is precious. And when I saw this happening to someone I loved, that title and the memory of listening to these albums came back to me.

And the idea of loops, of course, resonated with us. The endless loops of conversation: Where am I? You’re in hospital, Mum, you had a stroke. Oh. When can I go home? When you’re stronger. Where am I? round and round again… As the disease progressed the loops got shorter, until all that was left were the questions and our answers disappeared into the fog.

Basinski was not thinking of dementia when he created these pieces. They’re dedicated to the victims of the September 11 attacks in New York, which Basinski saw from the roof of his apartment in Brooklyn, the morning that he had completed the project. But as D H Lawrence said, trust the tale and not the teller. That Basinski associated the work with 9/11 does not prevent it from being also a powerful and poignant and heartbreaking account of a very different kind of loss.

There are as many different experiences of dementia as there are sufferers – and carers. I can only speak of our own, but there are elements in what we experienced that will be shared by many. Over the months since she died we have been gradually able to overlay the images of her the last time we saw her conscious – bewildered, afraid, unable to understand what we were saying to her, unable to smile, unable to recognise the photograph of her beloved little cat that we had brought as a gift – with the woman we had known before. That woman was funny, fiercely independent, interesting and interested, a traveller, a gardener, a musician, a teacher, a fan of detective novels and TV series, a lover of good food and wine. Dementia took all of that, little by little by little, but as we organised her funeral and started to get cards and letters from people who’d known her before, we saw her re-emerge from the shadows, heard the laughter that so many people had mentioned, literally heard her voice on a recording amongst the other members of the choir she sang in for many years.

But as we recovered some of those joyful memories, I thought about some of what had happened in the last year of her life, and I got angry. On her behalf, but also on behalf of the many, many people who suffer from dementia. Many are less fortunate than she was – she had the funds to choose (or for us to choose on her behalf) the kind of care she needed, and to not have to put up with sub-standard care (in fact, the carers who supported her in her own home until her stroke were wonderful, as was the care home that she moved to for the last six months of her life). She had family who were close enough at hand to be involved in her care, who were free to come over at short notice when needed, to spend time on hospital wards to talk to medics on her behalf. But despite all of this, and despite the loving and patient care on the wards from nurses and health care assistants, there was something terribly wrong.

If I could go back, knowing what I know now, I would interject in every discussion about her medical care and about options for discharge, to remind people that, whilst she had been admitted to hospital following a stroke, she had dementia, and that any decision about her care in hospital and about what happened once treatment was over HAD to take account of that. She could not cooperate in her own care. She removed the feeding tube that the hospital had inserted to ensure she did not aspirate and contract pneumonia, because she did not understand why it was there, she only knew it was unpleasant and uncomfortable. She tried (and occasionally succeeded) in removing the surgical collar that was needed after she fell and broke a couple of vertebrae in her neck – again, she did not know why she was wearing it, blamed the collar for the pain of the fracture. Her carers – at her home and in the care home – took her dementia into account. Staff on the wards largely did (they brought her food even if she’d said she didn’t want any and didn’t rush to take it away when she said she’d finished, understanding that seconds later she’d forget that she’d finished and have another go… ).

But when it came to preparing her for discharge, it was as if the need to free up a bed, once no further medical treatment was required, overrode other considerations. We get it, we really do, we know the NHS is overstretched, we know that hospitals can’t have beds taken up long-term by people for whom they can do nothing more. Nevertheless…

We were told how much her mobility was improving, and that with extra help for a while (equipment and additional carers) she would be fine at home. And so she was discharged. We were given a date for discharge, and a time, so planned to get there (we’re an hour’s drive away) well ahead, to sort the house out and get her shopping done.  But she was delivered home much earlier and so we arrived to find her sitting, bewildered, on the sofa (where we knew and her carers knew not to let her sit, because it was so difficult to get her up from it). She had no idea how long she’d been there. We quickly realised that we, and she, were in a nightmare. We were as terrified as she was.

She would be alone for most of every day (carers came four times a day). She had forgotten, after a month in hospital, how to use her TV remote and could no longer read. She would be incontinent and thus sitting in her own waste for hours. She would be unable to change her position in the chair or the bed and thus would be at risk of pressure sores. She would be at risk of falling from her chair if she forgot that she could not get up, and tried to do so. She had forgotten how to use her ‘red button’ alarm and so if she fell would lie there until the next carer visit. She would be shouting out for help, hour after hour – she had no sense of the passing of time, and so would be convinced five minutes after a carer had left that she had been alone for hours already.

She had been promised physiotherapy, and the assumption seemed to be that she could learn, and get better at the limited means of mobility possible for her. But since the dementia took hold, she had been unlearning. Unlearning skills she had had for years, like how to dress herself, how to make a cup of tea. Her discharge took no account of this.

When the carers arrived they shared our alarm and dismay and decided that it was an unsafe discharge and that she should go back into hospital. Next day when we rang to see how she was, the nurse on the EAU said brightly how well she’d done on the rotunda and that she’d be ready for discharge soon. We headed straight over and prepared for a fight.

We pointed out that if one of us had had a stroke and lost mobility, and was discharged to live alone, we would of course be worried and miserable. But we could do something about the situation – ensure that books, radio, TV remote were within reach, keep in touch with the world via phone or laptop and talk to family and friends. We could look at the clock and know how long it would be before someone would visit. She had none of those resources.

We argued, we insisted that we could not accept her being sent home. And eventually someone said to us, what do you suggest then? And we said, well, we rather thought you might be able to offer us some advice and guidance on possible solutions. And just like that, we were put in touch with the social worker and the Age Concern contact, and were given details of suitable care homes, and within a few days, were arranging her discharge to a dementia specialist care home.

We’d never promised her that we wouldn’t ‘put her in a home’. But even if we had made that promise, we’d have broken it. What mattered was that she was safe, that someone was there 24 hours a day to take care of her, that they were able to keep her comfortable. And the language of ‘putting’ someone in a home is inherently prejudiced – we found the best care home we could for her, and we worked with the care home manager and staff to meet her needs as well as we could, just as we had worked with the carers who came to her home. We have no regrets about that – only about our naivety in our dealings with the hospital and our failure to remind them at every stage and in every discussion about her dementia.

The other thing that rapidly became apparent to us was that with every hospital admission, the dementia gained ground. This is borne out by statistics from John’s Campaign:

• One third of people with dementia who go into hospital for an unrelated condition NEVER return to their own homes
• 47% of people with dementia who go into hospital are physically less well when they leave than when they went in
• 54% of people with dementia who go into hospital are mentally less well when they leave than when they went in

John’s Campaign‘s raison d’etre is pretty simple – the belief that in all hospital settings, for patients with dementia, ‘carers should not just be allowed but should be welcomed, and that a collaboration between the patients and all connected with them is crucial to their health and their well-being’.

In that grey area, where someone may be deemed to ‘have capacity’ to make decisions, but at the same time is unable to hold on to even simple information, let alone weigh up pros and cons, the family (if the patient is fortunate enough to have family/carers who are able and want to be involved) must be seen, surely, as a tremendous benefit for the hospital.

John’s Campaign applies to all hospital settings: acute, community, mental health and its principles could extend to all other caring institutions where people are living away from those closest to them. In the time since the campaign was founded, over 1000 institutions have pledged support and a lot of progress has been made – but there is a lot yet to be done.

https://johnscampaign.org.uk/#/about

If a patient with dementia has no family to speak for them, to ensure that their dementia is taken into account in all decisions about their medical and social care, how can we provide them with advocates? As Nicci Gerrard said in a recent article, dementia is our collective responsibility. You might not have encountered it yet. But odds are, you will. It’s in all of our interests that we recognise the scale of it, recognise what’s needed to keep people with dementia as safe and as comfortable as possible, that those of us without dementia speak up for those who have it, who can no longer recognise or articulate what they need. They may no longer be able to articulate their needs, or explain the reasons for their anxiety or distress, but the anxiety and distress is no less real for that – and all the more heartbreaking to witness.

A good place to start is in collectively facing up to the fact that it is in our midst and that each year hundreds of thousands of men and women are living with it and dying with it. If not you, someone very near you. If not now, soon.

 

Support, Information, Advice

If dementia is now a part of your life, there are places you can go for support and advice. I’ve already mentioned John’s Campaign. I found the Alzheimer’s Association forum, Dementia Talking Point, very helpful on all sorts of practical issues, and often very reassuring.

Some books that I found both fascinating and useful. Several of them at some point made me laugh, and all of them without exception, at some point made me sob.

• Nicci Gerrard (founder of John’s Campaign) – What Dementia Teaches us about Love
• Andrea Gillies – Keeper: A Book about memory, identity, isolation, Wordsworth and cake… (Andrea Gillies took on the care of her mother-in-law, who was in the middle stages of Alzheimer’s disease. This is a journal interwoven with an investigation of how Alzheimer’s works)
• Emma Healey – Elizabeth is Missing (a wonderful novel, whose protagonist is a woman with dementia, who can’t always recognise her daughter, but knows that her friend Elizabeth is missing…)
• Robyn Hollingworth – My Mad Dad: The Diary of an Unravelling Mind
• Wendy Mitchell – Someone I used to Know (Wendy was diagnosed with early onset dementia some years ago, and writes a truly remarkable blog about her life with the disease. Her experience is very different to that of my mother in law. But it’s a rare and invaluable gift to hear someone explaining so clearly what it’s like have dementia, and a joy to hear of the rich life she can lead even now.)