Nursing Times Award Winner

So emotional. So important

How often do you hear someone say that they don’t visit their mum or grandfather because: ‘They don’t even know who I am, so what’s the point?’

But there is a point, and it’s one we should be shouting from the rooftops. The truth about dementia is this: although people living with the condition may have lost much of their memory, especially their short-term memory, they still inhabit a world of feelings and emotions. As cognitive function falters, emotions become everything. If you can bring a little cheer, that warm feeling will last for hours or even days. On the flip side, a sense of hopelessness and anxiety can also get stuck, and become the sum total of their experience.

My mother died in 2012. For the last two years of her life, following a major brain haemorrhage, she had virtually no control over her speech or movement. She spent most of her days sitting silently in bed or in a chair.

She also had dementia. Whenever I could, I would take her out of hospital for short periods so that she could spend a few hours with me sitting by the river or in the local park. These visits had a profound effect on her. Passers-by were kind and some would stop to chat, touched by her sad situation. Sometimes we'd be joined by friends and end up at a cafe where Mum, with a lot of help, could slowly enjoy a cup of coffee and tiny pieces of cake.

When I took her back to the ward, I tried to make the staff understand that she would not remember details of the outing, so asking her where she had been, or if she’d had a nice time simply stressed her. This was mainly because she couldn't speak, but also because she didn't recall any of the events. She just knew she felt happy- or at least she did until she was made to feel anxious by being asked questions she could not answer, because she couldn't remember. No one meant to be unkind by asking her those questions, they just didn’t think about the implications of having no short-term memory.

So if she didn't remember the lovely afternoon, or talk about it, why did I bother to take her out? Some of my friends thought I was wasting my time. They knew about her memory problems. They also knew that many people with dementia have gone back in time to a younger age, which means they can’t recognise their own family members – if you believe you are in your 50s, how can the 50 year old woman in front of you be your own daughter?

It was true that my mother had no short-term memory. It was also true that she didn't appear to know me. But that was not a reason not to visit her – because I knew her better than anyone else in the world. I might have been a stranger to her, but I beleive she learned to love me as a dear friend who knew what she enjoyed in life. I knew she had loved to walk by that particular river, and sit in that park. I knew she loved the wild flowers, watching the young children enjoy the playground, and chuckling about the weekend sailors, who hired small boats on the river and then struggled to navigate them. I knew she loved the café, where she liked to sit outside and enjoy tea, with no sugar, in a china cup. Tea that was strong and hot. In short, I knew all the simple but important things that staff often forgot, or didn't have time to do, when she was in hospital. I know she enjoyed those things because I was, whether she knew me or not, a soul mate who would go the extra mile to do the things I knew she loved. And I knew it made a difference because those were the times I saw her truly smile and engage with the life that was going on around her. Away from the hospital, her long term memory enabled her to make a real connection with the outside world.

My mum had a severely damaged short term memory. For over a year before her accident, she could not remember events that had happened even a few minutes ago. She might pretend she did remember, to avoid embarrassment, in the same way as we might pretend we remember someone we meet at a party who claims to have met us before. "Of course," we say enthusiastically, "How are you?" – yet, in reality, we have no recollection of any previous encounter. Whether we have dementia or not, there is a stigma to losing your memory. Whatever our situation, most of us can recall moments when we have lied about the things we have forgotten.

And intelligence and memory loss are not the same. Mum wasn't stupid. She might not remember a recent event but she could still beat any of us at Scrabble until the day she fell. She didn't need her short term memory for that; all the words she put on the board were drawn from her long term memory, words she had known from schooldays. If she had played chess or draughts all her life, she would probably have continued to enjoy them because she didn't need to remember where the pieces were. On the other hand bridge, which had given her great pleasure for years, had to be given up. In that game, memory is vital.

The most common forms of dementia rob people of their short-term memory first. Bit by bit, older memories are eroded too, until facts from childhood or teenage years become the easiest to recall. Often people think they are younger than they are. Their earliest memories may be back in the 1980s when they were in their forties or fifties and their children were teenagers. But the important thing to realise is that that this damaged part of their memory only deals with how they recall details and facts; the area of the brain that controls the emotions can still be largely intact. It may be overworking or underworking but, either way, someone with dementia still has very real feelings. Someone who has dementia stil feels happiness, sadness, anger, love and despair. What they need more than anything is for the people around them to love them and create imaginative activities that can keep their long term memories alive.

So, if you think that visiting your mother, father, husband or wife is now a waste of time because they don't remember anything about it afterwards, you are wrong. If your visit is a happy experience, they’ll continue to feel happy long after you have left, in the same way that a piece of good news can keep us cheerful for the rest of the day. Conversely, a visit that was strained or unhappy can leave the person with dementia feeling distraught for a long time afterwards.

However upsetting it is to be with a loved one who doesn't appear to know you, your presence can still be an enormous comfort. You can do so much to help, by telling others the simple things that make them happy: sugar in their tea, music from The Beatles, a favourite television programme from long ago, or eating fish and chips with lashings of vinegar out of newspaper. You know what they love. Likewise, you can remind staff what they hate. My regular visits ensured that the ever-changing staff on the ward knew that Mum hated cauliflower and milky drinks. She loved springtime and the first daffodils, so we fought for her to have a bed near a window when the daffodils were in bloom. It made her smile when she had very little to smile about.

As babies, our parents learned to love and understand us. They knew our limitations and gradually recognised the signs that were hungry, thirsty or in pain. Our particular idiosyncrasies gave them clues to when we needed sleep or simply a cuddle. Our parents learned from others who had been through it before. They joined antenatal and postnatal classes, and read heaps of books and magazine articles so they could be the best possible parent.

Now it's our turn to give back. In many ways, those who care for people with dementia are similar to new parents. Except that in parenthood, the child gradually becomes more independent; that’s your reward for good parenting. In dementia the situation is reversed – and plunging into that new reality can be frightening and depressing. A diagnosis of dementia is hard to accept, but it needn’t be the end of the world, or even the end of your relationship. Having an understanding of the bewildering world that surrounds someone living with dementia, and creating activites that give them an anchor from the past, will improve their life and yours. And it’s so easy to get that help, through organisations like the Alzheimer's Society, whose free training does untold good in breaking down misunderstandings and misinformation. People living with dementia feel lost, bewildered, frightened and alone. More than ever, they need to be surrounded by those who love and understand them.

Jill Fraser

Jill Fraser

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