I’m delighted to welcome author, Judith Barrow, onto the blog today. This is the second time she has visited – you can read my interview with her a couple of years ago here.

Judith’s new novel, The Memory, is a tragic story of love and duty, betrayal and loss, based around a woman caring for her mother who has dementia. As someone whose own mother had dementia, I understand the terrible toll this has on a family – and on the individual concerned – as they realise what is happening to them but are powerless to prevent it, so I asked Judith to tell us about what inspired her to write the book. Here’s what she said:

Identifying the beginning of any form of dementia in different people, especially relatives, can be difficult. Sometimes one is too close to the person to see what is happening. Auntie Olive had lived with us for twenty years and it took me almost a year before I realised the extent of the trouble she had remembering everyday events. It became a real problem for her. She was a quiet woman and, though there was a connecting door between us and the apartment next door, my aunt lived a self-contained life.

She came to us shortly after my grandmother had died. They’d always lived together, going all over the country with my aunt’s promotions in the Civil Service. The death of her mother affected her badly and she suffered from depression for a while. But, being with us seemed to cheer her and, being the calmest of women, she kept me going when our three children, all under five, ran the gamut of childhood illnesses at the same time. Gradually she adapted to living in Pembrokeshire and although she made few friends, she enjoyed walking alone on the coastal path and travelling around in her little gold Metro.

One day, some years later, she announced that she’d been contacted by the people who looked after her aunt, my grandmother’s sister, in the warden-controlled flat in Morecambe. Auntie Lily had been behaving in “an odd manner”, they said, and they were unwilling to have her there any longer. She had grandchildren but they were reluctant to take care of her, so Auntie Olive was going to collect her and bring her to Pembrokeshire in order to find a care home near us. It didn’t happen; we hadn’t the heart to let her go into a home.

Physically robust but increasing forgetful, Auntie Lily lived with us for twelve years. It wasn’t always easy; although small, she was a strong woman with an equally strong will. A month after she came to us, she discovered a bank statement that showed her money had been transferred from the bank in Lancashire to a local branch. She accused Auntie Olive of stealing her money and refused to speak to her. We took her to the bank so that they could explain; she also accused them of stealing her money. Auntie Olive had to go through the rigmarole of applying for a Court of Protection Order, to keep all receipts for anything she bought for Lily and to submit annual accounts to show how she’d used her money. It was stressful for her. (One reason I would urge anyone who suspects they may have problems with their memory down the line, to appoint a trusted Power of Attorney).

It became increasingly difficult. The small incidents mounted up into a huge problem we managed day by day. Once, we discovered why she’d slept all day: she’d raided the cupboard where Olive kept her emergency brandy (don’t ask!) and emptied the lot. She regularly refused to eat during the day and then demanded food in the night. She often wandered off. At first it was with determination to go back to Morecambe, (two hundred miles up country but there was no way she understood that). As the disease progressed, it was to “go to see the Queen for afternoon tea”. The last sounds funny, I know. It wasn’t. Driving around the village and the countryside was frightening. How she managed to get as far as she did, sometimes, we never knew. And, always, she was crying, so we were all upset.

Eventually Auntie Olive admitted she wasn’t coping. There were nights when Lily didn’t sleep. So Olive didn’t. Sometimes I would go into the apartment to find Olive asleep with her head on the kitchen table, and Lily fast asleep in her bed. With the support of my husband, I took on the role of unofficial joint carer. We juggled a timetable between us. Sometimes it worked, sometimes none of us slept. Occasionally I found myself cooking a meal at one o’clock in the morning because she’d refused food all the previous day and was loudly demanding a meal.

The summers were a little easier. Lily loved the sun and would sit out for hours wearing any one of her hats she’d take a fancy to. Mostly they were elaborate creations she’d bought at a time when it was her obsession to go to the local church to watch random weddings. I often wondered if that was the beginning of her illness. She thought my husband was the gardener, and in summer would follow him around, giving him orders on what she thought needed doing. Each time she would present him with a fifty-pence coin that we put back into her purse for the routine to be carried out again the next day.

Finding the humour in the chaos of living with someone with dementia sometimes outweighed the sadness. And we were four generations under one roof; looking back, I don’t believe it did the children any harm. Indeed I think it taught them empathy.

The day came when Lily was physically violent. Auntie Olive’s arms were constantly covered in bruises through being pinched .There had been many times in the past when she shouted and swore. But this was new to us. And we knew we had to do something about it. We searched the area for care homes. Eventually we found one that we all agreed would be the best for Lily. Although I didn’t know it at the time, this was a foreshadowing of things to come; it wouldn’t be the first time I had to do this.

Much of the background of The Memory is taken from my own memories of this time. I hope the love shines through the text as much as the stress of looking after someone suffering through dementia.

Find out more about Judith and her books On her website,  on her blog or via her Amazon Page and you can connect with her on Twitter and Facebook