She’s the UK’s best known vegetarian cook, with more than 60 cookery books to her name and an MBE for services to vegetarian cooking. Here Rose Elliot, 71, reveals how she coped when her husband of 50 years was diagnosed with dementia
Robert was the love of my life. We married when I was 18 and he was 30. We’d just celebrated our 50th wedding anniversary when I realised something was terribly wrong.
Robert had been out running errands in the car when he filled the tank with petrol instead of diesel and, after driving another couple of miles, the engine blew up. I knew nothing of it until he eventually arrived home at around midnight in a breakdown lorry, unable to remember what had happened.
Looking back, Robert had been growing increasingly forgetful for about five years, but I’d put it down to his age. After all, he was 80 and, although he looked twenty years younger and remained physically fit and healthy, (a vegetarian like me) his minor memory lapses hadn’t concerned me. However, losing his wallet was one thing…blowing up the car was something quite different.
It wasn’t long until we were given an explanation for Robert’s behaviour. After a lengthy day of hospital tests, he was given a diagnosis of Lewy Body Dementia. We returned home not really knowing what might happen but I was determined that I would care for him myself.
For the next six months, I managed reasonably well, though Robert couldn’t really cope with anything. Occasionally, he had moments when he realised his memory was going, these flashes of reality were often the hardest part of the whole dementia journey. All I could do was hug him and say, I’m sure it will be alright darling,’ when deep down I wasn’t sure at all.
His appetite pretty much disappeared so I made a decision he was going to have anything he wanted to eat. I gave him wholemeal bread and honey which he loved, and offered tasty bits of finger food, including chocolate, to tempt his appetite. I wanted him to enjoy food and be happy, it seemed he had so little to be happy about anymore.
Robert spent most of the time sitting in a chair watching TV, growing increasingly confused and at times delusional. Sometimes he’d try to go out and, for his own safety, we put locks on the doors and windows. Once, when my back was turned for a few seconds, he managed to slip out and was found nearly a mile away in the village where he’d fallen over and was found by police. It was so scary, but everyone was very kind and sympathetic.
Then one day Robert fell down at home and I couldn’t get him up off the floor. A doctor came and he was taken to hospital where his condition deteriorated rapidly. I was still determined to bring him home and care for him myself, but after a trial run organised by the hospital, it became clear that the lifting involved (Robert was over 6ft tall) was simply too much for me and everyone thought it was impractical for me to even try. Reluctantly, I admitted defeat but threw my energy into finding him a really good high dependency nursing home. My daughters were a great help too which was just as well because we ended up visiting 21 nursing homes - some were very depressing - before we found one that was suitable and able to cope with Robert’s increasing needs.
It was a lovely, bright and spacious home. Robert’s room overlooked the lawn and the care staff were so wonderful they became friends. I visited every day. I wanted to see him, it was no hardship to do it, though it was tough and emotionally and physically exhausting. After visiting, I’d often return home and go to bed.
But I was so blessed that Robert continued to recognise me right until the end and always seemed happy to see me…Even on the day, he died his face lit up when he saw me and the last thing he did was squeeze my hand… I know others aren’t so lucky. My husband passed away on Boxing Day 2014, shortly after his 82nd birthday, and although the whole experience was – is – heart-breaking, my love for him carried me through. I adored him.
To be honest, I don’t think I’d ever thought much about dementia until Robert was diagnosed. I had no idea how much it could destroy and how many lives it could affect, including children and grandchildren. I still can’t find any way to make sense of it, but the experience has opened my mind and my heart. If I can do anything to help others living with dementia, I will.
Rose’s Top Tips
I’ve practised mindfulness for most of my life (long before it became popular) and I found it incredibly helpful during those last few months of Robert’s life. It doesn’t have to be complicated or time-consuming. I would just sit and focus on my breath and as I did it, the worrying thoughts would stop and I would get some peace. I even showed some of the carers at Robert’s nursing home how to do it when they asked about it. If you practise enough, it can become as normal as having a cup of tea.
Try not to fight against what’s happening, just love the person as they are, accepting that they are doing their best and that you are too. It’s harrowing of course, but you will survive it.