Former EastEnders star John Partridge revealed last week that his mum is now in the final stages of dementia and that he’s struggling to find anything positive about the experience.
Our hearts go out to John Partridge. The Soap actor has spoken publicly about his mum’s dementia on several occasions, and has managed to raise awareness of difficult issues which affect thousands of other families living with the condition in the UK.
John’s devotion to his mum is clear. He gave up his role in EastEnders to care for her, then four years later, when her needs became too great for him to manage, he took part in Celebrity Big Brother so that he could use his fee to pay for a care home (his mum’s care home fees reportedly run to £45,000 per year).
But the dementia journey is a long and arduous one. Whilst being interviewed about his latest role in La Cage Aux Folles on Good Morning Britain last week, John opened up about his mum’s condition.
‘She’s safe and comfortable but we are entering the later stage of Alzheimer’s’ he said. ‘I know they say there should be positive ways of living with dementia, but 12 years down the line I find that very difficult, there’s nothing that positive about it.’
His words are bound to ring true with many others who, like John, have lived with dementia for a long time, are grieving daily for all they’ve lost and find the notion of ‘staying positive’ rather glib and irritating. The late stages of dementia are extremely challenging, there’s no denying that watching a loved one slowly decline can be depressing and upsetting. But it isn’t usually unremitting misery, as John himself acknowledges. ‘There are moments, we have flashes, music is a great therapy,’ he said later.
Other people too have found ways to connect with their loved ones, even when their dementia is really advanced. ‘The main challenge is keeping Mum stimulated which requires quite a bit of imagination and ingenuity,’ says Martyn whose mum Jean has been bed bound for nearly four years in the late stages of vascular dementia. ‘I’ve found many ways to give her day meaning and structure, she has a baby doll which she absolutely loves and I use lots of different coloured lighting systems in her room to provide visual stimulation. She loves violinist and conductor Andre Rieu and becomes quite animated when I put on one of his DVD’s. I also have a playlist of her favourite music on Spotify which she likes.’
‘Mum is very ill, she can’t walk or speak or do anything very much,’ says Olivia whose mum Miriam is in the late stages of Alzheimer’s and has been in a care home for three years. ’It’s a lovely home and now that her practical needs are taken care of the challenges for me are more emotional. Finding ways to connect with her, or get any kind of reaction, however small, are my biggest challenge. I bought her a busy cushion which she likes to stroke and cuddle. It’s tough, but I won’t ever stop trying.’
‘Coping doesn’t necessarily get worse as the disease progresses,’ recalls Rachael who cared for her partner Irene after her diagnosis with early onset dementia. ‘I found some of the early stages were the worst and some later stages were easier. ‘
Whether you’re at the beginning or nearing the end, there’s no doubt that every dementia journey is unique. But with the right support and advice life can be made more bearable. Whether you’re feeling positive or close to despair, knowing that you aren’t alone, and that you’re doing the best you can, is all that really matters.
What do you think? Is it possible to stay positive about late stage dementia? We’d love to hear your views.