A family who changed their travelling lifestyle to help support a father with dementia
From the December 2015/January 2016 issue of our magazine, a dementia diagnosis can mean a family making significant adaptations to how they live. Fiona Madden speaks to a woman whose family had to change their travelling lifestyle.
When Kim Maloney's dad, then aged 50, began having noticeable memory problems 19 years ago, the family recognised the symptoms of dementia from older relatives.
After Kim's grandmother died and they were en route to the funeral, her dad asked where they were going and was adamant that she was still alive. He was taken to their GP and following a brain scan was diagnosed with mixed dementia – vascular dementia and Alzheimer's disease.
Kim, 43 years old, says,
'My aunt lives two doors down from us and he says "Who's that woman?" and we tell him. He says "No, my sister's small". He remembers his past life but doesn't remember after.'
She believes her dad is aware of his memory loss even though he hasn't spoken much about his diagnosis.
No more moving
Kim's family are Irish Travellers and they frequently moved from place to place. However they have now settled in Cottingley Springs, caravan sites established for Traveller and Gypsy communities in Leeds.
They had tried living in a house in a suburb of the city, but neighbours were suspicious of an older man who would join in with the local children's games.
'Mammy said we couldn't settle down in the house because my daddy wouldn't understand he couldn't play with them kids.
'So that's why we settled on the site because he has his own community around him. It's a lot better. We couldn't live in a house anyway because with my daddy he's used to being in a caravan. It's where he's lived his whole life.'
Kim is one of 12 children and says that although her mum is her dad's primary carer all of her siblings and others in their community pitch in to help. She describes friends and family as always 'coming in and out' to take her dad out for the day.
'In the travelling community we support each other.'
Kim says her dad now believes he is a teenager. He has no recollection of her as his daughter but does remember her mum fondly, even though he believes that they have only been married a short while.
They are careful to make sure he doesn't get lost, especially if he leaves the site by himself, but being in a community where people can look out for each other makes a big difference.
'He doesn't sleep. He walks around all night so we have to watch him. He's a handful, God bless him, but the kids where we live won't let him through the gate.
'They call him "our daddy". If they see him going out they'll call "Our daddy is going out the gate!"'
Kim's dad is far from being the only one in the family with dementia, as his father and all four brothers have had the condition. Earlier this year his eldest brother passed away with Parkinson's disease and dementia, and his youngest brother was diagnosed at the same time.
This has left Kim and her family fearful that they, particularly the males, may inherit the condition. The effects of genes on a person's risk of developing dementia are complicated and unfortunately there is much yet to be understood about them.
The GP put the family in touch with their local Alzheimer's Society and a support worker, Glyn Forrester, spends time with Kim's dad once a week.
'Glyn takes him to the park or for a cup of tea or a walk. My daddy seems to like him.'
Although Kim helps out with her dad as much as she can, she has three children of her own to look after and she worries about the constant strain on her mum.
'It's hard on her because she's 60-odd herself. We all help out but she's there 24 hours a day, seven days a week with him. It's a lot on her really to have this burden. She doesn't get proper sleep and all her attention goes on him.
'On Tuesday nights me and her go to the bingo and my sister minds him because Mammy doesn't get anywhere. Everywhere she goes he's with her normally.'
It is difficult for the family when he speaks as if he were still in Ireland decades ago and they have learned to respond carefully to avoid causing him unnecessary distress. Before he stopped recognising Kim he used to identify her as his sister and he refers to all the young children on the site as his own.
Keen to move
Although they are on the caravan site rather than in a house, being settled in one place can still be problematic. Kim's father is keen to move on as he has been used to doing.
The council helped them to build an extension on to her parents' caravan so that he has more of his own space and is as comfortable as possible.
'I think there should be help for my mam. We look after him, don't get me wrong, but to have someone to come and support her more. They wanted a carer to come in all day with her but he wouldn't stay with her.'
Kim is certain that the community will always care for her dad no matter how hard it gets. She says that she wouldn't be able to sleep at night if he moved into residential care, though it is hard to watch him deteriorate.
'My daddy was a very clever man. He couldn't read and write but he was the best mechanic going. To think for a man who was so sensible and hard-working all his life, for this to happen to him it's very sad.'
See our factsheets Am I at risk of developing dementia?, Making decisions and managing difficult situations, and Walking about or call 0300 303 5933 to order.