AS the Prime Minister admits dementia poses a “national crisis” and pledges millions in funding, AINE FOX speaks to members of the Mid Ulster Dementia Support Group about caring for someone diagnosed with this devastating illness.
SADNESS, fear, confusion and uncertainty.
These are just some of the emotions Cookstown woman Ann Cardwell felt when her mother was diagnosed with Dementia.
“I was so afraid about what the future held,” she told me from the cosy living room which played host to one of the most recent meetings of the Mid Ulster Dementia Support Group.
Ann is the group’s chair and was one of the first members when it was set up almost seven years ago.
She was encouraged to attend the new group by the Community Support Worker who was helping her to deal with the mental, physical and practical consequences of having a close family member diagnosed with a disease which sees the slow deterioration of the mind.
As I sit and listen to the different experiences of the six women around me, the truly devastating nature of this illness becomes apparent.
All the members – the group currently has around 12 regular attendees – have their own stories of loss, whether it is a parent or a partner, and each is equally sad.
Avril Averill, a mother-of-two, had to confront her worst fears when her beloved mother was diagnosed some years ago.
She became the carer for the woman who had raised her.
“It was such a difficult time,” she recalls. “When I was told the news I was there with my mother and no-one else around to support me. I am an only child and so couldn’t share the impact of the diagnosis with siblings. There were times I just wanted to burst into tears and I thought ‘How am I going to cope with this?’ But you have to be strong for the person you love.”
Ann told me Dementia has been described as the “Long Goodbye” because of its progressive nature.
“My mum was drifting away before my eyes,” she said. “Every day you were losing another piece of the mother you loved.”
Both Ann and Avril cared for their mothers until they passed away and said if it hadn’t been for the support – which continues now – of the Mid Ulster group they could not have come through it.
One of the newest members Norma McComb, who is a carer for a close relative living with the disease, said she has made firm friends through a shared experience.
“Since I first met Ann and the rest of the ladies I have been shown nothing but friendship and a lovely welcome into the group,” she said.
Norma is one of those to have benefited from the group’s fundraising efforts in recent years, gaining some time to herself through the “Sitting Service” grants.
“As a carer I know what it’s like to want to be able to go out for an hour and sometimes not be able to do so,” Norma said.
“But with the help you get from the money these ladies have raised you can pay someone to come in for an hour or two just to give you a break, or to keep an appointment.”
Ann now spends much of her time organising meetings, events and fundraisers within the group as well as supporting carers and proactively working to expand the group’s membership, while Avril has helped with caring for other dementia sufferers since her mother passed away.
Both women said the presence and continued support of the group since the deaths of their mothers has been invaluable.
“Having been through it all with my own mother I know what it is like and how tough things can get,” said Avril.
“Now I want to give back some of the support I received during that time and help others. It is difficult not to get very attached and to really feel devastated when someone passes away but I know it is at that time when a family needs the most support and I want to be able to give them that.”
Ann recalls feeling wary when she first joined the group, saying carers often find it difficult to talk about their experiences because they feel they are betraying someone they love.
“When I came to the first meeting I couldn’t believe other people were saying the same things as me and really knew what I was going through,” she said. “I felt such a relief to be able to come to the group and discuss something that was really bothering me or what had happened in the previous week, and the members understood me and helped me through it.
“You feel safe when you come to the group. There is a sense of loyalty - that what is said in the group will remain private and confidential and that is something that is very important.”
Another group member, whose husband was diagnosed with Dementia, said it is sometimes the practicalities of caring for someone living with the illness that can be the biggest struggle.
“The doctor told me my husband wouldn’t be allowed to drive anymore,” she said. “Even after I explained to him why it wasn’t safe he would ask me where the car keys were or he would attempt to drive the car. “This is a very common problem for carers and you just have to carry the keys with you or hide them but it is hard for the person to understand and it confuses them.
“A textbook or research doesn’t tell you how to handle that situation – so I came up with a solution myself.”
The lady swapped her husband’s keys for an old set, allowing him to feel that nothing had changed and he was still in control.
“Sometimes all it took was for him to know he had the keys in his pocket and he felt better. If he tried to use them they wouldn’t work so I would get into the drivers’ side and use my set, then I’d tell him while I was there I might as well drive him to where he wanted to go.”
As this story is recounted, the other members share knowing looks and smiles – they have all been through this situation and being part of the group has helped them to deal with this and other realities of dementia.
One member said healthcare staff can offer a lot of support, but being surrounded by fellow carers is crucial to coping with the knock-on effects of dementia.
When someone goes into respite for the first time or into care on a permanent basis the support gorup is an invaluable ource of comfort and advice, helping carers to cope with the guilt thatcan arise from these situations.
“Doctors, community support workers and so on are great, but it is this group I come to when I want to talk to someone who really knows exactly what I am going through.”
New members are always welcome to the group – contact Ann at 5 Westland Road South in Cookstown, call 028 867 65479 or email firstname.lastname@example.org for more information.