- Area:
- Wales
- Programme:
- Advantage
- Release date:
- 21 3 2012
A carer who has spent the last six years looking after his wife who has Alzheimer’s has opened up on how the illness has ruined their lives and how support from a Big Lottery Fund awarded project provides him with much needed respite from his daily caring responsibilities.
Last year, the Alzheimer’s Society was awarded nearly £960,000 from the Big Lottery Fund’s (BIG) £20 million AdvantAGE programme, which aims to empower older people in Wales by reducing social isolation and developing support services.
The money has been spent on running Side by Side: An All-Wales Befriending Service for People with Dementia. The project provides companionship, emotional and practical support for people with dementia and carers in Wales by training a dedicated team of volunteers to befriend people with dementia on a one to one basis and supporting carers through a new telephone befriending service.
Among the people to benefit from the project are 66 year old Michael Cohen from Kidwelly and his wife Jenny, who has Alzheimer’s. After working for most of their lives with the Probation Service in Manchester and bringing up two children of their own, husband and wife Michael and Jenny Cohen were looking forward to retiring to their dream home in Kidwelly on the South Wales coast and enjoying the rest of their lives together.
“We both worked tremendously hard in tough and difficult jobs for most of our lives and we retired to Kidwelly when I was 60 with lots of plans and ideas about how we were going to spend our retirement and enjoy the rest of our lives together,” explained Michael.
Shattered dreams
No sooner had they arrived in Kidwelly, it was evident that Jenny was becoming ill and three years ago she was diagnosed with Alzheimer’s, an incurable disease which damages the brain and affects around 465,000 people in the UK. Now Michael spends his time caring for Jenny and such as been the impact of the illness on their lives, they sometimes feel that life isn’t worth living at all.
“All those plans have now been shelved because of this terrible illness and we have never been able to enjoy our retirement at all,” says Michael.
“It’s very sad and really tragic, especially when somebody has worked as hard as my wife and I have. Now she finds herself with this awful illness which has drained her confidence and enjoyment of life. It’s had a similar effect on me but at least I have a life outside of the illness.”
With symptoms including memory loss, anxiety, confusion, mood swings and obsessive behaviour, the illness has had an atrocious impact on the couple’s lives:
“I’ve been a carer for as long as my wife’s had the illness,” says Michael.
“She has no idea what time it is or what day it is. She gets very confused and if I’m out in the evening and I get home at 11pm, she thinks it’s getting up time and time for breakfast. So there’s no understanding of day or night. Basically, bits of the brain cease to function as the disease continues. Eventually, the brain will almost give up altogether.”
“It’s very difficult because the person I knew and married and lived with for more than thirty years is no longer there. It’s a very different person who’s there now and it’s impossible to have a logical conversation because my wife can’t have one. She can’t remember anything, she has the most awful mood swings, and she’s quite aggressive towards me frequently. It’s a ghost or a shadow of the person I knew.”
Taking its toll
The illness has taken its toll on the couple, who mark 35 years of marriage this September, and Michael says that his only respite is when he works three days a week as a Registrar with the Local Authority:
“There’s no improvement, there’s only deterioration,” he says.
“You have a loved one who is never going to get better and can only get worse and there’s very little you can do to help at all really, apart from be there for her. My wife is incapable of doing anything around the house apart from occasionally a little bit of ironing because she’s forgotten how to operate machinery. She can’t operate the telephone, TV or any equipment in the kitchen. She can’t even make herself a hot drink because she doesn’t realise when the kettles is boiled. So I have to do all the cooking and the washing. It’s basically all down to me.”
‘Life isn’t worth living’
And the worst thoughts are never far from their minds: “I have bad patches and I’ve been prescribed anti-depressants and sleeping tablets,” says Michael.
“Sometimes I get very depressed because I know this is going nowhere apart from worse. I also don’t have any break from my wife as she refuses to go to day centres.”
“She refuses to consider respite care and any other form of care apart from what I can provide for her. So the only break I have is to go to work because I know she’ll be safe during the day.”
“Both my wife and I occasionally feel suicidal. She often says that life isn’t worth living anymore. I occasionally feel pretty bad and feel like I don’t want to be here. What keeps me going is that fact that if I wasn’t around, she couldn’t function. She would be lost without me.”
Great Support
However, Michael is thankful to the support he receives from the Alzheimer’s Society:
“We’ve had various help from them and they’ve offered numerous training courses and sessions,” he says.
“What’s been extremely helpful is the volunteer they’ve provided us. The volunteer is an ex-nurse who comes to see Jenny once a fortnight for a couple of hours in the afternoon and talks to her and takes her for walks in the afternoon. It’s something Jenny looks forward to and is very important to her. It’s the only other human contact she has apart from me. We would be very pleased if the volunteer could come more often.”
“I know that once a fortnight that someone’s there for my wife, which helps me, because I know the volunteer comes during one of the days I’m in work and there’s someone there for my wife.”
He added: “More funding locally is needed for projects such as this one. The more local resources there are available the better. It’s local projects that make a difference to people’s lives.”
The AdvantAGE programme has awarded between £200,000 and £1 million for projects running between three to five years.
For further information about the BIG Lottery Fund and how you can apply for funding, please visit www.biglotteryfund.org.uk and use the ‘Wales’ specific search facility.
Further Information
Big Lottery Fund Press Office – Oswyn Hughes: 02920 678 207
Out of hours contact: 07760 171 431
Public Enquiries Line: 0300 123 0735
Textphone: 0845 6021 659
Full details of the Big Lottery Fund programmes and grant awards are available on the website: www.biglotteryfund.org.uk
Notes to Editors
- The Big Lottery Fund (BIG), the largest distributor of National Lottery good cause funding, is responsible for giving out 46% of the money raised for good causes by the National Lottery.
- BIG is committed to bringing real improvements to communities and the lives of people most in need and has been rolling out grants to health, education, environment and charitable causes across the UK since June 2004. The Fund was formally established by Parliament on 1 December 2006.
- Since the National Lottery began in 1994, 28p from every pound spent by the public has gone to good causes. As a result, over £27 billion has now been raised and more than 370,000 grants awarded across arts, sport, heritage, charities, health, education and the environment.
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