‘I am trying to make each day a positive experience’
Bucks Carers backs Dementia Awareness Week
They have thrown their weight behind Dementia Awareness Week and organised a special day on Tuesday, which took place at the St Michael and All Angels Church, Amersham.
The day offered a number of activities, such as music therapy, singing and training sessions, and a number of stalls offering advice and information. According to charity Carers Bucks, more than one third of the carers they support are caring for a family member or loved one affected by dementia or Alzheimer’s.
Diane Rutter, 53, from Chesham, has been caring for her father, Charles, ever since he was diagnosed with dementia nearly two years ago.
Diane says that as a family they were aware that ‘things weren’t right’ for Charles a long time before his diagnosis, and thatat it was a ‘relief’ it was acknowledged.
She says that roles in the family have changed and that Cambridge law graduate Charles, 83, has become more and more withdrawn, that he now suffers from hallucinations and is not ot making his presencence known as much as he used sed to.
“Our roles in the family mily changed. Over time we were looking out for him whereas he was always the one who looked out for us,” she said.
“The changes have got more and more. My brother and I do everything – running the household and personal care for him. It’s strange. It’s different.
“I think knowing what’s happening to him and what’s going to happen made it much more manageable for us and trying to stop it happening isn’t going to work.
“Understanding and accepting what’s going on is the best way.”
Rather than trying to fight the disease, Diane says she just focuses on ‘what I can do and trying to make each day a positive experience for him and the rest of the family’.
She says that having her brother to help her look after Charles ‘makes it easier’ but that her dad has ‘always been appreciative of what we do’.
Events like the one held in Amersham are important, she says, because dementia is a ‘stigmatised’ condition and that a lot of people are afraid of it, but holding awareness weeks is important to raise the profile and teach people how to help those who suffer from it.
“There are ways of living well with dementia, if you and the people around you can think about what can be adjusted and adapted,” she said.
Diane said it is important to keep things familiar, for example making sure Charles’ breakfast routine is kept the same, labelling things, sometimes with colours so that her dad can recognise his possessions, be being willing to re repeat yourself, an and reassuring he her father at the rig right times, for exa example saying who she is when she m meets him but not correctingcorr him all of the time time. “It’s thinkingthinki about does that matter or not? If he tells me he had bacon and eggs for breakfast and he didn’t, I don’t correct him – there’s no point in doing that,” she says.
“It’s working out when it is right to orientate him to reality and when he does need reassuring.”
Diane says awareness weeks are hugely important: “I think if everybody in the country could go to one of these it would be helpful to understand a little bit more and not be so afraid of it – more positivity.
“It’s really important because for the person who’s living with dementia to have others around them that are able to provide continuity then they don’t get anxious.
She says her father’s illness has brought the family closer together ‘in a way we wouldn’t have been if we didn’t have to look after dad’, but that they have had a huge amount of support from charities like Carers Bucks and voluntary groups which ‘makes a huge difference’.
“There are times when it’s exhausting physically and emotionally and there are times when you don’t know what to do,” she says, but the support given to carers by the charities helps.
Organisations involved in the day included NRS Healthcare, Chiltern Music Therapy, Thames Valley Police Sycamore Club, Amersham Library, GLL/ Better, Alzheimer’s Society, Carers Bucks, Bucks MIND, Community Impact Bucks, Chiltern Dial-a-Ride, Chesham Doctors Voluntary Ambulance Drivers, Bucks & Surrey Trading Standards, Quality in Care, Bucks CC Prevention Matters, Healthwatch which offer severything from practical ideas to singing for the brain sessions. Visit www.carersbucks.org or call 0300 777 2722 for information on dementia awareness events and support for carers.
Diane Rutter, 53, from Chesham, with her father Charles, 83