‘I am try­ing to make each day a pos­i­tive ex­pe­ri­ence’

Bucks Car­ers backs De­men­tia Aware­ness Week

Buckinghamshire Advertiser - - NEWS -

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

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