De­men­tia book brings dis­ease into the open

Auckland City Harbour News - - NEWS - By LAU­REN PRIESTLEY

Af­ter An­gela Caughey’s hus­band was di­ag­nosed with de­men­tia his be­hav­iour fi­nally started to make sense.

Brian had been ‘‘los­ing his way’’ for months, Mrs Caughey says.

He was be­com­ing stiff, strug­gling to keep up with con­ver­sa­tions, find­ing writ­ing and reading dif­fi­cult, adopt­ing an in­creas­ingly im­pas­sive ex­pres­sion and fall­ing mul­ti­ple times a day.

He was ini­tially di­ag­nosed with Parkin­son’s dis­ease but two years later the cou­ple were told he had Lewy Body De­men­tia.

It’s an um­brella term for a set of symp­toms that in­clude some of the fea­tures of Parkin­son’s and de­men­tia.

Mrs Caughey was Brian’s carer for 12 years un­til he died in 2006.

The 83-year-old woman has writ­ten Deal­ing Daily with De­men­tia to pro­vide prac­ti­cal strate­gies for other car­ers. Its launch to­day co­in­cides with World Alzheimer’s Month.

De­men­tia comes with a lot of stigma, shame and fear, Mrs Caughey says.

Some of her hus­band’sclos­est friends stopped visit­ing be­cause ‘‘they didn’t want to see him like that’’.

It left him feel­ing hurt and iso­lated, Mrs Caughey says.

‘‘We need to talk about de­men­tia be­cause so many peo­ple are get­ting it.’’

Mrs Caughey says her hus­band was al­ways a gen­tle man but the dis­ease changed him in many ways.

Dur­ing a stay in hos­pi­tal af­ter Brian had a heart at­tack, nurses called to say he was on a ‘‘ram­page’’.

Mrs Caughey sug­gested staff read him the busi­ness news while she made her way to the hos­pi­tal.

‘‘When I got there, there he was sit­ting up in bed, calm and peace­ful, lis­ten­ing to the news.’’

Mrs Caughey even­tu­ally joined a sup­port group af­ter try­ing to cope by her­self for a long time.

She says the de­ci­sion was a life-saver.

The group of women would get to­gether monthly to share wis­dom about car­ing for their hus­bands who have de­men­tia.

It was where the seeds for the book were sown.

‘‘We laughed so much when we heard some of the sto­ries. We wanted to col­late them all for other peo­ple – there was noth­ing out there like it.’’

Alzheimer’s New Zealand ex­ec­u­tive di­rec­tor Catherine Hall says World Alzheimer’s Month is about rais­ing aware­ness of the dif­fer­ent types of de­men­tia and where peo­ple can go for help.

‘‘For ev­ery per­son with de­men­tia there is a whole net­work of peo­ple who are af­fected by the di­ag­no­sis.

‘‘We need to get past the stigma and bring de­men­tia into the sun­shine.’’

Photo: LAU­REN PRIESTLEY

Carer’s tale:

An­gela Caughey, 83, has writ­ten her fifth book. It is about her ex­pe­ri­ence of car­ing for some­one who has de­men­tia.

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