NOTES & QUERIES

In Song for Ros­aleen (Massey Univer­sity Press, $29.99), Pip Des­mond re­counts the strug­gle her mother, who died in 2009, had with de­men­tia, and the dif­fer­ent ways in which Des­mond and her sib­lings dealt with it.

North & South - - Review - By paul lit­tle

NORTH & SOUTH: This feels like it must have been a dif­fi­cult book to write. PIP DES­MOND: It’s very per­sonal, so to that ex­tent it was dif­fi­cult, but it was also sat­is­fy­ing, to try to make sense of things.

N&S: What sort of sense did you make? PD: I came out at the other end with more com­pas­sion for every­body in­volved. Writ­ing the book in­creased my ad­mi­ra­tion for Mum – the chal­lenges that shaped her life and the way her spirit be­came fierce when it had to. And also a sense for my­self and my sib­lings, in par­tic­u­lar, about how dif­fi­cult de­men­tia is and that we did our best. So there’s a sort of peace around that, whereas when you’re in the mid­dle of it and it’s so con­fus­ing and chaotic, you con­stantly feel you’re not do­ing enough. You never can do enough.

N&S: It’s clear that get­ting a di­ag­no­sis is an im­por­tant part of deal­ing with de­men­tia. PD: That was very dif­fi­cult for us. It was hard to find pro­fes­sion­als who would give us a di­ag­no­sis. I don’t know if that’s changed in the past 10 years. I do know other people who are strug­gling with sim­i­lar sit­u­a­tions and fam­i­lies who don’t want the di­ag­no­sis, but in my ex­pe­ri­ence it’s bet­ter to know. Till then, ev­ery­thing feels in­com­pre­hen­si­ble. It doesn’t make any sense un­til you have the di­ag­no­sis.

N&S: Given your ex­pe­ri­ence, what’s your best ad­vice for some­one with a rel­a­tive who is di­ag­nosed with de­men­tia? PD: My ad­vice is to get sup­port from com­mu­nity groups to start with – the com­mu­nity or­gan­i­sa­tions at the coal­face: Alzheimer’s and de­men­tia so­ci­eties, respite care fa­cil­i­ties. They are the people who are deal­ing with this ex­tremely hu­manely and can sup­port fam­i­lies through that next round of de­ci­sions.

The Chelsea Club [which pro­vides ac­tiv­i­ties and com­pany for pa­tients and time out for car­ers] was a big help to us. I don’t think Mum went along and had a fine old time mak­ing new friends, but she tol­er­ated it in a way that she didn’t tol­er­ate other care. And, more than just get­ting a break, we knew she was be­ing looked af­ter by people who un­der­stood her, be­cause de­men­tia is so dif­fer­ent from any other ill­ness. If case­work­ers don’t un­der­stand it, then the way they treat people isn’t ap­pro­pri­ate.

N&S: You talk about pri­vacy con­cerns with shar­ing your fam­ily’s story. PD: I think writ­ers who write about real people, es­pe­cially fam­i­lies, have a grave duty of re­spon­si­bil­ity. It’s not easy mak­ing the de­ci­sion to write a story that will un­wit­tingly ex­pose oth­ers. The re­spon­si­bil­ity weighed heav­ily on me and con­tin­ues to do so and al­ways will. I fol­lowed a process of con­sult­ing fam­ily all the way through – show­ing them drafts, so there’d be no surprises. That’s the only eth­i­cal thing to do. They agreed to let me use their emails, which was a huge act of gen­eros­ity on their part. It meant I could give other people’s point of view without me say­ing, ‘This is what they think.’

Also, this is very much the ver­sion of my mother in my head. There’d be five other ver­sions if they all wrote their story. I’m deeply grate­ful to them for their gen­eros­ity.

• Pip Des­mond will share her story with Ca­role Beu at the Auck­land Writ­ers Fes­ti­val on Fri­day, May 18, 1-2pm (writ­ers­fes­ti­val.co.nz).

Pip Des­mond

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