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From child to caregiver – Paul’s story

Prior to 2007, Paul Cassidy knew very little about dementia. His experience was limited to the sort of things you pick up watching TV and reading magazine articles – knowledge you absorb without really intending to. This all changed when, in the space of a few years, both Paul’s mum and dad developed dementia.

The varying onsets of dementia

Paul, originally from the UK, was living in Amsterdam when his mother, Orita, suffered an unexpected stroke in 2007. Orita had always been a mentally very sharp woman and although Paul recalls that she initially had still seemed quite “with it” after the stroke, he and his family noticed that she had started to say odd things from time to time. A second stroke and a dementia diagnosis followed soon after, at which point she started to age rapidly in Paul’s eyes. Orita sadly passed away in 2010.

Though Paul’s mum’s dementia came along suddenly, the opposite was true for his dad, Colm. It was during his mother’s final years that Paul ,and his sister Sharon, began to understand dementia more and recognised some signs of it in their father. Colm worked as a taxi driver in Kent, England, and prided himself on his knowledge of the local roads. It came as a surprise to Paul when Colm requested a voice recorder – so that he could record instructions from the dispatcher, and a Sat Nav GPS. It was small things like these that, although seemingly innocuous, were all signs of things to come.

Though it was evident to Paul and his family that something was happening to Colm, most outside observers would rarely notice any changes. Like his wife, Colm started to say things that were out of place and his memory would sometimes lapse, but otherwise he was absolutely fine most of the time. Unfortunately these small disruptions were enough to make life tricky for Colm.

A change in independence

From a young age, Colm had been fiercely independent, leaving his home in Ireland at 11 to start earning a living. Understandably, he wasn’t comfortable with any sort of dementia diagnosis – he didn’t want to lose the independence he’d valued for so long, which made things difficult for Paul and the rest of the family. Even something as simple as going for a walk around the block could be a challenge for Colm. 9 times out of 10 he would have no issues, but on that tenth occasion Colm could completely forget how to get home – even though he’d walked the streets many times before. As Colm baulked at the idea that his memory was failing him, it was tough for Paul and his sister to prevent this problem. Going through directions a number of times didn’t ease the issue, so they had to settle on an alternative: “We hid a card with dad’s address in his wallet, in case someone found him looking lost”.

Though Colm has somewhat come to terms with his diagnosis now, life still has just as many challenges: “Dad can sometimes run into someone in the street who recognises him, but he has no clue who they are.” It’s events like these that have put a dent in Colm’s confidence – things he used to find trivial can now be exceptionally challenging. Paul has found that people are very understanding of Colm’s condition, but that doesn’t mean Colm likes to share it with other people; he still finds it somewhat embarrassing. This embarrassment has caused Colm to withdraw from a variety of social events. Although Colm has been willing to go out with Paul, his family, and some of his closest friends, he finds it tough to socialise with others who he isn’t quite as close with – though that doesn’t stop him from popping down to the pub at lunch to have a meal with some of his mates.

Helping people with dementia to live well

Paul and his wife, Dorothy, were on the cusp of moving to New Zealand from Amsterdam in 2007 but put off their move due to Orita’s stroke. They remained in the Netherlands and visited home as often as they could, but also did little things to help raise money for dementia organisations. Dorothy would make a lot of craft objects, and sell them at craft markets to raise money, and they even used the Queen’s Day holiday in Amsterdam, to set up a stall outside their apartment. The money would go to various dementia and Alzheimer charities in the UK.

A few years later, after Orita had passed away, a new job opportunity meant that Paul and Dorothy once again had the chance to relocate to New Zealand. With Dad's condition, they were unsure whether they could go, but since he had moved closer to Paul's sister, with her support they were able to make the move and departed the Northern Hemisphere and set up in Auckland.

Paul and Dorothy have continued to make a difference to others with dementia since moving to New Zealand. Recently Paul set up a Give A Little page to raise money for Dementia Auckland, completing a five kilometre fun run in Orewa in exchange for donations. “I’ve never been the most active person in the office”, laughs Paul, which probably contributed to how he was able to raise almost $300.

New challenges from afar

Living on the other side of the world and trying to communicate with your relatives can be hard enough for the average person, but the difficulties of the situation are magnified when one of those relatives has dementia.

Like many, Paul and his dad communicate frequently via Skype. Whilst talking your parents through logging into their account and setting up a call can be a struggle for everyone, these issues crop up more regularly for Paul. Operating a computer or tablet can be challenging at the best of times, and sometimes Paul needs to ask his sister to pop over to his dad’s place to fix up the tablet – luckily she lives just around the corner from Colm. For a long period of time, Paul’s dad was able to use a customised tablet which only had Skype installed, which was very easy for him to navigate: “Dad just had to turn the tablet on and click on my picture to call me.” Sadly, the company that produced these stripped-back tablets has ceased trading, but Paul and Colm still manage. 

Since the onset of dementia, Paul and his sister’s relationship with his dad has flipped completely. Whilst Colm was once the guardian in the relationship, now they have to make the decisions concerning what’s best for their dad. The only difference, as Paul wryly amends, is that “children will automatically accept their parent’s authority” – something Colm isn’t quite yet ready for!