Aged Care Insite Issue 114 | Aug-Sep 2019 | Page 34

practical living John and Cathy Ross. Photo: Supplied Help from PALZ A deep and powerful yearning for union with one’s lost self. By Conor Burke “ W ho am I?” Dr John Roth poses rhetorically as he speaks to the National Dementia Conference. John is a father, grandfather, husband and friend, and was a surgeon for 40 years before his Alzheimer’s diagnosis in 2015. He loved his work, debating, reading scientific literature, socialising, community work, taking in the arts and culture, and travelling with his wife Cathy. “[Then] in a single moment, I became disconnected by my social peers and profession … The loss was profound,” John says, describing the impact of his diagnosis. John is setting the agenda for the crowd of academics and aged care professionals from the point of view of a person living with dementia. He speaks fluently and steadily; the only hint of cognitive impairment was in a small gesture as he and Cathy approached the stage. Cathy gently touched the lectern, as if to prompt her husband towards it, and then stood aside, looking on, unconcerned and lovingly. John had always been a high achiever in life, and for high achievers the feeling of losing their old selves to dementia can be severe, Cathy says. It was difficult to broach the subject with him, she tells Aged Care Insite, and initially she “played it a little bit by ear” while consulting with the family GP. All the while John was getting by, scaling down his work commitments and offsetting his memory loss “by taking copious notes”. John talks of the guilt he feels about the change in his relationship with Cathy. As he says, “I should be part of a team, [but now] Cathy bears the burden totally”. He laments not being a source of wisdom for his children, and not being able to lead his grandchildren on trips and adventures – they now “lead me”. He feels frustrated with the looks he sometimes gets when he forgets or misspeaks. The “sad knowing shake of the head” is how he describes it. We all have the moment when we walk into a room and forget why, he says, but when he does it, he gets that look. Once confident in his knowledge and opinions, now he often remains “tight-lipped” in conversation and unsure in himself for fear of getting something wrong or forgetting. But he is not “deaf or stupid” as people now seem to assume; he just has difficulty processing information. As much as dementia has changed him, John is still the same – he still has that “thirst for knowledge and debate”. This is why, with wife Cathy, he started Professionals with Alzheimer’s. PALZ, as it is known, is a non-profit organisation designed to enhance the lives of high achievers living with early onset Alzheimer’s. 30 agedcareinsite.com.au The idea was born of a particularly unchallenging day of respite John endured. “I received a phone call just minutes after he’d been there,” Cathy says, “and he said, ‘Just take me out of here. I’m rolling a ball down a gutter.’ “And just before he had gone, he had literally been watching an in-depth show about Stephen Hawking, and Hawking talking about his theories, and we’d had a fairly engrossing conversation about that. So he went from one extreme to the other.” DISCONNECTION AND LOSS “At the innermost core of all loneliness is a deep and powerful yearning for union with one’s lost self,” Cathy says, quoting Irish poet Brendan Behan. This is the other reason the Roths started PALZ. The disconnection people with dementia feel can lead to feelings of loss and loneliness. Cathy says that previously high achieving individuals with dementia pull back socially, like John had, out of embarrassment that they are now only known for having dementia. PALZ aims to give back to these individuals some dignity and self-respect and to help them recognise that they can still function intellectually. Cathy cites studies that show intellectual stimulation can stem the tide of dementia in its early stages. PALZ organises meetings, talks and discussions in an almost corporate setting that people with dementia will feel comfortable in. Here they are treated as they once were, while engaging with society. “You know what’s amazing with the PALZ group? They remember each other, and that sounds like such a trivial thing, but people with short-term memory loss don’t commit new memories, yet they remember each other,” Cathy says, beaming with pride. The meetings are good for partners and carers too, providing relief and often stimulation for them. PALZ encourages discussion between carers and people with dementia. PALZ currently has eight chapters over two Australian states and one location in the UK. Cathy believes it is vitally important to expand this strategy, as many people with dementia “still have so much to offer”. “To see them talking and inspired, and to see them come up alive as the thinking, capable people they are instead of the box that they’ve been put in, as now incompetent and incapable, that’s an amazing feeling,” Cathy says. For a naturally private person like John, all of this attention can be trying, and he took some convincing to be involved in PALZ. But the doctor in him came to the fore and he saw his plight as an opportunity to help others. “I appealed to his medical side,” Cathy says. “I said, ‘As a doctor, you have tried in every way to leave some sort of medical legacy, and this is an opportunity to leave a fairly significant legacy to people who don’t have any voices speaking up for them’.” John has now become so enthusiastic that he participates in medical trials. “The interesting thing with John is that he’s an amazingly humble man, and he has made the comment several times that he doesn’t do the trials for what he gets out of it, he does the trials for what he will leave through it,” Cathy says. For John, the “greatest pain of dementia is the loss of dignity and self-respect … of who I am.” However, he sets the attendees straight and is at pains to dispel any preconceived notions that he is defined by his disease. “I am still the same. I still love what I did before,” he says. “I am a person who just happens to be living with dementia.”  ■