“Who am I?” Dr John Roth posed rhetorically as he spoke 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.
Until, “in a single moment, I became disconnected by my social peers and professional… the loss was profound,” John says, describing receiving the diagnosis.
John was setting the agenda for the crowd of academics and aged care professionals from the point of view of the person living with dementia.
He spoke 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 Roth toward 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 loss of their old selves to dementia can be severe, Cathy says.
It was difficult to broach the subject with him, she told 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 “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 where he would like to lead his grandchildren on trips and adventure 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.
That look can render him mute.
Once a confident man, 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 “same thirst for knowledge and debate”.
This is why the Roths 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.
The idea was borne of a particularly unchallenging day of respite John endured.
“I received a phone call just minutes after he’d been there, and he said, ‘Just take me out of here. I’m rolling a ball down a gutter’,” Cathy said.
“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 said, quoting Irish poet Brenden Behan.
This is the other reason for starting 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 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, whilst engaging with society.
“You know what’s amazing with the PALZ group, they remember each other, and that sounds such a trivial thing, but for people with short-term memory loss, they don’t commit new memories, and 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 the person 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” and are “capable of engaging and giving to the community”.
“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 said.
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 comes to the fore and he sees his plight as an opportunity to help others.
“I appealed to his medical side, and 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’”.
He has now become so enthusiastic that he participates in medical trials.
“The interesting thing with John, 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 said.
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 pre-conceived notions that he is defined by his disease.
“I am still the same. I still love what I did before,” he said.
“I am a person who just happens to be living with dementia.”Do you have an idea for a story?
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