It is a year since journalist SELINA VENIER wrote about Vince O’Rourke’s inspiring story of love for his wife Margaret with whom he shared the struggle with Alzheimer’s disease as her carer. Vince had written a book about their experience and it has touched many hearts. Selina caught up with him again recently
IT is a little over a year since Vince O’Rourke released a book about caring for his wife through her struggle with Alzheimer’s disease, and he’s been inundated with requests from medical professionals, universities, government and individuals to share his experiences.
Vince, who was the first lay director of Brisbane Catholic Education, cared for his wife Margaret who died peacefully of the degenerative condition in October 2006, seven years after her diagnosis.
Vince wrote I Wish I Was a Leper in response to “the greatest gift ever received”.
“What a great gift it is to have done what I have done,” he said.
“How often do you get a chance to take someone you love … someone who can’t remember how to blow their nose, can’t drink … and care for them?
“You can’t be a carer without unconditional love.”
Among his 20 engagements in July, August and September has been Ozcare development days in Brisbane and interstate, an address to psychology students at the University of Queensland, St Lucia, the Catholic Health Australia National Conference, Alzheimer’s Australia conferences in the Northern Territory and as guest speaker for the launch of Continence Awareness Week in Canberra.
Speaking mainly about the role of carer, Vince was able to impart very practical and personal insights.
Such advice included “prioritising”.
“Make sure that you always keep the main thing ‘the main thing’,” he said to those in the caring role.
“For me that entailed that my focus would be Margaret and her needs.
“I expressed my ‘main thing’ as ‘to do whatever it takes to ensure Margaret retains the dignity that is the right of every human person, as an adult’.
“Everything I would do flowed from that.
“How well or competently I did so depended on a number of factors like my willingness, my abilities, stamina, health of mind and body, all underpinned by a deep love for her.”
There were at least 10 other “strategies for carers” the former BCE director highlighted, among them the development of the virtue of patience and a commitment to ongoing physical health and well-being.
“Eat well and exercise regularly,” he advised.
“I actually found that Margaret liked going for a walk each day.
“(And) make time for your own needs whether that be in the social, emotional or spiritual domain.”
The O’Rourkes found such support and encouragement in their faith community.
“Ladies would tap me on the shoulder and say, ‘You’re doing a good job’,” Vince said of their regular Sunday Mass attendance in Coorparoo.
“What they meant was that she looked what she looked like before … In the public arena I always ensured she looked the same and there were going to be no embarrassing incidents.”
Vince said “a confidant, a close friend or relative, a priest or minister” is a helpful companion for the journey, helping navigate the “joys and pains”.
“Don’t be too proud to ask for help of them,” he continued.
“We all think we are super human (but) don’t find out the hard way you are not.
“Caring is the hardest task I was ever faced within my lifetime.”
“Graciously accepting” such help was also on Vince’s “advice list” as was “remembering to laugh”, the importance of “early assessment” and “contingency plans” in terms of wills and powers of attorney.
“(And) learn to accept what can’t be changed,” he said.
“Embrace it so that the negative energy expended in ‘Why me?’ or ‘Why us?’ does not weigh the carer down and thereby distract you from the ‘main thing’.”
During a medical symposium Vince highlighted the need to “recognise the triad relationship” between patient, carer and medical specialist.
“Diagnosis and treatment of this disease will be greatly facilitated by accepting that there is a triad relationship in your professional interface,” Vince said.
“For each patient with dementia there will normally be a carer.
“I have often said … the carer becomes the most important asset in the life of the person with dementia. Carers know the patient far better than the doctor in most instances. They live with them 24/7.”
He gave the following further “advice” to doctors.
“Dementia is not just a disease of the elderly so consider carefully the young (and) carers too can be young, teenagers looking after parents or grandparents.
“Consider the special needs of the patient who still lives alone.
“Clearly identify patients who are at higher risk of dementia – those with hypertension, diabetes, high cholesterol, those suffering stroke, having Down syndrome, are HIV-positive, have multiple sclerosis or Parkinson’s disease.
“Use the diagnostic tools … and consider the human and social aspects of issues.
“(Also) consider the carer’s input as confidential.
“Not to do so can and does lead to repercussions from the patient via verbal and emotional abuse.”
Continuing to accept invitations to speak about Margaret’s condition and his role in her treatment and care, Vince well recognises “God’s hand in it all”.
“I was never more aware of being an instrument of God than I was in the caring for all of Margaret’s needs,” he said.
“Unconditional love was and is the base of care, of ministering to another.”