Staying strong with Alzheimer's
Liz Cunningham used to train people living with a disability, but when she was diagnosed with Alzheimer's disease, says Joy Orpen, she was forced to seek help of her own. Now reclaiming some independence is a daily goal
Imagine going to the bathroom at work and, just a few minutes later, realising you don't know how to get back to your office? Or how about standing in front of an audience and then realising, with acute embarrassment, that you have forgotten what you planned to say?
These are just two of the traumas that have befallen Liz Cunningham, 51, a pretty, vivacious Belfast resident with a prestigious career in information technology (IT) behind her.
The events are symptomatic of a degenerative disease that will increasingly rob her of her ability to comprehend the world about her.
Liz suffers from Alzheimer's disease (AD). According to the Alzheimer Society of Ireland, "This is the most common cause of dementia. It is recognised by the build up of protein on the brain that forms plaques and tangles that stop the brain working as it should."
The muddling of her mind appears to mirror some of the confusion Liz felt growing up in a divided Ireland. She used to play with the six-inch rubber bullets that peppered the gable wall of her family home; gunfire and bombs exploding were very real experiences.
With a Protestant father and a Catholic mother, Liz felt torn.
Her concerned father would urge her to go to a church of his choosing. But she resisted, because, in truth, she was drawn to the Catholic Church.
However, that didn't stop her falling for, and eventually marrying Philip Cunningham, a softly spoken, young Protestant painter and decorator.
They were deliriously happy, until one fateful day, when Philip had an accident while riding his pushbike. And, though doctors saved his badly damaged leg, he was left with chronic pain, a walking stick and unfit for manual work.
Liz, who left school at 16, and who had previously worked as a court clerk and as a credit controller, realised that, if she was to support the family, she needed further education. So she enrolled at an adult education college and achieved a National Vocational Qualification (NVQ) Level Four in business information and technology.
She then embarked on further studies at Queen's University, where she did IT and business systems. This resulted in Liz providing IT training for people who were living with a disability.
While Philip stayed at home to care for their two beautiful girls, Liz was doing work she loved. In time, she moved to the Cedar Foundation, which has as its vision, "a society accessible to all".
"I began training people so they could be more self-sufficient, as well as having the skills to train others," says Liz.
By now, Liz had many responsibilities. But then came a time when she began struggling with simple tasks.
"There was a huge amount of administration attached to my job. For example, I had to arrange transport for my students. But, all of a sudden, I, who had been a perfectionist, was giving wrong dates and times. What my brain told me to write was not what ended up on the page," Liz says. She began to struggle with words: she simply couldn't get them out. She would lose her sense of where she was and panic. She became acutely depressed. "I was terrified of getting things out of context," she says, "so I became silent and stopped talking."
In 2010, Liz felt compelled to take extended sick leave.
Her daughter took her to a GP, who prescribed antidepressants, which only made her depression worse.
"Because you are a woman, and there are tears and emotions involved, they automatically assume it's menopausal," says Liz. "But my daughter wasn't having any of that."
Eventually, Liz was seen by Dr Michael Mary Doherty, a psychiatrist at Belfast's Mater Hospital, who diagnosed posterior cortical atrophy – a form of Alzheimer's that affects the back of the brain.
For Liz, the diagnosis brought relief. "I thought I was going mad," she said. "By then, I had accumulated a lot of medication, and I planned to take it. I couldn't stand what was happening any more. I felt I was falling apart, and that I was letting everyone down. So the diagnosis was a relief," she says, adding, "Of course, it was a terrible, terrible shock for Philip and the girls." All that happened in 2012.
Liz was introduced to Mary McGrath, an occupational therapist at Belfast City Hospital, and the pair now have a strong bond. Liz says Mary has given her invaluable information about ways in which she can reclaim some of her independence.
"She helps me resolve day-to-day issues," says Liz. "She showed me how to draw up lists and to tick things off as I do them. Philip used to give me my medication; now I manage that myself."
Using a small photo album, Liz has created a manual for herself, which contains step-by-step instructions on how to do specific tasks – things such as putting on the washing machine, and dressing and grooming herself.
Liz is also grateful to Siobhan O'Connell, a specialist nurse, who told her about Hemsworth Court – a "supported housing facility", next to the Shankill Road, which was about to come on-stream. The Cunninghams made the difficult decision to leave their family home and move into an apartment in this warm-hearted new facility. Liz says much of the previous stress has now been removed. She says she has also improved since she began taking Souvenaid – a specially formulated drink that claims to replace important nutrients often found lacking in people with Alzheimer's.
"She's been on it about 10 months, and I can see a definite improvement," says Philip. It would seem her scores in tests for cognitive and memory function have also increased since she began taking the drink.
During this interview, Liz talked enthusiastically, honestly and coherently, although there were a couple of times she needed Philip to confirm certain facts.
Right now, Liz is in a much better place, both physically and emotionally.
She is in no doubt that her future holds challenges, so she has drawn up a legal document setting out her wishes should a time come when she is unable to speak out for herself.
No doubt, her devoted husband will take very good care of this delightful, intelligent and insightful woman.
When she decided to move to Hemsworth Court, she asked Philip if he would come with her.
"I'd follow you to the moon and back," he replied, and he clearly meant it.
LIFE magazine, Sunday Independent
- Souvenaid is available from pharmacies for use under medical supervision. See www.souvenaid.ie
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