'She fought her illness very hard': Parkinson's service welcomed by woman whose mum battled disease

As someone whose mother bravely battled Parkinson’s disease, Dr Gillian Moore Groarke is “delighted” at the appointment of the first community-based Parkinson’s nurse role created in Cork.

The Cork consultant psychologist is very much aware of how much this service will benefit the community.

Gillian’s mum, Anne Costello Moore, ed away during covid.

“For three years, my mother was in a nursing home, a decision the family struggled with as mum always loved her own home,” said Gillian.

“At the age of 64 she was diagnosed with Parkinson’s disease. She never drank or smoked, and lived a healthy lifestyle. She walked every day and in her younger days she was a fine tennis player and a great cyclist.”

Anne was a resilient lady.

“For the first seven years, she fought her illness very hard,” says Gillian. “She continued to travel at every opportunity and spent much of her time in the kitchen, teaching my father the art of her magnificent culinary skills so that he would be able to look after himself as she knew that ultimately her disease would catch up on her.”

Anne was a homemaker and a master baker.

“For those who knew mum, especially our college friends, they joke about how she fed half of UCC in the late ’80s and early ’90s,” says Gillian. “Each of our friends recall the favourite cakes she made.”

Anne was a talented lady.

“She loved art and was very talented in drawing and crafting,” says Gillian. “She spent several years teaching cooking and arts and crafts in our local community centre.

“When the challenges of her disease became apparent, she spent more time at home and the last five years before she entered the nursing home. She was largely cared for by my father, with the help of wonderful ladies who used to assist him.”

Anne also had the benefit of the Movement Clinic, which was “a great help to her,” says Gillian. “The service has now been transferred to the Primary Health Care Centre in Ballincollig where there is a multi-disciplinary team, an OT nurse and a speech and language therapist.”

The appointment of the first community-based Parkinson’s nurse in Cork, Charlotte Deasy, announced this month, will further bolster the help for people with Parkinson’s disease and their families.

Gillian says the May Bank Holiday in 2017 is etched on her mind as regards her mother’s health battle.

“I will never forget that day when mum walked into her nursing home with the aid of a walker and, despite everybody’s best efforts, she rapidly declined.

“In August of that year when she visited her consultant geriatrician, we were told she was now in end-stage Parkinson’s and she would only have a short time. The doctor said it was highly unlikely she would be with us before the year was out.”

Gillian’s father, John, was devoted to his wife throughout.

“He continued to dutifully visit her every day,” says Gillian. “In fact, his whole daily routine was based around his visits to mum.”

Anne’s resilience and resolve shone through.

“This wonderful lady I am proud to call my mum defied us all and she lingered on,” says Gillian. “The hardest part of all was to watch her decline and the cognitive deterioration that comes with the latter stages of the disease.

“The subsequent onset of the loss of the ability to speak and become non-verbal was the hardest of all.”

Then covid arrived.

“Just before it found its way into Ireland, the GP in the nursing home referred mum for palliative care and our visits were restricted to safeguard the residents,” said Gillian.

“The last time I saw my mother was March 19 for all of 12 minutes. She was very drowsy, but I was very grateful for that opportunity to sit quietly in the privacy of the family room and hold her hand and tell her how much I loved her.

“She had no idea what was going on around her, and how this terrible pandemic was beginning to take a grip on so many people and their families.”

Anne was observant.

“Her eyes surveyed my face as I was wearing a mask,” says Gillian. “I am not even sure if she knew who I was. In uncharted territory, the wonderful staff cared for mum.”

John was suffering too.

“My father’s life was turned upside down,” says Gillian. “Living alone and the routine of his daily visit taken from him. The isolation of cocooning with all the time in the world to reflect and imagine how his beloved wife and our mother was doing.”

Gillian was at a loss too.

“I missed the daily report every evening of how mum was doing if I had not been down to see her.

“Dad rang me on two occasions to sadly tell me of the ing of two of the residents. He saw their death notices on the paper. One of those lovely ladies also had advanced Parkinson’s and my father befriended her husband, and they chatted every day. There were lots of social connections lost without any goodbyes.”

Gillian cried when the palliative nurse rang her to ask her mother’s history.

“I was walking up the village and spent 40 minutes giving the nurse an insight into the beautiful woman my mother was. I was experiencing preparatory grief, which I had spoken to so many of my patients about over the years.”

What is preparatory grief?

“It is the process we go through when losing a loved one due to a progressive and ultimately fatal disease,” explains Gillian. “This type of grief requires constant adjustments to ongoing changes and losses.

“Reflecting on this, I recall sitting with my siblings and my father and planning mum’s funeral when she was initially given that short time by the geriatrician.”

Gillian was reassured by the care her mother received, and by the thoughtful videos and photographs sent to the family from the assistant director of nursing. Covid prevented people from and caring for our loved ones.

“How I longed to hold her hand,” says Gillian. “I wanted to embrace her fragile body and brush her hair and put on her moisturiser or spray her favourite perfume.”

Anne lived well, and she died well.

“My mum’s pride pushed her into making very clear decisions about her care from very early on,” Gillian says. “She never wanted a pump to feed her and we all got to talk about a D.N.R. (do not resuscitate) in place.”

Gillian knows her mother was a very brave woman.

“I am reminded of reading Dr Seamus O’Mahony’s book, The Way We Die Now, and mum had very much chosen that journey from the outset with an illness bravely borne. In the end, mum died of a heart attack.”

How is dad these days?

“He is 87 and he needed his knees replaced,” says Gillian. “Now he’s gone past that option because he was so taken up with mum.”

Her parents had an enduring love.

“They would have been married 60 years on St Stephen’s Day this year.”

The years don’t dull the pain of losing someone who is part of you.

“Mum is gone four years now,” says Gillian.

An estimated 18,000 people live with Parkinson’sdisease in Ireland, a number on track to double by 2040.

Gillian points out: “A healthy lifestyle is crucial in helping stave off Parkinson’s. A good diet, exercise and regular physio for older people, all helps. People can live well for over a decade with Parkinson’s if they adhere to those things.”

Gillian is brave in sharing her personal story.

“I will always miss mum,” she says. “And I know that having a community nurse, Charlotte Deasy, now appointed in the community by Parkinson’s Ireland, can only be a good thing.

“Having more resources and accessibility for the community is wonderful. I am delighted.”

The service, based in Carrigaline, is by appointment only, which can be requested by phoning 1800 359 359 or emailing [email protected].