Mona Lynch has been a close friend of Mary McDonnell’s for nearly half a century. Currently studying an MA in creative writing at the age of 76, she writes about the life Mary has had, and what the future might hold for her and her daughter, Sinead.
BIRTHDAYS are in the air. Mary McDonnell is 80 in June and her daughter Sinead has just turned 54.
When Sinead was 50, Mary was awarded the Cork Carer of the Year. On that day Sinead, who is mentally alert, said: “In four years’ time you will be 80 — who is going to look after me then?”
Almost 80 now, Mary sleeps with a baby alarm beside her bed. She has new health problems herself. She suffers from overlapping pulmonary ailments, asthma, COPD, and emphysema.
She has 60% lung capacity. She brushes this aside as she struggles for breath to tell me of her typical day with Sinead. We sat at the kitchen table for the interview. Birthday cards peep from every shelf and window sill.
As a schoolgirl, she played camogie in the South Presentation Convent. She learned to swim in the Eglantine baths. Mary was full of fun, always game for anything.
She would cycle down to Crosshaven from her home on Friars’ Walk with a gang of friends. They would climb into Fort Camden and dive off the pier. They would sometimes swim from Graball bay to Church Bay.
She was a victim of the TB epidemic of the 1950s. She spent two years in Sarsfields Court Sanatorium suffering from pulmonary tuberculosis. She had a left lower lobectomy and was treated with a revolutionary new medicine called PAS and streptomycin.
I met Mary after she had recovered and trained in Dublin as a comptometer operator in 1959. We both worked in the large, airy accounts office of the Irish Dunlop Company. She was still full of fun, and particularly loved borrowing cars; not having one of her own, she would drive anyone’s car.
She got married a year before I did, but we kept in touch. Five of us from that office meet every month since we left Dunlops.
We gave up meeting in the evenings because by 9.30pm, Mary would have nodded off with exhaustion. Now we meet for lunch. We organise it around Mary’s caring schedule.
After she got married, Mary became pregnant with Sinead right away. When Sinead was born she was so ill she wasn’t expected to live, and was baptised immediately.
They discovered that Mary had been transfused with O positive blood instead of B negative in Sarsfields Court after the TB operation, which gave her antibodies.
This was not discovered until she was pregnant, but her baby did not get the necessary transfusion at birth in time to deal with the antibodies, so she suffered from lack of oxygen.
Sinead was so jaundiced they did not expect her to live but she did. She was a beautiful baby with blonde hair. It took some months to realise that she was not developing normally.
I recall sourcing small bags full of dry sand to place around Sinead to help her to sit up. Eventually, Mary took her to a paediatrician who told her her baby had severe cerebral palsy. She would need care for life. He also said she would have a very low mental capacity.
The doctor was correct except for her mental capacity. Sinead has always been very bright. Mary never needed a calendar, Sinead could rattle off birthdays and appointments.
Now the amount of medication she takes has dulled her mental faculties. Sinead is at the very high end of caring. Mary does have a helper by night, but it takes two people to handle Sinead. She weighs 10 stone. Mary weighs just over seven.
Mary’s day starts at 6.30am when Sinead has to be showered after the night, which involves two carers, a sling, and hoist.
If Sinead was in residential care, health and safety would demand that two people would operate that hoist, or it could not be used. At home Mary is expected to do this work, on the occasions that she doesn’t have help.
Dressing Sinead is a long process due to involuntary muscle spasms and skeletal abnormalities. Also with cerebral palsy you can have what is called lead pipe rigidity. You have to ease her into her garments as her bones can break so easily. She is in plaster right now due to a fracture in her wrist.
Feeding comes next. It involves tactile and verbal prompting. With every half spoon, she has to be prompted and coaxed to swallow.
Tactile prompting involves stroking the muscles in her throat while verbally prompting her to swallow. Sometimes rubbing her top lip might encourage her to swallow. If she gets tired you have to stop for 20 minutes.
She has tube feeding of liquids for rehydration and liquid medicines. To deal with pain she has a baclofen pump which was surgically inserted under the skin on her right hip with a catheter leading from it into her spine.
Sinead is doubly incontinent. With cerebral palsy the bowel can become lax, so Mary has to use discretion in bowel management with phosphate enemas and Movicol.
Sometimes she has problems with impaction. She has a cocktail of tablets morning and evening to cover pain and spasm. Mary organises them into daily doses in a special container.
After washing, dressing, and feeding, the helpers hoist Sinead into the wheelchair, another major undertaking. She had a partially dislocated hip in her teens.
She spent three months in plaster with an iron bar between her two legs in an effort to fix it. Unfortunately, when this was removed it was totally dislocated.
This, together with severe scoliosis, means positioning her in a wheelchair is a difficult process. She finds sitting and lying painful.
Designing a wheelchair for her windswept outline was undertaken by Stylite designs, together with the physiotherapist and occupational therapist at Enable Ireland.
Sinead is collected at 9am to go to Enable Ireland, an adult training centre in Little Island. She sleeps a lot during the day, but they do hand-over-hand craft work with her, guiding her hands — she loves it.
She loves the company even though she can’t participate. Her wheelchair is plugged in every night to be charged.
I ask Mary if the HSE was supportive. Sometimes there are problems.
The HSE unceremoniously pulled the plug on respite. Mary was packing Sinead’s case to go to Cheshire Home to get her usual respite on December 7, 2015. However, on December 2 she was told the HSE could no longer fund nurses there for respite. Hiqa deemed the place unsuitable.
Mary received a letter which informed her that Cheshire Home was working with the HSE to find alternative arrangements for the individuals affected. That was December 2015. She has heard nothing since.
There is a plan for independent living in the community for the service users, but, according to Mary, “independent living will never be a runner for Sinead”. She is totally dependent and vulnerable.
Respite is essential for carers and is no longer available to Mary. Her sisters want to take her to Switzerland for her birthday for one week, but it may not happen as she is having difficulty getting cover. Carers save the Government €4bn every year, which leads me to ask Mary what she gets paid for her 24/7 service.
“I get a half carer’s allowance of €122 per week,” she tells me. They recently gave an increase of €5 per week. Mary got an extra €2.50.
“I like Sinead to look nice, so I tong her hair and keep her nails nice,” says Mary.
It was obvious she likes style, she herself was wearing a warm red sweater with a white peter pan collar and soft grey slacks. She co-ordinates all of Sinead’s clothes. Colours matching, material soft and pliable to facilitate dressing.
“My mother always had rules about our clothes, when we came home from school. My two sisters and I, three little girls, we had to change our uniforms, put on pinafores.” recalls Mary.
“I wish I had more energy to keep up the fight for carers,” she says. “That’s the only problem I have with ageing.”
There are two things Mary would wish for: To outlive Sinead and to get an advocate for her. Someone to speak up for her, to be her voice.
“Can you imagine one gobshite who wanted to get a blood sample from her, he wanted to put a needle in her big toe? I told him where to put his needle,” says Mary. She went on to explain that she knows a disabled person who has an advocate who sleeps on the floor beside her bed when she is in hospital.
Sinead now is no longer able to speak up for herself. In 2010, when she went to hospital for the pump implant, the hospital was very busy and the doctor suggested that she come back in the new year.
Sinead herself said “No way”, Mary recalls with a chuckle. “I am not going out of this bed.” The doctor looked at her and said: “OK — Sinead has spoken.” Yet she has so much medication now for pain that she is drowsy and unable to focus.
Every three months, Sinead’s wheelchair has to be serviced. Helpers do come in now morning and evening to help Mary get Sinead ready and help settle her at night. She values and appreciates the help she gets from her carers and from her PA.
Mary saw a consultant recently as her chest was bad, he told her he must get her into hospital right away. Mary said no, she was a carer. He told her if she didn’t come in today she might not be there to care tomorrow.
She insisted, and they provided a wheelchair to take her out to her car. She drove home to get on the phone to try to organise emergency respite care for Sinead, and, with help, she prepared a large case of necessities for Sinead’s time away and also got her own belongings ready for hospital.
Family Carers Ireland, formerly the Family Carers Association, organises weekends away and Mary would love to be able to avail of these. She told me she would like to travel as she loves people and company.
She saw the opera Aida recently as evenings out can be managed. She particularly loves family gatherings. She has four cousins in Dublin, aged 84 to 94, and when they can get together she enjoys the reminiscing. They are good fun and good company.
She loves clothes, style, and shopping and she has no regrets for the things she missed, as Sinead is her priority. She is able to switch off from anything else. She has accepted her role and says she either parks or buries other concerns.
Her two frustrations are (a) with the Government and its lack of services and (b) with her own diminishing energy.
On Tuckey St in the centre of Cork centre is the office of Peter Cox, area manager of Family Carers Ireland, Cork branch.
His face lit up when I mentioned Mary. He told me she is one of their best ambassadors. She has created awareness around carers.
He has great admiration for the way she and her husband Denis opened up their home to the newspapers and media. She is excellent at interviews. This is of great benefit to other carers; after all, she has been doing the caring job for 54 years.
He considers her very open-minded for her age. Her mother-daughter relationship with Sinead is extraordinary. Sinead always looks well groomed. Communication between them is like that between friends.
Mary made one heart-breaking revelation to Peter, one no mother should have to make, that she wishes Sinead would die before her.
Peter mentioned that there are 260,000 carers out there and the 2016 census will reveal the statistics on the number of carers in the country on November 5 next, when they expect a much higher number to be revealed.
Caring is lonely and isolating, but Mary is grateful to the multidisciplinary team in Enable Ireland and all the others who do so much for Sinead.
Mary, at 80, is up at night, and busy by day, even when Sinead is out. She is organising meds, doctors’ appointments, and dealing with bureaucracy. This should be her happy time, time for relaxation.
Peter said there are thousands of Marys in this country getting no recognition from the State. He said the half carer’s allowance is a joke as there is no such thing as giving half care. Mary, for instance, is on call 168 hours per week.
In 2012, the then Family Carers Association presented the government with a National Carers’ Strategy document. It contains 46 items all dealing with carers.
It has not been implemented. A special committee of carers has been set up, a report is expected from the government every year, yet there is very little progress to report.
Ireland signed the United Nations Convention on the Rights of Persons with Disabilities in 2007. We are the only European country who hasn’t ratified it — clear evidence that people with disabilities are not a priority with this government.
Are they waiting, because if they signed it they would then have to give people the services they deserve, which are sadly lacking? Instead, carers are told “to wait while we make things better”.
The association is lobbying constantly for respite care in the home where the facilities are located. If it would administer the nursing home Fair Deal scheme in the private home, it would solve a lot of problems.
Hiqa is vigilant, doing inspections and closing down services that are deemed not up to standard. This would be excellent if suitable services or any services were then put in their place.
Carers are allowed to work for 15 hours a week if they can manage it. The Community Employment Scheme is available to people who can work 19½ hours, so carers don’t qualify for this.
Peter Cox says it is wonderful working with carers. They are nurses, doctors, partners, friends, and companions to their people for whom they care. He said it is a pleasure working with people like Mary as no one knows as much about cerebral palsy and the ageing process as she does.
She is so clued-in to all of Sinead’s needs, her diet, her meds, she can name them all. She is not afraid to question doctors, nurses, or medical teams in a nice, polite, non-aggressive manner.
Mary is doing all she can, but what happens if she doesn’t wake up tomorrow?
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