It’s an image that captures a lifetime — a mother standing at her daughter’s bedside and time slowly ticking by.
“You want me to be a little girl again, don’t you,” Mary McDonnell says to her daughter, Sinéad, who is lying in the bed and who, turning her head, responds: “Yes.”
Mary isn’t a little girl and in June, she will turn 80. Mary’s little girl, Sinéad, is 54, and has spent much of her life in this position, in the bed, mentally alert and engaged but physically prone due to the profound cerebral palsy that has affected her all her years. Suddenly, time is speeding up for everyone.
Mary, a former Cork carer of the year, is her daughter’s primary carer, but the pair can’t shut out thoughts of mortality any longer.
It’s not just the upcoming birthday but the mileage gained over the years that has brought them to this point.
Mary has been in the wars of late, bouts of ill health and a few scrapes, not least a day last year when she ended up being pitched into the blossoms outside their home in the Cork suburb of Douglas.
“In the rain, her wheelchair slipped on the wooden one [ramp] we had and I was thrown into the flowerbed,” Mary says, recalling how Sinéad was alarmed at what happened. A new metal ramp was put in, paid for by Mary.
The sign on Sinéad’s room displays the words ‘Fáilte Romhat Isteach’ and it is certainly a welcoming, warm environment, kitted out for her purposes, with plenty of light streaming in the windows and framed photo collages of relatives on the walls.
It’s a place where Mary spends much of her day, although sometimes other things get in the way.
“I have asthma and a bit of COPD and a bit of a bronchial thing,” she explains, reaching for the word before it finally comes to her.
“Emphysema!” Last December, she spent six days in hospital, an unscheduled and unwanted break away from daily life.
“My breathing was very, very bad, and I went in and saw the specialist and it was so bad he advised me to go in and not stay at home that night because he said I might not wake up the next day,” she recalls.
“So then I have a huge problem.”
The issue was having to quickly organise care for Sinéad while she was away. As many carers will tell you, this isn’t easy at the best of times.
Mary rang around the various agencies, in the style of a desperate US election candidate drumming up campaign contributions.
“It was a rush,” she says. “It was upsetting because I needed it badly.”
Agencies, already under pressure with other services and requests, told her they couldn’t take Sinéad at short notice but while it was eventually resolved, it again highlighted the lack of resources in the sector.
Sometimes the facilities are there, but staff aren’t available to keep them open for as long and at the times that suit families.
“I felt cross and I was upset that I had to go to these lengths to have her kept in so that when I came out I had more time for respite,” Mary says, referring to the emotional toll of these episodes.
“It’s sort of typical of family carers and high care — you are sort of caught. You are nearly afraid to get sick.”
Today Mary doesn’t look ill at all. Immaculately dressed, she seems spry and alert.
Her role as a high-profile carer is one she takes very seriously, and explains the notes she has made in advance of our meeting so that she can remind herself of issues she wants to arise as a de facto spokesperson.
She mentions pensions and the removal of the bereavement grant and the support that had been in place for phone landlines.
The carer’s allowance is a bone of contention, particularly in Mary’s case as she is defined as a half-carer, and so gets half the allowance.
She refers to Ireland’s non-ratification of the UN Convention of the Rights of Persons with Disabilities, and the imbalance between the service carers perform for the State, in terms of saving it huge sums of money, and the paucity of services and support.
But it’s respite that is the recurring bugbear. This newspaper reported last year about how Mary had suffered a “100% cut to my respite” following notification from Cheshire Ireland that Sinéad could no longer be facilitated at its St Laurence centre on the outskirts of Cork City.
Fourteen other families were also affected by the move by Cheshire Ireland to limit respite provision following a critical inspection report by Hiqa.
According to Mary, the situation has not improved almost 18 months on.
The HSE said it understood the family received respite services several times a year from two agencies and a spokesperson added: “We absolutely recognise the importance of respite, and we are happy to attend a meeting with the family in relation to care needs.
"As respite is not currently provided through Cheshire respite services, the CHO (Community Healthcare Organisation) has worked to ensure that families have their respite needs met, but this process has not been perfect and we are still working to resolve the issue.”
As Mary points out, there are also few beds available in long-term residential placements either. In any case, Mary is not keen on the idea of Sinéad living anywhere other than her own home.
Such is her level of disability, any notion of independent living, even with supports, is a “non-runner”. As she puts it, “Sinéad would hate change”.
She’s happy with the care she is receiving now, and the assistance of home helps and people like Sandra, who as we speak, is whizzing around the kitchen preparing a meal.
“If they could, introduce a Fair Deal-type system to keep people in their own homes,” Mary says. “We always have to fight for things.”
There is respite of another kind in the friendships Mary forged more than half a century ago and which endure to the present day.
Once a month, she and her fellow ‘Dunlop girls’, who all met when working for the company in its Cork HQ, meet for lunch.
Mona Lynch, 76, is among them, and she also attends another regular lunch date, this one dubbed the Wilton Wanderers.
Just last week, the group met for food at the Department of Tourism and Hospitality in Cork Institute of Technology.
“Wilton Wanderers — it sounds like a soccer club,” Mary says as she poses with Mona and their friend Bernie Moran from Bishopstown.
Bernie estimates that between them they have 240 years on planet Earth. It seems a case of lives well lived.
According to Bernie: “Mary has never, ever made me feel bad when I’m out playing golf or anything like that, she never says ‘oh lucky you’.”
Mary quickly chips in dryly: “I am a saint.”
Bernie’s having none of Mary’s self-deprecation. “She is, and I mean that sincerely. If you ring her up to go to a concert she is the first one there if she can go.”
If she can go. Back in her home in Douglas, she had asked the question, without any element of sadness, “How much longer will I be able to do this?”
She wasn’t referring to any hardship associated with caring for her daughter, the hours spent working for and with her, the time at her bedside.
It was thoughts of the unlonged-for day when she isn’t there.
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