Raw deal for carers: ‘It would change if the public knew — what was our problem could become yours’

Mary McDonnell, who spent 54 years caring for her daughter, tells Noel Baker that you never become an ‘ex-carer’.

Raw deal for carers: ‘It would change if the public knew — what was our problem could become yours’

When the moment finally came it was unexpected, so quick it almost caught everyone by surprise.

On October 18, in her own bed, in her own home, and surrounded by her parents, her aunt, and a family friend, Sinead McDonnell passed away, aged 54.

For Mary and Denis McDonnell, the death of their only daughter brought sadness and grief — no parent ever wants to lose a child. Yet, sitting at their kitchen table in the Cork suburb of Douglas, with the drizzle falling outside, they admit they also feel another overriding emotion: Relief.

“I hardly had time to say goodbye to her,” Mary says. “She was gone in a little puff.”

Mary McDonnell is now 80 and her husband will reach the same milestone in just a few days.

“I always say he married an older woman,” Mary jokes.

“I was talked into it,” Denis replies with a smile.

As they sit side by side, Denis seems the older of the two. He has had some recent health issues, as has Mary.

There’s a catch in her chest as she speaks, as though the act of breathing has to be warily measured, a result of the chronic obstructive pulmonary disease that has flared up in recent days.

Maybe their own health concerns can come more sharply into focus now that Sinead, who has been the subject of their care and attention for more than half a century, has passed away.

As Mary puts it: “When I feel I miss her, I say to myself we shouldn’t because she was saved an awful lot.”

Sinead had profound cerebral palsy, was doubly incontinent and suffered a number of other ailments that necessitated 24/7 care. For the vast majority of those hours, years, and decades, it was Mary who was on hand to provide it.

Apart from it being its own reward, her efforts also secured her the title of Carer of the Year. She has consistently lobbied, cajoled, advocated, and generally poked away on behalf of all the other carers working day and night around the country, particularly on the issue of respite care and the broken promises of successive governments.

All the while, she spent countless days and nights organising Sinead’s care, changing bedclothes, tending to her needs and, most importantly, spending quality time with her girl.

Sinead had never been without profound disability. Her life was the only life she knew, yet she was intelligent and, at times, acutely aware of the importance of the support network around her.

As her parents grew older, Sinead’s own sense of anxiety about the future increased. According to Mary: “It was an overwhelming relief when she died because our huge fear was I would die before her.”

Denis chips in. “She was hugely aware. She was terribly afraid — she was smart enough. The fear in her eyes was an awful thing to see.”

Mary agrees that looking after Sinead was, in effect, her life’s work.

“Twas. I couldn’t fit in much more, particularly towards the end, since 2008 I suppose. She began to suffer excruciating pain and spasms.

“She paid a price for the pain being sorted. She was very sedated, to an extent where I felt at times like her personality was eclipsed, if that’s the right word. She had a great sense of humour and a sense of the ridiculous.

“I often felt when I was sitting next to her in the bed that she had lost it. The rapport. At the same time, she never forgot to express, nearly on a weekly basis, ‘what will happen to me if you go or die before me’. I wasn’t going to express my fear to her. I would say you know I am going to look after you as long as I can.”

After that, the possibility of a place at the Cope Foundation was mentioned, since Sinead was familiar with it and any care would have been phased in over a period of time. In the end, it never came to pass.

“She did have three visits to hospital to have this pump implanted that carries drugs under the skin to her spine,” Mary recalls. “That became infected so she went in again. It didn’t heal then so she had to go back in again. She came out, and it didn’t heal. Had she not died, she would have had to go back to hospital again and it wouldn’t have been very pleasant.

“She had skeletal abnormalities, a fully dislocated hip and severe curvature of the spine and that, in latter times, caused her huge discomfort. There was a lot of turning her and moving her, particularly at night.”

Mary McDonnell, Douglas, Cork, with her daughter Sinéad in February 2016.
Mary McDonnell, Douglas, Cork, with her daughter Sinéad in February 2016.

Sinead’s death seems to have come swift and gentle.

“It was very quick,” Mary says. “It was painless. She was only unconscious a very short time, 20 minutes. I had been speaking to her but she was unresponsive. I thought she said ‘no’ when I offered her water, but I can’t be sure.”

Then came that “little puff” and she was gone.

“It was hugely upsetting for us but I think the fact that she was saved so much I feel is a great relief,” Mary says.

The screensaver on the family computer is a photograph of mother and daughter, and Sinead’s room off the kitchen is relatively unchanged, but there’s a new bed in there now.

Sinead’s special profile bed was reclaimed by the HSE not long after her passing, along with items such as her shower cradle and sling.

“They took it back so that was great, so we didn’t have it around the place,” says Mary.

She refers to the many years where the house was regularly visited by carers, personal assistants and the public health nurse, adding: “We fought hard for what we got but we got it.”

Now Mary has a carer due to her own problems and she refers to her husband’s health issues.

“When you get old that is what happens,” she says.

Her breathing aside, it’s hard to detect any dulling in Mary’s movements. She moves steadily through the kitchen in her fire-engine-red jumper, filling the kettle to make a pot of tea and rousing Denis from his spot in front of the television.

Nor is there is any holding back when it comes to the raw deal offered to carers by the State. The McDonnells have featured in these pages before, not least when Sinead’s respite provision at the Cheshire Homes St Laurence centre was pulled almost two years ago. Mary believes the government of the day is ultimately responsible.

“It’s a disgrace that respite is cut to such an extent some parents can’t get it at all,” she says.”We are the only social welfare recipients who work for our allowances. It’s a disgrace. They take advantage of us. They know we aren’t going to desert our loved ones.”

She wants the Fair Deal scheme amended to include care in the home and she has spoken with other carers in a similar situation, including an 82-year-old woman in Dublin with Alzheimer’s who is caring for her 52-year-old daughter, who has an intellectual disability.

“We live in hope but it’s backwards we’ve gone,” Mary says. “Things are worse than they ever were.

“There would have to be a huge change. It would be great if the general public knew — what was our problem could be theirs. A stroke, getting hit by a bus — anything could go wrong and anyone could be a carer. You’re thrust into it on their own and left floundering around looking for help.”

Since Sinead’s death, Mary has kept herself busy. Over the years she has attended regular meet-ups with friends, including her pals from her days with Dunlops in the city.

“I went to Kerry a month ago with the Wilton Wanderers,” she says. “Some of my own friends are in that too. That was very nice. I was going to go this Monday and Tuesday to Killarney but Denis had not been well and my breathing wasn’t too great.

“I do have great freedom, but relief is the uppermost emotion. I have marvellous friends, great relatives. I feel I am very lucky.

“I will join things. I am not the type of person who can sit down and put my feet up. I will rest but I will be active. I am coming to a point in my life — we are both 80 or almost 80 and it became a bit harder.”

Sinead was waked in the house and around 170 people showed up that night, including people from Cope, Enable Ireland and the hospital. As Mary says, the sense of loss was leavened by a sense of relief, and so it’s not surprising that instead of keeping Sinead’s room as some sort of shrine, the family intend to give it a makeover.

“Ultimately I hope to turn it into an apartment,” Mary says.

Sinead’s death notice requested no flowers, with donations in lieu to Enable Ireland. In the scrupulously tidy family home, the lilies in the hallway are fading, the leaves dropping onto the table. It seems as though Sinead is both simultaneously present and absent. It turns out her journey isn’t quite over yet.

“Because of the weather we switched to cremation,” Mary explains. “The box is inside in the undertakers. The weather is blooming awful. She wants to be buried in her grandmother’s grave in St Mary’s.”

It turns out Sinead had actually asked her granny if this was OK when she was still alive.

“She decided she would go with the last granny who was still alive,” Mary says, referring to Denis’s mother, who died aged 94. “And she [Sinead] gave me the reason so I wouldn’t be upset she didn’t choose my mother.”

Always respectful of Sinead’s needs and wants, this final task is all that remains to be done.

“Funnily enough, I don’t feel like doing it,” Mary admits, almost as if she’s a little surprised at what she’s saying. “Putting her ashes into the grave.”

Then, as if in the act of convincing herself, she adds: “I have to arrange it. I just don’t like the idea of it.”

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