'I was quite angry with my husband for dying... it was our worst fear — how would either of us cope on our own'
Caroline Roche with her her daughter Helena at their home in Raheny village, Dublin. The 63-year-old is the sole carer for her daughter since her husband Mick died in May. Picture: Neil Michael.
On the evening of Tuesday, May 10, Mick Roche turned to his wife Caroline at their home in Raheny and suggested they both look into what would happen to their daughter Helena if one or both of them died.
Their daughter, who is now 31, has Down syndrome, autism, epilepsy and mobility issues.
She also has a number of challenging behavioural issues.
As a cancer survivor who had also survived a stroke, it was perhaps understandable the 62-year-old electrician should start the conversation.
But much to everyone's shock, he suffered a heart attack and died two days later.
Speaking from her home in the North Dublin village, the mother-of-four said: “The really strange thing is, we actually had the conversation two days before he died.
“We were sitting on the sofa.
“My daughter Helena was sitting on the other sofa, and Mick said to me, ‘We're going to have to do something about her. What would happen if anything was to happen to either of us?
“He said: ‘She'd be just devastated, and you know it would be really difficult’.
“I was like, ‘yeah, I must look into it’.
“I actually rang the social worker the following day and told them we were thinking about her future and what will happen, and I said we'd like to start getting the ball rolling and literally, then the day after that, he collapsed and died.”
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She added: “On the day, he was actually supposed to be coming home to bring Helena to a drama class, and I was getting really annoyed with him because he wasn't answering his phone.
“Then I got a call from a friend of his to say that he'd had some kind of a turn, and I was still like, ‘why is he not answering the phone?’.
“So then he said, ‘oh, somebody's going to call you’.
She said she then got a call from a paramedic "but he kind of threw me because he asked ‘is there somebody there with you?’".
“When he asked that, I thought, ‘oh, that's not good’.
“He was also asking me, in the present tense, ‘does Mick have any health conditions? Is he on any medication?
“I told him about his past issues, and I told him what medication he was on because of them and I just asked ‘so, how is he anyway?’.
“I’ll never forget his reply. He said ‘I'm afraid it's not good news. He's passed away’.”
However much Caroline, 63, loves and adores her daughter, she admits raising her has been very "challenging".
The fact that she now faced looking after her on her own, without her husband, left her with mixed emotions.
As well as grief over losing her husband of 35 years, she also felt anger.
“When the social worker heard my husband died, she came back to me and she said, ‘I can't believe you had that conversation’ and I was, like ‘I know’.
“I said ‘gosh! and now, what we were dreading happening has happened’.
“You know, this really was our worst fear — if anything happened to either of us, and how would either of us cope on our own, whoever went first.
“If anything, I was quite angry with my husband for dying, you know?."
She pauses, her voice trembling with emotion.
Then, looking back at what went through her mind at the time he died and as if she was addressing him, she continued.
“He was obviously loved but you know, anger can come into it.
“I was like, ‘thanks a lot’, you know” And ‘what? You got to go first?’.”
She is equally honest about her own feelings towards her daughter.
“When she was born, I felt like it was a life sentence I'd been handed,” she said.
“I had a very negative approach to her. I wasn't, you know... I didn't accept it too well for a good while.
“But then she really grew on us, you know? She was cute and she was funny, and then, you know, you're doing what you're doing for any of my other children.
“I've kind of learned to accept and love her as she grew up.
“Sadly, however, when she's getting older, and you see all the other kids overtaking her, and she's suddenly not like all the other kids. She's way behind.
“The other kids are moving on through all the milestones — they're getting boyfriends, they're going out to nightclubs and what have you.”
As to life today, Caroline says she just feels worn out and exhausted almost all the time, and her own mental health has suffered.
“Now, as I feel burnt out and mentally drained, that feeling of being handed a life sentence has returned,” she admits.
“I have spoken to other people who have been widowed also.
“They talk about the grief and the awful loneliness, especially at night.
“But when Helena goes to bed, I don’t feel lonely. I just feel a sense of freedom to even have an hour of peace and alone time.
Caroline says she wants Helena to enjoy her life in her new forever home before her mother dies.
She met Before We Die founder Tony Murray at Helena’s social club last October.
He had organised a meeting with the intention of setting up the campaign.
“I attended that meeting and was saddened to see so many families with the same concerns for their loved ones as I had for Helena,” she recalls.
“Families shared the most heartbreaking stories. I was also encouraged to see so many people eager for change.
“We were no longer willing to put up and shut up. We want things in place for our loved ones before we die.”
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