My mum’s right to die

The verdict this week in Mum’s challenge to the ban on assisted suicide was always going to be really difficult for us, whichever way it went.

Although it was the verdict we expected from the Supreme Court, hearing it made me realise that all the things Mum had fought so hard for have been stripped away. As somebody terminally ill with multiple sclerosis, this was the only choice she felt she had left. Now that's gone too, which is really hard.

I was so disappointed for her. Yet, if it had gone the other way, it is not as if there would have been any celebration.

I think I am in denial that she is ever going to go. You can read and hear all the reports saying she has less than two years to live, but you don’t believe it. I can’t imagine what life is going to be like without Mum; it has always been her and me.

She was only 17 when she had me in Strabane, in Co Tyrone, and in many ways we grew up together. It was another 14 years before my only sibling, Simon, was born. She was always the matriarch of the family, because she is the eldest of five children and had to take on a lot of responsibility for them growing up in Lifford, in Co Donegal. She was just 34 when she was diagnosed with multiple sclerosis. She is 59 now.

So much of this case has been about death, but we try not to talk about it too much. You can get to the stage where it’s all you think about, and really life is about living.

So when I am with Mum we try to make the most of every hour we have. She loves her garden at home outside Arklow, in Co Wicklow, and we sit out in it when we can.

She dotes on her seven grandchildren, and, because she is sitting and can do so little for herself, she is a fantastic listener. I reckon she knows my five children, who range in age from 11 years down to 17 months, better than I do, because she has time to listen to them. She just sits back and watches them from afar, observing the dynamics. I am so busy just coping.

Ending her life
The first time Mum talked to me about ending her life was 10 years ago, when my husband, Richard, and I were living in London and our twin boys were still babies. It was the first time she had lost power in her hands. Her partner, Tom Curran, had to feed her, and she was really scared.

She told me on the phone that she couldn’t go on. It was a shock to realise that she was suffering so much that this was what she wanted. We knew we had to come home to Ireland. Fortunately she did regain use of her hands for a period – she had relapse-remit MS – but each time she never got back to where she was.

We made sure the house we rented, in Dalkey, in Co Dublin, had a granny flat. Mum used to come up for weeks at a time, and it was brilliant. She was in a wheelchair, but we were still able to transfer her to an ordinary chair.

But her deterioration has been very rapid in the eight years since we have been back. She is now paralysed from the neck down and can do very little for herself. But her mind is as razor-sharp as ever.

In the spring of 2007 I was with her for a whole weekend while Tom was away, and we sat up at night chatting. That is when she said she was scared about her MS getting worse, and about not being able to do anything for herself, and she asked me to look into Dignitas, the group in Switzerland that helps terminally ill people to die.

We got all the information, and she was ready to go, but, thank God, we managed to change her mind. She would have missed out on so many years and all the younger grandchildren. We didn’t pressurise her. We said, “Wouldn’t it be so much nicer to die peacefully at home?” She asked what alternative she had. We had to give her a guarantee that we would help her, if necessary, when the time came.

One night in 2010 I saw a report on RTÉ that Dr Philip Nitschke of Exit International, a group that campaigns for the right to assisted suicide, was holding a workshop on euthanasia in Dublin the next day. I decided on the spur of the moment to go, because, even though we had told Mum we would help her, we didn't know how to go about it.

I didn’t tell her I was going. She uses a speaker phone and a carer has to hold it, and I didn’t want any of the carers to hear.

I remember sitting in the community centre on Mountjoy Square waiting for the event to start, and the next moment Tom walked in. Mum had begged him to come. He looked at me and I looked at him and we both sat there crying, holding each other’s hands, because we couldn’t believe we were there. Nobody wants Mum to go anywhere. But finding each other there really opened up the whole debate at home.

Mum told me last September she was thinking about taking this case, that something good had to come out of the pain and suffering. “I have to make a difference,” she said. And I know she was taking it to try to protect Tom and us.

It is frustrating, because Mum has been through psychiatric and psychological testing to show the court she is sane, that she is not being led and that the MS has not gone to her brain. She has come through it with flying colours. She has also written a living will, with a psychologist present, yet in this country living wills are not recognised.

Mum has such an active brain. She always wrote and painted. Now she has a scribe, and once or twice a week for the past year she has been able to get her feelings and thoughts down on paper. The plan is to compile them and publish them in the spring.

The same two photos have been trotted out in the papers during the coverage of the case, but nobody knows who she is. She is the most beautiful, strong, determined, focused, loyal and loving individual that anybody could wish to have as a mother. Full of energy. For me she will always be the mum who walked me down the aisle and gave me away. I was only 24, and she was 41, my age now.

I think she has come to terms with death – at least in the sense that on a logical, practical level she knows exactly what she wants for her funeral. She has a very strong faith and very much believes in the afterlife, which takes the fear away.

But she wants to live. This case was about her having the same choices, the same options as every other able-bodied person in the country. She has suffered so much and withstood so much pain – there will come a stage where she won’t be able to take the pain much more.

She is already maxed out on drugs, and she doesn’t want to live in a coma. What would be the point? Her fantastically alert mind is already trapped in a body that is so physically limited. How cruel would it be to take that a step further? As much as I can’t imagine life without her, I don’t want that for her. I don’t know how she does it. She never complains, ever.

Not going anywhere
Simon is getting married in August, in Waterford, and Mum is telling everyone that she is not going anywhere before then. During her latest chest infection, which started on St Patrick's Day, she and Tom put so much into getting better because of Simon. She is going to be there, come hell or high water.

Tom was doing everything; he was up at night trying to get the fluid off her lungs. He wasn’t sleeping either; he was shattered. His absolute and sheer devotion to her was humbling. I said to her if it hadn’t been for Tom she would be long gone, and she said she knew that.

One of my sons asked me the other day whether we would all be there when Granny dies. I explained to him, “We’ll all be there and we will get to say our goodbyes to Granny, and then you will go home with Daddy. Me and Uncle Simon and Tom will stay. You wouldn’t want Granny to die without Mummy holding her hand, would you?” “No, I would not,” he replied.

I don’t know if Tom and Mum will let Simon and me do this, but it is the way I would like to see it happen. I think we will just take the consequences.

She has given us life, she has given us everything, and the least we can do is grant her that final wish, if it ever comes. Of course, I pray that she will be taken peacefully in the night.

In conversation with Sheila Wayman