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Tuesday 16 January 2018

'I don't have a quality of life - I'm planning my own funeral' - MS sufferer Kate Tobin

Kate Tobin on The Ray D'Arcy Show. Image: RTE
Kate Tobin on The Ray D'Arcy Show. Image: RTE
Kate Tobin on The Ray D'Arcy Show. Image: RTE
Amy Mulvaney

Amy Mulvaney

A woman who is suffering with primary progressive MS has spoken about how she has "no quality of life" and wishes to end her life if her condition worsens.

Kate Tobin told The Ray D'Arcy Show that she was diagnosed with MS five years ago, and was told in November that the disease "had run its course."

"I could last 18 months or two years, and if the disease progresses faster, it may only be months," she said.

"After about three days of thinking about it [dying], I sort of go used to the idea."

Ms Tobin, who used to work as a palliative care nurse and as a nun, detailed how her diagnosis has affected her life.

"I don't have a quality of life. I've got no independence left, so I can't even have a daily shower, I have to depend on my carers to shower me, and that could be in the afternoon or it could be in the morning.

"I can't cook for myself, I can't do my washing, my ironing. I can't go out to the shops.

"One hundred yards is my maximum for walking. I can't go shopping. I mean what I'm wearing tonight, I was given as a gift because, I'm a size 12-14, but I can't shop. I can't go into bookshops. Some days I can't speak, so I've got two priorities left, my speech and my vision, but if any of them was to fail, then that's the quality of my life gone."

Kate Tobin on The Ray D'Arcy Show. Image: RTE
Kate Tobin on The Ray D'Arcy Show. Image: RTE

Ms Tobin told of how she has decided to end her life when her voice and vision goes.

"I'll lose the ability to feed myself and have to be artificially fed and they normally go through the stomach. I have already decided if that's the option, then it's the patient's choice to refuse, so I won't let them feed me artificially.

"I would die of hunger, but that's better than suffering the way I am. I have it written in a book that I do not want to be fed artificially.

"If I have a cardiac arrest or anything, I don't want to be resuscitated. I don't want anything, I just want to be pain-free and comfortable.

"In one sense, it would be an assisted suicide, but if I had enough morphine, I would probably do it myself and they would find me dead in bed one morning."

Ms Tobin has gone on to arrange her own funeral, choose her plot and where she will reside when she passes.

"I have a saying on my Facebook that says, 'when I'm dead, I'm gone driving with Jesus,' and I so want that put on my tombstone."

She also spoke about the invalidity pension of €198 she receives each week.

"I get the money on a Thursday and my bank is €0 in Friday. I've nothing from Friday to the following Thursday."

The special furniture Ms Tobin had to have fitted in her home has left her with €17,000 debt.

"It's a debt I can't afford to pay. Thirty five euro comes out of my pension a week to pay off the debt."

This year, Ms Tobin plans to read 500 books for the MS Society and the Irish Dyslexia Association, and has read 98 books so far.

Visit Kate Tobin Charity on Facebook for more information and to donate.

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