Clonroche woman campaigning for the right to die
Published 16/01/2016 | 00:00
A Clonroche woman who suffers from Multiple Sclerosis has challenged the Taoiseach to spend a day living with her to see why she wants to be given the right to die.
Fifty-year-old Kate Tobin was diagnosed with MS four years ago but the condition has advanced quickly and now she can barely walk. Kate, who is originally a native of Waterford moved to Wexford a year ago, is looked after by carer John Kelly.
She said that she finds each day a constant struggle and some days she is forced to sit in her night clothes because she is unable to dress herself.
'I can't walk at all without a walking frame and even then I can only go about 200 yards. For anything further than that I need to use my wheelchair. My food has to be cut up for me. My drinks have to be thickened. I'm incontinent. My speech is affected. My vision is slightly affected and my hearing is worse too. It takes me a long time to answer questions, sometimes up to three minutes.
'I'm not saying I want to die right now but I want to be able to have the choice if it comes to it. I'm going to be catheterized in two months and if my swallow goes I'll become a long term hospital patient. If that happens I don't want it. Having to spend 24 hours a day in bed, having someone turning me, feeding me, the whole lot.
'I'm lucky now because Wexford County Council have allocated me an adapted home in the same estate I'm in now. That's all wheelchair accessible so I can try to keep whatever independence I have for a bit long. If I lose my independence and was put into a hospital I'd want the right to say enough is enough.
'As it is it's a struggle to manage. I only get €193.50 a week on invalidity benefit but I'll need around €8,000 to kit out the new house with electrical goods and furniture and the most I'll get towards that is €3,000.
'I'll have to try get a loan for the rest so I'll be €5,000 in debt. I've never had my own house before because when I was in England working as a cancer nurse specialist I always lived in hospital accommodation so had no need for my own things. As a palliative care nurse I know about the end of life so I'm not asking for the right just for the sake of it.'
Kate who never married has a number of siblings whom she see frequently but none live in Wexford. She had returned home to Lismore in Co Waterford six years ago to nurse her mother.
A year before she was diagnosed Kate began to notice that she started leaning to the left, often falling over. However she put it down to clumsiness. It was only when she developed a chest infection while working as a nurse to the elderly that she received tests for a suspected stroke which revealed the MS.
'It was an awful shock. I'm in a lot of pain constantly. I get spasms all the time. I've lost my fine touch movement. My skin is gone very fragile and use a pressure cushion.'
Currently she has a carer four days a week but this will increase to seven days a week when she moves into her next home. 'Some mornings it's too much for me to be able to dress myself so I just sit in my night clothes and read a book.
'I turned 50 in September but I feel like I'm 80.'
Despite appealing to Taoiseach Enda Kenny to come live with her for a day to see exactly the level of pain she's in Kate has heard nothing from him or his office. Nor does she expect to. 'I would just like for him to see what I go through on a daily basis and to see what it's like to live on €193 a week. I'm lucky if I'm left with €20 at the end of the month. I have to cut down on food and I'm not even thinking of how I'm going to manage with a debt of thousands.
'But getting the house is something very positive. I will have more independence and I know that the floors are soft if I fall when I'm alone.'
Kate was full of praise for her carer John who brings her to all her appointments. 'I do get out, I might be slow and pathetic but I do get out.'
After being told by her doctor to wear tracksuits which are soft on her skin Kate dreams of going into Penny's and 'blowing a fortune but I can't. I just can't afford to.'
Dignitas in Switzerland isn't an option either as she is too unwell to travel. 'I take 50 tablets a day just to get through the day', she said.