Just over a year ago Paul Carroll was diagnosed with Motor Neurone Disease (MND). Within six months, his wife Lillian gave up her job to care for him full-time.
“I was 64 years old on the cusp of retirement and had never been ill in my life before,” says Paul. “The journey since then has been a bit of a rollercoaster. The disease has gradually reduced my ability to do ordinary day-to-day things which most of us take for granted. My wife Lillian is only 62 and loved her job in Brown Thomas but she has had to give that up to become my full-time carer. She has never once complained, and does it out of love. I know my illness has placed a heavy burden on her but she accepts me as I am.
“Having been a keen walker I now use a stroller to move around and a stair lift to get upstairs. I remember Lillian going down on her hands and knees to move around the house to see what needed to be moved for me.
“I have some difficulty swallowing which limits my choice of foods, but the most radical change for me is a severe deterioration in my speech. My family have also been of great help driving us to clinic and research appointments and also giving us support at home. Lillian’s family are only a phone call away, too. We have also had home visits from two MND nurses whom we would now count as friends.
“I would never claim to have had any aptitude for DIY, but Lillian would testify that I was fairly handy in the kitchen and I also really enjoyed gardening. However, I am gradually becoming more and more dependent upon Lillian and others for day-to-day things. That can be frustrating, but I try to accept this as one of the things I cannot change. I am regularly being reassured by all those who help me with the words, “no bother”.
‘We are each other’s best friends’
“I must honestly say that the help I have received from the community care professionals has been tremendous, but my main concern is Lillian. When I got the diagnosis, we walked out of the doctor’s office and just looked at each other and fell into each other’s arms and cried. ‘We’ll get through it,’ she said and we walked out hand in hand.
“I am a very practical and logical person and never sought attention so asking for help has been a challenge. As my speech began to be compromised and my balance started to waiver, I decided to put myself forward for research. There won’t be a cure in my lifetime, but at least I can help someone down the line. When we first went to the MND clinic 13 months ago and saw how badly affected some people were, I just wanted to run as far as I could. We just looked at each other, thinking ‘I didn’t belong there!’ But now my ability to move has diminished and I can just about pick up a cup with two hands.
“My wife takes care of me so well, and she never complains. We have no children, and we are each other’s best friends. She helps me wash and get dressed, and she is usually good at working out what I say. Although we can be roaring laughing when she gets it wrong! I am pretty determined, and so I’d rather someone tell me they don’t understand rather than treat me like I’m stupid. But with MND you have to keep preparing for what’s ahead and you dig deep down in yourself to get the courage, hope and resilience and the love will come out. I couldn’t do that if it wasn’t for Lillian. She knows that although I have changed so physically, I am still just her Paul.”
Home support
– A recent report by the Citizens Information Board revealed some older people cannot secure the supports they need to stay in their own homes
– The 2016 census found that there are over 195,263 carers in the State – a 4.4 per cent rise since 2011. Of these, 3,800 were children under age of 15
– In 2016, the Irish Motor Neurone Disease Association’s three nurses provided support to 456 families and fielded over 6,646 calls and emails from health care professionals
– Ireland’s ageing population is growing by 25,000 people every year
– The recent Health Capacity Review projects there will be a 70 per cent increase in demand for homecare over the next 15 years without major health reform
– The HSE recently conceded that its delivery of 10.385 million home help hours last year was “under target”. However, 19,807 people got a home care package, which was “in excess of its target of 16,750”
– In 2018, the HSE expects some 17.094 million home support hours to be provided to 50,500 people, an increase of 754,000 hours.
– June is the national MND awareness month, with “Drink Tea for MND 2018” being the flagship event to raise awareness and funds. To organise your event, email fundraising@imnda.ie or freefone 1800 403 403. Or, to donate €2, text MND to 50300.
