A Family’s Story of MND
We are the Kellys. My name is Shane and my parents are Christy and Mary. Six years ago this month our whole lives changed. My dad Christy retired on a Friday night and the following Monday morning was diagnosed with at first Bulber Palsy by a neurologist in the Hermitage clinic in Lucan. Talk about bad timing. That October was the worst month of our lives in many ways. I had just been informed that I was being let go from my job as a civil engineer, Dad’s brother John died suddenly and a very close family friend was killed in a car crash, throw in the largest banking crisis in history and a terminal illness diagnosis and you have our 2008 episode of reeling in the years cracked.
Of course it was not bulber palsy, after being referred to Dr Orla Hardiman later that month Dad was diagnosed with Motor Neurone Disease and our page in IMNDA Connect magazine was set in stone.
My father Christy was a postman in our local area of Killoran, Galway for over 40 years. He married my mother, a Mayo woman 34 years ago and had one son, me. Dad is a typical country man, loving his GAA and farming. He was your old style post man. Letter boxes did not exist on his route only back doors and kitchen dressers. The entire parish relied on him for information and the odd bit of juicy gossip, the women fed him and the farmers got him to block the odd gap. It’s funny how things change.
Six years after his diagnosis we are all still here and very strangely upbeat. Dad can no longer speak or write hence the reason we are writing a family story. There is just the three of us so when one member gets a blow like he did the shockwaves are hard and heavy. We all dealt with it in different ways, I tended to over exaggerate everything even getting to the stage where I began to get similar symptoms as my father. These symptoms were brought on by large amounts of stress and anxiety almost Psychosomatic and is perfectly normal as many offspring of people with terminal genetic* illnesses eventually discover.
My mother tended to gloss over everything and pretend everything was okey dokey. It worked for her and balanced my reaction out. Most importantly my father, Christy, got on with living. He did as much as he could while he could without an ounce of complaining. In fact, he still does! Having a patient in the house can create an invisible dark cloud but when the patient acts like Dad has there is a lot more blue skies than gloom.
Don’t get me wrong, we are not the Waltons and often the three of us curse and shout one another out of it. It’s healthy and clears the tension. The disease has been very hard on us and has taken a lot out of us. I returned from the States 4 years ago when Dad started falling. This was a huge surprise for me as I thought everything was running smoothly. From then on I went from job to job locally and even went back to college. During this time my Mother was stuck to the house while I was not there and this eventually took its toll on her. She eventually got carers burn out as the lack of help from the HSE was astounding. I then left employment to become Dads full time carer and help my mother free up some time for herself. This was a tricky manoeuvre as I wanted to be an independent 30 year old but still had to live under my parent’s roof and rules. At that time it was a very confusing stage of Dad’s illness. His medication was constantly changing; his communication and mobility equipment needs were changing and all at a rate that we and the HSE were not able to keep up with. This often left us dizzy and annoyed that the small things he needed in life to have a shred of independence were out of reach for that one week or month too long.
This whole process has toughened us all. And there is a lesson in it for all families in our situation. We have learned to go with our gut feeling and that the professional is not always right. Example, Our Occupational Therapist insisted we stop using a sit-stand hoist over 2 years ago, this would have completely taken away my Father’s dignity or in his own words “be rolled around like a barrel” in a sling every time he needed the toilet. She is currently eating humble pie.
We have learned not to be afraid to take risks. Example, while searching in vain for a Wheelchair accessible motorhome to holiday around Ireland I asked Dad “Would you get the ferry to France to pick up the camper?” He then replied by typing out on his card “Fly.” Believe it or not people that “Fly” comment escalated into a Christmas family holiday in Lanzarote for 7 days! All the facilities are there to be used and life does go on. We would never have dreamed of doing this only for dads fighting spirit and hunger for life. P.S Don’t forget to pack EVERYTHING!
We have learned a busy mind is a happy mind. Example, from morning to night we have a schedule setup to help keep Dads mind engaged. At 7am, the TV in my parents’ bedroom is timed to switch on Ireland AM. Dad is awake and gets all the news before everybody else, his carers arrive and they discuss the goings on of the world that day. By 11am we load him into his van with optional docking system (a necessity) and bring him to our local day-care centre in Ballinasloe. The staff there are excellent and he often arrives home covered in lipstick. He’s home again at 4:30 and from here on Judge Judy takes over until it’s news time. If there is nothing on it’s time to hook up YouTUBE to the TV where the 2012 Leinster Hurling Final will be replayed or The Xmas Special of Ireland West Country Music Television, Mrs Brown also makes an appearance if we really need a boost.
We have learned that “no!” does not mean “no!” if you badger and harp on enough. Example, we are now gladly receiving 26.5 hours of HSE home help a week, when the max they allow is 17. We have learned that respite does not suit every illness, especially for sufferers that have no voice. Example, Dad has tried every respite facility in County Galway and none with satisfactory results. For our next break we plan to have a mixture of family, friends and private home help to help keep Dad at home.
We have learned that there is no place like home. A nursing home is 100% out of the question for a Motor Neurone sufferer in our opinion. Their needs both physically and mentally cannot be met by even the best nursing home in the country. Without the use of limbs and a voice being away from home becomes a form of torture. We have learned the hard way and Dad has paid the price as we found him to be only half the man he was after only 1 week of respite in nursing home/ hospital / hospice.
So what I hope you can see from this little excerpt of our lives is that if we can do it anybody can. We are LIVING with Motor Neurone Disease not trying to escape and hide from it. We were dealt a bad blow and at last I have the confidence to say we are making the most out of it.
We are now part of the IMNDA family. We know all the staff on first name basis, we trust and care for them as they do us. This battle is tough but we could not imagine going through it without the IMNDA. For anybody reading this that is feeling a bit lost or helpless, pick up the phone and call the IMNDA for help and they will either provide it for you or guide you in the right direction.
Now back to booking Xmas holiday 2014!
*Approximately 5-10% of people diagnosed with MND will have an inherited, or familial, form. This form of MND is extremely rare; the great majority of people diagnosed with MND (90-95%) have the sporadic form, occurring for no known reason