A Carers Perspective
My name is Noel Noonan and this is my story of MND from a Carers Perspective.
I would like to dedicate this article to my wife Denise, to Ciara and Brian our two children who ended up being the best carers ever. They looked after their mom 24/7, it was never an effort. They are now 17 and 14 years old and making great strides in their lives. To our families, old friends and neighbours who stepped up without ever being asked I will never forget what you all did. To all the professional carers who became family friends and still are two years later, you are all super people. To Mary the nurse from around the corner thanks for being a great help when we had no one else and Aileen whose father passed away very soon after Denise , you gave up so much of your time.
Denise passed away on August 15th 2011. She was diagnosed in November 2007. Denise had the disease for 4 years. The first two years were ok, we as a family lived life to the max, the 3rd year was tough and the 4th year was difficult beyond belief. Denise throughout the four years and up until about two weeks before she passed away ran our home as she had always done, she was the boss. She had an unbelievable coping mechanism that gave her the ability to live with MND. Denise made caring for her possible in an impossible situation. She possessed a love of life coupled with a great spirit that helped her to get on with things no matter how impossible they seemed at the time.
Lesson one: laughter. Throughout the final two years, no matter how difficult our situation was at home, we insisted on having an open house. All our visitors regardless of their reason to call knew that we never wanted them to feel sorry for us. We always had lots of company, between all the professionals and friends and family the house was always busy and full of laughter. Denise’s female work colleagues were filthy; their jokes could not be repeated. Denise just laughed at all of them. Denise knew every bit of scandal breaking in Limerick City before the stories broke.
Being a full time carer for someone you love who is seriously ill is possibly the hardest thing anyone could take on in their life. To watch a partner or family member that you are caring for with MND and who is losing all their movement slowly but surely is very difficult. In hindsight for me the toughest part of all was the realisation that every night when everyone had gone home and Denise was asleep. I was on my own, it was then my brain started to go into overdrive with mostly negative thoughts. As a carer, to deal with this situation is very difficult. The trick here is to accept your situation. However this is not easy. I think the carer has to live with this.
We had a great marriage. However our relationship changed on the day Denise was diagnosed. From that second everything changed for our family. In hindsight everything I did from that day was for Denise. While she struggled in the early days to come to terms with MND, I had to step in and try to sort out the daily routine with the family. This marked the beginning of my time as a carer. Life moved along for two years. All was grand but then Denise became too sick to work, her speech was almost gone she was loosing power in her hands and legs. What I learned at that stage however was that every obstacle can be overcome no matter how enormous, providing both people agree that they are in this together and we did that. It was never discussed that was just how it was. Going to the loo, periods etc [I thought at that point I was going to give up and run away]. I learnt though from the Home Help staff that these little challenges were nothing. I was making mountains out of molehills. Denise and Alice [H.H.] used to have a great laugh at me. These issues proved to be trivial because we worked as a team to get through them.
Another important lesson that I have learnt as an MND carer is as follows. Accept your mistakes and move on. My behaviour at times was not always what it should have been. The pressure was always on big time. The illness, the kids and my job all added to very high stress levels; right up to the end the stress levels were impossible. The most important thing I can say to other carers who may be in this very difficult position right now or who may be coming into the most difficult stage is that MND will never let up, it will never give you a break it keeps on getting tougher and tougher even impossible. However you are entitled to make mistakes, to get mad or even break a mug now and again. The situation entitles a person to, on occasion, let off steam. They were times that I wanted it all to end. I prayed for Denise to pass away, I hoped that this might end the constant pressure. Occasionally I used to get into a temper over little things, for example on one occasion I could not get Denise’s pillow just right and Denise could not tell me the right position. We were both upset. I got mad. As usual though Denise in the end won out. By looking in a different direction she let me know exactly what she thought of my behaviour. In the end her eye movement was all that she had left but by using only her eyes she would every time win all the debates and argument. However we made a pact. Denise would let me fly of the handle now again and when it was over she would give me a look that would say are you sorted now? I would say yes fine. She was amazing. This was a great trick between us; the air was cleared in an instant.
Eventually I realised that I did my best and that sometimes my best did not measure up. I had regrets but that’s life and you can only do your best and I have now accepted this fact. Denise though as usual was ahead of the game and accepted all through her illness that I did what I could, she was never hard on me.
One of the things we did as a couple and myself as a carer was to accept help very quickly from where ever it was offered. Everybody, family, friends, neighbours, Home Help, The Irish Wheelchair ASSC, IMNDA and Milford Hospice. Of course they all fell in love with Denise. I think they all thought I was mad, they were right. When Denise went in for Respite Care to Milford our local hospice, they could not keep me away. I used to visit about 4 times daily I never understood that the break was for me. The respite was Denise’s way of helping me out. She never liked going in to Respite Care but she did it for me. I should have realised this and taken more time off. By the time Denise came out of Respite Care I was still exhausted. There is a Lesson here for all carers. Once Denise went in to Respite Care for a long weekend to let Brian and myself go to an u12 rugby tournament. One of the proudest moments of my life was when he came back with the cup to show his mother. All carers should use the Respite Care when it comes up.
Another lesson for MND carers is try and use the hoist at all times. I never did. I am a fairly big fellow and Denise was a petit woman [she will like me for saying that] and was losing weight. I could get Denise up using one arm and have her on or off the loo as quick as anyone. Against all advice I lifted Denise several times daily, this was never a problem while I was caring but several months after Denise passed away I decided to start walking again. I quickly discovered an issue with my lower back that required immediate surgery. The problem is now sorted but it was brought on by not using the hoist.
Caring in our house was a two way thing. The kids and I looked after Denise but she looked after us every minute of every day. Realising what was ahead, Denise stronger than ever moved herself into the centre of our family. She knew she had to if we as a family were to cope with what was to come. Without her strength laughter and courage we would never have survived. Denise always had the final say in every decision made. This rule lasted right up to the very end. I often ended up with the short straw, on more than one occasion when I told Brian to put away the bloody X Box, I was told sorry dad, mom said I can play with it. That was that.
I am writing this explaining my situation back then. I know that all is changing now with Government cutbacks. I hope as carers a stand can be taken against these cutbacks. I also know that if you are caring for someone with MND you cannot do anything else never mind take a stand against Government cutbacks.
Despite what I have written, if I had to do it all again for Denise I would. Mistakes and all. I would never again complain. I still miss her. I miss the craic. She was my carer and I will never forget how she helped me to get through the toughest years in our marriage.