I have learnt that over the years it is extremely important to stay positive and keep your head above water. When caring for someone with Huntington’s disease you can feel like you are losing your identity and your personal life, your life becomes blended with theirs as they require so much assistance, time and attention.
Over the past ten years I have had major up’s and down’s I won’t lie and pretend that everything has been amazing and I have handled it all great! I have not! I have cried and gotten angry and fell out with my mum and my brother several times. I wanted to do my own thing but I had to sacrifice things to bring dad places or do things with him. Times I would be running into town to do quick messages and I can’t get out of the house without him, which then slows me down and takes up my day, my free time.
Sometimes I do think I was slightly selfish in the way I handled situations, all I could think about was what I was missing out on and what I was giving up, I didn’t think of what my dad must be feeling that he couldn’t go to town and get his own shopping himself. I was young and annoyed with the entire situation. Sometimes it was easy and I loved taking dad away for the day epically in the early years. It was great spending time with him and I feel like if dad wasn’t sick and didn’t need me to take him we probably wouldn’t have done so much together we would have been living our separate life’s like normal people.
My point of this blog is, you need to look for the positive, what help will it be to you to think of the negative all the time; you will regret it in the future when time has ran out.
My positives I have taken form Huntington’s disease are:
I got to spend quality time with dad and make memories form days away on the boat to cups of coffee.
I got to meet amazing people through Huntington’s, some young adults in the same situation of mine and people such as Charles Sabine, Dr Ed Wild and many others.
I get to publicly speak about Huntington’s and inform people about it, it’s not all horrible filled with difficult times, there are good times to come if you let them.
I get to be involved in history, the first HDANI (huntington’s disease association Northern Ireland) camp, the Euro HD camp in 2016 and sitting on the Board for HDANI, I think I may be the youngest board member.
Fundraising in different ways, thought parties and functions with friends and families.
Mostly the positive I take from Huntington’s Disease is making a change and bringing change to the world. #imnotdrunk is about changing people’s opinion on Huntingotn’s disease and letting people know that it is out there! Huntington’s disease is a real thing and is happening now.
I didn’t have a lot of support and help through the caring for my father and dealing with the risk of getting Huntington’s disease, and certainly not when I started the testing process at 18 years old, and it almost ruined me. I would have to arhue and fight with social workers and medical professionals to get them to listen to me as they seen me as a young child, sure what did I know? I had family and friends and I love them for how much they have helped me through, my goal is never to see a child or young adult suffer like I did and people in my generation did.
When my parents were thinking of having my brother and I there was no information about Huntington’s disease now, we know enough to survive this! Stay positive and keep yourself alive, what I mean when I say that is, be yourself when you can, make time for you to have free time if you are a career. It took a long time but my brother and I have a pretty good schedule and plan set in motion now. Don’t let it take you life as well as the person you are caring for. I learnt this the hard way and understand now my dad does not need me 24/7 he is looked after through care assistants and when they are there I don’t need to be he is safe, clean, feed and healthy.
I would have gotten so frustrated and hated when people would have said to me, “what’s meant for you won’t go by you” (such an Irish saying) or think of others and then name someone who is suffering from cancer or another disease. I understand and feel for that person I’m sure we could relate if we got together”.r and chatted. The most annoying much have been “well that’s life” or “there’s people a lot worse off”. I would have gotten so angry and felt like “this person has no idea what I’m going through” and the truth is most people don’t. They never will if you don’t speak out. Everyone has a mouth and a voice, use it and get the word out there, Huntington’s sucks! We all know that! Let’s start telling others that, but remember we are not angry, we can’t change what is happening we need to learn to deal with it and move forward, I’m not saying forget or it’s easy, hey it took me 10 years! Find something you enjoy, a sport or a hobby or even just taking a walk. Keep yourself above the water.
I’ve been caring for my father for the past ten years with Ryan but I have done so much more and so has my brother.
My experiences so far:
When I was 17 I travelled to America on my own to stay with my auntie Vicky, I spent one week with her in Connecticut and one week with my Cousin Kerri in Nashville. I had the most amazing holiday and enjoyed myself while Ryan looked after dad for the two weeks.
I came home and passed my driving test as well as began my A levels in Enniskillen College, as I am from Armagh this required me moving in with my grandparent, I had someone say to me once “did you move to Enniskillen to get away from the responsibilities of your father” (yes, it was a medical professional). No I did not I made things more difficult for myself because every time he wanted or needed something I had to drive an hour to help him or see him.
As I continued my A levels in medical science, I also went to America for 9 weeks to teach water skiing and wake boarding at Raquette lake girl’s camp, I also obtained my New York state boating licence. 9 weeks away from dad leaving Ryan to look after him.
After America I decided it was time to move back to Armagh dad was getting worse but I still had a year to do in college so I drove an hour to college and an hour home so I was close by if he needed me, I complained so much about how much I missed America, I went back the next summer this time for almost 4 months, again Ryan cared for dad on his own.
After America I moved around from Enniskillen to Armagh, I took a year out and worked in an accountants and enjoyed summers with my friends and going out on Lough erne with my brother.
In 2014 I entered the lady of the Erne and won I read an amazing poem about Huntington’s Disease which I will put up for you all to read. An inspirational young girl Rebecca Ambrose wrote it and captured the disease perfectly. This was an amazing experience and i got to tell so many people my story and inform them about Huntington’s disease. Wining the lady of the erne opened a door for me and got me connected with an old friend of my dads who pulled some strings and got us the use of a barge for the Lough Erne boat rally which is held at the end of May each year, this year was the 50th anniversary. Dad was unable to go the previous year because of his condition deteriorating and it was heart breaking for Ryan myself and especially dad. We were now able to take him on the 50th anniversary rally with help from my aunt Debbie to care for him. On the rally i met my amazing boyfriend and am very lucky, this weekend was very hard as dad was not easy to care for on a barge on a lake. We had to be extremely careful as his walking was restricted and there were other complications. Stephen did not shy away and helped at any opportunity and i love him for this.
It’s now 2016 I’m half way through my degree after leaving high school an angry teenager due to the impact Huntington’s was having on my life, I have amazing friends and family and a beautiful home in Belturbet Co Cavan with Stephen. I am very grateful for every experience I have had good or bad and feel like now is the time for me to help other. This year for Huntington’s awareness week you will find me speaking at a medical training day on Thursday 29th September at Belfast city hospital informing medical professionals what it is like to be a family member caring for someone with Huntington’s and at risk myself. On Friday 30th September I will be at the annual Huntington’s conference which I attend each year and is where I met the likes of Charles Sabine and Dr Ed Wild. This year I will be there speaking of my experiences the Euro HD camp 2016.
This is only a small insight to my life and what I have achieved while caring for someone with Huntington’s disease. You can still have your life as well.