Maureen Waddell is an HD carer who receives support from SHA. 2018 was her first time at the carers conference and here she shares her impression of the trip and her top takeaways.
I decided to attend the Carer’s conference for a number of reasons but primarily so that I could meet others in a similar situation and so that my husband would perhaps gain a better understanding of the complexities of the condition. The benefits of attending the conference were so much more.
On the lead up to the carer’s conference, I started to worry about putting myself into a room full of strangers but I have to say that even from the moment I arrived at the hotel (stressed out with road accidents, not being able to find the car park), people were friendly and welcoming.
I decided to go to the mindfulness session as what was there to lose? I was sitting on my own at first as I really didn’t know anyone else there. It was not long before everyone was chatting and I felt that I could take part in the conversation. The mindfulness session was definitely the start of the theme of the conference – as a carer it is important to look after ourselves too. This is something that first time around I never did and have vowed to make sure that I take time for myself this time around. I am not always successful at this but try to ensure that it happens.
Arriving for dinner with my husband, I was unsure where to sit as I really am not the best at socialising. We decided to sit at a table on our own but were soon joined by people I had spoken to at the mindfulness session. Before long our table was full. Throughout the meal there was lots of conversation and definitely at this point I really felt so overwhelmed by that fact that we were not alone in this journey. My husband sat listening to what everyone was saying. These people we had just met could have been telling our story – they weren’t, they were telling their own. This for me was amazing as my husband could understand that it was not just us who were going through this, that issues in our daily life were also being experienced by others, it was not just me who picks and chooses the arguments I have with not only a person with Huntington’s but also a teenager! We went to bed that night a little lighter and slept the best I had done in a while.
The next day was a very busy day. On arrival at the conference and true to form I saw that a few tables had people at them but decided to sit on my own (must learn to be more inclusive). I found myself talking to people that I had never met (a big thing for me) and before long I found the table I was sitting at filling up. We had lots of chatter throughout the morning and I found myself thinking what a great opportunity this was for me. As I was listening to the chairperson of SHA I could feel myself relating to a lot of the things she spoke about – how her mum was both challenging and fun, how she knew of no limits to doing what she wanted. I found myself laughing along and thinking – yeah I have been there and I am also now there again, having a teenager who really doesn’t do the word “can’t”. She reinforced my thought that if my daughter wants to do things that at first seem impossible, I should look at all the options first before dismissing it. We then had a neuropsychologist speak to us about how we should look after ourselves as we will be useless to others if we are not looked after – definite theme running.
When I looked at the programme of events the next speaker was not something that I had ever heard of – Laughter workshop. I really didn’t have a clue and thought it was going to be something like a stand up comedy routine. How wrong I was. This woman started telling us about the theory behind laughter being the best medicine. OMG her laugh was something else. I don’t know whether I was laughing with her or at her but I definitely laughed. I was also laughing at others in the room who were in various states of laughter. One member even had to leave the room. This is definitely where I lost it. The lady then had us interacting with each other, laughing exercises. I have never experienced anything like it. I will never forget counting from 1 to 5 and back again laughing at certain numbers (I came home and showed both my daughter and my husband what we were doing – I don’t think they will ever see me as sane ever again). We had to mix cocktails of laughter and also go around high fiving everyone whilst laughing. Anyone walking in on us would have wondered what they walked in on. At the end of the session the lady explained that every morning before getting up she lies in bed with her eyes closed and laughs out loud for 10 minutes. We had to do this for 1 minute and that seemed like an eternity. I can’t imagine lying in bed laughing out loud anytime soon but her session really did make me laugh.
The afternoon session saw various exhibits showing the importance of fire safety, equipment available that may be needed in the future, information about the carer’s forum. I particularly found the section on the equipment available to help with HD patients’ speech particularly useful as with my first husband the frustration he felt at not being understood by others was a particularly hard thing to watch. Technological advances in this area for me, I feel will be so good going forward. Never complain about someone talking too much – I value all the times my daughter speaks to me (less so in the middle of the night!).
On summary, for me I am so glad I forced myself out of my comfort zone and went along to the carer’s conference. I think at the end I was so busy chatting that I was one of the last to leave I have taken away so many positives:
- Look after myself as well as my daughter
- Laughter really is the best medicine
- There is hope for the future
- You are not the only one doing this journey
Mostly the thing I have taken from the conference is the friendships I have gained.
I can’t wait for the next conference. Roll on October for the family conference.