We were childhood sweethearts. There is nobody in the world like Kathleen to me. We are very much a team and since her diagnosis, we have taken things on together as what impacts one of us, impacts both of us. I never want Kathleen to feel different to me or anyone else. For me, I want to make her life feel as normal as possible despite the fact she is living with MS and has some challenges as a result of that.
Since Kathleen’s diagnosis, we have seen our fair share of ups and downs. Kathleen’s mobility was impacted by MS and she lives with continence issues. In the early days of bring Kathleen’s carer, I had to learn on the job. When you find yourself in the role of carer to a loved one, there is no training, no manual. It can feel very isolating and it’s all trial and error to start off with. You have to find what works for your partnership and it can be difficult to find your groove at first.
When Kathleen began to experience continence issues and she needed my support with that, I did it – without question. We have had to learn to navigate life with catheters which sounded scary but in actual fact, they have been a game changer. They have made things more manageable and allowed us to be back in control. The continence issues Kathleen experiences are not an issue for us. We have learned to navigate them. We have found discreet solutions and anyone that were to meet Kathleen would never know that continence was an issue for her at all. In fact, it’s not an issue anymore because we have it sorted.
I wish there had been more guidance for me, especially in the early stages. The public health nurse is great but they are often overstretched. I wish I had the wisdom that other carers had gained, passed on to me. In the beginning I had no idea how to go about things and I could have done with some guidance from someone else who had gone through this before me. That’s what I really feel I needed. Support and guidance. Someone to tell me the simple mistakes I am likely to make and the tips they’ve learned to make things easier or better.
We have received some great support from some services and organisations. However, we have experienced many positives and negatives in this area too. When we are availing of support, we need it to be consistent and reliable. We have had issues with external carers not turning up, arriving late and being in a rush to leave. We have also found to a degree, the fact that our house is a family home can be forgotten by some. On the flipside, we have had some excellent people come in to provide support. Again, it’s just that that needs to be consistent.
The idea of life as a carer can be scary and there is no denying there are difficult days.
It is the hardest but most rewarding job you will ever do. It can be tough and some things are trial and error but it can be done. There can be many hurdles but once you’ve overcome them, you find your rhythm.
For more information about care giving visit www.ms-society.ie/care-givers