In my last blog I said how I’m not going to sit back and take it, I’m going to STAND AND SCREAM. Scream about hope, scream for those who are hurting, scream that the fear of what may come will not control me. Well this is me SCREAMING for those who are hurting. Now this is going to be a very passionate blog, so brace yourself.
This applies to everyone; it applies to how you interact with people in everyday life. But I really want nurses, doctors, disability workers and anyone who works within the healthcare system, including the people that go to people’s homes to help clean or the people that assist clients to go shopping, to read this. I’ve heard people do this at work and in my own personal life but I’m going to write this from a nursing perspective.
We need to be SO careful with what we say to our patients and their families. We deal with vulnerable people. My Mum recently had an operation to have a PEG tube put in; this is a feeding tube that goes into the stomach. One of the symptoms of MJD (Machado-Joseph disease) is difficulty swallowing. There is a risk of aspiration, fluid and food going into the lungs. Aspiration can cause pneumonia and in some cases this can lead to death.
Now I get that sometimes you don’t know what to say or how to deal with something. But we need to be so careful with what we do say. Because of the risk of aspirating Mum had to drink thickened fluids while in hospital. The nurse looking after Mum made this comment about thickened fluids, “yeah it’s disgusting, I wouldn’t want to drink it either”; she didn’t then reinforce why it is important that mum has this type of fluids. We all know that thickened fluids would not be nice. But you’re dealing with someone who has just had a major change in their life. Mum is someone who loves her coffee, you can probably relate to this. Imagine that your favourite drink had to be thickened. How would you feel? Would you refuse to drink it? Imagine that your family dinners or Christmas dinner was never going to be the same again; that you would have to eat something different from everyone else or maybe not even be able to eat at all. Yes we can validate people’s feelings but you need to reinforce the importance of why some things have to happen.
Later the nurse was standing there giving Mum some panadol through the PEG tube and Mum was watching a show on the TV. The nurse made the comment that she hated the show; Dad proceeded to say that they actually had that show on DVD at home. The nurse then went on to say to Mum that she “needed to get a life”. Wow! Sorry, what!! You’re saying this to someone sitting in a wheelchair, who has needed full time care for the past 9 years, and who has been slowly losing more and more of her independence for the past 20 years. If Mum could walk and do other things she would gladly give up her DVD collection.
I sometimes don’t say the right thing and I know that as humans we all muck it up at times. There were a number of other things that greatly upset me during Mums stay. But for everyone, when you interact with people you need to be careful of what comes out of your mouth. Just in general society we can be quick to misjudge people, we limit people and we assume things; especially for people with disabilities. We don’t know everyone’s stories and we don’t know what has bought them to this point.
To add a little bit of a personal touch below is a picture of Mum, her youngest daughter (my sister) and some of her grandkids. Her life!
And if you interested, here is a extra little video that speaks about the power of words.