So going to Thailand has definitely given me the time out needed to see things from a new perspective. Strangely enough, being away has helped me to better connect to our situation, and see things with newfound clarity. I guess in my constant weary state it can be hard to give things the attention they deserve… Or let go of things/people that were dragging me down and messed with my fragile state. It’s so easy to be consumed by trivial things when it’s all muddled up in a high stress situation.
Before I left, we had been going through the process of sorting through Mike’s legal affairs and making sure things are in order. It was all really intense. I don’t love filling forms out and reading through boring paperwork as it is… And when it’s about making end of life decisions for your dying husband and having to even think about when he is no longer capable of doing… well… anything… It’s all a bit overwhelming. I was already full of self doubt after my confidence took a blow around that time, so the thought of having to take on all this responsibility and power kinda pushed me over the edge.
Since I’ve been back though, we’ve managed to get the legal stuff out of the way, which has been a massive relief. And we are further on our way to filling out his advanced health directive, which is all about what he wishes/refuses to have done at the very end. We’ve been prolonging that one for months now.
Today he talked to his specialist about one of the procedures they do to be kept on life support. I’ll tell you one thing… This whole experience with Mike’s illness has conditioned me to expect the very least out of people. I’m sure they’re all great at what they do, blah blah, but 9 out of 10 have absolutely no social skills or bedside manner. I used to really take in what these so called professionals had to say, because more often than not, I feel like I’m fumbling around in the dark as this horrible disease continues to take over, clearly having never dealt with anything like this before. You listen to them as voice of reason, to educate you, to guide you with their experience… Doctors, nurses, social workers, etc. Each one we meet is like a massive slap in the face. Anyway, getting back to my point… The doctor was clearly against this procedure and went on to tell us about how hardly anyone does it, and basically asked why the hell would Mike want to have it done anyway. He said that it was rare in Australia. There was one special case where a guy was put on it, but that was because his wife was a qualified nurse and knew how to care for him, and how he wanted to be kept around to watch his kids grow up. As if Mike had no reason to wanna stick around. Like his life had no value because he didn’t have kids. And then went on about Stephen Hawking, how he was a rare case because he’d gotten his tracheostomy when he was young and had lived with the disease for a really long time. He made a point to clarify that Stephen Hawking had a reason to keep living, and that he wouldn’t get bored sitting around because he had a brilliant brain. So did you hear that everybody? If you don’t have kids or aren’t a hell brainiac, you may as well chuck in the towel now.
The sad thing is, that it only bothered me because he made Mike feel like his life had no value, like he had nothing to offer. Normally I would have been shocked and horrified at how people could say such things… and now I feel a bit blasé about it all. Because I’ve experienced this kinda thing too often over the years, and don’t take it so personally anymore. Just days ago, a social worker made a crack about Mike “signing his life away” while we were going through the legal paperwork. Problem is, that’s exactly what we were doing. Yes, I’m sure if your husband was dying, you would find it hilarious to joke about that too. It bothers/bewilders me that someone in that position has no concept of how difficult a situation like this could be. Not only that, she tried to bully us into changing our mind to things she thought we should do. It’s crazy how many of these people can’t keep their own opinions to themselves. Especially when everything is already so confusing. Give advice, yeah. Guide, sure. But manipulate and goad? It’s pretty disgusting.
All in all, we’ve had to deal with so many people that are meant to “help” us through this difficult time but the sad reality is that the majority of them make it worse. They definitely do their part in making you feel insignificant. Luckily I’ve learnt not to buy into it. It’s easy to get caught up in it, but throughout everything, I’ve definitely changed the way I view things. It’s getting easier to focus on what’s important when you look at it from a life or death perspective. It’s made me have more faith in my decisions, because now I know that most people are going to try to tear it down.