It’s coming up two years since Stefanos diagnosis. That Awful day when I sat opposite a neurologist I’d never met before in Auckland Hospital, 38 weeks pregnant with our first and only child, and listened to him rip our lives to shreds in one sentence. I’ll never forget the expressions on their faces, how they seemed to care so little. Like it was a routine day for them, serving a death sentence in that room with bright fluorescent lights. It was annoying to them that I was so upset. We were just discharged after that, sent out into the daylight- to do what? They couldn’t do anything more for us. We’ll be ‘looked after in the community’.
So from April 13 onwards we are on borrowed time. I guess we are supposed to feel grateful for every day after that. Forgive me if I don’t.
I don’t write blog posts anymore because things haven’t changed much. Or they’ve got worse. Or the stories are just depressing. Which isn’t very fun to write about or read. If you want something positive, or a laugh, stop reading here. If you’re still reading- I’m not writing this for sympathy, I find it cathartic, I feel like I’m doing a favour to Stefanos friends to keep them in the loop- and I also want you to realise how lucky you are to have a life without mnd. It might make you appreciate more what you do have and not sweat the small stuff.
Mostly we have been struggling with medical systems and services. And adapting to Stefanos constantly changing needs. I’ll give you a couple of examples of our medical adventures.
We visited our good friends at their rural property in Brighton (south of Dunedin) in October last year and Stefano had an awful crash in his wheelchair, ending up with him smashing head first onto a concrete path and the chair (160kg) landing on top of him. Now- I’ve been told we should never lift him when he falls because of the injuries we can cause to him and ourselves- so we called the ambulance and waited, while the thick pool of blood coming from Stefanos head grew on the ground. As day turned to night and it started to become freezing, we realised we had been waiting over an hour so called the ambulance again. They told us they hadn’t sent anyone, and weren’t planning on sending anyone. Mostly because stefano wasn’t dying enough for them to prioritise the call. So we were left with no option but to try and lift the chair off him and get him up into it and drive him to the hospital ourselves. Thankfully our friends looked after a really upset Matteo while all this was happening, covered stefano in blankets and didn’t mind that they were blood-soaked, and also followed us into the hospital to take care of us until we were admitted into A and E. Stefano had a long recovery- and as usual, didn’t return to his full former capacity after the accident.
More recently, Stefanos feeding tube needed to be changed, so we went in for what was to be a routine procedure. It was completely stuffed up- they did a lot of damage to his stomach pulling it out and then didn’t put the new one back in properly. So we spent 13 hours in A and E again waiting to be admitted so that he could be drip fed while the infection was monitored, and his peg replaced properly. During this time stefano was pumped with morphine and left to his devices/ mostly with no fluids and not enough oxygen for his system to cope under all the pain killers. I had to remind nurses that he was unable to breathe properly with his head lowered onto the bed- as his mnd has left his lungs compromised- and I had to actually yell at someone to get him some oxygen to raise his blood oxygen levels since they had slipped dangerously low- no one had noticed. He’s lucky he doesn’t have brain damage. After another long painstaking recovery, stefano returned home with much less physical strength than previously. I asked the Hospice to take stefano in for a week of respite, because his care needs were higher than I could cope with after his discharge- but no cigar. He doesn’t have cancer so he’s not a priority.
Yes there’s a complaint being made. But that’s not the point. It’s not a one-off accident that wasn’t handled well. This is what it’s like every month for us now- or every fortnight- I don’t count anymore, it’s just our life. We know hospital orderlies by name and we chat to St. John’s ambulance officers on the street because frankly we see them more often than anyone else. We’re part of that strange little community of mostly very elderly, vulnerable, invisible people who spend their lives getting in and out of ambulances, never actually getting better.
Stefano is now 100% dependant on help for everything. He’s even losing strength in his hands to the point that he thinks that he won’t be using his chair for many months more. He can’t take a sip of water or have a bite to eat without it being given to him. He can’t scratch his itches. He can’t stop Matteo from climbing on his lap and playing with his wheelchair controls. He can’t turn the pages of a book (please don’t send him books unless they are ebooks) or move his bed sheets if he gets too hot or cold.
I’d like to be like those other wives of men with mnd who say ‘but there’s so much love between us that I will do what his hands can’t do, I’ll willingly do everything for him and feel hopeful that he will be the one miracle patient who overcomes this illness’. But I’m not. That’s not how it feels. I’m still too angry that this is happening to us. That we’re not that lucky couple taking photos of ourselves on our wedding anniversary with Stefano holding Matteo and the beach behind us, saying ‘gosh I feel blessed’. Like when I read articles written by women who are pissed off with their husbands because they don’t do exactly 50% of the housework since their babies were born, I actually want to wring their necks. And that we’re not able to celebrate any of Stefanos successes anymore. They’re all memories in the past and too painful for either of us to bring up.
Matteo knows what’s happening and often asks me if dad is alright. I don’t know what to say to him. ‘Yup he’s fine.’ (But chances are, you might never remember him).