“Would you like a prognosis?” the consultant asked, as we refused permission for her to sign the ‘do not resuscitate’ document for the 3rd time. She went on to explain how in her opinion, resuscitating Paul in the event of a cardiac arrest would result in a very poor quality of life, if indeed it was even successful. His body is now so weak that it will probably not withstand any form of treatment.
“OK” I said, as Paul looked at me, and I looked at him. We had never been offered this information before.
“Paul’s breathing test results show that his lungs have weakened considerably” she explained. This, along with his quick deterioration over the past few months, was obviously cause for concern.
You see, within these past few months Paul has completely lost the ability to speak. He can only make noises like Chewbacca (which is his name when he tries to tell me something) and now relies on his phone and eye gaze equipment to communicate. His left arm has stopped working. He can now only use his fingers of that hand. His right arm is useless. He suffers with pain in this hand as the circulation has stopped, making it blue and swollen. He now weighs only 8st (this is a sore subject as I’m now much heavier than him. I’m not happy about this. Not happy at all). His bones protrude from his body and his coccyx is poking through his skin from sitting all day. His legs are extremely weak, and he cannot get up unaided. But once he’s up he still tries to shuffle about, at which point I call him Ozzy (Osbourne). I swear, he moves just like him!
His lungs are not strong enough to cough up the secretions he produces, which sit in his windpipe making him feel like he’s suffocating. He’s on Morphine for the continuous pain he suffers throughout his entire body, especially his shoulders which come out of their sockets several times a day. As his legs get weaker, his feet are losing circulation making them constantly cold and swollen. When this happens his name is FatFoot. FatFoot doesn’t appreciate it. I amuse myself at least.
He’s getting used to his Eye Gaze. He calls me a c*nt quite often and likes telling people to f*ck off. He’s programmed all sorts of expletives into the software. He always did have a potty mouth. I’m amazed our kids haven’t followed suit.
Carers now come in every weekday morning to shower, dress, feed and medicate him. This helps me no-end, as doing this as well as sorting kids, dog, 2 cats and myself and working full-time, was proving too much for me. The last straw was when I tried to get dressed in a pillowcase one morning. I knew I’d finally lost it. I needed help, and the doctor signed me off work for 2 weeks so I could just rest, after 2 years of ‘getting on with it’. Being the strong one was not an option any more. But he doesn’t like being washed by strangers. He’s just glad that being so skinny makes his tackle look bigger (his words, not mine). FFS.
So, taking all this into consideration, the consultant strongly advised we agree to the signing of the DNR form, which we did.
She then gave us the prognosis.
“In my professional opinion, we’re now looking at months” she said solemnly.
I couldn’t say anything. I was trying not to lose it so she didn’t feel bad (she’s about 12 and I couldn’t stand to make her feel awkward). Funny what you focus on when faced with life-changing news. Paul didn’t look remotely surprised. He just nodded his head.
The practical questions then followed, regarding hospices, end of life care, etc etc. Paul is adamant he is not going into a hospice, which I fully support. I don’t want him to be frightened or alone in a strange place. I want him to be in his own bed, with me, holding my hand as he slips away. Plus, if he dies at home it means he can haunt me forever.
So that’s where we are. Months. I don’t know how many. She said “a few short months” at one point during our conversation, which to me seems unreal. He certainly doesn’t seem ready to depart this earth. He needs to at least see Leeds get promoted. Hmmmm, he might be here a while then…
I’ll try and keep you posted…