Thought it was probably time I let you know what’s going on.
I’m sorry the updates have not been more frequent, but so much is happening I just don’t have the time to gather my thoughts. To be honest, I haven’t wanted to. This whole situation is, well, shit. Utterly shit. And I have been feeling angry and bitter about it. I haven’t hidden the fact from those who know me. I have become far too honest and outspoken. I am not pleased for anyone enjoying life at the moment. If you are happy, I hate you. If you are skinny, I hate you. If you are on holiday, I hate you. If your husband/boyfriend/partner isn’t dying, I hate you. Just saying. Just so you know. Nothing personal, you understand. I’ll get over it.
In my last blog I told you that Paul’s consultant said he may only have a few short months left. A few months have now passed, and so at this stage anything could happen. When she visited last week, she said he’s only still here because he’s got the constitution of a fit young man. His strong vital organs are keeping him going. Just. She suggested that 1-2 months was now a reasonable prognosis. She would be surprised if he makes it to 3. She also advised we be honest with Jack and Max about the situation. We spoke to them a few nights ago. They were surprisingly OK (they’re not daft – they can see how poorly their daddy is). I couldn’t hold back the tears though when Maxi was trying to process the information. “So, in 2 months I won’t see Daddy ever again?”.
Fuckity fuck fuck fuck. How on earth will they deal with losing their Dad at the ages of 12 and 9? I can’t even begin to comprehend it. They’ve got their whole lives ahead of them. Poor souls.
Anyway, the fact is Paul is weakening every day. He cannot walk around steadily and so any further than the bathroom or bedroom and he needs his electric wheelchair. His left arm is now as useless as his right. He relies on the Eye gaze equipment to communicate and to operate the TV. His head has now dropped forwards, so he mooches round staring at the floor. His feet are swelling with fluid as his lymphatic system shuts down. His hands are blue from the lack of circulation. He now weighs 7st 10lb. He’s so skinny that his coccyx is visible through his skin from the pressure of sitting down. The skin has worn away exposing the bone beneath. He’s in constant pain as his skeleton takes the strain of his withered muscles.
He can no longer take any medication orally (a very scary breathing incident put a stop to that). Everything goes in the peg, although her still likes a coffee or cold drink to refresh his mouth, which gets filled with thick saliva. I try not to listen to him gulping and spluttering. It’s no good me trying to stop him. I called him stubborn the other day and he was so cross he tried to kick the chair in a temper, losing his balance and crashing backwards into the wall in the process. I had no sympathy. He IS stubborn. He always has been. Nothing has changed in that respect. Like all husbands, he’s an arsehole when he wants to be.
Still, he has to deal with me and my temper along with everything else. I have now stopped clinics and teaching and am based at home caring for Paul full-time 24-7. I’m still doing some admin when I can, to keep me sane! But if he’s only got a few months left I want to be with him as much as possible. Paul can’t be left for any length of time. He needs help with most things – even something as simple as wiping his nose or mouth. The carers have now stopped their morning visit as he prefers me to wash and dress him. He often loses control of his bowels and a young 20-year-old girl coming in to wash his shitty arse wasn’t proving very nice for him. I want him to have as much dignity as possible at this point. So, I pick the dingleberries from his arse hair, clean the wax from his ears, wipe the snot from his nose and the dribble from his mouth. I apply all his lotions and potions in the exact order he likes it doing (I swear they could dig him up in 50 years and he’d be immaculately preserved). I brush his teeth, style his hair and spray his favourite aftershave. It’s the least I can do.
Dignity aside, I must admit to making him wear stupid novelty socks (for my own amusement). He’s got some Jesus creepers, some flip flops, some brogues, some football boots and some tiger paws! I have also bought him a packet of gorgeous frilly incontinence pants for his pooey days. He looks so pretty. He just stands there like a bag of bones in his frilly pants and special socks, while I chuckle to myself at how amusing I am. He’s so patient, even when I’m grumpily putting his feed or meds in his PEG too quickly, having woken from a 60-minute nap on the sofa and risen like the very devil. He ignores the ‘what now’s’ and the frustrated growls when he needs help with the toilet at 3am or wants to turn over in his bed at dawn. He knows what I’m like, and he takes no notice, thank goodness. I’m working on my bedside manner. Honest.
I imagine we will bumble along like this for the next couple of months, until the inevitable happens. The Macmillan nurses are now helping with pain management (end of life care). They have suggested we plan the funeral (which is done) and make sure all affairs are in order. They deal with death every day. They are the only ones who can help at this stage, I guess.
I’m not sure I’ll manage another blog before, well, you know what. If you want to know anything, please just message me and I’ll be happy to give you an update. You won’t get tears, so don’t be scared to ask. I think I’m all cried out. For now.