How’re you coping with all this shit?

Coronavirus? Front line? Isolation? Illness? Grief? I mean, the problems we are all facing right now are so numerous that there is no other suitable phrase is there? I mean, ‘all this shit’ pretty much covers all bases and everyone knows exactly what is meant by it. ‘All this shit is doing my head in’. ‘I’ve had enough of all this shit now’. ‘What’s happening with all this shit’? ‘This shit is fucking mental’. You get the gist. So, how are you coping? With the shit? I’m up and down and round the bend if I’m honest. Hard isn’t it?

Before anyone starts, I know we’re not about to go over the top into No Man’s Land. I know we’re not enduring the Blitz. I know we’re not going to be separated from our families for 6 years. I know all this. I get it. But this is a different kind of war. One that we were not mentally prepared for. I’ve recently had to break from Facebook and stop watching terrestrial TV because of all the judgy attitudes. It was really affecting my state of mind. You see, not everyone is finding it easy to ‘just stay at home’. I mean, I’m not going to bang on about Paul dying, but I wish I could explain to some of these people that being confined to the house where my husband died, looking at his chair, his photograph and that fucking box of ashes, is hard! I would have been back at work by now, occupying my mind, moving forward. I would have sold this house full of awful memories and started afresh. Instead I have to sit in the place where he died trying not to think about that day. It’s really fucking hard.

When I did my Vlog, I was feeling fine. Honestly. I was not worried or stressed at all. The alone time was welcome. I was exhausted from grief. I felt a sense of relief knowing I could truly rest without worrying about daily life. If I couldn’t be bothered to clean it didn’t matter because nobody was allowed to come round. I could get drunk on a school night if I fancied. I could lay in the sunshine. I could eat 3 Magnums before breakfast because the world had been turned on its arse and all the rules were suddenly out the window. Fuck it!

I used to rant on to Paul about the messed-up way we were all trapped on a never-ending, money-making, hamster wheel of despair. Working all day to earn money to buy a fancy car so we can drive it to work every day. Working to earn money to buy a fancy house that we’re never in because we’re at work. I mean, it’s crazy when you think about it. I would get frustrated that there was no way out. Longing to be free from the daily/weekly/monthly routine. Don’t get me wrong, I love my job (I know not many people can say that). I’m talking about the bigger picture. The fact that as a society this is how things are. This is how it is. This is how it will always be. Bloody hell, I’m getting way too deep here. Let’s move on. I swear I’ve got a point to make somewhere…

OK, so all the shit happened and in the beginning I felt fine. The human tragedy didn’t affect me (I realise how harsh that sounds, but I had no room for anyone else’s grief). We were all being forced to stop and take a breath for a minute and it felt like a good thing. But the weeks went on. They have now turned into months and this whole thing (all this shit) is getting pretty damn hard.

I hate routine. I don’t have Sunday dinner. I don’t wash on Monday, iron on Tuesday, do the big shop on Friday. I get irritated by the very notion that people choose to limit themselves in this way. But the longer (all this shit) goes on, the more I understand why. You see, people need a purpose. Dramatic as it sounds, we all need a reason to begin each day. I’ve realised that my downward spiral has been my own doing. I was getting up late. Feeling like shit because I hadn’t slept soundly. Not doing anything productive because I felt like shit. Eating junk because I couldn’t be bothered to cook and needed quick calories for energy. Going to bed and sleeping badly again because I had done no activity and was full of sugar and carbs. The less I was doing the less I wanted to do. I felt disgusted with myself for my weight gain. Lost confidence in my appearance. Believed I was useless for not being productive. Stopped answering my phone and pulled away from everyone. Not good. Not good at all. I was in dangerous territory.

So, I decided to set my alarm. That’s all. No big plan. No revelation. Just set my alarm. For a week now, I’ve been getting up around 8am, getting showered, styling my hair, and putting my makeup on. I’ve exfoliated, moisturised, shaved (let me tell you, that was a challenge after 12 months of neglect!) and put on my best perfume. Then put on my walking boots and gone down the fields with the dog! Every day. I’ve worn my sparkly gold Russell and Bromley wedges (which have been stuck in a box for nearly 2 years) to get the groceries. I’ve painted my nails and tanned my (ridiculously white) legs. And I’ve turned a corner.

Now, I’m gonna try really hard not to sound like Oprah here. I hate over analysing shit. But in making those small changes I am beginning to feel like I owe it to myself to get my life back. I’ve cooked meals every day this week. I realise it’s only Wednesday, but that’s pretty good for me! I have only had 2 Kit Kats as opposed to 2 packets. I’ve even been drinking water. WATER! Who even am I? Losing the weight and taking pride in myself again has become a ‘want to’ rather than a ‘should do’.

And why?

It’s the routine. Getting up on a morning with a sense of purpose. Wanting to be productive. Being needed. Being useful. We need the hamster wheel, I guess. I hope we can all get back on it soon. When all this shit is over.

V x

I lost my husband on Saturday 14^th December 2019.

He called me with his alarm at around 7.45am to get up. I wandered into his room and listened to his familiar groans of agony as the pain began to take hold. I reached for his head and shoulders and sat him up. It took no effort at all. I could have lifted him with one finger. Odd, I thought, but continued through the usual routine.

As I reached for his drink, he lolled over to one side. I eased him back to centre and reached again for his drink, but he then fell to the other side. “Bloody hell babe” I said exasperated as I picked him up again, “you’re all over the place this morning!”.

I positioned his drink in his hands just so, but they fell away from the cup. I tried again, but they fell away again. “I’ll hold it for you” I said, and I sat down on the floor at his feet.

As I looked up, my stomach lurched as I realised that it wasn’t the drink he was struggling with, but the fact he was gasping for breath. He couldn’t take in any air. Oh my God he couldn’t breathe.

I lifted him to the wheelchair and gave him a shot of morphine as I remembered the nurse once telling me that would open his airways in an emergency. I wheeled him through to the lounge and transferred him to his armchair as quickly as I could manage. As he sat down, I noticed he was looking at his inhaler with desperation in his eyes. I pressed the cartridge at his lips, but his gasps were too shallow to take it in. I ran for his breathing machines, but the jumble of wires sent me into panic.

“Shall I call the nurse for your emergency meds?” I asked, to which he nodded his head. That was when I know the situation was really bad, as he would normally insist on me not calling anyone.

I phoned the nurse on call. She took all the details, but I knew it was too late. As I put the phone down Paul’s eyes rolled upwards and he fell gently to the side. Exhausted.

All I could do was hold his head to my chest as he made his final attempts to catch a breath. By this time, it was about 8.10am, only 25 minutes since he woke. Five seconds of stillness and he tried again. Ten seconds of stillness and he tried once more. He didn’t try a third time. He was gone. Free at last from his agony but leaving his family heartbroken. I can’t bring myself to describe to you how the boys reacted, but I will tell you it’s a sound I never want to hear again for as long as I live.

Paul’s funeral will be held at Pontefract Crematorium next Friday 27^th December at 9am. It will last about 40 minutes and then we will have a drink in his memory at Hemsworth Miners Welfare FC, Fitzwilliam, where he was Captain for many years. We will celebrate his life and remember the man he used to be before this cruel disease took hold of him.

He currently rests at Normington & Sons, Havercroft should anyone wish to say their goodbyes. He looks at peace, dressed in his Leeds United shirt with a funny sideways smile on his face.

Thank you everyone for you love and support throughout nearly 3 years of hell. You gave him the strength to continue on, for which we will be forever grateful.

I have never known and will never know anyone as strong as my husband. How he endured what he did for so long is testament to the man he was. An absolute legend. One of a kind.

See ya babe. Hope you’re having a party up there. Love you always.

Vikki x

Paul Russell Banton

28.08.76 – 14.12.19

RIP

I’m gonna write a blog.

However, there’s a small chance I may be a bit pissed, so bear with me. I managed to nip out for an hour to say thank you to some lovely friends who were raising money for the MNDA, but being a lightweight, peri-menopausal, stressed, over-tired and the fact it’s 12 million degrees outside, has resulted in 1 prosecco and 1 beer going straight to my head. Pathetic.

I was literally an hour. Paul doesn’t like being left for any length of time, as he is now so dependent on me. No one else will do. No one else can bloody deal with him! He has always been a bit OCD but was able to keep it to himself and not let it affect anyone else. Well, that is still a part of him, but now he relies on me, and that means learning the routines, schedules, positions, and sequences he needs to adhere to, to make him feel happy. I had to cancel the carers because they were only doing the basics (which is all they are paid to do), but I knew Paul did not feel comfortable, so it’s now me. Sometimes I’m sober, sometimes I’m drunk. Sometimes I’m nice to him and sometimes I’m not. But hey, he’s doing alright so far.

In fact, we’re now nearly a month past his predicted expiration date!!! He’s never bloody conformed. Ever. If you say black, he’ll argue white, and I’m sure that’s why he’s still with us. His mental strength is unreal. I would have caved by now, and passed away in a self-pitying, sorry state. But he’s not having any of it. He’s fighting.

I can’t explain the pain he’s in. Day and night. It’s constant. There’s no position he’s comfortable in. His (massive) head flops about all over the place and puts immense strain on his neck. He has open wounds on his tailbone from the pressure of just sitting. Night-times are agony for him, and he is now up every 2 hours to move his joints. He has 2 sleeping pills and 20mls of morphine for bed and yet he still won’t chuffing sleep! How is that possible? He’s a machine! I have ranted at him (in one of my over-tired selfish moments) that it’s like having a 7 stone fucking new-born. Piss and shit and dribble and whining, and so fragile he might break at any time. The only noise he can make is a distressed moan, which keeps me in a constant state of panic that something awful is happening, when in fact all he wants is his arse scratching.  

But it’s the least I can do. After enduring one of my exhausted outbursts of tears and despair, he told me (through his machine) that he would understand if he had to go into a care home. My goodness. Never. I may be on the edge of a nervous breakdown, but I would never do that. What I am going through is nothing like what he is going through, which soon snaps me out of my own selfishness.

So, as I was saying, he agreed to me going out for an hour (even though I knew he was afraid). I made sure he’d had a piss and settled him in his chair with strict instructions not to move and get himself stuck God knows where (yes, he still tries this. Stresses me the fuck out.) In my drunken state I have attempted to tell you where we’re at. It’s like waking up in a nightmare every single day and it’s fucking hard. I am watching my husband being tortured to death and there’s not a damn thing I can do about it.

There you go. I’m bored now, and I’m sweating my tits off in this ridiculous heat. I’m off to sit in the freezer. With a glass of something.

I’ll keep you posted…

Hello

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.

V x

 

 

 

“Would you like a prognosis?” the consultant asked, as we refused permission for her to sign the ‘do not resuscitate’ document for the 3^rd 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…

V x

 

 

 

 

 

Happy New Year!

How is going so far?

We entered 2019 with mixed emotions. When the clock struck 12 and the fireworks began, I put my cheek against Paul’s and we just stayed like that for a minute. Neither of us needed to say anything. We were thinking the same thing. This year was going to be a hard one, and maybe, just maybe, our last one together. We allowed ourselves to take some deep breaths together and then stopped. Maudlin gets you nowhere. We cuddled the kids and enjoyed the fireworks on the telly. 2019 had begun with a bang.

We have been able to start this year constructively, as the money we have received from the Everest sponsorship (more on that in a bit), has enabled us to start adapting the house even further as Paul becomes less mobile. A hospital bed will be delivered very soon, meaning Paul may be able to get a decent night’s sleep with less pain. That means we are shifting the kids onto the top floor into what will essentially become a lad pad. I’m not sure if that’s a good idea or not, but I’m sure they’ll love it. We’ve got wardrobes to fit and furniture to buy, which I’m really looking forward to.

The next thing we need to sort is a mobility car. We need to get one sooner rather than later (along with a specialist wheelchair) as Paul is not steady on his feet for any length of time and is therefore mainly housebound. We attempted a trip to Bridlington during the Christmas break and it was just awful. We just weren’t equipped and neither of us had realized how difficult the logistics of the day would be.

We are not yet used to the time it takes to get Paul showered and dressed on a morning, let alone get him out of the house and into the car. What should have been a 10am departure turned into an 11am one, as I fannied around trying to sort the boys, the dog, myself and of course his Majesty. The boys were arguing over who was sitting where and the dog was pulling me down the road instead of getting in the car (he hates it). I managed to get him in and then went to tackle the mobility scooter. It needed dismantling before we could put it in the boot and I could not understand a bloody word Paul was saying as he tried to instruct me. I got madder and madder and 20 minutes of struggling later it was in 3 pieces. However, the 3 pieces are chuffing heavy, and I am weak! Me and Jack managed to lift it into the car between us, but all I could think was that we would have to do this 3 more times before the day was out. I got Paul in the car and belted up and we set off. 90 minutes later than planned.

We got there and the whole bloody rigmarole started again, hauling the bits out of the boot and trying to fit them together, like some kind of impossible Krypton Factor challenge. Once it was up, Paul set off. 5 seconds later it conked out. Great. 20 minutes of more fannying and we got it going. I’d had enough already. It was now 1pm and we had got nowhere! But, we persevered, ambling down the promenade, enjoying the views. Paul’s hands were not strong enough to grip the handles on the scooter and so every so often we would have to stop and lift them back on. Don’t even talk to me about corners. Let’s just say, he can’t do them. Right laugh.

We reached Jerome’s for lunch (we know how to live), and Paul parked up the scooter and walked into the bar. I went ahead with Cozmo to find a table and when I turned around no-one was behind me. I walked back to the stairs and Paul was sat down on the second one, having lost his balance and fallen. He was OK, but I couldn’t pick him up! Nobody offered any help as I think they just assumed he was arse-holed (which is normally the case), so they all looked down at their plates pretending they couldn’t see the farce that was playing out in front of them, with me trying to get Paul on his feet without pulling his shoulders out of their sockets, whilst shouting at Cozmo to stop stealing the chicken nuggets from the baby’s plate on the next table.

We sat down, and I ordered alcohol. Much needed alcohol.  Me and the kids had a bite to eat and then we headed back; after Paul spent 10 minutes maneuvering his way out of the courtyard like Austin Powers, with a 45-point turn.

Me, Jack and Cozmo walked back up the beach and Paul and Maxi went on the scooter up the walkway. “Give me the car keys” Paul said, “I’ll be there before you”….

30 minutes brisk walk and we got back to the car. No Paul. No Max. I looked up and saw Maxi running across the car park. “Mummy I’ve got bad news, Daddy has fallen off the scooter”. The blasted thing had run out of battery on a hill and he had fallen face-first into the sand trying to get off it. FFS. He was OK luckily. I began pushing the thing across the car park to get it back to the car, virtually horizontal as all my weight was behind it. Needless to say, it got kicked several times before it was once more dismantled and hauled into the boot. I had officially lost my shit. My shit was nowhere to be seen.

By this time, we were all very wet and cold. Paul’s body completely seizes in the cold so getting him in the car was a nightmare. We belted up and set off home. I was furious by this point and swore I was not going to attempt another day out with him until we had a wheelchair and a car that can accommodate said chair. I just can’t carry on like that! He didn’t answer. He didn’t have the strength. He went to sleep, and we had another silent journey home. Awesome.

So, after the hospital bed, next on the list is a wheelchair, a car and the voice technology so we can have a conversation again. He’s glued to the sofa until then!

Sooooo, we can sort all this because 3 very special people have been raising money for us over the past year. Nigel Beardow, James Page and Lee Mulroe made it their mission last year to raise 10,000 for us, a target they smashed as the final total was over 16,000! They risked life and limb trekking to Everest Basecamp. No mean feat to say the least. They spent their own money and used their annual leave to do this. They put their bodies under immense strain, suffering altitude sickness and tummy upsets, freezing temperatures and hunger. For their friend. For our family. We will be forever grateful and thank you doesn’t seem like enough, but it’s all we can say. Thank you. From the bottom of our hearts. And thank you to all you wonderful people who donated to the fund. It really does take away the financial strain that we would otherwise be under. It means we don’t have to worry about unexpected costs as they arise. Amazing.

We continue moving forward, with amazing support from family and friends. I couldn’t run this house, look after 2 kids, a dog, 2 cats and work full time without the fantastic network of Angels that have formed around me. You know who you are, and I love you all. And you will always be my family. Just so you know.

When Paul got his diagnosis, he predicted he’d have one good year, one bad year and one really bad year. We’re into the really bad year. Your love and best wishes will get us through. As you may have noticed, it’s getting difficult to see the funny side now, and the smart-arse quips from me are few and far between. It’s been hard putting pen to paper this time for that reason because I don’t want to depress you all! But it is what it is. And you guys are on this journey with us, so you should know the truth. It’s getting tougher by the day, but it’s amazing how strong you can be when you have no other option.

Thanks for reading. I’ll try not to leave it as long next time…

Love ya. V xx

 

I’ve just had an impromptu few drinks with some lovely friends, who asked me when my next Blog would be out. I admitted to them that since my last one, I’ve written two more in my notepad but haven’t published them. Why? I don’t want to be the person who is constantly whining about life and how difficult it is. I’ve been a bit sick of the sound of my own self-pity and didn’t want to inflict that on the rest of you. But they all told me that people were waiting for another and so I have promised I would put pen to paper once more.

Paul didn’t come for drinks. He is still getting used to the PEG, and the nutrition-rich formulas that I feed him are playing havoc with his stomach. Having shat himself earlier today, he didn’t trust his own arse to go down the pub. I offered him a sanitary towel, but he declined. I took Cozmo with me instead. I’m glad I went. It’s so easy to cut yourself off from people and I really enjoyed just chatting about shit for an hour. It’s so refreshing to listen to other people’s tales and just switch off from your own life for a while. And, of course, Prosecco is always welcome.

This past few weeks have been intense. I’ve aged 10 years. I look like shit. My Botox has worn off and my eye bags are spectacular! My brain is mush and I can hardly string a sentence together. But it’s Paul that has had to endure some serious shit. Deciding to have the feeding tube fitted was a big step for him, as it’s another win for the disease. He is no longer in control of that aspect of his life, and he has finally had to accept that fact. Driving to the hospital was hard. On a routine visit to the Palliative care team the week before, we had been asked to start thinking about ‘plans for the future’. The leaflet we were handed included questions such as:

·         Would you like to be resuscitated in the event of a medical emergency?

·         Would you like to donate your organs to research?

·         Have you made a will?

·         What kind of Funeral would you like to have

I was going over and over these questions in my mind and realized I didn’t know what Paul’s wishes were should the worst happen. And if I didn’t establish this information I would most definitely make the wrong decisions and he would, without doubt, haunt me forever. I was also very aware that he was nervous having never been admitted to hospital before, and so if I brought these things up I was probably going to make matters worse. But I had to know. So, I asked. He was absolutely fine about it all. I cried. What kind of shitty conversation were we being forced to have? Man, this is fucking harsh.

The operation was not straight forward. The wait was awful and being told that they had to abandon the procedure due to him being unable to breathe, was really worrying. They rescheduled for it to be done under GA, but Paul was told that there was a huge risk of him being on permanent ventilation afterwards if they couldn’t get his lungs working for themselves. I’m glad I didn’t know that until he was out of theatre and awake.

I’ve never seen him look as poorly as he did laying in the High Dependency Unit. He was weak, tired and in pain, and looked gaunt and yellow. He was attached to all kinds of machines that beeped constantly. He was exhausted and could hardly speak. I couldn’t stay for long. I was glad when it was time for the school run, so I could get out of there. I cried as I drove home, not caring who could see me. My big, strong, mouthy, pain in the arse husband was laying in a hospital bed, a shadow of his former self, and not a damn thing could be done to help him. I made myself busy at home, knowing that others would be visiting him (one of them being Nigel, who the nurses thought was his gay lover). Naturally.

But, he was soon home. The PEG is surprisingly easy to use. It looks neat and you wouldn’t know it was there. I mean, I can’t say he’s chuffed to have it, but I think he knows it’s necessary as he continues to lose weight. At his heaviest, there was 6 stone between us. There’s now 2. I’m getting fatter as he’s wasting away! Not on if you ask me. Bastard.

After 6 days without alcohol, he steadily weaned himself back on the beers. Beer is his friend. He is determined to continue his habit for as long as possible. I suppose cirrhosis of the Liver is the least of his worries. He eats when he wants to, but at least he’s got the option if he’s too tired or his hands won’t work. He has now started to use the lift, finally admitting that a fall on the stairs is now highly likely. But I cannot get him on the mobility scooter. It still sits in the corner of his ‘special’ room. The ‘special’ room is where all his stuff lives. We don’t really call it that when there’s no-one around. I might as well be honest. It’s the Spaz room. For his Spaz stuff. Cos he’s Spaztastic. Spaz.

So, life goes on. I’ve got my game face on most days. I have the occasional meltdown, but I don’t let it show because it’s hard for everyone else too. And I must keep things going. It’s amazing what you can deal with when you have no choice. And Paul doesn’t feel sorry for himself either. His consultant said he wishes he could prescribe Paul’s attitude to his other patients, because it’s so refreshing. He just has to be good at everything doesn’t he? Even dying. ‘Yeah, I’m dying, no worries, it’s shit but that’s how it is so let’s get on with it’. FFS.

That’s it. I’m off now to sort his feed. They come in different flavours. Why? It’s ‘Forest Fruits’ tonight. It smells like the worming medicine I had to drink as a kid. Gross.

V X

PS. His Funeral request? No God and no Man U shirts. He doesn’t care about the rest.

 

I was sat next to Paul the other evening while he ate his dinner. His nose was blocked from hayfever, so he was struggling to breathe with a mouthful, but watching him struggle to dip a piece of celery into his sour cream and onion and then lift it to his mouth was exhausting to watch. Not to mention the chewing. Paul’s jaw is now offset because his facial muscles are not strong enough to hold it in place. His tongue (a muscle) doesn’t move away from his teeth automatically, so he bites it quite often. This weakness also means he can’t move food to the back of his mouth in order to swallow it, so he normally wrestles with one mouthful for a good five minutes.  These factors, coupled with his pollen-filled nose, meant the noise he was producing on this particular evening was akin to that of a farm animal that’d been starved for a week!

Now, you need to understand I’ve always had an issue with noisy eating. It grates on my every nerve. It infuriates me in fact. It’s not good for my rage! It’s actually a thing you know; it’s called Misophonia. Anyway, this particular aspect of the MND has tested my patience. It’s also been a challenge for Paul too. He has many, many, many oddities, one of them being a phobia of saliva, spit, and mucusy substances in general. Particularly the drooly, goopy-type stuff that hangs from the jowls of large dopey dogs, or the white, foamy bubbles that can gather at the corners of someone’s mouth when they speak. It makes him gag. Literally wretch.

I looked at him with a mixture of pity and irritation. Mostly irritation. The noise was unreal. He noticed me watching him, and knowing he was winding me up amused him greatly. He laughed suddenly, (he can’t stop this from happening anymore; another symptom), and out sprayed his food in all directions. Dribble was hanging from his chin as I scrambled about for tissues, chuckling at the ridiculousness of the situation.

“Someone is having a fucking laugh with me”, he slurred (his speech is pretty bad now). “He likes talking – oh, let’s just screw that for him. He likes eating – oh, let’s just make that a massive ball-ache for him. He hates saliva – oh let’s just prevent him from swallowing so he spits it out all over the place. Fucking hilarious! I must have been a mean fucker in a past life!”

He likes the word ‘fuck’ as you may have gathered. It was one of the first words he recorded for the voice bank.

“It just looks like such hard work”, I said, now genuinely concerned for him.

“It is”. He answered. Then continued on his quest, determined to finish what he’d started.

But although we laugh, the seriousness of the situation is real. The problem with the excess saliva combined with chewing and swallowing issues, is that choking is a major danger. You know when you eat a cracker, or some bread, or something dry like that and you accidently breathe in a crumb? Well that’s what it’s like for Paul all the time. As his throat muscles and lungs get weaker, it’s becoming increasingly possible that the next morsel he inhales he won’t be able to cough back up again. This in turn could cause an infection such as pneumonia, which we’re under no illusion will probably be the thing that kills him in the end.

So, he has been a very brave boy and had a consultation with the Gastro surgeon to discuss the fitting of a feeding tube, or ‘Peg’ as it’s known. The tube will be connected directly to his stomach, so that food and essential nutrients can be put straight into his body without the risk of choking. It won’t be a pleasant procedure. It will all be done under local anaesthetic and he’ll be in hospital for a week. He’s been putting it off for ages because he loves his food. He’s a greedy git in all fairness, but now it’s a chore for him and he’s started to skip meals which he can’t afford to do as he needs extra calories for energy as his muscles disintegrate. Paul’s solution up to now has been to supplement his diet with as much beer as possible. I’m quite sure he will attempt to connect said feeding tube to a keg of booze at the first opportunity; however I’ll just be glad to get essential nutrients into his body quickly and easily.

He will probably be admitted for the procedure sometime in September, when the holidays are over and there’s not much going on. Until then he will continue to slop and splutter his way through meal times. He will continue to burn himself on the oven and scald himself with the hot water. He will continue to leave a trail of destruction through the house (I can cunningly deduce where he’s been from the dot-to-dot of coffee drips on the carpet and the sticky splatters on the kitchen floor). I kind of lost my patience when an entire King Pot Noodle was dropped on the sofa, so he is now banished to the kitchen for the consumption of all foodstuffs. At least when I’m at home. I know full well that when I’m not around he loads the lift up with snacks, bumbles upstairs, calls the lift to the first floor and pulls his treats out into the comfort of the living room. Clever sod.

I will keep you all posted on the op’. He’s not looking forward to it, but the prospect of an intravenous intake of alcohol appeals to him. Plus, it might numb the pain of his frozen shoulder now that his bones have apparently fused together. FFS. There’s always something. I’m sure he just likes the attention.

Vikki x

Just had a thought… I wonder if I could get one of those tube thingys for Prosecco purposes? I should ask…

 

 

 

 

 

 

A wheelchair ramp has now been fully installed at the back of the house. It’s huge! Paul and me were stood in the garden the other evening contemplating how we could improve the remaining space and make it into a nice place to sit during the Summer (assuming we get one).

“We’ll have to bring the paving out further” I said. “The ramp now covers the existing slabs and we need a place to put furniture. “

A discussion ensued about the logistics of it all. Jack had been hovering in the background for some time and I could see he’d got his own thoughts on the matter in hand.

“Don’t worry Mummy. We can just put everything back to normal when we don’t need the ramp anymore” he said, quite matter-of-factly.

The implications of what he had just said flashed through my mind as I glanced over at Paul. He had an amused expression on his face which began to turn into a large grin.

“Ohhhhh that’s right Jack!” he exclaimed. “When Daddy’s dead you can have it however you like!”

He laughed at his own dark humour. Jack laughed too as he wondered back into the house; “Well it’s true” he muttered to himself, knowing he had a perfectly valid and reasonable point.

You see, we’ve been honest with the boys right from the start.  They know the future outcome of  Daddy’s illness and they are processing it every day in their own separate ways. If they ask questions we give them truthful answers. Nothing is sugar-coated. We don’t hide anything. When we are sad, we cry. When we get angry, we shout. When we are happy, we laugh. And because the boys see us this way they are open with their own feelings and emotions and will express themselves without worrying about what our reaction might be.

During the past year I’ve learnt that kids are tough. They adapt to circumstances far better than adults. We grown-ups over-think everything.  We over-analyse and worry about things that haven’t happened yet and may never happen. Kids don’t. They take each day as it comes and live in the present. The beauty of this is that it makes any given situation much less scary or stressful because they are simply dealing with their current reality and not 100 different imaginary scenarios.

I have tried to take a leaf out of their book. When people say to me “I don’t know how you cope”, I simply say it’s because I have no choice. We have to play with the cards we have been dealt and get through one day at a time. One thing I’ve most definitely become aware of is that everyone is fighting, or has fought, some kind of battle. It’s just most of us are too wrapped up in our own woes to realise. But by taking it day by day and not thinking about 6 months or a year down the line, we stay happy. And we are happy in the midst of it all. This road we are walking has forced us to appreciate each other and everyone around us more than ever before. And not sweating the small stuff we have the freedom to be happy, together.

Which leads me on to tell you how important our friends and family are in the midst of all this. Especially considering how difficult it is for them too. In fact, if you’re reading this, you’re probably one of those people I’m talking about, so I’m going to address you directly, because I haven’t up to now.

Thank you for everything. You are amazing. Whether you have organised events, donated your hard-earned cash, participated in sponsored activities, given raffle prizes, or spent your time and energy helping us no matter how big or small the gesture, we want you to know it is appreciated so much. Your love and support helps us get through every day. You are the best, and I hope that knowing how much you are helping us makes you feel good about yourself, because you should. Thank you so, so much.

To keep you in the loop, the next steps for us now that the ramp is in place and the fancy loo seat is up and running (if you ever use it expect a full tutorial from Max including strict instructions not to press the ‘turbo’ button*), is the installation of the through-floor lift and wet room. The council have (unexpectedly) approved the funding for a disabled elevator from ground floor to first floor, and the builders have started work already.  We have quotes in for the bathroom to be made into a wet room, and the Robert Sinclair-Davidson Foundation has kindly offered to cover the costs of that, which is amazing. This means that Paul will maintain his independence as much as possible and be able to move freely around the house. Something you take for granted until you can’t do it anymore.

So, that’s our news so far. Paul is cracking on with life and fighting every step of the way. He’s breaking all the plates. He’s spilling all the drinks. He’s banging into all the doors and walls. He’s insisting on feeding himself even though it takes him an hour. But at least he’s doing it.

Love, Vikki

 

*PS: The ‘turbo’ button is an enema. Don’t press it. “It shoots right up your bum hole”, Max says. Just so you know.

 

 

It’s been a while since my last post. Apologies, but I slipped down a very dark hole, which I’m slowly emerging from. Kind of. Maybe. I think.

You see, it’s hit me. The passing of Professor Stephen Hawking a few months ago made me realise there’s no happy outcome to this grim tale. This is happening. This is real. Shit.

When it was announced on the news of his passing, I felt sick. I cried as the reporters detailed the horrors of Motor Neurone Disease and how it forces someone to die a slow and painful death. It was just too much to bear. Too close to home. On seeing me upset on that miserable March morning, P asked me what I was crying about. “It’s Stephen Hawking”, I said. “He’s dead”.

“Oh”, came the reply. I looked at him. He didn’t seem at all affected by this revelation. “How old was he?”

“76”, I said.

“How did he die?”

“In his sleep”, I answered.

“Hmmm… 76 and died in his sleep.  That’s a bloody good innings if you ask me! I’ll take that!”

Therein lies the difference between me and P. All I saw was the tragedy of the situation, and yet from his point of view this was good news! Stephen Hawking didn’t die gasping for breath, riddled with Pneumonia and in agony. He died peacefully, surrounded by his family. He lived 50 years with this bastard of an illness and fought it every step of the way. From P’s point of view this provided some comfort and dare I say hope. And more importantly it has spurred him on to now accept help.

It’s now time to start adapting the house to accommodate P’s deteriorating condition. He is weakening at a pace and now struggles with the most basic of tasks. Over the past few months we’ve had visits from Physiotherapists, Nurses, Occupational Health and Psychiatrists, not to mention lift-fitters, ramp-fitters and even someone who will install  a fancy loo seat that heats up and washes your bits! And it’s remote-controlled! I’m telling you now – I’m shoving P on a potty ‘cos that bad boy is mine!

P is dealing with new challenges every day. Extreme fatigue is a major issue. The simplest of tasks can wipe him out for hours. He needs a straw so he can drink without spilling. He has to put special drops in his mouth to stop him dribbling, as he can’t swallow often enough to get rid of it (which most of us do without thinking). He can only eat small, soft pieces of food and has an appointment next month to arrange the fitting of a ‘peg’, which is a feeding tube straight to his stomach. Something he has been trying to put off as long as possible. He has to sit with a neck cushion on to support his head, or else he ends up in a lot of pain from the effort it takes just to sit upright. He is so bony from muscle wastage, that it hurts him to lie down in bed. He is in pain most of the time and has constant muscle twitches, and yet he rarely complains. He’s clumsy. He spills things. He falls over. There was a time when I would piss myself at him going arse over tit, but P losing his balance can now have serious consequences, as he cannot use either of his arms to break his fall. Something he finally accepted after throwing himself over the handlebars of his bike (don’t even ask me why he was on the bloody bike), resulting in a broken cheekbone and dislocated jaw. As if I’m not going insane already, I just reckon he’s making sure that I’m going to end up rocking and dribbling in a corner somewhere!

But, he’s a determined swine. When he’s tired he will ask me for help getting dressed, or to cut up his food (not pizza), or lift something, but most of the time he wants to do it himself. Even if it takes three times as long. This is a man who needs two hands to lift a toothbrush, yet he will still vacuum the carpets, or iron a few clothes, or go to the Aldi for the groceries, because life goes on and that’s the way he likes it. Although, he’s not best pleased I’m now stronger than him and can totally beat him up whenever I like! Come on matey, try to tackle me with your ‘special’ arms! No chance. (He’ll be calling me a bitch right now).

But this is what see’s us through. Finding the humour in the dark times. Well, that and a mild anti-depressant. I mean, sometimes that hole is just too deep.

I’m going to leave you with one last thought, from the great man himself, Professor Stephen Hawking: 

Ain’t that the truth.

Vikki x

PS: Anyone want to buy a bike?