Diary

Our Christmas Tale

Saturday, 23rd December

Oh my goodness, I was physically exhausted this morning. Nige woke me at 3.15am for a pee. It went rather smoothly actually, due, in part, to my ‘I’m bloody well getting you upright mister’ attitude. Honestly, I have no idea where that inner strength came from… I was hanging, eyes barely open and every bone in my body ached. We woke again at about 7, I think. I recall trying to convince Nige that he wasn’t ready for breakfast and trying to catch an extra half hour under the quilt.

“You’re hungry, aren’t you? I’ll get your breakfast.”

Crunchy Nut Cornflakes today – much more successful than porridge, I think. Aside from my aches and pains, this morning went well actually. It certainly ranks as one of the better ones over the past week. By half 7 I was sound asleep under the Snug Bug on the sofa, cat curled up on my feet, the sound of Nige gently breathing over the monitor.

At about 12 – half past – the two district nurses arrived. Nige was half asleep but able to say hello. I managed to find all they needed and then left them to bath him in peace. I even turned off the monitor! When I went up to see how they were getting on they were finishing, tidying things away.

“He’s had enough of us now!”

He had too, absolutely shattered he was. As I gave him a quick trio of kisses he smelt clean and fresh. Mmm, it’d been a while since he last washed and that must have horrified him. He slept easily until half 2. I helped him to the commode and whilst he did his stuff, I put the back rest up. We’d not had much success with this bloody thing so I determined to get it right! We managed, Nige and I, to get his bottom in the right place and I placed his legs up onto the bed in front of him: perfect! He dozed like that and I went downstairs and rustled him up a one egg omelette and a dose of Co-Codamol. I fed him about half,

“I don’t mind so much if you don’t eat dinner now you’ve eaten that!”

I picked Gabe up from Victoria Park at half 3, after I bought some more logs. I bought a LED Weeping Willow Tree too, for the back garden. It was originally £100, reduced to £80. I’d been umming and ahhing about buying it for a couple of days and today thought,

“Bugger it! I’ll buy it from the van fund…”

At the till the logs came to a tenner and the tree – wait for it – was £25! I left the shop sharpish, grinning from ear to ear. As Nige slept upstair, I assembled my incredible bargain and carried it up to the gravelled patio outside our bedroom window. I went up to our room and plugged it in – stunning. I tried to show Nige, I think he smiled. He did smile. Anyway, I smiled so that’s halfway there.

At dinner time we realised, the boys and I, that we actually have little food in the house. So off I go again! I told you I’m shit at food shopping. Nige would never have allowed us to run out of food just one day into the Christmas break! Exhausted, I ended the day in a hot bath with Radox Muscle Soak and a Opihr Gin with Ginger Ale. Not a bad way to end a Saturday.

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Diary

Our Christmas Tale

Friday, 22nd December

5am and Nige is moaning in pain. It doesn’t matter how many mornings start this way, I still find it distressing. I managed to get him onto the commode but his limbs are super-unresponsive at that time of the morning so I really am doing all the lifting. After 5 minutes or so he was done and I (somehow) got him back into bed. He hadn’t been to the toilet which meant I’d have to do that all again… and I did, at 6am! Time enough for me to tuck myself back under the quilt. At 7 Nige woke up again.

“It’s going to be dreadful! I need my thing.”

“What thing love? Breakfast?”

“No. My thing…”

“Do you need the loo?”

“Yes.”

So I went to his side of the bed and pulled back the quilt,

“What are doing?”

“Well, you said you wanted the loo!”

“No! Not that, my – oh I don’t know.”

I laughed it off and got back into bed.

“What are you doing now?”

“Oh my God Nige! What do you want, breakfast?”

“Yes!”

Grrrr….

Lots of visitors today, with helpful stuff, practical stuff and thoughtful stuff. I sobbed my way through the kindness, slightly overwhelmed. First up was Karen, the Occupational Therapist from Dorothy House. She brought a bed bar, slide sheets and a handling belt and showed Harry and I how to use them. As we went upstairs, Harry was guiding his dad to the toilet. Whilst he was in there, Karen fitted the bed bar. Then Sally, the District Nurse turned up. Poor Nige, quite an audience gathering. But it was great; both saw first hand the trouble we have moving him so they had a far better idea of our needs. After showing us the rest of the equipment we went downstairs. They offered me respite, not Nige going into Dorothy House but they’s send a carer to sit with him anytime, whilst I get a break. I have a District Nurse coming in to bathe Nige a couple of times a week – yes please! They were so helpful and supportive, I truly felt overwhelmed by their kindness.

Later in the day, as I was lifting my gorgeous man for the umpteenth time, Brent, from up the road called in. Gabe answered the door. I heard him thank Brent and when I came downstairs there was a bottle of Cava on the table. Such a lovely thought and, again, I felt so humble to think that Nige and I are in his thoughts.

The postman delivered a happy little surprise too! A gift addressed to ‘The Lee Family’. An old work mate of Nige’s, Phil, had sent it to us. One for Nige to open on Christmas day, I think. I gave a a little something to Michelle too – the Santa outfit we bought for Eccles. It doesn’t fit him and her daughter is getting a small sausage dog so it’ll be perfect. I dropped it round and stopped for a quick glass of festive red. More tears. Oh dear.

Both boys worked tonight. Nige wouldn’t eat a dinner so I did his tablets and helped him onto the commode. It was a struggle, my back is starting to smart a bit. As I was about to go downstairs to finish my dinner, he said,

“You don’t talk to me. It’s like you can’t be bothered…”

Wow. Such powerful words.

“It’s not that I can’t be bothered lovely, it’s that I’m tired. Let me eat me dinner and I’ll come back up.”

And I did, and it was lovely. I’d got so caught up with the illness, I started to forget the man. Of course he’s lonely. So am I! Oh the irony xxx

PS He opened his gift from Phil. We’ll definitely be watching that over the next day or so x

 

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Diary

Our Christmas Tale

Thursday, 21st December

Up at 5.20 so, as Gabe helped yesterday, I woke Harry up. Just the normal toilet run and back to bed. This time I got back in too and grabbed another hours sleep. Eccles decided he needed feeding roughly 10 minutes before Nige decided the same. So up I got at half 6 to sort out my fellas. For Eccles, a rather unappetising Gourmet Fishy Pate for the senior feline and for Nige, a glass of dissolved Co-Codamol, 3 Dexamethasone, 1 huge Kepra, an Omeprazole and a bowl of porridge. Guess which one he moaned about?

“It’s too thick!”

“Well, it was lovely when I bought it up, love. But it’s taken you a while to sit up so…”

I never have been able to take criticism.

Once Harry was up I set out to buy a baby monitor. It was quite clear yesterday that Nige gets extremely anxious when he thinks no one is about. He’s very quiet, can’t get himself out of bed safely and, above all, feels vulnerable. So I decided a baby monitor would be the ideal solution. Whilst I braved the Bath traffic (4 days before Christmas), Harry waited for the anticipated delivery of the commode, not that I knew when or if it was coming today but, well, better to be prepared I thought. I called into Tesco on my way back too – that’ll save me a trip out later. As I parked up outside the house, there was a Sirona Care van in my space. Yay, commode!

I set up the monitors and Harry bought up the commode. I explained it all to Nige,

“You don’t need to do anything lovely, I can hear you from wherever I am. So you don’t need to shout anyone.”

It was quite soon after that that he needed the loo. Gabe was with me.

“Okay Nige, we’re going to use the commode.”

Gabe helped me lift him out of bed, but he was quite distressed,

“No, please, please not there. Take me to the toilet… Please…”

Reluctantly, and a little annoyed, I acquiesced. Once he was safely on the loo though, I explained things again, clearer I hope,

“Nige, this isn’t happening again okay? It’s not safe for us to keep doing this – that’s why we have the commode. This way takes at least 2 of us, I can’t move from your side in case you fall off and the door has to be open. The commode has arms to keep you safe, it’s right by the bed and I can get you on it on my own. I can’t keep lifting you Nige, I’m going to damage my back! So, next time we’ll give it a go okay?”

Harry suggested wheeling him back to the bedroom on the commode, genius as Nige needed another wee ‘en route’ so had to use it. Success. In fact the next time he needed the loo he said,

“So I go on here do I?”

With the monitor allowing me to be where I need to be quickly and the commode allowing Nige to be where he needs quickly, our day dramatically improved. Many more toilet breaks, successful and safe. Bliss. And Nige was much more relaxed too.

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Diary

Our Christmas Tale

Wednesday, 20th December

This morning Nige woke me up at 5.3o, needing the loo. I’d heard one of the boys go downstairs earlier so knew one of them was awake. Turned out to be Gabe. Turned out he wasn’t awake. Anyway, needs must and, for the sake of safety, I cannot take Nige to the loo on my own. Whilst up, I sorted out his Co-Codamol and made him a smoothie. It was yay to the painkillers but nay to the smoothie. Gabe went back to bed, Nige dozed off and I went back downstairs. It was 6am.

I woke up 3 hours later to the sound of an Amazon delivery man banging on the door. Now awake, I pondered who to phone; Dorothy House said to call back this morning but also said it may be better to talk direct to our GP. Then, during the night, I started thinking that maybe Nige needed an injection of steroids from the ‘Just In Case’ case. That would mean a doctor’s visit. I rang Pulteney Practice. I was told the doctor would ring me back within the hour. Time for me to make Nige breakfast and feed it to him. The porridge was very successful yesterday so I did it again. Nige ate it all, though he did look vacant. As I laid him back down in bed the phone rang downstairs.

“Doctor!”

That was quick! I picked up the receiver – it was Ann from Dorothy House.

“Hello Lisa. How’s Nigel? I see you rang last night – everything okay?”

“Hi Ann. Actually, I’m waiting for a call from the GP, to see about increasing his steroids…”

I explained how Nige had been, how the right side of him had started to collapse again, rendering it impossible for me to manoeuvre him on my own.

“Okay, yes and I think you’re right. Let’s increase his steroids to 12mg – so 3 in the morning and 3 after lunch. Starting now.”

Brilliant. She also told me she’d pop into see us at 10.30. No sooner had I given Nige the extra tablet than the phone rang again – doctor?

“Hello Lisa, it’s Sally, the district nurse. I see you rang last night, how’s Nigel?”

I explained again, adding Ann’s input.

“Would you like us to provide you with a hospital bed for downstairs?”

“Umm, well he’s okay upstairs, although I was thinking a commode would be helpful as it’s tricky getting Nige to the loo now.”

“Absolutely. I’ll fast-track that for you now. Anything else?” 

So helpful. Just 10 minutes later the phone rang again,

“Hello Mrs Lee, Doctor Brook. How can I help?”

I explained (again) but he knew it all as Ann and Sally had both contacted him. He just told me he’d adjust Nigel’s prescription and asked if there was anything else. Goodness me, what a wonderful lot of help there is out there!

Ann turned up at 10.30. She had only just taken her coat off when Harry came to get me.

“Dad needs to go to the toilet.”

Ann helped me and so saw first hand how Nige has become. Once downstairs we had a frank discussion about where we are now. Basically, and I’ll cut out anything flowery so’s to get through it, Nige is in his last 12 weeks of life. She doesn’t feel he’s started the ‘dying process’ yet but we’re not to be surprised if the increased steroids make little difference. She also asked how I feel about him dying here.

“Well, that’s been the main point of keeping him out of hospitals so… yeah, that’s what we want.”

There’s the option of respite too. This means that Nige could go to Dorothy House for a few nights to give me and the boys a break. Seems to me though, that we’ve got years ahead of us for that. It’s time with him that’s limited… Thanks, but no thanks.

There you go then. That was my morning. My afternoon was spent pottering about and sobbing. I ate dinner with Nige (he managed a little) in bed. I felt vague and disconnected, empty and scared. And bloody sad.

 

 

 

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Diary

Our Christmas Tale

Tuesday, 19th December

Another great nights sleep – no toilet visits. The cat woke me at 6.30 but I wasn’t ready so put him in the shower room. Just another hour and then I was up. Nige didn’t want anything to eat but did need to pee. Getting to the bathroom was okay, though he is heavy and my right shoulder really bloody hurts at the moment. When he’d finished and we were making our way back to the bedroom, he sort of lurched over to the right, through the bedroom door which swung open, not providing him with the stability I think he thought it would. So, due to my less than 5 foot frame and his steroid pumped upper body, he tumbled to the floor, banging his arm on the bed as he went. I shouted for anyone to help but one was in the shower and the other one was asleep… In the end we managed but, as I said yesterday, the amount of effort he has to put into raising himself up from the floor renders him helpless for hours.

Breakfast is becoming a problem. I brought him up some toast because that’s what he said he wanted but he didn’t want it. So I tried to explain all the possibilities. Eventually we settled on porridge. I brought extra milk up, in case it wasn’t runny enough (it wasn’t) and fed him myself. He seems to have gone downhill since yesterday but then he did fall and bang his back and then he fell again this morning… it’s all very logical. I think.

Just before lunch the district nurse came. She was so lovely, checked Nigel’s back for us and took his blood sugar levels. She just nattered on about Christmas and our situation.

“People tend to avoid us. Not all, but you’d be surprised at the ones that do.”

“You’re right. When I lost my first husband – hmm, I haven’t really spoken about this to anyone – anyway, I was 26 and people would cross the road to avoid me…”

We both stood in the bedroom, welling up. A note to all then: rather than avoid us, be the distraction we desperately crave.

I felt better after she left. She said some very complimentary things about me which made me feel better about myself – being absent when he falls in the living and then not strong enough to get through the door intact – both things that would’ve happened anyway, eventually.

Nige didn’t want lunch. Consequently he missed his lunchtime meds. At about half 4 he’d taken himself to the loo. It took Harry and I to get him back though. Whilst he was on the toilet he said,

“I need to be in hospital.”

I felt like my heart was being screwed up into a tiny ball.

“They’ll give me injections.”

Then I think I got it. I’d said earlier that he was heavy and that I find it hard to get him to the bedroom. He told me the boys need to do more. When he heard me shout for Harry and then have to wait, he was cross. It could also have something to do with me missing his lunchtime meds too… Anyway, once I’d taken Gabe to work, I curled up beside him and explained that hospital would only do what I do. No injections. I asked if he wanted dinner,

“No..”

Okay, well I can’t force him to eat. I did ring Dorothy House about increasing his steroids but I need to call tomorrow. So it was, I sat downstairs watching TV and colouring in whilst my beloved slept so deeply upstairs, in the marital bed.IMG_1762

I’m not sure I ever thought this would be how we’d spend our 25th Wedding Anniversary.

Happy 25th, you beautiful man xxxxx

 

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Diary

Our Christmas Tale

Monday, 18th December

Wow, great night sleep. Nige didn’t wake once for the loo and so a 7am start felt doable. Nige didn’t want breakfast straightaway so I took myself down to the studio, with a pot of watered down white paint, a brush and the radio. After each wall I popped back up to check on Nige. He was mostly asleep though I did make him breakfast so he could take his tablets. Once I finished all the walls I came back up – just the ceiling to do and the boys can help with that!

Nige came downstairs before lunch. He was more comfy laying down on the sofa so that’s what we did. After lunch I was getting a little impatient with the completion of the ceiling and decided I’d just get on with it. Then Nige decided he wanted to do the accounts. In the study. On the computer.

“Oh, so – okay. I guess I can do the painting later. Or, yeah. That’s fine. Come on then.”

I helped him to the study and into the very wheelie chair, got him logged on to our Natwest account. It’s frustrating when you have so much to do but you have to spend so much time sat, watching your loved one because if you don’t, and something happens, you just would never forgive yourself. My patience is non-ending as I accepted that the completion of the studio was less important than Nige doing the accounts. Suddenly, just as I was leaving him to it,

“I need the toilet.”

So I helped him out of the wheelie chair and guided him to the loo, and not a moment too soon. He felt rubbish, he was exhausted after the hurried shuffle to the shower room and so I got him tucked up on the sofa to snooze. By then Gabe was downstairs and Harry soon after. Both boys offered to finish the ceiling though I had to take them down and show them what I wanted. With Nige fast asleep, the three of his had a moment of relative normality in the studio and, I’m almost ashamed to admit, none of us really wanted to go back up to the house.

I made the boys tea for when they finished the ceiling, though it was mainly Harry! Then Gabe and I went to Homebase to pick up some paint. He drove – not bad. He went out not long after we returned so I left Harry with Nige and prepped the walls, ready for them to use rollers later.

“Mum, can you come up, dad’s had a fall and he’s hurt his back. I think he’s winded himself.”

I raced up the steps, into the front room. Nige was crumpled on the floor, in pain. I reassured him, felt his back to see where the pain was. Harry said he’d gone to the loo but didn’t want Harry to help him. He made it back to the front room but as he tried to sit down on the sofa, he lost balance and fell hard onto his back. With help, I managed to get him back onto the sofa. He still felt ‘terrible’ as I assured him that he was safe and that his back was okay but would hurt for a while. The amount of effort it took for him to get back up off the floor wiped him out and he was sound asleep in minutes. Back to the painting. I started Harry off and came straight back up to sit with Nige.

Gabe got home just as we were making pizzas. Nige was awake, waiting for his (made by Harry). It was lovely, the four of us, eating pizza. When he’d done, Nige went on up to bed. Gabe and Harry went down and blitzed the studio. I poured myself the first of two large Black Russians.

Emotional.

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Diary

Our Christmas Tale

Sunday, 17th December

I had an extremely restless night’s sleep and not just because of Nige. I messaged the boys at 2am (just a, ‘You okay?’ type thing) but then I spent the next 2-3 hours waiting for a reply! Whilst waiting I played a few Wordscape games, Googled ‘Morbid Aspergers’ and subsequently became engrossed in all I could find out – it’s not at all as bizarre as the name suggests, in fact I drew parallels with lots of children I’ve worked with in the past. Curiosity satisfied, I dozed for a bit, until my phone buzzed at 3.24am, with a message from Gabe;

‘Yeah :)not coming home tonight but Harrys on his way :)’

I waited, listening for the front door: nothing. At 3.59am I messaged Harry;

‘Are you home?’

I just sent it, when I heard the door open… Pfft, that text cost me 5p! At 4.09am I received;

‘Yeah’

Sleep came blissfully, as it does when you know everyone is in their place. It lasted a whole 2 hours when I awoke to Nige moaning in pain.

“Shit. Fuck…”

“Are you alright Nige?”

“No. My head hurts. I feel terrible!”

I got up and sorted him out with Co-Codamol (I fed the cat while I was downstairs too). Back upstairs Nige looked shattered, his right eyeball was larger, caused by pressure behind it from the tumour. I made sure he drank down all the pain killer. Then, as it was 6.30 anyway, I made him breakfast. I got back into bed and slept peacefully until almost 11!

The rain was incessant, quite depressing actually. I curled up on the sofa and watched rubbishy Christmas films. Harry was up and about at a reasonable time and I picked up Gabe from town at about 2.30. Lois came round with her mum to see Nige. I apologised and explained how exhausted he’s been – they’re both super lovely and we nattered about all sorts. Then, joy of joys, Nige joined us. It involved a chat, a toilet break and a dicy shuffle down the stairs but he did it and both ladies (as well as Gabe and myself) were delighted.

The film today was Fantastic Beasts and Where to Find Them. It must have been good as Nige stayed awake throughout… So, there you have it, another day that starts as one thing and ends as quite another. Long may they continue!

 

 

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