Diary

Our Christmas Tale

Christmas Day

Just like any other day, remember that… Nige awoke at 3 again, with a headache and the need to wee. Both these things are in my remit to sort out – easy stuff. Unless, of course, he decides, whilst I’m preparing his Co-Codamol, to try and get into bed.

“Oh Nigel, what have I told you? Please wait for me to help you, it just makes it so much harder…”

It does. He’s half on, half off the bed but the angle is such that I can’t easily move him to where he needs to be. Add to that the exhaustion he’s feeling, having exerted himself, solo, leaving him with no energy to help me in any way! I’m nothing, if not tenacious though, so by 10 past 3 it’s mission accomplished.

Just after 7 and it’s time for breakfast, meds and another dose of Co-Codamol. He’s really not eating much – I’ll mention it to Sally later. I was downstairs by half past, listening to him snoozing over the monitor and watching Maigret with a very potent espresso.

***

I had to wake the boys up at about half 10. Gabe made it downstairs first, found his meagre stocking and put the kettle on for tea. I went back upstairs to give Harry another gentle nudge: tea did it! And a bacon sandwich. This day has been long anticipated, I think, and we have all inwardly felt it needed to be gentle and non-Christmassy. I mean we have never done the whole paper hats, karaoke and party blowers, we’re more your unfussy Christmas dinner, old vinyl on the record player and board games type of family but even that, even that felt just too celebratory whilst Nige lay upstairs, oblivious to the day.

Mum and dad got here at about 3, perfect as dinner was ready to be served up. It all seemed to go well. If I’m honest, I struggled with the normality they brought to the house – the very reason I invited them! But, yeah, it left me feeling conflicted. Thankfully the boys were fabulous, chatting openly, listening, entertaining; masking my own awkwardness… A few times a took myself up to sit with Nige and not just because I thought he needed the company.

After mum and dad left, it was just us three again with our wonderful man, in our bizarre life that has become scarily normal. It’s like those hideous slippers that are likely to kill you as you negotiate the stairs but are just too bloody comfortable to get rid of. And no one else understands why you’re alright with them…

Next is New Year. I really fucking hate New Year.

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Diary

Our Christmas Tale

Sunday, 24th December

3.20 loo stop this morning. I was, surprisingly, quite with it though my legs didn’t know and so I stumbled about for a bit before I made it to Nigel’s side. I emptied the commode and saw Gabe’s door still open (my way of knowing when he’s home) which alarmed me slightly as he said he wasn’t going to be late… I was about to text him when I heard him walk across the landing and close his door. There. He must’ve been downstairs. I climbed back into bed, content with all. After that, I’m not sure how long we slept, I was definitely up before 8 though. Breakfast was a repeat of yesterday with an added,

“You’re forcing me to eat!”

Damn right: no food, no steroids; no steroids, no voice: no voice, no anything. We can all ‘be’ Nige’s legs but, with the best will in the world, we cannot be his voice.

I briefly napped before waking up Gabe. He wanted to go over to Lois’ and drop off her presents but had to wrap them first. Oh man, honestly, how can he be so bad at wrapping presents?! I was having palpitations at his sheer lack of ability! Well, I had to help… just to avoid a heart attack. He drove over to Winsley, stayed for just 5 or 10 minutes and then we headed back. Nige was okay – Harry just had to do him some Co-Codamol – but other than that, fine. At about half 12 the two lovely nurses turned up again. They were a lot quicker bathing Nige this time and he was a little less anxious. I busied myself with the washing as, at this rate, Nige won’t have any clean underwear by New Year!

Nick and Shelley got here at about 1. It’s always so lovely to see them both. I see Nick quite a bit but Shell’s usually working or shattered so we don’t get to catch up often. She’s one of life’s carers, you know? It’s in her bones to care deeply about people, in the same way it isn’t in mine. She’s a genuinely, thoughtful bean, that one. Coffee in hand, there was no hesitation in her going upstairs to see Nige, and, though she must have been a little taken aback (most who know him are) she really didn’t let it show; carrying on chatting away to him, making him smile. Making me smile. What a perfect way to wile away a couple of hours; with these two lovelies.

The rest of my Christmas Eve was full of tidying and sorting. It’s not quite there but it’ll do. It’s all a bit half-arsed really, I mean I’m not sure I see the point if I can’t properly share the day with the person who, for the past 28 Christmases, has shared the planning, the excitement and the joy of Christmas with me. It’s not normal, is it, for the boys and I to be sitting eating our Christmas dinner whilst Nige sleeps upstairs on his own? These are just a fraction of the ramblings of sadness that are doing a grand job of invading my ‘joy to the World’ cortex but the words aren’t forming any coherent sentences so I’ll spare you!

Merry Christmas then. Remember, it’s got nothing to do with presents but everything to do with the present 

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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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