Diary

Keep On Moving

“Before Prince left Wendy and Lisa with a heartbreaking hole in their nomadic dreams, Lisa pondered how her future in the road would be; ‘I’ll be the enigmatic lady, aloof with a book and a puppy. Everyone will wonder what my tale is… I’ll be cool like Mona Lisa…’ Since reality hit, she has mostly been thinking, ‘Shit, I’m a forty-something widow in a van, with a dog… It’s all going to be sad and lonely…’
Well we’ll see. Next Saturday will be the first night away – alone – for Wendy and Lisa AND Django. What could possibly go wrong?”

With the Ostara Equinox upon us, though clearly the Goddess has fallen out with the weather, what better time for me to dip my toe in the murky puddle of my new camper van life. After all, Spring is all about rebirth and new beginnings, right?


Where to go though?
The last trip, but one, that Nige and I took together was to Blackland Lakes, in Stockley. We chose it because of it’s proximity to my brother’s house in Quemerford and the delightful walk we’d have to take to get there for drinks and a meal. One of Nige’s favourite places was Nick and Shelley’s little cottage where he always enjoyed a relaxed atmosphere, wonderful company and incredible food. Since his death I have visited them often, it still being a safe place where I have no fear of letting go of my emotions. I have very few places where I can do that safely. So, for my first solo escapade with Django, my trusted hound, Blackland Lakes was the obvious choice.

One adult, one pet.
29511556_2130849550485890_8344716865988534623_n
Booking was simple – out of season, one adult, one pet. You just click and choose, with a gin and tonic in your other hand. The next day I received the confirmation via email.
It was peculiar to see the number 1 next to ‘adults’ but only briefly. I mean, life changes right? Not so long ago it would’ve been 2 children as well as 2 adults. And I can’t tell you how long I’ve wanted to be able to put the number 1 next to ‘pets’! So it was all booked; one adult, one pet.

Wendy and Lisa and Django.
Django is an Airedale pup of just 18 weeks old. He is full of energy, testosterone and teeth. He doesn’t run, he bunny hops and on the end of those powerful, hopping legs, he has massive sponge-like paws. Imagine my utter delight as the rain settled in for the weekend… Saturday morning, after cleaning the cat (beautiful, old and poorly Eccles) I set about gathering up bits and bobs for the van. It’s been a while since I’ve accessorised Wendy and I thought, with Django roaming around at the end of his 50ft lead, I’d have the perfect opportunity to add a few quirky ornaments to the decor.
I got there in the rain. The camp was virtually empty; save for a few motorhomes and the obligatory fishermen with their weekend passes. To my surprise I was booked onto a hard-standing with electric hook-up! I’d thought, probably naively, I’d be in paddock 9 again, opposite the gate that leads to Nick’s house. But this was great – electric hook-up! Another first.
Whilst Django sniffed about, I organised the awning. Oh dear. Puppies and balls of string, as we know, go together like bread and jam. Guy ropes are fluorescent balls of string… Django is a puppy. It was never going to end well was it? I managed though, to erect an awning of sorts. I moved it to the back of the van, rendering it pretty much redundant and made a mental note to invest in something a little easier for the single lady (with a puppy) to put up. I also managed to add little touches to the decor. My most significant one was the two little Indians.

f542149fb951b7a47194a0aca18b43e3

Nige bought a Playmobile set years ago which had Indians, a canoe, wigwam, a Chief on
 a horse just so we could have ‘2 Little Indians’ – the name

of our design company. I had forgotten all about them until the morning of my trip. Harry found them for me and so I spent a thoughtful half hour assembling the figures and building the scene. The only relevant bit though was the two Indians so I placed them in the canoe and they are now eternally paddling across the dashboard on the passengers side. Nigel’s side. Well, Django’s side now.

I tidied all my bits away and pulled out the bed to save me having to do it later. I slipped Django onto his walking lead and took him for a stroll. Naturally we headed down to paddock 9, where Nige and I stayed on our first and last trip here together. The main gate was padlocked – I think because it’s a field and needs to ‘heal’ if you like, before the peak season begins next week. I was a little concerned as the gateway to Nick’s (the only way I know of getting to his) is through that field… Then I remembered the walkway around the outside. It’s set up as a nature trail and leads you past the Pygmy Goats. Django froze as the goats stood on top of their little houses and peered down on him. I love them! With words of encouragement and much pulling of the lead, I managed to get him past them all. Yes, the gate was still there and accessible. The Hebridean Sheep were in the far field. As I walked passed the gateway and took in the field something strange happened. I could see every motorhome, camper van and tent that had been there on our trip together. Including ours.  With each step Django and I took the scene filled up with the past. By the time I drew level with our pitch from the past I could see Nige, chatting to the young couple from Calne, who were lighting a barbecue. I was lying on the bed watching him proudly as he talked optimistically about life. The tears were falling. I hadn’t expected this.

5pm. That’s about right. I grabbed my bottle of Peaky Blinders Gin, some tonic, treats and poop bags for Django and set off for Nick’s. Back to the Pygmy Goats. Yeah, Django still didn’t like them… As I got to the gate I could see the Hebridean Sheep spread out in front of me. “Shit!” Nothing for it though, he’s on a lead and I’m a country girl. Over the stile, head down, one stoic foot in front of the other. Of course, stoicism is easier without a large puppy bunny-hopping excitedly through a water-logged, rare sheep inhabited field but we got there… At the sight of the fisherman’s cottage I cried again, as I recalled the stilted conversation Nige and I had had. The whole walk was punctuated with memories akin to this; gentle, simple conversation due to his illness that filled me then with sadness now destroyed me. I guided my beautiful hound through the flooded pathway, I found myself laughing at the ludicrous situation we were in. I smiled at Django’s unending bounce no matter what was ahead. The similarities between him and my beloved man were not lost on me. Amidst all this heartache, I met a young couple who fussed Django nonchalantly yet with affection and two young girls who fell upon him with lots of ‘Ooohs!’ and ‘Ahhhhs!’ No one noticed my distress and I genuinely feel that maybe I just don’t wear it… I feel it – hugely. At Nick’s Django escaped wth him to the garden. I found myself collapsing into Shelley’s arms. You see, that’s what a ‘safe place’ is all about.

I had the best evening. Nick cooks so beautifully, he really puts passion and heart into what he serves up. Nige always adored his food too so I felt a real connection as I savoured each mouthful. Shelley kept me topped up with, first, gin and then, later, coffee. Django and cousin Amy bonded with some rather complex mouthing… Their relationship is an ongoing adventure! At about 11 Nick was ready to walk me and Django back to the campsite. We went a different way – less water-logged. Somehow we ended up on the main road to the site. I did think he’d leave me at the gate but he didn’t. He walked me right back to the van. He watched as a lifted Django up and onto our bed. Then, with a heartfelt hug, he left me to my first night alone on the van. I could not love him more.

One of my concerns initially was Django’s insane biting. I thought he’d just rip everything off the roof, that he’d chew anything else and possibly eat me alive. But I underestimated just how much your puppy adores being with you. He snuggled up next me, as I watched Guardians of the Galaxy (thank you electric hook-up!) and he came with me the first couple of times I needed a wee. After that he just sat and waited for me! We didn’t wake up until 9, and the sun was shining. 29542430_2131446107092901_5989086490392840998_n (1).jpg

*

As I packed the awning away (badly) and drank my coffee, I felt accomplished. I thought about other widows and widowers I knew and felt, not superior but knowledgeable. I wanted, right there and then, to say to them, ‘Do it.’ No drama, just be. Because, yes, it’s emotional. Yes, it’s hard but, man, it’s the ONLY way to move forward. And I know that if I don’t move forward I may as well turn the steering wheel into the path of on-coming traffic… And I haven’t done that yet.

Please join me on more journeys with my dog. Next stop: Brean. Probably.

 

Advertisements
Standard
Diary

The Only Way

I have no idea how or where to start. I think I’ll just wander through my head and let the words flow. Or not. We’ll see.

Those who have followed our journey will know how determined I’ve been in getting my beautiful man the most dignified route off of this mortal coil possible. A vague and hopeful notion at the beginning which became an absolute after his ‘false alarm’ in August. No thin, blue blankets or dingy side-room, not when the view from our own, lovingly chosen bed, in our prettily decorated bedroom was so stunningly beautiful. No.

I’m sure I voiced this wish of mine but maybe not too loudly and probably not to Nige. What would’ve happened if I’d berated the notion of dying in hospital and then, due to no fault of ours, that was what we got? It so nearly went that way too. So I dug my heels in more and promised Nige he would never go back to hospital. He chose to stop the ineffective chemotherapy and we started visiting Dorothy House instead. I’m crying now at the memory of his face as we walked through the main door, into the waiting room with a sweeping oak staircase on the left and a huge open fireplace on the right. Every week I took him to see Steve for his physio, every week he went in tired and came out invigorated. We did that up to the beginning of December. Nige was genuinely fed up when it stopped but his exhaustion was so very acute that it became unsafe. I hoped it was a blip and that next week we’d be back to it. It wasn’t to be and he never asked about it either.

So it was just me at home really, with a little support from the boys. Things had to change at some point; Ann from Dorothy House told me that right from the beginning. I heard it all, took it all in and filed it away somewhere. “Carers, respite…” No; “Me, home, bed…” And in the end we were both a little bit right. Though I was more right (of course).

After Nigel’s fall on the 18th of December, he took himself up to bed. Although he continued getting up for the toilet, he never came back downstairs. The nurses still came though, to check his blood sugar levels and, slowly, they slipped into my life. I felt comfortable with them there, bathing Nige in bed and it meant that I could share any worries I had. It turns out I had quite a few…

They saw me struggling to get Nige to the bathroom – two days later we had a commode and a bed bar so he could pull himself upright. The commode was the biggest help yet when first offered one I said, “No, no, I’m fine…” It took me almost a week to succumb. Same thing happened with the Over Night Respite Care. Actually, that wasn’t really that helpful. Twilight Nurses? “Honestly, I’m fine…” In just a few weeks the bedroom resembled a ward, with a commode, bed bar, back rest, slide sheets, handling belt, ankle pressure mattress and a whole body mattress topper – you turn your back for a second!

In the final week carers were introduced. It started with a letter from Virgin Care telling Nige that he qualified for care… Then there they were, complete with file, three times a day (four, if I wanted). I know I would’ve got used to them but I didn’t have to. I think we had one complete day – maybe two. On the Friday he died, Anna knocked the door. The nurses had been around a few times to set up syringe drivers and Anna was dropping off more meds.

“I’m so glad you’re here. He’s not right, he’s been different all day.” 

It started with no appetite. Then, at about half 4, his breathing changed. He was shaky, and sounded like he was straining. I told Anna that at first I thought it was serious but then I started to think that maybe he just needed to empty his bowels – it had been 12 days. Anna concurred that he was straining and did a sweep. He was more comfortable then, his breathing, still laboured, was less pained.

“I’m not going to say that things haven’t changed because it’s hard to tell but…”

“I know. I know. But at least he’s less uncomfortable… and he’s had a pretty blonde nurse put her fingers up his bum, which I’m sure was on his ‘to do’ list!”

I think we both knew that the beginning of the end had started. With Gabe at work and Harry in the garden, I perched on the bed and took his hand… His breathing went through stages, each one gentler than the last. As the tears fell he slipped away. I waited and waited for the next breathe… and waited.

*

We stayed in the room, with our man, our sweet, breathless hero who had battled for too long. I don’t just mean the illness. Between tears the boys and I reminisced about Nige, things he said, things he felt. We were his everything, he had told us.
“I wanted my family to be that but they showed me over and over that they didn’t want me. So that’s it; I’m done. I hate them all.”
It was as simple to him as that. And, honestly, I couldn’t blame him.
At about half 11, two District Nurses arrived to lay out his body. We stayed downstairs until they’d finished and joined us.
“You need to call the Funeral Director. Do you have anyone in mind?”
“Not really. Co-Operative? I drive by that one on my way home from work…”
Gabe said, “Maybe anyone else? Other than the Co-Op? I mean, it sounds a bit…”
“Hunt then. They’re in Moorland Road.”
One of the nurses said that they’d used them and they were very good so that was that decided. I rang them up and they assured me the Private Ambulance would be here in about an hour and a half. The nurses took their leave, once again it was just our hero and us. Together we decided to see Nige ‘laid out’. Harry and I had chosen a t-shirt and pants for him to leave the house in. But I think it’s fair to say we were not prepared for the normality clothes added to the whole situation. Before he was Nige, the long suffering patient finally come to rest. Now he looked like Nige; artist, designer, husband, father, lover, friend. We had lost that Nige some months ago, of course, but the mourning of that loss had never really happened. We thought it had but we were wrong. I thought my heart couldn’t break anymore but it did. It shattered beyond repair. As I looked at our two boys, I saw their hearts go the same way.
“He’ll never really leave here will he, he’s everywhere.” 
And Gabe was right. As I gazed around the bedroom, Nige’s art work gazed back. His books filled the shelves and his personality shone out from every corner. That was just one room.
We again went downstairs, awaited the arrival of the undertakers. Alex turned up first, and what a lovely sight that was! He hugged us all, made tea and paid his respects to the man who had driven him to Guildford many a time and who had ensured that he and Gabe had a cupboard full of food before he left them to their studies.
It was after 1am that the undertakers got here. We followed them upstairs – like ducklings really, the three of us in line. Harry cleared the landing and stairway as we left them to it.
“Should we follow them out?”
“I don’t know. Should we?”
“I think the fact we’re finding it so hard means we probably should…”
We did. They carefully carried the body-bag down the steps with us trailing behind, bravely. At the bottom they interred the body in the black Private Ambulance. The road was quiet and empty, not a soul was there to witness Nigel’s last journey from our home aside from Harry, Gabe, myself and his own. It felt perfect. It felt calm. It felt right.
If the first was Nige the patient and the second was Nige the man then this was just the body. Seeing it like this has enabled us to deal with the funeral arrangements with a certain detachment. We know the body in the chapel isn’t Nige; that he is forever here, with me, with the boys, in our lovely little home on the edge of Bathampton woods.
*
img_8381
Standard
Diary

Well, Come On Then…

All was quiet on New Years day because both boys (one in, one out) were nursing hangovers and Nige was sleeping off his nocturnal activities. Whilst we awaited Gabriel’s ‘walk of shame’ home, Harry and I launched ourselves at the Lego! I tackled the Hogwarts Express, the reason I wanted it down from the loft in the first place, and Harry embarked on a far more complicated space thingy from Star Wars… Somewhere in between cursing and silent celebrating (only Lego users will understand this) I produced a New Year dinner. Sure, we had to sit on the sofa and eat off our laps but we’re adults so we endured it like heroes. Dinner ate, pots done, back to Lego.

2nd (Tuesday) Given how rough Sunday night was, I was surprised at how much better Nige was last night. Still, the District Nurse has referred me to the Hospice at Home team at Dorothy House because, I think, of my refusal to allow Nige to go into Dorothy House for respite care. I’ve said on here before that my time with him is limited already, I’m not interested in limiting it even more. Anyway, I conceded to having a carer stay in the house over night to help Nige, thus enabling me to sleep, especially as I feel a bit of a cold coming on… The idea of catheterisation came up again. Oh I don’t know. It’s so undignified, isn’t it, having a bag strapped to your leg and a pipe up your whatsit… But then so is having your 5 foot nothing wife unceremoniously hurl you onto the commode and back, or, worse, pissing the bed. None of this is dignified in the conventional sense anymore. So it has to come down to safety – Nigel’s and mine…

3rd (Wednesday) Another alright night and my cold seems to have come to nothing. Hospice at Home rang,

“Hello, is that Lisa? You’ve been referred to us by Sally and we have you down for tonight!”

“Oh wow, really? I’m not sure how it all works but…”

“Well, Jenny will come round at 10 and stay until 7 in the morning.”

I wasn’t sure what the set up would be – would she sit in the bedroom with us, or am I expected to sleep somewhere else?? All these doubts almost made me say, “Thanks, but no thanks.” but I didn’t! I thought, ‘Give it a go, work with it!’

Just before 10 Jenny arrived. We had a chat and I introduced her to Nige and Gabe. She asked me how ‘it’ had all started and I told her. It was rather lovely to talk to a stranger who knew as much as, if not more than, me about this shitty brain tumour stuff. And not the medical bit either; I’ve had my fill of that. I used her time here to sort out the kitchen, clean the sink etc and went up to bed at my usual 12, half past. There I stayed until about 5.30am, when I gave Nige his Oremorph. Then, again, at about 6 when he needed to pee.

“Oh I wonder if Jenny can help with that…”

And up the stairs she came, like a Fairy Godmother. But then I learnt that they’re not allowed to lift. Well, that’s sort of the thing I need most help with… and if I’d slept elsewhere would she have woken me up? Hmmm, I was a bit baffled though I did understand her position. I was grateful for her support anyway – every little helps, right?

4th (Thursday) Mum and dad came this morning. They actually woke me up from my mid-morning nap on the sofa. We had a lovely morning, chatted more than usual and they went in to see Nige, which was great. After they’d left, Amanda and Rachel (Nurses) turned up. They were full on, trying to sort out carers, medications… me. They’d also brought with them a catheter but I wasn’t ready.

“But it will make your life so much easier Lisa.”

“I get that, I do, but the only time he leaves the bed is to pee. I don’t want to take that away yet…”

“Oh bless you, you’re still thinking of him first!”

We talked about the safety issues with me moving him so often and I was left with an awful lot to think about,

“Let me chat to Harry and Gabe, see how they feel.”

After they’d bathed Nige they checked the ‘Just In Case’ box. Marianne and Jane had arrived by then – such a busy day! We hadn’t seen Jane for a while so it was extra special when she went upstairs to see Nige. We chatted over tea, the three of us, whilst Nige slept; they both stayed for a good couple of hours. The rest of the day was pretty chilled, but that’s what having company does, it sets you up to deal with everything else.

5th (Friday) We had another uninterrupted night, waking up at 7. I gave Nige a dose of Oremorph before going downstairs to sort out his breakfast and meds. I happily and methodically moved from one little job to another, even transferring Nige back to bed from the commode with uncharacteristic grace. Halfway through the morning Hospice at Home rang,

“Hello Lisa. Your down to have a night carer again tonight… Is that something you still want?”

“Oh, hi! Um, actually he’s been really settled the last couple of nights so I’ll give it a miss if that’s okay.”

“That’s lovely Lisa. We’ll ring you again next week.”

The shower bits arrived today so I waited for them in the studio. Whilst down there, Anna (my favourite District Nurse) turned up. She helped me with my delivery actually as we nattered on about this and that. We were awaiting some meds so she arranged to bring them later, with Sally. I had wanted to do the food shopping – not for the shopping bit but just to get out – but Gabe didn’t get home until later so I’ll have to do that tomorrow. I did win the table on eBay though and so a quick trip to pick it up from Corsham at about half 7 got me out. Then an impromptu (always the best) visit from Michelle just as I got back gave me the perfect excuse for a glass of wine.

So, a busy day then, with lots happening to distract and engage me. And Sally and Anna returned with the meds we need. Nige was catheterised too.

 

Standard
Diary

Well, Come On Then…

That bit between Christmas and New Year is a funny old time. It’s just 6 days but it feels longer some how – it always has. I think it’s because you go ‘off grid’; you have no clue what day it is, just a vague idea of the date. Now we have a myriad of ways to watch TV, you can’t even rely on your planned Radio Times viewing to get your bearings! So it is, I will fill you in on our ‘Bit Between New Year Tale.’ It won’t be chronologically correct, I’m sure, but you don’t know that. Well, you didn’t know that; you do now…

Boxing Day (Tuesday) I like Boxing Day. The dust has settled and the silence is blissful – aside from the actual date, it’s got a much more ‘new year, new beginning’ feel to it. Marianne visited for a coffee – hazelnut latte – and a chat. We compared Christmas Days; not much between them to be fair as Mike was ill in bed all day too! Anyway, I mentioned New Year and she might pop round. I’m dreading being on my own, for I’m sure the boys will be at some party somewhere, and I’m pretty sure Nige’ll be asleep cometh the hour.

27th (Wednesday) Well, the vinyl floor for the studio turned up today. I had to check my phone to check the date, nope, it’s not the 2nd of January… No matter, I was chuffed to bits. Despite having had 2 glasses of wine, I threw myself into laying the floor. Hmm, surprisingly easy actually. Needs a trim but I’m sure Nick will do that when he comes over to do the skirting.

28th (Thursday) Lovely to see Nick today. He came in to fit the skirting board in the studio. What a difference it made! I filled the holes in this evening and will need to paint it at some point. That’s if I can stop Gabe filling the room first…

29th (Friday) I had a lovely, unexpected visit from Sue today. She came laden with wine and gifts and open arms. I wept on her shoulder, as I filled her in on what’s been going on here. She stayed for quite a while talking about her Christmas with her poorly aunt, work and life in general. I consider myself incredibly fortunate to have a boss who is so understanding and genuinely concerned for my welfare. It makes this enforced leave of absence of mine so much easier to deal with. Man, I miss work.

This afternoon I dismantled the huge oak table, ready to go down to the studio. I eventually got Gabe to help and between us and Harry we managed to get it down and put back together. Gabe’s unsure about the size but I think it looks great. Anyway, it was always meant to go down there so that’s where it’s staying!

This evening Michelle popped in for a glass or two. Her Paul had fallen asleep so, as we both had sleeping husbands, she decided to call round. It’s lovely when people call round unexpectedly, so much better than when it’s planned. It’s like finding a fiver in your jacket pocket.

30th (Saturday) Matt and Gem came round this morning, primarily to help me order the stuff for the shower room, but it’s always lovely to see them both. We had a lovely chat in between sorting out Nige and helping the nurse with his bed bath – nice to share my day with others really. After they’d gone I set about ordering all I needed for a rather splendid shower room. That’s another job done. Gabe carried on moving his music stuff down to the studio. It’s looking wonderful.

This evening we had an unsettling exchange with Nige. None of us really knew what was behind it but I’m guessing it was borne from frustration, boredom and fear. It started, I think, because I was a little less graceful than usual getting him on the commode. This was due to my fragile back that just can’t hover, waiting for him to be ready anymore. I may have muttered an obscenity too, just to help with the motivation. Anyway, Nige felt like he was too much trouble for us,

“Why don’t you just fucking get on with your shower [life]” 

and more of the same… We all felt that this was it. That this was Nigel’s exit cry. As I held his hand (once successfully calming him down and getting him back into bed) he said,

“You need to keep in touch.”

“I will. Of course I will.”

I’ll not elaborate – it’s not an easy night to recollect honestly. The upshot though was a confused Harry and an upset Gabe. Me, well, I get it: he’s isolated, lonely and scared. I feel the same way.

New Years Eve (Sunday) Food shop! Normally I loathe this but today I nailed it. I think the sense of freedom helped. That and the need for food in the house to survive. I was home by 3. Harry was giving Nige a dose of Oremorph having already, along with Gabe, helped him to the loo. I’m so incredibly proud of them both, our little soldiers.

Neither of the boys had plans for this evening – we don’t make plans anymore. In fact, I was the first one to have the evening planned with a scheduled visit from the Twilight Nurses (!) and Marianne. We’d anticipated my loneliness on this over-hyped night and she thoughtfully offered to keep me company. Besides, Mike was poorly too so there was little point both of us sat twiddling our thumbs in different houses! Then Harry formed a planned that involved me as a driver… I took him over to Southdown at about 8, the very time Marianne was arriving at mine. Gabe played host until I returned and stayed in until about 10, half past. Then he too disappeared into the night of revelry. As Maz and I drank our Babyshams, picked at pistachios and nattered on, Nige was audible over the monitor. Only once or twice did I have to go up to help him to the loo. Maz left just before midnight, so she could see New Year in with her man – and rightly so.

I went to bed just after midnight so this should be labelled New Years Day (Monday). There. Nige woke for the loo at 2am. I lifted him, he sat, did nothing, I lifted him back. 2.30am he sat himself up. I asked if he needed the loo,

“No, I’m fine. I’m fine.”

“But you’re sat up lovely. What do you want?”

“Nothing. I’m fine…”

“Do you need a wee?”

“No. I’m. FINE!”

“Do you have a headache?”

“I think so.”

So I gave him a dose of Oremorph and went to lie him back down to sleep. He then pee’d all over me, soaking the mattress and sheet at the same time. By and large I kept my cool,

“Oh for God’s sake Nige! When I ask you if you need to wee and you do, please say ‘yes’. You know I am happy to help you…”

“I know, I know. I hear what you’re saying.”

“I don’t think you do Nige. I think you think you can do this alone but honestly, to keep us both safe you need to listen and accept my help. Do you understand that?”

“Yes.”

I cleaned up as much as I could: First I put him back on the loo (commode), so I could lift the mattress up to get the counterpane off the bed. Next the carpet, followed by a towel over the wet bit of the bed (no clean sheet as it was in the tumble drier). I then, somewhat grumpily, lifted Nige back into bed, cleaned him up and settled back down. 3.30am I awoke to Nige saying,

“I need my tap.”

I asked if he wanted the loo (of course) and he repeated that he wanted his tap and then asked,

“What do I mean; tap?”

“I don’t know… Do you want a wee maybe?”

“Yes.”

Up again, lift him to the loo,

“What are you doing?”

“You said you wanted the loo!”

“Nooo! That’s not right…”

“Well, to be fair you said that last time and then pee’d on me so… if you don’t mind…”

“For fucks sake!”

He sat there for a while,

“Have you finished?”

“Yeah.”

I lifted him back, sat him on the bed. There was nothing in the commode. And then, you guessed it, he pee’d all over me again!

“You said you’d been Nige!” Deep breathe, “Never mind… Come on.” Big hug.

I was up a few more times after that but they were pretty uneventful, aside from adding to my already singing lower back… At 7 I got up, fed the cat and tried to stay downstairs. Nige was still quite unsettled though so I curled up in the tiny space remaining in bed and went back to sleep.

You see, I told you New Year was always shit.

 

Standard
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.

Standard
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 

Standard
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.

Standard