“I can only imagine how you feel…”
“Well, I don’t want to sound, you know, but I had 16 months to imagine how I’d feel and, honestly? I wasn’t even close.”
Nothing was what we once were
And happiness didn’t live there.
Then something became available
We breathed a breathe,
Took a step,
And happily became a pair.
Something was better than nothing
But something wanted more.
So children beckoned us in
We breathed a breathe,
Took a step,
And delightedly we became four.
Everything is what we had then
Nothing fazed us, you see.
Then fate decided to show
We breathed a breathe,
(A long, slow breathe.)
We took a step,
(A faltering step,)
And pulled together as three.
Nothing is what we are now,
Something is missing in here.
But we hold each other tight
We breath a breathe,
We take tiny steps,
We stand together,
Forever and ever.
Everything shows us you’re near.
“People say, ‘Oh, he lives in my heart,’ and I go, ‘Yeah, yeah, no, I know,’ but he doesn’t. I mean he’s in my heart, but he doesn’t live at all.”
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.
“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.”
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.
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?”
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?”
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?”
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.
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.
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!