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.