Some weekends, aside from cooking meals & basic things like washing etc, I spend both days at my art desk. This is one of those weekends. Tony is in more pain and sleepy so he’s sitting in the lazyboy, napping, while I play with my art supplies. Art is good for me – the movement of my hands, the meditative sense of slowed-down time when fussy cutting out images, and the chance to get my thoughts & feelings out of my head and into my art journals.
I’ve been working in my large Dina Wakley journal, and the large Dylusions journals. I’ve really enjoyed playing with Steampunk images for a change.
Some weeks are pretty ordinary, others are a bit more full on – last week was BIG. We had an appointment with the respiratory specialist on Tuesday. We were also seeing the Hospice Dr for advice about how much Tony sleeps sometimes and how incredibly drowsy he can be (sometimes he falls asleep while I’m talking to him and I don’t think I’m *that* boring!), and a wound specialist about his foot ulcer. Tuesday morning I phoned Breeda for additional advice about some stuff and she said to go in straight away, which we did.
I won’t bother going into the details but Tony was very sick; they decided straight away a night as an inpatient was needed to get things sorted. They suggested I stay, as he was having trouble answering questions, so I camped out on a sofa bed in his room. We had packed his hospital bag, but nothing for me, so I had to do an emergency run to The Warehouse. This weekend I’m packing an overnight bag for me for whenever we go to A&E or Hospice, just in case.
They changed him from Morphine to OxyContin because, although still an opioid, it has different side effects & will hopefully suit better. He’s certainly having less hallucinations, and the ones he does have are much less vivid. So far, he hasn’t been as drowsy either, except when he’s had a decent dose of OxyC. They also dropped the dose of some other meds, as the muscles in his thighs were getting weak and it seems to have helped.
On Wednesday they felt things were improving but suggested a second night and, somewhat reluctantly, he agreed after I pointed out that him insisting on going home puts a lot more pressure and responsibility on me rather than the experts. Good point! Wednesday evening was very rough, but he woke Thursday looking and sounding so much better. One of the nurses commented that she’d had no point of reference because he was so sick when we got there, and it was nice to meet the real Tony.
We headed home midday Thursday and, while things are not great, they’re a lot better. At their suggestion, I rang the DHB and from next week Tony will have a caregiver for 30 min every weekday lunchtimes to check on him, as well as the morning one.
He’s had some high pain times already and I’ve had to ring Hospice a few times for advice; I appreciate how supportive they are. I’ve got to ring tomorrow and speak to the Doctor because the nurses think the long-acting OxyC needs increasing so he gets less breakthrough pain. As always, I’m thankful to family and friends, and my Twitter pocket friends, for their support and love – this would be an even shittier journey without them.
We loved that the beds have beautiful quilts, and it all feels quite homely.This is the semi-private courtyard outside Tony’s room at Hospice
Last week had its ups and downs. The downs I’m not documenting… The ups included an amazing fishing trip for Tony, something that was on his very short bucket list.
Tomorrow we’re seeing the respiratory specialist, Dr Hicks, to get the details of his latest lung MRI, to confirm a few things. We’re supposed to see the Hospice Dr to look at his meds, but this might not happen due to COVID19 level 2 – Breeda is trying to sort it for us. Tied into that is a meeting with the Hospice wound nurse to have a look at the ulcer on his foot.
I continue to art out all the feelings. I’m so grateful for my art journals as I’ve been feeling a bit unwell, and my temper starts to fray far too easily. I’ve been playing on my huge Dina Wakley mixed media journal.
Cath Sheard 