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.
Early last week Tony’s car was picked up by our car dealer; we’ve been dealing with same car dealership for almost 30 years and they were happy to buy it back. On Tuesday Tony’s 2nd pre-loved scooter arrived – he took it out onto the road & back but that was all.
My sister Ailsa came down for the weekend and yesterday she went for a walk up town, so Tony went with her on his scooter. It seemed to go well and there’s okay crossings the whole way.
Ailsa gave me hand to do some of the household jobs I can’t manage, while I cleaned the kitchen windows, rangehood and took the stovetop apart for a good clean. I got up and down off a kitchen chair a few times and my knees have had enough. I’ll be taking it easy for the rest of the day and waiting for the Brufen to kick in.
Goldie has finally discovered, at 15, that getting onto our knee for a cuddle is actually ok. Until now she’s sat on the arm of the chair and put her front feet on your lap. Today she got onto Ailsa’s knee for a pat and was purring. Goldie was a semi-stray and it was Ailsa who rescued her as a kitten – we always say it’s Ailsa’s fault 😉
Change – sometimes we fight it, sometimes we accept it. Our lives are changing a lot at the moment and, for the most part, we’re accepting it with (fairly) good grace. That doesn’t mean we like it, but we know fighting it will only make it worse.
Oddly, for me, as Tony’s health has got worse over the last few months I haven’t said much on FB. Twitter is my late night support, so I’ve been more upfront there. Perhaps I haven’t wanted to deal with people who know me – know us – reading about it? I’ll come back to that thought. Twitter is more anonymous, despite being a group of people who provide me enormous support.
Since Tony’s last two stays in Base Hospital, including HDU, his health and quality of life have deteriorated. The list of medical issues we’re dealing with has got longer – as one Dr said “we’re dealing with multiple significant health issues and it’s a juggle”. Tony’s decided we won’t investigate anything new, we’ll just deal with existing issues, and I support his decision. As a result he’s cancelled some scheduled tests.
He’s on serious pain relief, and has some memory and cognition issues too as a result of his vascular problems. Tony doesn’t feel as confident driving any more – something he’s always loved – and, combined with the medical issues, has decided to sell his car. Next week he’ll be getting a wee red mobility scooter so he can zoom up town and buy milk etc.
It’s a big change for us. He can’t go and visits friends on his own. Vet trips with our ancient cat are up to me, as is buying the groceries and so on. On a good day he might decide to use my car, but I doubt it. And of course we’ll need to use Standby for all his out-of-town medical appointments.
So, lots of changes. And not great ones either. But it’s ok … and we’re ok.
And coming back to writing this for the people who know us personally. I now when I’m talking to people at work, like my boss, I am very matter of fact. It’s not that I’m not feeling it. It’s the opposite. I can’t afford to start talking about the emotional side most of the time – there are a few people I rely on, and everyone else gets “just the facts maam”.
Cath Sheard Art 