Tomorrow I’m having a gastroscopy to check if the ulcer that caused my perforated bowel back in April has fully healed yet. The surgeon who repaired the leak will be doing the procedure, which I’m grateful for.
He’s patient and professional, and happy for me to listen to Pink on my phone while he works. The music helps me zone out, because having a camera shoved up your nose and down into your stomach without sedation isn’t much fun.
Last time I had it done, in 2017, there was a medical misadventure that ended with me on life support due to Aspiration Pneumonia. The photo below is the immediate aftermath. That blog post is here https://cathsheard.wordpress.com/2017/05/07/hospital-dramas/. We’re all determined this time will be drama-free! I’m hoping the ulcer has completely healed, so fingers crossed.
Tony came home for about 5 hours today, and we had a visit from his good friends Doris and Dan, and his brother Roger. The photo is an older one, when we met up with Doris & Dan in Hamilton.
We sorted all his clothes and labelled them – I have a pile to wash and take to the Op Shop. We have his funeral clothes chosen and put aside. He’s picked what ornaments etc he wants, things with special memories, and we’ve put them in his room. His new duvet is on his bed, and I’ve got a cork board to go on the wall so he can put photos up. The room is looking like his now.
Having Tony home was good, but also a bit stressful. I guess it’ll get easier over time? It reinforced how fragile his current relative wellness is, and how easily it could be unsettled. Still, while he can come home it’s nice for us to spend time together at the weekends – we need to make the most of these pockets of time together.
I few to Christchurch today, and Alan picked me up for a break in Hokitika. Tomorrow I’m getting ready for spending the day working large with Penny.
I talked to staff at the rest home, who felt Tony was quite unhappy. Not surprising. I spoke to Tony and, although he sounded tearful once or twice, he was trying hard to be positive. We talked about his there is no choice any more.
We’ve both got a lot of changes to get used to and it’s going to be difficult. The only thing we can do is try our best and take each day as it comes. The photo below, of Tony with his good friend Doris, reminds me how much he has changed and why we’re at this point.
Tonight Tony and I moved him into Te Mahana for 10 days respite care. He had the choice of the (bigger) respite care room, or a smaller one that will be his permanently if he stays. He chose the smaller room “because I only want to move once”. He seems quite settled tonight and more accepting. The reality is, he may come home for a couple of days when I get back, but I doubt even that will happen. This is permanent becasue we just can’t keep him safe & he is very frail now.
Last night he was really unwell. I put him to bed about 7 and lay holding his hand while he slept until about 9.30. He was feeling very sad, but that seems to have passed. As I said to him tonight, we’re not the first couple to face this and won’t be the last.
So how am I? Sad. Relieved. Sad. Relieved. Repeat…
I took a video to show family his room and this photo is a still from that of him waving for the camera 🙂
Tony and I have a lot of rough days now and today’s been rougher than most. I’m grateful for a great boss, good friends and supportive family. I’m also grateful for my art, which helps me relax and gives me a place to pour out my feelings.
I’ve been saying for a while on FB that Tony isn’t very well, but haven’t gone into a lot of detail. I’m more open on Twitter because family don’t see it (with one exception – sorry Ro!). It’s where a lot of my support network is. Now it’s time to put a bit more on my blog.
Tony’s got multiple complex health needs – diabetes, kidneys, congestive heart failure & AF, peripheral vascular disease, lung issues and there’s serious problems with his gut. We’re not investigating any of it because he doesn’t want much intervention and isn’t well enough for surgery etc. He lives on Fortisip, yoghurt, and ‘baby veges’ i.e. mashed potato, pumpkin, carrot etc and very occasionally a tiny bit of pork sausage from Normanby Butchers cooked by Tairoa Lodge. Oddly, it’s about the only meat he can eat.
He had a fall last Sunday and again early this morning. No broken bones, but a decent bruise and painful lump on the back of his neck. Hospice think he’s having TIA (transient ischemic attacks) which are like mini strokes caused by a clot blocking blood supply in the brain.
They seem to come in swarms, leave him very sleepy, with slurred speech for a bit and a few other physical signs such as his hands dropping constantly. He also talks rubbish for a bit – we’ve both had a few laughs out of it. I can kind of spot when they’re going to start now, which isn’t as useful as it sounds! After they stop, he sleeps deeply, often for only a few seconds or minutes at a time, but falls asleep over and over for hours.
I am booked to go for a break at the end of this week. His brother Roger and a caregiver/friend, Janet, were going to look after him at home between them. After this morning’s fall we’ve agreed that’s not safe so he is going into Te Mahana for respite care, and to try it out. It’s a big step but feels inevitable.
We sing along to songs on the radio about drugs and sex, watch all kinds of things on tv. Yet there are still things society tends not to talk about and poo is one of them, so is death and dying.
Once you start dealing with both chronic and acute illness, serious pain relief, and the slow process of dying you realise there’s nothing sacred any more. Ever asked your significant other if it’s taking them ages to pee? Checked if they badly constipated again? Or cleaned up a poo puddle because the meds went too far the other way?
At the start of a relationship it’s all sweet words and date nights. Lovely! Then something happens and you’re dealing with medical issues. Over the years both Tony and I’ve had serious health stuff happen, and we’ve both done the nursing.
Now it’s my time to nurse him, and some days it’s hard. Really hard. But, after nearly 30 years, we can talk about poo, pain, death and dying. Fun? No, yet it’s also ok. The conversations matter, and sometimes there are tears, but I’d rather we talked than I had to guess. I just wish more people talked about the hard stuff.
Brief because, unusually for me, I haven’t got a lot to say (sort of).
Sandra – my best friend of 53 years – spent Friday & Saturday nights with us. Bruno, her wee rescue dog, glued himself to Tony. She got out & about, taking incredible photos for her travel blog. The ones she took of the wreck at Patea beach are incredible, it’s the most exposed we ever remember seeing it.
This afternoon I went to a work friend’s baby shower, which was way more fun that I had imagined. Tony’s brother Roger came round for dinner and got here about 15 minutes before me – and 20 minutes after Tony had a decent fall. He was heading to the kitchen on his walker and got super dizzy, tried to grab the doorway and missed. The walker went forward and he went backward, fortunately landing on his bum rather than hitting his head on the wall. He’s ok but stiffening up and I suspect there’s going to be a great bruise.
He had a very rough day, again, with his tummy on Thursday and that evening we had a brief chat about the fact one day he will need rest home level care. Tonight he and I have talked about how he’s getting dizzy more and more often, and that I worry about his safety when I’m not here. He has a medic alarm but his memory is not always great and this afternoon he didn’t think to use it. We’re talking about the merits of Te Mahana, where he might know people, versus Hawera where I could pop in during my lunch break and after work – or be there in 5 minutes if they needed me.
The time isn’t yet, but it’s approaching – maybe quite fast. Like almost everything, we’re talking about it, planning ahead and having the difficult conversations.
The only way forward is one foot in front of the other – left foot, right foot, hayfoot, strawfoot. That’s Tony and I at the moment, just putting one foot in front of the other.
I’m healing okay but have to be careful; if I do too much or eat the wrong thing, it hurts under my ribs, which – in a medical sense – is a million miles away from the actual injury. No wonder I got so sick without us figuring out the problem!
In the last week or so, with Hospice’s advice/support, we’ve made a change in how we view feeding Tony. Until now, my default has been to make him a “proper” meal unless he doesn’t want it – which he normally doesn’t – in which case he’d have something like yoghurt or baked custard and stewed apples. Now my default is custard etc unless he wants a proper meal, and he doesn’t. They also suggested “baby veges” so we’re trying him on mashed potato, pumpkin, carrot & parsnip. So far, so good and it doesn’t seem to give him unpleasant hiccups like other food had started to do.
Nutritionally it’s not ideal of course, but he has two chocolate Fortisip a day which is sufficient calories etc to be going on with, given he doesn’t do much now. Most days he does a little on his latest project (he’s finished a model truck and is onto a paint by numbers Yoda) and dozes while listening to music. He’s often in bed by 8.30 or so because he’s tired out.
He’s dizzy a lot of the time now, so Mum’s walker is back in use and Goldie is delighted. She sits on it and seems to feel quite at home – bless her ancient creaky wee soul!
We’re grateful for his carers who come in twice a day, Hospice staff who ease the load, family and friends who check on him, and my work who are always supportive.
It’s now 3 weeks since my surgery and I’m healing well (mainly lol). I went for blood tests Tuesday then saw the Dr Wednesday. He wasn’t totally thrilled and sent me to A&E so they could re-x-ray my tummy to check for leaks, and redo the bloods. Dr Georgina and I had a long chat after the x-rays checked out ok, and decided I just wasn’t resting enough. It’s hard to rest with Tony so sick, but I’m working on it 😉
Speaking of work, tomorrow I am returning to work but only doing half days from home. I’m looking forward to it. I love my job, and miss my colleagues and staff. But I also know my brain is still a bit fuzzy and I tire easily, so will make sure I work to my own pace. This week I just need to clear a bazillion emails and do the quarterly financial reports.
Today Sandra came up from Whanganui and took Tony to Hawera. They went to Bunnings so he could buy Tulip bulbs then had lunch at Upside Down Cafe. I’m so grateful to her for taking him out, at his pace. They’ve always been good mates and getting out of the house is good for him. He’s worn out and has pretty much been asleep ever since, except for dinner of Instant Pudding and tinned peaches!
We’re fortunate to have people helping us in a variety of ways, and I’m grateful for the love and support we receive.