Tony and I’ve never made a secret of his deteriorating health, or that the decision to go into resthome care was made by the medical system. We knew the time was coming, but the choice was taken from us – which was a good thing.
In the six weeks he’s been in the home Tony has (mainly) been quite well, although he isn’t doing so well just now. A few people have made comments about how well he looks and questioned whether he needs to be there. Not helpful, even if well-intentioned.
Yesterday Sandra visited an old friend of Mum’s who was sensible enough to ask “is Tony seriously sick?” and expect an honest answer. Sandra simply said yes. Mum’s friend said “thought so”.
From the way the conversation went, I gather some people in town are discussing why Tony is in the rest home. It’s simple; he’s there because he needs to be. Yes, he’s that sick. If people want to know more, ask. We’re happy to provide the truth rather than have people make up their own version.
I’ll skip the details but Tony wasn’t great today. He was home for a bit while I was working from home, so I could attend a bunch of local meetings, but I ended up taking him back because he said he felt “absolutely dreadful”. The rest home staff said they’d call me if he got worse.
I felt we’d had far worse days at home but until now he’s been remarkably well in their care so think they got a surprise. As I said to one staff member, he was assessed as needing rest home care for good reason! He’s feeling and looking better now but hasn’t really eaten anything today.
It was an unsettling day, so after dinner I grabbed the new art journal I’ve started and made a bunch of backgrounds. The thing about creating backgrounds is there’s no real thought involved. I grab 3 sprays to lay down some colour, add more colour through a stencil or two, splashes or drips of water to activate the sprays and maybe some dark splatter. It’s about getting my hands busy and distracting my mind. I find it soothing – I believe art is good for the soul (but not so good for the colour of my hands!)
Marlow drifts in and out of Tony’s room constantly, because he has a ranch slider, but she’s not overly affectionate. I bought a bag of fancy cat treats and suggested giving her one or two at a time. She’s taken to napping on the mohair rug on his lazyboy and today she curled up on his knee for a bit. Success!
A few years ago I read “Lean in” by Sheryl Sandberg , Chief Operating Officer of Facebook. I don’t agree with everything in the book, but the concept of leaning in has its uses. Last night I wrote about my struggle to set a new routine.
Today I’ve realised I can ‘lean in’ to the lack of routine, the early nights and so on. It’s not something I need to fix for now.
I visited Tony after work but he wasn’t feeling well. At 6.30 he said I needed to go home and cook my dinner, his way of saying he’s had enough. I reheated last night’s leftovers and cleaned up, then headed for my art desk.
I’ve had a good play with paper and paint, but have still found myself in bed at 8.30. And it’s ok. I need to just lean in and do this. I also need to just sit with the “you should be busy” discomfort it causes me, because that desire for constant busyness is common in addicts. Here’s what I’ve been creating.
Since Tony went into the home I’ve been going to bed early quite often. Before, I’d go to bed about 10-10.30 but often I’m tucked up with the iPad, magazine, writing paper and a pen by 8.30. I’m not sleeping well though, waking in the night, probably out of habit from years of caregiving.
I’ve said to a couple of people today that I need to just stay up, no matter how I feel or how cold it is, and get back to my usual routine. Hopefully doing more and being properly tired will help me sleep better.
But you know what? I’m not ready for this to be normal. There’s a new normal ahead of me, but that’s not here yet either. I’m going to cut myself some slack and slide off to bed if I want to. The day will come when my old routine feels ok again, but today isn’t that day.
I said earlier this week I was making changes because life felt shitty. I’m now coming home from work, closing up the house and putting the heater on in my office, getting changed, leaving a light on – then going to see Tony. That way I don’t come home to a totally cold, dark house.
Today I used some FlyBuys points to get a small slow cooker. I can prep containers of meat, veg and sauce at the weekend. On a weekday morning throw one in the slow cooker as I leave for work and when I get home from visiting Tony there’ll be hot food ready for me. It’ll still make two or three night’s food, but that suits me fine.
Tonight I took some photos up to put on Tony’s wall, at his request. They made him tearful, but that’s ok. Marlow, the home’s cat, came in through his ranch slider and let Tony pick her up. She’s a Ragdoll but not very cuddly!
Tony and I moved in with Mum in 1998 when she got very sick. We were live-in carers for 14 years, until she moved to the rest home 6 months before she died. It was incredibly hard work some of the time, but a huge privilege few daughters get these days.
During that time I also personal care PoA for my aunt, who had dementia and needed a rest home apartment then secure unit, and finally hospital level care. Again, a lot of work. But Aunt J and I were close, and I was glad to look after her.
Within a year of Mum dying Tony had to retire due to ill health. By the time he retired he’d already had two or three surgeries. For the last year or two he’s been less and less able; the last 6 or 8 months have been pretty awful.
I’ve worked through all those years, and done my art. But suddenly I have, maybe not more time, but different time. My days are structured differently because I’m not juggling work, art and caregiving. Now it’s work, art and visiting Tony. By 7.30 at the latest I’ve seen Tony, had dinner, and the evening is mine.
At the moment I’m going to bed early quite often. It’s cold, but I’m also resting and recuperating – my own emergency surgery is less than 3 months ago.
I’ve spent most of the last 23 years listening for movement in the night, ready to get up and help Mum, then Tony. Since late last year I’ve been used to sleeping in 2 or 3 hour stretches, often only 6 hours a night. I’m learning to sleep through the night, although at the moment I’m often awake at 5 because I’m not used to so much uninterrupted sleep.
My work and art are important to me, but they’re not ME. It’s time for me to concentrate a bit more on me – on looking after myself, and on figuring out what the coming years look like. I didn’t expect to be living alone at 56, with a husband in the rest home, but it is what it is. I’m determined to make the most of it, whatever that light look like. T
he photos below are all of me, but none of them are me … that’s still a work I’m progress…
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 woke up this morning with a scratchy throat, feeling dreadful. I sent my boss a text and went back to sleep until 11am. Do I have a cold or COVID? No. As I said to Fiona, I think it was just that I’d been away and had to trust things were ok, came back and saw for myself that Tony is doing well, got a few things sorted and then – with the pressure off – my body said stop! The reality is I’ve been living on my nerves, and little unbroken sleep, for probably a year.
I’m immensely grateful I was away when he went into permanent care and, as much as it hurts my heart, I can see how much better he is with 24/7 professional care. The picture below is Tony with a Puzzli puzzle I got him; I thought it would keep him busy for days … he was finished it in 3 hours.
My flight from Christchurch got into Palmerston North just before 8pm last night and I was home by 10pm. Alan and I had stopped for a pie for lunch at Arthur’s Pass on the way over from Hokitika, and then afternoon tea at the airport so I didn’t need to stop for dinner.
The house was warm (thanks Janet) but quiet and empty…my new normal. Goldie was delighted to see me and yelled at me for a bit before getting up on the bed beside me and dribbling a lot. I think, at 16, she’s got a bad tooth or two!
I popped in to see Tony quickly on my way to work – sometimes I won’t do normally – then spent almost 2 hours with him after work. We’ve ordered a shelf for his room to put bits and pieces on, and a new paint by numbers. At the rate he is painting them, we’ll going to end up papering his room with them 😉 We’ve ordered a duvet set to make his room look more like him – pale grey/blue satin isn’t really his thing.
I’ve come home and unpacked, done the washing & put it on the airframe in the lounge seeing I never go in there, cooked dinner, cleared the mail and then sat here thinking “ok, now what?”. Normally I’d be looking after Tony or, if he was particularly well, chatting with him. I don’t want to start the paper tonight and it feels too late to start some art.
Tony & I will settle into a new normal but who knows what it will look like. When we fell in love 30 years ago I didn’t imagine myself, at 56, visiting my husband in a rest home. We always said one day the 18 year age gap would bite, but somehow the reality is different.
He’s made friends with the resthome cat, and it pops in and out of his room regularly. He was tearful when I left tonight but, given it was my first day back after he went in 11 or so days ago, I think that was understandable. Overall, he’s looking much better than he did a few weeks back. With the anxiety of being home alone gone, he looks less frail, although he had another fall t the weekend. I’m sure some people are going to think he doesn’t need to be in a home but they are so, so wrong. Anyway, today was a small step towards a new normal. One step at a time…