Over the weekend I’ve been talking with Penny about food addiction again … it’s a complicated thing. An alcoholic can potentially avoid alcohol for the rest so their lives, a nicotine addict doesn’t have to smoke a cigarette ever again. A food addiction faces their addiction multiples time a day. Is it hard? Yes. Do we always succeed? No! But we’re not giving up either…
The other pain is my knee. I’ve got really good movement, and a scan on Friday showed there’s no clot in my calf. That’s great news, but does mean we still don’t know why it’s so tight and sore. Last night I slept with only one pillow knee to ankle instead of two. I slept ok but my hip’s been uncomfortable today. I think I can persist with just the one though and let the muscles adjust.
For me, with pain comes art. Actually, art comes with most things; pain, joy, sadness, anger, love and so on. This weekend I made a Teesha Moore inspired journal, starting with a large sheet of Fabriano Artistico paper that I cut, folded and stitched. Not quite my usual style, but a lot of fun.
I finally had my second total knee replacement last Thursday, and I am incredibly grateful. The anaesthetist decided he wanted to do a general, not a spinal block, for various reasons. He was right – I’m definitely not good surgery material. His decision probably avoided life support again…
The surgery went well, and I was up that afternoon. The surgeon was happy for me to go home after 2 nights but I chose to stay 3 because we’re 90 minutes away if things go wrong. I was able to get a 90 percent bend day one, which he said he hadn’t seen before. Day 2 the physio said I had in the top 10% of movement. So we should be looking at an excellent result.
As with the last one, my hip is causing me a lot of pain and keeping me awake at night. I think it’s just that I’m standing so differently. As Sandra said, I’m taller already! She’s been a star, looking after me but not fussing. If she hears a crash, she doesn’t come running, she checks on the swearing level and yells out to ask if I’m ok. Very sensible.
The initial bruising is coming out quickly, which is a good sign. Obviously the deeper bruises will come out for weeks. Yesterday and today Sandra has dropped me off at Te Mahana and I’ve spent a couple of hours with Tony; it’s good to do a few laps of their halls. Onward and upward, in a few months the pain will be a distant memory.
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.
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.