Weekly roundup

Jaysus, I’ve had a week of it. Grab a brew and get comfy – it’s going to be a long one!

My Mum has been very unwell with raging diarrhoea for months. She’s lost so much weight there is nothing to her, so she is having various investigations under the 2 week cancer rule. When I spoke to the consultant a couple of weeks ago he wanted her to have a colonoscopy, but I explained that as she’s in stage 4 CKD (chronic kidney disease) her kidneys couldn’t cope with the bowel prep which is brutal for a healthy person let alone an 80 year old with severe COPD, heart and kidney failure. So he arranged for her to have a CT scan of her colon instead.

She was sent 2 little bottles of barium to drink to help the imaging, which the instruction book said might have a “mild laxative effect”. They were having a fucking laugh. My Mum, who is really poorly, can hardly walk and who had been shit off the plant for weeks, had diarrhoea so badly after drinking the barium that she collapsed on the bathroom floor. She also didn’t have a wink of sleep the night before the scan as she was never off the loo. I am still livid that she was put through that.

Monday, the day of the scan, we had to be at the city hospital for 9.30am. Although I’m usually awake at 6am I don’t actually get up until at least 9am because it takes that long for my body to unlock itself and to even think about producing any energy, so to have to be up, breakfasted, dressed, in town to collect Mum, wheelchair placed in my car and then through in the city for 9.15am was a killer not least because it was -3C outside.

I haven’t been in a hospital for a year. When my Dad had his hip replacement done in November I had to drop him off at the door where a porter took him to the ward. My local hospital however, which performs so badly it’s been in special measures for the past 5 years, has no such killer-virus infection qualms and just lets anybody wander in. It was a bit like being in a film, though, as everyone was wearing masks and scrubs and the CT staff were in full respirator kit. I sat in the waiting room, wondering how long I could last without breathing. Turns out less than 2 minutes, not the 2 hours I was in the germ-riddled building.

Alongside the diarrhoea, Mum’s been having huge difficulties breathing the second she does anything. The letter from the consultant said she was to have an abdominal/chest CT scan, but on Monday we were only down to have a scan of her colon. So I’d rung the GP beforehand, who’d written to the hospital to say she needed to have at least a chest x-ray (why the fuck didn’t he ask for a scan, as she was already going in the sodding scanner and x-rays are shit for showing cancers?”) and explaining that we would already be there on Monday morning. But nothing had been arranged had it? No. Because that would be too shagging easy.

So I ask the receptionist if she can have her chest scanned at the same time as her bowel and she says “sorry, no can do. We can only scan what we’ve been ordered to” which is fair enough, but bless her she did arrange for Mum to have a chest x-ray, even though it hadn’t been booked.

Mum was so ill on the way home she had to puke into a carrier bag. A combination of already being poorly for weeks, no food for days, 24 hours of never being off the loo, having had a tube up her arse and pumped full of gas, travel sickness from being in the car and no sleep. Bare in mind she’s 80 years old and already frail.

So we get home around 12.30am, I have some dinner, then my Dad and I have to start dismantling Mum’s bedroom because the decorator was coming the next morning.

Mum’s been wanting three rooms decorated in their apartment for the past year, only Covid has scuppered everything. Now she and Dad have had their vaccines she was determined to get the work done. I tried my best to talk her out of having non-essential shite done during a killer pandemic, especially as she’s so unwell, but she was adamant. To be fair I think she just needed something to focus on to get her through, the only flaw being it wasn’t her or my confused.com Dad who had to organise everything – it was me.

So I got the bedroom emptied and as much of the bathroom emptied as I could bearing in mind essentials had to be left to be used. The other room which was being decorated was the kitchen, so again I emptied as much as I could and told my Dad he’d have to move the rest (kettle, tea cannisters, toaster, microwave etc.) when the painter was ready to do in there. I’d arranged for a new carpet to be fitted in the bedroom on Thursday morning (all done via Facebook as the carpet shop is shut because of lockdown) so left a note for the decorator explaining he’d have to do the bedroom first so that it would be dry. I also left instructions on colours and paint types for each room. The bedroom was to be pale duck-egg blue, matched to the new curtains I’d bought.

Tuesday morning we wake to find an inch of snow. The decorator, however, lives on the top of a mountain and was blocked in and couldn’t come. FFS.

I spend the day searching online for various disability aids. My Mum is very unsteady on her feet after contracting Guillain-Barre Syndrome two years ago and has recently had several falls, including in the shower and out of bed. So I need a walker, bed rails and a fall alarm. There are hundreds to choose from and each has pros and cons, but eventually I decide on what I need and place my orders.

Wednesday I was giving a talk in the evening to a camera club in Bristol which had been booked for months, so needed to practice that and have plenty of rest as I have very little energy at night. The decorator turned up at 9am and Dad told him they wanted duck-egg blue for the bedroom. “What shade of duck-egg?” asks the decorator to which my Dad shrugs and doesn’t even bother to show him the new curtains. When I quiz him later, Dad says “well I thought duck-egg blue was one colour – how did I know there were different shades?”. So I ask Mum why she hadn’t intervened and she said “I felt so ill I couldn’t cope with talking to the decorator”, despite the fact she’s the one who demanded the decorating was done. FFS. Again. So the colour the decorator chose was much darker than anyone wanted, but it’s going to have to do.

I was so stressed and tired by Wednesday afternoon that I started with a migraine. By the time I was due to give my talk at 7.30pm my brain felt like it was being eaten by rats. However, I had to just get on with it and thankfully managed to get through without making a total arse of myself. Go me!

The carpet fitters turn up Thursday morning and lay the carpet. I go through Thursday lunchtime to see how things were going and discover a huge bulge in the carpet which is a trip hazard for my Mum, so I have to ring the carpet shop and tell the fitters to get their backside back and fix it. Why does no-one do a proper fucking job anymore?!! It’s not like you couldn’t see the bulge in the carpet – even my Dad pointed it out and he doesn’t notice anything!

I find the decorator painting the walls in the kitchen. My Dad, though, has not moved a single thing out of the room so he’s having to work in amongst the fruit bowl, the kettle, the tea canisters, the microwave, the toaster, the bread board and just about everything else. To add insult to injury, the decorator has not used any dust sheets. He hasn’t covered the kitchen cabinets, the black floor tiles, nor anything else and I can see a mile off that everything is splattered with pale blue paint. FFS do I have to do every little thing myself?!

The bedroom is just about finished, so I start wiping everything down, put up the curtains and wash all the ornaments etc before putting them back. The so-called professional decorator has not used dust sheets over the white wardrobes in there either, so they are splattered with duck egg blue paint. He’s also not removed or taped the sockets or light switches, the edges of which are also covered in paint. I’ve never seen such sloppy, badly finished work from a trades-man in my entire life and if he wasn’t almost finished I would have sacked him on the spot. It takes me twice as long to put the bedroom straight than it should have due to all the cleaning I have to do.

The decorator finally goes at 4pm, I make my parents a hot drink, then start cleaning the kitchen ready to put everything back. It takes forever due to the cabinets, sockets, light switch and floor being covered in paint and I am literally on my knees with pain and exhaustion.

I go straight to sleep that night but wake at 2am with a migraine which steadily builds in intensity until come 5am I want to chop my noggin off with an axe. I don’t get any more sleep and by 6am Friday morning I’m feeling sick to the pit of my stomach. I can’t face breakfast.

The decorator turns up at 9am to finish off the glossing. Mum also has to be taken back to the hospital that day to have an endoscopy, which thankfully is in the afternoon by which time my migraine, having slapped ibuleve gel and a heat pad on my neck, a cold gel strip on my forehead and having taken 5 lots of infant ibuprofen suspension, is down to a dull roar. I’d told the consultant that the last time Mum tried to have an endoscopy done her oxygen levels dropped so low they had to stop the procedure, but he booked one anyway. What do I know, I’m just the fucking care-giver.

I drop Mum off at the endoscopy unit, and am told it will take around an hour. I opt to wait in the car rather than the hospital due to the Covid risk, though after 45 minutes I have to go back inside as I’m hypothermic and desperate for a pee. It’s impossible to visit the public loos for a piddle without touching anything, so I go through 3 pairs of disposable gloves – I’m not washing my hands as the tap handles are riddled with germs. I wait another 20 minutes before the nurse rings me to say Mum is ready for collection, but then tells me they were unsuccessful at doing the procedure and she has booked Mum in for another attempt in 4 weeks time. Why 4 weeks?! And what happens if they still can’t do it? I’m so bloody exhausted by this stage, however, I just can’t argue.

We get home at 5.20pm. I’m usually in bed at 4pm because my energy runs out, but despite having virtually no sleep the night before, and still with a lingering migraine, I get my parents settled with a shepherd’s pie for their tea then start getting the paint off all the appliances in the kitchen and putting them back.

At 6.15pm I go through to the lounge. We’d put Mum’s bed in there while her bedroom was decorated, and although we’d replaced the bed back in the bedroom the lounge furniture was still in disarray. So I start to shove the chairs and sofa back where they belong when my Mum pipes up “actually, I’d like a change. I’ve always wanted the table under the window and the sofa over there (she points to the other side of the room)”. Is she having a fucking laugh?! I’ve had no sleep, a migraine, driven her to the city and back, cooked tea, cleaned the fucking house and now she wants me to re-arrange the goddamn furniture?!!!

Only 4 months ago she had me re-arranging the lounge furniture as outlined in this post. It involved dealing with loads of electric cables, which had previously been on their own socket on the wall. Now she’s telling me she wants her chair back to where it originally was, so I’ll have to re-do all the cables back to the original socket. I want to fucking strangle her with my bare hands. Not only that, but I know she’s going to hate having the dining table under the window and in 2 months time she’ll be getting me to move it back again. It’s been where it is for the last 30 years because it’s the best place for it! My face must have said it all as I start shoving. I really am too exhausted, though, to deal with the cables so tell her they will have to wait til I’m there on Monday. I finally get home at 7pm and feel so sick I can’t face any tea. I should have a bath otherwise I’ll be tortured by pain all night, but I’m way too knackered.

Nothing has got done in my own house all week as I’ve not had the time or energy so, even though I am desperate to spend all weekend in my pjs in bed, Saturday morning I have to start doing laundry, stacking the dishwasher with 3 day old dirty pots and wondering if I can sleep in my bed for another night with sheets that haven’t been changed in a fortnight. I also need to take the dog out, as the dog walker doesn’t come on the weekend. I have 120 unread emails in my inbox and need to get the paperwork for my next photographic distinction, which I’ve been working on for 2 months, in tomorrow or I’ll miss the deadline.

Whichever way you look at it, it’s been a tough week which has significantly and negatively impacted my own health. I’ve told my parents not to ask me to do another fucking thing all year, not that they’ll listen. Next week it’ll be some new crisis and I still have a court case to get through with TalkTalk to sort their telephone line out.

I was having a chat to my bestie on Saturday and as we are both child-less we were talking about who is going to do all this stuff for us when we are old. Illness and infirmity comes to all of us, even if we think it never will, and knowing how little my parents can now do for themselves is sobering……….and terrifying. If it weren’t for me I genuinely have no clue how my Mum and Dad would cope, and I have no idea how I will manage when I am their age. Here’s a little poem I wrote, inspired by a verse written by author unknown.

10 thoughts on “Weekly roundup

  1. Jan Groh

    Uhm, whoa! I can’t believe you can even string two sentences together after all that!! And your poor mom!! What a trooper! (Both of you.) She’s sure lucky to have you. I know I know – who else would do it. Well, sometimes no one, as too many could tell us I’m sure. So.. again, lucky to have you. Just… wow. That was a lot to handle in a short time in your condition. (I’m tired just reading it!)
    PS I did not know there was more than one shade of duck egg blue either! 😉

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  2. Elaine Stammers

    Well, after reading your story and your poem Jak, I have tears streaming down my face. I have often been in awe of what you do for your parents despite being ill yourself, and when you had spoken of your mum’s illness/tests, and the decorator coming, had wondered how the heck all that was possible for you to support. Some of the parts of the week’s story were so familiar re the total incompetence of other people you wonder how they can keep their jobs, when you have such high standards for yourself! I don’t know how you do it – well I do of course, at risk of causing yourself more damage each day because you know that there is no one else out there to pick up the tab.

    I had climbed out of bed this morning thinking some of those thoughts expressed so well in your poem for myself as I am only 68 but have begun to struggle after a bout of Covid that left me with some issues Post Covid that I found a bit frightening this week. On top of that, a boiler that has not worked properly for 2 weeks since it was serviced and passed as in good order!! And a company who are slow to replace it, (apparently some of the engineers are doing child care at this time, and maybe some others are having to isolate), leaving me with water dripping out of it, a now defunct boiler and from yesterday no heating from the system, and effectively no water at times as I have to turn it off to stop the flood, and a temperature of 16 in the sitting room when I got up this morning. Thankfully a kind neighbour has lent me an oil radiator so it’s gone up to 18 as I write, and I have a fan heater for another room!

    Apart from the ongoing saga of the boiler, I too had a bit of a week from hell (friend died of Covid, son with mental health issues rang me with a crisis, the Post Covid worrying symptoms developed), but essentially I only had myself to look after. The care system is horribly broken in the UK and repeated Governments have avoided doing anything about it. There seems to be compassion fatigue in the NHS due to exhaustion no doubt. I spent 2 days waiting just for a phone call back to discuss my ‘worrying symptoms’. I probably won’t bother next time….

    It is not long since my own mother died at 97 and she was caring for my dad when he had a stroke in their 80s. Now I have more respect and wondering how she coped for the year as he deteriorated and then lived alone until she died. I was far away and could only visit occasionally and speak on the phone, and for years my brother visited once a week, and in her later years did more, but I believe was verbally abusive to her reducing her to depression at times and pouring it all out to me when she was in her late 90s. So we then wonder of course – who will care for us when we get to this stage? In my own case I do have 3 sons but they are far away so it won’t be them, and essentially it won’t be anyone as far as I can see. A frightening thought really.

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