How life is now

About six months ago I stopped writing weeknotes because I didn’t know what I could or wanted to write about what was happening. My dad had four spells in hospital, and moved to a care home, and then a nursing home, and passed away recently.

During this time I kept notes about what was happening, and this is them, polished into some shape.

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§ I spend too much of my time online, reading blogs, Mastodon, Bluesky, Instagram, Slacks, Discords, watching TikTok, etc. etc. and for better or worse it’s a big part of my life or, at least, the life of my brain if not my body.

I was surprised, back when all this began, with how quickly that all dropped away and became completely unimportant. That parallel virtual world disappeared as I sat in A&E, or in a ward, or at home worrying what the next day would bring. Despite having a lot of time to fill I had no interest in filling it with all that.

Over coming weeks I gradually dipped back in, one thing at a time, until I was back at it as much as before. Probably more, given all the time away from home and lack of desire or need to get stuck into anything more substantial, like work.

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§ As with any disaster, you can know logically that something like this might happen but it still doesn’t prepare you for how much your world completely changes all of a sudden. Priorities are entirely different, plans are canceled, the future is uncertain, worries are constant. Your life is all of a sudden very different.

And that different very quickly becomes normal. This is just how life is now.

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§ I’ve spent more time in the Essex town where I grew up over the past few months than in any period since I last lived here. It’s been the first time I’ve found myself thinking, “I can see why people would choose to live here.” Obviously, I was keen to get away from the small town way back then: “There’s only one good thing about a small town / You know that you want to get out.” It’s still not high on my list of places to live but I can finally see the appeal. Big enough to have essential shops and a few cafes and coffee shops, small enough to feel friendly and personable. A leisure centre, schools, a nice traffic-free riverside walk right through the town, only 45 minutes from London.

Every time I come back here I wonder if I’ll bump into someone I haven’t seen since school, because some must still live here. Then I wonder if I’d recognise them even if I did, 35+ years after I last saw them as teenagers.

While I might have obliviously walked past plenty of them it’s not impossible: one Sunday, walking past a cafe, I recognised DT eating brunch with his daughter and he recognised me. Lovely to say hello after so long. He didn’t offer to give me back the C90 of ZX Spectrum games he’d “borrowed” off me though.

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§ It’s impossible to summarise all the things my sister and I have had to do over the past several months, with one parent in and out of hospital, and moving to a residential home, and the other at home. It’s been a lot. There are always things to keep on top of, to chase, to worry about, to do. I think we’ve done a good job on the whole but we’ve never felt like we’re doing everything possible. You always feel you should be doing more, should be caring more, no matter how much you do or how much you care.

I’m very, very fortunate that my sister and I have thought similarly about things, and been able to work together through all this, and that Mary has been so supportive too. We’ve been able to mostly take it in turns to be in Essex, coordinating everything through WhatsApp, a shared calendar, and many shared Notes.

It would be so, so much more difficult if siblings disagreed about what to do, or were very differently (dis)organised.

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§ I need to emphasise the making of notes. Make notes every day, right from the start. You might think you’ll remember what that nurse just told you, but when you’ve been told half-a-dozen things by different people later the same day, it will have gone. And when you want to look back on when something happened a couple of weeks ago, good luck unless you’ve kept track of everything that happened.

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§ Having to tell someone I love that they might never be going back to the home they’ve lived in for decades is one of the most stressful, worrying, upsetting things that I – we – have had to do. It wasn’t nearly as bad as I feared but afterwards I still felt like I’d somehow failed them.

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§ In hospital it’s surprisingly hard to get an update about how a patient is doing.

If you call the ward you might never get an answer. If you’re there in person – we generally were – you need to at least find a nurse who can read the patient’s chart for you or, ideally, track down the consultant for a quick face-to-face update. This is sometimes impossible, even if you’re there after they’ve done rounds, and aren’t at lunch, and haven’t left for the day. Finding out how a patient is doing feels like something that should be much simpler.

And hospital staff are very, very good at avoiding eye contact. Loitering in the corridor of a ward hoping to find a passing nurse to ask for an update is almost impossible. I can’t blame them – they have plenty to do without asking random lost-looking strangers if they need help – but it’s quite a skill.

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§ It’s amazing how fragmented the various parts of the NHS are. Dad’s GP was generally unaware whether he was in or out of hospital. Referrals get made to different hospital departments or entirely different places and, even for us “young” folk, it’s hard to keep track of which tests, results, and assessments are outstanding.

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§ Like most British people I do not like saying bad things about the NHS. It is, obviously, amazing in so many ways and full of people doing their very best. But my faith has taken a battering.

You might be discharged from hospital with the one thing fixed but in other ways be in much worse shape than before with, it seems, no one really concerned. Discharge papers might be incorrect, or late, or even a different patient’s. You might be discharged with problems so obvious that only days later paramedics shake their heads that you were sent home. Promises of occupational therapy – to offset days then weeks spent in bed – might never be fulfilled. Bedside alarms might go unanswered for ages, even if you’re trying to get help for someone else who’s fallen out of bed. Spaces in homes or half-way recovery places are rare and you might be stuck in hospital for days or more waiting for one. Even then it might be far enough away that it’s next-to-impossible for relatives to visit.

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§ There is no good time to get Covid for the first time and my first time was not a good time. It felt like I was in the very middle of all this drama – at my parents’, after Dad’s first two hospital stays – but in reality it was only a month in. You innocent little Phil. Thankfully I only had a couple of days feeling pretty rough and my parents – presumably protected by vaccines months earlier – suffered less.

It’s really difficult, in 2024, to get a sense of what post-Covid behaviour is normal or correct. Having not had it when the rules were clear and strict, I was keen to do the right thing but figuring out what that was was tricky. Lots of web pages are over two years old and detail restrictions that are no longer in place. The NHS’s current guidance is brief and open to interpretation.

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§ At the start of all this I really tried not to talk to carers, nurses, doctors, etc. about my dad in the third person when he was right there: “He seemed fine until yesterday…” But at some point it just became normal.

But there are limits. Some people – such as a young carer on one of the early hospital stays – talk about old people, right in front of them, in such an infantilising third-person manner: “Awww bless, isn’t he sweet.”

Or there’s the way that some carers patronisingly address an 85-year-old as “Young man”. I feel like such an old grump thinking, “Have some respect!” But really.

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§ There have been many times when I’ve wondered how I can be a fully-grown adult, 53-years-old, and have no idea what the right decision is. I became desperate for the few people who seemed sensible, qualified, and experienced, who could suggest what the best next step was.

I felt so soft. What an easy life I’ve had! People have struggled for much longer through much tougher situations than this but there were many periods when I was constantly mentally exhausted from the worry, uncertainty, indecision, with no end in sight.

It felt like, with all the time I spent at my parents’, thinking about their needs, that who I was began to disappear. People who are caring for loved ones full-time, for years, must really struggle to maintain an identity of their own.

I don’t socialise much with people at the best of times but I had little desire to do so during all this because I had no other thoughts, no response to “Hi, how are you?” other than “Good thanks but my Dad’s been unwell and is in a care home and and…”

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§ I’d given very little thought to residential homes until the past few months.

In the UK there are two kinds: care homes and nursing homes. The latter is for people who need more medical care and they have at least one nurse present round the clock. The former only have carers, with district nurses popping in a couple of times a day to help with things like insulin shots. Sometimes it’s obvious which kind of home someone needs. Other times, especially if conditions are rapidly changing, it’s painfully hard to know what the right choice is.

Looking round homes, trying to choose one for someone else, is, I imagine, a bit like trying to choose a school for your kids. You get shown round by someone trying to sell it to you, and what they’re like greatly affects your overall impression. You wonder if you’ve caught the place at a particularly good or bad moment. You read the regulator’s most recent review of the place, summarised on a sign outside by a single quoted large-print word (“GOOD”). You read random strangers’ reviews and try to work out if they’re useful or not. You weigh up the cost, the travel time, the facilities, the food, the staff, the residents, the activities, the rooms, the general vibes. And it’s still impossible to know what it will actually be like day-to-day, week-by-week.

Are you looking at the right ones? Have you been around enough of them? What if you miss the one that would be ideal?

How much do you think it costs to stay in a care/nursing home? I would have had no idea. We looked at a variety and they ranged from £6,000 to £8,000 per month. If you have less than about £23,000 in savings then the local council should pay some of the fees for you. Until then, you’re paying all of it.

You’ll have to get assessments done of the resident’s care needs and financial situation which – like every single other thing – could take far longer than expected. If you’re lucky enough that you can afford to self-fund you can sign up with a home, have them assess you, and if they say “yes”, wait for a room to come up. Otherwise you may have to wait for the social care system to creak into alignment first. We were fortunate with money and timing, not having to wait long for a space either time.

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§ When I return home, after being in Essex for a couple of weeks or so, the first couple of days feel like being on holiday. No longer being concerned for anyone else’s welfare (no, I don’t have kids). Then I start feeling guilty for doing nothing, and feeling anxious about what’s happening across the country. When Dad was in a home I constantly felt guilty about him being there, and not in his own home, even though it was definitely the least-bad option.

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§ In one of my Dad’s more lucid periods he mentioned how glad he was that they’d sorted out their lasting powers of attorney (LPA) several years ago. Having the ability to make health decisions, and financial decisions, on my parents’ behalf made things much less complicated than they would otherwise have been.

It’s still not quick and simple. On the financial front every bank and utility has its own requirements for proving you’re able to exercise power of attorney over an account and even with an LPA in place it’ll usually take days or weeks before you can actually do anything. I dread to think what a pain it would be without any LPAs.

If you’re getting on a bit (or even if you’re not, really) then get LPAs in place! I should do mine, just in case. And if you have elderly relatives you’ll eventually be responsible for, do everything you can to encourage them, before it’s too late.

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§ I have a pretty simple life but having to figure out someone else’s has made me think about the complexity of mine.

Finances for example – the fewer bank and investment accounts the better. Keep things as simple as possible, both for your own day-to-day ease now, but also for anyone who has to take it over, and for yourself when you get older and you find previously-simple things much more complex.

And websites. Oh, websites. When I’m 85 I do not want to have to be using things like the command line or git to maintain any websites. Or dealing with bugs, or incompatible updates, or hacks, or full disks. Maybe I shouldn’t have any websites. In which case, when does that happen?

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§ On Dad’s third hospital visit, the second time I’d accompanied him to A&E, I felt surprisingly calm. The surroundings were more familiar and I knew there was nothing I could do to affect anything. Being there, paying attention, is the best that I could do and I was doing it. Leave it to the professionals.

The flip-side is sometimes feeling helpless and anxious. Someone you love is in a terrible way and you can do nothing for them.

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§ When you’re visiting a hospital every day you get to know, superficially, other patients in the same room and their visitors.

There’s a shared sympathy and solidarity with the visitors. You’re all doing what you can (not much), all worrying, all putting your trust in the staff, all frequently feeling let down. When other visitors are anxious or angry at broken promises, or shoddy care, or further delays, I felt for them but was also thankful that, this time, it wasn’t me.

I enjoyed saying hello to some of the more awake patients in neighbouring beds and wonder how they are now. Cheery Ken. Pete, opposite, desperate to get home, always keen to tell you what he’d observed about Dad’s care. New Pete, more confused but also chatty, following on in the same bay.

One day cheery Ken told his visitors about a little guy he’d seen boxing in the ward. His relatives were doubtful and laughed it off, until I pointed out the new guy, in the bed opposite, who had arrived with his hands wrapped in big, round white “gloves” – presumably to prevent him pulling out cannulas etc. – whose son had warned staff could get aggressive… Maybe there had been some overnight “boxing” after all.

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§ It surprised me how quiet hospitals are at weekends. I assumed that – illnesses and injuries being what they are – everything ran continually, seven days-a-week. But no, most doctors are off at the weekends and wards run with a minimum of staff. Ailments must remain in a holding pattern for two days and three nights until things start up again on Monday.

It does make wards much quieter and calmer, which is nice, but it’s also frustrating. Little progress will be made. If you weren’t discharged on Friday, it won’t be happening until at least Monday.

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§ It was surprising to find quite a few staff, mainly men, who had no bedside manner at all. I know, many of these are tough, thankless jobs, but, eesh, the way some guys, especially young guys, dealt with 80-something men stuck in bed, was hard to watch.

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§ I had forgotten – reading old notes and putting these words together after the end – what a relief it was at one point to see Dad as his normal self. After ten days or so of struggling in a hospital, to have a normal conversation, to see him smile again.

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§ I imagine most people with living parents have thought a little about them passing away, about their home and their belongings left ownerless.

But I hadn’t prepared myself for the odd feeling of being at my parents’ house and knowing my Dad, still up and about but in a residential home, would never see any of it again. It’s a different sadness. All this stuff, decades of cared-for belongings, trapped here.

And I felt awful that he wasn’t there, sitting in an armchair reading. I felt like it was our fault, that we were preventing him being in his rightful place.

What’s all this for, all this home-making and familiar surroundings and favourite belongings, if you can be pulled away from it all, so suddenly, for the remainder of your life?

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§ I’m not a big crier. Or, maybe, I’ve just been fortunate that I haven’t had too many occasions that have caused me to cry. But I’ve cried a lot this year.

Sometimes it’s big, sad events that predictably cause tears. Other times it’s unexpected little things – me waving “thanks” to a car stopped at a zebra crossing, and the driver waving back. Or:

A photo I didn’t take: In M&S, a small girl, 4 or 5ish, standing before a shop dummy of a boy, exactly her height, wearing shorts and a little denim jacket. She looked at its grey, faceless head, then put a little hand on each of its cheeks and gave it a careful kiss.

Then I think I’ve got over some aspect of all this, having cried about it, and felt fine. I’m done with that sadness. And then out of nowhere, back it comes.

And I found myself wondering, “Will this make me a better actor?” And felt bad for wondering it. Unlike some people in classes I didn’t get too hung up on whether I could cry or not, but it was still a struggle, something to aim for. Have I broken through some emotional barrier that would make it easier to recreate these feelings? We may never know.

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§ Constantly making decisions for someone else is very tiring, no matter whether they’re big – which residential home to choose for them – or small – what size trousers to buy. (I imagine all parents saying, “Duh, yeah.”)

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§ There are some residents in residential homes who are fairly mobile and can get around, maybe with a walking frame, without too much problem. And others who can’t do that at all and – if they get out of bed – always need assistance.

But there are people in between who can get around, but not well, who are liable to fall if not closely assisted, who can be a problem for homes. You can’t watch residents all the time, you can’t force them to stay seated or lying down. I got the sense homes aren’t keen to have people in this in-between state because the situation is bound to end up with a fall, which isn’t good for anyone.

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§ I try not to think too much about what things will be like for us in our 80s or, maybe, 90s, should we get that far, given we have no children to do all this stuff for us.

I’d strongly, strongly encourage anyone to ensure they’re living in an accessible, practical house or flat before they need it. If you’re going to have to move before you can no longer use stairs, for example, do it while you can still cope with the financial, organisational, and emotional stress of moving home. Don’t wait until it gets too difficult. Move and downsize before you need to, if you’re fortunate enough to be able to.

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§ The absurdity of sitting on a train, discussing end-of-life plans, and which life-or-death checkboxes to tick on a form, over WhatsApp messages.

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§ I imagine that in 30 years time, in a hospital ward of 80-somethings, plenty of them will be wearing headphones. Today’s 80-somethings don’t seem to wear them but given their ubiquity with middle-aged-and-younger people now, I assume this behaviour will continue with the cohort as we age.

Which will be great. For one thing it’ll provide a break from the noises of the hospital. For another it’ll mean everyone else doesn’t have to listen to whatever you’re listening to or watching.

By 2054 maybe VR headsets will be common everywhere, but perhaps today’s 50-somethings will never quite get on board with this stuff when it arrives properly. So someone will see us all in our hospital beds and think, “It’s such a shame they only use headphones, it’d be much better if they used VR like younger people, to shut everything out.”

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§ One patient watched daytime TV, loud, all day. Even when his wife was visiting. Having to listen to Homes Under The Hammer or whatever constantly would drive me mad, no matter what my other ailments. I arrived at the hospital one day to see him being wheeled out to a transport to take him elsewhere. I got up to the ward and his now-vacant bed still had its TV blaring out whatever was on that afternoon. Fuck that guy.

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§ These TV screens, at each bed, cycle through various things to entice you to pay for media. One of them is a screen of book covers advertising audiobooks. One of the books advertised to patients is Reasons to Stay Alive.

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§ One difficulty with hospital is that if you’re admitted for a specific thing, that’s the focus. No one there knows what you were like before you came in, so if there’s anything else wrong – e.g. with your cognition or speech – they’re not concerned with it. They don’t see it as a new, potentially fixable problem. They just want to solve the one headline issue, plus anything obvious that can be measured in blood tests etc.

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§ The first day Dad was alert but didn’t recognise me.

The day I said goodbye and thought it might be the last time.

It wasn’t, quite.

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§ In the days after he’d gone I felt unexpectedly calm.

A whole direction for my attention and thoughts and worries had vanished. There was no more planning when to make each day’s visit to the hospital or the home. No more bracing myself for what I’d find. No more having to find someone at the hospital to ask for an update. No more wondering what the coming days, weeks, months and even years would mean for him.

I had an urge to be busy, to sort things out, but even now, over a week later, there’s a limit to what I can do. A new system, introduced in September, means that after a death you wait for a medical examiner to call you to ask if you have any concerns about the person’s care beforehand. Then you wait for the coroner to do their work. Then you can make an appointment to get a death certificate. With that you can get on with a lot of things. We’re not there yet.

I was expecting to feel more upset all the time. Partly, I think, it hasn’t sunk in yet. Maybe it will when I get home. As before, months ago, tears start suddenly, unexpectedly. I can feel all business like, able to get on with tasks at hand, like a phone call: “Hello Derek. I have sad news I’m afraid. A couple of days ago Dad … [sudden sobbing].”

It doesn’t seem real that thoughts like, “I should show this to Dad,” or, “I should tell Dad about that,” or, “Dad would like this,” are pointless now. Conversations that can’t be resumed. “Remember when I mentioned…?” “You know you said…? Well I just read this…”

After a couple of days I realised that hours would go by without me having thought of him. How could I do that?