Wondering why I bothered 🤷🏻‍♀️

I posted this meme on Instagram on Wednesday – after I’d  been to to see Mum. It should really have said “stuck between try harder and why did I bother”. I had cried al the way home in the car (probably not ideal when you’re negotiating the M8). The tears were partly from sadness at seeing her deterioration and her obvious depression at where she’s found herself. But mostly they were from utter frustration!

Potted history for anyone who doesn’t know

I was a nurse, then I was a care home manager in assorted homes across Scotland, then I was away from care altogether for a couple of years and then I was a deputy manager in a home and then back to being a manager for a few years. Then, in 2001, they invented the Care Commission (I can claim a tiny bit of credit for the start of that process – but that’s a story for another day) and the home I was managing had its first few visits from the inspectors. And I thought “I could do that”. So I did. From 2003, for 12 years. And I loved it (mostly). I had some amazing colleagues and we visited services and applied guidance and regulations and national care standards and found some stuff that would make your hair stand on end. I even (irony of ironies) spent time in a team that investigated complaints – where I encouraged families to tell us about their concerns. And I really thought we were making a difference. At the time I was leaving, a few years ago, the way regulation was being carried out was changing (in ways I generally didn’t much like). It was becoming ‘lighter touch’, there were boxes to be ticked and not all the quality elements were being looked at at every inspection. My colleagues were being micro-managed in a way that deskilled everyone – it seemed to be an emphasis of quantity, not quality. But I left and, apart from occasional chats with old workmates, I was out of the loop for a while.

Fast forward to 2019.

When I was looking at inspection reports before Mum went into care, it seemed like some homes had had very minimal inspections for several years. And I had little experience of the west of Scotland, so didn’t know any of their history.

But, since Mum went into her care home in July (is it really only 3 months?) I’ve been more than a little dismayed by some of the things I’ve seen. I regularly see moving and handling moves that were deemed unsafe in 1997 (after I spoke to one of the nurses about it, this still happens until they notice I’m in the room, so I’m guessing they were told it was me who complained).

Although there are a few smaller rooms, most of the time most of the residents are in one big noisy lounge. Not quite sitting round the walls, but not far off it. Add visitors to the mix and it feels chaotic.

Staff are always either flying around looking very busy or standing in a group at the area where food is served,  talking to each other, but not doing much talking to the people they looking after – except when they are doing some physical caring.  When I approach them to ask anything it feels like an intrusion. Don’t get me wrong – the care staff are (mostly) lovely people. and Mum has repeatedly told me they are kind to her. But there seems to be a huge disconnect between the care staff and the nurses/managers. And whatever guidance and supervision they are having isn’t leading them in much of a good direction.

Yesterday the activity coordinator was in one of the dining rooms, giving some residents a manicure, which I thought was lovely,. She doesn’t seem to get much help from other staff and does seem to be trying to give residents time and get them interested in things. But then I saw she had water and a disposable razor on the table – and was shaving ladies’ chins as part of the ‘pampering’. This was in a public area with visitors sitting around.

Lack of dignity was also an issue when I was visiting one Sunday and all the residents in the lounge were being weighed – and their weights publicly announced to the person filling in the charts.

At her first review, we were promised that, now Mum was going to be a permanent resident, she would have a full care plan (apparently people on respite don’t get one of those – even after weeks). That was in August and I’ve heard nothing since. None of us (Dad, my sister or I) have been asked to contribute or suggest anything – so Mum has basically adjusted to their routine, regardless of her preferences.

But I wonder what is the point of a care plan when the people doing the actual caring for Mum never seem to know what one is – let alone what’s in them. If I ask them about Mum’s care plan they shrug their shoulders and say “that’s the nurses that do those”. I was told last week that Mum had been allocated her named nurse and a key worker. But when I mentioned it to the staff concerned they hadn’t been told. And, anyway, I get the impression that these are in name only and nobody really bothers about them – “just speak to whoever on duty”. So I do –  to ask how much she’s eating or what her sleep’s like (because she seems to be asleep all day) but nobody knows the answers. I’ve spoken to nurses, I even made an appointment and had a chat with the Manager. But nothing has changed.

I feel like I’m bashing my head off a wall. On Wednesday I was told that Mums skin had got “a bit sore”, so they’ve put an airflow mattress on her bed. Considering she’s lost huge amounts of weight, and that I had told them weeks ago that her skin was vulnerable, I had hoped they would have taken preventive measures. But it appears not. And with no care plan to look at, I have no idea what else they’re doing.

In her original room, Mum had a monitor on her bed – to alert staff if she got out of bed. A few weeks ago she moved to a brighter room and in the move the monitor has disappeared. Do I assume that’s because she had never got up during the night, so they decided she wasn’t at risk? Or has it been an oversight? She is very frail and unsteady on her feet and her room has no carpet – just a hard floor. In the absence of a care plan, or someone to ask who actually knows what’s going on, I have to draw my own conclusions.

I could say more – this is just the top of the iceberg, but I would end up writing for days.

The deputy manager (who was allegedly to be Mum’s named nurse) looks at me as if I have horns. I told them I was a nurse, but I have no idea if they know my connection to the Inspectorate – I did have some experience with the homes in my area who are owned by the same service provider – but either way they are clearly not used to people asking questions. I went to the nurses station on Wednesday and asked again about a care plan – and got blank stares and, eventually, a vague invitation to speak to whoever is on duty ‘next time I’m in’. It seems that, in spite of my best efforts, I have turned into the home’s resident ‘daughter from hell’.

Mum’s dementia is so advanced now (and her general awareness of and dismay about what’s happened to her hasn’t helped) that all they can really do is keep her comfortable. And that’s all I want – I’m not expecting miracles. But if I was Mum, I’d be shutting my eyes to it all as well. And now I genuinely understand why people were so reluctant to make formal complaints to the Inspectorate. The response I’ve had since I spoke up about the moving and handling issues would put anyone off saying anything ever again.

My colleagues and I worked our backsides off for years (and a lot of the people I worked with are still there). Why did we bother? Why did we go into homes at all hours of the day or in the middle of the night. Why did we signpost homes to good practise and use enforcement action in extreme situations. Why did we spend days in a state of chronic dehydration (no time to stop for a teabreak) and hunger (lunch – no chance). We could never claim for overtime – we got to take ‘time-back’. I guarantee none of us ever took back a fraction of what we were owed.

For all the difference it’s made to Mum, we might not have bothered?

After 17 years of regulation, none of the services can claim ignorance of what is good practice. But after 17 years, you’d think that the Care Inspectorate (nee Care Commission) would have made more of a difference than this.

So on Wednesday I drove home in tears. Not because I think they’re being deliberately horrible to mum – I absolutely don’t. But from complete frustration and a feeling that I wasted 12 years of my working life.