In this honest and powerful video, the speaker shares what it’s really like to try and get proper care for a vulnerable mother. They talk about how hard it was to get consistent, caring support from home care providers—and how emotionally draining the whole process was.

They open up about being unfairly labelled as “confrontational” simply for speaking up, and how some care providers were defensive and untrustworthy. The video also points out how poorly trained many carers are when it comes to handling sensitive and complex care needs. Throughout, there’s a strong message about how much families end up doing on their own, with very little help from care services.

Transcript

 I find myself having conversations with the social workers of going, this is so wrong. How can the system be set up like this? How can it be so vulnerable? As in how can the people who are using that system be so vulnerable to the whims of, yeah. Of, untrustworthy people.

And also people who seem to speak from a handbook or script about what they’re doing. I was saying it’s like those wi funny little mottoes that people have hanging up. It’s I want the actual, the sincerity. I don’t just want the words, I want the feeling.I want to trust that person actually does give a damn.

When you look at their kind of feedback you can read reviews of the company and you see what their feedback is, and it’s cut and paste kind of stuff. It’s not engage, they don’t engage, basically that’s the problem. And I think that in the situation that I am in, I’m dealing with some people, social services who do engage up to a point, and they really do the social workers. But to be faced with people who not only don’t engage, but who then go on to say, “you are very confrontational” and then they put that into emails. “Emma is very confrontational. Emma is a confrontational person. She’s difficult to deal with,” etc. etc. So there’s a kind of def defamatory aspect to it as well, which is, which I think is a bit like gaslighting.

It’s a bit like going, we don’t want to deal with what we are doing wrong, so we’re gonna make you be doing something wrong, because that’s a lot easier actually. And who is there to say different?

Then it’s my words against theirs and the social worker is not daft, she knows that I’m not like that. She can see from the way that I interact with her, that I am a thoughtful and reasonable person who, but also a person who’s very emotionally vulnerable because of the situation that they’re in. There are all sorts of things to this, but one of them is, it seems to me that the social workers, they have all that training of engaging with human behavior and understanding, how people behave under pressure, etc.. And it seems like the home care companies don’t need any of that training, that it isn’t a prerequisite of taking on that job and yet, you are dealing with fragile people every moment of every day, whether it’s the actual person who’s receiving the care or all of the other people who are around them. And if there is no training to deal with that, they basically just try to shut down any sense of feedback, concerns being raised that they’re incredibly defensive and they just they shut it all down. And so to the point, even when they canceled the care contract and the social worker came back from being off sick, she said, “oh, I just assumed there’d been an argument between you.” but absolutely nothing had happened at all, but because of what’s being drip fed in that way. Even the person who I would say knows me reasonably well is assuming that’s what’s going on. That can make you feel very destabilized actually. And then the other thing is, of course it is not a social worker’s job to look after me.

It’s a social worker’s job to look after my mum. That’s the vulnerable adult that she is responsible for. When, for example, in the past myself and my brother would be saying, please, can’t we have some respite? Please can’t we have some support here but they can’t even support my mom, really so how can they support the family?

And yet without the family, my mom is either in hospital, in a care home or dead. And the social worker, as far as I understand it, has a responsibility to make sure not only that she is cared for, but that she has dignity, that she has agency, that she has a voice, that she she can make choices for herself, etc. etc.

Is your mum able to express the impact on her and whether she feels that’s the case?

My mom is the most polite person also the most generous person in terms of, “oh, be careful,” “don’t do that”, “you might hurt yoursel to everybody”, that  includes all the carers, it includes all of her friends, her family, that she will always be thinking about what’s gonna happen to you and whether you are right in spite of the fact that she’s in this situation.

So my mom would say. The care that she’s receiving. A. she has us doing care for her, which is a bonus. It’s not a bonus to her to have us doing personal care for her, but to have us around eating meals with her, etc., is like really important because it, in terms of quality of life, that’s basically what she’s got.

She would never make a complaint about anybody, and of course what happens is that people, myself and my brother have shielded my mum from the worst of the interactions that we’ve had because she’s got enough to worry about. And she’s incredibly anxious person, so if she gets any whiff that there’s some a problem, she’s like that, she’s just terrified and yeah.

And she’s right to feel vulnerable. She is, because it’s really only. It’s really only myself. A lot of the time I have felt that I am this very kind of stretched bit of thread between her kind of life and death. I think that’s the way that I can put that is that it feels like it wouldn’t take much to just, to, for that to be severed because. It’s a bit like, I dunno, I’m trying to think of it in a, in cartoon terms, but if you imagine if you imagine in cartoons where one of the railway carriages breaks away from the engine and somebody is stretched between the engine and the carriage. You know what I mean?

That sort of, and it happens a lot in cartoons, that kind of ridiculous thing. But that idea about trying to hold two things together, which are much more powerful than you. So yeah. Yeah. Yeah.