It’s just not there

My carer didn’t arrive on Saturday afternoon. I was sat here as always waiting for them to show up and give me my shower, but despite the fact they had promised, that they would be here between 3pm and 4:30, no one arrived. On the days that they aren’t here, I normally have something to eat at 4pm, so that I can take the meds that have to be separate from my night meds. I don’t know the science involved, but the meds that I take to dissolve my gallstones, must be taken at least three hours apart from my calcium, plus it has to be taken at night. On top of that, I have another med, that must be taken with food, so I’m not being picky, it’s just the way it has to be. On the days they are here on time, I can still manage all of this with ease. So I was sat here, tired and fretting about how I was going to manage, as the time ticked by. At 4:45, I asked Adam to phone them and tell them not to come. I don’t get how what is supposed to be a service, one that we pay for, can run in such a haphazard way. They didn’t call us to say they would be late, nor when we called them, did they have anything to say other than they were short staffed, but that still doesn’t excuse any of it.

I often wonder if these care services actually care at all. I don’t mean the actual carers themselves, every single one of them has been great, it is the actual companies that I am talking about. I know business is business, and that they are there to make money, but I keep hearing such mixed reports from people around the country. The one thing that seems to be almost universal, is that they are almost permanently short staffed. All of them are caught in the same trap, people like myself and the elderly, who make up the bulk of their customers, don’t have the money to pay the fees, that would allow them to pay their staff better. In Scotland, if you are over the retirement age, all personal care is free, but of course, the government doesn’t want to pay high fees either. Nearly all carers are paid just the minimum wage, a wage that most British people don’t want to work for. Short staffed is an inevitable state, and it’s only going to get worse, now that we’re leaving the EU. Many may not like the influx of people we have had from Poland and so on, who see our minimum wage as inviting, but without them, well, things will only get worse. I don’t normally get involved in politics in my blog, but this is a situation that is worrying, not just for me, but for millions around the country.

For many people, including myself, not having things happening when they should, is highly disturbing. I know myself, that my frustration levels start to rise once we are past 3:45 and no one is here. Years ago, it wouldn’t have bothered me at all, I would have happily sat here without fretting at all. Life has changed, though, and I can’t handle it at all now. I am more than capable of telling myself to stop being stupid, but it doesn’t work. It doesn’ take long for frustration to turn into stress, and stress to turn into exhaustion and fatigue. When your brain doesn’t work well enough, to bring logic to all parts of it, life is hard, something that is even harder to get through to something like a business. How do you explain to them that their actions are making not just your day difficult, but your health worse? I’m not just talking about the carers here, a company that should fully understand, but all of those companies we have to interact with, ie. like my recent run in with my now ex-internet supplier. Getting it across to people who are not specialist in your health, that you aren’t just being difficult, but things not working properly is impacting your very existence, is almost impossible, especially over the phone. Our conditions are often invisible to those sat in front of us, so how on earth you get someone who can’t even see you to understand, well, for me it has proved almost impossible.

I always knew that life was going to get more and more difficult as time went on, but I never foresaw these problems. Although Adam has taken on the bulk of anything that has to be done on the phone, with him working, there are still some things that I simply have to do. I tell myself, that as an educated adult, I can, of course, handle talking to customer services rep. Not having a functioning brain, is proving to be more of a hassle than I ever expected. It’s not helped at all by the fact that frustration usually turns into tears, tears that I know most people don’t have a clue how to handle. When it’s over the phone, my experience has shown that rather than taking more care and truly trying to help, they instead, just try to get rid of you even faster. If there was one thing in this world, that at this stage of my health, I find myself wishing more and more that I had, it’s a PA. I don’t want them for the company, as I know that their chatter would really get on my nerves, but to have someone here to take on all the tasks that I am finding more and more difficult to manage, would be wonderful.

As an adult, I have never been financially well off, and I’ve never wanted to be, so I find it somewhat bazaar that at the time when my need for money should be at it’s lowest, I suddenly wish that I had some. I guess that eventually, we all will, for if there is one thing that we will all be let down by, is the so-called caring society. The reality that I have discovered is that it simply isn’t really there, not in the way that it is needed, which considering each and every single one of us will call on it eventually, is truly ironic.

 

Please read my blog from 2 years ago today – Know what you think

I knew when I stopped writing yesterday that I had just opened up a topic that I had barely scratched the surface of and that is the truth about the things we fear. I suspect that the majority of people reading this who are healthy will think that my biggest fears must be that of dying, for me that doesn’t…..

15 thoughts on “It’s just not there

  1. Ah, now you are discovering the crappy side of getting carers. We so need them and it’s a universal problem. There is a term in Australia that the NDIS (National Disability Insurance Scheme)will soon see abolished. It’s called Postcode Roulette. Some council areas seem to have more funding, better services than others. I’ve received less services the further out I’ve had to move. I have workers who still have family in the UK and they say you have a worse system there. In the short term, always call them and tell them where they failed. If you can get 3-4 regular carers you can learn from them where the system has failed. Then you can be better prepared even if it’s to manage your expectation.

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    • We have already decided that once we have the financial side sorted out, as we are seeing the person who will be my social worker this week, we are then going to shop around. I have already been told that the service is very different with different companies. Having said that, we are with the same company as the one who cared for Adams Gran, and she was more than happy with them. It’s hard to know, until your inside the system, just what is available and who to go to for help. Only time will tell x

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  2. Having had good and bad experiences of the care system, when Nan was ill, I can honestly say the best ones were those that came from Irelan – they were very caring. The others, both from this country and from other EU countries would leave nan in tears, not follow what was on the plan (even had one who said she didn’t understand what we were asking of her) and were just in too much of a hurry to get on to their next job even though they were down to spend at least an hour with us, we were lucky if we got 10 minutes. The bulk of it mum had to deal with and we made endless calls of complaints. Very often there would be no one turning up, and as we were paying for it we often got a bill at the end of the quarter which we had to argue about. I do know that some councils are better than others when it comes to providing careworkers and the companies that they employ to carry this out, unfortunately where Nan was living was rated as one of the worst! Write everything down is the only thing I can say, and let the care company know when someone hasn’t arrived when they should.

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    • There appears to be a large number of care companies in Glasgow, we are waiting to see the lady who will be my social worker later this week. Once we have the finances sorted out, then we are thinking of shopping around to see whether or not, we can find someone better. You don’t have to stay with the service offered by the council, I think it is worth finding out what is available. As always, it all comes down to money. 😦

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  3. As taxpayers who pay for services, we should expect to be able to use them when we need them. Instead, because our governments are run by right-wing extremists who are cruel and selfish and stingy, we suffer degraded services staffed by increasingly overworked and apathetic people ill-trained to do the jobs they were hired for. This is unacceptable and should result in the level and type of protests still seen in France where governments and businesses find themselves shut down by the crowd until they back down and do as they are told. See, France’s revolution did get one thing right, despite its bloody and chaotic unfolding: it put a healthy fear of public anger into the government that persists to one degree or another to this very day. The American revolution of the 1770s-80s and the English Civil War of the 1650s-60s failed to accomplish this because, I think, they largely shied away from the notion that the government should ever be mindful that it can only go so far when abusing the public, and then there WILL be consequences. We’re beaten down, defeated, unwilling now to even question what our governments do. Now your postal system has been privatized and degraded, and ours isn’t all that far away from meeting the same fate. When will our peoples cease putting up with all this?

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    • Personally, I think our problems go far deeper than government. The day that pupils ceased to respect teachers and children their parents, was the day that everything started falling apart. There is no respect for others any longer, and that is a sorry state for humanity to be in.

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      • It’s a combo of both sides for me, government has purposefully created the system as we have it now for it’s own benefit, at all levels really from childhood on up (could say so much about how our “education” (if you can call what amounts to a brainwashing system that) is fucked up). As such the people are fucked up in so many ways mentally and physically for that. One part begets the other more or less if that makes sense.

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  4. I can definitely relate! It seems that the companies are like any other big corporation; greedy and probably top-heavy (which results in skimping on salary for the lower-level jobs of those who work on the front lines).

    Here in the US it is very often true that the carers have to work 2-3 jobs in order to afford their living expenses. It makes them want to leave this type of work entirely, and if that happens what is to become of the clients who are ill and in need?

    I think that maybe new labor laws might need to be made to prevent companies from just pocketing all their profits when those working aren’t making enough to make this worth it to them to continue doing it.

    I hope the company has rectified the situation so that it won’t happen again. Asking to speak with somebody higher up might straighen things out.

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    • Labor laws in theory sound nice, but can guarantee you any laws passed would just punish the little people more than anything. That’s how most law as we know it is. So for me in that way more laws are really the LAST thing we need, things are fucked up enough already by all the overregulation.

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  5. It’s interesting to read your perspective because where I live is so different. I wish we had some of the options for in home care that you write about, but alas I’m sure our government (and plenty of people) would just muck that up too!

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    • I love reading the different posts from around the world, for just that reason. It has opened my eyes to differences that we don’t expect, or often don’t even think of. If only someone would bring together all the best ideas and best practise globally, that could then be used as the gold standard worldwide. I know that not all countries would be able to take it up, but I would at least hope that it would be an eyeopener and something to aim for.

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  6. When I was awarded disability I was placed on an insurance plan that offered a medical ride service. This seemed like a nifty thing as my wife can’t always drive me to my appointments and we have limited access to friends. The last time I tried to use them, I was told that I’d called at a wrong time, that my driver was just “10 minutes away” at least twice and ultimately had to reschedule my appointment. I’d called and scheduled the ride a month in advance, and I learned too that the company with whom I’d scheduled the ride was outsourcing their clients to other ride services, so I wasn’t even getting the company my insurance provided. I’ve since switched insurance, but the lack of professionalism and the fact that I was exposed to several migraine triggers in the process of getting this sorted out has left me suspicious of any further assistance from outside sources.

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    • That is something that I can fully understand, but for some of us, there isn’t any other choice. I for one have no one, outside of my husband who can help me with anything. It isn’t right for me to put everything onto him, and of course, he is also working. Whether we have other options or not, when you pay for a service, that service should be provided as agreed. Too many companies these days seem to think that the customer doesn’t matter, someone should tell them that without us, they have no company.

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  7. This is really interesting, I’ve worked in the NHS for a while now and I used to work in a place where we organised cares for end of life patients – we worked with a lot of outside care agencies and would often receive complaints around time keeping and sometimes no one turning up at all and I always hated it, I hated that people who relied on carers were mucked about. Some agencies are better than others though. I hope you can shop around and find a better service X

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    • We are just waiting for my personalisation to be completed and we will be looking. It does appear that it is a very common fault and I quite simply don’t understand why they can’t just make a phone call. I wouldn’t have dreamed of acting that way towards anyone, just a call to say your running late, or that there is an problem with that day, would change much. 🙂

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