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…..