Long time no blog. Health updates and health protocol updates will happen asap. I needed to blog about something else first though.
The carers have just left the flat for the night and I am looking around the room doing a quick survey. What have they forgotten this time?
a box of pads left on the table.
the wardrobe where the pads are kept isn’t clipped shut properly (My cat will be trying to get in there in no time)
Tne bedpad (used under the bedpan) is on my dinner table (hygienic)
My headphones are out of my reach
The curtain isn’t shut properly
Carers quite often comment that I have a really good memory – better than in theirs in fact… and it Does. My. Head. In. Why? So many reasons!
The first reason is because I often feel like carers are making no effort whatsoever to remember things because they assume I will tell them what to do including correcting them when they are wrong. This is massively unfair to me and I can’t begin to express how much more difficult this makes my care, and as a result – my life. Carers do two main things; they forget what needs doing leading to doing things incorrectly and/or missing steps, and they ask me what the next step is seemingly without trying to remember that information for themselves. Carers ultimately seem to forget that whilst they are being paid to be here and retain that information (i.e the next few tasks are their job), I on the other hand am unwell and need to save my limited energy for other things (i.e the next few tasks are a basic part of my daily routine). Carers will often look at me frequently and say things like “Now?” after every component of each task. I challenge anyone (in particular those working in the social care sector) to break down their self care tasks in to its tiniest components, and then give instructions out loud as to how you would need to be assisted to complete that task. Every. single. component. I don’t mean: “help me to use the toilet”, I mean:
– open the bathroom door
– close the bathroom door
– lift the toilet seat
– pull my trousers down
– and my pants
– look away/walk out for a minute
– get the toilet paper
– wipe my bum
Now in addition to this, imagine that the person has never worked with you before, or maybe even done the task with anyone before. Suddenly “Wipe my bum please” becomes:
– about three sheets of toilet paper
– When I lean this way you need to reach under and wipe between the bum cheeks front to back.
– then stick it down the toilet
In addition to this, imagine that rather than just using a toilet as usual, you’re actually using a bedpan whilst lying in a very specific position and need to be turned in a specific way to use it. Your various impairments mean that you have to do things a specific way but you also know that small details are important to your comfort – for example, if they take away the bedpan before the cushion that is supporting you, then as you lean forward for them to take it, the cushion will fall behind you and you’ll suddenly have something dense pushing in to you and stopping you from leaning back. At this point it becomes essential for your carers to learn the nuances of your routines, otherwise this constant commentary becomes a full time job; it becomes your life – and in a life that is already limited by pain and fatigue, it is a total nightmare. Of course you wouldn’t expect them to remember this right away, but there should come a point where they do, and it is generally accepted that usually one carer teaches the next.
That’s the main reason why it bothers me when carers try and complement me on my good memory, or laugh about how bad theirs is. They don’t know what is going on inside my head. They don’t know how hard I am working to retain that information. I can’t just relax and do a shit like everyone else can – I have to be thinking: What comes next? What could they have forgotten? What are they doing right now, and is it correct? This, on top of keeping a constant watch on the clock and reminding carers what to do so that we finish on time – because I don’t have enough care hours and the care agency have just told me they are going to be charging me the cost equivalent of half an hour of care, per carer (and I have two carers) if we go so much as 5 minutes over time up until 15 minutes, and the same again for every 15 minutes after that. My care situation is incredibly stressful as a result.
The other reason why I am bothered by carers continually telling me I have a good memory is because in actual fact I don’t. I have two (or more) diagnoses that lead to poor memory problems. The reality is that if I am unable to remember something and remind them that they forgotten somethign, the reality is that they probably won’t find out, and I will just go without (e.g food, meds etc). They remember the order in which they go to the toilet, so why is it considered special that I can remember (most of) mine if I put all of my brain power in to it? Lastly, due to the fact I have impairments that lead to memory issues (and impairments that are frequently not taken seriously by professionals) there is also an amount of internalised ableism that comes in to play whenever someone comments on my ‘amazing’ memory. Essentially my brain starts to question, do I? Maybe my impairments aren’t as profound as I thought? Maybe it’s not real after all. Sadly, whilst not exactly logical, that last one will be all too familiar to many who have ever been disbelieved by professionals involved in their care.
Shit….I’ve just discovered they’ve forgotten the snack I requested – lets hope 100 calories will be enough to get me through the next 12 hours eh? (14.5 if you go from the last time I ate).