My superhero memory. AKA How carers relying on me to tell them every detail of what they need to do is pretty much a full time job

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

etc
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

etc

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).

Advertisements

3 thoughts on “My superhero memory. AKA How carers relying on me to tell them every detail of what they need to do is pretty much a full time job

  1. Great blog. While not as sick as you, I need homecare help and have similar issues. I do tell them that it takes a lot of my day’s energy if I have to explain things to them, but not all get that. One thing I’ve done is written out many of the things that need to be done. Even with that – things get forgotten, or only partially done. I’m now wondering about getting one of those clear sheets that you can write on with erasable markers and having tick boxes beside each point. Then they could have it on a clipboard, read the info for each point, and only check it off after done correctly.

    I also try to make notes for when someone forgets to make food or something key so that I can tell them the next time. And if there’s someone who’s slow, I have an alarm clock to go off 5 minutes before time to leave to make sure all gets finished on time.

    Like

  2. I have a similar problem and it infuriates me. I’m my carers only regular job, aside from me she does fill in work with other clients of the agency in emergencies. I’m the only person whose routine she has to remember. It’s no different from any other job in which people have to remember the list of tasks they’re expected to do and the details of how to do them. It’s often harder for me to have the brainpower to explain details than it is to try to do it myself in terms of later impact so it really bothers me. I can often barely remain awake between care visits because explaining (and her constant attempts to make conversation however worn out I am and how little I respond) consumes all my energy and it’s exhausting.

    Like

    • My problems have changed over time so my ability to speak has improved but is still tiring I do make a little conversation and that is fine for me but the instructing is the exhausting thing. What usually happens to me is that I get q burst of adrenaline due to the stress and excess energy user and that means I can’t sleep or rest and have not been resting properly for the last few weeks.

      Carer is currently in the kitchen. I asked for cup of tea and ready meal but she has wasted time making salad I didn’t ask for. She has come back in again to ask if she should microwave the ready meal for 15 minutes, and I pointed out for the second time that she should follow the instructions. All of this took place with my earpluga still in because she is supposed to close the window When she arrives. Something just happened which has driven me up the wall but I am going to write it in my incidents log before posting here. I still don’t have my 3 minutes ready meal and she has been here 20 minutes.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s