Just realised you’re a carer? Three things it’s good to know now.

Lesson 1  – Don’t be passive in any situation, I don’t care how senior they are or what specialist knowledge they have.

Right off the bat I realised I needed to be the decision maker; I felt that there were some occasions when I thought someone else was the decision maker?  This was never the case, at the bedside in a hospital ward, during some social care meeting or just choosing a hairdresser to come to the house; I realised I had to make all of the decisions. That does not mean I did not include my Mother in these decisions, but it became pretty clear all decisions would have to be made by me.

This is particularly the case in healthcare situations. During my Mother’s last stay in Hospital, which should have been a short one, I quickly realised that the ward staff were unable to make any decisions about my Mother. She was not well enough to go home without a care package and no one could decide how big that would be or who should provide it.  So we kept going round and round in circles with me asking their advice.  I found I had to guard against being passive and learnt how to challenge decisions that were or were not being taken.

Lesson 2-  When someone tells you something check both you and they understand what they are saying.

People called me out to the blue and started chatting about my Mother and her needs. This initially seemed like good news.  On at least two occasions I realised that they were not talking about my Mother, some transposition of phone numbers on a list perhaps.  So when I  got one of these calls I did the following:

  • Asked them to identify themselves
  • Got their contact details –  I always did this first. Get their general contact details to and their specific job title.
  • I recorded all of these interactions into an Evernote Notebook; you can, of course, use a paper notebook
  • I confirmed who they thought they were talking about –  I did this through active questions like; “ You wish to discuss Mavis Coulthard with me who’s on Ward XX at the Royal Surrey Hospital?  Is that correct?
  • I would then confirm who they thought they are talking to.
  • Then and only then would I have the conversation
  • Finally, I would confirm the agreed actions back to the caller.

Lesson 3 – Write it all down and keep your eyes and ears open

Don’t rely on your memory, write everything down how ever trivial it might be.  A mobile phone camera is really good at capturing complex meds and forms.   I found that I was often the only person that had all of the information.  The last hospital discharge letter, a list of the latest meds, the name of the intravenous antibiotic Mum was on.  I found that no one seemed to have the right information at the right time.  More of this in another Post.

Once my Mother was discharged from the Royal Surrey Hospital without any medication.  At the time, she was on about 13 different pills.  Fortunately, I had a photo of her medications and the schedule associated with them.  I was able to send this to a local pharmacy and they were able to sort out the mess with some help from my Mother’s GP. Without that intervention, I guess Mum would have been back in Hospital that night.  The healthcare ombudsman has recently published a report into the discharge of older people from hospital.  It does not make good reading.

I found I needed to be aware of the conversations around me and my Mother, I read all of her medical notes, I asked open-ended questions and listened hard to the answers.  I found it easier and easier to challenge the jargon. The NHS loves jargon, three and four letter acronyms abound and I just asked what they meant.  Sometimes not even the user knew what they stood for.

 

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