Role of Friends and Family

This third blog highlights the things I learnt looking after my Mother during the last few years of her life.

Friends and Family

I thought I was alone in sorting out the increasing complexities of my Mother’s life. Focusing entirely on the needs of my Mother meant that I forgot that she had a loyal and capable group of friends. They had been helping her with all sorts of tasks and running errands for her for years, and I needed to include them in my plans and activities.

Neighbours and their role

Neighbours are as worried as you are. They can often see what you can’t see, the gentle deterioration of Mum’s general health, that fact that she was getting out less and less. I quickly found that neighbours were a great source of information, support and help, I always made sure I dropped in on at least one of them each time I visited Mum. If they had helped in some specific way that week, I might take flowers or a bottle of wine, to thank them for their help. I felt that the key was to reach out early and tell them what was going on.

Is there a Doctor in the Family?

If you’re very lucky, you may have a healthcare professional in your family. I have a relative that had been a GP; he understood ageing and the likely issues my Mother would face. I found that if I carefully noted my Mother’s symptoms and relayed them to him, I could get an understanding of what might be the issue. I cannot tell you why, but when Mum had a urinary tract infection, she would quickly become confused and paranoid. Now some reading this will know the reason, but at no time did any of the healthcare professionals working with us made such a connection. They all seemed too busy and too hurried to encourage our involvement in my Mother’s care. (see my earlier blog about decision making).

Access and Security

On a couple of occasions, someone wanted access to the house. If the key holding neighbour was away, then this could be an issue. I bought a LockMaster key safe and screwed it to the door frame and put my mobile number on it. Then should someone need access I could tell them the code and they could get the key? It meant that neighbours knew they would not have to force entry. Later I learnt that this was a very useful thing, and although no one said it at the time neighbours were worried what would happen if they had to get access quickly, the key safe removed their anxiety.

Top Tips

    • Tell friends and neighbours what is going on as early as possible.
    • Ask neighbours what has been happening, they will be happy to update you.
    • Find someone you can discuss medical issues.
    • Thank neighbours early and often.
    • Use a key safe for house keys.

Three things it’s good to know now

I thought I had prepared pretty well when my Mother went into hospital for the first time after her 90th birthday.   But there were three things I quickly had to get my head around and learn how to deal with them.

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 me made my 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.

In my next Post, I will look at the role of friends and family

 

 

The Death of my Mother

MumIt may seem an odd thing to Blog about the death of one’s Mother but I have learnt so much in the last two years it seems nonsensical to keep the journey to myself. We all miss Mum a great deal.  As a teacher, she knew the power of knowledge and the empowerment it brought.

Today, in London there are more than 250,000 people in the last five years of their life. In the UK, there are now 11.4 million people aged 65.   There are over 23.2 million people aged 50 years and over, over a third of the total UK population.   The number of people aged 65+ is projected to rise by over 40 per cent in the next 17 years to over 16 million. And most worrying of all, like my Mother, 3.5 million 65+ live alone.

Unless we do something, we are condemning generations of older people to a chaotic and unhappy last few of life. We can all do better!  This is not about service redesign, apps or productivity this is about happiness. So over the next few weeks, I intend to focus on some of the lessons I learnt.

My Mother died just after Christmas 2015; she was 90. She had survived three bouts of cancer, two knee replacements, World War 2 and a career as a teacher.  She was a pillar in her village community, helping the young ones, all in their 70s, access services. In the last few years of her life, she found it harder and harder to make sense of the services she needed. This was not because she was confused, it was mainly the lack of coordination between the service providers.   These providers were public sector, commercial, charity and church organisations. We had to coordinate and manage all of these services, visits and appointments.

So these are the lessons:

  • The five things you should know now
  • Engaging with friends and family
  • Finding Support
  • Allowances
  • Coordination of Services
  • Role of local NHS and Social Services
  • Hospitalisation and Blue Lights
  • Mini Mental Health Assessment
  • The chaos at the heart of the NHS
  • Access and Control

Pimp your podcast listening.

Over the last month, I have pimped by mobile phone podcast experience. Having used a fruit based product as my mobile for some years, I was happy to see the native Podcast app arrive with a recent upgrade. It has the advantage of being free (never underestimate the power of free in any marketing plan).

But I now prefer the heterogeneous world Android, so I have spent some time choosing an App. The best review I could find was on The Verge  so my choice is Shift Jelly’s Pocket Cast. If you don’t want to pay for an App then I think Stitcher is the best option. Now it’s just a matter of which casts? Here is my somewhat eclectic list:

From the BBChttp://www.bbc.co.uk/podcasts/radio

  • In Our Time – has an extra bit on the end
  • Thinking Allowed
  • The Media Show
  • Front Row
  • Kermode & Mayo’s Film review – much more than just a repeat of the radio show

From The Economisthttp://www.economist.com/audio-edition

  • Editor’s Picks

From Penguinhttps://www.penguin.co.uk/articles/book-talk/

  • Penguin Podcast with Richard E Grant

Independent –  http://www.stitcher.com/stitcher-list/all-podcasts-top-shows

  • The Journal by Kevin Rose
  • The Pen Addict
  • Cortex

Complaining about the NHS where will it lead?

When did the NHS decide that threats were better motivators than simple clear encouragement? I have blogged before about the NHS being a marketing-free zone. But recently the messages to the public and patients have become shriller.

Newspapers have been reporting patients barred from primary care practices for complaining. Banned for not using GP services and of course, there are the posters that state in intolerant terms the fate that anyone abusing verbally or otherwise members of staff.

When I see these posters I always wonder what must have happened to tip people over the edge that they would abuse staff, alcohol and drugs are obvious candidates, but perhaps there are other reasons like long waiting times for fearful and vulnerable people. These frustrations may trigger the fight or flight reaction in some leading to a clash. I am not saying that any of these actions by the public and patients should be tolerated against NHS staff, I merely wonder if the NHS is avoiding some issues. It is easier to blame the public then address the underlying issues.

So what do people actually complain about. When I was Director of Customer Relations for NHS England I conducted the first ever research, using the Polecat digital tools, into Feedback on NHS Choices. The results were surprising. Two main themes dominated the feedback, Communications and Professionalism, these 2 segments accounted for 80% of the feedback. The remaining 20% was a long tail of feedback on food (a British obsession), cleaning services, queuing (another obsession) and car parking.

These 2 major segments need unpacking a little:

Communications – the feedback here can refer to poor signage, complicated and repeatedly poorly written communications, late cancellations and even notification of appointments arriving after the date of the appointment

Professionalism – this seems to be a euphemism for rudeness of any type, but it can include incompetence in the eyes of the patient, cultural challenges, just being ignored and a poor bedside manner.

It is likely as Generation X and the Millennial generation show up we will see a more critical and detailed feedback. The challenge for the NHS is to embrace it rather than banning it.