Technology for living

Last week I attended the National Children and Adult Services Conference #NCASC in Eastbourne – I’ll blog about the session I ran later this week, but one of the things that struck me as a theme throughout the conference was the simple things that we could do to make people’s lives easier. I attended a session by Staffordshire County Council talking about some of their new approaches to providing support for people to live independently. It was a good session, I enjoyed the format – using short video clips to myth bust people’s assumptions. That said the thing I took away was the story of the automatic pill dispenser and the impact it had on one of the presenter’s (Emily I think?) grandparents – not high tech, not wifi enabled or encrypted or multidisciplinary, just plain and simple battery operated brilliance.

There were a handful of people who use services at the conference offering their perspective and not too surprisingly none of them were too fussed where their support came from, whether it was health or social care, but they all wanted to live as independently as possible. While I was at #NCASC my Dad was staying in our local hospice, he is terminally ill with bile duct cancer and had been admitted the week before I went away. One of the hardest things to witness is the impact that Dad’s illness has had on his and mum’s independence. I completely related to the story of the pill dispenser and the simple positive impact it could have.

So today I’m celebrating another technological break through…a baby monitor.

This nifty little device allows Dad to be in bed upstairs and whoever is looking out for him to carry on as usual elsewhere in the house – and yet to be tested but hopefully in the garden or next door with Gran.  Mum bought the monitor from Boots this afternoon and Dad was quick to road test it and request a cuppa tea from me earlier, complete with sarcastic comment about whether I’d gone to India to pick the tea when it wasn’t delivered quick enough. He also massively enjoyed making animal noises and scaring the life out of my Mum when she came home – it was one of the first times in a while I’ve heard him laugh, so it was worth it just for that.

It will also be interesting to see whether it allows Mum to sleep easier tonight knowing that she doesn’t need to be listening out for Dad. That said we’ll only truly tell with time, I’m staying at the folks tonight (my brother was there last night) but I’m keen to only stay one night if I can help it…so hopefully the monitor will make that a little easier. We’ll see. Next time I’ll discuss the power of Skype and/or the wifi picture frame, but for now all credit to the baby monitor!

A carer’s skill set

I was going to write a post about my Mum for carer’s week but found this one that I wrote last year so thought the general introduction to how amazing she is, was already done. So then I wondered what would be most useful and thought I’d reflect on the #swscmedia discussion on twitter the other night. I thought I’d focus on identity and skills of being a carer, as I observe in my Mum. If I had more time, and she was less busy, I’d have sat down and discussed this with her more fully to check I was being balanced, but given the pressure we are both under at the moment I didn’t get around to that, so big fat disclaimer – this is my view, of my Mum. Therefore it might not represent her own experience.

A small bit of context, my Mum lives with my Dad (who is terminally ill with cancer) and they both live next door to my grandparents who are in their 90s. She took early retirement five years ago and has been a full time carer on or off ever since.

What follows is a list of the roles she regularly performs as a carer, and the primary skills that she either needs and/or demonstrates in that. They’re in no particular order:

Provides company and social support – communication skills, empathy, recognition

Dispenses medication (about five times a day) – logistics and planning, time keeping, the handing the pills over is the easy bit

Transport to the doctors/hospital – chauffeuring/taxi driving, diary management, social/moral support

Accompanying into doctors/hospital appointments – logistics (often hard because most appointments run late, which is a nightmare if you have an appointment later that date, or with another family member) note taker, facilitator, advocate,  debater and synthesiser

Follow up appointment maker – diary management, logistics, note taker

General health monitor - this means reminding my Dad to take his obs regularly, noting down the results, UN ambassador grade persuasion skills when it is clear that something is wrong and medical help is needed, advocate and general social support

Emergency admissions to hospital – decision maker, logistics, communicator (and increasingly she finds it hard, Dad has had to be admitted by ambulance three times recently, on every occasion he has been admitted, her sense of being a nuisance grows by the call), advocate, history/narrative sharer

Keeping people fed – planner, shopper, cook, dish washer (usually runs concurrently with dispensing medicine)

Keeping people informed - communication, empathy, patience, storyteller (everyone wants to know the same details – lots – and it is incredibly draining to have to tell the same story time and again, especially if it is complex and not a particularly happy story)

Advice and opinion – finder and synthesiser of knowledge and experience, communication, advocacy, opinion, debate

No advice, no opinion, just listen – hold back on what known, listening, empathy (often it is hard to know whether someone wants this or the previous point and it is quite a skill in being able to switch between the two within a conversation or situation)

Banker - ordering financial affairs, banking, accounting, managing benefits or grants

House alterations – planning, project managing, overseeing

Researcher - finding knowledge, assessing knowledge, synthesising knowledge and being balanced about it (I have worked hard to convince my Mum to be discerning when using the internet, she isn’t bad, but it took her years to hone her skills – as it would any of us, and there’s a lot of rubbish to sift out)

Philosopher - offering balanced and rational perspective, listening, philosophising

Co-ordinator - above all else the need to coordinate, arrange and balance all of the above, especially if you care for more than one person.

This is by no means a complete list, it is what is on the top of my head. The skills of logistically arranging everything, and speaking all the different professional lingo, and switching between, while advocating for someone else is a completely undervalued skill set. My Mum is phenomenal in her ability to juggle all these different elements, I’ve never met a multi-tasker like her, and I am in complete awe of her ability to do all of this while most of the time maintaining a positive outlook. Sometimes her outlook isn’t positive, it’s bloody gloomy, but I think that is only a rational response to the situation.

 

If you know someone who is a carer ask them about their life, ask if there is anything you could help with. I’d almost guarantee that they’d say no, they’re just fine. That may be the case, but tomorrow they may not be. Certainly my grandparents and Dad’s health has fluctuated over time, some days everything seems manageable, others it feels like the planets are colliding to conspire against us. Caring is one of the most thankless tasks, yet without it our society would grind to a halt. There are a whole army of carers who just keep the world ticking over, without most people knowing they are even doing so. Sometimes knowing someone else gives a toss is enough. Don’t be afraid to ask a carer if they are ok, you might not be able to support them or fix things in any way, but my odds are on just asking will help more than you realise.

ps My Mum is far more than a carer, she (some of the time) has her own life, her own aspirations and interests. Having re-read this I wanted to clarify that this is just some of the caring tasks she performs, it’s not all of them, and it’s not all she does – in fact she’s a one woman whirlwind who never stops doing. I thought it was an important point to clarify as I don’t think we should define carers by their caring role (unless they wish to do so) and this wasn’t meant to do that, more advocate and share some of the skills that this hidden army display!