Category: Communication

The Other Side of Caring, Part 1: Emotions

10/6/2014

I really have become incredibly erratic about posting on here - not through a lack of ideas, but a lack of time.

One thing that's taken up a lot of time recently is a photo film I've made of three family carers and the support they receive in their area (which happens to be in Oxfordshire, UK), for National Carers Week (9-15 June 2014).

The film - A Grand Job - looks at two main things - how can you tell you are a carer, when you are already in that person's life as their sister, partner, friend? - and about how the support they've received (from Action for Carers Oxfordshire) has helped them.

One of the things talked about (by Deirdre, who is caring for her husband with vascular dementia, diabetes, and other health problems) is the emotional side of being a carer: that sense of being overwhelmed, out of the blue, as the accumulation of what you're doing and what you're facing hits you. As Deirdre says, she became a bit weepy, but got through it and got on with it because it has to be done.

How being a carer affects you emotionally will vary hugely from person to person, not least because we are all different - the relationship with the person we're supporting is different - and the nature of the care we're providing is different, varying through a whole range of aspects.

How it can feel is as if a knot is twisting its way through your body.

There's not much support with the emotional side - I guess we're all much better at doing practical things. Certainly, as a carer, one of the things that can aide your own feelings is to be busy doing practical, caring things. To feel that you are 'doing something' (rather than 'doing nothing') can often be calming, even when you are exhausted: it's counter-intuitive, perhaps, but no less true for that.

And, of course, there is the very real issue that if you did truly 'let go' of how you were feeling, you might never be able to stop.

Both of which slightly beg the question, so how do you support a carer emotionally? I can answer for me - as the carer for my mum during her terminal cancer - but wouldn't assume this is the same for others.

For me, two things made all the difference. The first were those who asked how I was doing - even if I didn't share much in those answers, it was the fact that the question was about me and not about my mum. Don't get me wrong - they asked about my mum too. But a few of them had the nouse to ask about me, and not just me as a carer, but the whole kit-and-kaboodle full me.

The other thing that would have really helped was practical help in my own life. My mum lived over 100 miles away, so I was constantly driving (it felt) long distances to be at her house while she had surgery, chemo, more surgeries, more chemo, and the rest. I simply wasn't at home much, for nearly 18 months. I could really have done with someone popping in to water my plants. Or pick up the post. Or - best of all - mow the back lawn. Just practical stuff. Anything. Just to keep things ticking over: otherwise I had that to face, too, when I raced home, in between. Nothing to do with the actual caring, but a by-product of my simply not being there.

My neighbours were great - but I only have 8 of them. Two of those lost their partners while my mum was having chemo (one in her 50s, one in his 60s - so not so expected as you might think). One house is a holiday home and the person seldom there; another lives part of the year overseas and wasn't there much either; another neighbour, in his late 80s, was showing signs of advancing dementia. And on, and on. (And they did give me help, for the record, one in particular - the point is, they had their own major stuff to contend with at the same time. So there were limits.)

So, if you know someone who is a carer - someone who, as the carers in A Grand Job make clear, is helping another person who couldn't manage their daily life without that help - ask them how they are. Them. That person. And because we seem to struggle so much to tackle the emotional side, see if there's something practical you could do for them, in their own life, that's nothing to do with the caring role.

Thank you.

The impact of 'No' (Part 1)

4/3/2014

There's been a long gap in story telling on this site - largely taken up by my telling and sharing other stories in other ways and in other settings. That's a story in its own right, but perhaps not for here.

But I couldn't very well have a story about the importance of 'yes' without also sharing a story about the impact of 'No'.

There's two stories in fact - so I'll tell them in 2 blogs.

The first is about an older lady I'll call Mrs Rossi. She was a widow, living alone in an old terraced house. Her late husband had had some connection with coal mining, and as part of the very tiny pension she received she also got a free coal allowance. So that was what she used to heat the house: she had a really neat little coal burning stove, on which she could also keep warm anything she'd cooked such as soup, or a casserole. That was always lit in the room in which she spent most of her days and evenings.

And, in fact, at the point I knew her, having coal fires as her main source of heating wasn't a problem. She could manage to bring in coal in a bucket from the coal bunker outside the back door perfectly well, and she didn't have a problem with cleaning it all out: well, she grumbled a bit but there wasn't a physical difficulty, let's put it that way.

The problem for Mrs Rossi was two-fold. Firstly, this room - her living room - had a very damp main wall and the room needed a new damp proof course. Mrs Rossi didn't have enough money to pay for this herself, but she qualified for a grant from the local council (for those in the know, that rather dates this story!). So far, so good. To remedy the problem, the builders would remove the skirting boards and the plaster on the long damp wall up to a height of 1 metre, replaster it and redecorate. All within the grant - so no cost to Mrs Rossi. Even better. Except.

Except that this meant removing the wallpaper that her late husband had put up - the last room he had decorated before becoming ill and dying. Mrs Rossi was absolutely adamant that the wallpaper wasn't to be touched. But there wasn't a way - at that time, anyway - of doing the work without removing the bottom few feet of the wallpaper. And Mrs Rossi hated the damp with a vengeance and also worried about it - and she regularly rang up all sorts of people (me included) to let everyone know how anxious she was to get it sorted out.

So, with her daughter, we tried to come up with a solution. First - with the builders - we suggested that they very carefully 'drew a line' along the wallpaper so the top part stayed intact, and then the bottom part could be redecorated with a border at the height of a dado rail and then a new wallpaper below that. No, Mrs Rossi said. None of the wallpaper was to be touched.

Next, her daughter managed to track down some more of the same wallpaper - so we suggested the room could be redecorated using the same paper, so it would look the same as before (in fact, it would have been cleaner and brighter - as anyone who lives with coal fires would understand - as the previous paper had been put up some 11 years earlier). No, Mrs Rossi said. None of the existing wallpaper was to be touched.

Then we talked to her about whether - if her husband had lived for longer - he might have redecorated the living room. Yes, she said, he would have done. But he didn't - so he hadn't. So, no, still the wallpaper wasn't to be touched.

So we asked her what her solution would be. Sort out the damp, she said, but leave the wallpaper intact. But the builders - and the grants officer - said that wouldn't work. So, in the end, the solution was that the wallpaper remained. And so did the damp. And Mrs Rossi continued to ring and write to complain about the damp, and her daughter and others continued to have the same circular discussion with her: the damp can be dealt with if some of the wallpaper is removed. No, Mrs Rossi kept on saying. No. No. No.

The power of "Yes"

17/8/2013

When I was about 7, we moved to a new house halfway up a hill in the same town, and I acquired new neighbours - on each side, a retired couple.

In the house slightly uphill from ours were a retired designer and his wife, together with her mother. I'll call them Mr and Mrs Keen. I think Mrs Keen's mother was the first person I met who likely had a form of dementia. I didn't meet her straightaway: in fact, I didn't really get to know Mr and Mrs Keen until I was around 9 years old and accidentally lobbed a tennis ball over their fence. This was the introduction to what would become one of my most important friendships, growing up.

Mr Keen's design work had been mainly concerned with exhibition stands. At some point, as a student, he'd trained alongside Henry Moore - which was massively impressive, even to a 9 year old, not least because I'd seen photographs of some of Moore's sculptures of 'people with holes', as I thought of them. He was also a very skilled furniture maker, and had made his wife a beautiful sideboard as his wedding gift to her. Now he'd retired, he spent every morning out in his garden, growing flowers, fruit, and vegetables, and, in bad weather, looking out at the garden from the comfort of his greenhouse. They had a cat, who'd turned up in the back garden one day - a huge black cat who was now so old his fur had faded to dark brown. The cat spent a lot of time in an old rabbit hutch raised on a platform that Mr Keen had adapted, taking out the door so the cat too could sit inside in bad weather and look out at the garden, also in comfort.

They hadn't had children, although Mrs Keen did once tell my mum it hadn't been through choice. Mr Keen had had mumps as a young boy and she thought it was likely this had been the cause. Of course, in her day, it had always been the woman who was 'blamed' for being infertile and I think she had found that very upsetting at times. She had very poor eyesight and on medical advice had to wear dark glasses when she was outdoors, even in the winter. In the 1970s, this must have looked very odd indeed.

Our friendship developed over cups of tea after school in her back kitchen and, later, Saturday evening TV drama programmes in her sitting room, where the beverage of choice was Birds Mellow Coffee Powder made up with hot milk.

We always found plenty to talk about, not least as I got older because Mrs Keen had been to what was now my secondary school. She thought it was very funny that the 'New Wing' - that really had been new in the 1920s when she was a pupil - was still known by that name into the 1980s.

Sometime before my dad died, Mrs Keen's mother died, and then sometime after that Mr Keen died too. So Mrs Keen - an only child - retired, in her 70s, now living alone, was without parents, spouse, children or grandchildren. A recipe for loneliness? Perhaps, but not inevitably.

Mrs Keen had two major things going for her. The first was that she was good company - she was kind, and thoughtful, and patient, and calm. She remembered what you'd told her, and she was interested in people. She was good at living on her own and, regardless of her eyesight problems, never seemed to find it a particular difficulty, perhaps because - and this was the second thing and the most important of all - whenever she was invited to do anything or go anywhere, she always said 'yes'.

Her view was that if you said 'yes', the worst thing that might happen is that you went somewhere for a few hours, got a bit bored, waited for it to finish, and then went home: so that didn't feel very bad at all, not to her. And, of course, you might instead have a very nice time, mixing with people, finding out about something new, and perhaps having a bite to eat and drink.

But if you said 'no', in the end people would stop asking you - and being on your own all the time seemed to her to be much, much worse.

It was - and is still - a powerful lesson for any of us. Saying 'yes' opens up opportunities, where saying 'no' closes them down. When life is hard - as it became for her, dealing with the loss of her remaining immediate family in a relatively short space of time in her 70s - it is tempting to turn down invitations because saying 'no' and staying at home often feels the safest thing to do. But saying 'yes' - scary though it can feel - exposes you to precisely the sort of things you need to get your life back on something approaching an even keel: things in the diary to look forward to; company; learning something new; sharing food and drink; the potential of making new friends; and the step-change needed, when life alters significantly, of doing things you wouldn't have done had your circumstances remained the same.

The Importance of Being Lellow

2/8/2013

When I was growing up, two of the houses we lived in had the most significance for me, not least because I have the strongest memories of those times. A big part of those memories concerns the older neighbours living, in each case, next door.

My mum had a theory that I gravitated towards these two very different sets of neighbours because of something to do with wanting grandparents who were nearer, or more involved. l could see her point, but I was never entirely convinced this was what it had been about.

What those older adults offered - without knowing it - was a way to work out who you were. It wasn't the only way; but it was an opportunity to test out ideas and theories about life, and also give you something against which to challenge.

I don't for a minute think that's what they thought they were doing (I suspect they just thought they were being nice to their neighbour's little girl): but it is what I took from it, and that's pretty much the point of all our interactions with other people. Our contact with each other is hugely dependent how we interpret what happens, how we interpret what we think has happened, and what we learn from both. We all differ hugely on those fronts, but from those different interpretations all manner of misunderstandings and misery may ensue, sadly.

When I was very little - about 3 years old - the husband of one of these sets of neighbours would repeatedly tease me about the colour of my favourite dress: which you can see in the photo, above.

"That's a nice pink dress, Lorna," he'd say, over the low chain and link fence between our two back gardens.

I would stamp my foot and, hands on hips, turn to face him and say,

"It's not pink, it's lellow," to much amusement on his part. He knew I couldn't quite say the letter 'y', which was the purpose of his teasing.

My parents also thought it was funny, not least because they could see me standing up for myself; something my dad especially would have wanted to encourage.

Of course, because my mum would periodically tell and re-tell this story over the years, it's hard to know if I really remember it happening or if I just remember the memory of her telling the story - if you follow! (Memory is a very interesting, complex thing.)

But I do remember that feeling of pure indignation, which small children are so good at expressing so clearly, especially when they know they are in the right. And the lesson I learned? Getting cross doesn't mean people will do what you want (in my case, to acknowledge the correct colour of my frock), but you should always encourage others to challenge what's being said or done if they know it's wrong, whatever their age or your circumstances. (Learning what to do when people reject or ignore your challenge? That's a different lesson.) That teasing gave me not just 'permission' to stand my ground and argue my case, but experience in doing so.

But I also took two other things from this: things that, as adults, we should perhaps bear in mind when talking with children.

The first was that I didn't think adults could be all that clever if they didn't know their colours. And the second was I thought adults were a little bit, well, - not to sugar coat it - barmy.

The Other Side of Caring, Part 1: Emotions

The impact of 'No' (Part 1)

The power of "Yes"

The Importance of Being Lellow

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