Category: Lessons

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 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.

Where Was Moses When The Lights Went Out?*

22/7/2013

For a while, when I was a theatre stage manager, I worked in a county in the south of England. I'll call it Hampshire.

I was part of a very small community theatre company, touring a variety of productions around the area to village halls, schools, care homes, long stay NHS hospitals (that dates it!), and community arts venues.

It seemed to me that, at that time, most of the village halls were 'run' by retired Colonels. Certainly, when we arrived at each hall in turn at the agreed time, it was usually a retired Colonel who met us, let us in, showed us what was where and - if we were lucky - unlocked the kitchen and made us a cup of tea. So far, so kind.

I was then in my mid 20s, very small, very slim - but even though it was me driving the van that carried the set, actors, costumes, and all the necessary other bits and pieces, when we arrived the Colonels would always make a beeline for the oldest, tallest male actor, only to be told they needed to talk to me.

They were far too polite to 'harrumph' loudly, but were clearly not used to the idea of a woman being in charge. Yet, at the end of every show - without fail - these very polite older gentlemen would come up to me and say, in extremely clipped tones:

"Might be a girl - but jolly good."

It made me laugh a bit - quite kindly, and privately - and think I'd at least made some small inroads for womankind. And it taught a lesson about not making judgements based on prejudice but that - if you do - you should openly give credit when you find you are mistaken.

But that's not the main lesson here, although it's a good one.

On this one occasion, the village hall in which we were to perform was being extended and (for various reasons) the only way we could fit everything in was if we put the set up at one end, against the building works. In effect, the backstage area was a building site.

It was a Christmas show for children so (like all good community theatre) it involved a 'chase' sequence, in which one actor cannot see that a second actor is following him/her, appeals to the audience for help, and watches as numerous 5 year olds go purple in the face screaming and urgently pointing, "He's behind you."

Ah, the old traditions. :-)

We'd just reached this point of frenzy and - likely - noise levels that would be prohibited in law in any other place of work, when the lights went out. All of them. All at once. None of our lighting and sound equipment worked. Of course, this was rural Hampshire so there were no streetlamps or any external lighting. It was pitch black, indoors and out. Fortunately I had a torch (being a well organised stage manager), but even so I was stumbling around this building site trying to work out which bit of our equipment had caused the power to trip, and how I could get round to the front of the building to switch on the hall's lights.

Luckily, the two actors then 'on stage' had the presence of mind to stand still, and the one being chased to call out, "Where is he? I can't see anything", to much laughter.

Then our lights and sound suddenly came back on, and the show carried on as normal.

At the end, as the audience was leaving, I went up to the retired Colonel in charge of this particular venue to say I was so sorry about the blackout, and hoped our equipment hadn't caused a problem. I was worried we'd somehow damaged the new electricals in the unfinished extension.

"No," he said, quite matter-of-factly. "I'd not put enough money in the electricity meter. So I had to put in another 50 pence."

And the lesson from this? (It's a simple one.)

When something goes wrong, it may well be for the most mundane of reasons.

(And, to answer the traditional music hall joke used as a title for this post* - when the lights went out, Moses was in the dark.)

Mrs Howard's Life Lessons - Part Two

8/7/2013

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As I mentioned in Part One of this post, Mrs Howard lived with one of her three sons and his girlfriend.

I'll call her son Dave. He was in his early 60s, balding, and he moved quite slowly: Mrs Howard said he'd been in the local mental hospital for a short time, many years earlier. It wasn't clear how long he'd been living with her when I knew her, but it seemed that he had been coming and going for several decades: every now and again he would move out and, she said, find work with tied accommodation, or travel, or go and live with other people elsewhere in the country.

I once met her other sons: they and their wives were at the house one day when I was visiting. She'd lit a fire in the front room - against Fire Brigade advice - and had been upset when the resultant chimney fire led to her being told again she mustn't do it. She was perfectly able to understand what she had been told, so it wasn't that; and she wasn't particularly stubborn, so it wasn't that: I think she may have felt that, as she'd not had a fire for some time, maybe it would be okay by now. It was a sort of 'fingers crossed' approach to life, to which many of us can probably relate.

Dave was in the house on that occasion - but he didn't come to say hello to me or his brothers. I think I saw him twice, all the times I visited, and only in passing. He was often there, though. If I saw him I would say hello, and he would look at the floor and say hello, and go quickly into his room. He lived in one of the two large downstairs reception rooms.

Also in the household was Dave's girlfriend - I'll call her Kathleen. She was an overweight woman in her 40s, whose long dark hair was always tied back in a very severe bun. She wore the same sort of blue nylon overall sported by Mrs Howard, which made her look a bit like a school dinner lady. Indeed, she told me she had worked in schools - it wasn't entirely clear as what, but something to do with being a school matron or a nurse, and she'd said this was how she'd met Dave as he'd once worked in the grounds of the same school: but of course I was visiting Mrs Howard about her house, so finding out more about Kathleen wasn't the top priority.

Kathleen didn't, however, live in the house with Dave. Instead, she lived in a small caravan parked in the large back garden. She'd been there for some time, she said. She was a very cheerful woman, and she and Mrs Howard appeared to get on well. She didn't come into the house very often and seemed to live quite separately from Dave, although she said he was her boyfriend. I never went inside the caravan: again, I was there to visit Mrs Howard so I didn't ask to see, and I wasn't invited. Kathleen wasn't working when I met her: neither was Dave. He was claiming the then state benefit for people with long term illness. She was waiting to hear about another job.

One of the things about Mrs Howard was that she was what I'd describe (as a sort of shorthand) as 'selectively deaf'. I'd noticed this before: if I visited when she said Dave was in, she talked very loudly; but when he was out, her voice dropped to a whisper. I would follow suit, mirroring her volume.

She did something similar that day when her other sons were there - appearing not to hear what they were saying so they spoke very loudly, then perfectly able to hold a conversation with me after they'd gone at a much lower volume. So I said I'd noticed just then that she found it easier to talk to me on my own rather than when everyone was there, and wondered if she'd asked her GP about checking her hearing?

We were sitting in the back kitchen, rheumy old dog on the floor in front of the coal fire, Mrs Howard sitting at the large wooden table, and me in one of the easy chairs opposite her. She leaned forward, and beckoned to me to do the same. Her voice as low and as quiet as she could manage, she whispered:

"Dave listens to everything I say, so I pretend I can't hear."

Then she sat back up and smiled at me and, patted her nose with one finger, as if it was our secret. I wasn't sure what to say, but as she didn't seem to be worried about it I smiled back and carried on with the matter in hand. I mentioned it to my colleagues, but her claim was seen as very unlikely and one of Mrs Howard's many eccentricities, along with showing her mastectomy, the loose dentures, playing the piano at the care home over the road, and other aspects of her life: not anything of any note.

Then I changed jobs and moved away. Mrs Howard's need for house renovations got nearer the top of the list and, eventually, a couple of years later, the work was done. She was helped to move out temporarily; by then, Kathleen had gone, and Dave had taken the offer of moving into his own social housing flat.

When Dave's room was being emptied prior to the work starting, the contractors found and removed a number of cassette recorders, and a large reel to reel tape machine, which he'd left behind. It was so damp in the house that all the plaster in the downstairs rooms had to be hacked off, and the bare bricks and stones exposed. And, in Dave's room, this also exposed a extraordinary array of tiny holes through the wall that divided his room from the back kitchen, each containing wires connected to the sort of cheap microphones that were used at home by many people in the days of cassette recorders. There were, apparently, masses of them.

Mrs Howard had been right. Dave had been listening to everything she said - or certainly trying to. Perhaps, when he was in his room, she spoke loudly so he didn't feel anxious about what was being said because he could clearly hear her and - to make sense of her speaking so loudly - she made out she couldn't hear very well. Perhaps, when he was out, she would whisper in order to talk more freely but also because if she was so quiet that it couldn't be recorded, Dave wouldn't be suspicious about what happened in his absence, and would feel able to go out more. Perhaps there were other explanations. But with that came two very important lessons. Even when things seem very unlikely, it doesn't mean they're not true. And just because they're being described by older people - and in this case an older woman whose life was a little unusual - doesn't mean you shouldn't pay attention.

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Life lessons from Mrs Howard - Part One

29/6/2013

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A long time ago I knew a lady I'll call Mrs Howard (not her real name - and as she was in her mid 80s then I very much doubt she's still with us).

Mrs Howard lived in quite a large, three bedroomed semi-detached Victorian villa, on a narrow, semi-rural road about 2 miles from the nearest town. Apart from the other half to her semi, there were only a few houses near to hers as well as - slightly bizarrely - a care home on the other side of the road, opposite Mrs Howard's house.

On Sundays, Mrs Howard used to go over the road and play the piano "for the old dears" as she put it, although she was older than most of the residents. Lesson number one: other people might be old, but you never are.

One of her sons and his girlfriend lived with her - or rather, the son lived in the house and his girlfriend lived in a caravan in the back garden. Their story comes under Part Two of this blog.

Mrs Howard's house was the dampest place I've ever been in - before or since. Upstairs, in the bedrooms, the wallpaper was peeling off the walls in great clumps. You could smell the damp in every room, and there was a lot of mould. Most of the sash windows had been either nailed shut, or were so badly warped that they no longer opened. The house had last been rewired in 1935, Mrs Howard thought, and many of the sockets either didn't work or could only be used for appliances with 'round pin' plugs. It had been her husband's family's home, and she'd lived there since she got married in 1929.

The only form of heating was the open fireplaces - and the fire brigade had banned Mrs Howard from using two of these fireplaces because she'd had so many chimney fires, and they'd been called out so many times, that these weren't safe. This left her with one working fireplace for the whole house, in what she called "the back kitchen."

She pretty much lived in the back kitchen, which spanned the width of the house. It had a small scullery to one side, with an electric cooker, a sink and a cupboard. In the back kitchen was a fireplace with a small range, a large dark wood round table with a thick blanket covering it, some dark wooden dining chairs, several very old easy chairs covered with bright, multi-coloured crocheted blankets, and other furniture - and the oldest dog, with the rheumiest eyes you've ever seen. She had a very low income.

Mrs Howard wore a blue nylon overall which buttoned all the way up, skirt, thick tights, and lace-up shoes. She'd had breast cancer - and a mastectomy, and she frequently showed the scar to visitors. One of the local council housing officials who was involved in the application to get her house renovated - a small man, with what appeared to be a bit of a power complex - would ring me every time he had to visit so I would be there to be shown the scar instead of him, and so save his blushes. I would to say to her, please don't feel you have to show everyone your scar, but she said she was proud of her 'war wound' and didn't think anyone should be afraid of it.

She also had the most ill-fitting dentures I've ever seen, and it was hard when talking to her not to stare as they rolled around her mouth. How they didn't fall out was a total mystery. I asked her once about her dentist and she beamed at me, dentures loose and gleaming, and said the old dears at the care home often complained that their dentures hurt them whereas hers were fine. I left it at that.

Mrs Howard took a liking to me, and I to her. So, because it was me, and because she wanted to give me a treat, every time I visited she would offer me a cup of tea. In those days - more than now - I drank tea that looked as if you'd crept up behind a cup of hot water with some milk in and frightened it by shouting 'boo' (very, very weak, in other words). In contrast, Mrs Howard made the strongest tea ever - almost orange in its concentration. And because it was me, and because it was a treat, she wouldn't add milk, she would instead put in a huge dollop of condensed milk and then - sticking in her finger and flicking out any stray dog hairs that were floating on top - she would proudly present to me the strongest, sweetest cup of tea on the planet.

It was so bad I couldn't always face it, so I would occasionally arrange to call in just after lunch so I could legitimately thank her and turn down the offer because I'd just had a drink. But she took such pleasure in making this tea for me that I didn't do that very often.

She was a very kind, very interesting woman, and one of the lessons she taught me was the importance of being able to receive that kindness. Many of us are good at being kind to others - but receiving it is an art form in its own right, and it's an important contribution that many very ill people make to life that goes unremarked. She made me the sort of tea she thought was the best treat she could possibly give me. And so she also taught me a little about what it's like to be on the receiving end of something another person thinks is best for you, when you haven't been asked. Both these lessons have served me well, in my professional life and personally.

But that wasn't the end of Mrs Howard's life lessons - there was an even more important lesson to be learned, and that's the subject of Part Two of this blog.