Friday, 12 February 2016

How not do say the wrong thing? Comfort in, dump out!

I've being wanting to write commending this post since it appeared on my friend Janet's wall weeks ago. At first it seems really obivous, but there's much more to it than meets the eye, I think. Reflect on it it, the more true and helpful it is. For those who want to be a real help by their conversations with us, but who also want to be honest themselves, it's the most helpful of these articles I've read, but also one of the simplest.

I hope I've whetted your appetite to take a look at the article in full - it's not very long and the web reference is:

Silk Ring Theory - on how not to say the wrong thing.

if not, here's my little summary:

When someone is seriously ill, people are often wanting to help, but also to manage their own emotions honestly about what is going on. This can sometimes though end up being a burden rather a help to people closest to the action and emotion, and can become an intolerable strain on them. Reflecting on the metaphor of the rings of a tree can be a real help, however, and should help us all to be appropriate with their emotions, and to be properly supportive of those who most need it.

You need to begin with a decent sized piece of paper, an on it, draw an arial view of a sliced down ring sample of tree trunk. Each slice should be big enough to write a few names in.
Begin by writing the name of the person who is seriously ill in the middle ring of the tree. That person, apparently, has a golden ticket to say anything they want to anybody. It's your perk for being in the middle of the tree. I'd have thought that small children in your family might trump even your rights, but she makes no mention of that; perhaps they have to be set up early with an explanation that mummy / daddy might be very grumpy sometimes, and a guide of where they can go if they're upset. That's probably a better solution, there's nothing like the relief of knowing that you don't have to cope with  any 'dumping in' from anyone. Even if it's part of your nature. You can tell anyone to lay off you as a dumping ground, and if they can't cope, know it's their problem and feel free to put a block on them talking up your time.

To be fair, the majority of people do get that, though not all by any means. The next ring or maybe two, depending on where the people in your own fit, is the really important ring, and this is where people often don't get it at all. I have often in the past not got it, and this is where you really matter.

On the next ring, put the people you consider closest to the person who is seriously ill. If in any doubt, go with spouse and children before anyone else if they have them. They may not look closest, but chances are that they are, even if what they show on the outside doesn't make them seem it.

So in my own case, for example, if anyone feels they are closer to the pain of all this than Mike, Jono and Ellie, you are seriously deluded. Sorry folks but there it is. None of them are people who cry in public easily, but losing a wife or a mum is simply worse than losing a friend. And likely to have a much bigger toll on them.

If the person's nearest and dearest are much less obvious to them, why not ask them? It may not be appropriate, but it may be. If they don't have a particularly significant other or others, then the potential for mistreating each other is probably significantly reduced. Just general common sense should help.

Now that the immediate rings are done, it all becomes a bit more arbitrary. Who do you think is closer to the emotion in this than you are? Wouldn't it be interesting to see the person's own tree and see where you figure in that? The best rule I can think of is play modestly. If in doubt, assume you are a ring further out that you think you may be. Crucially, if you feel you're going to have to let go of your emotions, see if you can identify someone whom you can talk to to who is at least as far out as you are, and preferably further out than you. And now take a look at what the map looks like.

This you can call your "care in, dump out' emergency wall checker. Some people have even found it helpful to stick on the fridge when going though a serious trial; like waiting for a terminally ill patient to die.  There is only one golden rule to follow, apparently, and it's this. Apart from sideways traffic, e.g. between siblings, all traffic has to be one way traffic. When looking towards the centre of the tree, you offer ONLY SUPPORT AND CARE. If you need to dump your own feelings, then you ONLY CHOOSE TO DO SO OUTWARDS.

In order to enable you to do so, spend a little time what constitutes a 'feeling dump'.  It may, after all, be a simple request for information. If made in the right way, this can even be supportive. If not, however it can become highly exploitative and draining.

Consider, for example, one of my closest 3 being asked, in passing, "How's Debbie Today ?" Looks like a thoughtful question? Actually, it's probably a request for information from someone who's tired out, got other things to think about, and would prefer not to have to engage with it. They may not have thought about their mum all day, and been trying to have some headspace. But your question suddenly makes them feel they should be up the minute with news. It may be that they'd love to talk about it. But you can only find out by investing a lot more time in them, and if you don't have it to give, then don't ask them at all.

So, for instance, the way of investing care in would be to say "It's so good to see you. Do you feel like a coffee and a chat sometime? No worries of not - or if you're busy now but would like to just say when. My treat." You spend that time on letting them take control. "It's just good to see you. Trivia or deep stuff?!"  make it clear you're there for them. IT'S NOT THEIR JOB TO KEEP YOU INFORMED. If you want information that badly, then root for it on the inside, not the in.

It is a little complicated of course if one of your dearest few is part of a caring profession where the expectation is that they would your dumping ground on other matters. it is of course fine to expect them to be here in that way, though the really caring thing would be to find other dumping grounds for everything.The caring thing though is not to come near them with anything that bears any relationship to a dumping ground about the person they're caring for.

What a big difference those few things would make. And actually are making, as people become more sensible. Thank you for helping us all to cope in the best way we can x

Monday, 8 February 2016

What a difference a wig makes!

Thank you all so much for your encouraging comments after my heart to heart on the last post here. Did me lots of good to share all that, and even more to know it had hit a nerve with one or two others too. Suffice it to say you're an excellent therapy group :) and now at last my wig referral's come through, and I LOVE IT!! so much better than my little hats. just don't stand too close to the oven door apparently, or you might melt.

In this post I also want to look at another feature that's brought big changes to my life over the last year, and that's the issue of communication.A year ago, what took me off to A&E was primarily that my speech was getting very muddled - so much so that I  thought I  might be having a stroke. I remember the last straw was an inability to say  "Mushhhhhhhhhhhy peas!"  I could hear what I wanted to say but was unable to form the word. I was also suffering numbness in my right arm and hand. They popped me in a scanner, and sadly the results were worse than we feared - 2 brain tumours, in the left side of my brain. The swelling round them was pressing on the relevant bits of my circuitry - especially on the 'speech and language centre' in the brain right side. Steroids reduced the swelling and within days my speech was back to normal. A year on, however, and it is now much worse than it ever was, both in terms of written and spoken speech. It varies hugely of course. At good times I'm not too bad at all.  But occasionally I cannot get  thoughts and sounds to coordinate at all. Especially if I've just woken up.

Yet again,it was a wonderful nurse from the Day Hospice who had the time to say 'I don't know if you mind thinking about this, in which case just ignore it, but it would  be useful for me to find out what helps and what doesn't if someone's having to work hard at communicating. Is is helpful, say, if we try and finished off your sentence?

Good to be made to think  about that. I seemed to conclude that really I didn't mind either way if my listener tried to help me finish (sounding a bit like a 2 Ronnies sketch!) or let me struggle to find things if I could. What I did mind, though, was pretending that they'd had heard and understood when they hadn't, or clearly pretending  not to hear, maybe because they were embarrassed to have to ask. And that one has been back to rebuke me, because I've done it to a friend. I'm afraid I couldn't face returning her phone calls, so I just didn't do it. One reason I won't attempt to speak on the phone now.

What frustrates me most about the state of my speech? I'd never have realised this, but it was obvious when it came to me. I can't tell a joke any more! To tell a joke you need speed and timing, neither of which I have now. Learning that I can just shut up, and not be the  centre humming along in every conversation, is hard. When a few of us are talking, too, learning that I can just sit back and listen rather than have to get my thoughts in is new. And I often have to make a conscious decision that my pearls of wisdom are not really necessary on everything.

I find myself thinking a great deal about Stephen Hawking these days. Apparently, his ability to use his voice is down to one muscle in his cheek which still responds to him. One muscle! So what happens when that one muscle finally goes? I can't see  him lasting the week to be honest. Because it seems to me that what has kept him going for so many year is his ability to communicate. That goes, what has he left? No reason at all to stay alive.

Compared to Stephen my ability to communicate seems so easy and fluid. My ability to type is still here, although it takes me a long time now. What happens is I get everything down pretty quickly, but when I look at what's on the page it's gobbledy gook. I can still decipher it but only just. So I go  back painstakingly through each paragraph and correct. Pride makes me cross when mistakes get through! On my newly gifted iMac though, its so much easier to see and to read, it gives me joy every single day. So long as I have a  way to communicate, that what gets me up and determined. And technology has made that possible. So - thank you Blogger; thank you Facebook; thank you beautiful new iMac. With a bit of well planned effort I can still speak, Or put another way, I speak, and therefore I am.