This is an interview with SPLASH FM and Graham our Crawley and Horsham Support Group Facilitator. Hear Graham talk about his story and the work he now does with us.
HOW CAN I BE A MORE EFFECTIVE CARER ?
Something that is much in my mind, a question I have often asked, and have heard others ask, many times before. It is not one that is easy to specify and not one for which there is a definitive answer, for no-one else is in my head, or in my mind, or in my situation. No one else really knows how, as a carer, I try to manage our daily routine with all its ups and downs, precarious balancingacts, and hidden pitfalls. Conversely, I can do no more than try to understand how life works for anyone else. After all, there are often times when I do not even know what goes on in the mind of someone I have known and loved for fifty years. What works for us, or doesn’t, would possibly have opposite, and possibly dire, consequences for someone else.
I could read all the books, and have read many. Some are helpful and some are awful. Most are written in the aftermath of one person’s experiences, which are totally different to ours. Others are written by “experts” who have no personal experience at all of the often devastating consequences of brain injury in all its many forms. I could trawl the internet, but that is even more confusing.
There is much that can be learned from sharing with people in similar situations, and that is one of the great values of groups such as ours, and it does bring a better understanding. But even in our small group, each one of us is unique, each with a completely different set of management strategies.
Your answers are not necessarily my answers, and at the end of the day, I have to work out my own.
So what was the question? ‘How can I be a better and more effective carer’? I want to encourage and stimulate my partner, to comfort and reassure her when she is anxious, and try to anticipate and meet her needs. I don’t want to put pressure on her, confuse her, or cause her stress or anxiety. I just want her to be peaceful and happy…Simple as that!!!
But therein lies a great danger. All I have stated so far is about what ‘I want and that’s not the right way to be looking at this issue, for it then appears that I am trying to impose my way of thinking on someone else who is not always capable of expressing her own needs. And in any case, she is also doing her very best to care for me too, and it can end up with everyone’s good intentions causing more conflict than comfort.
So it all comes down to balance, empathy, sensitivity, awareness, compromise, good old-fashioned common sense and a whole lot of loving.
Nothing to it really! So why can it be so hard? Answers to that question on a postcard please. We really do value our evenings with our new-found friends at the Headway meetings, and have learnt so much about courage, fortitude and acceptance of what life can throw at us. Support Groups such as ours provide an invaluable resource of mutual care, understanding and information. Above all they provide a safe and non-judgemental haven. We have had some experience of running support groups over the years and we do know how much time and hard work is involved in the administration of such groups. We would therefore like to take this opportunity to pay tribute to Headway and their team for all they do on our behalf. It is very much appreciated, we are sure, by us all.
And finally; HUGS WORK WONDERS!!!!!!!!!!!!
Chris Petty, 2015
(Worthing Support Group)
My Determination & Understanding
A terrible accident
That changed my life
It was full of despair
And certainly uncertain.
My past self was forgotten
I couldn’t remember who I was
But deep down, I also always knew
That eventually, I’d be ok.
I met a stranger when I woke up,
She did a lot of things I didn’t like
Which annoyed me a lot.
I wasn’t ready to make new friends!
So I fought and I screamed at her.
All I wanted was for her to go away,
I didn’t like her,
She wasn’t very nice to me.
She was just like an annoying child,
Always doing the wrong thing,
Saying the wrong thing,
She always seemed to let me down.
She always forgot stuff,
Even the important things.
I couldn’t rely on her,
I didn’t trust her opinion, it’s so weak.
It frustrated me how slow she was,
And how slow she still is,
She always made me look like an idiot,
She’s so stupid!
So I tried to shut her up,
Started yelling at her,
Telling her she was an idiot,
“Leave me alone!”
I couldn’t get rid of her
So I just pushed her in the corner
I was too scared to let her go out,
Just in case she did something stupid.
I watched her cry, every day.
I was so mean to her,
I watched her become weaker.
Her fear- it became bigger than herself.
I felt awful,
And I felt sorry for her.
How could I be so horrible?!!
So I held out my hand and said
“Come on, let’s go out,
Let’s go to the shop together,
And discover something new”.
We bought beads & a tiny duck ornament.
So with some glue, and tweezers in hand
And silent words of encouragement-
‘You can do it’.
The amount of effort it took
Was incredible, but I did it!
I challenged myself, and I won!
And I found I enjoyed it.
I wanted nothing more than anything,
To improve my attention
And my concentration,
To help my new found friend.
We saw some coloured wire,
And curiosity got the better of me,
Not a clue of what I would do with it
So it was a new exciting challenge!
Arms rolled up and ready to go.
My eagle eyes spot some sequins,
Let’s make a dandelion,
(Where did that come from?!)
So Trio Dandelions was born! ;o)
One challenge after another,
I’ve always wanted pictures
To decorate my empty walls,
Now I make them!
That’s how it all started!
From me & my injured brain, to you & yours!
Not only did this get me outdoors
It taught me that fighting it,
Makes it worse, and besides…
I did find something, something great.
Don’t be a bully to your brain,
Be determined to get the best out of it.
Eat well, sleep well.
Practice is perfect.
We all want our lives to be better,
But we won’t do anything about it???
Or we find ‘reasons’ to not do something
There’s too many ‘ifs’, and ‘buts’, or ‘maybes’.
I say DO EVERYTHING!
If you want everything to be better,
You need to be willing to try everything
And if you fail, do it again!
Everybody has somebody.
People who wants to help you,
But you have to let them help you.
They will not make you do horrible things!
Especially if you are lucky enough
To have the help of a therapist,
I challenge you! Challenge yourself
To do everything they suggest!
That’s exactly what I did.
There was a few that I didn’t do,
Things that weren’t right for me,
But at least I can say I tried.
I discovered I have a lot of patience,
Through determination of course,
You get nothing, from doing nothing.
Get yourself out there.
I’ve written all of this down in the hope
That somehow this will help you,
Help you by encouraging you to get the best
Out of what you’ve been given,
And to get the best out of what you’ve got.
I wish I had this when I needed it!
My list of positives thanks to the accident
- Discovering my art…of course!
- I quit smoking (I think the coma might have helped with that!)
- Brought me closer to my partner
- I’m healthier
- I eat well
- I’m fitter
- I’ve put on a bit of weight
- Working part-time (who wouldn’t be jealous!)
- Less responsibilities
- All the help I’ve received from various therapists and other experts
- Having more appreciation, and consideration of others
- The timing of having therapy also helped me get through other difficult times, the death of my mum, and more.
- I don’t gamble anymore (fruit machines, lottery etc.)
By Kerry Jeffs
From Worthing, West Sussex.
Road traffic accident: Oct 2012.
Feel free to share.
Story of a Support Group member, September 2014
In 2002 my family broke into my house and found me laying on the floor. Much later on I worked out that I had been laying there for two days. They called an ambulance and I was taken to Crawley Hospital where they kept me in overnight. It was later discovered that I had suffered a massive brain haemorrhage and I was then rushed to Hurstwood Park Neurological hospital in Haywards Heath for ‘life-saving’ brain surgery.
After spending six weeks in various hospitals, I went home alone. I was under the impression that after a few weeks I would be back to work and I would resume my normal life. Unfortunately no one told me that I had ABI (Acquired Brain Injury). I would never be able to work again and I would have to work very hard to regain my skills I had before. It was a nurse in Hurstwood Park hospital that gave me a list of 5 people to contact who she said would be able to help me. I had gone to the hospital for tests and just didn’t want to go back home.
I phoned the first 4 people on the list and no-one could help. The last person on the list was from Headway West Sussex. I remember phoning a lovely lady called J and by that time I was at my wit’s end! I just said I didn’t even know why I was calling her and she just understood what I was going through straight away and she listened. I hadn’t a clue what was wrong with me, we joked about the fact that I was usually up a ladder in the loft emptying my buckets of rain water from my dripping roof.
J helped me so much. I got the roof fixed and she helped me get some equipment so that I could get in and out of the bath and use the toilet safely.
After being confined to my house for 2 years and relying on my family to do all my shopping for me, my goal was to walk the 10 minutes to my local shops and get my own shopping and to get my independence back. J told me to walk to my next door neighbour’s house on the first day, then the next house the next day. She said I could do it but I had to take ‘small steps’ I have always remembered that!
I was able to walk but because my leg muscles were so weak, I couldn’t walk far. When I realised that even concentrating on walking was too much effort for me, I eventually learnt how to get to the shops on my bicycle. I would pedal a bit and coast a bit but I got there in the end. I was determined to take those ‘small steps’.
J also arranged for me to get to Headway West Sussex meetings in Horsham and I learnt so much more about head injuries from others there that had ABI too. Headway West Sussex do a fantastic job. I now understand my condition and have come to terms with it. I might not be able to do what I used to, but I am now living a ‘different’ life but it is an ‘independent’ life again which is more than I ever thought I could.
Thank-you so much Headway.
New challenges after Brain Injury by former Worthing & Bognor Regis Support Group Facilitator
I seem to remember I said something at the start of 2014 about taking up challenges over the coming months and I certainly did that. Despite not seeing the lights, I managed a 4 mile trek across a frozen lake and through part of a forest. Ever tried to stand up again when you end up face down in 3 feet of snow with a pair of tennis racquets strapped to your feet?? I also went on a reindeer safari and drove a husky sled pulled by a team of 7 dogs – hair-raising or what!!! Oh, and I mustn’t forget the magical, candlelit, night time walk through the woods, up the side of a mountain to a look- out point, in search of those elusive Northern lights with the high speed ride back down again as pillion passenger on a snow-mobile. I said it was challenging but “Oh boy was it FUN.”
Rudolph and I get acquainted after an amazing ride through some of the most beautiful scenery you have ever seen. It really is indescribable.
So, is there anything deeply meaningful about ABI connected to all this? I suppose it depends how you look at it. I have to confess that before I went I was terrified. It was the first time since I “Fell off my perch” that I have been away like this on my own: especially so far away. Right up to the last minute I kept asking myself if I had made the right decision to go, but I refused to be beaten and told myself that I had nothing to fear except fear itself and that’s what got me on the plane (I didn’t tell Pete any of this at the time or he would probably have stopped me) Once we took off, the most amazing thing happened – I got this wonderful sense of exhilaration: I had made it, I was on the plane, 35,000 feet up, on my way to Finland. Nothing could stop me now and I wasn’t going to let anything get in the way of me having a good time.
I think what I am trying to say, is that if opportunity comes knocking – grab it with both hands. Don’t take unnecessary risks obviously and stay within your own limits, but sometimes you have to test those limits to know what they are. You don’t know what you are capable of until you try. As I told myself at the outset “I had nothing to fear except the fear itself” and if I had given in to it I would have missed the trip of a lifetime. Would I do it again…………You bet I would. It was a challenge, it was exhausting, it was scary at times but most of all I had a lot of fun doing it and I think that is the key. Sometimes we can take ourselves a bit too seriously: at least I can, so I think it is good to forget what has happened and get out there and play like a big kid.
As the psychologists might say – “it is good to let your inner child run free”
Worthing & Bognor Regis Support Group Facilitator, 2008-2014
Gabby Giffords and Mark Kelly talk about life after Gabby’s ABI
Group Offers Hope To Those With Brain Injuries – in the news on Spirit FM News.
This audio interview was given by Gwyn Sangster, our Worthing and Bognor Regis Support Group facilitator as part of the ‘Speaking up for Disability Project’ in collaboration with the Independent Living Association.
LOOK ON THE BRIGHT SIDE!
by Steph from Worthing Support Group
I have been thinking recently about the ‘good things’ that have come from having had a brain haemorrhage. Well, let’s face it I could write a book about the bad things….
Anyway, this all started when I went to a talk about the ‘creative power of thought’- sounds very in depth doesn’t it- but in fact it’s a very simple principle.
When we think about what will make us happy in our lives we tend to think of material things, like; ‘I will feel happier when I have had a holiday’, or, ‘I will be happy when I move to a new house’. Of course these things are just an example.
For those of us who had an ABI and, not forgetting our carers, our tendency is to think about who we were before our injury: If we are fortunate enough to remember anything of course. Now when we spend time thinking about this, it creates negativity in our thoughts and the more we think about it, the bigger the gap becomes, and possibly the depression and frustration that goes with it. This is because we are living through our thoughts.
If we slow down though and start to live more in the moment, or ‘the now’, we can start to fully appreciate how far we have come. I thought I’d share something what happened to me this week that I feel shows this can work.
Over the last few months I have had my ‘disability living allowance’ stopped, followed by my ‘employment support allowance’. There is of course nothing wrong with me as far as they are concerned- after all I look fine! I am a walking miracle as far as my family and friends are concerned and I am only too aware how well I have done. However, although I think I could cope with a few hours a week, I now know my limits. Something that I certainly didn’t prior to my brain exploding!
So, here I am, trying to find a job and being told by my disability adviser that it won’t be easy, having less and less money coming in. Then we receive a letter from ‘tax credits’ this week to say they overpaid us £4,000 and we need to pay it back by the end of August! The ‘old Stephanie’ would have gone into orbit, but instead of that, I looked at things in a very different light. Let’s face it- they can’t take from you what you haven’t got, a fact I explained to them.
As long as we have each other and enough to pay our bills and put food on the table (something many people don’t have) I consider myself wealthy beyond measure. I was recently told by a family friend how well I looked, when I told her I was thinking about going back to work, she said “After what you have been through! You just need to cut your cloth according to your thread!”.
So on that note I have come up with my ‘triple AAA guide to thinking positively’;
ACCEPT- Until we accept what has happened we will find moving forward very difficult. For me it is the key that unlocks the door to our future happiness.
ADAPT – Once we have accepted our situation, no matter how bad, we can look at ways of changing to accommodate the new person we have become. It is vitally important here to ask for help, advice and share how we feel with others. This is where our group is so vitally important.
ACHIEVE – Every little thing we do is an achievement and individual to us. For me, managing to brave the crowds recently to watch the Olympic torch procession was a massive achievement. But take me back three years and sitting upright would have been just as big an achievement.
Just a few ideas folks, hope it helps
AFTER THE EVENT by Chris Tricker from Bognor Regis Support Group
The train crept out of the tunnel,
No knowing the journey it was on,
Not aware of the itinerary,
Or why the passengers had gone.
The driver tried to be helpful,
A good one but new to this line,
The conductor tried to assist ,
But the stationmaster thought everything fine.
Controls were unreliable and fettered,
Although engine functioned apparently well,
The carriage as polished as ever,
But the driver felt he was driving in hell.
The speed of the train was variable
The countryside went up and down,
Too many people in conurbations,
Indifferent to the train in town.
Oh for a siding to slip to,
To rest and be serviced like new,
To top on fuel without stress
And replace that missing screw.
We know trains don’t last forever
We know they go rusty when aged
However a train on a new line needs time
To adjust and to be assuaged.
A CAUTIONARY TALE by DARREN from Bognor Regis Support Group
At last month’s meeting it came up about compulsive or obsessive behaviour. This is why the meetings are so important to me, sometimes a subject or behaviour can come up and i can totally sympathise with it. Someone said about their sons obsessive behaviour and I realised I am just like it, I get an idea in my head and I become consumed with it, it’s like i have tunnel vision and all I think about is that. For instance recently i see a series on sky about cafe racer style motorbikes, it excited me interested me CONSUMED me! I have no money no job and barely survive but I found myself trawling the internet for a suitable project. I was obsessed and eventually found a motorbike suitable, I pressed the buy it now button on my keyboard! I was now committed to buy this, only then did I start to think where was I going to get the funds from? But I knew I had to have it! I found myself using my rent money!!!!!!!! but I could not stop myself , it’s a compulsion. It has taken me the best part of 4 months to get straight again with my rent, I am very lucky the letting agent understands. Since then I have stripped the motorbike down and it now sits in my shed in bits!!!! Other compulsions have taken its place, the latest one was I saw a vintage suitcase on Ebay and thought it would look nice as an interesting piece in my lounge, I now have 9 of them???? I wanted a wing back chair I now have 3 of them, I have 3 oak table and chairs, 3 double beds the list goes on. My garage is at bursting point. I was never like this before, this is behaviour
The views expressed on this page are those of the individuals featured and do not necessarily reflect the views of Headway West Sussex.