The Other Side of Life (and the guilt that goes with it)
Mum, carer and CSW support worker, Jacqui talks about the importance of letting the G word go.
It’s obvious really, but there is, of course, another side to life. It’s often difficult to see it and there is a huge sense of guilt associated with thinking you might even enjoy it. It takes energy to balance the guilt with desire; especially if it might be upsetting to others and something you’ve forgotten how to do.
Whether we like it or not, the rest of the world does not stop and wait for us to catch up when we are down or behind, or busy looking out for others. The seasons don’t wait, opportunities pass by and friends move on. We have every right to seize a moment, crack a smile and look after ourselves, but we are so conditioned to think we are not worthy or deserving of these ‘luxuries’ that we often shake our head and keep on going.
Looking after somebody else is not always easy and looking after yourself gets overlooked time and again until you are brave enough to try it; to challenge your own thoughts that others should always come first.
When you find the strength to say ‘no’ to a request or demand from somebody else, or you are encouraged to take some time out for those simple pleasures that don’t always come easy, this is what you discover:
- There is still pleasure in ice cream, flowers and sunshine. Nobody will judge.
- Baking a cake is relaxing. You can still share the results.
- Shopping is possible without thinking about something or somebody else all the time.
- You can have coffee with a friend and discover more of ‘the other side of life’.
- A trip doesn’t have to include everybody. That way you have something to talk about.
- Talking and sharing with others feels ok.
- Bubble bath smells better than cleaning fluids.
- Friends are gold dust and want to help.
- Relaxing is strange but good for you.
- You have more emotional reserves to carry on caring.
How does your garden grow?
A few years ago my wife suggested we get an allotment. What a lot of hard work! Digging, some more digging and then a bit more digging. It took a lot of effort to remove the bind weed, and get it ready for growing vegetables.
Not only did I have to carry out hard labour, but also communicate with people I did not know – experienced allotment holders who knew how to talk vegetables. For some people this is easy, but as an introvert, conversation about soil quality and manure proved easier said than done.
Over the last two years things have changed and my wife has been unable to maintain the allotment. This meant it was down to me to keep it going. At first I wasn’t keen, but now, what a joy! Peace and quiet in the sunshine. Time to reflect, unwind after work. Take a break from the pressures of caring, work, being a father. Sometimes I get a call, ‘what’s taking you so long?’ Digging, I say, but the truth is, I’m just sitting in a chair, watching the butterflies and bees and congratulating myself on what we’ve created.
Working within a charity that strives to adapt to the future, reminds me of the allotment. Over the last year all the staff within my team have worked hard to make sure that what we do fits with the changeable external climate. Sometimes it’s been challenging and like all that digging I’ve wondered whether the challenge will ever be worth the work.
As I’ve sown and nurtured new seeds, the charity has implemented new systems, created projects that support even more carers and reduced our office space. Now the ground is laid and the whole team and organisation are beginning to grow into these new ways of working. There are still issues that need to be dealt with, and like the weeds that pop up and drive me crazy there are sometimes problems, but we manage these together through communicating and being open. We are getting there and working together to ensure that what we do in the future is relevant to the thousands of unpaid carers across Wiltshire.
And like my allotment, I’ve changed. I have learnt to listen to the people I work with, I have learnt to work together to consider the best way to adapt in an ever changing environment. I have also learnt that by doing this, I can uncover skills within those people, and myself that I never knew existed.
So now, when I sit in the chair admiring my allotment, I understand that it wasn’t just down to me. My wife drew pictures, my children helped plant seeds, and I plucked up the courage to ask more experienced growers for tips. What else? Well, I can tell you that manure is much underrated!
Tom Blowers, Support Services Team Leader
The problem with patience.
People always say, aren’t you patient.
Truth is – I have no patience at all.
I get so mad when I can’t get my mum and her wheelchair in to a shop or restaurant, making my feelings known out loud, huffing and puffing and tutting. In this day and age is it really too much to ask for a ramp, or even some assistance? When shops place A-Frames on the pavement, I physically move them and make a big song and dance about it. I refuse to push my mum’s wheelchair in to the road to get by!
And clothes shopping…..well, this does not please me either. My mums in a wheelchair that’s all, she still likes to shop but shops are all about revenue and floor space. Which I understand, of course I do, but it doesn’t help me when I’m trying to push my way through thousands of trousers and tops, hangers getting hitched on me and the chair – urgh! I tend to stick to the same places that have given assistance previously and move rails for me or even provide an assistant to hold the basket when wheelchair trolleys are not provided. But then I lose patience about that, too! Why should my mum only be able to visit certain stores and not be able to just browse anywhere she likes?
Paying for something is another minefield. I know that extra wide tills can’t be left open for wheelchair users, but we cannot go through any other till and often after we’ve struggled with the wonky wheelchair trolley or basket rested on my mums lap (which gets dropped several times) I really have no patience to wait for the wheelchair-less shoppers in front of me – I tut and huff and puff again.
Using a wheelchair and all that that encompasses is not easy. And we are not yet a country which embraces accessibility. A ramp can cost as little as thirty pounds. Surely shop and cafe owners would want to open their doors to everyone?
My mum is forever telling me to calm down, stop getting moody. Be more patient, she says.
Actually when I think about it, I have no patience with many things, at all.
Is it anger for my mum being in a chair, frustration at having to deal with stupid people, or the lack of empathy from businesses? Or is it simply that I have always been this way, in which case shops and stupid people of the UK beware!
Kate Grant. Impatient carer
I worry about stuff.
I worry if little E is going to be ok on her first day at school. If the chicken has been cooked properly. If people will judge me by the fact that I rarely hoover under or behind things. If I will have enough money to go on holiday. I worry that too many children in the world suffer abuse. If I am a good enough friend. If the cake is too dry. If the baby penguin will find its dad and survive the winter. If the fridge will hold out for just a bit longer. If my mum is ok.
We all worry about stuff. Some of it’s about the things we can’t control, some of it doesn’t matter to anyone but you and you might want to give yourself a stern talking to, but what happens when you not only have to worry about your stuff, but you have to worry about someone else’s too? Someone you care about. What happens when it’s really important stuff like giving medication, making sure they have enough food in the house, organising hospital and doctor appointments, helping them get out and about, and into bed; bathing, benefits, finances and frustrations? Convincing them it’s ok. They are ok. What happens when you have a job and you don’t know how you can fit their stuff into your own without yours falling apart?
3 in 5 of us will become a carer at some point in our lives. Birth, death, a diagnosis, accident, or old age – there are many reasons why we might end up looking after someone. We will be doing what anybody would do in that situation. Right? We will be caring for someone.
Here in the UK, 6,000 people begin that journey every day. This Carers Week let’s give a thought to them. Let’s think about the stuff they will have worry about, deal with, have to learn, fight, find the time for. Who worries about them?
Here at Carer Support Wiltshire we provide support, information and advice to carers in Wiltshire. There are organisations like us all around the UK working to help build carer friendly communities where everyone feels supported to look after their family and friends and are recognised as individuals with needs of their own.
If you know someone who is looking after a loved one, check they are ok. Tell them, if they don’t already know that there is support out there.
If you live in Wiltshire and would like more information on the support available call 0800 181 4118.
You can find out more about Carers Week here: http://www.carersweek.org/
Jules Stanbridge, Communications Manager, Carer Support Wiltshire
Are you new to caring – or perhaps looking down the line a little and thinking that’s coming my way?
First of all remember, caring is something that is to be celebrated, enjoyed and respected. Too often we can focus on the pressures and hear only the bad news stories – that brings us all down and encourages a culture of ‘avoidance’. So, let’s turn the conversation on its head and together build a culture that celebrates and values caring.
Start the talking:
With yourself, with your closest family, with the people you will help care for, your wider family, and neighbours and friends.
It’s never easy – people don’t want to ‘wash their linen’ in public; people feel their pride is at stake; they don’t want to be disempowered. But if early on people learn to share small tasks, (mowing the lawn, doing shopping, putting out the bins), then the giving and accepting of care is just more natural and not unusual.
Putting the house in order
Nobody likes forward planning – not even the lawyers among us – but it is really important to lead from the front. You can set up financial and health and well-being plans for yourself if you take the lead and do it for yourself then some of the harder conversations with the people who may need care in future become easier. Check out www.gov.uk/power-of-attorney/overview.
So we need to get our heads around the assumption that people have capacity, including to make unwise decisions. Though some people may need more help than others in understanding the consequences of that. And this is where those difficult conversations bear fruit because you know what mum would want in this situation.
Put yourself first
Remember carers give – that’s what they do, but you must be prepared to put yourself first and take care of your own health, and wellbeing – it’s a fundamental rule. First stop tell your GP that you are a carer – it should open the doors to more personalised care for you. Second stop put your time and energy into maintaining relationships and interests outside your caring role. No ifs and buts – it’s vital.
Check out the help
There’s help out there – go online and you’ll find tons. A useful starting point is your local carers’ centre where you can find out more about your rights to benefits, health and care services, tax breaks as well as practical support such as training, support and breaks. They’ll be able to tell you more about the rapidly growing number of practical aids that can help you care too. Find out how we can help here.
Know the signs of abuse, neglect and exploitation
You are on the front line of protection against abuse and neglect, as well as financial exploitation of loved ones. Be knowledgeable about the signs of abuse and exploitation, and know what to do if you are worried.
Working and caring?
You have rights in the workplace – does your employer know that you are caring and working – tell them so they can cut you some slack when you need it.
Consider personal care agreements.
Caring often requires a financial sacrifice, especially if work must be cut back or given up. If your loved one wants to provide compensation, you’ll have to be prepared to check out tax questions and consider the potential for family conflict. This is where those early conversations come into their own and it’s worth getting an agreement to spell out terms and expectations.
Catharine Hurford, Chief Executive, Carer Support Wiltshire