There is good support for carers out there, but I’ve found there are some things which aren’t always explicitly talked about. And if carers knew about them, which are often of a psychological nature, they would realise what they are experiencing is normal. This awareness would also reduce the chances of the carer operating from the dark side of helping.
So I am going to share 4 things to consider as a carer to help you in your caring role. (There is more I am sure, but this is a good enough start.) This is the last post in a blog series about the dark side of helping people whose capabilities are limited by illness or injury. It is meant to support those of you in a caring role whether you are a spouse, partner, another family member, friend, colleague.
But a quick recap on what the dark side of helping is
In the first post, I explained that the dark side of helping is when someone helps another, and the person helping hasn’t asked if it’s needed. It’s a proactive form of help, which is deemed to be a good thing in our society. But it has been assumed on the part of the helper that the person being helped needs or wants it. The person being helped hasn’t asked for it, so it may not be wanted or needed.
In the second post, I wrote about the impact the dark side of helping has on the people on the receiving end of such help, their views of it and the reasons for that. The third post focused on proactive strategies you can use to manage situations where you are holding on to their anger and getting angry yourself.
So let’s move on to the four phenomena which happen but aren’t often talked about and what it means for you as the carer.
Support for carers 1 – Being able to withstand difference to support effectively
So much is required of you to enable you to support someone effectively. It can take a lot of patience on your part. It is so important that you have good support from people you trust, respite breaks when you can, and your own life. This all enables you to top of your inner-resources so you can stay with and keep going without wearing yourself out.
If you’ve known the person you are caring for for years, it can be very hard to see them so different. This is a big test for some. Can you withstand standing before this difference that feels uncomfortable for you? Can you give yourself the time to become more comfortable with it? Support from others can help you do that.
Support for carers 2 – Being able to notice and sit with your discomfort and anxiety
Sometimes when we are very uncomfortable with a person or situation which is so different from what we once knew, it can highlight the anxieties we consciously or unconsciously hold about the difference. For example, seeing someone formerly physically active who no longer is due to an illness or injury. We can feel (even on an unconscious level), ‘That can be me one day,’ and that can be hard for some people to experience. Or you could be thinking, ‘I didn’t sign up for this. This wasn’t in my life plan!’
It can also highlight our assumptions of illness, health, disability and capabilities. For example, some in society think that if you have a disability, you are no longer capable, or being ill is somehow a bad thing. But others feel that a disability means being differently abled. (I opt for the latter as it is the realistic scenario. Just because your body doesn’t work like other people’s, it doesn’t mean you are deficient in any way. You have the same dreams, hopes and fears as everyone does. You have a difference and finding ways to adapt your approach to do what you want in life is key.)
When we help from a place of anxiety and assumptions which discount the abilities and desires of the person we are helping, we often do it to calm our anxiety and reduce our stress levels.
That ends up taking precedence over the needs of the person we are helping rather than there being a reciprocal relationship where the needs of both people are met.
To help effectively we have to learn to recognise when our anxiety and unhelpful assumptions are triggered and be able to hold that whilst helping people in the way they wish to be helped.To help effectively we have to learn to recognise when our anxiety and unhelpful assumptions are triggered and be able to hold that whilst helping people in the way they wish to be helped. tell a friend
Support for carers 3 – Getting to know the ‘new’ person, getting to know yourself now
Linked to this, you may feel that they are a different person. They are to some extent because of the all the change they are dealing with. Yet they are still the same person they were before the illness or injury. You know that too. It can feel like a contradiction and I’ll explain why.When a loved one has a life-changing #seriousillness or injury they often feel like they don’t know themselves anymore. This is normal. Read the reasons why here. tell a friend
The person who has become ill or injured is going through a process of re-defining themselves.
They may not be fully aware they are going through this process. It involves figuring out who they are now as a result of the illness/injury and who and what they want to become. That unfolds as they go about living their life with the consequences of the illness or injury, figuring out what they are capable of now, etc. And this is the only way to do it. It’s not a process where you arrive at an end destination, find your new self, put it on and go, ‘Ta da! Here I am world! The NEW ME!’
Also, many of their personal traits, characteristics, likes, dislikes, mannerisms, etc. that existed before the illness/injury are still there. This also needs to be integrated with who they are becoming.
This process of redefining themselves is about integrating the person they were before with the person they are becoming so they can function in their life in the way they want.
It is no small psychological effort. We aren’t given a handbook when we get ill or injured on how to go through this process.
As the supporter, you too are going through a similar process. Your life and relationship are also different after the person’s illness/injury.
When you are supporting someone, particularly if you live with them, there are two of you going through this process at the same time (more or less) in addition to dealing with the realities of the person’s illness or injury. That’s a lot.
And if you have children, they too are going through a variation of this. Everyone is evolving and adjusting, trying to figure things out. It’s no wonder there can be an upheaval in family relationships after an illness/injury/disability enters the family.
Support for carers 4 – Giving new meaning to the relationship
The person who has acquired an illness or injury may no longer be able to participate in activities that were a key feature of your relationship – taking turns on doing everyday activities like running errands, cleaning or mowing the lawn, cuddling together on the couch on a Friday night, sex, spending a leisurely weekend afternoon in a pub drinking, walking up a mountain, etc.
You may be wondering what does the relationship consist of now? What gives it meaning?
The relationship can feel like it is in a very uncertain no-man’s land. Not everyone can exist in such a place and travel though it to come to a new place regarding the relationship. It’s important that you both find ways to talk about it with each other and you both have a variety of support (keep in mind that it’s very hard to be everything to one person). Working together to adapt how you approach activities you used to do together and finding new activities can help ensure your relationship stays on a path you are both satisfied with.
And more support for carers…
Finally, whilst writing this series, I came across this report called ‘Good and bad help: How purpose and confidence transform lives’. It echoes ideas I have been sharing across this series on the dark side of helping.
This report focuses on providing good help at the organisational level: NHS services, social care, or help in the community. Yet the ideas contained within can be applied at the individual level. Have a read! It’s very good.
The report was published by Nesta, a UK charity which is an innovation foundation working on the big challenges of our time in partnership with governments, businesses and charities. I’m including it here on my own initiative, Nesta hasn’t asked me to. But they are aware I am mentioning it.
What’s it like for you?
Do you recognise these four phenomena? What has your experience been like in dealing with them? Is there any other support for carers you found helpful? Share your thoughts in the comments below.
If you are living with a challenging health issue or caring for someone who is, and would like support on any of the issues discussed here, have a look at how we can work together and get in touch for a free no obligation consultation.
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© Copyright Barbara Babcock 2018