Support for carers – 4 things to consider to help you care effectively

Support for carers – 4 things to consider to help you care effectively

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.

Pic of man insisting on helping a person who uses is sticks and is carrying a bag, the dark side of helping

 

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.

Pic of a carer's balance account of inner resources getting low and people offering to help

It’s important to keep your balance account of inner resources topped up.

 

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!’

 

Pic of person trying to buy their new self-identity and sales person telling them it's free out there in the world

Finding your sense of self again isn’t like buying something. You have to live your life to discover your new identity.

 

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.

Pic of support for carers 4 things to consider in the caring role

Support for carers – 4 things for carers to consider

 

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 serious health issue, which may be a serious illness or injury or chronic illness, or are caring for someone who is, and would like support for yourself, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although this blog is written in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

Dealing with anger as a carer so you don’t end up operating from the dark side of helping

Dealing with anger as a carer so you don’t end up operating from the dark side of helping

Dealing with anger as a carer of someone with a serious health issue can be really tough. You may also be dealing with rejection from them, feel crap about the situation generally but also genuinely wondering what you can to help and how to manage the situation.

We can be overloaded sometimes with the anger, rejection and unpleasant feelings that we react badly and end up in the dark side of helping. You don’t want to act in this way, but with all the stress you are under, it is understandable that it happens.

You want to find ways to not get so angry at your loved one’s anger over their health situation. This third post in the series on the dark side of helping deals with that. It focuses on you the supporter, your needs and some things to keep in mind as you are on this journey to support effectively rather than operate from the dark side of helping.

Pic of woman holding on to someone else's anger, dropping her own wellness and moving towards the dark side of helping

The potential impact of holding on to someone else’s anger

 

It’s important because you may not always get much recognition, if any, for what you do and what you are going through. But your experience is just as valid and it’s important you receive support too.

I am picking up where we left off at the second post where I wrote about the process a person with a serious health issue goes through when realising what they are no longer capable of doing, and the reasons they may not want to accept your help. As I said in first post, helping others is a good thing and recognised as being good for our mental health (Mental Health Foundation, 2018; Psychology Today, 2018; NPR, 2018). Yet there are times when providing the help doesn’t fulfil the helper’s original intentions to help, nor help the person it is meant to. This blog series is exploring that situation. The primary audience are those of us in a caring role – the carer, spouse, another family member, friend, colleague. I am using the term supporter to reflect that role.

If you are coming across this series for the first time, my aim is to share my learning from having operated from the dark side of helping, not to judge. Also, to raise awareness so you can make mindful choices of when to offer your help and when not to.

Dealing with the anger of the person who has a #serioushealthissue and you are helping is not easy. Read 4 things you can do to lessen the anger’s impact on you. #carer #caring tell a friend

 

Dealing with anger as a carer

 

During this time, you may feel your help could make their life easier, but they just won’t accept it even though it’s based on good intentions. So, you feel rejected. It can feel like you are constantly being pushed away and after a time there is only so much rejection you can take. This is tough. You are doing the best you can in a tough situation neither of you wanted to be in.

What can be happening is the person you are supporting could be holding a lot of anger over what has happened to them. And frustration, and grief. It can be so much to hold, they try to get rid of some of it by giving it to others through their reactions and lashing out.

When someone is #angry with the impact of their #serioushealthissue their #anger can sometimes be covering the #grief they feel for what they have lost. #carer #caring tell a friend

 

You don’t have to hold their anger or grief for them. That won’t help you in dealing with anger as a carer or to support someone effectively. If you hold someone’s anger, grief, frustration, whatever, you can end up draining your inner resources to deal with the situation. You can end up in a vicious cycle of you both throwing your anger back and forth at one another. Which in turn can lead to the type of resentment mentioned above.

Instead, you can do the following to support the person.

 

Demonstrate empathy

 

Demonstrate empathy rather than sympathy for the person. They are two different abilities and people can confuse them. It’s important not to do that in this case.

Empathy is the ‘ability to identify with or understand the perspective, experiences, or motivations of another individual and to comprehend and share another individual’s emotional state.’

Sympathy is a ‘feeling of pity or sorrow for the distress of another; commiseration’.

Some people say you cannot experience true empathy if you haven’t had the same experience as the other person. Given that you don’t often have the same experience as another, what you can do is remember a time or situation in your life when you experienced similar enough feelings.

You don’t need to mention the situation you experienced or say very much. Empathy doesn’t have to be verbal. Sometimes you only have to get in touch with the feelings you felt at that time which are similar to the what the person you are supporting is feeling now. Often times this is more than good enough.

 

‘Hold the space’ for them

 

This expression is what people who support others – like coaches, therapists, listeners – often use. It means to be in the present moment, being your authentic self, witnessing and allowing what is happening for the other person you are with without judgement.

It’s about using yourself to create a safe space for another to just be and express what they want and need to. Again, holding the space does not have to be verbal.

Here’s a good article that expands on what ‘holding the space’ means.

 

Acknowledge their feelings

 

This entails verbally acknowledging how the other person is feeling. This is really important because it validates their experience, it lets them know that you see and recognise it. You could say:

‘I can see that XYZ is really troubling you.’

‘I can see that you are worried about…’

‘It seems as if you feel that…’

‘Are you feeling…?’

Don’t be surprised if the other person corrects you, that they are not feeling what you said but something else. If they corrected you, that’s actually a good thing because you now have a clearer idea of how they actually are feeling.

Also, we aren’t mind readers and don’t live in other people’s bodies, so we can never truly know how another person is feeling. We may get to a close approximation of it and that’s good enough.

We aren’t mind readers and don’t live in other people’s bodies, so we can never truly know how another person is feeling. Important to remind ourselves of this when we are in the #caring role. #carer #serioushealthissue tell a friend

 

Sometimes acknowledgement is non-verbal. It is simply listening to the other person express themselves and whatever they are feeling even if what they are feeling is very unpleasant or really happy.

Acknowledgement of this kind is not about telling a story when you experienced similar feelings or someone else you know has. Unless of course the person has expressly asked you for such information. Acknowledgement is active witnessing of the person’s experience.

 

Acknowledge the impact on you and the both of you

 

At times it is appropriate to highlight the impact the situation and their anger is having on you and that you are doing your best. This may not be appropriate every time. You have to learn to judge when it is. You may make a mistake from time to time as you are figuring that out and that can help you learn what works and what doesn’t.

From my experience as a carer, I learned it is when the other person may be upset but it is not at the level where they are not receptive to what you have to say. I have also found there may be a pause and they look you in the eye. When they do that, they are seeking connection. At this point it’s a judgement call as to what you say.

If you feel it is appropriate to say something about the impact on you, with all the empathy and love you have, you can look back at them and gently say, ‘It’s not easy for you, I can see that. I haven’t found it easy. I’m doing my best.’ Or use words that are comfortable for you and appropriate to your situation. You will notice I include acknowledgement of the other person so it doesn’t come across as a ‘me but not you’ but a ‘me and you’.

Sometimes you may not need to mention the impact on you as it is evident to both of you.

 

dealing with anger as a carer there are 4 things to do

 

Hopefully these four ways of dealing with anger as a carer helps to lessen the negative impact anger can have. Again, it’s important as the supporter you’ve got sources of support where you speak to a trusted person who can acknowledge what you are going through, that your experience is valid, and help you develop strategies to get through it and keep relatively sane.

 

Next time

 

Come back in two weeks when I will continue sharing the strategies you can use to manage tough situations, help effectively and to support yourself.

 

What’s it like for you?

 

What has your experience been like of dealing with anger as a carer? Are these strategies new to you? What other strategies have worked for you? Share your thoughts in the comments below.

If you are living with a serious health issue, which may be a serious illness or injury or chronic illness, or are supporting someone who is, and would like to return to a sense of wellness, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although this blog is written in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

 

What the dark side of helping people who have a serious health issue is like – Part 2

What the dark side of helping people who have a serious health issue is like – Part 2

We continue our series on the dark side of helping people affected by illness or injury by talking about the reasons they may not want your offers of help (however well-meaning they are).

As I said in the earlier post, helping others is a good thing and recognised as being good for us (Mental Health Foundation, 2018; Psychology Today, 2018; NPR, 2018).

Yet there are times when providing the help doesn’t fulfil the helper’s original intentions to help, nor help the person. This blog series is exploring that situation.

This post will explain the views of people on the receiving end of such help and give some ideas and tips to give you more choices on when to offer and withhold your help. It’s important as relationships you value can end as a result of the dark side of helping. And this is often not your intention when helping someone.

 

Pic of man in wheelchair and woman with sticks saying they are going to share their thoughts on helping

 

My aim is to share my learning from having operated at times from the dark side of helping so you can make mindful choices when to offer your help and when not to. Many of us have been there and done it. The important thing is learning from it.

 

What is the dark side of helping?

 

A quick recap – 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 our society feels is a good thing. But the helper as assumed the person being helped needs or wants it. The person being helped hasn’t asked for it, so we don’t know if it is wanted or needed.

 

Pic of man insisting on helping a person who uses is sticks and is carrying a bag, the dark side of helping

 

The impact of the dark side of helping

 

People who get around using a wheelchair, stick or walking frame have often told me it doesn’t feel good to be on the receiving end of this kind of help. They gave four reasons why. These reasons can also apply to people living with invisible illnesses. So have a read to learn what to do to make sure you don’t end up inadvertently wandering in the dark side of helping.

You want to help someone who has a #serioushealthissue #seriousinjury #chronicillness But they don’t want your help. Read the four reasons why here tell a friend

 

Reason 1: It’s an invasion of personal space

 

It some cases it can be when it involves you physically doing something for someone.

 

Reason 2: It can feel demeaning

 

People I’ve spoken said it can come across as if the person helping assumes the person is no longer capable of doing what they are setting out to do because of the illness or injury. To live with people treating you as if you do not have the capability can erode your sense of self-efficacy (your belief in your ability to accomplish a task or succeed in a particular situation), self-esteem and self-worth over time.

As the person helping, you may say that the person is no longer capable of doing that activity. This can go several ways.

Ask yourself how you feel watching the person doing the activity. Are you thinking they can’t do it? Are you worried they will hurt themselves or drop something? Is it taking longer? And you’re busy and don’t have the time to wait for them to finish. Does it feel more laborious to you? Do you think you can do it more quickly or better? These are common reactions and they can often highlight your assumptions, standards, expectations, wants or needs.

If you find yourself feeling this way, that’s ok. Just notice it and you don’t have to act on it. The downside of acting on these feelings is you inadvertently transfer them to the person you are trying to help even if you don’t say anything about how you are feeling. For example, if you help someone because you can’t stand how much effort it is taking them to do what is expected to be a simple task… you get the feeling.

It’s not nice being on the receiving end of that kind of help. It’s difficult to understand. The person may wonder if they have done something wrong. Or be upset because they were trying to exercise their independence. It can also be confusing and uncomfortable when you don’t know the person trying to help you.

If you don’t know the person at all or only a little, ask before you help.

If you know the person and there is a time element to the situation where you both have to be somewhere, or it’s an issue of keeping the person safe (a safeguarding issue), I recommend finding a way to talk about when your help might actually be recommended or necessary. This can be a talk of a more delicate nature and warrants a separate article for another day.

 

Pic of woman having taken over of making tea for a man in a wheelchair

Wanting to try doing things for yourself when living in a changed body.

 

Reason 3: It disempowers the person you are helping

 

The person you are supporting may no longer be capable of doing the activity how they used to do it pre-illness/injury. But they may be able to find a new way of doing it. This a key process for people living in a changed body to go through. It fosters adaptability and flexibility which are key qualities they need to deal with the ongoing impact of their illness/injury, to look after themselves, and regain a quality of life.

When you rush in to help someone without asking, it’s focusing on what the person cannot do and that isn’t empowering. When you support someone to figure things out, you are focusing on the possibilities that exist for them and what they can do. They may not always be sure what they can do, so you can give some suggestions (if they are open to them and you may need to ask them that too). You can also give them your moral support and belief in them, both which can be incredibly empowering for the person.

This kind of help on your part fosters a reciprocal partnership. It strengthens the person’s resolve that they can figure out a new way to do things, what they can do on their own and what they cannot. They may make a mess, drop things, and take a long time. They will express frustration. But they learn, and it can be empowering to find a new way of doing things. It feeds their sense of self-worth. So voluntary help can actually prevent people from going through this helpful process.

When you support someone with a #serioushealthissue to figure things out for themselves, you are focusing on the possibilities that exist for them and what they can do #empowerment #inclusivity #disability tell a friend

 

Reason 4: It takes away control

 

The person may actually no longer have the capability to do what they want. But for some people they have to go through the process of figuring this out for themselves. It will contain more meaning for them than someone telling them they are no longer capable. Even though it is hard for them to digest this realisation and for you to witness.

They retain a sense of control in making the decision knowing what they are capable of and not. When someone tells you verbally or through their actions that you are not capable, it highlights a difference between you and the person/people telling you. Your sense of belonging can feel threatened. It feels like you can’t decide for yourself anymore. You can feel ‘less than’. This can erode your sense of self-efficacy and self-esteem as mentioned above.

Over the long-term, it can foster resentment for both people in the relationship:

Supporter: I resent you because you can no longer do what you used to do and now I have to do it.

Person being helped: I resent you having to do things for me.

This resentment can result in malfunctioning co-dependent relationships.

This realisation process of learning what one is capable or not capable of is tough because it involves the person acknowledging the loss of capability due to their illness or injury. And they may not be ready to do that just yet, particularly if they (and you) really valued the lost capability. It can take time.

And during this time, the greatest thing you can be doing for yourself is to make sure you have support and time out (as far as that is possible, I know it’s tough at times to have time out). This will enable you to top up your inner resources of patience, strength and whatever else you need to keep going.

 

Pic of a woman talking to another woman to get some support

Getting support for yourself when you are supporting another is important.

 

Next time

 

Come back in two weeks where I will share the strategies you can use to manage tough situations, help effectively and to support yourself.

 

What’s it like for you?

 

What has your experience of supporting someone or receiving help taught you about the dark side of helping? What advice would you share with others to make sure they didn’t operate from that place? Share your thoughts in the comments below.

If you are living with a serious health issue, which may be a serious illness or injury or chronic illness, or are supporting someone who is, and would like to return to a sense of wellness, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although I wrote this blog in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

 

What the dark side of helping people who have a serious health issue is like – Part 1

What the dark side of helping people who have a serious health issue is like – Part 1

The dark side of helping is the theme for the next four blogs. Someone who reads my newsletter and blogs asked me to write about what to do when you are living with a visible disability, someone helps you, but you didn’t ask for their help and don’t want or need it. Others have also told me they experienced this.

Reflecting on that conversation, it occurred to me that this way of helping doesn’t fulfil the helper’s original intentions to help, nor help the person on the receiving end. In fact, the person being helped can feel worse as a result. Hence why I refer to it as the dark side of helping.

In the end I decided to write this blog series for the people who help us – our carer, spouse, another family member, friend, colleague, or a stranger. I’ll refer to you as the supporter.

What I write here builds on what I wrote before about why asking for help is so hard. The issues which can get in the way of asking for help include feeling guilty, the fear of being seen as weak or needy, wanting to feed our sense of self-worth by doing it ourselves, people close to us not wanting to help, not wanting to show how we are different because we can’t do it ourselves, and the difficulty of acknowledging that a change has occurred which means we can’t do things ourselves anymore.

As a supporter, maybe you are aware that there is a dark side of helping. I’m highlighting it as there can be consequences for you and the person you are helping as referred to above. I write this article intending to raise awareness, not judge you.

 

Did you know that there is a dark side of helping? Important to know when we are a #carer, spouse, partner, family member, friend, or colleague. Click here to find out more. #seriousillness #chronicillness #seriousinjury tell a friend

 

This blog series will explain the views of people on the receiving end of such help and offer some ideas and tips to give you more choices on when to offer your help and withhold it. It’s important as relationships you value can end as a result of the dark side of helping. And this is often not your intention when helping someone.

I am also noticing the parallel process of me assuming you want the support being offered in this blog, and that assumption can be part of the dark side of helping, which I will explain more about in a moment. If you continue to read this article, then I assume you are interested in my thoughts on this.

As you read this series of blogs, be gentle with yourself as it can raise some uncomfortable feelings. But also know this, some of what I write about in this article, I have done myself. So, the uncomfortable stuff – many of us have been there and done it. You are not alone. The important thing is learning from it.

 

What is the dark side of helping like?

 

The dark side of helping is when someone helps another, and the person helping hasn’t asked if it’s needed or wanted. It’s a proactive form of help, which is deemed to be a good thing in our society. But it has been assumed; the helper is operating on an assumption.

Pic of man insisting on helping a person who uses is sticks and is carrying a bag, the dark side of helping

 

I am talking about those times when you look at someone doing something and you are not sure if they can do it, you want to protect them, or maybe make their (and your) life easier in some way. Or it somehow feeds your identity of being a good person who helps others. So, you rush in and do whatever it is the person is doing for them. For some people this may include them being insistent that they help the person.

It’s a fine line because if the person is actually falling, spilling boiling water, burning themselves, accidentally setting the house on fire, yes, you do rush in to help.

Some examples of what the dark side of helping looks like:

  • A person in a wheelchair going about making a pot of tea. Their family member, friend, visitor, whomever, says, ‘Oh, don’t worry about it. I’ll get it.’ And takes over making the tea.
  • A person in a wheelchair or who uses a stick or walking frame is doing their shopping at the supermarket, is looking up at some shelves. You walk by them, seeing what they are doing, ask them what they want and say you can get it for them even after they say they are fine. (But actually, they can make their wheelchair go higher to get items out of arm’s reach.)

We often want to help others and are ready to do that. People around us say it is good to help others and we conform to that societal norm. This is not a bad thing. It also makes us feel good to help someone. Findings from research often demonstrate this and as a result encourage us to help others to improve our mental health. (Mental Health Foundation, 2018; Psychology Today, 2018; NPR, 2018)

Regarding this dark side of helping, on the surface our intentions may come from that good place, but below the surface it is at the cost of the person you are helping or wanting to help. Your help doesn’t actually help them in the way they want to be helped, if they want to have help at all.

Picture of an iceberg. Above surface, it's good to help. Below surface, the wise whale asks you if the person wants to be helped.

We often have explicit and implicit intentions when helping people.

 

 

How do you know if you are entering the dark side of helping?

 

Some questions to ask yourself before helping someone is:

  • Am I intending to help this person because they want the help?
  • Am I helping because it makes me feel good or better in some way?

 

When you want to help someone, first ask yourself: Do they want or need my help? Have I asked them? Am I helping them because it makes me feel good or better in some way? #seriousillness #chronicillness #seriousinjury tell a friend

 

If you are unsure that the person wants the help and it would make you feel good to help, then ask them if they want your help.

If they say no, then say ok and move on. There are good reasons for people to say no to offers of help and we will review them in this series.

If they have said they do want help and you can and want to help them, then help!

 

Key learning about the dark side of helping

 

Help that benefits both the person helping and the person receiving help is the thing to aim for.

Picture of man asking person using sticks and carrying a bag if they need help and person replies that she doesn't but will say if she needs help.

Reciprocal help benefits both the giver and the receiver.

 

Next time

 

In two weeks we will explore the reasons why people whose capabilities may be limited by an illness or injury may not welcome offers of help, however well-meaning they are.

 

What’s it like for you?

 

Have you found yourself helping someone but you haven’t asked first if they wanted or needed it? What did you learn from that? Likewise, if you have been on the receiving end of unsolicited help, what was that like for you? Share your experiences in the comments below.

If you are are supporting someone living with a short-term or long-term serious illness or serious injury, or are that person, and would like support for yourself on any of the issues I raised here, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although I wrote this blog in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

How to find a hobby to improve your mental health

How to find a hobby to improve your mental health

A month ago I wrote a blog on the 10 ways in which a hobby can improve your mental health when living with the impact of a serious illness or injury.

But after writing the blog, I thought of something I did not address in it. It was a question put to me by someone living with a neurological condition.

 

How do I find the right hobby for me?

new hobbies after serious health issue

Finding new hobbies after a serious health issue changes your life.

 

Great question! You may not have a hobby or have found the right one for you. You could be busy with the routine of your health issue, work, family and/or life in general. Which is normal and happens to a lot of people.

But maybe you are at the stage that you like to find a hobby to give yourself a break from illness, family, work, whatever. Or you may want an activity just for yourself or to restore a sense of normality in your life.

So in this post I am going to continue the theme of how a hobby improves mental health by answering that question.

 

How do you find the right hobby for you?

 

First, a recap from the previous blog the 10 way in which hobbies improve your mental health and quality of life.

 

hobbies improve mental health

10 ways hobbies can improve your mental health

 

These 10 ways provide an insight into the criteria or questions you can ask yourself when selecting a new hobby. Not all may be a requirement for you. Nor are they all a requirement for a hobby.

 

1. You are interested in the hobby

 

The hobby has a decent chance of holding your attention and focus. This is particularly important if you are hoping for the hobby to provide a distraction from your symptoms for a time.

 

2. You can use existing skills which you value using

 

This can be a powerful reminder of your existing strengths, which we can sometimes forget about when we are in a difficult place. For example, I enjoy research because it allows me to use my brain in a way I value. A new hobby I picked up whilst seriously ill was genealogical research. Another advantage of that hobby was I wasn’t required to move too much, which was good because I couldn’t due to the illness.

 

3. You will be able to physically do the hobby or adapt your approach to it

 

Sometimes after a serious health issue, our bodies can permanently change and we may no longer be able to do previous activities or we must adapt how we do them. For example, a friend had a heart attack and due to having angina as a result, returning to their hobby of running was not possible. They chose a new hobby of photography as it would allow them to walk whilst taking photos.

 

4. The hobby can provide an opportunity to learn and get better

 

Learning a new skill or developing an existing skill further provides a sense of satisfaction and mastery, which contributes to improved mental health and quality of life.

 

5. There is an opportunity to achieve something

 

And do you value that kind of achievement? For example, knitting can result in a finished product like a scarf, hat, jumper or blanket that you can use or give as a gift to someone.

 

6. The hobby provides a sense of belonging

 

Does the hobby provide an opportunity to socialise with others in person? Or to connect virtually with people? Which do you prefer? As I said in the previous blog on hobbies, being with others fosters a sense of belonging, which can be very powerful as it reduces the isolation that can result from having a serious health issue.

However, you may want a hobby that allows you to be by yourself and that is ok too.

Sometimes this nature of belonging is looking after something or someone else, whether it be a child, plants, or a pet. Whatever it is, it depends on you to survive and flourish. The process of helping in this way can be very affirming of you and your abilities. This is powerful as often after the onset of a serious health issue, it is common to lose our sense of self-worth as we feel we cannot contribute or look after others as we used to.

 

7. Is the activity something you think you will enjoy doing?

 

When we enjoy something, we often relax. And relaxation reduces stress. A win-win all around.

hobbies improve our mental health

The impact of hobbies on our mental health is a virtuous circle.

 

8. What meaning does the hobby give you?

 

By ‘meaning’ I mean you value what the activity has to offer whatever that is, such as the activity itself, being with people, helping others, creating or collecting something, increasing your knowledge, playing a team game with others, just having fun or something else. Or maybe the hobby allows you to live a value of yours, something that is important to you. For example, baking could be expressing a value of creativity, or community if you share your bakes with others.

 

9. Does the hobby restore a sense of normality to your life?

 

A hobby can provide routine like ‘every Wednesday evening from April through March I go kayaking’ and this fosters a sense of normality.

 

10. Consider what you enjoyed doing in the past, what you are good at and passionate about

 

What we enjoyed doing in the past, and our existing strengths and passions can be the source for new hobbies. Even skills we use at work and our jobs can be used in a hobby.

Hobbies we had as a child may capture our interest again. Or we may adapt childhood interests to what we want to do now. For example, maybe you used to sew clothes but now you want to make quilts.

If you are skilled at organising events, many charities and local neighbourhood initiatives may require this skill. If you are an accountant, maybe you do the accounts for free for a local club or charity or bring that skill to a non-executive position of an organisation. You can channel a skill you use at work towards a cause you find meaningful.

If you are passionate about nature, keeping bees or letting a beekeeper keep hives in your garden, bird watching, or creating homes for hedgehogs in your garden can all become hobbies.

It might be possible to adapt your approach to previous hobbies so you can still enjoy them. For example, if you now have limited mobility and gardening was a favourite pastime, raised outdoor beds or potting and growing plants indoors could still allow you to enjoy the hobby.

Sometimes a hobby can grow out of another hobby. For example, a friend developed a passion for Word War I history whilst doing genealogical research. He has since contributed to his local council’s initiative to commemorate those from the area who fought and died in the war, and may even start leading tours of the battlefields in France.

So based on the 10 ways hobbies improve your mental health and quality of life, these 10 criteria and questions can be your starting point in finding new hobbies. Have fun trying out new activities in your search and when you find your hobby, share it here. I’d love to know what you choose and how you are finding it.

 

What’s it like for you?

 

Did you pick up any new hobbies as a result of your health issue? What influenced your choice? And how is it helping to improve your mental health and quality of life? Share below as your comment could help someone else.

If you are living with a chronic illness or the after effects of a serious illness, or are caring for someone who is and would like support to enhance your sense of emotional wellness, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Pass it forward

 

Although this blog is written in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to share it with the world, share it using the icons below.

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened and whether you have to, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more.

© Copyright Barbara Babcock 2017

 

How to create dependency on the NHS – Don’t give patients information

How to create dependency on the NHS – Don’t give patients information

Dependency on the NHS can (unintentionally) be fostered at the start of the patient journey. How? you may ask.

  • By providing little information about a patient’s diagnosis and prognosis to them at the point of diagnosis and only providing it verbally. And communicating that diagnosis via an unscheduled phone call or letter.
  • By providing little information about possible treatment plans, and the pros and cons of them.
  • Not signposting patients to relevant information, charities and organisations which can provide the information and support they may need going forwards.
  • Writing letters summarising what was discussed at appointments and treatment plans in medical speak, a language the patient does not understand.

 

In my work with the Transverse Myelitis Society, I hear the above happening a lot. I have experienced it as a patient (got the name of my diagnosis in a letter; the name of the diagnosis opens a door to getting more info).

People are left to learn what it is they do not know during a stressful time. The not knowing and associated uncertainty can increase already high anxiety levels. It can feel like a battle trying to get info, and then determine if the info is relevant to you.

information reduces anxiety

When information would help you understand and reduce anxiety.

 

I’ve seen this foster a sense of abandonment among patients. They feel so let down by their healthcare providers. It can also foster distrust. If a patient feels they cannot trust their consultant, GP, or other healthcare professional to tell them what they need to know, then is this patient going to follow their recommendations?

A patient can end up becoming reliant on the NHS professionals to do things for them. That reliance breeds expectation that that will happen. That expectation can then be passed on to others (parent to child, friend to friend, etc.).

When the expectation cannot be met due to lack of money, resources, competence, services not being joined up, whatever, then you have patients potentially upset with their treatment and care and potentially less likely to follow their medication regime, exercise recommendations, etc. Their health issues may worsen as a result. They return to the NHS for treatment. The cycle continues.

 

Lack of information is an issue for neurology patients

 

Lack of information has been identified as an issue in the Neurological Alliance’s Patient Experience Survey Falling Short: How has neurology patient experience changed since 2014?

  • 41% believed that communication of their diagnosis should have been done more appropriately or was not at all appropriate.
  • 45% were unsatisfied with information they have received about their condition
  • 46% were dissatisfied with information they have received about their care and treatment options
  • 53% were dissatisfied with signposting they had received from healthcare professionals to sources of voluntary sector support. A lack of information, particularly at the time of diagnosis, was a common theme in the survey.

I am sure many other health conditions are similarly affected. Not providing information to empower the patient is still happening at a time when the NHS can least afford it, and there are calls for patient-centred care and empowering the patient to be a true partner in their treatment and care.

 

Information is power

 

We say that information is power. And it sure is when you are diagnosed with a serious illness, chronic illness, or have a serious injury. When you get ill or have a bad accident, it often happens unexpectedly. It is not something you search for; you don’t want to get ill or badly hurt. So there is a very strong element of you don’t know what you don’t know.

If the people in the know don’t give you the information you need to know, it is that much more difficult for you to ask questions let alone the ‘right’ questions, advocate for your needs, be a part of decisions regarding your treatment and care, and find non-medical sources of support and information. You are not empowered.

information is power

It’s hard to know what to do when there is a lack of information.

 

Empowering the patient requires action by the NHS, charities and the patient

 

NHS

Please write letters summarising discussions had during appointments in plain English. A neurologist I once met said such a letter is meant to be the ‘care plan’ when he was asked why care planning was so poor in neurology (85% of respondents to the Neurological Alliance’s Patient Experience Survey said they have not received a care plan). A care plan is of no use to me as the patient if I cannot understand it.

If the doctor’s letters are meant to be the ‘care plan’, then they can’t be one dimensional, i.e. only about the medical side of things. People are not one dimensional and so our care cannot be either.

Make it easy for healthcare professionals to provide patients with information of national and local organisations which can support their needs. Develop a national database of such organisations available to all NHS trusts. Set it up so healthcare professionals can add information about local organisations.

Until such a database is developed, make it routine in your ward/practice and during appointments to ask what other non-medical support patients require and signpost them to appropriate NHS and non-NHS services and organisations.

Explain to the patient how your local NHS trust/hospital/GP surgery works in relation to their needs. When you enter an NHS system as a patient, you don’t know the in’s and out’s of how it works. Here’s a recent personal example. A doctor initiated on the same day two appointments (in different clinics) for me even though one of them has to follow the other. The reason? The second appointment is in a clinic that has longer wait times than the first appointment. By the time the date for the second appointment comes through, it should occur not long after I have had the first appointment. This was a consultant using his knowledge of how the system works for my benefit. (His care was compassionate and patient-centred! Yay @UCLH!)

In my experience with a serious illness hospital in 2008, the neurologist looking after my care knew their stuff. They were good. And nice. But they didn’t tell me much about the illness and what to expect in recovery. I had to figure out the majority on my own. So this is a gentle reminder to give your patients information verbally and in writing.

 

Charities

Produce information that your members or beneficiaries would find useful. Ask them what information they need. In fact, they may want to help you produce it. Have relevant healthcare professionals review it for accuracy. Schedule a date for when you will review the information in the future to ensure it is still up to date and accurate. The Information Standard guidelines can help you produce good quality information.

Develop relationships with healthcare professionals and hospitals as they are the conduit to getting your information to the person who needs it. This takes time. However, it can go a long way towards helping someone newly diagnosed get the support they need sooner rather than later. And as a charity, this is often a key reason why you exist.

 

Patients

Google is a great gateway to information about your condition from expert sources and your peers. Keep in mind that what may seem like an ‘expert source’ may not actually be one. If you are not sure, make a note of the information you came across and its source and ask a suitably qualified professional at your next appointment or the charity who supports people with your condition.

Your peers can be a great resource for information. However, please do not make changes to your medical routine without speaking to your doctor first. Your peers may be experts in their condition as it relates to them, but they are not experts in how the condition affects you. And sometimes, the information they provide can be incorrect so they also cannot be the only source of information.

If you can, take your partner, another family member or friend to your appointments. They can be your second pair of ears and take notes for you. Thus freeing you up to ask questions and listen. Also, your family member or friend may remind you to ask the doctor about certain things you haven’t yet asked.

Prepare for your appointments. Keep a note of questions you and your family has about how your condition impacts you. Keep a diary of how you are affected. This helps the healthcare professional to help you. That is key. In the world of managing our health, the doctor-patient relationship is a two-way street. As much as we need them to give us information, we need to give them information too. Rather than have dependency on the NHS, it’s about sharing the dependency on the NHS, charities and patients.

empowered patient patient-centred care

Two way street = Patient helping the doctor to help them and the doctor helping the patient.

 

What’s it like for you?

 

What has your experience been like learning about your health issue and how to manage it? What support did you get from healthcare professionals and charities?

If you are living with a chronic illness or the after effects of a serious illness, or are caring for someone who is and would like support to enhance your sense of emotional wellness, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Pass it forward

 

Although this blog is written in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to share it with the world, share it using the icons below.

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened and whether you have to, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more.

© Copyright Barbara Babcock 2017

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