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Welcome to the Carers’ Hearts blog post.

This week I am exploring what the term ‘Carers or Caregivers Stress Syndrome’ means, why it is important to recognise its effect on your physical and psychological wellbeing and provide some activities and exercises to manage it.

I came across the term ‘Caregivers Stress Syndrome’ while doing some research for another topic last year. It caught my eye as it seems quite dramatic and I immediately thought it related to a specific medical condition that resulted or developed as a result of the caring role. However, I can’t find a medical reference for the term, but have found several articles, mainly from the USA, relating to the term and similar references such as ‘Carers Burnout’.

Following further research and reading about the term, it relates to the negative physical, emotional and psychological impact of the unpaid and working caring roles, particularly when someone experiences them over an extended period. Although I have covered several aspects of this topic in other posts over the last six months, the timing felt right to further explore the main elements which underpin it, as it is likely that more and more unpaid and working carers are going to be suffering as a result of the added challenges of caring in a pandemic.

In the caring context, I have already mentioned that this term does not refer to a medical condition, such as a disease. However, I believe it does reflect that there can be the presence of physical and psychological problems, that can then lead to an overarching mental condition, such as depression.

In the next section I will explore why carers can experience high levels of anxiety and stress and the implications for this. However, firstly I will set out what are some of the conditions or situations that can lead to carers developing stress in the first place.

I could write 3000 plus words on the different impact factors that contribute to the development of stress, anxiety and depression in the caring role and still not be able to explore all of them! So, for the purposes of this post, I will mention just a few and will revisit this whole topic in a workshop for the website in a few months’ time. If you would like to be notified when that has been launched, please drop us a line at enquiries@carershearts.org.

The first area is how carers view themselves in the caring role and what boundaries they have relating to their various identities and their expectations they put on themselves as unpaid carers.

1. I have mentioned this topic many times and it relates to whether or not someone carrying out the unpaid caring role, and that could be only a few hours a week or even remotely, self-identifies themselves as a caregiver. There are far too many reasons why people don’t self-identify as carers, but this is one of the key contributors to stress and anxiety building up. This is an area I have and continue to research as it is key to dismantling the fortresses carers build around themselves, which ultimately denies them opportunities to access potential practical, financial and emotional support, all of which can make life a little less stressful.

2. The second topic also relates to identity, but specifically around the boundaries between identities, such as caregiver v wife; caregiver v parent or caregiver v daughter and how that impacts on an individual’s sense of self-identity. Although, if you are in an intense caring role, you are unlikely to be able to create clear and distinct boundaries between your caring identity and your self-identity, the absence of any distinction between the two at all, can result in a masking (Broady, 2015) of the self-identity by a stronger caring identity, which can lead to a number of problems, including mental health issues, such as depression.

3. The last topic in this section relates to the absence of realistic expectations caregivers can have, not only on the role itself, but also, and probably more importantly, on how much they need to do and take responsibility for. I have shared in several posts that this something I had a significant problem with when I first took on the role of unpaid carer and struggled with until about the last six or seven months. I am driven by a need to keep people safe, that is probably why I ended up being a police officer for over two decades and then naturally morphed into the role of an unpaid carer. However, as much as I researched and thought about what I would need to do, it never crossed my mind that I might NOT actually be able to do it all myself!

The next set of examples of situations that can increase levels of stress and anxiety are more self-explanatory, such as:

Not seeking professional support and advice.

Social isolation and lacking the opportunity, or will, to discuss difficult thoughts and feelings with friends, family members or professionals.

Reduction in physical health, due to poor diet and nutrition, lack of exercise, poor sleep, etc.

Poor psychological health, due to lack of mental stimulation, not recognising and managing difficult negative thoughts, feelings and emotions etc.

Lack of opportunities to focus on your own needs and goals, due to lack of any kind of break or longer periods of respite.

So why is it important to reduce or positively manage stress triggers?

Short, intense periods of stress are not thought to be harmful, unless whatever is chasing you happens to catch you, of course! Known as the fight or flight response, it emanates from the oldest parts of our brains and was developed in early homo sapiens to ensure that they survived to be able to procreate, by not ending up as something’s lunch!

Fortunately for us, in most cases this hormonal response is no longer required. However, with the advancement of modern civilisations, somehow the triggers for the need for a significant physical response due to extreme danger, have now been reduced down to nearly everything in daily life. Pressures in the workplace, school and at home, and more recently worrying about larger, more significant events such as the global economy, climate change and the pandemic, can result in the almost constant triggering of these old, neuro responses.

So, by adding onto the already pre-existing levels of societal and self-induced stress, the addition of more emotional, psychological, financial and physical demands of the unpaid caring role, you have the perfect storm to deliver, constant high levels of stress and anxiety and that will eventually take its toll.

The consequences of stress and anxiety are often spoken about on TV shows aimed at getting us fitter and healthier. However, as a result of constantly seeing and hearing the same advice, we can become immune to the often, tragic outcomes they are trying to warn us about; heart attacks, strokes and shortened life expectancy due to injury or illnesses, such as cancer.

Here are a few of the symptoms associated with stress and anxiety (links to some additional resources in the notes below). If you recognise any or all of these symptoms in yourself, then we highly recommend that you seek medical advice as soon as possible.

Some of the most common symptoms can be:

  • a churning feeling in your stomach
  • feeling light-headed or dizzy
  • pins and needles
  • feeling restless or unable to sit still
  • headaches, backache or other aches and pains
  • faster breathing
  • a fast, thumping or irregular heartbeat
  • sweating or hot flushes
  • problems sleeping

In addition to the signs and symptoms above, living with high levels of unchecked stress and anxiety can also lead to significant mental health problems such as severe depression. According to the Office of National Statistics as many as one in five people (19.2%) in the UK, are currently experiencing moderate or severe levels of depression (June 2020), compared to one in ten individuals (9.7%) recorded between July 2019 and March 2020.

Obviously, the pandemic is going to significantly contribute to an increase in the overall population experiencing more intense and longer periods of stress and anxiety. However, unpaid carers are already known to be at increased risk of suffering from stress and depression, so it is even more important that anyone taking on or carrying out the unpaid caring role is fully aware of the potential consequences of not recognising and managing these silent killers.

I am not going to explore the physical and psychological effects of Post-Traumatic Stress Disorder (PTSD) in this post, as this is more associated with shorter term exposure to traumatic events, such as being the victim of a serious crime or witnessing a traumatic event. It is also a highly complex area, which requires a depth of knowledge I do not currently have. However, it is important to reflect in this post, that unpaid carers are just as likely to experience the effects of PTSD, so I have added some articles that provide an overview of the condition and some resources for reaching out if you believe that this something you may be experiencing.

So, what can you do to reduce the negative physical and psychological impact of constantly high levels of stress and anxiety?

The first exercise is to regularly do a scan of your body and mind. OK, you won’t have a Tricorder like Bones in Star Trek! But you can develop the skill to become tuned into the physical sensations you feel in your body and start to quickly identify the thoughts, feelings and emotions you experience as you go through each day.

Start by practicing being present in the moment. I have shared several mindfulness exercises and some short, guided meditations, which I will add in the resources section below. However, the quickest and easiest way to ground yourself in the moment, not just to conduct these body and mind scans, but generally, is the 7-11 Breathing Technique. Again, I have shared this many times, but will add it in the resource below, rather than going through it again here.

Once you are grounded and present, ensure you are in a comfortable place and position, that you feel safe and there aren’t going to be any disturbances for a while, then start to focus on these aspects of your mind and body. This list is not exhaustive, but they are a good place to start and you can develop your own routine, focusing on different elements of your physical and mental wellbeing.

  • Notice any different feelings or sensations in your body.
    • Are muscles or joints feel achier or do your limbs feel heavy?
  • Has the quantity and quality of your sleep changed?
  • Are you drinking more alcohol, smoking more or using other substances or tactics to divert difficult feelings?
  • Have you started to get headaches, or are you getting them more often or more intensively?
  • Are you snapping at people more, feeling more irritable and not being able to express yourself without feeling angry?
  • Has your eating pattern changed?
    • Are you eating less healthily, preferring more highly processed foods, like take away food, crisps and sweets?
    • Has your appetite decreased because you just don’t feel hungry very often?
  • Do you feel MORE emotional, with even the smallest event or situation triggering a strong emotional response, such as anger, crying or resentment?
  • Do you feel LESS emotional, perhaps not having any noticeable feelings at all. Noticing that situations that would have made you react quite strongly, now there is nothing, almost as if all your emotions have been turned off?

As I said, these are only a few things to be aware of when you are scanning your body and mind. Each time you complete the scan, which can be as often as you need to, but probably at least weekly to start with, record what you notice, where it is in your body and how intense the feeling is. Keep these records and as you continue to practice these scans and the next exercise I am going to suggest, along with some mindfulness exercises, be aware of any changes, perhaps reductions in the strength of the feelings, or even that they have disappeared completely.

The second activity is to explore two exercises that can begin to help you to develop Emotional Resilience.  Understanding and building emotional resilience fits into helping us to manage difficult emotions that result in increased levels of anxiety and stress, make a positive contribution to our mental wellbeing and provide us with tools to help us to support ourselves in the weeks, months and years of caring we provide for our loved ones.

I particularly like Chris Johnstone’s approach in that he starts by helping us to draw on resources a lot of us already use as carers, storytelling. We often draw a huge amount of strength from sharing our practical and emotional struggle with our caring role with other carers in social media groups and on forums, receiving validation and recognition of the difficult nature of the caring role in return.

Even if you aren’t someone who feels comfortable sharing your experiences with others, and that includes me, the basis for Chris’s Emotional Resilience method, ‘storyboarding or storytelling’, is something we are used to doing from childhood, so it is a familiar place to start to learn how to use this skill to develop personal resilience.

Chris describes his method as a two-part story. The first part involves coming into contact with a difficult or challenging situation, being present and being able to say to yourself “Here is me facing XXX (whatever the challenge is)’. For me it was noticing that I was becoming increasingly reliant on ‘rewarding’ myself for having made it through another week of caring, without having had a ‘brain fart’ as I like to call them, or emotional meltdown, which is probably more appropriate, but less amusing!

The second part of Chris’s story is ‘what happens next?’. As a caregiver you are going to be continuously ‘hitting rocks’, facing challenges that knock the wind out of you and even sometimes, make you feel that you can’t go on. However, the key insight here is that however difficult, sad or bad a situation is, in most cases there are different ways the story can end. It is often at times such as these that you can surprise yourself by finding the strength to rise above the challenge and building emotional resilience can help you to do that.

So, what was my what happens next? 

I knew I couldn’t continue down the same pathway so I asked myself the question; what was going to happen next? I planned some time on my own and wrote down all the different ‘what if’s’ I could think of. I knew I had an opportunity to change the future and the final choice I made from my list of options, was to remove the ‘rewards’ I had been using for four months, which were wine, chocolate, sweets, cakes and biscuit, basically everything I enjoyed! To demonstrate to myself that I could ‘do it’. It is still a work in progress, and I am currently coming to the end of the first month of my yearlong challenge, which includes three personal goals and fundraising for a wonderful local charity (for more information about my progress, please visit my Facebook page RESET 2021).

The triggers that got me to the point of ‘rewarding’ myself with negative behaviours haven’t disappeared, but my responses to them have changed. I am drawing on my values and strengths to make a conscious decision to take responsibility for what I was doing and to do things differently to ensure I achieve them all.  

Below is a replication of the above exercise from Chris’s book, Seven Ways to Build Resilience (click here for a downloadable version).

Here is me, facing this… (Describe the challenge you face)
What helps here is… (Describe what helps you)  

This isn’t about positive thinking; it is about thinking differently and flexible thinking.

Another example of an exercise from his book to help to develop flexible thinking and emotional resilience is belowThis time ask yourself these three questions about a situation you are facing and record your responses:

  1. What is the best that can happen here?
  2. What is the worst that can happen?   
  3. What is most likely?   

(click here for a downloadable version of this exercise).

The responses to the third question are likely to be the most rational and considered ones, when you have had time to think of all the different scenarios and will help you to then think about your options and chose the best solution for this particular situation.  

If you can combine the body and mind scanning, with practicing and developing Emotional Resilience, you are giving yourself two positive, evidence-based sets of resources to help you recognise triggers that are likely to result in high, constant levels of stress and anxiety and give yourself the best opportunities to reduce the potentially serious consequences of leaving them unchecked.

These aren’t suddenly going to make your life completely simple and straight forward, but they will put YOU in control of a significant part of your life again and give you the opportunity to think differently about how you want to live it.  

The next post, published on 17 February, we will explore “What is compassion fatigue and how it could affect unpaid and working carers”. Sometimes referred to as secondary stress or “vicarious traumatization”, compassion fatigue can occur due to the continual exposure to emotional events, it is different from burn-out or caregivers stress syndrome I discussed last time, but can co-exist with it.

Thank you so much for reading this post. We hope you found it interesting and useful, that you can join us again next time and remember, what a special thing it is that you do.

Resource

Mental Health America

UK NHS Mental Health Helplines

Health Direct – Australian Mental Health Helplines

Caregiver Stress

Caregiver Stress Syndrome

Seven Ways to Build Emotional Resilience – Chris Johnstone  (affiliate link)

7-11 Breathing Technique (audio)

7-11 Breathing Technique (written)

Chris Johnstone – Exercise 1 (worksheet)

Chris Johnstone – Exercise 2 (worksheet)

Emotional Agility ‘Get unstuck, embrace change and thrive in work and life – Susan David – (affiliate link)

Loving Kindness Meditation (short audio)

Loving Kindness Meditation (written)

Understanding the Stress Response

Mind – Symptoms of Anxiety

The Short and Long-Term Effects of Anxiety on the Body

PTSD and the Caregiver

Can caregiving lead to PTSD?

References

Office for National Statistics Report on Depression

Music Composed by Michael Coltham – Black Lab Music

Black Lab Music