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Welcome to the Carers’ Hearts podcast.

This week I am exploring the emotional and psychological elements of caring for a friend or loved one from a distance and provide some activities to manage and reduce the guilt and stress that can be associated with being a carer or caregivers in these circumstances.

In the blog and podcast on August 5, 2020, I spoke about the fact that definitions for carers, not only varies across countries but can also vary across different organisations within a country. In fact, even the term itself is different depending on what continent you come from! In the UK, the term ‘carer’ is used for both paid and unpaid individuals, which makes it a bit confusing sometimes, particularly since COVID and ‘clap for carers’! In Australia it seems that ‘carer’ is used for unpaid family members or friends, but ‘caregiver is used for paid social care professionals, which makes the distinction easier. Whereas in the US, ‘caregiver’ seems to be used for both again!

Anyway, the point is, that regardless of the word or term that is used, the amount of time you care for another person or where you live in relation to that individual, it is reasonable to consider that you are an unpaid carer or caregiver if you are doing it out of love or friendship and it is unpaid. I think this definition from NHS England in the UK, is a good overall description of someone carrying out unpaid caring responsibilities:

  A carer is “someone who, including children and adults, looks after a family member, partner or friend who needs help because of their illness, frailty, disability, and mental health problem or an addiction and cannot cope without the support, the care they provide is unpaid“.

NHS England

As I also discussed in the August post, there are a significant number of unpaid carers will not self-identify as such, regardless of any definition and this is particularly true of those who care for a loved one or friend from a distance. There are many reasons why people don’t think of themselves in terms of being an unpaid carer or choose not to use that term, either for their own sakes, or to respect the wishes of their cared-for-person and I won’t be going into those in this post. I will be producing a short workshop around the larger topic of carer identity and the main psychological barriers to individuals self-identifying in the next few months. However, for now, I will explore some of the additional psychological challenges someone who cares for another person from a distance, can experience.

Since the industrial revolution, the nature and structure of family units have changed significantly, from extended families, where several generations lived close to each other, often in the same house and where your neighbours were also your friends. To the nuclear family, where the desire or pressure to buy property, secure jobs or explore life’s opportunities abroad, has resulted in greater distances between the three generations who would previously have lived close to each other and supported one another: children, parents and grandparents. OK, so you already knew that! However, in the caring context this subtle but steady change in the distances with which individual family members need to travel to see, or take care of each other, has resulted in an increasing number of people taking on the role of being an unpaid carer but from a distance and in a lot of cases, a significant distance, such as a different continent. This point is even more important when you consider the increase in the number of multigenerational carers, who are now supporting family members in more than one generation, in terms of child care, as well as social care.

The list of tasks and activities you can be carrying out as an unpaid carer is never-ending, well it can feel like that sometimes! It would fill this article if I start to go through them all, but it is useful to think of them in terms of categories of activities, although, of course, a lot of the activities or actions will fall into more than one category. But for the purposes of this article, I have identified three main categories:

Personal and domestic care: These activities include, but are not confined to, carry out personal care support (helping with bathing and toileting etc), shopping, picking up medication, cooking, housework, gardening etc.

Emotional and psychological care: Equally as important as the category above – supporting the emotional wellbeing of a loved one or friend by visiting, chatting on the phone/virtually, going out for walks with them or taking them to the gym/theatre/bingo etc.

Care management:  Activities such as doctor and hospital appointments, arranging assessment, arranging and managing social care support, liaising with family members and friends, finances, legal documents etc.

At any given time, as an unpaid caregiver, you may be responsible for activities in one, two or all three categories and then some! Each area of responsibility and activity is important and will, of course, change with time, but how you can manage them, will depend on your accessibility to the person you are caring for and that, of course, will be dependent on your proximity to them, as well as other impact factors, such as finances, jobs, family, etc.

Completing activities in the first two categories, to a greater or lesser extent, will depend on how often you can physically attend, in person, to support your loved one. However, the further you live from them or the more your ability to visit is restricted, the third category, care management, becomes more of a focus, as you will most likely be coordinating others to achieve the activities in the first two groups. However, just because you are not living near to the person you are caring for, doesn’t mean that the level of responsibility or emotional and psychological challenges are any less. In fact, I would argue that in many respects they are increased and for many reasons, so this is definitely not the soft option in the caring stakes!

Whether you are trying to arrange for family or friends to check on your loved one, pick up medication or take them some shopping, or whether you are negotiating with a health care professional to get health investigations or treatments started, it can feel like herding cats a lot of the time! Great idea, but rarely succeeds in reality! Even in the non-caring context some of the greatest modern endeavours can be finding a human being to speak to, who can actually help you, without being put on ‘hold’ then having to listen to 147 different options, then forgetting why you called (or is that just me!). So, add to the fact that you already have very limited control, or perhaps no control at all, over what you can do to help your loved one or friend, the guilt, fear and anxiety carers can already experience, can be magnified into the realms of the “what if’s” and assumptive thinking and worrying, all of which will negatively impact on your emotional and psychological wellbeing.

Why is this knowing about all of this, important?

Stress…If you have listened to or read other posts, you will know that I refer a lot to stress in general, and in particular Carers Stress Syndrome or burnout, as they can be the reality of being an unpaid carer and caring from a distance can only act as a magnifying glass on the symptoms and possible negative impact on your mental and physical wellbeing. If this is a topic that you haven’t explored before, then please do take the time to have a read of the article or listen to the podcast version about the signs and symptoms of Carers Stress Syndrome. 

So, what can you do to help to reduce your levels of stress associated with being a carer from a distance?

There are three practical exercises and activities that you can start to implement straight away, so let’s go!

First, control the controllable, the rest…manage it, give it to someone else to deal with or forget it! OK, the last one is not that easy (but can be done!) but it is the first part of the sentence that is important. As an unpaid carer who is unable to directly impact on or deliver the activities your loved one needs you can only do, what you can do. It sounds obvious, but so many people get stressed and worried about things that they are never going to be able to control and that is a waste of valuable thinking capacity and exposes you to unnecessary physical stress responses.

If you cannot physically go and visit somewhere to collect a piece of equipment or speak to a consultant in person, then the next best thing is to employ technology or utilise other resources, such as friends or family members or support services. Use your vital, but limited, emotional and psychological resources to the best efforts and for things that you actually have control over. Stephen Covey’s “The 7 Habits of effective people: Powerful lessons in personal change” book is a great read to help you to change how you proactively approach situations and think differently about problem-solving, rather than reacting to situations you can’t control. I will be doing a webinar and developing a short workshop further exploring control, but in the meantime, Stephen’s book is a good place to start!

The second activity you start straight away, is to accept that guilt is going to be a large part of how you are going to feel. Whether you live with your loved one 24/7 or live on the opposite sides of the world to each other, you can only do your best for them and things will happen sometimes that are unfortunate or sad but trying to fight negative emotions, particularly guilt, will only amplify them. This is the article on the emotion of guilt as part of a series on building emotional resilience last year. So, please go back to this one, and perhaps the others in the series, grief, resentment and anger, if you haven’t read them already and please know that you are doing what you can and no one can ask any more than that.

The last exercise or exercises relates to something I am passionate about, self-compassion. Linked to the two activities above, self-compassion is often confused with self-care, however, self-compassion is quite different and is “showing the same warmth care and compassion to yourself as you would to someone else” (Neff), such as to those who you love and care for. Self-compassion helps us to get through a situation, such as the pandemic, which is important, because for some situations there is no way of getting around them! It’s a way to relate to our own struggles in a way that helps us. These can be very small actions that we think about and make small changes; it is important not to judge yourself; not to fall into the drama of something and catastrophise it and it is about having awareness of yourself ‘in the moment’. Acknowledging that something is hard and perhaps at times, overwhelming but it’s not just you. Recognising it is a shared experience will help you to draw strength from what is a very difficult event. 

There are three main elements to self-compassion and all three need to be present for it to be a useful and stable mindset.

Firstly, to start to develop a self-compassion routine, you need to be aware that you are struggling but in a balanced way, not getting wrapped up in the emotions. You need to be present in your own life to notice your emotions. The second element is to cultivate a sense of common humanity. Events such as the pandemic happen and will continue to happen, different ways, throughout most of your lifetime. The power comes from accepting that life can be cruel and unfair sometimes and empowering each other to work through the difficult times. So, the last element of self-compassion is kindness. Self-compassion is a desire to alleviate your own suffering, paradoxically to be able to do that you have to acknowledge that you are actually suffering and be motivated to want to help yourself; accepting that the event happening and how you can look to the future to heal and to grow.

A great question to ask yourself is: What can I do differently to make this situation better for me, so I can also help others?  Kristine Neff is the lead researcher into self-compassion and in her mindful self-compassion programme, she has developed three short exercises to help you to develop a self-compassion mindset. I have shared a link to the audio and written versions of Kristin’s exercises in the resources section below, as well as some other links, such as to Kristin’s website and the

7-11 Breathing Technique, which is useful to start getting used to mindfulness, as well as using it as an intervention if you are starting to feel the physical response to stress.

Next month is May Magical Music Month! On May 5 (which is my birthday by the way!). I will explore how music can help to reduce stress and anxiety as a carer and on May 19, I share my deep dive interview with the lovely Laura Atyeo, Founder of Open Harmony. Laura runs courses and works with individuals, helping participants to experience those spontaneous moments of joy, connection and transcendence that spark newfound confidence and insight, all through the power of music.  

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

Who is considered a carer?

Carers UK: Facts and Figures

Carers Week 2020 Report

Mental Health America

UK NHS Mental Health Helplines

Health Direct – Australian Mental Health Helplines

Caregiver Stress

Caregiver Stress Syndrome

What is Carer Stress Syndrome, how to recognise and manage it

Understanding the Stress Response

Mind – Symptoms of Anxiety

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

7-11 Breathing Technique (audio)

7-11 Breathing Technique (written)

Self-compassion – Positive Psychology Today blog and Kristin Neff’s exercises

Kristin Neff – Definition of self-compassion

Kristin Neff – YouTube video explaining self-compassion

Kristin Neff’s Self-Compassion Exercises – Written

Kristin Neff’s 3 Self-Compassion Exercises – Audio

Stephen Covey’s “The 7 Habits of effective people: Powerful lessons in personal change” (non-affiliate link)

Music Composed by Michael Coltham – Black Lab Music

Black Lab Music