If you would like to listen to the podcast version of this post, please click here

WARNING: Towards the last section of this post, I will be referring to death and bereavement. If you would rather not read this post but would like to receive the exercises and activities to support you through all 3 phases of caring, please let us know at enquiries@carershearts.org and will be pleased to send them to you.

Welcome to the Carers’ Hearts blog.

Firstly, Happy New Year!

This week I am sharing an overview of the three phases of the caring journey, what aspects of caring each one is likely to cover, why it is useful to know what challenges each phase might bring and finally, share some resources, activities and exercises, to support you as you enter and transition between them.

Firstly, when I begin the process of researching for a new post and podcast, I start by finding the image for the blog, as I am a visual person, and it helps to inspire me to write. As I was scrolling through images for this post I immediately stopped when I got to this image. I was struck by the multitude of colours, not only transitioning through the colour spectrum but also in their intensity and flow and it immediately made me think of the intertwining and ebb and flow of emotions we experience as carers and that as we transition from one phase of the caring journey to the next, those emotions, like these colours, can become blurred and it can be difficult to see where one stops and another begins.

In this post, as with all the topics I have covered in these posts and podcast episodes, I can only scratch the surface on complex and emotive topics, to start conversations and show, often by sharing my own personal experiences, that as a global family of carers and caregivers, you are not alone and together we can support each other, to thrive and grow.

Although I am going to briefly describe the three main phases of the caring journey, pre-carer, active caregiver or post carer, you are unlikely to experience these in a linear way. Often being thrown into one or more of these phases, with little time to prepare or even consider the complexities of what is happening, or you may even find you re-enter a previous phase you thought you have moved on from.

This post is about helping you to recognise where you are on the caring pathway and reassure you that there is emotional and psychological support, as well as practical advice and guidance out there for you, but it helps to recognise what kind of support you need.

For some of you, like me, this may be a long, drawn-out period, of months, even years, when there is time to plan, both financially as well as emotionally, for what the future holds. Preparing to care for a loved one who is suffering from conditions often related to ageing, such as dementia, or for a family member who has a known, but perhaps slower progressing life-limiting condition, such as Parkinson’s Disease, the time in front of you can seem vacuumous and overwhelming.

Pre-carer or pre-caring phase

Considering all the changes that might be needed, such as to your home, how you can continue to work and to the very way you live your life, might feel unsurmountable and start you on the pathway that can evoke the strong emotions I have spoken about in many of my previous posts; guilt, resentment, anger and grief.

But you probably won’t be alone in experiencing these strong feelings, as is likely that your loved one will also be feeling resentment, as they think ‘why me?’it’s not fair, or perhaps anger ‘I don’t want to my life to change!’  and even grief at the loss of the life they know.

But at least there is time to think.

However, this time of growing awareness of the coming changes can also be a time when you can forge the pathway that takes account of your own emotional, financial and physical needs. This pre-caring period can give you precious time to share the planning together with your loved one. To make memories, that you can both hold in your hearts for when the journey becomes more emotional. Together you can discuss and make those difficult decisions that you know will be coming, so when the time comes, you can draw strengths from knowing they are what your loved wants.

However, the transition into the role of a carer is no respecter of time or emotions. The birth of a much-loved child with a life-limiting illness or condition which will have a material impact on the life you hoped for them. The sudden traumatic injury, changing everyone’s lives in a split second. The hollow words of a physician changing the course of your loved one’s life, and yours.

All of these types of situation can make you an instant carer. No chance to think or plan. No time to make memories and decision for those difficult choices for the future. Life has made that decision for you, now you are a caregiver, and so the journey begins in earnest.

Active caregiver phase

This phase of caring will be the one most familiar to the general public. When people talk about unpaid caregivers, they rarely consider the journey a person has already taken to get to this point, however, it can and does have an impact.

I am not going to go into much detail today, as most posts have an element which supports the active caring phase. However, it is an opportunity to make two points, which I believe are key and will help you to assimilate and manage the tsunami of emotions you are likely to experience in this phase.

Firstly, this is probably the most fluid phase of the caring journey. How quickly you enter it, and for how long you are in it, will be completely different and unique to each person. There is no ‘cookie-cutter’ model, you can’t compare your journey to another carers’, even if you are in similar situations, such as being parent carers, because every other element in your situation will be different to theirs. However, you can draw strength and build emotional resilience from understanding how you deal with each challenge, learning from it and developing psychological flexibility by acknowledging that there will be times when the answer is just to accept a situation for what it is and to move forward anyway.

Secondly, even taking the above point into account, the time when you actually recognise or acknowledge that you are an unpaid or working carer, will have a material impact on how you respond to and manage this phase. I have mentioned many times in my posts, that despite there being definitions for unpaid caregivers, they vary in different countries and most of us aren’t even aware of them. In terms of organisations such as Carers UK and Carers Trust, and similar organisations across the world, they are incredibly important, as they help them to fight on our behalf to try and improve social policies supporting those who care for loved ones and friends in an unpaid capacity.

However, the key for this phase of caring is to recognise that you are an unpaid or working carer, because that is the first step to understanding your needs, as well as you understand your loves one’s needs, and for building the emotional resilience to support yourself and allow yourself the opportunity to seek the practical help you need.

Post-caregiving or post-carer phase

When I talk to members of the public and other carers about this phase of the caring journey, many will think that this only relates to the death of a loved one. As sad as any loss is, whether in the caring context or not, this phase is much more complex and fluid than that.

Quite often individuals have given up their careers, businesses, full-time education, to take on the role of an unpaid carer. So, if their loved one does pass away, not only are they plunged into personal grief and loss, they may have also just lost their job, identity and purpose. When I conducted the research for my master’s dissertation on ‘carer, to post-care identify transition’, I found that some participants were able to smoothly transition back to their previous lives; for others, they had found a sense of purpose and meaning in the caring role, and continued to care for other family members or entered one of the professional caring services. However, for many, this loss of role and identity left them into a place without purpose or meaning and struggling to rediscover their place in their own lives, as well as in society.

This is only one small element of the post-caregiving phase though, for many this phase and the transition into it, is far less defined.  

Ensuring the safety of your loved one and to meet their medical or psychological needs might mean that the active caring part of the role is transferred to social care or health care environments. This, in itself, can evoke a strong emotional response, as the sense of guilt and feelings that you have failed your loved one or let them down in some way overwhelms the knowledge that this is the right and best course of action you can take for the person you love so much.

As with pre-caring and active caregiving, there is no right or wrong, good or bad way in transitioning to this phase. For many, the caring role will continue indefinitely, even though certain aspects of it may have changed and that is right for them. For others, they can revert to more comfortable and familiar identifies such as parents, partners or sons and daughters and rebuild the much loved and missed relationships with their loved ones and that is right for them. For some, it is the right time to refocus on their own lives, knowing that their loved one is safe and receiving the care they need and that is right for them.

For each of these phases briefly described above, the only consistent element across them is ‘change’. Whether you are moving in or out of a phase, due to your loved one’s needs or your caring journey comes to an end, or is in the planning stages, to give yourself the best opportunity of navigating the particular part of the journey ahead of you, you will need to be aware of where you are right now and consider and plan for the next likely steps you will need to take. Not only will this help to ensure that your loved one is safe and well, but as importantly, that you can ensure that your physical, emotional and psychological wellbeing is also being taken care of.

In most of my posts, I have shared evidence-based exercises and techniques that have helped me to navigate the transition from pre-carer to active carers over the last 2 and a half years. All of them are powerful tools for helping to build emotional resilience and psychological flexibility, but the three I have mentioned below, are useful when it comes to transitioning between the phases, particularly in supporting your current wellbeing and as importantly, preparing for when you need to draw on extra emotional resources.

Firstly, self-acceptance: “Learning self-acceptance provides you with a foundation for personal meaning in life. It is easier to experience meaning when you are comfortable with the person you are”. (Wong, 1998).

Whatever point on the caring journey you are, acceptance can be the starting point for dialling back the intensity of your minds internal chatter and help to place blocks and challenges into perspective, when it seems that everyone and everything is working against you!  These are some of the ‘self-acceptance’ sources of creating meaning for carers and personally, I regularly read and remind myself of these, particularly the last one, which can be a real barrier for me, but I am getting there!

  • Accepting that sudden, significant and unpredictable changes are likely to happen; they may feel overwhelming and might change how you see yourself and your role as a carer but you may grow as a result.
  • Accepting that there is no such thing as a ‘perfect carer’. Embracing who you are, accepting that you will make mistakes; there will be emotions such as, guilt and regret, but you are doing your best and you are enough.
  • Accepting that asking and receiving support from others is not a weakness but a strength and will help you to provide the best care for your loved one.

Secondly, is to reduce the level of overwhelm by identifying the activities or actions that are absolutely necessary, by using goal setting and action planning. By removing excessive demands that are not going to serve you or your loved one’s immediate needs, or those in the near future, you will clear your head of unnecessary noise and give yourself the best chance to think more clearly, and differently if necessary, and to make the best decisions for you and your loved one.

In the post ‘A goal without a plan is just a wish’ on the 26 June 2020, I explain why setting SMART goals can be a powerful way to achieve your personal goals and dreams, but these techniques apply equally as well when planning for all the activities needed to transition from one phase to another. So, please do read that post or listen to the podcast version, the resources are in the show notes.

The third and last useful exercises relates to self-compassion. This is very different to self-care, which is also important, however, we need to show ourselves the same compassion and kindness we show to our loved ones if we are going to be able to continue to function amid overwhelming physical and psychological demands.

In the post ‘COVID & Caring: 5 practical activities to support you in a crisis’, I shared the powerful work of Kristin Neff, outlining the 3 elements of self-compassion and shared her 3 exercises for you to practice. Please do read how self-compassion can support you or listen to the podcast version and I will share the written and audio versions of her exercises in the resources section below.

The next post is about How to speak to your employer about being a carer will be published on 20 January. In this episode I will be discussing the benefits of self-identify yourself as a carer in the workplace, what this can mean to you as an employee and for your colleagues and employers and I will share some strategies and resources for preparing for those conversations.

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

Resources

Carers Journey – Getting support at all stages of your caring life

Support for parent carers on the caring journey

Kristin Neff’s 3 Self-compassion exercises – Written

Kristin Neff’s 3 Self-compassion exercises – Audio

Carers UK and Carers Trust Resources 
Worth caring about

Being Heard: A self-advocacy guide for carers

Being objective

How do you communicate?

How to be more assertive

Preparing to negotiate

Reflecting on events

Carers Assessment Factsheet – England, UK

Your rights in the workplace 

Top tips for carers

References

Wong, P. T. P. (1998). Spirituality, meaning, and successful aging. In P. T. P. Wong       & P. S. Fry (Eds.), The human quest for meaning: A handbook of    psychological research and clinical applications (p. 359–394). Lawrence    Erlbaum Associates Publishers.

Music Composed by Michael Coltham – Black Lab Music

Black Lab  Music