The Three Stages of Caregiving
The 3 emotional and practical phases of the caring journey and how to support yourself transition through them
WARNING: Towards last section of this post, I will be referring to death and bereavement.
Caring for a loved on who is ill, has physical and or mental health issues, is addicted or elderly can be one of the most challenging and rewarding experiences of your life. However, the journey of a carer often comes in three distinct stages: the pre-carer stage, the caring stage and the post-carer stage. In this blog, I am sharing an overview of the three phases of the caring journey, what each stage entails, what you can expect during each one and why it is useful to know what challenges each phase might bring and finally, 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, 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 blog post, I immediately stopped when I got to the image on the post. 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 blog, I can only scratch the surface of such a complex and emotive topic, 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 and post carer, you are unlikely to experience these in a linear way. Often you’re thrown into one, or more, of these phases with little time to prepare or even consider the complexities of what is happening. You may even find you re-enter a previous phase you thought you had moved on from.
This blog is about helping you to recognise where you are on the caring pathway and reassuring 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.
Pre-carer or pre-caring phase
The pre-carer stage is the period before you begin caring for a loved one. It’s the stage where you begin to notice that your loved one needs additional help with their daily life, and you begin to consider your options. This stage can be filled with many emotions, such as worry, anxiety, and confusion, as you navigate this new terrain.
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 slow-progressing life-limiting condition, such as Parkinson’s Disease, the time in front of you can seem voluminous and overwhelming.
Thinking about 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 such as guilt, resentment, anger and grief. But you probably won’t be alone in experiencing these strong feelings, as it 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 my life to change!’ and even grief at the loss of the life they know.
However, this time of growing awareness of the coming changes can also be a time when you can forge the pathway that takes into account 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 strength from knowing they are what your loved wants.
There is time to think and to plan.
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 condition that will have a material impact on the life you hoped for them. The sudden traumatic injury. The mental breakdown. Changes to everyone’s lives in a split second. Your loved one in denial of their increasing cognitive failure. The hollow words of a physician changing the course of your loved one’s life, and yours.
All of these types of situations can make you an instant carer. No chance to think or plan. No time to make memories and decisions 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.
During this stage, you may feel unsure about what to do, and you may be hesitant to take on the role of a carer. It’s essential to take the time to explore your options and seek advice from others who have gone through this experience. This stage is also an excellent time to research and prepare for what is to come. You can begin to gather information about your loved one’s condition, the support and resources available to you, and how to provide the best care possible.
Active caregiver phase
The active caring stage is when you actively provide care to your loved one. 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. It’s a stage that can be physically, emotionally, and mentally exhausting, as you navigate the daily challenges of caring for someone who needs extra help. During this stage, you may feel overwhelmed, stressed, and isolated as you adjust to your new role.
Caring for someone can be an all-encompassing experience, and it’s essential to take care of your own needs. Taking care of yourself can help you avoid burnout, reduce stress, and improve your overall well-being. I am not going to go into much detail in this blog. 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’ journey, 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. 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, these charities are incredibly important, as they fight on our behalf to try and improve social policies, supporting those who care for loved and friends in an unpaid capacity.
However, the key to this phase of caring is to recognise that you are an unpaid and/or working carer, because that is the first step to understanding your needs, as well as enabling you to understand your loved one’s needs, and for building the emotional resilience to support yourself and allow yourself the opportunity to seek the practical help you need. Do consider reaching out to support groups or seek help from healthcare professionals to ensure you’re getting the support you need.
Post-caregiving or post-carer phase
The post-carer stage is the period after your caregiving role has ended. This stage can be a time of adjustment, as you navigate the changes that come with no longer being a carer. It’s a time to reflect on your caregiving experience and come to terms with the emotions and feelings that may have arisen during that time.
During this stage, you may feel a sense of loss, relief, and even guilt. It’s essential to recognise that these feelings are normal and to give yourself time to process and heal. You may also need to consider your own needs and focus on your self-care, as this is a time to rebuild your life and rediscover your own identity.
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 or 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 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 in 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 meeting their medical and/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 to transition into this phase. For many, the caring role will continue indefinitely, even though certain aspects of it may change. For others, they can revert to more comfortable and familiar identities such as parents, partners or sons and daughters and rebuild the much loved and missed relationships with their loved ones. 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.
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 chance 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 ensure that your loved one is safe and well, but equally importantly, you can ensure that your physical, emotional and psychological well-being is also being taken care of.
Evidence-based exercises and techniques have helped me to navigate the transition from pre-carer to active carer over the last 2 and a half years. These are powerful tools for helping to build emotional resilience and psychological flexibility. The three I have mentioned below are useful when it comes to transitioning between the care giving phases, particularly in supporting your current well-being and, 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 you have reached on the caring journey, acceptance can be the starting point for dialling back the intensity of your mind’s internal chatter and help to put 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, reduce the level of feeling overwhelmed 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.
Setting SMART goals can be a powerful way to achieve your goals and dreams, but these techniques apply equally as well when planning for all the activities needed to transition from one phase to another.
The third and last useful exercises below relate 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 that we show to our loved ones if we are going to be able to continue to function amid overwhelming physical and psychological demands.
In conclusion, the journey of a carer can be challenging, but it can also be incredibly rewarding. By understanding the three stages of being a carer, you can better prepare for what’s to come and ensure that you’re taking care of yourself throughout the journey.
Remember, what a special thing it is that you do.
It is important to remember that you are not alone. There are many other people who are also caring for loved ones. There are support groups, online forums, and other resources available to help you connect with other carers and get the support you need.
It is important to take care of yourself. Caring for a loved one can be very demanding, both emotionally and physically. It is important to make time for yourself to relax, exercise, and get enough sleep.
It is important to seek professional help if you need it. Don’t be afraid to ask for help if you are struggling to cope with the emotional or practical demands of caring for a loved one, don’t be afraid to seek professional help. There are therapists, counsellors, and other professionals who can help you deal with the challenges you are facing.
Resources
Carer’s Journey – Getting support at all stages of your caring life
Support for parent carers on the caring journey
Carers UK and Carers Trust Resources
Being Heard: A Self Advocacy Guide for Carers – All Nations
Being Heard: A Self Advocacy Guide for Carers - England
A Carer’s Self Advocacy Toolkit – Reflecting on Events
A Carer’s Self Advocacy Toolkit - How Do You Communicate?
A Carer’s Self Advocacy Toolkit - How to Be More Assertive
A Carer’s Self Advocacy Toolkit - Preparing to Negotiate
Carers Assessment Factsheet – England
Downloads
Kristin Neff’s Self Compassion Exercises - Written
Kristin Neff’s Self Compassion Exercises – Audio
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.
This blog post was written by Lynne, who was a full time carer for four years, including during the pandemic and is now a post carer. Giving up her 25 year career to care for her mother, Lynne retrained as a Coaching Psychologist and used her knowledge and experiences as a carer, to support other carers and post carers navigate the many emotional and psychological experiences carers face each day.
Lynne is now combining her passion for gardening and wildlife to continue her journey to support carers in the future. Wild Ross is a not-for-profit and she will be working with local communities to start or support an existing Social and Therapeutic Horticulture (STH) project(s), focusing on supporting carers to develop their sustainable gardening and wildlife knowledge and skills and be a place to chat and explore nature with likeminded individuals who have a shared experience.
If you would like to know more about Social and Therapeutic Horticulture please visit Thrive, a charity leading STH in England and Wales or Trellis, a charity leading STH in Scotland. If you would like to know more about Wild Ross, STH and regenerative gardening, please contact Lynne enquiries@wildross.org