If you would prefer to listen to a slightly shorter, podcast version of this post, please click here

WARNING: This blog and accompanying podcast will make direct references to the emotions, thoughts and feeling related to grief, death and bereavement. If you feel you are affected by feelings of grief, please use the links that are separate at the bottom of this post to seek support.

Welcome to A Carer’s Heart blog. This week is the third in a four-part series covering four of the most prominent emotions carers experience throughout their caring journey: guilt, resentment, grief and anger and today we are discussing with grief.

Grief is normally associated with bereavement, however, in a lot of situations, including in the caring scenario, experiencing a sense of loss and grief can be felt while still in the active caring phase.  Firstly, I will explore carers’ grief, which is less researched and talked about, in terms of why it is important to be aware of it; how it is subtly different to bereavement grief and then share some exercises and activities you can try to reduce any negative impact it might be having, or potentially will have, on you as a caregiver 

Although grief experienced during the active caring phase can certainly bring great sadness, the difference in the caring context is that grief is experienced in conjunction with, and can intensify, all the other negative emotions carers experience daily, such as guilt, resentment, anger and frustration. Elisabeth Kübler-Ross’s famous research in 1969, identifying the five stages of grief:  denial, anger, bargaining, depression and acceptance, has more recently been questioned by academics (Friedman & James, 2008) as it’s validity. However, it is still a widely used model and can be useful in understanding the emotions you might experience during caring or following the loss of your loved one.

However, in the context of experiencing grief during the active phase of caring, there isn’t a linear timeline for the emotions to be experienced in and to follow, as in Kübler-Ross’s model, because they are constantly being re-experienced. There is no chance to internalise and accept the loss as in bereavement grief, which is fixed in time at the point of the loved one’s death. Carers grief is ongoing, reoccurring and constantly being relived, hence why you can experience this kind of grief during active caring, but be unaware of it, because it is intertwined with all the other emotions, thoughts and feelings you are experiencing and managing.

So, why would a carer be experiencing grief while they are still caring for their loved one?

Like most things involving human emotions, it’s complicated. Not everyone will experience grief in this way and, for those who do, they will experience it in different ways and to varying degrees of intensity. In this example of the way carers can experience grief while they are still actively caring, I will share how grief showed up in my life and then will outline a few practical exercises to help you manage carers’ grief if you feel it could be affecting you.

Grief at losing a relationship

Whether you are a parent of a child with Autism or a life-limiting condition and filled with a huge amount love for them; at the same time you may notice that there may be feelings of grief at the life they might have had, if the circumstances where different. Or perhaps you grieve for the life you had dreamed you would have with them, the special events and shared experiences, that may now not be possible.

Whether you are a wife grieving the loss of your wife or husband and the decades of love and friendship you shared together. Watching helplessly as they slip away from you a little more each day, anticipating the eventual, life-changing outcome but already grieving their absence.

These examples and many more show how carers can grieve for the loss of the relationships they had or dreamed of, while still being part of the lived experience of those relationships. I know that I am grieving for the loss of the relationship I had with my loved one. They are still very much present with me, in the physical sense. However, I know that I am grieving for what was; for the relationship we had that I know will never be possible again. When I reflect on why I feel this grief and sadness, using Kübler-Ross’s model as an example, I feel that I jumped straight to acceptance of the loss I am experiencing now, as well as the future final loss, I know is coming.

I can’t deny what is happening as I am bearing witness to this gradual ebbing away of a life that holds so much meaning for me.

I don’t feel anger; although the situation is cruel, I can balance the sense of injustice I feel for what is happening to them, with the knowledge that I, we, are not alone in this experience.

I have no one to bargain with. It is not a choice of their life or another’s, or this new relationship or the old one. It is, what it is.

I am not depressed, for me, I focus on what I can do, rather than what it out of my control, what has been or what will be; so, I draw strength knowing I can do only my best and nothing more.

While it is not going to make any difference to the sense of grief I am experiencing during this active part of my caring journey, I know that by recognising it for what it is and that the cause of this sadness is distinct and different from the other emotions I juggle daily, I feel more able to be self-compassionate, accepting that this is life, to let it sit there and co-exist with me.

Before I describe some practical exercises to help with managing the emotions of carers’ grief, I wanted to mention a short-animated video, produced by Megan Devine, following her grief research. It is only 4 mins long and doesn’t reference carers’ grief specifically, however, I feel it is useful to watch to help to understand how you may be talking to yourself about your feelings of grief. So, it is worth watching, and perhaps, sharing with friends and explaining why it is important to you and help them to understand how to better support you.

How to help a grieving friend

In her video Devine talks about “…acknowledgementhelps to make things better, even though it won’t make them right”.  Acknowledging that you may be experiencing grief is a step towards accepting that it is likely to be part of your caring life, if not now, then potentially in the future. However, in contrast, trying to deny or push away those feelings, is likely to result in them amplifying the already ever-present waves of emotions and negative thoughts you are experiencing.

Below are some exercises to help you to discover self-acceptance and self-compassion, both of which are powerful tools to help with building emotional resilience and psychological flexibility. I have spoken about both at length before, so won’t repeat myself, you will probably be pleased to hear! But please do click on the links below and take some time out to explore these exercises and reflect on how they help you to unhook yourself from negative emotions that you may have, or might develop, as a result of carers’ grief.

Self-acceptance affirmation exercise:

Even if you haven’t tried affirmations before, this exercise will be helpful on your self-acceptance journey. You can either follow the example below or you can make your own.

Click here to access the exercise.  Please let me know if you would like an audio version of this exercise. enquiries@acarersheart.com

Self-compassion exercises:

I shared some self-compassion exercises developed by Kristin Neff in my blog and podcast about coping with crisis, such as the COVID pandemic, which can be found here (blog post) and here (podcast), if you would like to explore these in a little more depth.


Kristin Neff’s Self-Compassion Exercises –

Worksheet

Audio Version

Kristin Neff – Definition of self-compassion

Kristin Neff – YouTube video explaining self-compassion

The next post, and forth and last in the four-part series on emotions, anger, will be published on the 4th November and include an interview with Positive Anger expert Tanya Heasley.

Thank you so much for reading this post. I know it is a difficult and emotional subject to talk about, but that is why it is so important to explore it together and I hope you found it useful. I hope you can join me next time and remember, for a special thing it is that you do.

References and Resources

Grief Support

CruseBereavement Support UK

Grief Support USA

Australian Centre for Grief and Bereavement

Resources – All funds raised through Amazon Affiliates go directly to A Carer’s Heart, Social Enterprise

3 Kinds of Grief Nobody Talks About

Finding Meaning – David Kessler – (Amazon Affiliate link)

Grief is a Journey: Finding your path through loss – Dr. Kenneth J. Doka (Amazon Affiliate link and in text)

How to help a grieving friend: Aminated Video Version

On Grief and Grieving – Elisabeth Kübler-Ross and David Kessler (Amazon Affiliate link)

The Five Stages of Grief – Elisabeth Kübler-Ross and David Kessler

The Selfish Pig’s Guide to Caring by Hugh Marriott (Amazon Affiliate link and in text)

References

Friedman, Russell, and John W. James. “The myth of the stages of dying, death and grief.” Skeptic [Altadena, CA], vol. 14, no. 2, 2008, p. 37+. Gale Academic OneFile, Accessed 18 Oct. 2020.

Meuser, T. M., & Marwit, S. J., (2001) A Comprehensive, Stage-Sensitive Model of Grief in Dementia Caregiving. The Gerontologist, 41(5), 658–670.