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Carers Rights Day: taking care of yourself

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Many WAY members have been the main carer for their partner in the latter stages of their life. In this guest blog post, WAY member and Clinical Psychologist Jason Spendelow explains how bereaved carers can look after themselves once their caring responsibilities come to an end…

Friday, 30 November 2018 is Carers Rights Day. This year’s theme is ‘caring for your future’. Raising awareness of carer rights and available support is crucial in promoting carer wellbeing. However, carer welfare is often neglected once caring responsibilities end; a change that often occurs through bereavement. I have witnessed the many psychological challenges faced by people in this position through my work as a Clinical Psychologist, but also as a bereaved husband since 2017 at the end of my wife Charlotte’s seven-year battle with cancer.

Post-caring bereavement often represents the continuation of a grief process that commenced long before losing a loved one because intensive caring often results in multiple losses (e.g., loss of companionship, loss of freedom). Bereaved carers can also face a fundamental change to their routines, responsibilities and identity. Because I cared for my wife full-time, I was faced with immediate and profound changes to day-to-day life the moment she died. This ranged from the mundane (e.g., freedom to eat whenever I liked) to the poignant (e.g., adjusting to being alone in our house). 

No two people will share the same bereavement journey. As most of us know, bereavement is an incredibly varied, personal experience with no ultimate destination. Carers are no exception. Both improved and deteriorating psychological wellbeing can occur in the post-caring phase of a person’s bereavement journey. However, bereavement distress tends to be relatively higher in those who experience psychological difficulties while caring, are unprepared for a loved-one’s death, and in spouses (there are a range of sources for this – see below).

Fortunately, you can help yourself to help manage the process of bereavement after caring. I have learned that making predictions and setting expectations about how you should feel is a recipe for disaster! You must start with reliable information about bereavement, and realistic expectations for your psychological and daily functioning. There are many fantastic resources providing sensible information about the grieving process. Leading UK charities such as WAY Widowed and Young and Cruse Bereavement Care are good places to start for support.

You should be aware of psychological distress that might warrant professional intervention. Common mental health issues following bereavement include low mood, stress and anxiety. While these difficulties are common, additional help should be sought when these challenges persist at a level of severity that impairs day-to-day function and/or causes significant distress. Your GP is a good place to start in non-urgent circumstances. And the Samaritans are available 24/7 in times of crisis.

Finally, bereaved carers can benefit from thinking about their new identities. Caring can become an all-encompassing role. When the time feels right, it can be useful to consider what you want your future life to look like, identify key values, and focus on roles that are important to you (e.g., uncle, professional, musician). This takes time so do not rush yourself.

You will always carry the carer experience with you and the challenge is to incorporate this into a life which is ever-evolving. The expression of love, loyalty, compassion and support through caring can represent the best of us. But give yourself permission to grieve and experience the wide range of emotions that are an inevitable part of this important process.  

Dr Jason Spendelow is a Clinical and Coaching Psychologist who works with people in-person and online to manage a wide range of psychological difficulties, including loss and bereavement. www.jasonspendelow.com

If you are looking after someone and need some advice, please visit www.carersuk.org

References

 1. Allen, J. Y., Haley, W. E., Small, B. J., Schonwetter, R. S., & McMillan, S. C. (2013). Bereavement

among Hospice Caregivers of Cancer Patients One Year following Loss: Predictors of Grief, Complicated Grief, and Symptoms of Depression. Journal of Palliative Medicine, 16(7), 745-751.

2. Burns, E., Prigerson, H. G., & Quinn, S. J., Abernethy, A. P., & Currow, D. C. (2018). Moving on:

Factors associated with caregivers’ bereavement adjustment using a random population-based face-to-face survey. Palliative Medicine, 32(1), 257-267.

3. Caserta, M., Utz, R., Lund, D., Supiano, K., & Donaldson, G. (2017). Cancer caregivers’

preparedness for loss and bereavement outcomes: Do preloss caregiver attributes matter? OMEGA- Journal of Death and Dying, Epub ahead of print.

4. Kelly, B., Edwards, P., Synott, R., Neil, C., Baillie, R., & Battistutta, D. (1999). Predictors of

bereavement outcome for family carers of cancer patients. Psycho-Oncology, 8(3), 237-249.

5. Thomas, K., Hudson, P., Trauer, T., Remedios, C., & Clarke, D. (2014). Risk factors for developing prolonged grief during bereavement in family carers of cancer patients in palliative care: A longitudinal study. Journal of Pain and Symptom Management, 47(3), 531-541

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