CareSearch Blog: Palliative Perspectives

The views and opinions expressed in our blog series are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health.
 

Insight into being a carer

A guest blog post by Raechel Damarell, Research Librarian, School of Health Sciences, Flinders University

  • 17 October 2016
  • Author: CareSearch
  • Number of views: 5112
  • 1 Comments
Insight into being a carer
In May 2011, my widowed mother, Donne, was unexpectedly diagnosed with late stage oesophageal cancer. Mum was the epicentre of my family’s world and my best friend. She had selflessly cared for my two small children from infancy when I returned to work and rarely a day went by when we did not see or speak with her. When palliative chemoradiation proved brutal and her strength failed, it was without hesitation that my family invited her to move in with us so that we might care for her. We had no inkling of how the future would unfold, or what it might be like to watch a loved one gradually die, perhaps in great pain.  We simply felt it right and natural that family surround Mum right until the end. This end came 6 months later.
 
For most of that time, while Mum slept for long periods during the day or chatted with visiting friends, we tried to go about our daily routines as normally as possible. Some people criticized this, seeing my continuing to work as a sign I was ‘in denial’. Others worried about the long-term effect her dying presence would have on my children, aged 6 and 9 years. While these criticisms hurt, I held to the belief that my children should experience dying as a natural process to be faced head on, and that Mum should continue to know herself to be a vital, contributing part of our lives.  Right until the end, Mum insisted on doing our dishes and washing our clothes, despite our protests. She would say ‘let me live for as long as I can’. Our children also continued to cuddle up to her on her bed and regale her with stories of the day. In fact, when Mum died, they continued to stay with her body while we spoke to the undertaker. They were found later gently talking to her and stroking her hand. 
 
For me, one of the hardest aspects of caring for Mum was the rapid transition from daughter providing emotional support to having to focus on complex medication schedules and doctor appointments. There were times during the worst complications of treatment when dealing with daily physical necessities left little time for any other communication between us. I felt myself become increasingly ‘managerial’ and task-oriented and worried that this would be how it was for all the time remaining. I need not have worried for we were fortunate to have the support of two amazing organisations: the Royal District Nursing Service, and the Western Palliative Care Service. It was precisely their accessibility and quality of care that enabled us to maintain some semblance of reality under what often felt like surreal circumstances.  I will forever be grateful to each and every clinician that came into our home, supported us emotionally in the dark times, assured us we were doing OK when we felt overwhelmed or unsure and, most importantly, provided Mum with kindness, dignity, and gentle good humour.  
 
When Mum died, it was strange how quickly I came to view the period of caring for her as one of great beauty and meaning, despite intense periods of anticipatory grief and loneliness. I would even venture to use the word ‘sacred’, as far as I understand the term. For some time, I mourned the loss of the carer role, along with grieving for Mum.  Even today, I have largely forgotten the fear and the overwhelming sense of an approaching tsunami that dominated those final weeks. I am now left with a sense of privilege that, as she loved me into the world, I was able to love her out of it.

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Raechel Damarell,  Research Librarian, School of Health Sciences, Flinders University


This blog forms part of a series of blogs to recognise Carers Week and the important role carers play in the community. 

The CareSearch website provides trustworthy, evidence based information that helps carers manage a loved one's terminal illness at home. You can find it at www.caresearch.com.au.
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1 comments on article "Insight into being a carer"

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Robyn Youlten

18/10/2016 11:24 AM

Hello Raechel

I just wanted to thank you for sharing your story about your mum and yourself and family.

I too experienced that 'sacredness' with my mum who had late diagnosis pancreatic cancer with secondaries.Mum and I were able to 'live' those precious 4 months at my house.There are parts of that time spent together that I could NEVER put into words.

I think it is important that we get back to sharing death and the lead up to it.Since hospitals came into existence,that family interaction and inclusiveness has been stripped away to a large degree.Although we now tend to focus on a 'groovy' funeral,it is the spending of time with the dying and being there as much as is possible in a natural environment that I think we have lost.

I think we need to get back to that wherever possible.

Death is a part of life and there is so much to share,to say or to even be said in the silences between those we love and us.

Sharing my mum's time with her brought us closer together,made TIME seem different,sorted out the mundane and trivial and what was REALLY important,tossed away materialism and deepened us spiritually.Such time spent together,was indeed sacred.

I wish you well.

Peace,

Robyn:)

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