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.
 

Carers and caring at the end of life

A guest blog post from Dr Jennifer Tieman, CareSearch Director, Discipline Palliative and Supportive Services, Flinders University

  • 16 October 2017
  • Author: CareSearch
  • Number of views: 2991
  • 5 Comments

Woman caring for her partnerIn May 2014, Carers Australia published a discussion paper, Dying at home: Preferences and roles for unpaid carers. It seems fitting that during National Carers Week we recognise the contribution that carers make to people who are dying. Most people wish to be cared for and die at home with the people they love and in familiar surroundings. Remaining at home is made much more likely where there is someone, or a group of people, who is willing to provide care and support for the dying person. Family, friends, work colleagues and neighbours all have taken on a caring role.  

We know that good communication, planning and knowledge are all critical to enable carers to provide care but carers also need to receive emotional and physical support to be able to continue caring. Carers have highlighted they need three types of support: instrumental (practical assistance), emotional (relieving the care burden and allowing family carers to maintain own activities) and information (frequent information about prognosis and expected complications).  

So how can we help carers?  There are three simple things that we can all do:

  1. Recognise the carer
    We often don’t acknowledge the caring work that friends or work colleagues are providing. Simply asking how things are going and then listening can help. We can also offer to help in practical ways such as helping with the washing, picking up the kids from school, preparing a meal. Carers can also be included in social activities where possible as well.

     
  2. Share quality information
    Many people are not aware of resources and information that are available that could help. If you are going to suggest a resource make sure that it is trustworthy and good quality.  Some useful resources for someone caring for a person needing palliative care include:
  3. Become part of a death literate community
    One day we will all die. Accepting death as part of life makes it easier for us to be able to talk with people caring for someone approaching the end of their life. It also helps us to build communities that are able to support families and carers. There are a number of initiatives that can help you become more death aware.
    • The GroundSwell Project: This not for profit organisation uses arts and health programs to create social and cultural change about death and dying.  They lead Dying to Know Day and Compassionate Communities in Australia.
    • Dying2Learn: This Massive Open Online Course or MOOC explores social and physical issues around death and dying, and looks at how concepts and representations of death have changed over time.

Carers are an important part of our community. We need to recognise and acknowledge the contribution they make.  We also need to remember that we will all die. So we need to acknowledge that one day we may be called upon to help care for a family member or friend.  
 
About National Carers Week
National Carers Week (15-21 October) is about recognising and celebrating the outstanding contribution unpaid carers make to our nation.  Anyone at any time can become a carer. National Carers Week is an opportunity to educate and raise awareness among all Australians about the diversity of carers and their caring roles. National Carers Week is asking Australians to take a minute and say thank you!

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Dr Jennifer Tieman, CareSearch Director, Discipline Palliative and Supportive Services, Flinders University

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5 comments on article "Carers and caring at the end of life"

Barbara Macintosh

18/10/2017 4:53 PM

My husband and I lost our beautiful son 10 days ago age 46 wish I had read this information then. I have a lot to say about nursing homes and community palliative care. It took seven months for the staff to give priority treatment and then he passed. Seven months looking after him two to three times a day. It was his second cancerous brain tumour that took his life.


Jennifer Tieman

18/10/2017 6:53 PM

Hi Barbara. I am so sorry to hear about your son. You have been so personally involved in caring and in providing care. And it is such a loss.

If you are wish to, please email us at caresearch@flinders.edu.au.


Robyn Youlten

19/10/2017 2:02 PM

Hi Dr.Jennifer and everyone.

Thank you for your article and for helping to raise awareness about Carers.

When I cared for my Mum through her pancreatic cancer I had NO IDEA what I was doing,but I DID learn VERY quickly about just how incredibly hard it can be on so many fronts when you are caring for someone AND for someone you love.

I did a video which appears on the Olivia Newton-John Cancer and Wellness Centre Facebook - livOn stories.

In that video I talk about just how important it is for carers to LET HELP IN.

Very often when we care for our loved ones,we take ownership of the person,the disease and everything about it - that is quite understandable because our natural reaction is to nurture,protect and assist.

But in doing that,or rather OVER doing that,we can become our own worst enemy.

The demands on the carer both physically and emotionally are intense and incredible.

For us as carers,it is a soul wrenching situation because the more we DO,the more we see the fruits of our efforts NOT always evident,especially as the disease progresses.

Associated depression,anger,sleep deprivation,emotional exhaustion AND coping with the demands of others can certainly take their toll.

Caring for a dying loved one CAN be a beautiful,deeply rewarding privilege.It is therefore absolutely ESSENTIAL that carers have in place ANYTHING which may assist them and take even a tiny bit of the weight off their often overladen shoulders.

I know that personally I came to 'adore' Mum's volunteer and her Palliative Care doctor!! The whole team from O&M,physio,even the groovy Catholic priest were just fantastic and helped Mum and I to be able to share some incredibly precious time together.

It took me a while to accept them but once I did I could see how this CARING FOR CARERS MUST be something for everyone who walks this path.


Jennifer Tieman

22/10/2017 11:05 AM

Hi Robyn. Thank you for sharing your experience of caring. I agree with you that we all need to more aware of how we can care for carers and how we can help carers feel ok about asking for and receiving help. I know that you are very aware of these issues.


Chrissie

11/12/2017 7:51 PM

Four times I have been involved in caring for a dying loved one - two siblings from cancer and two parents with age related conditions. I believe Carers should be cared for for quite some time following the death, funeral and associated administration. When the numbness from exhaustion slips away; when the grief is more often a murmur than a roar then the other thoughts come in and the loneliness. A open door should, I believe, be left open for specialist grief counselling when the Carer is ready to talk about how they have been affected by everything that has happened. The journey doesn't end at the death of a loved one and often there is a great deal of physical work to do too.

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