I have been supporting/caring for my partner who was diagnosed with stage four Lung cancer around two years ago.  Hers is a life limiting illness, and we have gone through seeing the diagnosis as dying with Lung Cancer, then living with Lung Cancer and now my partner sees it as like living with a chronic illness. 

But this story is about me, as the partner/support/carer. A national carer evaluation report from a few years ago cited a carer expressing his disappointment at the lack of help for his emotional and psychological needs. I can especially relate to this. When your loved one has a life limiting illness it is such a challenging, painful and stressful journey. 

Having been a social worker for 30 plus years I was well aware of and competent to call up lots of services/agencies. There appears an enormous array of agencies supporting carers in brochures and web sites spruiking assistance for carers. However my experience has been that the reality does not match the rhetoric: there is an illusion of abundance, when actually there is little that addresses ongoing needs.  It is all very short term and my caring journey has been over many years.

Yes, I have been and still am in some form of ongoing trauma and fatigue in regard to my partner’s illness and maybe nothing would take away the pain and stress, but more emotional support is desperately needed for carers.

I do have some tips for carers who are dealing with a family member with a life-limiting illness. My first suggestion is that if you can find a face-to-face group in your area (there are a few across the state), then give it a go. You may also be able to join a zoom or telephone group. Talking with others in the same lifeboat is very helpful.

Also, family or couple counselling may be valuable. The carer and care recipient are on two different journeys and negotiating changes within the relationship can be helped with some outside professional input. 

Also, do some physical exercise if possible: this has been shown to lower stress and improve health and for me, it has been essential.

If you can find others that offer genuine/sincere help, family and or friends, that is great.  It is very important for helpers to ask how you are and how they can help.  If I had a dollar for every time someone said to me ‘you need to look after yourself’, I would be a rich woman. This is so, so unhelpful and positively annoying.   Offering something specific would be much more helpful – even if that is just some time for a catch up at the local coffee shop.

The CarerHelp website also includes some very helpful information and resources around many aspects of caring. I particularly found comfort from some of the carer videos. And there are helpful modules on a number of difficult topics such as preparing for end of life. I suggest you have a browse. There is a lot of valuable and useful information there, in easy to digest formats.

Let me outline some of avenues of support I explored during my journey:     

First there are the 10 sessions funded by the Commonwealth government as part of a mental health care plan from your GP. This is a good initiative, but unfortunately, there is usually a co-payment of at least $80 and once the 10 sessions are used, you are back on your own.  

Next, I took up the offer of some hospital counselling from a psychologist for carer support.  After five sessions the counselling ceased and that lifebuoy was gone.  I do understand that hospital’s primary focus is the patient and that resources for the needs of the family/carers are limited. 

I attended four brunches provided locally by a carer agency. However, I found these of limited benefit: different carers came each time, the venue itself was noisy, they were only minimally facilitated and there was little opportunity for interaction with other attendees. Then they suddenly stopped anyway, with no explanation.

I have also tried telephone support services: two state-based ones and one national. One state-based service gave me 5 calls with a Cancer Nurse counsellor.

I do understand that there is a lack of resources, but so much is about ‘outputs’ (number crunching) versus ‘outcomes’ (actual consequences) and a change of focus to outcomes could truly assist carers in such an important role.  Carer stress and burnout can be reduced.