In this post Ros Capper discusses how to support family carers at home; her book and related ideas will be presented by Merryn at the 5th International Public Health and Palliative Care Conference in Ottawa next week.
Home Teams were the common central thread uniting the experiences of the diverse family groups highlighted in my pioneering book ‘The Accidental Carer: A Practical Guide through Uncertainty by Palliative Home Carers’. All five of us extended our family group into a ‘Home Team’, albeit in slightly different ways. These included:
- The Whānau: (Māori extended family group): ‘coming together is just what we’ve always done – coming together and making it work’ – Tane, who cared for his Nan.
- The Lesbian Clan: ‘Jane and I realised we needed to call on as much support as possible from The Clan (our lesbian community). Jane was facing her death, and I had to face the fact that I was going to lose her, my life partner, lover and best friend for 25 years. It felt enormous. We knew we had to reach out.’ Pleasance, who cared for her partner.
- The Scattered Family: Who should take charge and make decisions when a family comes together to care? Diana* wrote ‘with several close family members involved in Anne’s care during a short illness, I struggled with acknowledging who was in charge. Anne had recently married her partner of 10 years and I thought at times that he was bossy and taking control. By observing Anne I could see the person she responded to most was her husband. This made it easier for me to step back…having a lead carer worked well for us right through to the end. It was a team approach – we all worked together to give Anne the best care we could while running a household.’ *Anonymous carer for her sister.
Question: Could attracting a Home Team of family, friends and others become intentional? Could this become THE USUAL WAY to approach the situation of a person living at home with an end of life diagnosis and those who care for them. And be advocated for?
More Questions: Should we acknowledge at diagnosis that this is a time for people, chosen by the ill person and the main carer, to gather around to share the support that will be needed?
- Would this save family groups going in panicked circles as they seek what they need from a medical system created for ill people? (With no signs saying ‘Carers This Way’). I was very aware that this is not an experience most staff have had and therefore prioritise: it’s left to just happen.
- Would it be easier if the focus of the Home Team was largely on the main carer? My experience was that the current medical system is in place for the ill person and there is no care-system for the home-based carer(s).
- Would it be honest to advise that it is rare to meet anyone within the medical or hospice system who has cared for someone at home with a life limiting illness? And that educational materials are not authored by those who have had this experience? And begin to change this?
- Would a community development model be the wisest way forward to change this?
I strongly believe that the answer to all these questions is yes.
In my community (Devonport, Auckland), we are beginning to develop a model which could fill the huge gap in support for family, whānau and friends who are caring for someone at home who has a life limiting illness. The community are very supportive, with ex-carers, GPs, pharmacists, solicitors, and palliative care nurses all putting up their hands to help. And the Te Arai group are very keen to provide research support. However, we face financial challenges. If there is anyone reading this who can provide advice, or even personally support the innovative community based approach we propose, we would love to hear from you. There are currently thousands of people across New Zealand, struggling as we did, who could benefit.