What are the top key areas that primary carers need help with when caring for a person at the end of life?
There is much to take on board when you become a carer, as the immediacy of your relationship to the person moving towards their end of life, can make you as vulnerable as the dying person.
My own lived experience as a carer, has shown me, that the more one comes to understand what is to come, with support, the more you can be present and emersed safely with the good, the difficult, the emotional, and the intimate times wrapped up in being a carer.
For me it’s important for carers to:
- Find and be with people to support you in your role, often through community and health-based services, who genuinely give you the opportunities to speak and listen to you without judgement, or overlay of their views, and can help you to allay your concerns, anxieties, and fear.
- Have the opportunity to garner information and the support, so you can find your voice to become the deteriorating and dying person’s key supporter, advocate and often spokesperson.
- Make sure you can find a balance to remain well in yourself, understand what it is you need to maintain your own wellbeing with, in amongst your own fatigue and grief as well as dealing with other peoples’ expectations.
Can you tell us how the CarerHelp Diversity resources will be developed?
We all need to be understood and heard. Carers need to know, through information, that they can safely be heard, with information that is accessible to them and that they are not alone in the role of being a carer, irrespective of background, language, culture, faith, abilities and limitations, age, or gender and sexual identity.
" We all need to be understood and heard. Carers need to know that they are not alone in the role of being a carer - irrespective of their background, language, culture, faith, abilities and limitations, age, or gender and sexual identity. "
The CarerHelp Diversity project, I believe, strives to bring together and link information that can be easily accessed and trusted to focus on the matters that are important to a carer of a dying person, being a reliable portal to enlighten and empower them in an engaging way.
CarerHelp is collaborating with various groups with diverse needs for this project. Can you tell us more how will the CarerHelp Diversity resources be developed?
The project’s National Reference Group has representation from people, who may not only wear a personal badge that might fit a ‘diverse person’ monograph, but, they bring their significant professional, organisational roles, and networks that represent various communities that value add to our conversations in making progress in shaping the resource developments and linkages.
" Find and be with people to support you in your role, often through community and health-based services, who genuinely give you the opportunities to speak and listen to you without judgement. "
Recognising there will always be limitations, it’s important to understand that, even though there are so many ways in which people need to have the information conveyed to them to be meaningful, people are actually seeking information that represents common concerns and issues. For us it is nuancing the way in which the information is ‘told’.
Like carers, we all represent and intersect with many communities. The challenge, but hopefully the success, of the resources developed, is that the information will find a way to resonate with the community the carer predominately identifies with.
What should carers look forward to when the resources are launched?
Discovering resources that may help to bring peace of mind at such a time of significant vulnerability.