I recently spoke at an SA service provider forum, the theme of which was “No-one should have no-one.” In response to the theme of the forum, I spoke about ‘The impact of caring – social isolation’. The following is a brief outline of my talk, which I hope will give individuals, families and providers some insights about carers and the impact caring has on them.
Carers are individuals. Every carer undertakes their caring role in circumstances unique to them. The way they manage will depend on their life experience, skills, knowledge, age, gender, relationship with the person they care for and the level of support available to them. There is an enormous range of opinions held by carers about the role. Carers have said to us that they often gain a lot from the caring experience. They learn about the person they are caring for, the medical or physical condition, and the treatment options available. In short, they often become experts themselves on the condition or disability of the person they care for. This can help them be powerful advocates.
Some carers say they feel privileged to support a person who may have given them a lot of support before their roles were reversed, for example, a son or daughter caring for a parent or a husband caring for his wife. But there are also a lot of challenges that carers can face. One of these is isolation. The demands of the caring role can prevent normal participation in family and community activities and employment.
Another challenge is invisibility. The focus of attention on the person with the illness or disability can lead to the carer feeling invisible, with their own needs secondary to those of the person they care for. There can also be loss of confidence and self esteem. Many carers become increasingly isolated from community, family and friends.
Low levels of health and wellbeing are also common among carers. Studies show that carers have lower levels of health and wellbeing than their counterparts who are not carers. The ever present struggle to secure adequate, reliable and ongoing support for their loved one is a burden and a significant cause of fatigue and burn out.
Most carers did not freely choose to become a carer and the role is frequently accompanied by a strong sense of grief and loss. They had plans for their life or for the life of the person they are now caring for. How can they avoid the grief they feel due to the loss of their husband or wife to dementia and the retirement they had planned, or the impact the disability has had on their child and the family? They may be grieving the loss of their career, or of friends and family, or of their financial security.
Recognising the carer as an individual outside of their caring role is critical. They are not just an extra ‘in-home support’ to the person receiving care. They are not invisible. They have a right to a life outside of their caring role. Not all carers want this or will accept that they need this. However, we all have choice even if we take it for granted. Carers should have the same opportunities for choice as all of us. Carers are people with hopes, dreams and goals. Isolation is a reality for many carers but there are things we can do to walk alongside them and make their caring journey more inclusive, less stressful and, most certainly, less isolated. We can link carers with dedicated carer services who are best placed to offer a full suite of dedicated carer support options and the flexibility to deliver them. We can work with them to ensure the resources and support for the person they care for are available today and tomorrow, and that carers can plan for the future with some degree of certainty.
I hope this overview gives everyone a little food for thought. This is not to say that all carers feel the same or want or need the same level of support. It is simply highlighting that there is an impact on carers that must be recognised.
Chief Executive Officer