As a Trustee of Carers UK, who is also active within my local community, I take every opportunity to raise awareness of not only carers but past carers, particularly their needs at the time of their transition, when their caring role ceases.

As an older past carer who cared for my husband and my mother, both with dementia, I understand only too well, the multiple responsibilities one is accepting, when one takes on the role of a carer. One’s own personal life and activities take a back seat, and the focus of day-to-day life becomes the individual that one is caring for

For over ten years now I have been facilitating an ‘expert carers group’ for carers of people with dementia. This group gets together twice a month at a Caring Café organised by a local charity. I have made that journey through the years from carer to past carer and also shared that journey, via the group, with many other carers. I used to think, when I was caring for my husband that, just as he was dependent on me, I was dependent on him.  My life was equally dependent on him because my daily life was so controlled by the responsibilities of caring. My daily routine had completely changed from before I became a carer and therefore the life we led was one of mutual dependency. This view of caring is perhaps a way of understanding why, when the caring role ceases, there is more to confront than bereavement.

Whilst within one’s caring role, one develops ways of coping. The carer may be fortunate enough to become a member of a community of carers, whether it be in person, such as through a local carers group or an online forum such as a forum organised through Carers UK. There are various ‘models’ of support groups and they can be so valuable over the course of caring.

What a lonely place it can suddenly be for carers when they become a past carer. There are the immediate arrangements to be made following an individual’s death and these activities keep one going initially but suddenly, a realisation dawns; you are on your own. The support systems, the community of carers, you feel you are no longer a member. The funded local social support activity may only be open to carers. At such an important stage for the past carer, they can feel discarded and no longer valued. At our Caring Café, we can welcome past carers for around a year after they cease to care. This flexibility is so important. Continuing attendance provides comforting support to the individual while they make decisions about their future lives.

Carers UK recognised the importance of supporting past carers through this transitional period. By caring, carers contribute so much to society. Carers themselves deserve to be acknowledged and their needs recognised when their caring role comes to an end. It can be very hard for an individual to adapt and pick up the threads of their lives, perhaps after many years of caring.  I myself recognised the passing of years, one’s own older self and reduced resilience. Yes, we are all different, some more resilient than others but those past carers who need extra support and care, they deserve it. 

Margaret Dangoor