Reflection On How Care Partners Functions As Invisible Cornerstones

The main findings indicate how cares partners function as invisible cornerstones. In general, there is a silent acceptance of the situation, even though many care partners experience severe burdens in their care giving. They need to push to get the help they are entitled to, and many of them go without help for years. Different dimensions of the collaboration are described, spanning a contrasting continuum. Common experiences, for example, include lack of structures and lack of flexibility in the service delivery. The participants take on unwanted roles, and emotional work is a common experience in the care partner role.

1. Invisible cornerstones

The care partners had low expectations of home care services and patience with the lack of resources. One care partner explained how his brother

but as he says: if I prepare the food ... (…) then they may have time to sit down while she eats. (Care Partner 6, son)

This care partner also expressed understanding of the fact that there are many people in need for help from home care. When the participants pointed out areas with potential for improvement, it was on behalf of the service user, not on their own behalf. This one-sided focus was also apparent in relation to the home care service: only one care partner expressed that he felt acknowledged by the home care staff.

In general, there were few explicit requirements of the home care service, and the overall attitude was gratitude for the help received or acceptance of the status quo. Another common factor among care partners was the amount of time that passed before they sought and received help. Eventually, when they sought help, it took time to be heard and to receive the necessary help. Some care partners even felt that they had to push to get the help they were entitled to:

They did not really realize how wrong it actually was, it seems like the more you push for it, the more help you get…(Care Partner 1,