Opinion

Beyond the immediate

Karolina Gerlich, CEO and Founding Director, National Association of Care & Support Workers Ltd

Very little is said about care workers supporting their clients’ family members. It has been many years since I started my first role in social care, and with each person I worked with I found myself extending my support to the people close to them. This is something that many care workers talk about as a significant part of the job, and it occurs in every care setting.

Over the years, I have observed and supported many families transitioning between not knowing what social care really is to becoming heavily reliant on it. I was there with children experiencing the feelings of loss and grief that often come when coming face-to-face with dementia. I have heard desperation and despair in the voices of family members of those with Parkinson’s disease or multiple sclerosis.
Physical and mental health issues are experienced and dealt with by whole families and support groups, not just the individuals who receive the diagnosis. As our society is still prejudiced and misinformed about many conditions, these issues often slip into the ‘taboo’ section of our day-to-day communications.

I have had plenty of conversations where family members shared their feelings of isolation; they did not feel able to share with anyone, besides myself, the emotional struggles of living with and caring for a loved one.

‘Care’ seems to have become a dirty word in itself, a description of weakness and inability on the side of the recipient, and task and money on the side of the giver. For me, care means the love, warmth and kindness that we all deserve.
There is a variety of topics family members find difficult or even impossible to speak about, even to other family members or their friends: aggressive sexual behaviours, pressure from children to move the spouse to a care home, or the sadness from feeling forgotten, to name a few.

Care workers are very often in a position to spot these struggles early on and offer support. This requires high levels of empathy and emotional intelligence; dignity, pride and ego are often also at play here. Also, we are often on the receiving end when the stress and negative feelings that have been held back suddenly pour out of a person.

I am yet to hear about this being acknowledged in care packages, care funding, care plans and training. It can be the most difficult part of a care worker’s job, yet one for which care workers are neither prepared nor paid.

Offering psychological support is very demanding, but care workers know it has immense value ¬– the happier the family, the better the well-being of the client. However, it takes a lot of time, and a balance must be struck between caring for the client directly and seeing to the general well-being of their family. This is not accounted for in the length or frequency of visits.

There are many uncertainties here: how providing this peripheral care affects care workers’ mental health, and how the current high pressure, care-by-the-minute environment is affecting the ability of care workers to fulfil this vital role. Should we be commissioning family support?

Care needs to be holistic and relationship-centred. We need to make more space for conversations about the happy moments of clients, their families, the people giving that care and their families. Luckily we are doing this with an increasing frequency. We now also need to open up more about the experiences and consequences of physical and mental health issues on people that use social care, care workers and families and friends. We must share and support each other and recognise that care work goes beyond personal care and also beyond the individual whose name features on the care plan.

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