Fruits of frustration

Frustration is inevitable when your life changes very suddenly. People with disabilities as well as caregivers should consider how they express their frustrations.

As persons with disabilities, we do become frustrated with our own inabilities; at those times cute aphorisms like “otherwise enabled” do not help much. I watch rugby, soccer, cricket, tennis and ballroom dancing on TV and I wish…

Then I console myself with my undertaking to run the 400-metre hurdles in under 10 seconds … in about 50 years’ time when I have my new body. When my friends are feeling down I invite them to join me – we make a date.

Frustration and pent-up anger is very much part of our lives and the irony of it is that we tend to vent on those we love most; those who truly care about us and those who care for us. If one of those who love us – a spouse, mother, sister, daughter or very good friend – is also our carer, this becomes a double whammy. When we take out our frustrations on the ones we love the most, love usually prevails … but at what cost?

A lot has been written about “caregivers” who abuse care-recipients, but I recently came across an article that studied the effects of abuse by severely disabled adult care-recipients on close-family caregivers. The study was done on 147 family-member caregivers, of which 129 were women. Just over half were mothers, but the study also included husbands, fathers, grandparents, wives, daughters, sisters and aunts.

The average caregiver age was 56, they were largely well educated and they were drawn from several race groups. The common factor was that all the caregivers were novices. They found themselves in the deep end of an intensely emotional and physically challenging situation, with no training and often little or no support in place. In fact, sources of abuse included the very family and friends who they looked to for support.

The study evaluated experiences over the preceding 12 months and divided the caregivers into two groups: those who suffered actual abuse and those who cared for their disabled family members under more amicable circumstances. In the first group, the extent and intensity of the abuse was measured on a scale and included aspects such as “demanding and bossy”, “hateful attitudes” and even physical assaults.

The findings showed that there were no recorded incidents where the caregivers abused their family care-recipients and 71 caregivers reported that they were also not abused. Of the 75 caregivers who reported abuse, 45,6 percent of the abuse experienced were described as being “yelled at or insulted”.

Around 12,9 percent of the caregivers described the experiences as receiving “threats to hit” and another 12,9 percent were described as actually being hit by a perpetrator in the previous 12 months. The majority of the perpetrators were care-recipients, who accounted for many incidents of yelling and insults, and for most of the threats of hitting and of actually being hit.

Members of the family collectively accounted for the remaining (28,6 percent) incidents of verbal and physical abuse reported by the caregivers.

For both groups the following outcomes were evaluated: caregiver depression, caregiver life satisfaction, caregiver health and caregiver burden. In both groups, the care-recipients were also evaluated in terms of the extent of their respective functional deficits and their levels of agitation.

The outcomes in both groups were interesting in that both groups were impacted by each of the four evaluated outcomes. Depression was evident in both groups, but more so in the abused group. Both groups experienced reduced life satisfaction, but this was more evident in the abused group.

The abused group also showed greater evidence of increased burden and physical ailments. The service of caregiving therefore had a definite impact on all the caregivers in the study and this was exacerbated in the group who suffered abuse.

What can we learn from this? The study implies that a relatively large percentage of family caregivers may experience abuse and that this has an adverse effect on the family caregiver’s wellbeing and psychological adjustment. Parallel research suggests that care-recipients may be at risk of abuse from caregivers when care-recipients require intensive support and/or when caregivers have high levels of depression, ill health and distress.

So, what needs to be done? A comprehensive plan, possibly in conjunction with QASA, should be developed in order to better assist family caregivers in their role, by effectively giving them an outlet to express their questions and concerns.

Professional support would help to reduce conflicts and subsequent caregiver health and wellbeing-related problems. With interpersonal training, family caregivers have the potential to help reduce and prevent early or unnecessary removal into assisted living facilities and could reduce the high costs of formal healthcare over time.

To those of us who are frustrated with the limitations imposed on us by our “otherwise enabled-ness”, let’s try and work on our frustration and anger issues. Instant gratification – “I want it all and I want it now” – is not a helpful response; let’s work towards delayed gratification instead. The choice is yours, so make it for the sake of your caregiver’s wellbeing as well as for your own.

Ida’s Corner is a regular column by George Louw, who qualified as a medical doctor, but, due to a progressing spastic paralysis, he chose a career in health administration. The column is named after Ida Hlongwa, who worked as caregiver for Ari Seirlis for 20 years. Her charm, smile, commitment, quality care and sacrifice set the bar incredibly high for the caregiving fraternity.
email: georgelou@medscheme.co.za