Caregiver Guilt – Duncan’s Story

After attending an in-person family caregiver forum, Duncan wrote to share his reflections in caregiver guilt.

In my many years of being a long distance family caregiver and working in a profession that revolves around caregiving, never had I thought that I needed someone to care for me as well. Having been in this journey for a while, I have nursed my mother, I have nursed myself and in my day today job I train the human hands of people who has suffered injuries caused by different things with some soft skills to promote independence.  Attending the in-person caregiver program facilitated by Christina Were changed my life as a family caregiver for good.

One of the creative therapy sessions involved cracking a beautiful mug and putting it back together with coloured glue. To my surprise what I thought was a gentle knock that would break the glass into 2 or 3 pieces shattered the mug into tiny pieces. Piecing it together took a lot of effort and it suddenly dawned on me that like the shattered mug, my emotions had been shattered by my caregiving journey. A journey I consider worthy and would not drop. But, a journey that had taken and takes a toll. I am a perfectionist, and my success is always defined by results. I like results. This makes me a control freak with very little to delegate or rather a lot to delegate but difficulty doing so. Putting the cup back together was very difficult and it took the help of another participant who pushed the tiny pieces together as I held together the rest of the cup. The importance of family and friends in the care journey jumped out at me. In reality though, many family caregivers walk a lonely journey.

Family caregiving is a complicated maze of friends and family and oft fraught with conflict. The less the cooperation I faced, the more controlling I became about my care recipients care. The more controlling I became the more I forgot to care for myself. I needed a break but it felt “wrong” to want a break. I learnt what I was dealing with CAREGIVER GUILT and learnt also is not unusual amongst family caregivers. The realisation that a break does not mean that you have” lengad” the one you take care of was liberating! I deliberately used the Swahili  word “lenga”  because I don’t find the right word in any of the other languages I know to describe the feeling I felt whenever I took a small break to attend to myself. It felt like I am permanent dead beat snob.  My caregiver guilt was also triggered by inability to spend day to day time with my mum because I am her primary caregiver yet a long distance one. The of course my perfectionist tendency and as a result, having unrealistic expectations of myself.

And so in attending the family caregiver education, began a journey of piecing my life together again. Caregiver education is crucial for family caregivers and the worth of attending  the Tunzocare Africa forum remains by far much more than the small amount I paid to cover meals and logistical expenses. I really enjoyed the training and look forward to attending many more.