Burnout and admitting that caregiving is not that easy

Admitting that you are finding something difficult takes courage, especially if it is not ‘politically correct’ to do so.

Which is what makes a couple of videos posted by Julie Winokur and Ed Kashi unique. A filmmaker and a photojournalist, this couple relocated and redesigned their life to look after Julie’s 80+ father, a dementia patient. As active professionals, with a young son and daughter, this meant a change in what their daughter called ‘a bunch of things’. The couple started out their caregiving journey feeling they were ready, that they were experts, only to realize as time progressed that no one can ever be ready for such a task.

What is amazing is the honesty with which they shot the two videos they shared. They admit to the frustration, resentment, fatigue and sheer overwhelm of responsibility, while also saying that they wanted to do what had to be done, and that there were moments that made it worth it, like the days when the father seemed more like himself, and showed a desire to live.

You can read about the videos here or here. The second video, posted here shows a much more fatigued couple, admitting to far more problems. The New Old Age blog post about it is here.

The videos are stark and honest, and equally interesting are the comments of various readers. Many have shown empathy, some have been critical of the couple for sharing their frustration and irritation (I suspect these will be people who have never caregiven, or done so for a very short time), but there are also many who have pointed out that most caregivers face far more stressful situations. Julie’s father was incoherent at times, unable to do things and communicate, as he slowly ‘slipped away.’ He needed full-time attention, but the couple also had an au-pair to help, and did not seem to want for finances. Many caregivers have it worse: they look after elders, crunched not just by demands on time but also money, having to sacrifice their own financial security. Parents being looked after are sometimes uncooperative, suspicious, abusive. They face more physical disability, being unable to walk, being incontinent, requiring repeated emergency trips to hospitals, and so on.

Yes, it is true that every situation is different, and while this couple had it bad, many of the others may have it worse. What I honor is the fact that they shared, and that they did not whitewash away their irritation and frustration. They gave social visibility to the ‘sheer relentlessness of caregiving’, as the blog post puts it.

As part of a scattered community of caregivers, I think we need more honesty about the mental, emotional, financial and physical aspects of looking after elders who cannot live independently.

Unfortunately, persons who have not taken care of others don’t take the time to understand the overwhelm of a task that can only end with the death of someone. Such people end up saying insensitive, judgmental things to caregivers in a holier-than-thou way. Hey, we caregivers are stressed enough–don’t add to it. See this video, read the comments, and learn to empathize. You may need a similar empathy some day.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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