by Juliet Holt Klinger
12 November 2018

For many years, there has been some controversy over using the term “burden” to describe the effect that caring for someone living with dementia has on the person closest to them. In fact, the phrase “caregiver burden” is now largely considered a no-no for those of us who write about dementia. In that context, “burden” has a negative connotation that becomes inevitably connected to “caregiver.” Caregiver itself is becoming a term of the past, as it reflects only a one-sided relationship.

We now frame things positively in terms of a shared life of connected people who are care partnering and learning to live together with dementia. I’ve always been a fan of changes in language to affect changes in cultural views.

But sometimes I have to wonder if, by cleansing the language, we have forfeited some of the important focus on the very real toll and weight that the disease of dementia can place on a family/friend system. That weight is heavy; a pervasive, dense thing that seeps in and interferes with the once normal ways of connecting, conversing and communing.

Brian LeBlanc likes to call it a “fog,” and I recommend his YouTube video for a better understanding. To ignore the frustration that comes with trying to navigate through that fog is to discount the hard work and adjustments that need to be made by both the person living with the disease, and those who love them.

The role of a care partner is hard, especially if one is truly trying to partner. It can be difficult, time-consuming and stressful and yet many do not think of it as a burden. There is almost a spiritual sense to this vital duty. For many, it is perhaps the most sacred gift we can give to another human.

A dear friend of mine had help from hospice to care for his mother at home during her last few weeks of life. Although they were some of the toughest days of his life, my guess would be that he would not trade the experience for anything in the world. He cherished the closeness that the work on her behalf brought to him and was proud of the comfort and care he provided for her. Some of the most beautiful testaments you can read are the words of gratitude that persons living with dementia share about their trusted care partners.

We must find some way to acknowledge the very real wear and tear that can come along with the work of care partnering, without always casting it as a burden. So I wonder, is there a new term that we could use that speaks to the weight and also to the lightness?  

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