Saturday, April 29, 2017

The Loved Ones

As someone who tries to use language precisely, I dislike it when terms stray into inaccuracy. For example, the phrase “making love” has tended to annoy me for years, as it is sometimes used as an all-purpose stand-in term to describe any sexual intercourse. Although I’m sure such inaccuracy isn’t the intention (people just want a euphemism), the term nonetheless seems to imply that sexual activity is somehow inherently loving. However, this pet peeve is a bit flippant compared to a somewhat similar example I’ve noticed more recently.

In my recent work on dementia caregivers, one can end up thinking quite a bit about the best way to use language in describing patients and those who care for them. The majority of dementia carers who aren’t professional carers are either children or spouses of the patient. However, you do see siblings, sometimes nephews/nieces, or even friends or neighbours. “Carer” or “caregiver” (as opposed to “family member”) works fine, as it describes what they do.

What then is the best single collective term to use for those being cared for? “Patient” or “person with dementia” is fine, but doesn’t capture who they are with relation to the carer. “Family members” covers most, but not all, patients with unpaid carers. “Loved ones” looks like a good one -the patient doesn’t have to be a family member of their carer for us to call the patient a “loved one”. And does it not capture the idea of care as loving? I recall seeing a video of an elderly man caring for his wife with a caption along the lines of “If this isn’t true love, what is?”

One afternoon, while speaking with a carer, she took the opportunity to share some of her thoughts and feelings. She had been caring for her husband with dementia for a number of years. After speaking more broadly about caring for her husband, she came to the topic of love and marriage: “You know, sometimes I ask myself whether after x years of marriage, do I still love this man?…And really, the answer is no. Well, you’re a young man-I suppose it’s something you’ll understand when you’re older…”

Another carer (again caring for her spouse) spoke of how she no longer loved her husband at a gathering of carers. She added that it’s not something she felt she could say to her (adult) children. Maybe she just wanted to get it off her chest when speaking to other carers, or perhaps she wanted to see if she wasn’t the only one who felt this way. On hearing what she had said, another carer (caring for a parent) suggested that maybe the first carer didn’t like her spouse any more, but she did love him. The first carer who had spoken of her feelings restated them.

I can see how people might identify with the carer who made the “not liking, but still loving” suggestion. Perhaps there is a temptation not to take these statements about an end of love at face value. We could be suggesting that carers perform love, even if they don’t feel it, if we say things like “If this isn’t true love, what is?” But if we try to downplay these feelings (or lack of feelings), are we not also downplaying how, in some cases, there is great social pressure to stay in the full-time carer role? (Particularly if society at large is not giving them enough help). And are we not more generally downplaying the level of altruism such carers are showing?

If caring for someone you love is heroic, caring for someone you no longer love is more so.

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  1. Nice piece. Very direct. Reminded me of this book