Sunday 27 October 2013

Loneliness and Caregiving

This morning, I stumbled upon an article in the Guardian (UK) newspaper that started like this:

The officials who broke down Joyce Carol Vincent's door were meant to be serving an eviction notice. Instead they found her corpse slumped on the sofa, with the light from the TV still flickering over her. By 2006, she had lain there for almost three years. 

Aditya Chakrabortty writes about the sad death of 38 year Vincent and links it to a recent speech about social isolation by Jeremy Hunt, the UK Secretary of State for Health.  Hunt's speech is titled "The Forgotten Million" - he was talking about seniors in care homes.  

There is no doubt that loneliness is bad for everyone's health.  How bad?  Chakrabortty reports:  

Studies show that chronic loneliness wrecks one's health: pushing up stress levels, increasing blood pressure, disrupting sleep, even bringing on dementia. And, yes, it kills. The Chicago neuroscientist John Cacioppo, who has researched social seclusion for decades, has tallied up the harm posed by common health hazards. Air pollution increases your chances of dying early by 5%; obesity by 20%. Excessive loneliness pushes up your odds of an early death by 45%.

Caregivers are experts in loneliness.  I have been thinking for years now about making friends with solitude - when I was alone at home with Nicholas managing crisis after crisis, I sought solace in my garden.  I hovered close to the telephone and waited for disaster.  This worried and distracted state of being is not conducive to small talk.  It seemed easier, somehow, to talk to plants.  At least they were healthy and they grew if I tended them - something I couldn't seem to accomplish with my son.  (He's much, much better now, I am happy to report!)

Caring for someone you love who is very ill, in pain, confused or desperately sad is lonely work.  But it doesn't have to be so lonely that if we die, we wouldn't be found for three years.  No, there are some people who will offer to be present with us in our caregiving work.  Perhaps there will be just one person who isn't afraid to look your loved one in the eye after a catastrophic stroke.  Maybe there is an acquaintance who offers to be a friend when your husband is diagnosed with early onset Alzheimer's.  These are the unafraid, the champions of tough and compassionate witnessing.  

I remember reading about a study in New York City examining what kinds of help were helpful to the families touched by tragedy on September 11.  The results showed that the most helpful kinds of help were friends who came to the door with food... friends who stayed, listened and weren't afraid to witness terrible grief.  This is worth knowing, because if our society loses these skills, we will lose the ability to give good care and we will all suffer the real consequences of loneliness.

There is much that we can do to reorganise our communities and right now, there are clever people working on social design ideas to combat isolation.  Parks, schools, churches, apartment party rooms... these are all potential sites of deep conversation among friends.  With a little nudging and clever design, we can address the scourge of social isolation.  As Chakrabortty said in his Guardian piece, "the flipside of economic individualism is loneliness."  And if we know that loneliness makes people sick and can even kill, then let's give it serious attention at all levels of society.  The easy, transient connections of facebook or twitter aren't going to cure what ails us.  Authentic, real time spent with compassionate friends will.  

Caregivers know about loneliness, but we're also experts in its remedies, too.  When you have been most lonely in your caregiving role, what helped?  Let's get this conversation started. 

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