Wednesday, July 15, 2015

Does the Story Ever Change?

This winter, I read the memoir written by Stephen Hawking's ex-wife, Jane, about their life together, their family, and the progressions of both his disease, and his fame. It was fascinating, not only because he is a fascinating man with an amazing brain - and illness history - being one of the few people who has survived so long with ALS, but also because of her, and her story. I ended up reading it from the perspective of a caregiver because so much of their story was about what she gave up to care for him, and it mirrored so much of what I see with caregivers and the elderly today.
By the time they married, he was already suffering the effects of his illness, and she took him on knowing it. However, at the time, doctors thought that he would only live a handful of years and die young, so I imagine she thought it was worth the extra effort of a husband with such a serious illness - wanting to have time with him even though it wouldn't be long. Instead, he ended up living, for forty years, with all the attendant difficulties, symptoms, and struggles of his illness - and she became his caregiver.

It broke my heart to read about how much she took on, and how long she managed their lives and his care, without much help. People assumed she was coping, and didn't offer help - even his own family didn't think she needed assistance; social structures assumed they had money because of his fame, and wouldn't help very much; Hawking himself refused to accept care from anyone else except her, and was in denial about how much care he actually required; and she had to fight for every bit of assistance and money they received. She ended up almost destroying her own health for his care.

Granted, this all started back in the sixties and seventies, before there were laws about disability access, and much support for caregivers. However, it struck me that things don't seem to have changed that much, even though we're in a century of miracles - the Internet, people living in space, instant connection around the world, and other technological marvels. We still live in a culture of assuming the family will care for the ill and elderly without needing outside help; expecting people to spend their last dollar before social help will kick in; and, it seems, willfully ignoring the massive challenges and struggles that caregivers face. It is unfortunate that things have changed so little in the last fifty years.

I do see changes that are being made, programs that are coming on line to help caregivers, organizations formed to fight for them, and provide services. The effort is just so woefully behind the problem, though, and I still see caregivers going under. We need more stories like this, to show in plain language the toll that caregiving takes on a family: policy makers and politicians need to hear these stories, so tell yours whenever you have a chance. Go to and tell them your story - they'd love to hear it, and they will use it to help make as many changes as they can.