|By Lisa M. Krieger, San Jose Mercury News|
Like one of every six Californians, she was taking on a job that doesn't pay, but costs sleep, savings and sometimes physical well-being.
Her beloved, John, the charismatic flight surgeon and avid tennis player who had wooed her with song and dance, was dying of neurodegenerative disease. Not only was she losing a partner, she was shouldering new responsibilities, from running their
"At least," she said, "he is here at home."
Caregiving can be immensely rewarding, driven by love and dedication. It is also exhausting, expensive and poorly supported by a medical system that delivers life-prolonging miracles, but little help for loving care at home in life's fragile years. Caregiving bankrupts families, isolates loving spouses, delays retirement or forces us to pass up promotions.
The challenges of caregiving are a reality of daily life for more than 6 million Californians who help parents, partners, children or friends -- with everything from meal preparation to taking care of medical needs -- even as they worry about their own futures.
The financial, emotional and physical sacrifice of caregivers is the subject of this installment of the ongoing series on the
Cost of Dying.
Blessings and costs
Joan Valor cherishes caring for her 43-year-old son, Eric, who five years ago was diagnosed with amyotrophic lateral sclerosis, a debilitating disease that causes progressive muscle weakness.
"It's been a blessing to have him here," she said. "Who knows him better than family?"
Once, he held a high-tech job at BMW Technologies, surfed in
So he lives with his mother and stepfather, who sold their home to move to a place in
He credits his survival to his comfortable and familiar
The cost to his family so far:
"Eric is not the problem," said his mother, Joan Valor, 70. "It's the lack of money to care for him that's the problem -- to give him the life he deserves and needs. But we're fortunate. A lot of families don't have what we have."
The family burden
Such dedicated families provide most of the long-term care in
Bearing witness to life's end, caregivers push wheelchairs, ease pain and share stories.