A new study by the AARP, estimates that, for those 40 million Americans caring for an elderly or disabled loved one, their unpaid work is worth $450 billion a year. That was the estimate for 2009; in 2007, the estimate for family caregivers’ unpaid contributions was $375 billion — in other words, the cost for 2011, could be even higher.
As Lynn Feinberg, who co-authored the AARP study, says, families face a huge burden and are liable to suffer from depression, illnesses and social isolation:
“They will burn out, they will get sick, and there will be no other option but to place someone in a nursing home, which is what nobody wants.
As people are living longer thanks to the advances of modern medicine, family members are required to perform even more complicated medical procedures for loved ones at home. NPR gives examples of adult children and others who are caring for parents and spouses and facing situations like that of a man taking care of his mother, who has MS: What to do when her catheter needs changing?
For many years, my grandmother, Ngin-ngin, lived at home. Her five children all contributed to her care and were able to provide a live-in aide (who had to speak the same rural Cantonese dialect as Ngin-ngin, who did not speak English). When the aide went on vacation, one of my aunts and my dad spent the nights with Ngin-ngin but this was awkward for my dad, as Ngin-ngin would not use the restroom in his presence (resulting in interesting arrangements).
We’ve all heard so many horror stories about nursing homes and my dad’s family was lucky to be able to provide high-quality care for Ngin-ngin. I’m sure this played a huge role in her living till she was 103. My late mother-in-law spent her last years among hospitals, rehab centers and nursing homes in New Jersey’s affluent suburbs. After seeing how my family had rallied round Ngin-ngin, I found the care my mother-in-law received impersonal and simply lacking. Frankly, the only way I could think of providing better care was if we spent hours at her side.
That was not possible, as my husband and I are the only caretakers for our 14-year-old son Charlie, who’s moderately to severely autistic. My mother-in-law’s last years unfortunately overlapped with Charlie becoming an adolescent who required (as he always will) 24/7 care, with people who know how to handle severe behavior issues (including self-injurious behavior) in someone who has very limited speech and communication abilities. Lots of physical exercise and activity is, we have learned, key to helping Charlie. This means biking at least 20 miles a day in searing heat, rainstorms and snowfall and running and walking a couple more miles. When Charlie was younger, we did hire sitters and therapists to care for him, and you won’t be surprised to hear that the rates we paid were quite higher than that for the average sitter. Charlie also requires specialized medical care, mostly from doctors and a dentist who are not covered by our insurance.
We’re lucky that we both work full-time and have flexible work schedules, so we can take care of Charlie. Many families do not. Many families also have children with far more complicated medical issues than Charlie has, like Erika who writes about her daughter Izzy, who has Angelman’s Syndrome, at The Flight of Our Hummingbird.
Yet, NPR reports that the US faces a shortage of home health care aides, at a time when they couldn’t be more in demand:
Last week, the Obama administration joined labor groups calling for the creation of 2 million more jobs in home health care, plus a new visa for immigrants willing to enter the field.
What do families do when they can’t pay for those aides or when they don’t qualify for such support at home? Struggle alone? Cut corners, quit jobs? This — leaving a disabled child in the ER room of a hospital — is not the answer, but making affordable care options available is, and also giving family caretakers the support they need to do their unpaid, unsung job.
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