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$450 Billion: What Family Caregivers of Elderly, Disabled Would Earn

$450 Billion: What Family Caregivers of Elderly, Disabled Would Earn


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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12:27AM PDT on Jul 20, 2011

Thanks for sharing.

11:50PM PDT on Jul 19, 2011

Do you know someone who is a caregiver for someone they love?
Most of us do. The most wonderful thing you can do is offer your help, and give them some time for themselves, knowing their charge is in good hands. This is what they really need, time to regenerate to face tomorrow.

11:50PM PDT on Jul 19, 2011

Do you know someone who is a caregiver for someone they love?
Most of us do. The most wonderful thing you can do is offer your help, and give them some time for themselves, knowing their charge is in good hands. This is what they really need, time to regenerate to face tomorrow.

11:05PM PDT on Jul 19, 2011

i gave up everything to care for my mom. my dearest friend took care of her dying mother with her three mentally challenged kids in tow. we have an absolute duty to care for our children and those who raised us. what to do when a catheter needs changing.... CHANGE IT. i helped a woman care for her husband who has alzheimers. the minute he qualified for medi-cal, she dumped him in a nursing home and has taken two vacations in the past month. she now has extra money because she still gets his social security. why is anybody sitting around calculating how much money our service to our loved ones is worth.

10:42PM PDT on Jul 19, 2011

We are currently facing such a situation. My father in law is 90 years old, recently diagnosed with pancreatic cancer. My husband and his brother tried taking care of their dad at home. Neither of the are trained in any way to take care of a catheter, or to lift and turn someone who cannot do it himself. My husband lost twenty pounds in a month and ended up in the ER for dehydration. My father in law elected to go to a nursing home, himself. My husband and his brother are there every day to see that he gets what he needs. Please don't criticize someone until you have walked in their shoes. You don't know what it is like until you try it yourself.

8:44PM PDT on Jul 19, 2011

I have this to look forward to?

8:03PM PDT on Jul 19, 2011

I've had the heartbreaking job as a caregiver. I worked long hours for very little pay.

6:38PM PDT on Jul 19, 2011

Care is not part of the current $$ dominated US vocabulary.

6:37PM PDT on Jul 19, 2011

You try to do what your supposed to do; it will break your soul

You will never see life the same, you will have a respect for family caregivers you never had, until you were them

I know to well

4:45PM PDT on Jul 19, 2011

The key word here is 'affordable' when looking at job? not enough to feed them or yourself decent food? gas prices so high you can't fill up but once a month? What would you call 'affordable?

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