The call came right after lunchtime.
“I’ve fallen again.”
My great-aunt Emma sounded frustrated and frail. Her arm hurt too much to move, she said, let alone pick up the bag of groceries she’d just bought. It might be broken. Could I come pick her up and drive her to the emergency room?
I tried not to panic. This was her fourth fall of the year. How bad was this break? And how would this affect her long recovery from the lung injury she sustained during the first fall?
Emma is the kind of person I want to be when I finally grow up: sharp, indomitable, open to new experiences, independent. And always bandbox neat, often in a cute hat. However, as I waited for her in an emergency room cubicle to come back from X-rays, I realized I’d been in denial. It wasn’t that I hadn’t thought about losing her; as she went from her 80s to her 90s, I knew that was inevitable. But I hadn’t thought about what she might go through before that.
It’s true that aging isn’t exactly what it used to be. Thanks to Botox and Viagra and other medical innovations, anyone with some money can look and act 30 at 50 or 50 at 70. Many boomers are working past 65. Mick Jagger is still strutting around. Age is just a number!
But this approach to aging, however empowering, is a lie. Most of us won’t keep going strong until we’re felled by a painless heart attack in our sleep. Life is seldom so kind.
Unfortunately, our medical system caters to extremes, taking care of you most quickly if you are critically ill, covering you financially only if you’re destitute. Emma’s X-rays revealed a clean break in her upper arm — they put her in a sling and sent her home with ibuprofen — but what happened after showed me how difficult it is for the elderly and their families to navigate health care in this country.
Once she got home, Emma struggled with everything from eating to dressing to washing. Four days later, I got another call: She’d fallen again, trying to get out of the armchair she was sleeping in because lying flat in bed was too uncomfortable.
She escaped with only a scraped knee, but we both realized she couldn’t be alone at night, at least not until her arm had healed. But because she hadn’t required surgery, insurance wouldn’t cover the astronomical costs of a rehab center. Nor would the long-term care insurance she’d been paying steep premiums to for years (unlike me, Emma has never been in denial of her frailty, taking care of everything from living wills to DNRs to funeral arrangements) kick in for at least three months. The doctor told us it would only take six weeks (barring re-injury) before she was out of the sling.
Moving in with me wasn’t an option, and neither was me moving in with her. I could help with laundry, groceries, cooking and chauffeuring, but helping her bathe was off the list, since I have physical challenges of my own. It was time to look into home care.
That process has given me a good idea of exactly how frustrating our medical system can be for most seniors and their families. Between a lack of information on most home care agencies (only agencies that provide skilled nursing get reviewed by the government), a rapidly worsening worker shortage and no financial relief for the services Emma needed, I now understand why one doctor told me a lot of people just wind up putting elders in nursing homes instead of having them stay home.
Not wanting to take a risk on a freelancer on Craigslist, we searched for an agency, even though we knew that was no guarantee of safety. I learned that there are two tiers of services: home health, which includes skilled nursing and physical therapy, and home care, which is getting assistance with hygiene, cooking, errands or making sure a senior with a history of falling doesn’t hurt herself while getting out of a chair in the middle of the night.
Emma’s primary doctor gave us a referral to a home health agency, which provided too much care and not enough. After declaring her homebound so Medicare would pay, the agency started sending physical therapists and nurses — which we didn’t necessarily need, considering I was already taking Emma to multiple doctor appointments each week. What the home health agency didn’t offer was night care, our most urgent need, so we had to go to a home care agency. Medicare doesn’t pay for a penny in that case, so Emma was lucky she had funds set aside.
We had lots of choice: The home care industry has exploded in the past decade. A 2014 Forbes story reported that since 2000, the number of home care franchises has gone from 13 to 56; those franchises now exist in more than 6,000 locations. And according to the National Association for Home Care and Hospice, there are 33,000 home care and hospice organizations in the country.
But researching reputable home care is quite a chore. Many agencies have very little presence online: a website and maybe two or three reviews on Yelp, hardly enough to make a smart decision. We wound up relying on a referral by a state social worker because we were so crunched for time. And that agency was neither reviewed on Yelp or on the Better Business Bureau, though it was listed on both sites.
Luckily, that agency turned out to be a good one, but once we found Emma a night care taker, I saw how our eldercare system treats the people who do the caretaking.
Despite the critical need for eldercare, getting the workers to do it is not easy. Sharona Hoffman, author of “Aging with a plan: How a Little Thought Today Can Vastly Improve Your Tomorrow,” explained to me that the tedious work of caring for people at home carries risks, such as back injuries from lifting a patient after a bath or dealing with a patient who gets violent or handsy due to dementia. The pay isn’t great; the night caregiver we found for Emma confided in her that her take-home pay was about $10 an hour, or minimum wage in California. (We paid the agency who oversaw her $16 an hour.) Unsurprisingly, turnover among these workers is as high as 60 percent.
The shortage is only going to get worse, a phenomenon being dubbed the “caregiving cliff.” According to the Institute of Medicine, by 2030, the United States will need 3.5 million more workers in home care and geriatric medicine. Amy York, executive director of the Eldercare Workforce Alliance, says the organization is focused on “creating a career versus a job” by urging state Medicare and Medicaid programs to raise salaries for such workers to persuade them to stay.
There is also legislative action on workers’ rights, particularly on the state level. On Jan. 1, California cracked down on home care agencies, requiring, among other things, that their employees register in a state database. Although I find the idea of being able to get more information on the person I was entrusting with some of Emma’s most intimate care, like bathing, the consequences of that legislation hit us right away, with care-giving prices climbing to $21 an hour, with a four-hour minimum.
None of the people I spoke to about nonmedical long-term care could offer a solution that would balance workers’ rights to make a living and seniors’ rights not to go bankrupt for the care they need.
“There really isn’t a system to pay for long-term care,” York told me. But, York said, there is some hope for change. In January, Hawaii state Sen. Rosalyn Baker introduced a bill that would establish a universal home care plan. The bill would give seniors and the disabled a daily $70 subsidy for 365 days. Anyone who has paid income tax in Hawaii for a decade is eligible. Presidential candidates Bernie Sanders, Hillary Clinton and John Kasich have all addressed the elder care issue, with Clinton presenting a plan that would launch a government initiative to recruit workers and give tax breaks for family members who care for older relatives.
None of this will likely benefit Emma in the short term, but months away from her 92nd birthday, she has regained the use of her arm and much of her independence. She no longer needs night care, though we have a plan in place when she does.
Even with all the problems that have plagued her in the last 18 months, she remains the woman I hope to be should I make it, mostly unscathed, into my 90s. I may even buy a hat or two. And I’ll definitely have a number of home care agencies on speed dial.
A.K. Whitney is a journalist living in Southern California.