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Working caregivers

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One thing employers, insurers, business groups, aging policy specialists, agents, consumer groups and others need to work on is to keep the pressure to be in two places at the same time from tearing family caregivers and other caregivers apart.

On the one hand: Hoping for anything to get better in the area of informal caregiving over the next 50 years may be about like hoping death and taxes to go away. Maybe, realistically, all we can hope for is that most of the frail and disabled older people we put out on the sidewalk have an awning over their portion of the sidewalk.

But, on the other hand: It seems as if there might be low-cost ways to improve unpaid caregivers’ lives if we acknowledge that many have jobs, that it’s hard to keep jobs, that it’s often hard to use and enforce time-off laws, and that decent, loving caregivers often have no practical choice but to put their jobs first.

Related: 7 ideas for improving long-term care insurance

This topic came up recently, when I was talking to a caregiver about a complicated caregiving situation. In this situation (many details changed to protect privacy), a mom has a 10-year-old son in New York state who often has allergy attacks.

The son has a severe attack about once a month. Whenever that happens, and the basic treatments the school nurse can provide don’t work, the mom has to take off work to take the son to the emergency room. Of course, some variation on that story affects American working people caring for loved ones of all ages millions of times each week.

So, yes, we have to be practical. But, on the third hand: Burning out informal caregivers out, and threatening their ability to sustain themselves, is not very practical.

Here are some ideas for improving that situation:

Employers and society need to make a point of telling managers that letting workers use employer time-off programs to deal with family caregiving emergencies is a good thing to do. If employers really can’t afford to give workers the time off, then we have to set up more realistic family leave rules and programs that have some connection with reality. But, if some managers are resisting use of family caregiving leave simply because they don’t like it: Society can’t afford that kind of resistance any more.

We somehow have to reshape our culture to get away from the absurd idea that keeping a job is a trivial thing, and that transporting loved ones to the emergency room once a week has to take precedence over staying employed. If we as a society really believe that earning a living is a trivial thing for family caregivers, then we need to put our money where our shaming is and create a special pension program for caregivers, to ensure that they can support a decent standard of living while giving up paid work in order to provide informal care. If we’re not willing to fork over that cash, or the equivalent in paid or volunteer caregiver support services, then we need to do what we can to fix our working caregiving shaming culture.

We need to change any laws and other business supply barriers that turn informal caregivers into health care tax services simply because affordable, flexible alternatives are unavailable. If, for example, all we need to do to create a new supply of paid health care taxi services is to create liability shield laws and practical certification rules for the service drivers, then we need to do that. 

We need to do whatever we can to support and expand care coordination services, so finding paid professionals to fill in the gaps is as easy as calling the pizza place to order a pizza. Care coordination has to be an affordable thing everyone knows about, not a luxury that the rich learn about along with the best places to get pole-caught fresh salmon.

Allison Bell is the health channel editor for


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