Friday, October 16, 2015

The prisoner's slave: A hidden cost of disability

One spouse can barely walk at all, but neither their insurance nor any government agency will pay for an electric wheelchair or scooter, and the couple can't afford one on their own.  So both spouses spend most of the time at home, because the disabled spouse can't go anywhere without being pushed in a non-motorized wheelchair by the other spouse.  One is a prisoner of disability, while the other is the prisoner's slave.

I don't think we talk enough about the toll of illness and/or disability on the loved one of the disabled.  In many cases, a loved one gets little or no help in caring for the ill or disabled person.  My mother got little more than a few hours of freedom every week when my father, who had some form of dementia, went to a "day program"--other than that time, she could hardly leave the apartment.  Others have had to quit their jobs in order to care for loved ones, endangering their own financial security.  Still others have been sent home repeatedly with loved ones who were discharged from a hospital or institution despite being clearly too ill and/or disabled to be cared for outside of a hospital or institutional setting because, in the U.S., at least, many of the institutions that used to care for the severely disabled no longer exist.

Surely there must be a better way.  Why do these problems always seem to slip under the radar and go unnoticed when it comes time for policy-making?  Why do so many seem to think that it's perfectly acceptable, even laudable, for loved ones of the ill and/or disabled to become their unpaid 24/7 live-in health aides, with scarcely any time, or financial resources, for lives of their own?  I think this is a major challenge that the U.S. (and some other countries, as well) is unwilling to deal with, probably because that would cost money, as it does in the case of special education, and no one wants to pay.  But sweeping this problem under the rug won't help, because it will only get worse as the population ages and more and more of us need help.


Blogger Jeanne Barrack said...

The current issue of AARP magazine focused on the "care" of caregivers. But what can you say about a government that can't give a small COLA because the cost of gasoline has gone down? But think about the cost of food, rent and prescription meds? That surely has gone up!
Hope this comment went through.

Thu Oct 29, 05:52:00 PM 2015  

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