Give and Take

Keith has dealt with the issue of hiring personal care attendants his whole life. It's an odd thing to select the stranger who is going to take care of your most personal of business. From my two years of observation, there are, for the most part, two categories of people who enter the personal care attendant field: caretakers and caregivers.

Caretakers look at this work as a job, just something to keep gas in their tank and a bit of money in their pocket. They start out as fairly pleasant people who do everything on "the list" and then head out the door at the end of the shift. After a month or two, when they feel comfortable with the routine and have built up some trust, the bad habits begin appearing. Showing up a bit later each day, doing the minimal work, making themselves 'at home' on the job. There are countless times that I would open the door to the bedroom and find attendants sleeping or watching TV. Or they would leave the house to run a quick errand for Keith and disappear for a few hours. Or, as with one attendant last year, steal checks and attempt identity theft. (Happily that guy is currently awaiting trial, though it's been a Herculean effort to get the authorities to care about the crime). These 'takers' are sliding through life, preying on people whom they believe are weak and taking advantage of a system that does not care.

On the other hand, Caregivers, are a completely different type of person. These folks have genuinely chosen this work as a career, perhaps even a vocation. You can tell the difference almost immediately. Even during the interview process they are keeping an eye on Keith and looking for ways they can be of service. Contrary to the 'takers', these people are always attentive to detail and have a giving manner. I never have to question their commitment to Keith or wonder if he was safe in their care. When Keith went into the hospital on February 18th, his primary attendants Jen and Bruce, continued their care for him in the hospital. Jen's background as a Certified Nursing Assistant was invaluable as the stay in the hospital extended from a few days to a few months. This is when the difference between give and take became so apparent to me.

Once Keith came home, we had to find more attendants since Keith required 24/7 care with the addition of the ventilator to our life. As we soon discovered, the medical equipment sorted out people fairly quickly so we were able to assemble a good team of people from the ever-reliable Craig's List. Unfortunately, this also doubled our monthly out-of-pocket personal care attendant expenses. We consulted the Humana/Medicare insurance manual and saw that his policy allowed for a moderate co-pay for PCA expenses with 'in network' agencies and 80% reimbursement of PCA expenses with 'out of network' agencies.

We contacted Keith's insurance provider to get a list of home healthcare agencies so we could start the process of finding agency attendants and hopefully reduce our expenses. What a fool's errand. Half of the agencies we called do not honor Medicare. Those who did accept Medicare could either provide a PCA who did standard caregiver duties, but would not provide any medical help as required by the ventilator. They directed us to agencies who provided medical care, but those folks would not perform any personal care duties. What we needed was a hybrid: a personal care attendant who is (or could be) trained to do the medical duties related to the ventilator and trache. Apparently this does not exist on the institutional/agency level.

So, until we can open our own heavy home healthcare agency, we'll stick with Craig's List and our retinue of caregivers. I advise all of you to begin thinking about your own network of givers now, before you are forced into a system that is not prepared to handle the brave new world of care that is required by an aging population.