Held Hostage by Life

My father calls hospice “hostage” and it certainly felt that way to me today. For an organization that purports to be there for the dying and the families of the dying, they are giving me a hard time. Remember, this is the same organization that kicked me out of their grief group for not grieving enough, so for me to expect consideration is a bit foolish. Still, after numerous phone calls to coordinate calendars, we had set up a visitation schedule for the nurse’s aid to come bathe and shave my father that will suit all of us (Wednesday and Saturday mornings), and today, just as I was walking out the door to go to my dance class, the woman called and said she was on her way. Huh? The last I looked, Tuesday came after Monday. Wednesday is still scheduled for tomorrow.

I told the woman about the situation here, about all the calls we made to set up a schedule, and that I wanted her to come on Wednesday as planned. She said it was not possible, then added, “You’ll have to wait until someone dies before you can get the schedule you want.” That comment sure took me aback. Aren’t hospice workers supposed to be tactful with the people they deal with? And aren’t they supposed to make an effort to help us in a way we need to be helped? Apparently not. (When I expressed my feeling about her tactless remark, she put the onus on me, saying she understood that caregivers were under stress. I didn’t appreciate her patronizing attitude, either, especially since my only stress came from her tactlessness and her refusal to follow the schedule we’d set up.)

The person who came to sign us up told us that Medicare gives them $5,000 a month to spend on each hospice patient. Even assuming astronomical costs for administration and a fifteen-minute visit from a nurse once a week and a half-hour visit twice a week from an aid, and adding in the cost of my father’s minimal drugs, there is still most of the money available to hire people to come when we need them. But no, they can’t do that. And so I am being held hostage by their inflexibility and tactlessness.

Then there is the matter of my car. Three months ago, I spent a small fortune to get the thing fixed, and apparently I got sandwiched between a crook and an absentee owner — the felonious employee pocketed the money while the owner was off taking care of family business. The crook did minimal work, just enough to get the vehicle moving, so now my car is again out of service, and the owner of the business is scurrying around trying to fix his business and my car at the same time.

Yep, felt like a hostage today, trapped by life in situations I neither created nor abetted.

The best things about today were my dance classes, of course. They are the best thing about every day. It’s possible that I am taking all this hostageness too seriously, so I’m going to forget it now that it’s out of my system. Instead I will bask in the over-heated glow of a body that did what it was supposed to do — stretch and bend and move and dance.

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Pat Bertram is the author of the suspense novels Light Bringer, More Deaths Than One, A Spark of Heavenly Fire, andDaughter Am I. Bertram is also the author of Grief: The Great Yearning, “an exquisite book, wrenching to read, and at the same time full of profound truths.” Connect with Pat on Google+. Like Pat on Facebookrom

Tagged: caregivers, hospice, medicare and hospice, what medicare gives hospice