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 changecoordinate 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.


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 Facebook.

14 Responses to “Held Hostage by Life”

  1. rami ungar the writer Says:

    Hand in there, Pat. We’re all rooting and praying for you.

  2. rami ungar the writer Says:

    Hang in there. I meant hang in there.

  3. Paula Kaye Says:

    I went through some of this same BS with the hospice that took care of my husband. The nurse we had (she came once a week) was wonderful. I tried to set up other people to help but I got so fed up with the changing schedules all the time that I just gave up. This hospice was paid a little over $4,000 a month for ME to take care of my husband. Of course, I got his meds and medical supplies but that didn’t come anywhere close to $4,000. After my husband’s death I complained. Even wrote a letter to the corporate office. Do you know what they told me??? NOTHING…they never answered my letters at all. Didn’t even acknowledge me. I have complained in the past to McDonald’s and Walmart and both times got a letter in return mail to acknowledge my letter and to let me know they were looking into the matter. But Nothing from Hospice. I am horribly disappointed but I thought it was a local problem. Guess not, huh?

  4. beccaswope Says:

    Pat my friend: I can just about guarantee you that the hospice could be committing financial fraud, by keeping all the money they are given per patient, and doing as little as possible whenever possible. You need to report them, immediately. There is no excuse for this type of behavior in a hospice organization. The hospice that helped me take care of my late husband in 2004 NEVER acted like this. This is actionable. Call a lawyer. Not kidding.

  5. Malcolm R. Campbell Says:

    Maybe you need to double-up on the dance classes to make up for the hassles of hospice and car repair. When my mother had aides helping to look after my father, she had similar scheduling problems, the worst being that people simply didn’t show up.

  6. Kathy Says:

    You may recall the Terri Schiavo case, well, her brother is the guest on Women of Grace this week and very interesting about how different Hospice Centers can be – some rush you toward death for budget or philosophical reasons – others are more conciliatory toward the patient’s and/or family’s wishes. Something to look into.

    • Pat Bertram Says:

      I’d forgotten about that case and so I read up on it. Oh, my. Such a tragedy. Isn’t it odd that her whole life, even her disability and dying were all focused on eating problems. Poor woman.

  7. Sam Sattler Says:

    Pat, we have had two wonderful experiences with hospice here in Texas. It sounds as if there are vast regional differences between locations when it comes to getting quality care from hospice. I had not considered that before reading what you had to say here, and I consider us to have been very lucky with the care we got for our two family members before they died.

    • Pat Bertram Says:

      I’m glad you had such good luck with hopsice. I liked the one we had for my life mate/soul mate, so when he died, I donated his car to them. But I don’t like this group, though the nurses so far have been great.

  8. Sherry Says:

    Wow, that would’ve thrown me too. I’ve heard many praise Hospice but I was less than impressed in my part of Texas.
    They were “efficient” in their care for my husband but that was about it. They called 56 days after he passed wanting to know if I wanted to talk and said he’d call every Friday. That was the last time I heard from him. I called and left him 2 voice messages and another message with his new trainee. Everyone grieves in their own way, especially around others and
    they had absolutely no right telling you otherwise. Hang in there girl & Dance 😉

  9. lvgaudet Says:

    That was an unbelievably callous thing for that woman to say to someone who is caring for a dying loved one. Hospice is not for people with long term disabilities and illnesses. It’s an end of life care organization.

    And after working so hard to get a schedule, for her to tell someone who needs their care that they have to wait for someone to die before they will honor their agreed to schedule, well, um, aren’t people in their care dying all the time? Isn’t every single one of their clients on that particular waiting list? She might as well have told you that they can honor the schedule they agreed to just as soon as your father passes away. This woman’s job may have made her very cold to the suffering of her clients and their families, but you would think they would have some standards in how to and not to talk to the people they deal with.

    I think I might simply say next time (without giving the woman a chance for rebuttal) that oh, but today is Tuesday and the appointment is for tomorrow and I’m sorry but I won’t be here this afternoon, and hang up before she can respond. Then not answer the phone when she calls back. But that’s just me. Of course, if I was really ticked off I might have apologized during that other chat with an “I’m so sorry my father isn’t dying fast enough to suit your needs.”

    Pat, I really am so sorry that these people are making an already very difficult situation worse. It sounds like they still haven’t learned how to deal with people and treat them like people.

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