June 15, 2017 This was just written by a woman who has been in business and is not at all happy with her Hospice care givers. Reprinted with her permission.

I am in a war. When you are dying the norm is that you should be a victim crying in the corner… and if you are happy, the joy killers will come after you….

Dying missives
From Webster’s Dictionary:
If you’re at a point where you feel like you need to coerce someone into doing something, it might be more civilized to just give up. To coerce is to manipulate, use aggressive arguments, pressure unfairly, or threaten — really, this isn’t very civilized behavior, is it? Handy synonyms for this verb
include force and pressure. In a gangster film, you might hear a character say he “put the squeeze” on someone — another way of saying he coerced them.

The hardest part of dying is the people. I think dying is like a parade. A wonderful parade of memories and people who dance and sing through your last days singing your song, honoring your life. Yes a wonderful parade.

What I’m stunned to find out is that there is a whole crew of people whose sole purpose is stop the parade and get you into a system that can kill the parade and steal the joy. They come in many categories

First is the Hospice system. When you join Hospice you no longer can see your primary care physician, you can no longer get your meds from your pharmacy, you can only get 15 meds at a time so you are always on the brink of running out, you can no longer go to ER. The meds are always generic and some have no coating so often fall apart in the mail. On the other hand you are sent the meds overnight by mail from a pharmacy somewhere out of state.

Everything in Hospice care says “you are in charge, you get to decide.” Lovely words, but sadly not true. The intense coercion to do it their way with the tiny little statement at the end that says, “of course it is your choice” with the hidden threat that you won’t get the meds you need in time. This of course is not true, but since Hospice is your ONLY line to meds, health care questions and pain management. There is a walking on eggs quality to giving any feedback about what you want.

Hospice has a protocol that they follow which really is designed to help those living around the dying person. I guess I would say that people in Hospice are focused on the care givers more than the person who is dying. In my first months with hospice my caregiver has received hundreds of these messages:
You are doing so well
What do you need?
You are a saint for doing this
We don’t want to burn the caregiver out
Are you getting out?
You are wonderful
Your notes are wonderful
If you need anything we are here for you
Now compare that with the messages I receive:
Your oxygen and blood pressure are good.
Oh, it’s going to get worse (Most frequent message)
When I say I received hundreds of cards from all over the world, it was discounted with this comment: Oh yes, everyone who is dying gets a lot of attention, isn’t that nice.
I am so discounted into the “just like everyone who is dying” that I no longer give any positive information for Hospice to step on.

Coercion to stay on a drug that I was having an extreme side effect to, got this response “Oh, that’s just the cancer, it will change and do different things, but it always gets worse.” Turns out that I was having a severe drug reaction that was in the category “See Your Doctor Immediately” if you are taking this drug and this happens. They way I found out was, in my drug infused state I Googled Drugs.com and found the side effects. When I presented them, the response from two hospice nurses was “I didn’t know about the side effects.” But the drug I reacted to was a hospice “go to” that for most people increased their comfort. I just fell out side the norm…

Concerning a med that I was taking independently without help. This was said to the caregiver: “Even through the hourly med is working well for her, let’s try upping the dose and doing it every four hours so make sure you don’t burn out.” (Tried and didn’t work – ended up with break out pain.)

When I was a consultant a friend gave me high praise when he said “I’ve never known a consultant like you, because you never forgot who the client is. In Hospice they have some pretty mixed signals about who the client is. First client is Medicare who is paying for all of this. Second client is caregivers. The dying person is not a client, they are the project. As a human being I have never felt so invisible. It seems like I’ve become a walking cancer project with one object: to drug into sweet oblivion .. so the living can feel that they have done something good.

In any type of dehumanization project the first thing you do is isolate the person so they are dependent on you, think brain washing. Part of the way hospice does this is to start to triangulate the relationship you have with your caregiver. One of my friends who is dying had her daughter turn her in to hospice for hoarding a little extra morphine in case she needed it. My friend who was dying was crushed by the loss of trust with her daughter.

Part of the dehumanization process is to discount the dying person’s own sense of their body. You really don’t know what is happening to your body anymore because it’s the cancer. So you really don’t know yourself.

And the final insidious message from hospice is “we know all about dying since we have seen so many people die, with the tiny little caveat that every one is different… we know about dying and you don’t.” The next part of the unspoken message is, “since we’ve seen so many people die we have a process for managing it that helps the living. So if you will just get on board it will be so much easier for everyone involved. But to get on board, you will have to give up your parade because we don’t know how to deal with happy people.” Well, here’s my message to all the living. You know shit about dying until you are dying.

The second crew of people whose purpose is to stop the parade I call the “Friends of Job”. If you remember the story of Job. He was on a heap of ashes and his three friends showed up to blame him for his condition. This is what I call the the “Job Syndrome”. When you are dying people show up and subtly and not so subtly work to blame you for your condition. By blaming you for your condition, they don’t have to look their own mortality in the face.

Job’s three friends, Eliphaz, Bildad and Zophar, all put the blame for Job’s suffering on Job. He must have done something wrong or God would not be punishing him. This is a very common refrain that is subtly sent as a message to the dying. If you did everything right, you wouldn’t be dying. You must have done something wrong or you wouldn’t be dying and in pain. The unspoken question is always: “What did you do to deserve this?”

Apparently people believe that if you haven’t done something to deserve a painful death… then you will surely die peacefully in your sleep. Well I’m here to give you the straight facts. 90% of all people who die will not die in their sleep, instead they will die a painful death. It is very rare to die in your sleep… death is a process, much like birth in reverse, death is active, messy and painful.

And of course the third category of joy killers is the story tellers. These are the people who show up to visit and want to tell you the story of dying that they know. It often begins like this: when my mother died, when my husband died, when my aunt died, when my grandpa died… etc. All the stories of dying are pulled out so they can tell you about their experience with death. I swear I’ve heard every version but the most chilling version came from a social worker who told me that she and her sister laughed at their mother’s bedside about how long she was taking to die. Her breathing would stop for 5 minutes and they’d think she was dead but then she’d start breathing again. They laughed and said something like “mother we are missing happy hour can you get on with it.” Well, I’m here to tell you that I don’t want to hear your story of dying. I want to look at the clouds, be grateful for what I’ve been given, laugh at my dog, remember all the wondrous things that have happened in my life and enjoy my parade. But in order to get my pain meds and the end of life support I need,
I have to play their game.

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