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Palliative Care and Hospice

11 years 2 months ago #20103 by momof4
Ginger,

Can you tell us about your experience with Hospice? Didn't you have a bad experience with your father? Maybe I am remembering wrong?
I know that the experience I had with my father was less than Angelic...I thought we shared our experiences on Webcafe' about our Hospice Horror stories?

Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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11 years 2 months ago #20098 by Gene Beane
Julie,
My dad was at ODESSY IN HOUSE HOSPICE FACILITY,,,ON FOOTHILLS DRIVE IN TUCSON, i CAN VOUCH FOR ITS CARE FACILITY.....GINGER

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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11 years 2 months ago #20091 by Julie
Karen, we live in a community that has several Hospice providers. So I feel like I need to figure out which one will be best for us. I am doing my research ahead of time. There is no immediate urgency.

I have a friend who just called Hospice in for her husband. She had seen a close friend through her last months and new the provider well and requested the same people for her family. Given that information I would expect they would be high on the list.

The hard part is the decision as to when to shift focus. Right now Dick is receiving treatment for his MDS. If that is successful he could then get chemo for the Bladder Cancer. A lot of ifs and no guarantees. And the primary decider will be Dick. I can gather the information but if he is able he will make the decisions.

I was impressed with the Hospice facility back in Madison. They had beautiful rooms with a view plus a chef who worked with the patient to provide the meals the patient wanted not institutional meals. They were a free standing non profit provider not affiliated with any hospital or nursing home so there focus was on the patient and family. I was not even aware of other models until I read the posts about How to Choose.

Julie

Volunteer Coordinator
ABLSC

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11 years 2 months ago - 11 years 2 months ago #20089 by momof4
Julie,

As with any other medical "treatment" or "option" research should be done, and if you know that your loved one will require this at some point. Don't wait for an "event: to force you into this. Get your information sooner rather than later.

Be sure to tell the Team what your personal and family needs are. If it is for pain relief, (which should be the main reason to choose this option) be sure that you agree on the amount of narcotics that are given. If your loved one never took high doses of narcotics, be sure they don't start them off on high doses. The amount of narcotics should not be drastically different than what they are currently taking if they are. Just increasing a narcotic to the next mg dosage is usually enough to get them out of pain as the pain gets worse. If they never took narcotics they should be started on the starting dosage of the drug, and increased as needed.

Remember that sedation is part of what hospice is known for, and there are risks with high doses of any drug.

Do your homework, and remember that the patient and the family are in charge. Not the hospice team. If it doesn't sound right to you, or if something makes you uncomfortable, go with your gut feeling. They work for you, that is very important to remember.

There are families that were very comforted by Hospice, They call them "Angels". Then there are horror stories too, and those that think they are the complete opposite. I think the main difference between the two is the family involvement. Make sure they are doing what you and your loved one want. Not pushing anything on you.

It is also possible to get a pain management team involved if the Hospice route is not of interest to you. That along with home health can make your loved one comfortable and pain free. Sedation is not comfort....Comfort is comfort.

I hate talking about this, but it is information that has to get out there.
Julie, my heart aches for people in our position, where decisions like this have to be made.

Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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11 years 2 months ago #20088 by Julie
Since we learned that Dick's Bladder Cancer had metastasized I have been thinking about Palliative Care and Hospice. We were told the Radiation treatment for Dick's lesion in his ribs was for Palliative reasons. There is Palliative care teams that are not associated with Hospice but the primary reason for Hospice Care is for Palliative care when a person is dying. I have found two blogs that focus on Palliative Care and Hospice Care. Most recently they posted about How to Choose a Hospice.

I thought some of you might be interested in what they have to say. I know I feel better informed about what questions to ask when the time comes to seek Hospice Care.

I found this blog first at here

That entry led me to the Hospice blog here

Volunteer Coordinator
ABLSC

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