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Pegi

Anyone have any new info for Palliative Care?

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I have been told that someone would come out to do a home evaluation before we decide to start this process. No they jump in the door want me to sign ppwk and cannot even tell me what DR signed the order. I have also been told I am not allowed to be a caregiver. Just trying to figure out what they call what I have been doing for months? And they went around our primary DR. I could use some help or advise from someone who has traveled this path.

 

Peg

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Pegi,

There are always bad apples. Are you referring to hospice care? Palliative is an extension of curative treatment techniques (radiation and sometimes chemotherapy) with the objective of reducing pain.  Hospice is making you comfortable (mostly in a home setting) when doctors can no longer arrest cancer.

Assuming you mean hospice because you mentioned a home evaluation, I have experience.  We (my wife and I) received two hospice provider recommendations.  We contacted both and had telephone consultations where they explained their services and approach to providing care.  We did not sign papers and there was no "sales pressure".  My oncology practice suggested providers but the firms we dealt with were mindful that we were only investigating hospice; we wanted to continue 4th line treatment.

If pressure is their technique, I'd be looking elsewhere. 

Stay the course.

Tom

 

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Yeah, that sounds pretty odd to me.  If I had to guess (legal background), the bit about your not being "allowed" to be the caregiver has to do with payment of insurance benefits.  IOW, you couldn't be paid by the insurance company (or whoever is paying for the care) for providing the care--it would have to be some third-party provider.  

Is there a patient navigator or anything like that at the hospital?  From what you've described, I sure wouldn't want to deal with that bunch that showed up.

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This firm was sent supposedly by the cancer center. They were contacted by the social worker that I had spoken to. Because of his weakness he is crawling upstairs to go to bed @ night. I did buy him a walker which has helped a great deal. It is like no one is listening. No we are not ready for hospice yet. We are looking for options to make his life @ home easier on him. He has been lucky as far as pain goes. Just the achy bones that go along with Nuelasta injections and the pain that has been going on for weeks with the rectal spasms for which we are seeing Dr this afternoon. Thank God most of the places we go have valet and wheelchairs available. I have already called my primary care Dr and will talk with him as he has some better references for me.

 

Peg

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Pegi,

I understand and know your husband appreciates all you do in caring for him.  So do we.

We don't have stairs in our home but my wife often had to carry me from bed to bathroom during my three days of nightmarish pain after each of my 18 chemo infusions.  So I know what you are going through.

Then you have to encounter someone pushing papers and agreements in your face on top of your already difficult burden.  I truly despise people and organizations who try to profit from cancer survivors and caregivers misfortune.  But sadly, it happens.  Misfortune be it a tornado or a lung cancer diagnosis always brings out the scam artists.  Good that you are consulting with your primary and hope better alternatives result.

Stay the course.

Tom 

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Hi Pegi, I just saw your post of July 27 and I wonder whether what your husband needs is physical and occupational therapy in addition to palliative care. If you haven't worked with PTs and OTs before, you might be surprised how many things they can help with: finding ways for a person to get around more easily and safely in their home, getting mobility and adaptive equipment to make things easier, teaching caregivers how best to assist someone without hurting themselves, etc. Is your husband on Medicare? I think Medicare will pay for this. You may need to shop around some. When my mother broke her hip, the PT who came out was helpful and really good but the OT was not so great. I did get from the OT an equipment catalog so I could look through it to see what might be helpful.

Just an idea I had. I wish you all the best. 

Bridget

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Hi!

Please post an update when you can.  I've been thinking about you.  It sounds very much like you were pushed into hospice care as opposed to palliative care.  Palliative Care is supportive care and they work wtih your primary care physicians.  Let us know how you are doing.

Best Hopes-

Katieb

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4 hours ago, KatieB said:

Hi!

Please post an update when you can.  I've been thinking about you.  It sounds very much like you were pushed into hospice care as opposed to palliative care.  Palliative Care is supportive care and they work wtih your primary care physicians.  Let us know how you are doing.

Best Hopes-

Katieb

Katie, I did not get pushed into it. I refused to sign ppwk and they left. I am still looking into palliative care. Something needs to be done soon. I will keep you posted on what I find.

 

Peg

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