Pallitive Care

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[email protected]

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Joined
Jan 21, 2020
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2
Reason
Loved one DX
Diagnosis
08/2019
Country
US
State
NC
City
Archdale
My husband has just been referred to Palliative care. He was Diagnosed with ALS Aug 2019. Can anyone share there experience with this. The ALS Clinic first recommended Hospice, but we have not made up our mode on a PEG yet and still looking for a clinical trial, hospice does not allow any one with a PEG or clinical trial, so starting with Palliative Care. Any info, such as benefit, and cost is helpful.
Wanda D
 

KarenNWendyn

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Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
It’s good if your husband is home bound because all the services come to him. I was on palliative care for a few months and they provided home services with an RN, PT, OT, bath aide, social worker, and SLP (if I wanted it). It is basically a home health service.

To be honest, I found the number of people coming to my house overwhelming and redundant with what I was already doing through my ALS clinic. I picked up a few good tips from the PT, but otherwise didn’t find it useful. However for some people I think it would be very useful and convenient.

Unlike hospice, you can still get new equipment and other services through your insurance while on palliative care. They did want me off the palliative care program when I went back to my outpatient ALS clinic.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
2,058
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Get Real
Wanda, if possible, I'd consider changing your Avatar signature without Email address.
And... maybe generalize your location like so many do here... even the Moderators.
This Forum is read around the world. Security. Like mine.

Mods?

Sorry about your husband. Glad you're here.
 
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