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kelly

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Oct 6, 2006
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661
Country
US
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ny
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saratoga springs
Well we met with hospice last week. Definitely lots of emotions gearing up to our initial meeting. We had tons of questions on what hospice would mean for our family. Our biggest concern is not feeling in control because Hospice takes over as a sort of case manager. We will still have our same GP, be able to go to the ALS center. They also approved for my hubby to attend his pool therapy two times a week. My hubby made it very clear with the nurse that he is not giving up and still plans on living. We were upset that hospice does not cover rilutek. We have some stockpiled. My hubby really wants to stay on this medication. Not sure how we are going to handle this situation. They will also cover the bi-pap machine cough assist machine, and we are borrowing the vibration vest. Oh, and they cover the formula for the tube feed. If a new miracle drug comes out tomorrow we could be discharged from hospice. They have a nurse on call 24 hours a day and can send an aide out a couple hours a week. They offer massage therapy, music therapy, riki, and other sorts of relaxation therapy. Hard to find any negatives except for the fact that we have to even be considering hospice at all. So, I will call them tomorrow to let them know if we are going to sign the dotted line. Good Night All!
 

pepsiman

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Joined
Feb 4, 2009
Messages
442
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Lost a loved one
Country
US
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NY
City
Latham
I'm glad to hear the meeting was a positive experience for you. The word conjures up so many emotions, but these people really are here to help. We didn't find them intrusive at all and the services they offered really were a comfort for Liz. In fact, if it weren't for the cold hearted bleep of a case manager/nurse it would have been a very positive experience all around for us. If I had it to do all over again I would have requested a change in the case manager/nurse early on as everyone else we dealt with was caring and helpful. I don't know anything of the organization you're dealing with but our biggest issue was that they didn't seem to communicate well with the ALS center. Fortunately, Dr. Miller was very adamant about everything and she didn't let anything slip, all we had to do was ask and she would push it through. I hope everything works out as well as possible and I am hoping for that miracle drug, not just for you but for all my friends here. Wishing you and Andrew all the best. Dick
 

mare

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Jun 5, 2008
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761
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Lost a loved one
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PA
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Lafayette Hill
Kelly-

I'm so sorry you are going thru this; that you have these decisions to make.
Sending you strength & prayers to carry you through.
 

CAHPAH

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Mar 1, 2010
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298
Country
US
State
MO
City
Barnhart
So sorry you have reached this step but I'm glad it went well. Serena's next clinic is in June and now that she is not working I know they will want to set us up with hospic as well. So we will be right behind you. They wanted to in April but said it wasn't do able as long as she was working. Just about everything I have heard as been positive. Best of wishes to you.
Jim
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
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2,981
Diagnosis
02/2008
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CA
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Alberta
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Hinton
Kelly, I am so sorry that Andrew is at the stage where he needs hospice involvement but am glad that the is able to get good care. Take care of yourselves and know that I am thinking of you both and of your boys.

Barry
 

brooksea

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Sep 27, 2006
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Other
Country
HM
Sounds like you hooked up with a great agency. Hope all goes well and he is able to enjoy his pool therapy.
 

Hataltul

New member
Joined
Jul 6, 2010
Messages
7
Reason
Loved one DX
Diagnosis
06/2010
Country
US
State
Oregon
City
Aloha
I am a manager for a hospice agency in Oregon. If you ever have any questions about hospice feel free to ask. The company I work for has hospices in 5 states. Not only do I work for an gency but my aunt and son-in-law's mom was on our service so I have experience from both sides.

I am sorry to hear that you have come to that, I know how difficult it is to talk about needing hospice. My prayers are with you.
 

Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,757
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
I don't think I really understand what Hospice is, what they do, and how they decide which medication will be covered. Is hospice is an option for a veteran?
 

Hataltul

New member
Joined
Jul 6, 2010
Messages
7
Reason
Loved one DX
Diagnosis
06/2010
Country
US
State
Oregon
City
Aloha
As for a veteran being on hospice, we have several veterans on our service. We have been paid by the veterans admin. and medicare for our patients.

Regarding the meds, it really depends on the needs of the patient. All medications related to the hospice diagnosis are usually covered under hospice. Medications not related such as high blood pressue meds etc, are not. The hospice can tell you which are covered and which are not. A good hospice always involves the family and caregivers in treatment. We have regular care conferences, about every 90-120 days, with the family/caregiver, any doctors involved and any specialists. This way we are all on the same page.

Hope this helps.

Deb
 
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