Hospice was wrong

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hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
City
Chamblee
About a week ago, hospice cut us off from their service.I tried to explain that my wife had gotten worse as far as swallowing, but that did not matter.By the weekend she was delirious and sll hospice could offer was a trip to the center. On Monday she went to the center and died on Wed. I was apologized to by a very nice hospice worker, who admitted they were wrong.They did not believe me. I had read this forum and knew that things could change fast and they did. As a caregiver, you know what is happening with your PALS do not be swayed my professional thought.
 
I am so sorry for all your pain. You were good and loving to you wife. Some people wait for that kind of love their whole life and never get it. Thank you for giving your wife the gift of your love. I will pray that your heart heals and that beautiful memories carry you through this terrible time. Sending you a hug, Kim
 
I am so sorry. It is hard enough to go through this, you should have been listened to. Keep the good memories close to your heart. I will keep you in my prayers.
 
I hear you hangingon. I will try with all my might to stand up for my pals and make them listen. I will not second guess myself thinking ..well their the professionals. They must know....I will trust myself...I will remember what you went through and I will pay attention. Thank you.
 
This is a very important thread. Most of the time cALS know more about ALS than any med professional. If your pALS is admitted to hospice you will have to be diligent in making sure they are taking care the way they should. You will need to meet with the doc in charge and it will be helpful to have a written explanation of needs and the reason for those. For example: No oxygen, just the BiPap and explanation with the phone # of the clinic neuro for their verification of your instructions.
 
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