Community Chat

[Ditzydori]

I have posted here recently about my hubby and the stage 4 melanoma. 

I believe he is a candidate for hospice but I don't know how to start that process. I'm crying as I type this.

If you recall, I posted that we would be returning north. We arrived. My hubby has been in bed and hardly eats. He is skin and bones. I called Sloan Kettering in NYC to tell them that he is having difficulty swallowing and is barely eating and is not well at all.

(We have an appt with them on May 24 but honestly I'm not sure he'll make it). So the nurse called me back and said the dr is in austrailia, and that I should take him to urgent care to be evaluated. 😳😳😳😳. 

I was shocked to be told this. First of all he's too weak to go and sit in the waiting room.  Secondly, he just had so many tests and a recent PET scan. Why do I need to go to urgent care???  To be told that the cancer is growing and starting to block his throat. Duh!!  

I wanted to to know what can be done to make him comfortable, to help him. He's suffering and it is unbearably painful. My children are here and together we are trying but honestly I think hospice is what he needs. 

So here's my question. If Sloan won't help, who will. Should I call Sloan back on Monday and tell them he doesn't need urgent care, but hospice.  Am I the one who decides that?  Or can I do it myself.  I am pretty upset by Sloan's lack of help. They're suppose to be a renowned cancer where people come from all over the world, which I believe they are.  so why weren't they more helpful. I asked if they ever got the records from Florida and they did not. I'm really tired.  

Whatever you suggest will be so be so greatly appreciated 

thanks,

Emily 

[DiAnne]

Call the hospital and speak to a social worker.  She should be able to tell you how to proceed.  

[granny me]

This is part of what my daughter does in her job. She said the hospital social worker can make contact with hospice on doctor's orders and hospice will then make all arrangements. So first step is having your doctor and hospital social worker talking. I would think there must be another doctor that is able to start this process. She said you have to speak up and push for what you want even if it means going directly to the hospital to speak with someone. 

[Plaid Pants2]

I think that you can call hospice directly, and they will answer all of your questions, and walk you through everything step by step. They may even be available 24 hours, I don't know.

If you feel that your husband needs medical attention now, call for an ambulance to take him to the hospital. Plus at the hospital, you can talk to hospice there.

{{{{{{Hugs}}}}}}

[Ditzydori]

Thanks. So I should up the appointment with Sloan. Then have them evaluate him. Is that what you would suggest?

[Ditzydori]

I'm 3 hours from NYC. An ambulance won't work. He has to be driven by car.

[aubnwa01]

When a dr. is on vacation, doesn't another dr. take the urgent calls that pertain to his roster of patients while he's gone?

[granny me]

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@Ditzydori wrote:
Thanks. So I should up the appointment with Sloan. Then have them evaluate him. Is that what you would suggest?

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She said you can contact hospice, but hospice still will have to speak to the doctor for orders.

 Daughter is a social worker at a hospital and this is a large part of her job, so I was texting her, but she must have went to bed. I was going to have her lay it out step by step.

[makena]

Went through this with my Dad.  He had a rare blood/bone disorder and had been sick and declining for close to five years until it got to the point we had round the clock care.  He ended up in the hospital because he would not eat or drink.  Not much they could do but put him on IV and such.  The hospital contacted hospice for us.  A gentleman came in and talked to us about what to do next and what to expect.  He was wonderful.  We ended up taking him home because it was his wish to stay in his home until the end.  Hospice would come everyday.  They had a special bed brought in to make him comfortable.  Either get in contact with Hospice yourself or at least get him to the hospital where they can make him as comfortable as possible and have them call in Hospice for you.  They really are what you need right now. 

I am so, so sorry.  My sympathies for what you and your family are going through.  I know you are tired and weary.  Just contact Hospice.

[software]

Emily, if your husband cannot eat or drink, he needs medical attention.    Take him to Sloan, take him to a local hospital right away.   This is what the nurse told you to do.    Then take the advice of others here, once he gets an evaluation, go forward with hospice or whatever advice the professionals recommend, with the assistance of a social worker.

I've been there & done that.   Leave this to the professionals.   Don't allow him to lie there and suffer.

I'm so sorry, I know this is so difficult.    Let your family help you too.

@Ditzydori