topic Re: I think my hubby needs hospice, please help in Community Chat

I think my hubby needs hospice, please help

Ditzydori — Sat, 13 May 2017 04:52:55 GMT

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

Re: I think my hubby needs hospice, please help

DiAnne — Sat, 13 May 2017 04:46:27 GMT

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

Re: I think my hubby needs hospice, please help

granny me — Sat, 13 May 2017 04:53:05 GMT

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.

Re: I think my hubby needs hospice, please help

Plaid Pants2 — Sat, 13 May 2017 04:53:09 GMT

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}}}}}}

Re: I think my hubby needs hospice, please help

Ditzydori — Sat, 13 May 2017 04:55:29 GMT

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

Re: I think my hubby needs hospice, please help

Ditzydori — Sat, 13 May 2017 04:57:36 GMT

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

Re: I think my hubby needs hospice, please help

aubnwa01 — Sat, 13 May 2017 04:58:50 GMT

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?

Re: I think my hubby needs hospice, please help

granny me — Sat, 13 May 2017 05:07:59 GMT

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

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.

Re: I think my hubby needs hospice, please help

makena — Sat, 13 May 2017 05:07:26 GMT

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.

Re: I think my hubby needs hospice, please help

software — Sat, 13 May 2017 05:10:27 GMT

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

Re: I think my hubby needs hospice, please help

chihuahuamom — Sat, 13 May 2017 05:15:52 GMT

My husband was already in a dementia care facility when he went on Hospice so it was easier for us. His doctor started the process. As someone mentioned, there should be another doctor taking over your doctor's patients while he is gone, and he would be the one to begin the process. I was so thankful that my DH got Hospice. They are really wonderful and help so much with the cost of supplies and care. So sorry for what you are going through. I hope you will be able to get the help you need.

Re: I think my hubby needs hospice, please help

glickie — Sat, 13 May 2017 05:15:58 GMT

Have you contacted your husband's Dr. who treated him last and informed him of his decline. Once you have this conversation and express your wishes the Dr. would be able to write an order for Hospice evaluation and treatment. Is Hospice what your husband wants and are you his health care proxy? You could also do a google search for Hospice And then contact some of the agencies to get their take on how to proceed. My dad was on Hospice in Florida....Vitas and they were excellent. You could also contact VNA services and ask them for their opinion on how to proceed as well. Wishing your husband all the best!

Re: I think my hubby needs hospice, please help

Plaid Pants2 — Sat, 13 May 2017 05:17:56 GMT

Isn't there a hospital where you live that he can be taken to?

There they could give him an i.v. to keep him hydrated, and you could get the ball rolling in the hospice.

Re: I think my hubby needs hospice, please help

NYC Susan — Sat, 13 May 2017 05:24:26 GMT

@aubnwa01 wrote:
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?

From what I understand, her husband is not yet a patient. He hasn't been seen yet and they don't even have his records. He just has an appt scheduled at the end of May.

If he's doing so poorly, then he should be seen soon, IMO. She said she's 3 hours away from NYC, but certainly an ambulance would bring him to a local hospital.

Re: I think my hubby needs hospice, please help

Ditzydori — Sat, 13 May 2017 05:56:06 GMT

NYC SUSAN, hubby has been a patient of Sloan for 3 years. We went to Florida in December. And unfortunately, he declined there. We continued his care in Miami with a dr that knows the Sloan dr very well. I stayed there to have hubby finish the round of treatments. I wanted the records from Miami sent to Sloan.

My secret hope was that Sloan could save his life. Yes he could go to a local hospital, but that's not what he wants, nor do I and my children. What we are trying to figure out is what to do next with getting hospice and having Sloan Kettering intervene.

So I guess Monday morning I will once again call Sloan and tell them he needs to be seen asap, and go from there. Hubby is still eating soft things, like eggs, farina, applesauce and drinks glycerna. Not a lot, but something. I'm trying to keep him hydrated as well.

Hubby is very coherent. I'm still going to pray for a good outcome. There is always hope.

So so I now know I need the social worker at Sloan and the doctors recommendation. Thanks for the info. I am so thankful

But Im really heartbroken.

Re: I think my hubby needs hospice, please help

Kachina624 — Sat, 13 May 2017 05:54:18 GMT

It is the patients doctor, who is familiar with his medical condition, who makes the referral to hospice. There is of course the expectation that the patients condition is terminal. It's hard to imagine this man has been seen by a doctor and something wasn't done to address his condition. He certainlyly should be seen in some facility ER now on an emergency basis. He could be seen at the nearest ER, then transfered if necessary but do it now.

Re: I think my hubby needs hospice, please help

pitdakota — Sat, 13 May 2017 05:55:43 GMT

@Ditzydori

Hospice requires a doctor order. It doesn't have to be an oncologist or someone at Sloan. Does he have a primary care md closer to where you live? That is why they are telling your to go to an urgent care center, it takes a doctor's order.

You can call your local Hospice and see what they say. They might have advice of what you can do, ask you specific questions, so that they can give you some specific advice as to how to have a doctor evaluate him and give the order.

You might also want to talk to them about Hospice....for example you need to be thinking about what Hospice means. In Hospice, they will do everything to keep him comfortable, but in turn there will be no IVs, feeding tubes, or any type of treatment for the cancer. I only offer that because you are dealing with so much I don't want to assume you know this and that information takes you by surprise. Hospice is an incredible and valuable service, but it is an understanding that the end is near and no further treatment is to take place.

I am hoping there is a primary care provider your husband has seen that is in your area and that doc would be willing to sign the order for Hospice.

Big hugs to you. I know this has to be an absolutely horrible and challenging time for you. I am glad your children are there with you and your husband. I wil certainly keep all of you in my prayers.

Re: I think my hubby needs hospice, please help

Kachina624 — Sat, 13 May 2017 06:03:29 GMT

Surely you have a hospital closer than NYC! Call an ambulance and have him taken there ASAP. What is so difficult about that? Forget hospice and get him to the hospital. If he needs hospice he will be directed there later. Right now if he can't eat or drink, he need emergency medical care. Do it now. He won't have to sit in the waiting room.

Re: I think my hubby needs hospice, please help

Ditzydori — Sat, 13 May 2017 06:02:00 GMT

Pitadakota. THANK YOU. I didn't know that!!

Re: I think my hubby needs hospice, please help

Big Sister — Sat, 13 May 2017 08:12:13 GMT

When my DH was very ill, I believe his primary dr. called to set up hospice.

Hospice will send someone out to evaluate your DH.

Good luck and I am so sorry you are going through this.