I think my hubby needs hospice, please help - Page 10

KathyPet · ‎03-09-2010

WHen my DH was at UVA Medical Center diagnosed with melanoma on his central brain stem one of the attending neurologists spoke to me about palliative care. I had never heard of it but he explained what it is and made a referral to that dept for my husband. HAving palliative care come in was positively life changing for me. My palliative care nurse was spectacular. SHe acted as my interpreter with all the various specialists that became involved with my husband's care during the almost 100 days he spent in the hospital. SHe would come in and sit and talk with me, listen to my concerns, help me sort out the different options for his care. She never pushed me one way or the other but gave me the options and the positives and negatives of each choice. THe day he died the attending physician told me that time was short and that he did not think my DH would last through the day. I called my daughter to come and then I called Meg (my palliative care nurse). SHe came immediately and the two of us talked with the doctor. SHe made suggestions about what things could be disconnected (like his feeding tube) and putting him on a higher morphine drip so he was not in any distress. she told me what to look for and expect as the day progressed. SHe stayed by my side until my daughter arrived some three hours later and then called twice after that to check on him and me. SHe was my advocate and my support during this difficult time and I am eternally grateful that she was there.

wismiss · ‎03-10-2010

I just lost my wonderful brother to cancer and so we went through this, although he came home (his home) after a hospital stay. I was his health care advocate. Maybe you know some of what I am going to share, so please forgive me if I say something you already know.

Medicare will pay for hospice. Your family doctor can also order a hospice evaluation, after reviewing what the oncologist has in the records. The evaluation by hospice will determine what they can provide for your husband. My brother's family doctor also was the one that ordered the medications, based on the Hospice evaluation, so you do not have to wait for the oncologist to return from being out of the country. Medicare, through Hospice, will also pay for almost all the supplies (and medications) that your husband needs to provide "comfort care" for him. In addition, hospice will provide a CNA to come to the house two or three times a week to give the patient a sponge bath if he isn't able to get in and out of a tub/shower.

If you choose to have 24/7 caregivers, that is private pay and is not covered bty Medicare. So, my sister from California and I stayed with him almost six weeks before he passed.

My suggestion is to start with your family doctor and go from there.

((((((((((HUGS)))))))) to you and your husband.

“I can do things you cannot, you can do things I cannot; together we can do great things.” St.Teresa of Calcutta

esmerelda · ‎03-10-2010

@KathyPetHospice and palliative care nurses such as yours are angels on earth.

*********************
Keepin' it real.

Marienkaefer2 · ‎03-09-2010

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

THIS! ^^^^

If you have a garden and a library, you have everything you need.--Marcus Tullius Cicero

Marienkaefer2 · ‎03-09-2010

@esmerelda wrote:
@KathyPetHospice and palliative care nurses such as yours are angels on earth.

@esmerelda

Absolutely!!! I truly believe this. When you've seen them in action, you know it's true.

If you have a garden and a library, you have everything you need.--Marcus Tullius Cicero

pitdakota · ‎03-16-2010

@Ditzydori wrote:
KATHYPET, boy you do have a lot of questions. I'm sorry I wasn't clear. I'll try to spell it out to you.
3 years ago my husband was diagnosed with melanoma. We lived in NY and Sloan Kettering is a renowned cancer center where people go from all over to be helped. He has been going there for all of the 3 years. So last year we moved to Pennsylvania but continued to go to NYC. Not an easy feat but we thought it was worth it because SK has a fantastic reputation.

So so fast forward to November of 2016. Hubby received 5 rounds of radiation to his lung (melanoma metastasis). He got the ok to go to Florida (were snowbirds), so December we went to Florida. Hubby was ok. SK Dr gave us the info of a dr in Miami that would continue his care. Around February, hubby got this debilitating fatigue, and bump in his neck (original melanoma was on his jaw bone, a beauty mark he had all his life that turned). The melanoma came back for the 4th time. He had radiation and the immunotherapy was changed. The Miami dr was IMO just as good as SK.

So we waited for the round of treatments to be completed and for hubby to be scanned. Results weren't good. The cancer continues to spread.

I DID MAKE AN APPOINTMENT WITH SK FOR THE 24th of May. But I wanted the records from Miami to be sent to SK. I have the disc and the report from the PET scan but I just wanted the rest forwarded to SK.

When i I arrived back north last Wednesday I immediately called the SK dr to let them know hubby wasn't doing too well. Hubby has been eating soft food for a while now and has been vomiting from time to time also while we were in florida. I told the Miami doctor this. His response was it will get better before it gets worse. He gave him anti nausea meds, and said the immunotherapy should work that it could take time.

When his siblings saw him when we arrived back north they said he maybe needs in home care, and I agree, he needs something. The palliative care that was mentioned on here seems like,a good,fit now.

I called the pallitive care in my area and they are going to call tomorrow to set up an evaluation. Hubby needs help, but I like,the idea of the pallitive care because it allows the patient to continue to receive treatments.

I am so,thankful to,the ladies who told me about it. I had no idea and that is why I cameos here to get more info. And I did receive that. Thanks to the nurses who replied.

when hubby heard SK wanted him to go to urgent care, he immediately said he didn't want to go.

His is best friend came over today and sat with him. We had a good,day. My children were here and my hubby looked at peace today. It was a good day.

I will,pursue the pallitive care. I will not rush him to urgent care or the emergency room at this time. He's been to hell and back,with this horrible disease. He's resting peacefully now. I have. ALOT of support now,that I'm back north. Hubby ate his,usual soft food today and kept it down. I'm grateful for that. One day at a time.

Tomorrow starts a new new day and I will continue to be by his side and do everything I can do to take,care of him.

His is best friend or my son will drive us to SK on the 24th. In the meantime, I will pursue the pallitive care route and see what they recommend.

It's all in Gods hands.

thanks so much for telling me about the pallitive care, because without you ladies I would not have know. You are all Gems!!! ❤️❤️❤️

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@Ditzydori, I am glad to know you have called a palliative care team in to evaluate your husband. I somewhat suspected that might be a better option for you all rather than going the route of Hospice, given what you posted the other night. There is no right or wrong decision, everyone needs to make the decision based on their own situation, goals, and expectations. And above all, it is a decision that only your husband and you can make. But good to know that someone is coming in that can hopefully be helpful.

I send good wishes and prayers to you, your husband, and your children as you navigate this difficult and challenging journey.