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Use the online portal, where you're viewing the chart, to find the email link to explain the situation and ask your questions.

You are not violating HIPAA if you are participating in his healthcare--the guidelines are here:

https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/consumers/consumer_ffg.pdf

Good luck.
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Before an appointment with my parents I would post on their patient portal any updates the doctor needed to be aware of. This was a good place for questions also.
You need to be prepared for care your husband may need.
Ask if you can make a private appointment just for yourself to review the present condition. Sounds like he should not be driving at all.
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Tryingmybest, I am so sorry that your husband isn't doing well. It's a rollercoaster ride with or without treatment.

At least the portal is helping you to understand what is really going on.

One thing we did with my sister was to contact and plan surprise visits from long lost friends. It was truly a spirit lifter and blessing for her. Maybe you can plan some visits with people your husband laughed with, it would be good for you too.

I know this is not easy, be sure and find ways to care for you. Your life is and will be hugely impacted, it is important to kinda plan how you are going to move forward. I know that's hard to contemplate but, having a plan in place for support for yourself will help you get through this.

Great big warm hug!
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Ask your Dr to request a hospice evaluation – or apply direct for one. If DH is accepted for hospice, he doesn’t have to accept hospice treatment. But it gives a separate view on what is going on (and will go on in the future) that you will have access to. You should be able to talk to the assessors separately. Make sure that DH knows it isn’t compulsory to go through with hospice, but tell him that you need to go through the motions of an assessment for the medical system’s rules. It could be a big help.
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Another update:
I sent a message directly to his doctor about where this journey will take us. Their reply was they couldn’t give me a prognosis. Every patient is different and they couldn’t see how long he will last. But I learned last week that they intend to keep doing the chemo cycles until he can’t take it anymore. He didn’t argue with them. He’s got to follow doctors orders. He has started seeing a therapist during treatment (per my request). She is trying to get him to understand how ill he is, but he doesn’t want to hear it. We had a meeting with his doctor also, she actually told him he was a very sick man. So he says he wants physical therapy! When we got home he was angry that she told him that. How does he not know? He is in complete denial.
His treatment is palliative, but he doesn’t want to accept that. When he was diagnosed in October, the doctor said hospice was an option. But he has a definite opinion of hospice and thinks it means an early death. That hospice means giving up. Here we are nearly three months later and he wants physical therapy. His denial is heartbreaking.
I still don’t know how long he will last. I’m hoping the physical therapy people will help him understand. He’s very weak and shaky. Has fallen a couple times, which I believe is some type of brain seizure. They are doing another brain mri in a couple weeks. The stress is unbelievable. I’m going to stay in the background and follow his lead. I’m not going to be the one to take away his hope! It’s the least I can do for him.
I find it interesting in other countries they wouldn’t give him anything but hospice. Cancer is big business in the USA.
I pray that he comes to some sort of peace with this.
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Isthisrealyreal Jan 2023
tmb, I am so sorry for your situation.

It is good you are going to follow his lead. Miracles do happen and there are people that beat cancer.

If you have a faith community, start a prayer chain, get the elders to lay hands on your husband and pray.

Get them to hold you up in prayer, it truly helps.

May The Lord God Almighty grant your husband healing and give you both strength, peace and wisdom for this journey, whatever it holds.
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