What do I say. I have been asking for Palliative Care, but we have an HMO and all they gave him a month ago was a nurse for 30 minutes a week. If he stops all meds and cancer treatment I will demand HOSPICE, I can't bear to see him suffer anymore.
As of yesterday, He's not able to eat, dress himself or walk without assistance. 24/7 Oxygen. His heart rate has averaged 140-150 pulse since Friday night. He was given Chemo and Immunotherapy for Stg 4 Adeno Carcinoma which has made the heart condition worse.
The KAISER Oncologist said his cancer is treatable, but not curable?? WTH!
Any wisdom you can share I would be so grateful for. I have his AD and his will, but I've been up all night, it's 4AM trying to figure out what I should say or do now that he has refused to be hospitalized.
Is he a danger to himself now? I don't have any healthcare proxy or power of attorney. We have a living trust with our home and again his Will, but unless he has a heart attack or stroke, there is no DNR.
What words shall I say to him. I don't want to say the wrong thing. We've been together since I was 24, and I am 61.
And YES everyone I know I need to take care of 'me' this is why I am reaching out again. I am praying that I do the right thing for all concerned.
I'm devastated. He left the hospital against medical advice and refused care and they told me they were going to notify his Doctors last night.
Thanks everyone. I can't believe I found this forum. I have read and read so much of your shares. It's been a god send. Truly.
40 Answers
Helpful Newest
First Oldest
First
So then:
EITHER he will receive the best possible comfort care while exercising his right to refuse treatment for his cancer;
OR an improvement in the care he's receiving will help restore his motivation to resume treatment, in which case he can choose to discharge himself from hospice and return to active therapies. It can't possibly be the wrong move!
Treatable not curable = we can slow the progression of the disease, we can mitigate its effects, but we can't get rid of it.
First off, big (((((((((hugs))))))))). And deep breaths.
Read the above link. Adenocarcinoma is treatable, meaning that it is life-limiting but life can be extended a bit. It sounds like DH doesn't want that.
It sounds like he wants treatment to stop and to get on with things. Making him comfortable should be the goal now, treating symptoms and not the disease.
It sounds like he would be eligible for hospice. Have you asked his doctors if he is hospice eligible? That won't give you much at home help, but it will provide some assistance and access to a social worker, chaplain and those kinds of supports.
I think you need to make a list of his day to day needs, sit down with him and figure out who is going to do what. Do you work? So who is going to prepare lunch? Get him dressed?
Do you need to hire outside help? Does he need to go to an Assisted Living facility?
Start by calling his doctors today about Hospice. He certainly made his views clear by leaving the hospital last night.
ADVERTISEMENT
Your words mean so much, and incredibly echo what I've been through since 2011 with my DH. I so appreciate your time in writing this. Warmest thanks.
Have you and your husband spoken about the cancer, the stage, and what he would want the end of his life to look like. Please try to get support now from hospice personnel to put his wishes into writing, so that you can carry them out for him when he is not able.
Does he want palliative care with medications for comfort only, and in home hospice to administer pain medications? Do you believe he is ready to "go" or is he just over the treatment. If you haven't discussed any of these things in these last years of treatment it will be hard to face them down all at once, but Hospice can be very helpful.
Do you have friends or family for support in this heartbreaking time?
So many of us thinking of you now in this hard time for you both.
Call hospice to get him evaluated. He certainly has the right to refuse treatment.