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.
I am sorry for your loss.. This just showed up today from what I see...
Prayers are with you... Take care.
The Dr saying his cancer is treatable but not curable means they can give him treatment to a point at which it will lengthen his life or put the cancer into remission but it will not go away, he will always have it and it will impact his life as it is doing, with a chance that at some point it will become untreatable and all that brings with it.
Hospice assistance is available in the home, he doesn't have to go into a specific facility as long as you and they can cope in the home with assistance available. If he is in agreement and you can get them to come and talk to you they are best equipped to give him the best standard of life available to him.
These are not decisions for you to have to struggle with alone - he needs to be open to you on his feelings. He is probably fighting to not cause you distress, but is succeeding in doing the opposite. He also may be struggling to accept his position and be one of those of us who don't want to consider paperwork as it feels like the beginning of the end - it is a pity we don't all do all necessary forms when we are fit and well, but we do tend to leave them and then they become somehow more final - hospice staff can help with helping him see what is good to put in place if he wants any wishes on his treatment taken into account.
Its hard to talk, and you have all my sympathies at such a difficult stage in your relationship, but for both your sakes you need to sit down and each say your piece and discuss.
Hugs and thoughts to you xx
I do not see a date on your post; I just logged on 01/13/2019. It is sometimes appropriate to refuse aggressive care, especially with a brief lifespan prediction. Doctors are trained to treat, regardless of a prognosis or age. My husband, 81, is a Palliative Care patient with PPO coverage. I know nothing about an HMO; however, a hospice will administer "comfort care" just as Palliative Care will. If you have not already, I encourage you to contact Home Hospice for a visit.
You are going through so much and it really influences clear thinking. Thank you for reaching out for others’ perspectives. It is a good step to helping yourself.
As for your husband - it seems like he has made the decision already.
How fo you have the conversation about “the next step”? Just ask him his preference, then just listen. Your hopes are probably not his desires at this point. Pain is a ruling factor and he may not express it any other way than to refuse further help. It is his life, and his decisions will affect you, but keep focused on what he wants at this time. That is probably as far forward thinking as he can manage at this time. If possible, talk with his doctor about your concerns. His doctor cannot share any of your husbands medical info with you, but he can help settle your unanswered questions of how you can help, etc. That doctor has the inside track and may be your next best resource.
Prayers
eloise
Ask your husband
What does he want his life to look like in spite of all the medical problems?
What kind of palliative care would he and you be comfortable with?
What kinds of care would his cancer treatment require and how would this impact his life: pain, loss of energy, loss of appetite...?
How does your husband want to live and die with dignity?
Tell your husband
What scares you about his current condition.
What you need to feel more comfortable with his life decisions.
Try to formulate a plan together that honors his wishes and alleviates your anxiety. Ultimately, your husband has the right to reject treatments that he sees are not according to his wishes. He needs to know that you want to know what his wishes are.
I'm glad you now have hospice because an in-home caregiver needs the moral support as well as the physical help with bathing, changing linens, etc. May your husband's passing be as easy and peaceful as possible, for both of you.
Hospice has had a huge part in my family’s life. My mom who had Parkinson’s was on and off hospice several times (she improved with their care). When she developed pneumonia and I knew she was coming to the end of her life, I requested hospice and the ER doctor who diagnosed her pneumonia was kind in quickly getting hospice ordered. My dad had prostate cancer that spread to his kidney and his hip bone (probably many other places too). We had been told that my dad would have a “speedy demise” which didn’t happen for him. He chose not to go through any cancer treatments or surgery and survived with hospice care for nearly 3 years. The comfort measures at the his life’s end were truly a blessing for him and for us as we sat with him.
I pray that you and your husband will have a great hospice team to come beside you and help you at the most difficult “life-test” the two of you will ever face.
Hospice takes over all medical care and provides supplies like wheelchairs and hospital beds. The hospice nurses we had were amazing.
If the patient decides to treat the main condition again, then hospice needs to be discontinued. It is fairly easy to jump back and forth if needed though. For example when a "miracle cure" fails.
Hospice provides care and comfort for the patient. For us it absolutely took strain off of the rest of the family so we could just concentrate on our loved ones instead of fighting doctors, appointments, and bills. We could talk about the good times rather than the hospital.
what to expect for our family when friends like you can give me a little
less pain knowing what I can expect. Thank you so much.
The only other alternative is the Baker Act if you feel he is a danger to himself, especially if he is confused. Actually if he has documented confusion the doctor should have Baker Acted him for medical and psychiatric evaluation. If both are clear and he is of sound mind, he has the right to refuse treatment and leave the hospital. You can call 911 and let that happen, but like I said if he is of sound mind and is cleared he can indeed refuse treatment and he has that right.
Just checking in to see how you are doing. We are here and care!!