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My husband is in late stages of MS now, with swallowing becoming an issue. He aspirates which has landed him in the ICU on high flow nasal oxygen. Blood oxygen level cannot be maintained using normal oxygen tank. Dips down below 85. Lungs are a factor with dimished Doctors are still trying to wean him off of the high flow oxygen equipment. He's been there for 6 days. The doctors have not come right out to say anything about end of life, but I got the feeling they were skirting the issue. This morning, Palliative Care doc said this type of equipment is basically life support. If he cannot come off of this oxygen equipment, he would remain on it for the rest of his life. Of course, even though we should have had this conversation before, my husband and I (mainly me as he wouldn't have brought it up in a million years) have to talk about what he wants if this is moving toward end of life. So sad for us to deal with. He really doesn't want to be on life support, but to have it put in front of you takes the wind out of you. I have to be the calm one. I just don't know how to approach it. I've called the minister. Any suggestions on how to ease into this conversation? I'm sure I'll do okay, but thought I'd pick up some comforting ways to go through this with him--even after he accepts it.

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To my surprise, the social worker at the SNF where hospice took place for my father had a better approach than a doctor. She was very gentle, and asked specific questions about the choices my father would want. She didn't mention end of life, but couched the question more as "what if x happened, would you want y or z to take place?" Those are standard questions; we had good medical personnel who handled the questions gently, but one NP at the ER (precedent to SNF placement) was a real cold fish. I could have sworn she was Nurse Ratched incarnate.

Everyday, know that this kind of conversation is always sobering, unsettling and sad. My thoughts will be with you and your family as you face this challenging and emotional aspect of life.

It might help to think that he's reaching of point of ending his challenges and suffering from MS. As you watch him battle the breathing issues, you may find yourself reaching a point of wishing for it to all be over for him. Watching someone on high liter flow (11 liters, from my understanding) is difficult, and with a low SAT rate of 85, it will be even more difficult. (My father was on 11 liters in the hospital; doctors could only get it down to 6 liters, and even that was insufficient toward the end.)

I used to be able to calm myself by making plans, checklists, and refocusing on things I would need to do instead of the emotional issues. I also took gardening magazines to sneak a peak at when I needed emotional stability.
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When my mom began palliative care her nurse sat with her and went through a printed questionnaire, it was much easier to keep the conversation clinical and the nurse was able to answer any questions too.
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Enlist one of his nurses along with his physician to guide the conversation about DNR and living will. Nurses can help doctors explain things in a way that is both understandable and compassionate. You have my sympathy.
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I’m very sorry that you and your husband are at this point in your lives.

Read the book. “Being Mortal:Medication and what matters in the end” by Atul Gawande. It will give you guidance on important questions that might help you and your husband shift your focus.
Hugs to you both.
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You can gently approach him by asking a broad question what he is expecting to happen with this admission to see where his mindset is. Explain that the doctors are having difficulty bringing oxygen % low enough to get him home and they are not sure if they can do this because a high flow is not available for home and even many rehab places may not be able to provide it. Ask him again what he would like to do. It is the same approach that Garden Artist mentioned. Give him time to think about this, maybe wait a day and ask again.

Since palliative care is involved, you can ask what options are available to keep him comfortable
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great ideas at an online source for end-of-life preferences/discussions called the conversation project .org

has forms and practical, sensitive ideas for talking about things, with ideas for conversation starters.

this is what is helping me, more than anything else so far.

give us an update--it will help many!

theconversationproject.org
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It is imperative that your husband understands everything that's going on with him, so he can make "informed" decisions about his current situation. Be simple, honest, and to the point. Be patient, cry with him, and let your husband know, that no matter his choice, you will be there to keep him safe and comfortable. Strangely, many people are more concerned with isolation and suffering pain, than they are with the reality of death.
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We were in the same situation with my dad. Palliative care told us the same thing. Dad would be on life support for the rest of his life if he survived. We knew dad did not want to be on life support and it was in writing but we couldn't face the decision of turning off the machine. Palliative care talked to dad about his decisions and made sure that he still felt this way. This took a lot of stress off my mom. What helped my mom most was having her children around her to help her and support her. Consider telling your daughters. You need them and they'd want to know.
I know how difficult this is. My thoughts and prayers are with you.
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I agree with GA about the Social Worker. They always have a better bedside manner than the doctor.
Also, if your husband goes on hospice the doctors for those areas are usually much more sympathetic than a private physician. At least in my case, they were.

You could ask your hubby how he feels and what he thinks of his condition at the moment. Let him lead with the answer. I'm sure he understands how severe the situation is.

If he's against talking about it, you may just have to take one day at a time.

I'm so sorry for you and him.
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Thank you all for your thoughts and suggestions. By the way, I keep hoping he has months, maybe a year--I think I am in denial--like this can't be happening. He seems the same as he was a week ago...I also have to decide when to let our daughters know just how serious it is. My husband doesn't want to tell them yet. Again--thanks for your help and kind words.
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