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.
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.
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.
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
I know how difficult this is. My thoughts and prayers are with you.
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.