Dear Ferret,
The whole situation is so heartbreaking for you and for your husband.
I can only tell you that for my husband (AML) and I, we have spoken about end of life wishes way before leukemia struck him and we both agreed that neither one of us would want to see the other suffer indefinitely. We have directives in our Trust that should either one of us become incapacitated, on life support and in a vegetative state, it's time to pull the plug. For us, it's quality of life that's very important but our Trust does state, ".....after all reasonable measures have been utilized....". Our daughter and 2 friends would be included in a decision.
You'll make the right decision; take some long, slow breaths. When I'm overwhelmed, I take a very small amount of Ativan which helps me either function or sleep, or I go for a brisk walk (doing one today).
Robin
We had the vegetative state in our Living wills, but before you get to that point, there are decisions to be made. That's the part we didn't discusss. They are putting him on a steady Dilaudin (I forgot the spelling again) drip at 1 per hour and they can go up to 5 as he needs it. However, they say he's probably not going to be any more conscious than he is now. I did find out that the amount of care Hospice offers varies from one county to another. In our County Hospice will continue other medications and even fluid and feeding if wished, not just pain management. I want to continue some fluid and feeding, but maybe in a diminished capacity. I also want his heart medication continued since that actually makes him more comfortable. The T-Cell is affecting his heart, causing Atrial Fibrillation and racing. These are the little things that I wish I had his imput on. Right now though I can't even touch him without him being in pain.
We also never discussed in any detail what he wants after death, other than cremation. I just don't want to deal with that right now, but they are talking only a week or 2 now. This change came on so fast.
P.S. I wish everyone else a much better outcome with fewer peaks and valleys.
Farret,
I am so sorry for you and your family. Your husband has endured much pain and so have you. It is so sad to hear that someone has lost the fight to Cancer. When I read the entire string of everyone, I get so depressed. I keep telling myself that this will be me someday watching my husband loose the fight for his life. I wish things would have been different for you.
Kristen
Thinking of you Ferret and your husband! hugs, nicole