First, the update. Every question posted in the previous post is still on the table. They are moving him to a long term care facility. We will see if we can get him off the external ventilation during the day, or if this will be a way of life, and if, he is willing to live a life this way if he cannot get off the machinery.
He will most likely have a brand new baseline in life. Oxygen full time, and most likely, walking again, isn't going to happen.
Questions are being shot at me right and left about what can the church do for me. What calls need to be made to Habitat to accomodate our house ...what do we need to do.
The answer is simple. Nothing.
While we were really not prepared for this to happen in reality, in practicality, we honestly did know it was going to happen. There is no step leading to our house. There is a ramp from the driveway to our door. The doorways are an inch wider than most ..and the bathtub has a bar. This house was built with the idea that one day, the post polio would become an issue for Don, and we did not want to have to modify the house at that time.
The decisions to be made about machines, and life sustaining are simply a matter of what amount of healing, restoration can we gain for his body. How much recovery can he get. The choices he's made, have long since been made, discussed, talked about till we were blue in the face. I could recite them on ambien. In the middle of chaos, I know exactly what his choices are ...and this weekend, I knew on the worst day, when he was crashing, and it was clear that things could go sour very fast, what choices might have to be made. We'd talked so often, and so thoroughly, there simply is no questions of 'what does he want?'
Our faith, is so solid, we feel the presence of God, strong ..and solid .. in the middle of this horrible storm, we know beyond a shadow of a doubt, that He is there ...and that we are in the palm of His hand.
Quite frankly, I'm not ready for my husband to leave my presence, but, I know that he will not be hurting if he does go. I will be heartbroken, I will be more sad than I can even imagine being. But, my faith, is probably on more solid ground than it's ever been. I feel God's presence as much as I ever have.
I've watched the families in the ICU waiting rooms ... as they've not known what their loved one would want. They are try to make life and death decisions for someone who isn't awake, and they have no idea what that person feels about extended care, extensive machinery ... or quality of life issues. They have no peace, they have only confusion ...and they feel totally disconnected from their loved one.
Even when Don was at his worst, I knew that because we'd talked about it so often, we were in this together.
I beg of you, talk to your families and friends ... how do you feel about your care when the bleak comes. Talk about every imaginable situation. What kind of situation is ventilation ok in, when is it not. Is it ok for pneumonia? Is it ok to see if they can find improvement for a few days, then they need to turn it off if there is none? What are your wishes, talk about them ... talk about the details. And make sure that you're prepared for a new way of life if something happens.
Don't let the worst catch you in a state of confusion. It doesn't help things.
I feel like I've been pushed through a key hole and pulled out backwards this week and the one thing I don't feel, is confused. It's a matter of waiting to see how the circumstances unfold, and knowing we're in God's hands.
It's not fun. It's harder than I could ever have guessed. But we talked about it. You should too. You can't imagine the peace of mind it brings.