[Paddysmom]

I went to the hospital this afternoon.
Walked into Tud's room, touched his hand, spoke softly to him (no response) then walked out.

The nurse (another angel) received my questions and answered them directly.

I shook my head and said I'd never seen so many machines attached to a human being before. She invited me back into the room to explain all of them.

This one is his nutrition.
This one is his blood pressure medicine.
This one is his heart medicine.
This one is his sedation.
This one is to remove gastric (stuff).

I forget now what the other 3 bags were. The light bulb is beginning to come on over my head.

Then we moved on to the monitors. Heart rate, blood pressure, respiratory function, ventilator.

Well, I say, that all looks pretty good.
Yes, we've got him stabilized at what would be normal ranges for him.

And all of the functions are assisted by machines. We leave the room.

I asked: "How long? Six days? Six weeks? Six months? Before he can be taken off all those things?"
She replied: "The benchmark (not her word) is 14 days."

Then they start taking some things off and replacing them with other things.

OH GOD! I asked the question: "Is this... is this full life support?!?"
Yes, she said. This is life support.
Not just assistance? Full life support?!?
Yes.

I didn't know. I thought there would be a huge banner or something in the room saying "PATIENT ON LIFE SUPPORT" or something like that. Tudor would be FURIOUS to know he is on life support. (Somewhere in our archives I have his directive but I can't find it at the moment.)

Nobody told me. I didn't know. I didn't think life support would appear to be so... sneaky. I thought he was just being... helped.

I have to make the decision and I have already done so. I guess Tud and I made it years and years ago, actually. The question to myself is "when"? He would say "now!" My answer? No later than a week from Sunday. Easter.

I am probably a horribly callous woman and evil for posting this here but just writing about this to my friends is helping me. I think.

I'm in shock, disbelief (a little), denial (a little), and overwhelmingly sad for this man I have loved so deeply and dearly.

WHAT WERE HIS DEMONS THAT DROVE HIM TO DO THIS TO HIMSELF!

 

[zoesmom]

Oh Nance
Huge (((HUGS)))

I am so sorry, and am typing in tears.

You are not callous or evil. It's good to get your thoughts out. Theraputic.

a bit off topic: I, among many, have a health care directive, and I truly hope my decision is honored.

Keeping you and Tudor in my thoughts and prayers.

 

[Delmonico]

Nance, I know this is not a real good answer, but everything and nothing. If I had the answer I'd win a Nobel prize.

I've lost both friends and relatives that way, not surpising if you knew my past. Just whatever happens, do not blame yourself.

I'd give you a big hug if you were closer.

 

[Anne]

Oh, sweetheart. Words fail me. What can I do to help? What can we do??? I am keeping both of you so very close in my thoughts and prayers right now.

 

[nellies mom]

Nance, I do not know what to say. I am so sorry. I have a living will; only external heart massage. Nada else. HUGS again. Do you have anyone close by for support and to talk to? If you would like my phone number let me know. Again hugs and kisses to you.

 

[patm]

We are with you, here on JL, supporting you as much as we can in this humble way. I could tell that you were in shock with your first posts, now, it's starting to sink in. I think the thing to do is to talk with the doctors about what they think his chances are of "coming off life support" . While most people don't want to be "kept alive on machines", somtimes they are just a bridge to help get people through something, and they can get better. The doctors will have the best idea of this. This is so awful - we're all here for you - keep posting as you feel up to it. Love and Hugs and Prayers

 

[lcspt]

Nance, I am so sorry. My prayers are with you and Tudor. May God guide you gently and hold you close.

 

[boonesmom]

I am so very sorry--I really can't find words to express how sad I am at this moment. I wish that you were not having to go thru this--Please let us know what we can do. I know that sounds silly cuz we are just a bunch of people on a Lab Forum but I just want you to know that if there is anything, anything--reach out.

You are not an evil or callous person. It helps to get the words out and we are here for you.

Sending the biggest {{{{HUGS}}}} possible.

 

[amazongold]

Oh Nance, my heart breaks for you. I am in tears. (((((Nance))))) How I wish I could be there to help you through this.

No matter how well thought-out your plans are, no matter what mind you were in when they were made, it is still hard to carry them out when the time comes, especially when you have not had the chance to say goodbye. Talk to Tudor, even if you think he can't hear you. Tell him how you feel, tell him your anger and your angst, then forgive him and say goodbye. He will hear you, Nance. Will his son come?

I would advise not doing it on Easter, or you will always equate the holiday with this. Perhaps Good Friday would be fitting. Or, Tudor may take the decision out of your hands, once you tell him goodbye.

 

[Golfgirlrobin]

I'm terribly sorry this is happening to you but I just wanted to say that you really need to sit down with an actual doctor and be sure there is no hope for recovery. Full life support is very common and many people come off of it and survive just fine.

I just don't want you to end up in a position later where you wonder if you had all the facts.

God bless you and your family.

 

[ohenry]

You are not callous nor evil. You are human and lovingly humane.

 

[Paddysmom]

I'm terribly sorry this is happening to you but I just wanted to say that you really need to sit down with an actual doctor and be sure there is no hope for recovery. Full life support is very common and many people come off of it and survive just fine.

I just don't want you to end up in a position later where you wonder if you had all the facts.

God bless you and your family.

I have met with one of his attendings. We are meeting again in the morning. It is laughable what they will reveal to anyone anymore. "Your husband is stable". "Yes, but for how long and what about with no assistance?!?'' "He is stable for now." Very helpful, isn't it, Robin.

 

[Jan]

I'm terribly sorry this is happening to you but I just wanted to say that you really need to sit down with an actual doctor and be sure there is no hope for recovery. Full life support is very common and many people come off of it and survive just fine.

I just don't want you to end up in a position later where you wonder if you had all the facts.

Agree. Have they actually said there's no brain activity? Maybe he can still recover?

So very sorry you're going through this -

 

[Champsmom]

We are with you, here on JL, supporting you as much as we can in this humble way. I could tell that you were in shock with your first posts, now, it's starting to sink in. I think the thing to do is to talk with the doctors about what they think his chances are of "coming off life support" . While most people don't want to be "kept alive on machines", somtimes they are just a bridge to help get people through something, and they can get better. The doctors will have the best idea of this. This is so awful - we're all here for you - keep posting as you feel up to it. Love and Hugs and Prayers

Yes, this!!! You need to speak to his doctors to see what his chances are of coming off life support before you make any decisions.
My bil was on life support. He was addicted terribly to narcotics. His whole body was shutting down. He was assisted by machines, and he did pull through. He is fine today, and it's a constant battle for him fighting those demons, but so far he's doing it! I wouldn't give up hope just yet.
Please speak to his doctors.

 

[Jefferson'n'Ted]

Ah, Nance. I am so sorry that you are going through this. Do you have anyone that can come and sit with you at the hospital? Even if you don't think that you want someone, it helps. Believe me, I've been there. Two years ago the doctors told me that they were putting a DNR on my husbands chart, and removing all the tubes and assistance. Different reason put him there, but the heartache is the same.
As others have said, the doctor will tell you when it is time to take him off life support.
Please feel free to pm me if you want to talk, cry, or just vent.

 

[labby]

Oh Nance. There are no word except you are in my prayers.

 

[kaytris]

Is there a patient advocate/liason/support system at the hospital? Agree that you need to insist on a meeting to discuss specifics and details and all..

best wishes and good thoughts for you both

 

[Henry'sMom]

I'm a long-time lurker in Lab Chat and here, and just wanted to say how sorry I was to read about Tudor. My son was on life support for two weeks last December and is now home with me, mentally fine, with lots of physical challenges he is working to overcome.

One thing I learned to do in the Critical ICU was to almost stalk the doctors and insist on getting my questions answered. It is hard to do, but they WILL talk with you if they see that you will not give up.

I hope for only the best for you and your husband.

 

[Dawn and Bear]

(((Nance))) You are in my prayers.

 

[Tucker]

While I have been on JL for a couple of years, I tend to read more than post and often my posts aren't lab related because sometimes for whatever reason it is comforting to post in a place where while you know people, you really don't KNOW people...I am sorry for what you are going through...I don't really have any advice or words of wisdom, just know that people that you don't know are thinking about you in this difficult time.