Tuesday, February 08, 2011

Day 4 dialysis

Whew. I truly wonder if I will suvive this. I'm researching like crazy, trying to absorb as much as I can. Planning to see if the hospital has any education on dialysis they can offer me. I need help!

Yesterday, after his 4th dialysis in 4 days, I realized that all of his hallucinations are most likely from the toxins being replaced in his brain's blood supply. He said I was wearing a plastic bag over my head and that there were plastic bags floating in the sky. Then he said there was glitter on the ceiling and that it was blue (not white accousitcal tiles!)

Just before that, he was completely beside himself saying that he just wanted to die. He didn't want to continue dialysis. He just wanted to die. He wanted to pull everything out of him. He was crying. I tried my best to be his cheerleader. Telling him that he had 3 little grandchildren that needed their grandpa. Telling him that if he died, it would surely kill his mother, so he had to stay alive so I didn't have to tell her anything. I pulled out all the stops and he finally settled down. But I was so drained, I just thought I might die myself.

I know that I also have to ask for therapy to come in today for him. Not sure he will understand or comprehend anything, but I have to ask.

On the upside, he is out of ICU and into a private room. Still under infectious control. No status on the c.diff yet. I think he has to be on iv flagyl for 4 days...but need to ask that question again today. Just way too much going on for me to remember all of it.

They were talking yesterday about putting a permanent port in for dialysis. I need to have it written in his orders that we need to discuss this first, since he has always said that he would not do dialysis.....and since he wants to stop and die after each treatment.

I have to tell you that it simply breaks my heart. The most devasting thing on earth is to have the person you love, holding your hand, saying that he wants to die. And saying it over and over in such a terrible terrific moaning voice. He truly just wanted to die.

Once we got him into his room last night, he started telling me to leave. He wanted me to take everything and move out of the house and leave while I could. Of course, I made "light" of it and told him that I hadn't found the right "box under a bridge" so I had to stay put. :o)

He has absolutely no idea what I have been through the last 8 days. I know my readers know. But he doesn't. The utter heartbreak. Crying streaming tears in sheer agony to God to give me strength to make it through just one more hour of the literal smell of death coming up through his body. Knowing that having worked in the medical field in the past, I am fully aware of what that smell is.

I thought I knew what the roller coaster ride was. But this is so much more than I have ever experienced with him. One moment, bracing for death, the next, celebrating such a tiny victory as him squeezing my fingers. Going from him being blind to having his vision back. Listening to him moaning that he just wants to die - to talking about where we are going on our next vacation. It seems to go from the lowest low to a rather positive high, just to sink so eternally low once again. It is aging me. Being a constant cheerleader is aging me. I have had my moments when I had to flee his room and find a quiet place to cry my tears of heartache and dispair.....wipe my eyes and go back in with my "happy face" shining bright. I just have to be a rock in front of him. But this rock has it's moments when it shatters to nothing but grains of sand and then has to rebuild into another rock. It's so hard.

I'm making adjustments. I'm crying at night when I'm home alone in our bedroom. The process of crying seems to wear me out and allow me to sleep so soundly. So that's good. Today, I need to get all my notes into one place, get them in order, edit them, review them. I've asked my sister (bless her soul, she has been with me 24/7 since this started) to start taking notes as well. Just because I find I'm getting confused as to what day he did/said what.

Yesterday he walked 8 steps and then started to lose his vision. No one knows why. Before that, when he sat up in a chair, he started to go blind again. Of course, he panics. I would, too! But when he panics, his heart rate shoots up and everything just goes out of kelter. His BP is not dropping, so no one know what's going on with his vision.

Thank you for all of your comments. While I'm not reposting them and making my comments back, just know that your support means the world to me. I know that each of my readers either has experienced what we are going through, or knows that they may one day soon go through this journey. There is absolutely no way to prepare for this. If you know the steps in the grief process, I do think that eliminates fome of the surprise of feelings that happen. When I get mad at a nurse....I can stop and ask myself if it's just the "anger" phase, or did the nurse really do something that justified my anger. Things like that help. I've been able to understand shock so much better - I just want to walk away from everything. And it seems that every single day, I am at different levels of the grief process on different issues. And just being able to pinpoint where I am truly helps. So if you haven't been to a grief training class - find one.

The other thing I have realized this week is that you cannot counsel others when you give them bad news. When I'm in the "anger" phase....that's just not a good time for me to inform anyone else that he's on dialysis. Because they are going to be in denial. And if they deny his condition when I'm angry about it.....well you can just imagine!

So I have picked one person from each "group" as my contact. My sister for my family. His brother for his family. One guy from his office. One artist from my pals. Those 4 people get a phone call or an email (usually email) from me each day. I have asked everyone else in each group to contact that person for updates. I had taken over 100 phone calls from friends and family wanting updates on him. This system has truly helped. And while his parents are livid that they have to go to his brother for updates, it has eliminated me having to listen to them cry and carry on - something I just could not do right now. My husband will have to come to understand that later on. I also realize that this "system" is going to need to be solidified in the near future as even talking to 4 people on a daily basis can be quite draining. And my sister can't stay with me forever. She needs to go home and take care of her husband. But for the moment, this has helped me immensely.

Time to get up and get dressed and get to the hospital. Posting my thoughts here truly helps!



Lynn Barry said...

What an incredible way to deal with a horrific situation to be going through...write it all down and let it go...no it doesn't change the fact that you are and have to go through it but it unburdens you from holding on to it and adding it to the already overloaded shoulders you are carrying.
Braveheart...that is the word that springs to mind when I read your blog...hugs love thoughts and continued prayers.

Anonymous said...

DW - I do not have the words to express my admiration for you and my concern for your husband and all of the other issues flying through my head as I read your detailed "notes" It is really smart of you to divide out your contacts into a notification tree, and fabulous that your sister can be there for you. all my best, Tom's Wife

Lilly said...

So sorry you are going through so much! You are very smart to have designated 4 people as contacts. I have had to do that in the past during my hubby's several hospitalizations, as he has a very big extended family, and everyone gets upset if they don't personally know what's going on. It gets very draining very fast, as you well know! Hang in there . . . hoping and praying for the very best for both of you.