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On Monday, February 29, 2016 at 11:30 PM, T2Logan said:

Hello everyone. 

I've been reading posts upon posts the past week and you all seem very caring, supportive, and understanding of one another through some of the most difficult times. I'm not sure how short or long this will be and if it's a little scattered, I do apologize. I can't seem to keep thoughts in one place too long...sometimes they don't even make sense. 

 

I'll try to make a long story short. 3 years ago my mother almost died due to liver issues. At the time I believe it was severe acute hepatitis at the time due to alcohol. Luckily she recovered and was told she could not take another drink. Unfortunately, addiction won and here we are 3 years later and she now has end stage liver disease, stage 4 cirrhosis. She was sent to the ER last week and admitted to the hospital, then transferred to another hospital that specialized in livers. It was then she was officially diagnosed with cirrhosis plus acute alcoholic liver disease and acute alcoholic hepatitis. She is having all the complications associated with this disease (jaundice, acsides that they can't drain, esophageal varices that may burst at any moment and bleed out within minutes, and hepatic encephalopathy due to the ammonia build up). Her lab numbers were just bouncing around and not having the appropriate trend up or down (as needed) and were all really out of the proper ranges. The ammonia came down slightly but she's still confused. She is not eligible for a transplant and even in the hospital was denying she still drank, despite lab tests and her discharge papers stating her labs indicated recent alcohol consumption. She was placed on a blind clinical trial because, well, why not I guess...it can't hurt, right? She could receive one of 2 levels of the new drug or a placebo and we won't know which. The doctors at the hospital were not very forthcoming. I believe they were trying to provide hope by being vague, but I am one that *NEEDS* reality so I can mentally prepare and plan. Hope is nice, but I still need a reality check of what we're dealing with! I couldn't stay and had to return to work, but my father stated half of her medical team said she has a chance of making 3 months, the other half of her team didn't think so. It is very much up in the air right now and I am completely in limbo. She goes to her local doctor tomorrow and back to the other hospital Friday for a follow up. I think we'll know more as to whether  she's improving, maintaining, or declining. 

I don't know how much I want to share, but due to various reasons she has decided to not see me or speak to me for over 2 years. I drove to the hospital to be there for her this past weekend and hoped to see her and to say goodbye if it was at that point, but she refused to see  me. Let's say it was a huge slap in the face and opened old wounds I'm having to put back together on top of this situation itself. I was there to help my father more so I guess. I don't want him dealing with this alone. Anyway, I didn't realize how hard I'd be hit with so many confusing emotions. i'm not one to deal with emotions well (if at all) and I can't seem to stuff them away like normal. Oh, I should've mentioned I'm 28, if that makes a difference, and my father is a much older father so I'm worried about his health currently and when she passes. I live hours away and I'm the closest one in the family on both sides.

So I'm dealing with 1) rejection and that anger, sadness, and depression, 2) an alcoholic parent, that history, and anger she did this to herself (though logically i DO understand addiction so there is empathy in there as well), 3) she's still my mother and deep down I DO love her and would like to say goodbye but ultimately didn't wish it was this time in our lives, but how?, 4) she's in denial about drinking so did she even listen when the doctor told her the prognosis this time or will she feel she can skate through once again? 5) I'm sure there's much more I can't verbalize.

I was researching things while sitting in the waiting room for hours. I wondered why the heck I was feeling all of these things before she was even gone. Was my mind jumping to conclusions? Was I exaggerating? Was I giving up? or was I starting to face reality? I stumbled across the term anticipatory grief and that was it! It makes complete sense. I did not know this was something that actually occurred but I'm glad I'm not alone! I also am still thinking "i don't even know the TRUE prognosis so am I jumping the gun in these feelings?" though logically we can't control feelings...they just come. My father is going back and forth between denial and windows of reality, which I completely understand. He doesn't want to lose his wife. I'm unsure how to help him at the moment being hours away. They've been married 30 years so I'm also starting to think (I'm too good at that!) about what happens to him when she passes. 

Anyway, I'm cycling rapidly or simultaneously with depression, anger, sadness, anxiety, and numbness. One minute I want to punch a wall, the next just crawl into a hole, the next I feel nothing which makes me feel guilty and cold, the next just make everything stop including the workday but nope, the world keeps going and I have to try to keep up. It's difficult, to say the least. Unfortunately I have my own severe depression issues that I was already struggling with before this came up last week. Sometimes it's very difficult to keep my head above water. Needless to say with all of this, I'm highly confused what is to come. The "what if" and "when am I going to get the call" is constantly on my mind all the time and each text or call I receive I wonder if it's "the one." If anyone has any advice on how to put that in the back of my mind so I'm not constantly on edge or anxious I would greatly appreciate it! I'm also having nightmares every night of her behavior in the past, or picturing her on her deathbed, in a casket, etc. The only way to stop this is to knock myself out with multiple xanax and even with that I'm waking up almost every hour....at least without nightmares I guess  

This week I will be talking to her local doctor about pallative care if she's too weak (or refuses) to go to inpatient rehab. I don't know exactly how all that works.

Work has been wonderful and they keep saying to go be with her, help my dad, take FMLA, remote in to work from there....that's all fine and dandy, but she refuses to see me and my father is afraid if she does it'll stress her out too much and cause her vitals or other things to get critical so stay here...I don't know what they all think of me due to that, but it's just an awkward situation. ::sigh:: I'm not sure where I'm going from here. I think I'm starting to babble...I tend to do that when I try to release thoughts/feelings.

Any insight, advice, words of comfort would be greatly appreciated right now. My head is kind of spinning at this point.

 

There's just a lot of pain that accompanies the disease of alcoholism.  Even though it's your mother and you love her it still really is jails, institutions or death.  My father in law is about 48 hours from death from the same disease.  Your feelings seem extremely normal to me as your whole being was preparing for her death even if it didn't happen.  Get some kind of help as you don't want to end up with an addiction due to the stress of this situation.  God bless you.

On Monday, May 02, 2016 at 1:51 AM, Rylee said:

I'm so incredibly sad I can't breathe. My beautiful mother passed this afternoon at 12:30pm. (It's May Day).  My brother, my daughter and myself were there with her. It was so much different than I expected it would be. She stopped being able to swallow yesterday and we were told to keep her completely sedated. So we did. She started to breathe funny and was taking a breath and then wouldn't for 2 seconds, then 5 seconds then 9 seconds and then hardly at all. She made some weird noises so we asked the CNA across the street to come help us to know if my mom was passing (because I've never heard that before). The woman took her BP and then told us that my mom was failing and then a few seconds later said she was gone. She just went to sleep and stopped breathing. No noises, no odd movements, nothing. She just went to sleep and stopped breathing. We sat with her while she got colder and colder.  The hospice nurse came and took care of everything and verified that my mother was gone. She called the funeral home and an hour and a half later two men in suits came to get her.  I couldn't watch them put her in the body bag!!!!!!  I couldn't watch them take her out and take her away!!!!!  My daughter, my brother and I went into my daughter's room and waited. I made her turn up the TV so I couldn't hear the noise of the gurney taking her away. 

I didn't know until after she had been taken away that my husband had stood there making sure that they treated my mother's body with dignity and respect. He said they put a white sheet around her, buckled her in and zipped up the bag.  He told me that they were gentle and respectful with her. I'm so glad that he did that for my mother. I just couldn't see her put into that bag and taken away!!!! I'm so sad and upset I can barely breathe. Although I knew that she was dying and I was preparing myself for this event, I still screamed and cried and hyperventilated and nearly passed out because my precious mother was gone. I couldn't talk and I couldn't make the phone work to call people and when it did work I could barely breathe to tell anyone what was going on. Hospice counselor called me to talk but I couldn't talk with her. I just didn't want to. I didn't want anyone to touch me to hug me or anything. I just didn't want to deal with all this. I'm calmed down more now than I was but I'm still completely out of my mind thinking about the fact that my mom is gone.   I keep thinking though that my mom is around in spirit. I don't know if she is but my daughter and my brother have both said they've felt her around.

My brother, my daughter and I went out with a picture of my mother to a place to get her favorite ice cream treat, a hot fudge sundae. We put her picture on the table, put the hot fudge sundae in front of it with a spoon in it and then ate our own ice-cream treats, (We actually went to Yetti Yogurt). We talked about her and cried and after we were done we all took a bite of her ice-cream and told her we loved her. We left and came home.

When we were home we were going to take her bed down but the room smelled so bad of death that we could barely breathe so we aired it out and put some Scentsy stuff in there. We finally got the bed down. We had made my grandson bunk in with his brother so we could put my mom in the room so we have to set his bed back up. Otherwise, we would just let the bed stay up. It won't be until after the funeral that we put my grandson back in the bedroom but still wanted to take the bed down. My daughter said she just couldn't handle seeing the bed up and empty.  She just cried thinking about it being empty. 

Anyway... I appreciate your listening to me. I just hope I will be able to handle this week before the funeral. In our religion, we have special burial clothing and I am going to be one of the people who help dress her. That is going to be SO HARD!!! But I promised my mother I would do it and I take that honor seriously. 

I'm going to miss my mother SO MUCH!!!! 

 

There is no one to ever take the place of a loving mother.  Her love will always be there, but the loss does leave a huge void.  I am so sorry for you.