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Posted 10/25/2012 9:32 PM (GMT 0)
Angie, I feel it is appropriate for ESLD, too. It's about I over E: Intelligence over emotions. So you don't just react, but considerate it from an intellectual point of view; i.e., he's sick, and you are not doing yourself or him any favors by getting caught up in it. Of course, it's all going to get to you, but rant in an appropriate place: Al Anon or here, or with a friend. Just not at him. And I know it's not easy.

Hugs,
Connie
Posted 10/26/2012 1:28 AM (GMT 0)
Dear Angie,

Sometimes it is easier when you can blame the addiction. But when you can't you are faced with the raw truth of the whimsical nature of life. OK I am reading that and rolling my eyes....


Craig was a functional alcoholic for all of the years I knew and was married to him. He never missed a day of work, never lost a job...

And undoubtedly, his liver played a role in his decline, although, as you all know, he died of esophageal cancer. So, how do you not let that in? If you would only... why can't you stop?.... You could live longer...please for my sake............

In the end, I don't know. Was he right? Did he do everything he was meant to do, and it was time? I didn't expect him to live by my clock, and the things that I thought necessary.. But when you are left alone to contemplate the what ifs......

Your husband knows you love him, no doubt. In the end, he will not be the one wondering if you did enough. He has chosen not to have the transplant, for his own reasons which are to be respected. But you are the one who will have to go on. And you cannot change anything. Just be who you are. Love him. Even if it means loving a two year old.

I am praying that time will let me forget those last days of being a parent, instead of a wife. A lot of it is fading, but it will take time.

Do what you need to, and love him the best way you can. And then you get to live with it. I do smile, more often than I thought I would. You will too. But for now.. my dear, I lift you up in prayer every morning. You are right.... care-giving is not for wussies!
Posted 10/26/2012 1:50 AM (GMT 0)
Hi my Love,

It has been a while since you and I enjoyed each other as equal partners. I miss being there with you. You know that I love you and want desperately to be there with you -- stroking your hair and laughing about the silly things we did today.

But it's like I'm walking through the most dense fog, tied up with those heavy ropes they use on ships. I know you're there and I want to find you, but every time I think I'm close, your voice seems to slip away.

When the fog does thin a bit, I see you and all the trouble that I am to you. In those moments, all I want to do is thank you -- for your love, for caring for me, for not giving up on me, for being you -- then I feel the slide. Not enough time. The fog closes in and you start to disappear. Not long enough. If I can just focus a little harder, I can make it back long enough for us to share some time, like we used to.

Now what was that? Oh, the pills. No, not the Lactulose. What was I saying? I need to get to the toilet. No, I had something important to say, or do.

I love you. Thanks for caring for me. Thanks for watching out for me. Thanks for loving me. I can't wait until we're together again as a couple, and not as patient and caregiver. Not long now, I hope.

=======
I know there are many who wish they could say these things to you (or something similar) but just can't.
This is my feeble attempt at saying it for them.

Be well, John
(no replies necessary)I have to get up the creek! Now where's that paddle?
Mind-fogged again.

This was a post put on this forum by johnct in 2008 and I feel it needs to be repeated from time to time . I don't and wont comment in this thread but please allow me exception for those who struggle with this matter .

Ziff
Posted 10/26/2012 3:20 AM (GMT 0)
Great post!
Posted 10/26/2012 4:00 AM (GMT 0)
I remember when John posted that. And we lost track of him after he moved to be closer to family. Great that you were able to find it, Ziff.

Hugs,
Connie
Posted 10/26/2012 4:12 PM (GMT 0)
Wish my husband could say this to me, instead of crazy talk about packing his bags, getting his passport and "getting out of here." Now that he is feeling a little better, all he talks about is "leaving." He doesn't have a plan, doesn't have anyone lined up to go stay with, just wants to "leave". Talks about "getting his driver's license", but he has one. Is excited he found his passpost, but it has expired, so WTH? I really don't understand this (other than "he is sick".)

Guess I do. He always has the urge to travel or leave once he has been here for awhile. It is now just so impractical and he keeps talking about it and it feels like he just wants to "jab" me about it constantly. Ouch. I am trying so hard not to let this get to me. (I have talked to his friends and family and no one wants to take on caring for him even for a while, even though some of them write him that he is "always welcome.") What is up with that? He then thinks that I am the one keeping him from "being with his friends or family." I don't really know how to handle that? Any suggestions? Example, his friend from Alaska says he is always welcome there. (But how would he get there? Who would make sure he gets meds? How would he find a Dr.?) His friend in Alaska was sure to write that he is "really busy" and "a SINGLE parent now", but hubby really can't read between the lines apparently.

He is getting more and more insistant about "getting out of here." I have been trying to just ignore those comments, but it is getting so that is all he talks about now. Any suggestions would be helpful.
Angie1953
Posted 10/27/2012 12:42 AM (GMT 0)
If this is a repeat I apologize. I saw my post was on twice so I deleted one and think they both were deleted. I am just checking in to let you know I am sitting here thinking I just found my new support group (this blog), that I just realized today that I needed. I have been arguing with this angry mean person who looks just like my son for a year. I wish I had known his mind was affected by the ammonia. Noone ever told me until he entered hospital three weeks ago. Then they said confusion, noone said the anger, and I have still been getting irritated at how he treats the nurses. I was dealing with this all until today when I crashed and burned at work and had to leave. Not getting any answers is the worst. I was trying not to be an enabler and was waiting for my son to go to the hospital instead of taking him, I went home becasue he was drunk and not making sense. Then three days later I went and he was yellow and took him to the ER-he's been in since. Honestly, I think his mind was gone for a couple months, he was so aggressive and I just kept arguing and telling him to act right and get help. Acute alcoholic hepatitis and end stage liver disease. I feel so angry that noone told me his mind could be affected by high ammonia levels (he's at 120) !!! Yet nowhere to express the anger. I think trying not to be an enabler led to me being a caregiver. I'm not blaming myself, just thinking.
Posted 10/27/2012 12:58 AM (GMT 0)
Oh yea Rosarosa,
Get ready for anger, hurt, hopelessness and exhaustion. Both you and him. I also didn't realize my husband's mind was being affected by End Stage Liver Failure, until finally we went to this primary care Doctor who didn't mince words and told us what was likely to happen.
For about a year before we went to this primary care Doc, I thought my hubby was just being D--k. But no their minds are not right once they are at End Stage..let alone your son drinking too. You can express the anger here. It is a good place. I'm angry so much of the time and try to work through it, but many times there is no place to express it where people understand. The other caregivers here (and those with ESLD) give words of advise and support that I need so badly...especially when it is a really bad day. I think they (we) can do it for you, too. This disease is a horrible rollercoaster ride for both you and he, so come here often and ask questions. Many on here are very knowledgeable and have been through the mill, both as caregivers and ill folks.

Glad you are not blaming yourself, as it sounds like your son created this problem himself. Welcome and I am so sorry you had the need to find this site. I will light a candle for you and your son. I haven't lite candles for a long time and it will be good therapy for me tonight..it has been a rough day here.
Thinking of you rosarosa.
Angie1953
Posted 10/27/2012 1:04 AM (GMT 0)
A. Ziffle,
Thank you. I needed to hear that tonight.
Angie1953
Posted 10/28/2012 1:16 AM (GMT 0)
Spent a lovely fall day today with Craig's brother. Getting reading for the hurricane. Laughed, cried a little. But still had to take care of the animals.... batten down the hatches.

Pondered what we are supposed to do.... go on I guess.

Getting ready for bed and thinking of you all tonight. Praying for your strength, hope and resolve.

XO

Marie
Posted 10/28/2012 2:33 AM (GMT 0)
Thank you for your above post, A. Ziffle. Nice to think about that different perspective. Don't think about being in those shoes too often when all hell is breaking loose around you.

Actually had a very nice day, today. Rested a lot, didn't have any conflicts, confusion or arguments. Very rare, but much appreciated day, and I feel very rested. And thankful.
Posted 10/29/2012 11:08 AM (GMT 0)
Marie & CSoul

  Nice to read you both had a nice day.  Beautiful day here, too.  We don't have the hurricane to worry about, so just ordinary animal care.  One of my really tall 3 year old horses laid down in the hay pile in the sun this afternoon and I gathered up some courage and brushed him  & petted him and slide on him and just laid across his back (it was first time he had anyone on him).  It was a nice 15 minutes in the sun bonding with one of my boys.

Hubby was upset and angry today, so avoided him the best I could.  I think he is angry that I am returning to work (I guess?)...and that he is sick, of course. 

I start my new job this morning, so here I am up at 3:00 AM as I can't sleep.  Husband has been up and down all night.  I don't feel anxious, just not tired. Have a lot on my TO DO list.  A full day of things, even without work. It seems like everything I own..espcially things around the house...need fixed. (Sink, dishwasher, car, shower, computer, etc)  Just can't seem to keep up with it all....and I am not even working yet.  Wow..Hope I can do all this and work full time.  I read on here about those of you who do.  I guess it will be a challenge.  I know it would be "easier" to give up my horses, but then I would feel like I don't have ANYTHING for me...I will have become just someone's maid, cook and butt washer.

My Mom, who has been my rock and assistance through this nightmare, is leaving tomorrow for her annual trek to Arizona where she will winter.  I will miss her so much, she is such an upbeat person and so supportive of us, as this HELL drags on.

This week, I have told myself that I WILL keep my appointment with our local funeral home, and get myself informed of what I will need to do when my husband passes away.  I have put it off for over a year and a half, as it seems like such a ghoulish thing to do.  I imagine myself saying, "Oh, yea, my hubby is not dead yet, but could you give me the lowdown on cremation, prices and a TO DO list."  This is all new to me, so it feels so weird, but I will kick myself if I am not prepared, when I have had over a year and a half of Doc saying, "get prepared."  Don't know how others deal with this aspect, but I do remember my Mom's sister dieing and no one was prepared (although we should have been, we had plenty of warning),,my Mom was scrambling to find out what to do, finding a way to finance the event, etc.

Hope all those on the East Coast weather this storm safely.  Sounds like a monster storm.  Am lighting candles this morning to calm myself and have some nice scents going on while preparing for work, and to light the way for those colliding with this storm.

I will be feeding horses in the dark (well...full moon..Hunter's Moon) this morning.  They will be surprised!!

Angie1953

 

 

Posted 10/29/2012 12:59 PM (GMT 0)
Angie,

Not only did I do the funeral arrangements ahead of time, it was so easy that I want to do my own as well. I don't want my kids to have to worry about it. It is not ghoulish at all, it is something you don't want to have to deal with later. Luckily for me, Craig told me what he did and didn't want. The funeral director was lovely, too. Very caring and professional. I had a few choices, so it is possible that I got lucky. If you have a few to choose from, ask around.

I can picture you with your horse, just brushed, with the sun shining on both of you ...
Posted 10/30/2012 5:00 PM (GMT 0)
Mariel52,
Thanks for sharing your experience. I will get in and make those arrangements. My hubby years ago told me what he wanted, but over the last couple of years he says different things different days, so I think I will go with what he used to say he wanted.

Although, in phone conversations I have heard him tell his family something altogether different. But...I just need to go ahead and make the plans, since they have never traveled to see him anyway (we always went there, and now that he can't travel, they can't..or won't travel here).

Thanks for lighting a fire under my rear.

Started my new job yesterday. Should be interesting and challenging. Hope I can do it all, there at work and here at home. It is really helpful to come here and get the support of those who have been through ESLD and those who have held the hands of the ill folks. Thanks to you all for sharing your stories, your feelings and taking the time to help those of us struggling through this.
Angie1953
Posted 10/30/2012 5:17 PM (GMT 0)
I'm going to post a caregiver's post today cause I'm done in and need to whine.

I'm sick.

I pushed and pushed and pushed -- and got sick. Bronchitis that won't quit. I went to the doc and got antibiotics and prednisone and albuterol for my nebulizer and take decongestant and cough stuff.  But I'm not getting better. I have been mostly in bed for days...like 6 of them. I'm coughing like a fog horn and sleeping sitting straight up...if I lay down I drown.

Mike has a huge incisional hernia repair on scheduled for FRIDAY, so I need to get well enough to take my caregiver's uniform off the shelf again and prepare for trip and hospital and driving and labs, blah blah.  WE leave Thursday afternoon. So I have today and tomorrow to snap out of it.

But I just can't get myself together.  He has been great, done all the errands and stuff and all I've done is some dishes and some laundry. 

Where of where is my ENERGY?  Maybe after all these months it's lost for now.

How lucky are we that Florida didn't get the brunt of this huge storm and I dont have to put on a brave face for that.

Whine, whine...sorry...

Carol

Posted 10/30/2012 6:59 PM (GMT 0)
Carol, I'm really sorry you are not feeling better. Perhaps you need a different antibiotic?

You have been constantly going...back and forth to Miami and trips up north and to Orlando, not to mention taking care of stuff at home. You've stretched yourself very thin and overextending is one of the ways we get sick. Our bodies are saying, "Enough! Stop!" And if we don't, it will stop us by dumping a sickness upon us.

Just do the bare minimum for Fri. I'd recommend a mask while in Mike's room, since he will be open to infection after surgery.

Hugs,
Connie
Posted 10/30/2012 11:29 PM (GMT 0)
Sorry to hear you're feeling under the weather. One thing you might try (not a cure) is steaming up your bathroom and breathe deep. That often opens up your lungs temporarily. Even a small respite might help. Also, take it easy when possible. I know how much responsibility you take on, what with being a caretaker and helping moderate this forum. Be well.
Posted 10/31/2012 12:46 AM (GMT 0)
Want some cheese to go with that whine? Just kidding. Hope you can kick this, but glad you have been able to lay low for a while. Listen to your body.

Praying for you to have a restful slumber tonight.
XO
Marie
Posted 10/31/2012 1:08 AM (GMT 0)
Carol,
Thinking about you and sending many well wishes and strength for you to get better soon! Agree to lay low the next 2 days so you will be as good as you can for the trip. Switch to paper plates...wear the same things 3 times...the laundry will patiently wait until you are back home!
Good luck to Mike on his surgery.

Emma
Posted 10/31/2012 2:55 AM (GMT 0)
Oh man...I know that being sick yourself creates such a feeling of helplessness. Being a caregiver takes so much out of you when you are well, but can't imagine bronchities. That sucks. Hope you get your strength back soon. Am thinking of you. Feel free to whine here. Below is my whine for the night.
********

Things are getting difficult at my place. I am getting pressure from my family to sell my horses, which is really the only thing I have left that I enjoy. Don't smoke, drink, gamble, have cable, go out for movies or dinner, have my hair or nails done, buy new clothes (and don't want to do those things) yet the one thing I like to do is what my family thinks I should get rid off,,,so "things are easier for me." Actually, I think...it is so they don't have to worry about me or worry about helping me. (This fricking 2 year stretch of taking care of a terminal person is wearing on them, too, I guess.) So, if I sell my horses, then I have absolutely nothing that I enjoy or anything for my future...just constant care of a terminally ill ill-tempered old man who wants to leave for somewhere else, but no one else wants to take care of him. Nice!! Enough of that whine. Thanks for listening. Wish I could find some joy in time with husband, but it is all drudgery with no future. He doesn't enjoy me and I don't enjoy him. I think we both wish it would get over soon, before we hate each other and the past good times are long forgotten.
Angie1953
Posted 10/31/2012 3:25 AM (GMT 0)
Angie, do NOT sell your horses unless you feel you absolutely have to. They are a form of therapy for you...which you need and enjoy.

How long has it been since you've played videos of hubby with his animals and cronies from the circuses? Or would that just make him run off with the circus? There are some great videos available of B&B Circus. I just watched a video entitled Big Cats...they are so gorgeous.

Hugs,
Connie
Posted 10/31/2012 4:00 AM (GMT 0)
Angie,

Okay, I'm typing while inhaling goop from my nebulizer hoping to get some sleep tonight.

HACK< HACK

Idea: If you go to the SEARCH on the blue line above you can type in your own handle ANGIE1953 and it will sort out ALL your old posts...in reverse order.

If you went back 631 posts to July 2011, you would sound almost like you do today...you were so frustrated, even angry about where things were at your house. Then he got really ill, then you couldn't manage any more, then he spent some time in the B&B and you ran up there every day, and he got some better and you were going to take him home weekends, and then you got unhappy with the nursing home and were going to try him at home again, and you were so excited to have him home, and he was helping, and then he started downhill again, and now you are at your wits end again.

What does this tell you about what is happening?

Anything?

ESLD is AWFUL.

I can't imagine going on and on with the way Mike was in 2010 and early 2011. I would have been in the crazy house long ago. I had a lot of support from family members who came here so I could be elsewhere for a week at a time about every 3 months. That worked for me. Mostly it was his daughter who came and even she was about at her wits end at the end of a few days, but we got through.

If it had gone on...I don't know, Angie.

And I don't know what will happen tomorrow or next week here either. So far so good. But...

My thoughts are with you.

Hugs,
Carol
Posted 10/31/2012 11:20 AM (GMT 0)
Yes, I see the pattern.  Thanks for the reminder.  Just have to work on how to handle the emotions of the fact that this situation is hopeless. 

I will work on that.

Sorry you are feeling under the weather, especially when Mike has the appt coming up soon.  Hope you wake up that day and are over the bronchites. 

Thinking of all those that are victims of Sandy and hope they find solace.

Angie1953

Posted 10/31/2012 2:41 PM (GMT 0)
Angie,

I don't know if visitation from a church ministry would help you with a little more respite care. Sometimes you can find a good match with someone who would be willing to hang out with even a grumpy old man. We actually have a couple of people in our church who are retired and do this on a regular basis.

They tell me that it is very rewarding for them to help out in this way and that sometimes it does take a load off of the caregiver. They become a little part of the family for a while. And they don't take things so personally when things are nasty.

My husband actually hated this, and we ended up with just a couple of close friends hanging out with him from time to time, but your hubby seems a little more social than mine was. Do you think he could use a new best friend?

Peace,

Marie

 

Posted 11/1/2012 10:54 AM (GMT 0)
Marie,
That is a good idea. He was in the nursing home with a older gentleman that is now home and perhaps that would help. Also, we have a older pastor that is in garden club with us. I will ask him. Thanks for the advise. I do think hubby misses "Man Talk."
Thanks for the idea.
Angie1953
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