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Caregivers Sharing thread #15

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Posted 12/7/2012 3:01 AM (GMT 0)
sistersong,
I am so sorry that your beautiful sister is ill. Welcome to the forum, but so sorry that you had the need to look for it. Your sister sounds quite ill, but even though she may want it be over and is discouraged, doesn't mean she has a short life ahead of her. There are those on here who have survived a long time with very serious problems from Hep C.
My husband is one of the ones that want it over with, but we have been struggling with this for quite a while. Every one is different and this disease seems to affect all differently, even though they may have similar symptoms. As the Doc told us, the quality of life will just get worse and worse.
However, there are those on this forum that have survived very serious symptoms and lived to tell the tale ( ...or tail ).
A heated sleeping blanket for the being cold all the time and hunting underclothes (the hunters have figured out how to keep warm). Get her the hunters socks that go to the knee also. They have ladies ones now, too. (Try Cabelas online store) I got the Artic underclothes for him...the thickest they had.
As to the not sleeping at night, once my hubby decided to sleep when he is tired and get up when he is not, he did better. Although that schedule is hell on the caregiver. Seems normal that many switch days and nights and are awake at night.
This is going to be a very rough ride for you and those that love your sister. It is hard to watch someone you love go through this. Prepare yourself and come here often. It really does help to read, or post, or vent, or ask questions. Many here have been traveling this road a while and have experiences that they will share that are very helpful. So so sorry that you are going through this, sistersong.
Angie1953
Posted 12/11/2012 6:32 AM (GMT 0)
Hello to ALL my Fellow Caregiver's,

What a journey! I hate the not knowing. My husband just had chemoembolization a couple of weeks ago. I can tell by looking at him he is getting worse. His skin color, the intense fatigue and the pain he's in. Me, I'm on the edge of my seat. Things are progressing so fast. And this disease has many paralelles but is so darn unpredictable. He sees his primary care dr. tomorrow and his oncologist on Wednesday.

I'm real tried today been doing extra duty, we had carpet put in on Friday so my house was all torn apart. Slowly getting things back in order. Getting ready for some new furniture on Thursday. I hoping this cheers me up a little I've been down the last couple of day's. I just can't turn the headnoise off. And I work a program that has taught me the importance of staying in today. We've been working on getting some financial things in order. We have an investment house we're upside down on that we are trying to short sale, that will lighten my load. And we are trying the refinance the house we are in at a lower interest rate. We have an 11 year old and a 9 year old that are both in special ed. so I've had IEP's. I'm sad folks I just have a gut feeling my husband isn't going to make to transplant. I think about my kid's all 8 of them, but especially the 2 youngest one's. Oh my gosh see what I mean about the head noise. I'm just plain old tired. On a brighter note Dennis is celebrating 14 years clean on Thursday!!!

I think I'd better go to bed. I love all of you here so glad I found this forum. I'm sorry I don't post more often.

Barbara
Posted 12/11/2012 4:53 PM (GMT 0)
(((((((((((((Barbara)))))))))) Big hugs to you. Tell Dennis "well done" on his long-term sobriety. There have been many people here who feared their partners wouldn't make it to transplant, but miraculously they did! So maybe he will be one of the lucky ones. I also had fears that I wouldn't make it to transplant before the tumor became so large it was inoperable or that it would metastasize.

When I've had "head noise," I say the Serenity Prayer over and over silently, like a mantra. This works particularly well when trying to get to sleep. Praying for everyone you know also works well. These methods take the focus off one's self.

Hugs,
Connie
Posted 12/11/2012 4:59 PM (GMT 0)
@ Barbara...Have been in your shoes. And pray Dennis gets his transplant soon.

The thing I see in your post is that you have your hands full ALREADY without a desperately ill hubby!

We have had a few good days here and it is easy to put all "that business" behind us....but I know you are having dark times...and that dark days can return at any moment!

I join my hugs with Connie's. This time of year is especially hard.

Hugs,

Mama Lama

Post Edited By Moderator (hep93) : 12/11/2012 10:05:01 AM (GMT-7)

Posted 12/12/2012 6:00 AM (GMT 0)
Today was a much better day. I'll update you after the oncologist appointment. Thank you ladies for you support and hugs.
Posted 12/19/2012 12:24 AM (GMT 0)
Hello Fellow Members,

We just got some bad news today. Last week Dennis' Oncologist did labs, it's shows that his tumor maker is continuing to rise since the chemo. Interventional Radiologist moved his appointment up a week. I know this isn't good, but I won't know exactly what this means until January 7. This was another blow. It's going to be a long next couple of weeks.

Saying the Serenity prayer over and over. I'm starting my own steps over again, just finished the writting part today. I was going to meet with one ofmy sponsee's but she had to cancel. I love working with others it helps me get out of myself. And I pray for a lot of you on here and many others I know in the program who are on the journey of ESLD. We've tried to go Christmas shopping a couple of times but we both walk around the store like zombies. We are going to have Christmas dinner here like we always do, so I'm thinking thats going to have to due. The most important thing is that we're all together.

Love,
Barbara
Posted 12/19/2012 12:29 AM (GMT 0)
Barbara, the docs don't know what they do to us when they make us wait and wait and wait.

I'm sorry this is hanging over your head at Christmas time.

Glad you will all be together.

My family lives in NY and CT and we are in Florida. We will not be together this Christmas. But Mike is with me, so...that's enough.

Carol
Posted 12/19/2012 12:38 AM (GMT 0)
Carol,

I'm sorry your not surrounded by your family for Christmas. So glad you have your Mike. And you have all of us here. I personally am so blessed to have you and the others here via technology and Healing Well.
Posted 12/19/2012 12:46 AM (GMT 0)
Barbara, I'm sorry to hear that Den's tumor marker has increased. What about his liver enzymes? And have the tumors grown? This might push his MELD score up.

Hugs,
Connie
Posted 12/19/2012 10:04 PM (GMT 0)
Barbara,

 Thinking about you and your family this afternoon.     Enjoy the season the best you can.

Angie1953

Posted 12/20/2012 2:31 AM (GMT 0)
Since this thread has reached 4 pages, I am locking it and creating a Part 16.

Hugs,
Connie
Posted 12/10/2013 4:30 PM (GMT 0)
This one has gone 4 pages, so I will start Caregivers Sharing Thread #16 and lock this one.
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