still here, maybe, i think

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shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 10/26/2008 5:10 PM (GMT -7)   
Hello everyone,
I have been trying to keep up with everyone by reading when I can. The time or better yet the brainmatter to write have been lacking. I have been battling as a caregiver to do things the right way( I have OCD ). Lets see we cant have to much fluids cause of acites but wait we cant dry out the kidneys because of the lasix. Oh but lets not forget no beef limit other meats and have plenty of vegtables, oops that doesnt work well either cause he has a potassium issue now and half the veggies and friuts and grains have too much potassium. Here honey have some lactulose and no I am sorry your Limo isnt here yet for you to run for president I will call and check on that as soon as I have a minute! I am sorry I misunderstood you I thought you were running fopr president, were moving to the west wing? When? I guess I better start packing....... maybe a little extra lactulose honey! No dear we didnt move the bathroom outside please come back here and I will show you where I moved it too.... hehehe! Oh you dont have to go... my mistake I thought you did.
Sue
When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/26/2008 8:49 PM (GMT -7)   
Hi, Sue!  That was a very graphic depiction of what's going on at your house.  Being patient and understanding must be difficult at times.  So glad you checked in with us!

Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 10/27/2008 2:05 AM (GMT -7)   
Hi Sue

I can't imagine what that is like to have to deal with such confusion. I am sure your time is limited but glad you let us know that you are hanging in there. May you find the patience to continue on this journey.

Lucy

Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 10/27/2008 10:54 AM (GMT -7)   
yeah  boy Sue I can sure relate to that yeah . It is so hard to keep up with all of this!  The Rifaximin has really helped my husband with the confusion but I swear he's just not there anymore have to compare it to Altzimers.  SO SAD.
 
 
Judith

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/27/2008 5:41 PM (GMT -7)   
Boy, Sue can sure can relate too. Those memories still come back to haunt me every now and then. It's one tough balancing act huh?

Remember to take care of you also. Grab a few minutes at least everyday for you..........Thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/28/2008 6:23 PM (GMT -7)   
Hi Sue, I'm sorry you are having such a rough time. I really hate this disease and the encephalopathy that goes with it. My husband is rarely himself here lately (again). One of these days I'll figure out what makes him worse. He can go for weeks being really aware then out of the blue the enchalopathy starts all over again. So here I sit waiting for it to pass and administering the lactulose. The confusion hasn't been as bad as what your husband is experiencing. I can only imagine what you are going through. I will keep you in my prayers.
Butterflythree
 
There is always hope!


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 10/30/2008 8:07 PM (GMT -7)   

Hi Sue

You summed up my world for the last 18 mths.  You really did a good job of it.  I can actually laugh about it when its put your way.  I think I lost my sense of humor a long time ago.  I'm working hard to try and find it.  Now that you mention it I have a little OCD myself.  Trust me your life will become a LITTLE (notice I said little) easier if you can learn to give up that part of it right now.  Just hang in there and keep doing the good job you are doing.

JoAnn


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 10/31/2008 2:19 AM (GMT -7)   
:-)  So glad to here your hanging in there. I went in my limo today . You really need to get away from him ,and take a break. I'm sure he would understand. My husband sometimes goes out for the day to the library or to visit . I like to be alone sometimes to. That gives me more time to   sad sad Cry,Cry,Cry: That seems to happen more often. So very very fortunate to have someone like my husband put up with me.
shocked  Wakes me up a bit.when I see it from your side. Sometimes I don't understand how he can deal with me.  I seem to be loosing lots of stuff lately. Including short term memmory . Thank God I can still remember the before part of my life.
    Mayo couldn't do the dobu echo. when I was there last month because my potassium was to low. So they sent me home and said . Get it done at home. Made an appointment which I was dreading .  That was today. That's the worst test for me. Well they didn't seem interested in my potassium levels . Nurse just took my pulse and said it was to low. Don't take BP meds for 4 days prior to test. I had gone without them for 2 days already. Pulse 50?
     Imagine eyes   eyes      I lost my glasses I cry. Only had them for a few months. Cost over 300. Then the other day I lost my keys. Big loss again over 200. to replace. Fortunately they turned up under the car seat a few days later. Cried when I found them. I'd just like to slip into a quiet coma. I'm just so tired. Still can't sleep. Have tried everything.
     If my tears could fix this disease . Everyone would be healed. God Bless All Caregivers
 

Post Edited (june17) : 10/31/2008 3:37:10 AM (GMT-6)


WorriedSis
New Member


Date Joined Oct 2008
Total Posts : 2
   Posted 10/31/2008 7:56 AM (GMT -7)   
confused Well everyone this is my first posting here. Let me tell you why I am here. My sister is 41 years old and an alcoholic. She has cirrhosis. Let me start at the beginning. My family, like many others, is a mess. After our Dad died almost 14 years ago my sister did not communicate with the family. then one day about 2 years ago she contacted our mother trying to get back in touch. Our mother is messed up, but that's another story that I will talk about later on. Anyway, we all began speaking to each other once again. I visited my sister and found she was drinking all the time...about an 18 pack of beer a day...and smoking like crazy. This continued on and I had limited contact with her but we did communicate. Then in May, about the ninth of the month I think, her daughter called us to say my sister was oin the hospital. Come to find out she was admitted because of acites and that is how I found out she had cirrhosis. She was told by a doctor that she had 3 months to live if she continued to drink and a year if she quit. It seems 70% of her liver was scar tissue/dead. when I visited my sister in the hospital she looked like she was going to die that moment and the nurse had the audacity to ask me if i was going to take her home! I told her no darn way. I mean she was barely conscious and could not hardly walk and they wanted to discharge her! Unbelievable! You see, my sister has no insurance and medicaid denied her so I guess they felt they should throw her on the street. Well, what did they do? they actually called the sheriff and had her removed from the hospital! They took her home and dumped her at the curb. She couldn't walk and fell down her steps trying to get in to the house. Her daughter showed up but she is a 19 year old brat who doesn't care about her mom. Next thing I hear is my sister is being evicted from her home and she decides to go to live with her friend in Florida. I thought I couldn't take her in because I live in a tiny 3 bedroom home with my husband and 4 teenagers so I let her go. After about a month or so and talking with my sister we decided she should come home with me. I rearranged rooms and moved things around and brought her home. After fighting with social services for medicaid and being denied and fightoin with social security disability and being denied we were at our wits end. My sister could not see a doctor , the local clinic said they were not equipped to take care of someone in her condition, emergency rooms can't do anything and she was just getting worse. All the time in more and more pain. We were beside ourselves fearing she is just going to stay in pain and get worse and just die that way. I mean social security disability tried to say she could work when she can't hardly stand or walk! Those people make me so angry! Anyway, we have contacted Hospice who is going to help my sister. They have gotten her medical records, have brought her needed medications and have done some counseling with her. They are amazing! A God send! My sister has also recently found out she is going to be a grandmother for the first time. this made her happy yet sad because she thinks she will not be alive when the baby comes. The people from Hospice have told her that she should make it her goal to stay alive until the baby comes. I have looked at the information Hospice brought and I guess my problem is that I am having a hard time dealing with all of this. I guess their involvement kind of confirms she will be gone soon and I don't know if I want to face that fact. How do I get through this? I and my family are the only ones she has? her 2 grown children don't care about her, our mother & brohter are the same and her 9 year old son doesn't know how serious it is. I am in disbelief fo the whole situation. I can't grasp it! i don't know who to talk to. I have not met with Hospice yet myself since they come to the home when I am at work. Does anyone know if they will be able to help me with this? How do I find out how long she actually has? Do they, Hospice, have this information? How do I arrange for a funeral when I am barely making it week to week in this economy? I am so confused! Any one out there with suggestions? Ideas? Thanks!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/31/2008 11:27 AM (GMT -7)   

WorriedSis, welcome to the forum.  I am so sorry you are having to deal with this horrific situation, but there are many here who have been in your shoes.  I am sure you will find a lot of support here.

Hospice is a fantastic organization.  They are very good at keeping patients comfortable and also knowing when the end is near.

Has your sister stopped drinking?  That is the most important thing for her to do.  Also, if she can eat, try to give her a diet of fresh fruits and vegetables, and lots of pure water.  Is she on any medication?  If she has ascites, she should be taking a diuretic, such as Lasix.  She also should limit or eliminate salt from her diet.  I suppose she is still smoking.  That's a hard habit to break and may not be possible for her at this time.

It's a shame that she let her condition get to the point where nothing can be done.  However, you just have to go forward from this point.  I commend you for taking her in.  I know it can't be easy.  If you find it difficult financially, you might be able to get food stamps, at least for her.  Also, be persistent with SS and Medicaid.  Is her 9-year-old with her?  If she has a child under 18 in the home, and meets financial criteria, she could get Medicaid.  Otherwise, she needs to have official confirmation that she is disabled.  She may, however, be able to get emergency Medicaid.  I am surprised that the hospital didn't pursue that while she was inpatient.  Do not give up on SSI/SSD.  Almost everyone gets rejected the first time.  I was rejected twice and it was going to court...then my attorney called and said that they were approving me and there would be no court appearance.  It would be in her best interest to get an attorney...or you get one for her.  There will be no cost unless her case is approved by SS--and then it's a set amount of 25% of her lump sum back payment.  Don't think it's not worth it because she doesn't have long to live, because just how long is quite unpredicable.  A lot depends upon the care she receives and what she does to help herself.

I'm sure other members will have input for you. 

You might want to start a new topic (at the top of the main page) to introduce yourself to others.  I'm afraid your post may fall through the cracks here, as you told your story on someone else's post.  If you start a new topic, everyone will see it.

Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


WorriedSis
New Member


Date Joined Oct 2008
Total Posts : 2
   Posted 10/31/2008 12:00 PM (GMT -7)   
Thank you fo ryour post. She has stopped drinking...hasn't had a drink since she was in hospital May 2. She has gottne an attorney and people with mental health and hospice are going to help with that. her nine year old lives with his dad and yes she gets some food stamps. The most important thing for her right now is getting the meds she needs. Hospice is providing that., They came by yesterday and were with her for 3 hours. They are great people!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/31/2008 12:12 PM (GMT -7)   

I'm so glad to hear that your sister has stopped drinking.  Also, I agree that Hospice is awesome.  I'm so glad that they are getting her meds for her.  However, the attorney's fees will be automatically taken out of the lump sum back pay if she is approved, before she even gets it.

Hang in there, and feel free just to vent if you need to.  wink


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/31/2008 7:06 PM (GMT -7)   
Welcome to the forum WorriedSis. I am so sorry that your sister is so ill. This disease is such a horrible disease. I know it must be very hard watching your sister suffer. You are a great sister for taking care of her in her time of need. My prayers will be with you and your sister. Hang in there. I know this is a tough road, but God answers prayers.
Butterflythree
 
There is always hope!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/31/2008 7:47 PM (GMT -7)   
June, I am glad to hear from you. I'm sorry you are still having so much trouble sleeping. I will continue to pray for you.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/31/2008 8:56 PM (GMT -7)   

{{{{{{{{{{{June}}}}}}}}}}}}}}

I'm sorry I didn't see your post earlier.  I hate to hear you sounding so "down."  Are you on an antidepressant?  Perhaps it would help.  Also, some are good for sleep.  It's bad enough that we folks with liver disease are tired all the time, but it becomes impossible to function without decent sleep.  I suspect that might have something to do with your frequent cries and blue feeling.  PLEASE discuss this with your doctor.  There must be something you can take for sleep which wouldn't be injurious to your liver.  I take 20 mg of Flexeril about 45 min. before I want to go to sleep.  It helps make me sleepy, as well as prevents muscle pain during the night.  When I still have trouble going to sleep, I repeat the Serenity Prayer over and over to myself, like a mantra.  At some point I fall asleep.   :-)

Big hugs,

Connie


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/1/2008 1:23 AM (GMT -7)   
June, I posted a reply to you yesterday. Apparently I was over tired and did it wrong, because it didn't post. Now I have forgotten what it was rolleyes

But please know that we are thinking of you and praying for you. Hang in there....I know it's tough most of the time but you have a lot of friends here who care about you. Please know that you are in our thoughts and prayers everyday............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 11/1/2008 4:52 AM (GMT -7)   
Worriedsis

Just wanted to add my welcome to the forum. I am so glad that you have gotten hospice involved in your sisters care. They are a wonderful service and very compassionate. Hopefully they can help your sister get through all the red tape that it takes to get her medical care covered.

Good luck to you and your faimly.

Lucy

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 11/1/2008 5:00 AM (GMT -7)   
June

So glad to hear from you but sorry you are so down. I know that there are times when it is easy to get frustrated with the problems that this disease causes. If you are not currently on anti-depressants I hope that you discuss them with your doctor. I know that things are so difficult right now and we can all use the extra help that anti-depressants can give us to get through.

My thoughts and prayers are with you

Lucy
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