Sister with Hospice

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Mara2
New Member


Date Joined Dec 2006
Total Posts : 6
   Posted 12/22/2006 9:35 PM (GMT -7)   
Hello,
 THis sight has helped in my sleepless nights....looking for information on the internet.. thank you and my thoughts are with each and every one of you.
  Odd though ....now I feel the need to post. 
   My sister is 48 years old. She has known for 18 years that she has Hep C (from a blood transfusion) Yet over those years continued drinking despite many attempt from us to convince her she HAD to stop....she was even told by doctors years ago...she needed to be put on interferon ...but they couldnt do that until she stopped drinking.
 Well, we noticed especially over the past few months she has grown very weak, and only ate frequent small meals. Became very forgetful and confused at times...complaing of stomach pain...but not keeping doctor appointments... Even though family would take her she always had excuses as to why she couldnt go.
 We found her Nov 18th in her house very yellow, unable to take care of herself...she hadn't taken a shower and could only get up to use the bathroom with help. SHe was bruised from a fall.  Yet she was laughing and joking...seemingly in her own little world - oblivious to her condition. SHe initially refused my request to let me call 911-but I made her look me in the eye and I told her I couldnt leave her like this and she needed help-then she cried.  So I called 911- a call, in hind sight, I wonder if it was a mistake to make.
 SHe was admitted to the hospital and the doctors told us her prognosis was grave. Over the years we knew we would someday be facing this time if she didn't stop drinking....but its harder then I ever thought it would be. It still seems so unreal.
 SHe was admitted for 3 weeks...recieved all kinds of meds...but the doctors discussed hospice services with us...as they said nothing else can be done medically. THe doctors said to us she has liver cancer- but I have since seen her records and her alpha feto protien was negative and the culture of abdominal fluid was negative for malignant cells. That confuses me. I guess they just assumed that she MIGHT have cancer. Her blood results were all over the place....but I dont have the numbers in front of me now. I am almost afraid to research it because what if I find out the abnormal results are only mildly abnormal... if thats the case...how could she be so close to death....but she is. THey said there is a number scale that is used to gauge severity of liver disease and that her number was very high...I never asked what that number actually was.
 Well, she has been at home with Hospice now for 2 weeks. She was eating and drinking...but that slowly decreased over the weeks. SHe went from eating solid foods....to mashed foods...to baby food....but the last two days she has stopped. SHe choked terribly last time they tried to get her to drink. SHe does not follow simple commands...like " open your eyes..." or " swallow" and does not respond to turning (with pain) like she use to. SHe actually looks peaceful.  Her blood pressure tonight was 50/34-though it has been low off and on for weeks now. Her respirations vary between 8 and 12 -but her pulse is a strong 78 or 80.  My insides panicked tonight when i saw her....part of me wanted to scream .."put her on an IV..."  or MAKE her drink juice...the thought of her NOT drinking is hard for me to grasp. Because that makes the end so inevitable so real. Its like watching a person starve. Maybe she IS thirsty but she can't express that need....maybe she wants to say something to us....but she doenst have the strength to say it. Is this process typical or normal of people with liver disease? She moves her head and lips everyonce in awhile like she might be trying to communicate. But nothing comes out. 
 I wonder maybe if I had just helped her shower that day in Nov and put her back in her chair infront of her TV instead of calling 911- maybe she wouldn't be this bad now. (She went down hill so fast after she went to the hospital) 
Because she laughed then and now I'll never hear her laugh again.
 
                                                                            - A little sister-

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 12/23/2006 11:09 AM (GMT -7)   

Hi Little Sister,

You are a wonderful sister indeed. My heart is breaking for you. My husband Gene is also receiving hospice services for hils end stage liver disease but is realatively stable for the moment.

It's so easy to doubt our choices and second guess how things were handled. It sounds like your sister's encephalopathy from the cirrhosis complications was advancing quickly; you could not simply leave your sister sitting in a chair to decline alone.

The liver cancer was probably diagnosed by CT scans or biopsy. Sometimes when one's liver is so damaged even procedures to diagnosis and attempts to treat accelerate the encephalopathy. That certainly was my husband's case and he could easily have died following the paracenthisis three and a half years ago. We were new to liver failure and relied on the medical team who didn't always make the best calls.

Hospice will keep your sister comfortable. They should also be there for family to get you through these most difficult times. It is natural for the body to stop eating and taking in fluids when preparing for death. Your sister's progressive encephalopathy is also likely causing her to be comatose or semi comatose, Doing IV fluids is usually contraindicated this late in the process; especially with ascites. But it is painful to watch helplessly from the sidelines.

You and your big sister are in my thoughts and prayers,            

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 12/24/2006 11:32 AM (GMT -7)   

mara2,

I know what your going through is not easy,,you did nothing wrong by calling 911,,your sister needed attention and also needed the medical confirmation so that she can receive hospice services,,,just hold her hand,talk softly to her,play gentle music for her,,and keep letting her know she is not alone,,,,if only everyone was so lucky to have a loving sister like you to help them at the end of this horrible disease,,,you will be in my prayers,,,


trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


Mara2
New Member


Date Joined Dec 2006
Total Posts : 6
   Posted 12/24/2006 5:35 PM (GMT -7)   
Thank you both for your thoughts. It does help...and knowing that you take that time even though you may have your own heartaches to deal with. Thank you.  Its natural to second guess ourselves I know...but it feels so Unnatural to just "watch" somebody die. Thats what I feel like I'm doing. She doesnt act like she's in pain....so she is not getting much pain medicine at all.  Maybe thats a good thing...I don't know.
Our father passed on Dec 27 th  years ago...I think she may be waiting for that date herself....
 
   Thank you again and you all are also in my thoughts...

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 12/25/2006 9:27 AM (GMT -7)   

Mara2, Welcome to HW. Sorry to hear about your sister. Usually just keeping the mouth moist with a swab helps. I have been told numerous times, while they lay peacefully they have no thirst or hunger, thats what I choose to believe. IV's would probaly not be helpful at this time, it could make their breathing more difficult. I think just being there for her is the most precious gift you can give her and yourself. Just know you did the right things by calling 911, she needed help. The declines can happen so fast, and one never knows when it will happen! Some do get better for a little while others do not, but you have been a very caring and loving sister. She is blessed to have you!

(((((HUGS)))))

Teresa


Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 12/28/2006 4:31 AM (GMT -7)   
Hello Mara,
Just to let you know how sorry I am that you are going through such a hard time. I'm thinking of you and praying for both you and your sister. she's a lucky girl to have a sister like you.

I lost my sister (aged 55) in January this year (not liver disease) so I can understand a little fo what you are going through. I sat with her in hospital for three days, just two weeks before she died. She was in a state of mental confusion at the start and on the second day was in an induced coma. I talked to her and held her hand. Whispered she was not alone. She had a husband, children, grandchildren and three loving sisters who loved her. Unfortunately I had to go home on January 16th. We live in another state. She died on January 27th after a massive brain stem stroke. I know she died knowing she had people who cared about her and loved her. That's what you can continue to do for you sister. It's hard to watch her become more ill but you'd feel worse if you weren't with her.

Thinking of you and praying.
Marg
 


myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 12/28/2006 4:14 PM (GMT -7)   
hi to all the caregivers and family members of cirrhosis, this is my fathers child, annette.
hi tdt, mara. well i got over christmas ok didnt realy do anything, just kind of resting up a little, life goes on. mara you did the right thing trust me, i have second guessed my self over and over, but the end result was going to be the same. now you can feel a little better about what you did. hi tdt hows your husband doing i heard he hurt himself hope every thing is ok. this is the first week in 5 months i havent had to be at the hospital or drs, it was a nightmare that didnt want to end until my fathers body did. i still cant get over what a horrible disease it is, just glad it didnt last any longer. to all the caregivers you are in my thoughts. hope and a liver transplant for everybody waiting.
i have a friend of ours back in 98 who had a liver transplant he is doing very well and working as a sub teacher, but also went threw some very bad times before and after the transplant, almost lost the new liver because the drs lowered his anti rejection meds instead of higher, that was one bad mistake to make he turned orange, the great news is he is fine riding his harley just like he used to. well everybody have a great new years, its has to be a better year for all of you. hope you dont mind if i pop in now and then, been trying to keep up with things.

hope to all
annette

Mara2
New Member


Date Joined Dec 2006
Total Posts : 6
   Posted 12/28/2006 4:23 PM (GMT -7)   

Marg and all,

 Thank you and Marg I am so sorry for your loss. This board has helped so much.

Here what has been going on now... there have been changes and I'm totally confused and I'll admit part of me is angry. Here we have been preparing for her death...all the hospital staff had no hope recovery...so we took her home virtually to die. Like I said before she hadnt eaten, drinken or resonded to her name for six days. SHe also didn't move and would just stare blankly with a glazed look.The hospice nurses said she was "inbetween" life and death. That she was prepareing for death...so SO HAVE WE.

Now 3 days ago she "woke up" I'm telling you thats exactly like it was. SHe just responded to her name....opened her eyes. Just like that! SHe said she was thirsty and said "Yes" to the quesion if she wanted something for pain.  SHe makes eye contact for short amount of time-is trying to change positions in bed on her own.

 What is going on???? I just spoke to my mom and shes feeding her a smashed banana!! Hospice said they will have to re-evaluate her because they may have to stop the 24 hour care. (Just go down to 3 or 4 days a week with an aid) Initally we thought this had to be an energy spurt that we've been told about before someone passes.. but its been 3 days now. I dont think that "spurt" lasts this long.  Is she getting better...? I know I should be happy but I'm feeling sick to my stomach.  I tell you all the signs were text book- so far exactly what the little blue hospice book said would happen has... except this.

  Mara


myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 12/28/2006 4:41 PM (GMT -7)   
hi mara, that would make me sick to my stomach to, i dont know what the little blue hospice book says but i would enjoy what you have. who knows miracles do happen. to me if she can respond to anything its a good thing.
we only had to have hospice for a few hours, they were wonderful. thank goodness it didnt last that long. i hope for the best for your sister and her family, i hope the new year is good to you. you hang in, and let us know whats going on.

hope is all we have sometimes.
annette

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 12/28/2006 10:02 PM (GMT -7)   
hi anette:) and of course you are welcome here anytime!
mara,,,im not sure there is a book on liver disease,,,strange things happen and levels can jump up and down for many reasons,,,almost coma,coma,,then back to reality,,,,and the changes can be fast,,,,just enjoy every moment with her and dont give up ,,,
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


Mara2
New Member


Date Joined Dec 2006
Total Posts : 6
   Posted 12/29/2006 9:41 AM (GMT -7)   
Hi- sorry- I didn't remember the name of the "blue" book- its not on liver disease it is to help in understanding the things that happen during the dying process.
              Thank you for all the kind words....

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 12/29/2006 4:25 PM (GMT -7)   

eyes  trish, where did you come up with that saying i like that? i have been reading alot about the real people who deal with liver disease every day and the caregivers, its so very heart breaking to read how they dont care about them selfs and still go on drinking it realy flips me out, and everybody else is going nuts trying to keep things together.

i know you love them so very much yeah but sometimes how do you do it?

they dont even know what caused my fathers cirrohsis its down as unknow origin, because he hasnt drank for 25yrs at least, no hepC, and he was never a drinker, he wasnt on hardly any meds before we found about this. the hard part for me is i dont know how he got this other than working in a chemical factory for 30yrs. thats all we can put together. i love this forum its keeping me sane right now, because i know im not alone in this. cool please take care and be safe, have hope

annette

 


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 1/2/2007 11:40 AM (GMT -7)   

Mara2, My husband has looked like he was at "Heavens doors" many times and he bounced back. He has been in comas and stupors, I have even though well this is going to be it. Then his labs get better and he is more lucid, hungry and thirsty. It can really be just amazing and confusing, how they can make such a turn around. I do hope your sister continues to do better, it is not impossible for her to stabilize, for awhile, maybe she could be considered for a transplant. It would be worth checking into. Prayers continue for you and your family.

Teresa


Mara2
New Member


Date Joined Dec 2006
Total Posts : 6
   Posted 1/3/2007 6:31 PM (GMT -7)   
Just to let you all know once again of my gratitude for your thoughts and words of understanding.  My sister did pass away this afternoon. My mom and another sister and myself were with her the entire time. It was a long ordeal and at times a struggle in the night....It still seems so surreal...but now she's truely out of pain.   

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 1/3/2007 11:58 PM (GMT -7)   

I am so sorry Mara2, it is very hard to lose someone you love. My prayers to you and your family.

Teresa


Jim's wife
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 1/4/2007 1:28 AM (GMT -7)   
Mara2. Grace to you and your family. Your cared so much!

Venita
Venita and Jim
Wlmington DE

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 1/4/2007 6:11 AM (GMT -7)   
oh mara,,,,,I am so sorry for your loss,,,,,,but Im truely glad your sister is not suffering anymore...:huge hug for you: You and your family will be in my prayers.
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 1/4/2007 6:13 AM (GMT -7)   

so sorry about your sister, she knew you were all there for her , it can be pain full but you know she is not in pain anymore. i know how you feel. now you have to take care of yourself, my prayers are with you and your family.

myfatherschild

annette


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 1/4/2007 12:46 PM (GMT -7)   
Dear Mara,
 
I'm always at a loss of words at these most difficult times. But you are in my thoughts and prayers. I'm glad you and the family were there with your sister at the end and that her suffering has ended.
 
Hugs,
Barb
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


Mara2
New Member


Date Joined Dec 2006
Total Posts : 6
   Posted 1/4/2007 4:22 PM (GMT -7)   

Thank you all for your kindness.

 Keeping this in perspective helps me when things get emotionally overwhelming. By perspective I mean...without sounding cold hearted.... my sister made some bad choices and did not take the opportunities to get help offered her over her life. The true tragedies in life are the familys that get killed by drunk drivers....the innocent children suffering from leukemia ...the child sitting on his front porch that gets shot by a gang members bullet...the person dying of liver disease that has tried to take care of themselves...etc. To think there are also people,like my sister, who live thier lives in a manner that will ultimately end their lives....it is very sad and painful to us left behind....but compaired to what others go through....it is not a tragedy...its just very, very sad. In no way do I mean to lessen the effect it has on those of us that experience it....I'm just trying to keep this in perspective....during a time when I need all the perspective I can get.

  My thoughts to all.

 


myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 1/5/2007 4:44 AM (GMT -7)   
mara2, when we found out my father had this horrible disease i had no idea how overwelming it was going to be for the whole family. it was a dead run for 6 months i mean non stop. but i always kept thinking how bad somebody else has it untill i heard somebody else say that my pain was just as real and it mattered just as much as the next persons. your pain is very real. when somebody is as young as your sister its hard to put it in perspective. i still keep beating my self as to if i would have made him change drs 4years ago would things been different, maybe i will never know. my father was the one who tried to take care of himself. its very hard to loose a loved one i dont care how old they are. the only thing you can do now is get on this forum and talk about it. it has been a god send to me. its like this life will go on. my thoughts are with you and your family so take care of yourself now.

myfathers child
annette
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