Death and Dying comments

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1Shelly1
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   Posted 1/26/2009 6:01 PM (GMT -7)   
The question arises often in these threads "How will I know that my loved one is actually dying?" This is difficult to answer because there is no set way that someone passes. I can tell you some of the signs we look for in the hospital in evaluating end of life. Usually, sleep patterns become longer and longer, with liver disease the patient sleeps most of the time, interaction is limited and lucidity is minimal even when awake. Often the skin and eyes turn yellow(jaundice), urinary output is minimal, urine is dark and often foul smelling due to kidney failure. In the final stages the patients breathing patterns change and becomes more shallow and they only breath about 6-8 times a minute which decreases as death approaches. (Normal breathing patterns are 12-16). As the patient slips into coma there is no verbal interaction at all. They sleep until the end of life as we know it. I have always told families to continue talking to the patient, express your love, forgive them for what ever has happened. I am convinced that the hearing is the last thing to go so make sure that whatever you want to say or have been afraid to say should be said then. Lastly, I also believe that death is more peaceful for the person if we tell them it is OK to go. It brings them and us a sense of peace. I think I should add that if the patient is awake and able to swallow they should be medicated to make sure they are out of pain. If they are not awake but we know the end is near we get their morphine (most commonly used) in disolving liquid. (it is such a small amount that is given in a dropper so they don't choke. I hope this helps a little. Just remember that there is no ONE way to die. Everything is variable. 
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/26/2009 9:58 PM (GMT -7)   

Thank you for that input, Shelly!

For those who don't know, Shelly is a nurse and has been very generous in sharing her knowledge with us, as evident in the educational threads.

We appreciate you, Shelly!

Hugs,


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


NC Mountain Girl
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Date Joined Jan 2009
Total Posts : 13
   Posted 1/28/2009 8:13 PM (GMT -7)   
Thanks for posting this, Shelly. I have heard stories of people waiting for their loved ones to get to the hospital, sometimes for hours, before they die. Strangely enough, my husbands uncle is at home, very ill, and they have called in Hospice. The doctors are amazed that he is still living b/c he is so eaten up with cancer all over. He is in the middle of a lawsuit with the coal mining company he worked for and in turn, ended up with black lung. He told my mother in law that he was waiting for the hearing so he could die in peace.

While death is such a personal issue, it is comforting to me knowing that it is something every living being in the world has in common. It doesn't seem so lonely that way.
hmmm.......

hep93
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Date Joined Jul 2005
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   Posted 1/28/2009 9:40 PM (GMT -7)   
NC, I witnessed that last month.  I had been in touch with my aunt in a nursing home and she wasn't doing well.  She had an infection that antibiotics weren't working on (I think it was necrotizing fasciitis, the "flesh eating disease.")  She had also had 2 strokes since Sept. and was unable to talk much intelligibly.  I told her on the phone that I thought I should go down there since she wouldn't talk to me on the phone (actually I felt in my gut that she didn't have much time.)  I made arrangements for the trip and a niece down there told her I was coming.  I saw her on a Sat. and she knew me and that I was there.  Sun. she didn't know we were there and seemed to be semicomatose.  And on Mon., she died.  I think she had been waiting for me to get there, as we were extremely close and basically grew up together.  I still miss her, but am so glad that I listened to my intuition and was able to say my goodbyes to her.



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


1Shelly1
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   Posted 2/4/2009 11:09 AM (GMT -7)   

Another question that is frequently asked is "How much time do we have before my loved one passes away?" That is a very ambiguous question and difficult to answer. I think most importantly people want a time frame or an "about" right? Every human being is different and their own physical responses to illness is different. Everything is dependent on the symptoms they have and at what stage of the disease process thay are at, and how well they are responding to treatment. For example, our own Hep93 has stage 4 and has successfully battled liver cancer among other things (and we thank GOD that she has done so well) and yet she is doing great. (Again we thank GOD for her recovery everyday) Someone else can get diagnosed one month and pass away the next. It is all variable and really difficult to say. Most Dr's are reluctant to give a time frame because of these factors. However; the question is legitimate and needs to be addressed. Therefore; I would reccommend that the family member caring for the patient at home, significant other, or the surrogate ask the Dr for a frank answer. Just remember that there is no "absolute" response, only an educated guess by the healthcare provider based on all the things I have listed above. Also, if the person does not follow Dr orders, refuses their meds, or continues to drink (if that is a factor in their disease) then the odds are far greater that the patient will pass away much sooner. Time frames are just a reference and nothing more. Every day that we have with those that we love is a blessing.

I don't want to create confusion about the question itself. Everything is based on individual circumstances. I hope this helps a little.


 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


mo719
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 2/4/2009 7:30 PM (GMT -7)   
It's odd that I am replying to this post since my mother's death, who was also my best friend died (20 years ago). My mother was a natural fighter and she always came out of her medical issues(there were several). One thing I will say, before you ever ask a loved one to fight think long and hard, esp. when there is no hope. I came back from my honeymoon and she was in the hospital, she was tired of fighting but I had my young daughter that I wanted her to know. I was selfish...she fought for three months in the hospital. To make a long and painful story short, she was in a comma at the end...I rec'd a call at work to come to the hospital, it was a false call and she lived another week.  The hospital had nothing but angels as nurses, and my father had made the decision to stop the kidney treatments.  That afternoon I leaned over and whispered to her that I released her from her promise...to this day I swear she moved her head in a yes acknowledgement, early morning she died, I rec'd the call from my father at 6:00a.m  Thank god he did not have to live with that decision that her death was natural.  After so many years of her being ill, and watching her fade away, especially the last 3 months....there was a guilty relief. Her suffering had ended, the exhaustion I saw on my fathers face and almost living at the hospital,was over. It was a horrible surprise to me that I found peach and relief. Consequently,  I caution my friends if they have been caregivers,there is nothing to be ashamed of... but to be aware of what they might feel. I have no idea if this was a proper posting or not for this subject, but I felt it important, and if it helps one person it was worth it.  As I face the unknown with my husband and not knowing how long we will be given it is something I keep in mind.
Mo

Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 2/4/2009 8:00 PM (GMT -7)   
Mo, I think your response was very appropriate for the subject. Thanks so much for that. I'm sure it will be helpful for many. It has really touched my heart. I will continue to pray for you and yours.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/4/2009 8:11 PM (GMT -7)   

Shelly, I'd like to address part of your post, and also part of Mo's.  I asked the hepatology oncology surgeon how long I had left and he couldn't say...didn't want to be pinned down.  So I asked him to give me "an educated guess."  He seemed more comfortable with that, and told me if I had no treatment at all for the liver cancer, I had 6 mos. or less.  Unfortunately, I didn't qualify for much, but I went headlong into what I could get--and thank God it worked.  Part of it was attitude, I think.  I just never felt it was my time to die.

Mo, when I was visiting my aunt and could see that she was miserable...not in pain, but just so unhappy that she couldn't speak and had no appetite, and was obviously failing physically.  I really did not want to see her like that.  The niece by marriage who was with me told Aunt B. that she needed to fight.  That really angered me.  She was almost 81 and had been disabled since the age of 13.  She had fought all her life to rise above that...with great humor and spirit.  She worked all her life, when she could have gotten disability income, and she was treated badly at work.  She lived through breast cancer and a mastectomy.  She had been so happy and carefree in her retirement, until 2008, when her health finally started to fail.  So when the other niece said that she needed to fight, I replied that maybe she's just tired of fighting...and I saw the faintest nod from my aunt.  I was giving her permission to let go and 2 days later she passed away.  I miss her terribly, but know she never would have wanted to live like that.

Just some of my experiences.

 


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 2/5/2009 9:52 AM (GMT -7)   
Dear Mo,
 
I thought your post was so insightful.   I guess each day I have these conflicting feelings for my friend.   I can see how tired she is and frail.   I made a decision to tell her everything I learned as it seems appropriate, but I don't want her to think that she must DO something for me or anyone else.   She still makes dinner sometimes and helps with little chores around the house, but mostly she is lying down and/or sleeping.   She hangs on, but is too sick and tired to see her grandchildren. Her children, both grown, see her some, but mostly it seems like she's just waiting.   At first I thought I should try to "spur" her into action, but I realized that my role is to inform her and give her help if she wants it.   Othewise, our friendship is just that...   We are friends.    I don't want to fight with her or tell her what to do.   I just want to be her friend through all of this and help her find peace as she has helped me to see the peace and joy in my own life.    Some of life's best lessons are learned at the hardest times.    Again, thanks for writing what you did.   It made me feel better about this new territory I am travelling on.   
 
Joan

Pink Grandma
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Date Joined Nov 2006
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   Posted 2/5/2009 10:01 AM (GMT -7)   
Ditto to you Joan.  Your post is wonderful too...........what a good wise friend you are..........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.


jujub
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Date Joined Mar 2003
Total Posts : 10391
   Posted 2/5/2009 11:01 AM (GMT -7)   
My mother died in 1987 of liver failure due to metastatic colon cancer. As the nurse in the family, I had to decide when all the hard decisions needed to be made - when to put her in the inpatient hospice, when to insert a catheter (she was wanting to sit on the commode virtually all the time and it was hard on her skin), when to stop trying to encourage her to eat orally. We did talk to her the whole time, and told her that we loved her and it was okay to let go. She held on, I think because she was worried about how her own mother would be without her to watch out for her. We told her who and how Grandma would be cared for.

At the end, she waited until our "shift change" when my sister-in-law, who stayed with her at night, left and my father had arrived but no one else was there. My dad said that at the end, she got the most beautiful smile on her face, took a deep breath, let it out and just didn't breathe again. He was really comforted by the way she passed.

Don't be afraid to talk and laugh, even when people are at the end humor often appreciated and appropriate. Remember, death is simply the last stage of living. It isn't the end.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/5/2009 2:06 PM (GMT -7)   
Thanks for your input, Judy!  It's appreciated!  :-)
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


NC
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 2/7/2009 9:21 PM (GMT -7)   

Hi Everyone,

It is now been 11 weeks since my dear wife passed away from complications from NASH.  The above posting really hit home with me.  My wife dealt with various medical complications for several years, Graves Disease, High BP, difficulty swallowing due to GERDS,among others...and she was always able to fight and overcome all of the problems, she kept on working hard, never complained, no matter how sick she was.

I thought that she would beat this too...  I kept telling her that she was the strongest person that I have ever known, and that she could overcome this.  She told me a couple of weeks before her death that she was getting tired, and did not think she was going to make it through.  I told her not to talk that way, she had to make it for her son's sake, and mine.  Even in the ER on her last day of life, I kept telling her this.  Shen she passed I blamed myself for not doing more, or finding a magic solution to help her...  But I realize that I am not capeable of controling life, no matter how badly I need her.  Only God can make that call.  I am now so releived that she did not have to spend a lot of time suffering with this disease like she could have, God spared her from this, she had already been through so much in her life.

I will always miss her like I would miss breathing.  I would have spent every hour of every day taking care of her every need if she could have stayed with me, I would have traded places with her if I could have.  But I must remember that God has a plan for each of us, and we will see me and my son through this life.  We live our lives as she wanted us, and try to make her proud each and every day.  We live for Christ our saviour, because it is through him that we will have eternal life in a much better place, without all of the tears, pain, and suffering.

God bless each and every one of you on this forum.  I feel that you are all extended family.  I pray that you all overcome.

 

NC


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 2/7/2009 9:51 PM (GMT -7)   

NC, thank you for posting.  I know how very much you miss your wife and how difficult it has been for you and your son to go on without her.  You do seem to be handling it very well.  What a lucky lady your wife was, to have someone who loved her so very much.  That is a rare and beautiful thing.  Just continue to make her proud.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


hep93
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Date Joined Jul 2005
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   Posted 4/24/2009 10:57 AM (GMT -7)   
Bump.
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 4/27/2009 6:05 PM (GMT -7)   
Bump.
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 5/12/2009 11:50 PM (GMT -7)   
Bump.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Helper of Mankind
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Date Joined May 2009
Total Posts : 40
   Posted 8/1/2009 6:27 PM (GMT -7)   

I cannot imagine.....taking care of my brother minus the emotions I have.  I don't know that it will be possible.

He was diagnosed in April and has deteriorated from a stage I to a stage III.  He is caught in a wheel.  Two weeks ago his ammonia levels were so high he was borderline comatose. 

Today, he is suicidal and is on his way to the hospital.   I am at a loss.  We cannot approach him until he gives us permission.  I feel that each day that passes is a day lost.  A part of me has started to fade away..........and my brother is here.....


"To others we grow old, not to brothers and sisters.

We live in each other's hearts, share each others dreams and laugh at private family jokes.

We remember family fueds, keep each other's secrets and grieve family sorrows. 

 We live outside the touch of time."  Author Unknown


1Shelly1
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Date Joined Oct 2007
Total Posts : 502
   Posted 8/3/2009 6:16 PM (GMT -7)   
Helper of Mankind, I know what you mean and I really feel for you. Is it possible you could become his healthcare surrogate? That way (as you know) you can make some decisions for him. He is obviously out of control and needs a surrogate. Since you are in the medical field you would be familiar with all the terms, tests, and diagnosis. Is it possible in a moment of lucid thinking you could approach him with that idea? May I ask you if you feel guilty because you can't do more to save him from this disease? If you do then let me tell you that I felt tremendous guilt in not being able to save my mom. I was angry, sad, and guilt ridden. I was able to help complete strangers and in some cases save their lives and yet helpless to heal or help my own mother. Watching our loved ones suffer is a nightmare for anyone who has experienced it. There seems to be no time out or relief from the pain we feel and the helplessness we have. I can only try to comfort you by telling you that you ARE doing everything you can. Your brother knows that you love him. He knows that you are there to help him. Somewhere deep in his brain and most cetainly in his heart, he knows. You are feeling the same emotions, fears, and anxieties that we have all felt so don't question those emotions. They are normal and natural. It's all part of coping. Give yourself a moment to regroup, take a deep breath and a nice bubble bath. Be kind to yourself.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Helper of Mankind
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Date Joined May 2009
Total Posts : 40
   Posted 8/6/2009 5:45 PM (GMT -7)   

1Shelly1  I thought about the surrogate in the beginning, but now that his wife is here, she is and has been making wise decisions.  My brother is out of control.   I am in the medical field but at the same time it is not benefiting him.  It is benefiting my mom and siblings.  I have explained, educated and answer as many questions as I can.  But my brother is to the point that his attention span is approx 15 minutes.  I have guilt and it hurts.  My dad was an alcoholic and I have watched as a child the effects.  My brother is selfless, our siblings  are worried and scared for him.  It's like we are all in a room and the boogie man is coming up the stairs.

I don't know how you got through your ordeal, with your mom.  It must have been heartwrenching to be next to her knowing that all avenues had been exhausted.  I just don't understand sometimes how there could be so much pain........and no end in sight.  I've always felt that I was being pushed down a dark hallway ........not wanting to go......but in the distance I could see my brother and he wanted me to be there. 

 


"To others we grow old, not to brothers and sisters.

We live in each other's hearts, share each others dreams and laugh at private family jokes.

We remember family fueds, keep each other's secrets and grieve family sorrows. 

 We live outside the touch of time."  Author Unknown


1Shelly1
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Date Joined Oct 2007
Total Posts : 502
   Posted 8/6/2009 6:42 PM (GMT -7)   
Helper of Mankind,
I can say from my own experience that we as human beings are much stronger than we think we are. What seems like an impossibility becomes possible. I've given it alot of thought over the years and I have come to the simple conclusion that we cope with all horrors in life because we have to. Watching your brother suffer seems like too much to bear and yet you do. You are a wonderful sister and daughter. Your wisdom will help the family cope with his disease and the process that it takes. Your mom probably relies on you alot right now for your strength and knowledge. I know because I was in the same position with my family when my mom was so ill. I can tell you though that I cherish every minute I spent with her. It didn't matter if she was confused, or a little mean, I didn't care. I just wanted to be near her because I knew that time was limited. When she was admitted into hospice I stayed all night with her for 4 nights, I slept in the hospital bed with her so I could hold her. I am not suggesting that you do any of these things. Just letting you know that we all cope with impending death in different ways. For me I guess I recieved comfort from being so close to her. I talked with her, sang silly songs, and read to her because I knew from a medical perspective that she could still hear me. She had been heavily sedated while in hospice and finally was in coma. That didn't stop me at all. They can hear you. You too will cope.....because you have to. You are going to be OK.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 

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