“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."
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!
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, 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.
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, 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.
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 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.