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End of Life Issues


Guest Sammy

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Here's a request for sharing your experiences that I think would be of huge benefit to all caregivers approaching the end. My wife was diagnosed with stage IV lung cancer about a year ago, and her disease has progressed to the point where she's expected to have about two months or so left. One of the things that really causes a lot of anxiety to me and her mom (primary caregivers) is not knowing what to expect. If those of you who have already experienced a near ones death from lung cancer would share what the last couple of months were like, I think it would be invaluable for all of us in this forum. We would appreciate as much detail as you could share, what basically happens from here on to the end (and also how the end comes). And any tips you may have in minimizing discomfort (ie. due to pain, shortness of breath, side-effects of pain-killers etc) and maximizing dignity (ie. bathroom, feeding etc.) and minimizing emotional distress (drugs or otherwise) would be really useful. I know this is a really tough and probably too detailed a request, but it would really help so many of us...

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Sammy, good questions. I am facing the same thing with my husband. Do you have access to hospice care. They can help you with all types of help, from caretaking to grocery shopping to spirtual help. We just stared hospice yesterday, so I know there are members out there with some answers for us. I'm sorry your going through this.

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I can share what happened with us. It took us all by surprise, so maybe our ordeal will help someone if their loved one took an unexpected turn.

My dad was doing well--we all thought. Ironically, he was NED (No evidence of disease in his lungs) He was on maintenance chemotherapy and had just begun radiation because they have found one small bone met in his shoulder and a few days later discovered one small brain met.

Things were still hopeful, his appetite was still ok, he was making it thru the treatments without complaint other than that he was tired. My dad had been to the brink and back---for almost a year he went down hill at first- to needing a wheelchair-- then back up and gaining strength and walking unasisted again. When his radiation began, in the matter of two weeks- he quickly went back to a walker and then the wheelchair and then suddenly he was having trouble sitting up on his own. He still ate, but he was so weak... We expected this to get better eventually.

My dad never complained. Call it an inherent male thing, but he was strong and proud to a fault. We never knew that in the two weeks since beginning radiation, that he had developed terrible sores in his mouth, that his body was very sore and that he was in alot of pain (in his mind, probably all due to lack of activity and laying around all the time) He took a few more pain meds to compensate and never complained. A few days later his appetite was totally gone and the nausea that always followed his chemo took its toll and we guessed that his blood counts were low and that he needed rehydration. We talked him into going to the hospital. He hated this idea, but went anyway-- He knew he was really sick.

Once in the hospital they rain tons of tests. A bone scan revealed that daddy had mets throughout his skelatal system and that his liver mets (unbeknownest to us had been growing) and his liver was failing. His blood pressure was very high and all of this we were told was indicitive of respiratory failure. He was given 24-48 hours to live.

We thought we were going in for a blood transfusion or iv fluids. We NEVER expected to hear this news.

No one ever told daddy. He had about 4 days in the hospital where he was talking alittle and coherent, but he never did eat. He was in some pain and we allowed pain meds to be administered exactly the same as he had been taking them at home.

The hospital staff tried to talk us into giving him morphine every hour as needed. I know that high-dose morphine expedites respiratory failure and I objected right away. No one would be causing his death or taking him except for God. Daddy never EVER did what the doctors predicted. They gave him 4 months to live and he lived 11 months and 21 days. In the hospital they gave him 24-48 hours to live, he lived 11 days. He always had to do things his way! And lucky for us. Everyone had a chance to fly in and hug and talk to him and say their goodbyes. 20 minutes after the very last grandchild arrived on the 11th day, my dad passed away.

But I guess I'm jumping ahead. They kept my dad on oxygen 24 hours. NO one told us that is could dry out his mouth or cause him discomfort --it wasn't until his lips became chapped that I asked for moisture lotion to apply inside and around his mouth. And I always used a wet washcloth to wet his mouth -because he couldn't drink (he was on IV- but still, something wet and cold on your tongue is nice) They had to switch from a nose "tube" to an oxygen mask because he'd always pull the tube out of his nose. The mask (because he wore it for 10 days) rubbed a sore on his nose--I guess the combination of the pressure and the cold air blowing on his skin. -what out for that too--

Even in a coma-like state I know he heard me. I talked to him all of the time and he seemed more calm and in less discomfort when I talked to him and hugged and kissed him. When I would cry very hard, he would kind of move like he was trying to comfort me.

They used a catheter and depends for bowel movements. These were used after he was semi-conscious so I don't believe there were dignity issues for him, thank god.

We never knew what to expect. They say that there is a "death rattle" in a way a person breaths before they die, and my dad never had this. He breathed very deep and loud and slow thru his open mouth and it never wavered for 11 days. I was in denial and thought that there was a chance that he would get better.

Daddy had breathed thru his mouth for several days, he never closed it. Only slightly moving his lips when I put the wet washcloth on him. He never closed his mouth until the last day.

That last day-

The last grandchild had arrived from out of state. There were 8 of us to see him. Usually it was either me or my mom every single minute of the day- intermittingly other relatives came and stayed for hours with him too.

That last day, after they saw my dad, the family went into the waiting room to have some breakfast. Only my brother and I were in the room with dad. Just like everyday before it, I held on to my dad's hand and laid my head on the bed next to him arm. Dad's breathing did a little jump and then there was a little gasp.

My head popped up and I looked and my brother John. We locked eyes for what seemed like forever but it was only a few seconds...we waited for him to take another breath --but he didn't.

John ran out into the hallway yelling out for everyone and they all came running in and the nurse came as well. We were in tears and I had fallen into a corner of the room- balling into the wall. She put her stethascope on his chest and told us that his heart was still beating! We were so happy! SHe told us that this will happen alot before the final time and that it might be scary....(I had visions of my dad holding his breath and thinking...HAHA just kidding...I gotcha) I didn't care! He didn't die!!

We were relieved in our ignorance. We all just stared at Daddy and he did the most amazing thing.... His mouth began to move! It hadn't closed in a week! And he was moving it really slow and it looked like he was working those jaw muscles or like he was trying to talk or something.

We all looked at each other 'did you see that?' "oh LOOK" , He's getting better, he's trying to talk----someone said.

And after he moved his mouth two or three times- his mouth closed all the way- lips together --and he gave us the sweetest smile I had ever seen!!

We were in awe!

It lasted just about a minute or two. Then the lips came apart and his mouth went back to open position like it had been before -when he had been breathing thru his mouth.

Then it dawned on me.

In the entire time, since that little gasp for breath --until he smiled at us...I didn't remember hearing my dad take another breath.

I looked at my brother and told him to get the nurse back in. She came and listened to his heart again. This time, after a little while, she looked up at us and shook her head. The room erupted into tears and sobs.

That's how my dad died.

I don't know if any of this helped you or anyone else or not. IT was wretching putting all of this into words. I haven't even spoken about it to anyone else "outside" of who was there that day. Not even my husband.

Please let me know if there is anything I can do for you. May god grant you the strength to endure and the peace to know that you are not alone.

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Katie,

I couldn't help but cry as I was reading your message. Thank you so much for sharing. I hope I speak for a lot of people in our situation, that reading what you have gone through really gives us a lot of comfort in knowing that there are others that have gone through similar situation, and also to emotionally and mentally prepare for that--i'm sorry that you had to write all this down, but i really do appreciate it.

We are asking her visiting nurse to switch over to a hospice nurse, their advice is helpful but really no substitute for the guidance we get from others who have gone through it.

Thanks,

Sammy

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First. let me say that I am so sorry you are going through this terrible ordeal. Although the suffering is often unbearable for the LC patient, the caregivers must suffer also...without the benefit of pain medication to numb the pain! I lost my husband, age 50, on December 15, 2002 to small cell lung cancer. I cared for Dennis at home. Hospice was called two weeks prior to Dennis's passing. They began in our home on December 2 and Dennis lived until the 15th. They were wonderful and I felt I benefited as much as Dennis from their care and understanding. The beginning of the end really began around October. All during chemo, Dennis had a great appetite and only suffered minor bouts of nausea. He was in quite a large amount of pain due to the spinal mets. As Dennis' appetite began to dwindle, so did his strength. I felt the main cause of the decrease in appetite was the fact he was so drugged from all the pain meds. It was hard to eat when he was constantly sleeping. SO...after discussing this with our oncologist...he decided to try radiation to ease the p[ain from the spinal mets. It seemed the radiation really zapped him and was much harder for him to deal with than the chemo had ever been. He suddenly had NO energy. Walking became a real task and it would take such a long time for him to travel from one room to another. The doctor seemed not too alarmed about the lack of eating, as I was giving him Ensure and he was taking fluids very well. It then seemed all at once, on the last week of a 30 day radiation period, that he just "stopped." He could not get out of a chair. He became confused...not able to distinguish between the television he was watching and real life. He was confined to a hospital bed , unable to get up even with help. The pain was so bad that he would cry when we tried to move him just enough to change a hospital gown or straighten him in bed. He was still taking some fluid up until December 13th. On that day, he seemed to quietly slip into a semi-coma. He would occasionally try and open one eye when you would call his name several times. I do believe he could hear but was too weak to respond. On the night of the 13th, the entire family was by his bedside the entire night, fearing it was his last. He did develop the "death rattles" at about 10 o'clock in the evening. The Hospice nurse had left medication for this. I had to place the drops under his tongue and hope they would dry up the excess secretion causing the rattling noise. Thank God they were very effective. This was a very touchy moment, as my children (grown men) were panicking, as they kept saying it sounded as if he was drowning. They wanted to call 911, but we had already decided against any heroic measures, as we knew the end was inevitable. I only had to give him one dose of the medication. He did make it through that night and actually seemed to be a bit better on Saturday. Saturday night was also much better and I managed to get a few hours sleep while my son sat by his father's bedside. Then, when I awoke very early Sunday morning, Dennis was very restless. He was talking to someone unseen and saying "NO, No, No." I had a hard time watching this and sat down beside him, held his hand and had a long heart=to-heart talk. I commended him on his bravery. I told him we had done everything...best doctors....best treatment....and then I told him he was tired and needed to rest. Had some more loving words about our life...then kissed him goodbye. I prayed, then held Dennis's hand. Within minutes, he was gone. No pain, no struggle, just one deep breath and then no more. I know this has been rather graphic and lengthy but I wanted to give you my experience...one I wish someone had shared with me to ease my fears.

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Thank you, Katie & Ann for sharing your experiences with the rest of us. I'm sure the words were not easy for you to write and relive. It is helpful to hear of others experiences and what to expect. God bless you both & hope 2004 is a better year for you.

Lyn

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Katie and Ann,

Thank you both from the bottom of my heart for your very insightful posts. My situation was nothing like yours and at this time I don't feel it would be a benefit for anyone to read about it. But both of your experiences were what I had hoped for for Randy and I and the kids, but God saw fit for it to be very different from yours.

Thank you both for all you do on here.

Much love,

Shirley

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Ann,

Thanks so much for sharing. I'm glad to see that the end was so peaceful, i hope it is the same for my wife, and that they will be in a place free of pain and full of joy

Sammy

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A very good website posted some time ago by someone else. It may give you some additional insights into the dying process.

http://www.crossingthecreek.com./

And as others have said, Hospice is a valuable resource. We used them for both of my parents because it was their adamant wish to pass away at home.

Thinking of you and praying for wisdome and strength at this tough time.

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Sammy,

I was alone with my husband, we had help, but no family, so I lived

throught it alone, what did help me was a site I found

http:www.cancerpage.com/centers/Transitions/Index,asp

The rest I had to learn by my own, Mike wanted to die at home,

he did, he was bedridden only 6 days, and I spent every minute

with him, I kept talking to him about all the good times we had,

how much I love him, that I knew he could not suffer more than

he was, all the time there was music in the background, the one

he liked, the nurses were looking after his physical needs, I was

looking after him.

He was councious all the time, even if he could not speak anymore

and part of his eyesight was diminish, his hearing was perfect

and he was able to make himself undersood with his hands.

At the end he could not eat anymore, he took only some liquid

and slept only at night and that how he went during his sleep.

I am glad I kept him home, se was so scare of hospital and now

for me it is as he is still with me.

No death is the same but they are the only release from the pain

they have.

J.C.

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Thank you all for those replies to sammy.

Our family is not there yet and hope to try to beat this thing, but... your stories have touched my heart. You can see the healing process working through your words.

God's richest blessings to you all...

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Sammy, just saw this post and thought I would add a few words. I have personally been through this three times in the past and all three were completely different.

My mom's lung cancer went to the brain. As I can recall, 1972, she seemed to be doing fine, had a lobe removed then one day she developed a seizure. That led to a brain scan and mets were found in the brain. She was able to function for a few months but then she started failing and we placed her in a nearby nursing home. My father and I stayed with her mostly around the clock. When she went into the nursing home, she walked in that day with me at here side and that was the last day she could walk. For about three more weeks, she ate some and conversed with us. Then one day she went into a coma and remained in it for about three weeks and then the Lord took her. She wasn't any different that day then she was the day before. My father had just arrived from work and was going to go home, change clothes and relieve me shortly. He had no sooner left the nursing home when all of a sudden she started into the death rattle. His home was only two blocks away, he was called immediately by me for we had a phone in the room for just that purpose but he never made it back in time. She passed away immediately.

For my father, he to had lc, he took chemo and radiation and was always having problems. He never had an appitite. He only ate as little as necessary. At that time, a patient went to the hospital for 21 days to get chemo treatments. That was 1973. I remember I took him for another round of treatments one day only to find that they could not get a vein to do the treatments. I had to stop them for they kept trying and trying and it just wasn't working. I brought him home with the dr telling me that day that he would have about two months. To make a long story short, he walked into the house with my help, got in bed, never able after that to get out and was gone on the third day. He told me that day he was dying and I thought he meant he knew he was not going to make it, but he actually meant he was in the dying process that day.

My brother to had lc and had hospiceand this was in 1998. He had an extremely hard time breathing during his illness. He never seemed to gain any strenght when given chemo, only made him extremely ill so he decided to stop the chemo. About a week before he died he was very weak and each day was getting weaker. He chose to go to the hospital hospice unit, was place on morphine, for he made me promise to do that, for he knew his wife would not. He didn't want to suffer anymore so I saw to it that he got morphine every so many hours. He lived about three days and then went with the Lord. Those three days were more in a coma type state.

So you can see, no two lc deaths are alike. Right now my husband is very sick with pain. He is sleeping a lot and eating very little. His only hope now is Iressa. I have no idea if it will work or not and if not, I have talked to a friend who is a nurse in hospice. I do not want to call hospice until such time as i can no longer take full care of him if it gets to that. It is not that I don't like hospice for I do. It is just that when I do call them then I know it will be the end and I am not ready to say goodbye. I am placing all my hopes and dreams in Iressa right now.

Just know that one can suffer or not suffer. One can seem okay today (by that I mean they are with us and talking some and eating some but weak and tired) and turn on a dime and be gone. Just make sure someone is always with her if you think that her time is almost up here on this earth.

I hope this has helped some.

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I posted my original message a few days ago to prepare myself for the oncoming weeks of suffering as my wife entered her last couple of months. She passed away 5 days after I posted my message, and it really was nothing like I had expected. The irony is that now I will respond to my own message and describe the end of my wife's beautiful life.

My wife was diagnosed with lung cancer in Jan, 03 at the age of 29. She had never smoked or drank, and she lead and extraordinarily healthy lifestyle, so lung cancer was never in the picture. Hence, by the time it was diagnosed, it was already at stage IIIB/IV. She went for first, second, and third line chemo treatments for a period of six months. She tolerated them all very well, but unfortunately so did her cancer, there was no response to any of them. She then started taking Iressa, which she did for the last six months, although it too had virtually no positive response, but also few side effects.

All of the stories of death from lung cancer made me expect that once she started to decline, she would spend 6-8 weeks bedridden, in pain, unable to go to the bathroom, eat, or drink, until the end. That was why I posted my original question, asking for help in preparing me for this. My wife very specifically told me she did not want to die that way, she was extraordinarily strong mentally and physically, and she felt she could walk around until the day of her death. I didn't really believe her. The strange thing is she was right. Monday was the first day when she spent the day in bed, and first time she took morphine, but she took it in very low doses, because she still was not in any great pain, but mighty great shortness of breath. However, by the evening she actually felt good enough and had enough strength to get out of bed, get out of the room, and go to the living room to watch a couple of episodes of her favorite TV show and have some dinner. All positive signs, I thought. However, that night was really difficult. She never complained of either pain or shortness of breath. But she was restless, and despite two Ambients (sleeping pills), she couldn't sleep at all. And then in the early morning, she finally said good night, went to sleep and stopped breathing.

Norme, you had said no two deaths from lung cancer are alike, you couldn't be more right--I honestly had never heard nor expected someone to go the way my wife did, but it was typical for her to carve her own path.

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Sammy,

I am so so sorry for your young and beautiful wife to have passed through this earth at such a very young age. I don't like to see anyone die no matter what age for I never want to let go but my heart really hurts when the young die.

I am relieved that her death was good, for she did not have many bad days as we both know it could have been. Instant heart attacks or car accident deaths are hard to take because they are instant but there sure is something to be said for the instant......

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Dear Sammy,

Oh my goodness, I am so very sorry to hear your young wife lost her battle to this monster that lurks within so many of us, smokers and non-smokers alike. :cry::cry::cry:

Sammy, I too lost my father, mother, sister and grandfather to lung cancer, along with many friends. And like Norme said, NO TWO LUNG CANCER DEATHS SEEM TO BE ALIKE! I totally agree with that. My father was like your wife, he was walking around, although he did have pain, the night he passed he was watching the Lucy Show. I had gone out to dinner and was gone for about 3 hours when I returned my mom said dad passed away. When I left for dinner I asked him if he was okay and he said, "Oh sure, you go have dinner and a nice time and I'll be here in my chair when you get back" HE wasn't. My mother also was coharent until the last 12 hours when she slipped into a coma for 12 hours and passed away quietly. My sister also was coharent up until her last 5 days, when she too slipped into a coma and them passed on. My dad was 54 yrs of age, my mom was 66 yrs of age and my sister was 43 years of age when they passed and yet they were all different in so many. My grandfather was 84 when he passed and he smoked a cigarette right up until the day he passed away. My dad, sister and grandfather had NSCLC and my mother had Small Cell. I hate this disease.

God bless to you and please know your in my thoughts and prayers as you go through your loss.

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So sorry to hear of your wife's passing. She was so very young! You and your family are in my prayers. I hope it will be of some comfort to you that she did not have to suffer as much at the end as some of our loved ones did. Please consider it as a blessing from God that He saw fit to spare the two of you from some of the pain and suffering associated with this disease!!!!

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