End of Life Issues

[Guest Sammy]

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...

[Anniemac]

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.

[Ry]

As Annie suggested, please call hospice. This is what they do. They will also be there and provide support for the family after someone dies.

[Guest Sammy]

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

[Ann]

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.

[Lyn]

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

[shirleyb]

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

[Guest Sammy]

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

[Tiny]

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.

[J.C.]

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.

[Rosie]

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...

[pritchie]

Sammy thanks for asking that question.

Thanks to all that replied. My Mom is not

doing very well at all and I know that time

is getting short but your posts was very helpful.

Pamela

[norme]

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.

[Guest Sammy]

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.

[pritchie]

Sammy,

I am so sorry. My prayers are with you.

Pamela

[shirleyb]

Sammy,

I am so sorry that your wife has died. It is so hard to lose someone you love. My heart goes out to you.

Much love,

Shirley

[DeanCarl]

Sammy,

I am so sorry your wife is gone. She sounds like an absolutely increadable woman and I'm sure the world is a lesser place now.

Dean

[betplace]

Sammy,

I am s sorry that your wife has lost her battle. My prayers and thoughts are with you.

Blessings

Betty

[norme]

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......

[kimblanchard]

Oh no Sammy,

This was so fast. Your wife was so young and so strong. Thank you for updating us and please know that my prayers are with you and your family.

I am so very sorry,

Peg

[J.C.]

Sammy,

I am so sorry for your loss, your wife was so young, so strong.

J.C.

[Connie B]

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.

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.

[Ann]

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!!!!

[marylou]

If you would please email me directly I will share with you what my Mother went through. Also, we had Lutheran Hospice and they gave us a booklet that gave us detailed information on what to expect and when to expect it and it was pretty on the mark. The only reason I am not writing now on what to expect (and each person is different) is because some people may not want to read that particular information. my email is michelle@mhallrealty.com please put in subject line that this is regarding lung cancer so I don't delete it.

God Bless You and your family.

[marylou]

Dear Sammy,

I posted my other reply to you before reading all the other responses. After reading them I see that what I write should not upset anyone as a lot of it is already posted. Of course each person is different. My Mom passed over Nov 28, 2003. She was 76 yrs old and was never sick before she was diagnosised with LC in Feb 03. She was not on meds or anything before she was diag w LC. My Mom was an extremly strong person right up to the end. In Oct my Mom was hospitalized with pnenomia. While in hosp we were told that she only had 2 -3 months (it turned out she only had a month left). Anyway, we were all very scared about what she would go through until a wonderful nurse named Greg talked to both my Mom and I and explained what she would go thru. He said that as her body started to shut down her oxygen and carbon minoxide levels would change. due to having more carbon minoxide than oxygen it would cause her to go in and out of conciousness (please excuse my spelling) - or in and out of a sleep like state (Hospice book explained it as going to and from the other side and after seeing all I saw, i truly believe that. He told us that most patients told him of lovely images that had while in that state, of seeing predeceased loved ones, angels and even Jesus. He said while the body was shutting down she would lose her appetite, meats and vegatables are the first to be avoided, and then other things (Hospice book explained it as she was going to and from worlds and her body did not need the nourisment as her soul did not need food). She did and got down to almost 1/2 her body weight. Hospice book said she would start picking at her clothes (she did) and said it was because she leaving this place for the other side and was shedding earthly trappings) Towards the end about all she would eat was orange sherbert. She did become very weak and had to use a walker about 3 weeks prior to passing, and then a wheelchair and then we carried her to the bathroom as she did not want to use the commode hospice provided in her room. The Sunday before she passed she had more energy and we were able to take her to the pond down the street in her wheelchair and portable oxygen. Hospice came in 3 times a week to bath her. Even though we could have done this, she really enjoyed the woman who came in as she made her laugh a lot. My Mom was not a very religious person but while in the hosp in Oct she spoke to a minister and accepted Christ. After that she was so at peace. She had been having panic attacks and had to take pills and pills to sleep. after that she told me God gave her peace and she was no longer afraid and she no longer need the anxiety pills. Also, the Nurse, Gregg, told me that most people think that the noise in their chests "death rattle" means they are drowing and he said that was not true at all. If you scroll down to the topic "we lost our mom yesterday" by marylou in late Nov or early Dec I describe things my Mom expereinced that gave me a lot of peace. Sammy, I won't lie to you and tell you that it was not as bad as I thought, because it was the worst thing I have ever lived through watching my Mom go through all that, losing so much weight, not eating, not drinking, and all the rest. But, I really believe it was harder for us to watch than it was for her. A couple of days before she passed, I knew her time was close and I think I went outside every 15 min to cry. It is very hard on us, the loved ones. My Mom would smile so big when I came back into the room. She would pull me down to her with my head on her chest and stoke my hair. I am so thankful she did that. God, she was so brave. Hospice was wonderful with keeping my Mom out of pain. They gave her pain patches and she said she really was not in pain. She did have to take a lot of medicine the last month or so. A few days before she passed over when she had stopped eating and we were having a hard time getting her to drink I asked the nurse if she had to take any more the hated medince and she told me no. She still had the pain patch to control her discomfort. The nice thing about the pain patches is that they did not knock her out or diminish her thinking in anyway. My Mom had the "death rattle" for about 2 days before she passed. The day before she had quit eating or drinking completley. I gave her ice chips, squeezed water from wash rags into her mouth. (we needed the mouth swabs to swap liquid in her mouth - but as it was thanksgiving we could not find a place open). My Mom told me she saw her Mother and her Father. I saw her lift her arms up and bring them down and around as if hugging someone. I had an airmattress and I slept in the room by her bed. The morning after Thanksgiving I got up around 6:30 - 7:00 and saw that my Mom had turned sideways in her bed. i picked her up and turned her around (she was only around 60 lbs by this time). I asked her if she was thiristy, I think she nodded yes - I'm not sure, because i tried to squeeze some water into her mouth. She did not speak that morning. I saw that her breathing was different and she had not opened her eyes so I just sat there holding her hand. Her breathing started to slow down and then it came in short little puffs. She stopped breathing for a second and then took a couple of last breaths and just stopped. She was not in any pain. I left the room to get my brother and sister and when I came back I saw that she was smiling. It was and is the hardest thing I ever went thru. I hated what this did to her, taking away her independence, all the weight loss. But, she really was at peace with it. She had some discomfort and it upset her to be so dependent upon us for everything, but i truly never saw her in extreme pain. The book from Hospice really was a Godsend. By that book we knew what to expect, we understood things she did that otherwise would have torn us up, and it also allowed us to know what she was going thru and it was not so scary that way and the book was extremly accurate with time frames on what we saw and at point she was at. The Nurse came every 3 days and as her time drew nearer she came more often. The day before Thanksgiving she told me that it was a matter of hours or just a day or two, so I was able to call all the family in to see her. I know I still have the book, I am not sure where because I still have not had the energy to go thru things and put things away, but if you would like one, please email me your address and i will order one to be mailed to you. Please know that my thoughts and prayers are with you and yours. Michelle