Pamela

I have two things. One is a little index card that is brightly colored with the word "Grandma" scrawled in 4-year-old printing and hearts all around it. My granddaughter made it for me when I was out-of-town and she missed me. The other thing is a band-aid. I smile every time I see it because it reminds me of my husband. He is very athletic and adventurous, and he always ends up getting scraping or cutting himself. I carry a fresh band-aid for his next little adventure. Pam

Addie, I love the humor you use to describe a truly terrible ordeal! My dad was on 16 mg/day of Decadron for over 3 months, and while it's possible you may get used to it, he didn't. His symptoms just kept getting worse: sleeplessness, anger, forgetfulness, anger, weight gain, anger, insatiable hunger (especially sweets) that caused him to eat all night while he wasn't sleeping, anger (seeing a theme here?). He reached the point in one of his hospital visits where he was throwing things and cussing every nurse that walked in the door. It was terrible for him because he would lose his temper and then be remorseful, but he'd lose his temper again. He couldn't help it no matter how hard he tried. Most horrifying, however, was when his legs became so weak that he started falling down and eventually couldn't walk at all. At one point he couldn't even feed himself because of muscle weakness in his arms. The doctors did all kinds of tests and confirmed that it was the Decadron, not the cancer, causing it. Good idea to see if the doctor will switch you to Prednisone, if possible. Good luck! Pam

Good post, Fay. 30 years ago I moved from small-town West Texas to Kansas City. HUGE cultural shift for me. I felt as though I had moved to a foreign country. It took me years to become accustomed to the differences. For instance, in West Texas every clerk at every retail store knew our family and we knew theirs, so there was conversation and warmth while they ring up your purchases. In Kansas City, they don't even make eye contact or acknowledge your presence. In West Texas, drivers who don't even know each other wave when they meet on the highway. In Kansas City . . . well, let's just say I'm glad that most people don't carry guns. You're a good and thoughtful person, Fay. I love the way your mind works. Pam

I guess I can't resist adding my 2 cents to this discussion. I have noticed that many people on this forum are super sensitive to the smoking issue, and any discussion of the link between smoking and cancer causes controversy. I'm sure that as a nonsmoker I can't understand the complex emotions a smoker with lung cancer would feel. When my Dad was diagnosed, he looked at me and said, "I guess I killed myself, didn't I? We all do things that put our health in jeopardy. Some of us carry extra weight and don't exercise regularly even though we know it may well kill us. (An news item just this week confirmed the cost and incidence of obesity-related health issues.) Some of us drive too fast and don't wear our seatbelts. Some people drive motorcycles without helmets. My big health problem is the crushing, never-ending stress I allow. Try researching what stress does to your body! I think I'd be at less risk of health issues if I smoked! People with lung cancer don't have the time or energy for guilt. Let it go. It is what it is. ] Nonetheless, if we could eliminate smoking -- especially in young people just starting it -- we could spare a lot of pain for a lot of people. We couldn't eliminate lung cancer, of course, but if smoking-related lung cancer could be reduced, that would make a big dent in it. It would also force the medical industry to focus on the other causes instead of assuming that smoking did it. I remember when the campaigns started against drinking and driving. Many people were angry that they were being criticized for have a few drinks and driving. Of course, not everyone who drinks and drives has an accident and kills someone. Some people have done it hundreds of times with no accidents. On the other hand, the campaigns have certainly lowered the number of alcohol-related traffic fatalities. This isn't about judgment or about who's right and who's wrong. This is a two-pronged approach: (1) FIGHT LUNG CANCER AND FIND A CURE REGARDLESS OF THE CAUSE, and (2) TRY TO PREVENT LUNG CANCER IN ANY WAY YOU CAN! We can work on both avenues without stigma, guilt, anger or blame for anyone. Smokers -- you don't deserve to die from lung cancer and you don't need to feel guilt about it. No one does. Whatever the cause, lung cancer should be funded and researched. We need a cure. Too many people are dying. Pam

I understand how you feel. My dad died of lung cancer after smoking 65 years. I know the statistics that are quoted about former and nonsmokers, but I have no doubt that smoking was the direct cause of my dad's lung cancer. I feel certain he would have lived longer if he had never smoked. (But then he could have been hit by a bus. Who knows?) My mother died at 61 because of heart disease. She definitely shortened her life by her choices. She was overweight, didn't exercise, didn't manage her stress well, and breathed 45 years of second-hand smoke. At different points I have been angry with both of them for leaving too soon, and I wanted to go back and rewrite their histories to make the outcome different. But ultimately, it is what it is. Frankly, I think we would be angry with our parents or loved ones for dying REGARDLESS of what killed them. We don't want them to go. We need them in our lives. If we weren't angry with them, we'd be angry with the doctors who didn't catch it soon enough or the ambulance that didn't come soon enough or the tobacco companies who supplied the poison or God for not giving us the miracle we begged for. I appreciate your honesty about your feelings. I suspect that just writing what you did helped you. Underneath all the anger is terror at losing your mother and facing the rest of your life without her, and grief for the loss of things that will never be, and empathy for the horrible pain and suffering she's experiencing, and a host of other overwhelming emotions. Sometimes we unconsciously choose anger because it allows us to feel in control, empowered, while grief and pain and fear make us feel helpless. Maybe if you consciously choose to feel the other emotions, the anger won't be so dominant. No judgment here. Only compassion and understanding. This is a terrible time for you, and you will find your way. Kind thoughts, Pam

Kelly, no one who has experienced a loss will laugh at you or think you're ridiculous. When you think about it, 8 months isn't very long to "get over" losing your mother. My mother has been gone for almost 12 years, and I still cried at my son's college graduation last week because I wanted her to be there. I look at my granddaughter and think how much Mom would have loved her. When you love someone, you carry a part of that person in your heart for the rest of your life. You really need to talk to someone, either a professional or someone who's been through it. Don't judge your grief or put a timetable on it. Someday, on your schedule, you will find yourself thinking of your Mom and smiling rather than crying. You will still miss her, but it won't hurt so much. Lately I've been watching happy, contented people and trying to figure out what's different in their lives. They have losses, unfulfilled needs, pain and all the other things normal to humans, but they seem to be happy anyway. I think the difference is gratefulness. They have found a way to be grateful for everything from the warmth of the sun on their faces to the love of a parent that stayed with them after the parent was gone. So, I've been trying to change the way I view things. My mother and father are both gone now, so when I think of them, I remember things they brought into my life for which I am deeply grateful. I am so grateful to have had them as parents, to have known their love. I would gladly suffer the pain of losing them again as payment for the privilege of having them in my life. That has helped me feel more joy and less pain. Talk to someone, Kelly. There are many, many compassionate people who can help you feel better. If posting here helps, post often. We know how you feel, and we hurt with you. Kind thoughts, Pam

I am so sorry. We went through something very similar with my Dad. Another thing to watch is the combination of the steroids and the anti-psychotic. They can interact with some very horrifying results. This is particularly a risk if he's also taking other medications (i.e., Ambien, anti-depressants, etc.) or if a lung infection develops. If you start to see any repetitive jerking or even a non-responsive type of depression, you may be seeing a drug interaction. If that happens, and I pray it doesn't, I can point you to a lot of good info on drug-induced delirium and opiod neurotoxicity (information I wish we'd had when my Dad experienced this). I know this is difficult for you, but hopefully your father will come out of this and NOT remember any of it. Kind thoughts, Pam

Betty, You are a truly remarkable woman. Thank you so much for all you have given. As you face this, I hope you will be comforted with the sure knowledge that you have made a difference in the lives of others. God's peace be with you. Pam

Bill, hang on to that doctor. It's wonderful that he noticed it and took action. The doctor who prescribed it likely wouldn't have followed up. Too often a patient is given a prescription with NO information on side effects, possible adverse reactions, etc., and it can cause very, very serious problems. If you have the problems he described with prednisone, imagine the damage that can be done with Decadron. Pam

As the daughter and not the primary caregiver, let me add some of my thoughts. People who appear to be strong, who take charge and take care of things, can appear NOT to need anything. For those of you whose spouse has cancer, I think you've probably closed ranks, in a sense. You're a team of two, totally committed to the battle, going through the tough times as a unit. That's what loving couples do through bad times. When that happens, others (including children) may feel like they're on the outside looking in. The children may desperately want to help, but they may not know how. They may even think their help isn't welcomed. A spouse who is living with it KNOWS what needs to be done and just does it. But to a child coming for a visit, there's an awareness that it's your home and your schedule, and it's difficult to know what to do. Especially in the case of a stepmother, there may even be a reluctance to "intrude" into your territory for fear of offending you. My father, and I suspect many other fathers, had a hard time letting his kids see him weak and needy. His whole life he'd been a strong, independent man, the one who took care of things. Then suddenly he needed to be taken care of, and he didn't much like that. He preferred having our stepmother take care of him physically, and he wanted us to take handle the medical and financial aspects. Please ask for help, and be specific about it like Snowflake said. You need help and others need to be part of the fight. Asking for support doesn't mean you're bailing out on your spouse or that you're weak. It's just another way of fighting this battle. I really do admire the strength of the people living with lung cancer. It consumes your lives and yet you just keep going, beyond what you ever thought you could. My prayers to all of you. Pam

I love the spirited debate of this issue because I believe that is how we all learn from one another. I appreciate so much the honesty and compassion that I see here. Thank you. You've enriched my life. One note for Ann. Many cancer patients have been told the same thing about morphine, that it helps make breathing easier. However, I think everyone should understand how that works. Morphine depresses the respiratory system so that the urge to breath is suppressed. It doesn't help the air flow or open up the bronchial passages or anything else that improves the quantity or quality of breathing. It sedates the breathing mechanisms. That's not exactly the same thing as helping the person breathe easier. That's why giving morphine to weakened lungs and weakened patients hastens their deaths. If the breathing mechanisms are sedated, it takes more strength to take productive breaths. Below is a quote from the prescribing information for morphine: "Respiratory depression is the chief hazard of all morphine preparations and occurs most frequently in elderly and debilitated patients and those suffering from conditions accompanied by hypoxia or hypercapnia. Use extreme caution in patients with COPD or corpulmonale and in patients with a substantially decreased respiratory reserve, hypoxia, hypercapnia, or preexisting respiratory depression. In such patients, even usual therapeutic doses of morphine may increase airway resistance and decrease respiratory drive to the point of apnea." Whether or not it is compassionate to give this drug to dying patients (i.e., Terri) knowing it will hasten her death is another debate altogether. I could argue either side of that one. But I do think that everyone should be aware of why this drug is prescribed to dying patients (in the absence of pain). Pam

I've thought about this quite a bit, as have we all. There are several points I'd like to make: (1) If Terri is responsive, as her parents say, then she is responsive at the level of a 6-month old and does not know that she is brain-damaged. She derives pleasure from their attention. Of course, based on the medical info released to this point, that's a stretch to believe, but if that is the case, then there is no point in her dying. She's okay the way she is. (2) If, on the other hand, her brain is gone and she doesn't know anything or feel anything or think anything on any level whatsoever, (which is likely the truth), then why does it matter so much to Michael for her to die, especially by starving her to death? Terri obviously isn't suffering and doesn't know whether Michael carried out her supposed wishes. (3) Given the facts, where's the compassion? I cannot imagine the horror of what Michael and Terri's parents are doing to each other. Where's the kindness and the understanding for what each loved one is experiencing? They are just plain mean to each other, and that is a great tragedy. (4) In other words, no matter which side is right, the logical choice would be to keep her alive since no one is harmed by that choice. Personally, if it were me, I would hope that my husband would be kind and compassionate enough to spend the same 10-15 years, or whatever it took, to lovingly help my family members understand my medical condition and convince them that no purpose is served by keeping my body alive. If he couldn't convince them to let me go (and I was as totally unaware as Michael believes Terri is), then wait until they're ready. Frankly, I don't think it would have taken 10-15 years to educate her parents if it had been done kindly, factually, compassionately -- and if they had been told that the final choice would be theirs. If Michael had taken the money and put it in a trust or given it to charity or used it to honor Terri in some way, that would have removed suspicion that he just wants her gone. Michael has handled things with a cold, dispassionate attitude. I never get the feeling that he struggles with his decision, that he feels the weight of his decision. He honestly doesn't care whether her family is hurt or not. He even wants to twist the knife by taking custody of her ashes after she's gone. Now, that's petty. His attitude would certainly polarize her parents and make them go more deeply into their denial. In addition, if her brain is mush and she can't feel or comprehend anything, it might not actually impact her one way or the other if she's starved. But, dear God, why take that chance? I wouldn't do that to a stray cat! Pam

Joanie, I cannot even begin to understand what you are feeling. Every mother's worst nightmare is to lose her child, and you are living that. I expect it feels like all the colors in the world have disappeared, leaving you to stumble through in shades of grade. When I read your post, it brought tears to my eyes because I was so much like that young woman when I was 25. I was a fundamentalist Pentecostal Christian, and I knew all the answers for myself and the rest of the world. There was only one way to do everything (my way). Right and wrong were very clear-cut and anyone who didn't do things the way they "should" according to my version of the world was just foolish and deserved what they got. I went to church 5-6 nights a week and all day on Sunday. I sang in the choir and taught classes. And I stood in judgment on everyone who didn't do the same. Then life happened and my world fell apart. I learned painfully that people are more valuable than religious rules, that kindness, compassion and love are the language God uses. While that young woman appears to have everything you wanted for your daughter, I pity her from the bottom of my heart. Her world is narrow and cold. Eventually she will have to make the choice to develop spiritually or have her heart solidify into solid concrete. I hope you will be able to find it in your heart to ignore her hard-hearted attitude and someday maybe even feel compassion for her. Life will happen to her, and she will learn hard lessons or become hardened. Just as a possible suggestion, when you are considering how to deal with her, ask yourself what kind of person you want to be. She hurts you out of her ignorance and blindness. Maybe you could take away her power to hurt you by recognizing that you are wiser, stronger, more loving and kinder. I'm so very sorry that life has happened to you in the way that it has. I'll be adding my prayers for you. Kind thoughts, Pam

Peggy, I know from your posts that you are a kind, loving person, and I know my post must seem terribly cynical and exaggerated. For someone with your heart, it must seem impossible that caring doctors and nurses could participate in ending a life early. I wonder, though, if your perspective is based only on your faith in people. Before my Dad was diagnosed with lung cancer, I would have agreed with you. I can only speak from my experience and my research, but even Sharon's Dad's oncologist did not deny that the morphine may have speeded up her Dad's death. He just said it was the right thing to do. The attitude I've experienced and read about doesn't appear to be, "Hey, let's kill this guy." It's closer to, "Let's medicate this terminal patient so that he doesn't know what's happening to him, and, yes, the medication will likely make him die sooner, but that's a blessing." I want to repeat here: This discussion is NOT about pain management. If a dying person is in pain, it really doesn't matter if the pain medication ends it sooner. Stopping the pain is the most important thing. However, I was told directly by two different doctors on two different occasions at M. D. Anderson that morphine is prescribed for lung cancer patients when the cancer has progressed to the point that treatment is stopped -- WHETHER OR NOT PAIN IS PRESENT. The recommendation for my Dad -- and I was told by the Pharm.D that it was standard procedure -- was to take morphine every 8 hours around the clock -- even though Dad insisted that he was not in pain and was not having any breathing discomfort. Of course, I asked why, and I was told that it was important to have the medication in place BEFORE pain started. The oncologist from M. D. Anderson (the top cancer hospital in the U.S.) also prescribed 11 other medications for Dad -- on top of Decadron. And we trusted the doctors who told us to give him those medications. We had faith that they knew more than we did. We didn't check for possible drug interactions -- these were professionals; surely they knew more about it than we did. The result was pure horror -- the myoclonus Lillian described, as well as a list of other indescribable symptoms. The hospice nurse told us that it was "terminal agitation," and that we should give Dad more morphine so that he could "die easier." But we knew that the cancer wasn't causing this because we had just reviewed MRIs that confirmed that the cancer was stable. So we started a desperate research to figure out what was happening. When we began reading about "delirium" and the causes, it became very clear that this was caused by medications, not cancer. Unfortunately, by that time, Dad was dehydrated (because, after all, you don't give liquids to a dying man and he was jerking around so much that it was difficult to get liquids in him). My brothers rushed him to the hospital -- against the advice of hospice -- and insisted that he be given IV fluids and treatment for delirium. The staff agreed, and the "terminal agitation" stopped. Unfortunately, Dad had a lung infection that had been left untreated and undiagnosed because he was "dying", and he went into respiratory failure. That's when we agreed to put him on a ventilator. After a week on the ventilator and with IV antibiotics, we were given "the talk." We were told that it might be in Dad's best interests to shut off the repirator and "let him go" rather than going through the weaning process. You can bet we asked a whole lot of questions then. We asked how that would work, and we were told that he would be given MORPHINE so that he wouldn't feel a thing. Then we asked, "But wouldn't the morphine repress his respiratory system and make it harder for him to breathe without the ventilator?" And we were told that, yes, it certainly would, and that was why it was being given. We sat for almost an hour with this doctor asking very direct questions to make sure we were hearing what we thought we were hearing, and we were given very direct answers. He didn't use the word euthanasia, but it was clear that he was knowingly recommending just that. Unequivocal. Because we asked direct questions, he gave direct answers. If we hadn't asked, he wouldn't have told us. I was so shocked that I literally ran from the hospital, jumped in my car, and drove 679 miles nonstop back to my house. I made it in less than 10 hours. I then spent the next three days reading everything I could on ventilator weaning, morphine, fentanyl, rehab, and euthanasia. My brothers and I then decided to give Dad a chance to live, and we instructed the doctor to go through the ventilator weaning process. Dad came off the ventilator quickly and easily. Two days later -- when all the fentanyl was out of his system -- he was completely alert and aware. THEN there was difficulty weaning him to solid food because of his time on the ventilator. He worked so hard just to swallow thickened nectars and Ensure, but he wasn't getting enough fluids and we watched while his urine became darker and darker. Finally, I asked the oncologists if we could put Dad on IV fluids while we weaned him to solids. The oncologist looked me in the eye and told me -- and this is a quote, "No, I don't think we should do that. He is terminal, and keeping him hydrated won't change the outcome." In other words, why bother? He's going to die anyway. The other oncologist who was with him saw the shock on my face, and after the first oncologist left the floor, she ordered IV fluids. Dad lived almost 5 months after that -- 5 months! If he hadn't had the horrors of the medications, I believe he could have lived longer. At one point, I had heard so many different oncologists and hospice workers urge us to give Dad morphine that I quipped to my brothers, "I wonder if these guys get a kickback on morphine sales." As an aside, throughout the process with Dad, we had multiple discussions with multiple doctors and nurses because Dad refused to sign a DNR. This was at two different cancer hospitals, and they would not take "no" for an answer, but just kept bringing it up over and over. My younger brother is an attorney, and he had in-depth discussions with Dad about end-of-life care. Dad was very clear with all of us that he wanted us to make those decisions for him, not the doctors. My Dad did not suffer at the end, but I can't tell you how many guilt trips we were given because we did not give him morphine every 4 hours. I still don't understand that because there was only about 2-3 days when Dad experienced any pain at all, and we brought that under control very quickly. He wasn't on oxygen until the last few days, and that was after he'd slipped into an unconscious state. Will this scare someone? I certainly hope so. In the same way that having unprotected casual sex should scare someone. In the same way that smoking should scare someone. In the same way that drinking and driving should scare someone. Not everyone who has unprotected casual sex gets AIDS. Not everyone who smokes gets cancer. Not everyone who drinks and drives has an accident. But we get the message out so that people can make INFORMED decisions about possible consequences. Read prescribing information on medications. Ask every question that enters your head about the care being given to your loved one. Read everything you can read on everything impacting your loved one. This isn't paranoia. The doctors aren't "out to get you." They are doing what THEY think is best. Unless you tell them otherwise, they will assume that you are giving them full authority to do what THEY think is best for your loved one. They may be good people with good intentions, but those doctors don't know and love your husband or father or mother or wife the way you do. I won't post again. It took me a long time to finally work up the courage to do this, and I'll leave it here. I just wanted to give everyone something to think about. My best wishes and kind thoughts to all of you. Pam

Bill, First -- I applaud your strength and courage in being your wife's advocate. I wish everyone had someone like you in their corner! We went through something very similar with my father. On 3 separate occasions we were told by 3 different oncologists to "take him home and let him die." One doctor actively recommended that we remove Dad from the ventilator to let him die, even though there was every indication that the cancer had NOT progressed and was, in fact, shrinking. The reason he was on the ventilator is a whole different story and was related to unnecessary medication and not the cancer. I am going to use the word: euthanasia. I have come to the conclusion that there are those within the medical community who actively euthanize terminally ill patients, quietly and without informing the patient or the family, by giving recommendations that they know will likely shorten life. That appears to be particularly true with elderly patients. My brother had a friend die recently, and I'm going to quote from an e-mail I received from him: "I fear doctors basically euthanized my friend Jerry ten days ago. He was Dad's age (78) and a lifelong smoker, but had no cancer, no heart problems, and no known disease. He was overweight and had reduced lung capacity because of the smoking. Two weeks ago he suffered a recurrence of a lung infection, for which he previously had been successfully treated with IV antibiotics. (I saw him in the hospital; he made a full recovery and was alert and comfortable.) This time, however, at a new hospital with different doctors, he was given morphine, ostensibly to relieve his 'distress.' Within a few hours thereafter he died from respiratory failure -- big surprise. If you or I had a lung infection, I'm sure we would have some distress, but somehow I doubt we would be given morphine for it. But then, unlike Jerry, we aren't elderly people who have multiple health problems that cannot be reversed and who have no caregivers at home and no one who will challenge doctors for them. I think perhaps some doctors are so technically-focused that they see people as machinery, and so even people like Jerry are just worn out machinery, ready for the scrap heap -- let's free up that hospital bed for someone with better working parts that we can 'fix.' They don't even ask whether some of those people, like Jerry, had been mentally alert, without chronic pain, and capable of enjoying some things, including conversations with friends, before the event that brought them to the hospital." That is harsh, and I expect I will make some people angry by posting this, but I want to at least wave a red flag. I do NOT believe that doctors are evil or mean-spirited. I believe they deal with death and dying so often that they truly believe what they are doing is in the best interests of the terminally ill patient. I also believe there are doctors who believe that medical resources should not be "wasted" on patients who cannot be cured. This is an issue that needs to be discussed openly and constructively. We need to know what is happening so that we can deal with it as we choose, and not have someone else choose for us against our wishes. If the patient (or the family in many cases) believes it is time to stop the fight or stop the suffering, fine. But that should NOT be the decision of any medical professional. Pam

Sharon, I'm going to be controversial on this one, so some of you should not read this. I apologize to those of you who disagree with me, but I feel very, very strongly about this issue, and I have to voice my concerns. Sharon, the issue is NOT about your father's pain management. The issue is INFORMED CONSENT. You would not be beating yourself up or questioning your choices if you had KNOWN that giving your father morphine would shorten his life by a matter of days or hours. I am concerned that we have abdicated our decision making to doctors and hospice because too often we don't want to face the enormous responsibility of knowing. I believe that doctors and hospice workers are aware, either consciously or subconsciously, that morphine causes death to occur sooner. They may believe it is more humane to spare the family that knowledge. Those of us who have administered morphine to dying loved ones -- would you have made that decision with full knowledge that it would shorten your loved one's life? Would you have been able to face that likelihood and do it anyway? I would. I did. My father was in great pain for only a short period of time, and the morphine made it manageable. But I gave him that morphine knowing that it might end his life. I did it with fear and trembling, and tears, but I did it. I am relieved that his pain became manageable quickly, and we were able to manage it without morphine for the last couple of weeks. As a side note, one of my brothers did not participate in the fact-gathering and research, nor would he listen to it. Unfortunately, this brother -- on his own -- decided to give Dad morphine 30 minutes before Dad died. He did it because my stepmother was in distress about the noises Dad was making, even though everyone (including hospice) told her that it was NOT pain. Another of my brothers is having a difficult time forgiving that because the morphine most likely ended Dad's life before we could get there. Difficult, difficult subject. Difficult, difficult decisions. Sharon -- you're questioning your decision. I don't think that's a bad thing. That's how we learn in life, by reviewing our choices and deciding which choices were good ones and which ones we'd like to do over. That shows that you're a person who cares deeply about others. You're a person who wants to be the best person she can be. That's a good thing. In the end, your father was going to die. He died with you beside him, loving him, devoted to him, willing to make whatever sacrifice you had to make for him. Death doesn't get any better than that. I am truly sorry if I have hurt anyone, but I just can't let this go without voicing my very strong concerns. Pam

Six days after losing your father you are only just beginning the grief process. Do what seems comforting to you. This is a long journey, and there are many, many more facets of grieving ahead of you. Go with it and don't hold yourself to behaving any certain way. It's tough to lose your father. It hurts. But soon you'll be able to incorporate it into your life and move forward. It will still hurt, and you'll still have times when you are inconsolable. Just take care of yourself. Kind thoughts, Pam

I'm so sorry. Your family has been hit extra hard by this horrible disease. Wish I could help. Pam

Lori, I do NOT think you are selfish to want that time with your Dad. It is a profound moment to watch someone you love slip away. It is too profound for anyone to share with anyone who doesn't understand how momentous it is for you. I think you wanted to experience the moment without any distractions, focused on your father and what he means to you. My heart goes out to you. The next few days will be a busy blur, and then you will face the hard work of getting on with your life without the your father. That is tough, but you will also feel peace that you were with him to the very end, giving, caring and honoring him. That will matter for the rest of your life. Please stay with us if we can help at all. Pam

Patti, You didn't say what's being done about the brain mets. Any radiation for that? Yes, my father had severe side effects from Decadron. He lost his ability to walk at all. He reached the point where he could not even lift his legs or shift his position in bed. Once he was taken off the Decadron, he began to improve with physical therapy, but he was just too weak and the cancer had progressed too far for him to become mobile again. He hated that. Decadron is a powerful drug. It works miracles for people suffering the side effects of brain tumors and brain swelling, but it has some powerful side effects, as well. Hope the chemo goes well and you see improvement soon. Pam

Is your mom on steroids? If so, that can cause a person's disposition to change. She may not be able to help it. When my Dad was on steroids, he became very mean-spirited. At one point, he threw something a nurse, and the physical therapists refused to come into his room. I found myself becoming very angry with him. Then my older brother gave me some insight into how steroids make a person feel. After that, I was able to be very compassionate when Dad was mean. Thank goodness we were able to taper off the steroids and he became himself again. Right now things probably feel surreal, and I'm so sorry this is happening to your mom and your family. My heart goes out to you. Pam

It is gut-wrenching to read your posts, but I am so glad you are doing this. I went through this with my father last August, and the memory is still very fresh. Other than the restlessness, does your father say he is in pain? If you ask him why he is agitated, can he tell you? The agitation may not be pain; it may be something else. Please, please take the time to read www.crossingthecreek.com. Then really listen to what your father says when he is agitated. Some people think it's just irrational rambling. I believe the dying person is sorting through his life, coming to peace with it all. He may need reassurance about something in particular, and by listening to what he's saying, you may be able to understand what's bothering him. For instance, my dad had a lot of difficulty talking toward the end, but he brought up unfinished projects, like a ceiling fan that needed to be fixed. Just like him. He was a hard worker who defined his life by the quality of his work. We kept reassuring him that we would take care of it. Please keep posting. We're real people out here and we really care. We want to help if we can. Pam

I cannot tell you how much I identify with what you said. My older brother called me yesterday and expressed almost exactly what you said. He said, "Where is that guy I was before all this started? I want to be him again. Is he gone forever?" I told my brother that, in a way, we feel like we have had the foundation of our lives removed. Mom and Dad were there when we were born. They were our history, our touchstones, our mentors and guides on what to do (and not do). They were our nurturers. Mom was loving, giving, and openly nurturing. Dad nurtured in a very different way. We didn't always feel unconditional love from him, but we always felt deeply connected. We always knew that even if we fought or didn't like some things about each other, Dad would answer when we cried, and we would respond when he needed us. It was a deep understanding that made us feel like part of a chain of connectedness from generation to generation and on to the generations that come after us. No wonder we feel lost. Of course, our foundation is still there, deep in the essence of who we are. But we don't FEEL grounded yet, so we feel a bit disconnected from who we are right now. In a way, we are redefining our self images as orphans instead of daughters and sons. You are under more stress than anyone I know. With your sister's cancer, you have not had the time and internal space to focus on yourself, to find the time to sort through everything. It's almost as if you are grieving beneath the conscious mind because your conscious mind has all it can do just to cope with what's happening right now. That has to extend the grieving and sorting process. Life will be good again, but I am beginning to think it will be good in a totally different way. You will laugh again. And you will be changed by all you have experienced. But then YOU will be the foundation for the generations to come because of the strength you have acquired. In the meantime, find small joys, if you can. On days when the sun shines, stand at the window, close your eyes, and forget that it's winter. Go to an art museum, find a bench in a quiet part, and just sit for 10 minutes. Whatever it takes to give you breathing room inside. Sorry for going on and on. You are such an amazing person, and you deserve joy. Spring is coming, both literally AND figuratively! Pam

The subject is a little stark and abrupt, isn't it? But at odd moments, sometimes daily, that thought passes through my mind, and I am again shocked to realize that Dad really is dead. It just doesn't feel real. My mother died more than 11 years ago, and Dad died 6 months ago. Last night I had a very vivid dream in which Mom and Dad were both alive. I can still hear their voices, their laughter. They are gone, but they are very much alive to me. I want to touch them, talk to them, and it often surprises me to think that I won't ever be able to do that again. I'm 50 years old and yet I feel like an orphaned child. Isn't that odd? I spoke with my 55-year-old brother this afternoon, and he feels it, too. My heart goes out to those of you who have lost a spouse or a child. I cannot imagine such grief and pain. I think that grief over the loss of a spouse and grief over the loss of a parent are the same in some ways and different in other ways. I guess I'm rambling. I thought that after six months I would be closer to accepting Dad's death. But here I am. Grieving still. Pam

If I understand correctly corticosteroids suppress the body’s production of cortisol by the adrenal gland. Cortisol helps the body cope with physical and emotional stress. To quote from one website: "A person who takes corticosteroids, or has taken the equivalent dose of 20 mg or more of cortisone daily for two or more weeks within the past two years may have negatively affected the function of their adrenal gland. Any procedure that causes an elevated level of physical stress can be expected to challenge the adrenal gland to produce increased amounts of cortisol to combat that stress. If the adrenal gland cannot produce the required cortisol, the patient can succumb to a rare, but often fatal condition called acute adrenal insufficiency." That's why you have to gradually decrease the dosage, to give the adrenal gland time to start producing cortisol on its own. Pam