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Post by Lola m on Feb 11, 2005 13:25:44 GMT -5
I am here to vent. My parents have gone insane. My Dad saw the oncologist today and learned that he had at best 6 months to live. One of my Doctor friends tells me that once the cancer has spread from the pancreas, the life expectancy is 3 months, but another Doctor friend assures me that some oncologists are incurable optimists so the difference in prognosis is minor. My parents think that he has only six months. The oncologist did however give them some hope. My Dad is in a lot of pain, which he treats by taking Panadeine Forte which causes constipation. Consequently, according to them (i.e. my parents and the oncologist)he does not need any different pain relief - just more drugs for the constipation. However, and this is where the insanity kicks in, the oncologist was able to give them an unexpected ray of hope. The cancer is too far gone to allow chemo as a treatment option. However, my Dad is strong enough for him to undergo chemo as part of his pain relief strategy. Apparantly this works for 30% of all patients. My parents are excited by this and he starts chemo next week. I am so stupid that I do not understand this at all. A success rate of thirty per cent is not good given that my Dad is guaranteed to suffer all the normal side effects of chemo. If he is considering such a radical step it seems to me that he must be in more pain than he is telling the oncologist which suggests to me that he needs different drugs. The oncologist has not made a second, follow-up appointment. I know the problem is denial: my parents can't rid themselves of the idea that chemo means prolonging my Dad's life. Ian, the kids and I are going to see my Dad next week. By all accounts he is going downhill very quickly. I suspect that he has less than 8 weeks left. I would not be surprised if he reaches the end before we return home from our trip on the 24th February. Hopefully, I will have resigned myself to my parent's right to live in denial before I get there and the temptation to talk them into reason will have vanished. Hoping that they will have independently reconsidered and decided against chemo would be foolish. On the way home from the oncologists appointment, my father informed my mother that they will have to grit their teeth. I will be trying to follow his advice and say nothing. Thanks for reading. I know that I am ranting. Parents can be very difficult and frustrating. I do not want my Dad to have chemo. Bu then I do not want my Dad to die either so there are a whole lot of things that I need to resign myself to not getting. Vent away, Kerrie! There are no good answers here. And, unfortunately, we are often forced to simply watch the choices made by parents or others with little ability to alter their path. Often, all you can do is be there. Love your dad and mom. Tell them that. If possible, perhaps just mention other options that they may not have considered, etc. (Hospice care, for example, which can often be provided at home and does not seek to reduce or extend life, but rather to do what it can to improve the quality of life for whatever time is left.) Offer to help as you can, to talk to doctors if they want, etc. But, ultimately, it will come down to your father doing what he wishes to do. And that may be hard. Take what hope you can from the knowledge that chemo affects everyone differently (in that, not all react with major side affects, and certainly not always right away) and that, since it is for palliative care, it can be abandoned if it does not show results. There's really nothing I can say that will actually help, I know. But at least you know you can come here and let off steam. We'll be the best listeners we can. (Including listening to you if or when you want to say "stop offering advice, I just want some sympathy right now". ) Lola Sending all the best thoughts and wishes I can your way.
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Post by SpringSummers on Feb 11, 2005 15:05:16 GMT -5
I am here to vent. My parents have gone insane. My Dad saw the oncologist today and learned that he had at best 6 months to live. One of my Doctor friends tells me that once the cancer has spread from the pancreas, the life expectancy is 3 months, but another Doctor friend assures me that some oncologists are incurable optimists so the difference in prognosis is minor. My parents think that he has only six months. The oncologist did however give them some hope. My Dad is in a lot of pain, which he treats by taking Panadeine Forte which causes constipation. Consequently, according to them (i.e. my parents and the oncologist)he does not need any different pain relief - just more drugs for the constipation. However, and this is where the insanity kicks in, the oncologist was able to give them an unexpected ray of hope. The cancer is too far gone to allow chemo as a treatment option. However, my Dad is strong enough for him to undergo chemo as part of his pain relief strategy. Apparantly this works for 30% of all patients. My parents are excited by this and he starts chemo next week. I am so stupid that I do not understand this at all. A success rate of thirty per cent is not good given that my Dad is guaranteed to suffer all the normal side effects of chemo. If he is considering such a radical step it seems to me that he must be in more pain than he is telling the oncologist which suggests to me that he needs different drugs. The oncologist has not made a second, follow-up appointment. I know the problem is denial: my parents can't rid themselves of the idea that chemo means prolonging my Dad's life. Ian, the kids and I are going to see my Dad next week. By all accounts he is going downhill very quickly. I suspect that he has less than 8 weeks left. I would not be surprised if he reaches the end before we return home from our trip on the 24th February. Hopefully, I will have resigned myself to my parent's right to live in denial before I get there and the temptation to talk them into reason will have vanished. Hoping that they will have independently reconsidered and decided against chemo would be foolish. On the way home from the oncologists appointment, my father informed my mother that they will have to grit their teeth. I will be trying to follow his advice and say nothing. Thanks for reading. I know that I am ranting. Parents can be very difficult and frustrating. I do not want my Dad to have chemo. Bu then I do not want my Dad to die either so there are a whole lot of things that I need to resign myself to not getting. Oh, Kerrie. I am so sorry. Concentrate on having as peaceful and rewarding a time with your father as you can, and on giving him as restful and rewarding experience as you can. This must be so very hard. All my thoughts and prayers are with you and yours. And I join Lola in saying : vent and rant as much as you please! It is good to have a safe place to be able to do that, and I want you to know that this is such a place.
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Post by Kerrie on Feb 12, 2005 14:16:59 GMT -5
Thanks Lola and Spring. Knowing that people are listening does make it feel easier to prepare myself for next week when I see my parents again. Luckily the urge to lecture them or metaphorically knock some sense into them has passed: I am working on controlling the eye-rolls and sighs of exasperation. And trying to make my fake smile of approval look more convincing! At the moment it looks a bit grimacy!
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Post by karenH on Feb 12, 2005 14:32:20 GMT -5
Thanks Lola and Spring. Knowing that people are listening does make it feel easier to prepare myself for next week when I see my parents again. Luckily the urge to lecture them or metaphorically knock some sense into them has passed: I am working on controlling the eye-rolls and sighs of exasperation. And trying to make my fake smile of approval look more convincing! At the moment it looks a bit grimacy! {{{Kerrie}}} I've been praying for you and your situation for a long time now. I have no good words to help you and am hesitant to say anything in case it might be the wrong thing. I went through this disease with both my son and my dad. All I can tell you that it is better for some people's sanity if they latch on to any glimmer of hope, and if that means to try chemo treatments on the off-chance that they work, then that's what they'll do. My son didn't want to give up and he was lucky that his treatment worked. My dad decided against treatment at first, but when he saw Lewis going thru the treatments, it gave him hope that maybe he should bear the pain and he went through radiation treatment, but not chemo. His cancer had advanced to the point where chemo wasn't going to work. Lewis also tried natural health therapy, and we believe it was the combination of both that helped him. I don't know if that is an option for your dad, but it did help Lewis handle the radiation treatments much better. It's hard to see your loved ones suffer from the treatments, but even harder to see them suffer from the cancer itself. I'll be praying for strength for both you and your family and like Spring and Lola have said, try to cherish the moments you have left. {{Kerrie}}
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Post by Kerrie on Feb 12, 2005 14:39:44 GMT -5
{{{Kerrie}}} I've been praying for you and your situation for a long time now. I have no good words to help you and am hesitant to say anything in case it might be the wrong thing. I went through this disease with both my son and my dad. All I can tell you that it is better for some people's sanity if they latch on to any glimmer of hope, and if that means to try chemo treatments on the off-chance that they work, then that's what they'll do. My son didn't want to give up and he was lucky that his treatment worked. My dad decided against treatment at first, but when he saw Lewis going thru the treatments, it gave him hope that maybe he should bear the pain and he went through radiation treatment, but not chemo. His cancer had advanced to the point where chemo wasn't going to work. Lewis also tried natural health therapy, and we believe it was the combination of both that helped him. I don't know if that is an option for your dad, but it did help Lewis handle the radiation treatments much better. It's hard to see your loved ones suffer from the treatments, but even harder to see them suffer from the cancer itself. I'll be praying for strength for both you and your family and like Spring and Lola have said, try to cherish the moments you have left. {{Kerrie}} Thanks Karen. I am sorry to hear about your son and Dad. That would have been incredibly hard. Your prayers and support mean a lot to me.
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Post by Kerrie on Apr 14, 2005 18:26:42 GMT -5
For those of you who were interested. My father peacefully died in his own bed on Monday 4th April. I went to help Mum nurse him for his last few days. I do not like nursing. My father recognised me and was glad to see me, but he spent a lot of time talking incoherently because of the morphine. It was awful to see him on Sunday - he was like a living corpse. He lay there with his eyes and mouth partially open and it was hard to tell if he was awake or even if he was still alive. My mother was still able to go in and keep him company, but I couldn't bring myself to do it. When he was coherent he complained to me about how difficult dying was and how he didn't know how to do it. I didn't know what to say and chicken that I am just treated it as incoherent rambling.
After he died, I helped Mum ring the relevant people and remove his wedding ring. When the palliative care people asked about the equipment I insisted that it was all removed as quickly as possible. During the clean up Mum saw that her bedroom wall had been marked and so I offered to paint it as a feature wall. The next day I personally steam cleaned the carpets and finished painting the wall (not in that order!). When all the family gathered together they would all cry and I would leave: I couldn't stand it. I was so glad that my father had died and his suffering was over and that I was free to come and go as I liked. Do not get me wrong: I loved my father very, very much but as Spring's analysis of Forever made clear to me, I wanted my father to live in perfect health and happiness forever.
On Friday we had the funeral. I gave the eulogy. I did not cry. My father did not like crying when he was sick and before he was sick he played the clown of the family so that everyone laughed at him. In fact even when he was sick he was able to make the family laugh. My eulogy reflected this. Making people laugh in such circumstances was difficult in the extreme: I was only partially successful. I was able to incorporate some of Spring's Forever analysis into the eulogy: the concept that people live forever through written momentos (there had been talk within the family of making a written record of people's memories of Dad and the funny things he did) and through their DNA. Afterwards people said that they liked the eulogy (my neice wanted to know where I had got it!!!). However, the reality is that now that it is all over I feel incredibly sad and guilty. Maybe I should have sat around and cried even though that is not what I felt like doing. I did my best for my father both in during his life and after, but sometimes there is the persistent feeling that doing one's best is not enough. Spring has said that everone grieves differently and I was successfully able to remind myself of this all the time I was in Queensland (where my parents lived), but now I doubt. I don't know whether this feeling of guilt is just a stage of grieving or the result of my possibly inapporpriate actions. I suspect that I will never know and that it will always depend on my mood: when I am feeling depressed I will feel guilty and when I am feeling happy I will feel that I did the "right" thing. In the mean-time I keep taking my anti-depressants and wait for the mood to pass.
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Post by Lola m on Apr 14, 2005 19:43:40 GMT -5
For those of you who were interested. My father peacefully died in his own bed on Monday 4th April. I went to help Mum nurse him for his last few days. I do not like nursing. My father recognised me and was glad to see me, but he spent a lot of time talking incoherently because of the morphine. It was awful to see him on Sunday - he was like a living corpse. He lay there with his eyes and mouth partially open and it was hard to tell if he was awake or even if he was still alive. My mother was still able to go in and keep him company, but I couldn't bring myself to do it. When he was coherent he complained to me about how difficult dying was and how he didn't know how to do it. I didn't know what to say and chicken that I am just treated it as incoherent rambling. After he died, I helped Mum ring the relevant people and remove his wedding ring. When the palliative care people asked about the equipment I insisted that it was all removed as quickly as possible. During the clean up Mum saw that her bedroom wall had been marked and so I offered to paint it as a feature wall. The next day I personally steam cleaned the carpets and finished painting the wall (not in that order!). When all the family gathered together they would all cry and I would leave: I couldn't stand it. I was so glad that my father had died and his suffering was over and that I was free to come and go as I liked. Do not get me wrong: I loved my father very, very much but as Spring's analysis of Forever made clear to me, I wanted my father to live in perfect health and happiness forever. On Friday we had the funeral. I gave the eulogy. I did not cry. My father did not like crying when he was sick and before he was sick he played the clown of the family so that everyone laughed at him. In fact even when he was sick he was able to make the family laugh. My eulogy reflected this. Making people laugh in such circumstances was difficult in the extreme: I was only partially successful. I was able to incorporate some of Spring's Forever analysis into the eulogy: the concept that people live forever through written momentos (there had been talk within the family of making a written record of people's memories of Dad and the funny things he did) and through their DNA. Afterwards people said that they liked the eulogy (my neice wanted to know where I had got it!!!). However, the reality is that now that it is all over I feel incredibly sad and guilty. Maybe I should have sat around and cried even though that is not what I felt like doing. I did my best for my father both in during his life and after, but sometimes there is the persistent feeling that doing one's best is not enough. Spring has said that everone grieves differently and I was successfully able to remind myself of this all the time I was in Queensland (where my parents lived), but now I doubt. I don't know whether this feeling of guilt is just a stage of grieving or the result of my possibly inapporpriate actions. I suspect that I will never know and that it will always depend on my mood: when I am feeling depressed I will feel guilty and when I am feeling happy I will feel that I did the "right" thing. In the mean-time I keep taking my anti-depressants and wait for the mood to pass. Kerrie! First, please accept my sincere condolences on your loss. Now. The only "right" thing to do following the death of a loved one is something that comes from yourself - comes from your heart - comes from what you know of that person and is right for you to do at the time. Which is what you did. But your feelings are going to continue to be up and down and back and forth. That's natural. That's part of grieving and loss. A record of stories and memories of your father and his fun and laughter would be a wonderful way to have him live on. As well as a wonderful thing for you and all your family to have for yourselves. Again - all my sympathy. Lola
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Post by SpringSummers on Apr 14, 2005 20:25:23 GMT -5
Kerrie! First, please accept my sincere condolences on your loss. Now. The only "right" thing to do following the death of a loved one is something that comes from yourself - comes from your heart - comes from what you know of that person and is right for you to do at the time. Which is what you did. But your feelings are going to continue to be up and down and back and forth. That's natural. That's part of grieving and loss. A record of stories and memories of your father and his fun and laughter would be a wonderful way to have him live on. As well as a wonderful thing for you and all your family to have for yourselves. Again - all my sympathy. Lola Kerrie - let me echo Lola's words here: Your actions were genuine and they were caring - you were thoughtful about them, and they reflected what you believed was best. That's the right thing to do. On top of all that, you were of practical help to your mom, and you provided comfort to others by giving the eulogy. I did this at my mom's funeral last year , and I know that it is not an easy task. Like you, I did not cry, and I concentrated on positive things and remembered how funny my mom was (she had quite the sense of humor). Also like you, I spent some time second guessing myself, feeling that I should have done this or that differently during Mom's illness and after her death. It's normal to go through all kinds of feelings - guilt being a very common one - after a situation like this. Some of my guilt was around the very real feeling of relief I had at Mom's death, along with the grief. But this is normal too. You are way ahead of many in that you are paying attention to your feelings and acknowledging them and trying to deal with them. Be good to yourself. Give yourself some time. It definitely takes time. And please stop by here anytime you get the urge. Much love, Spring
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Post by Onjel on Apr 15, 2005 6:54:08 GMT -5
Kerrie - let me echo Lola's words here: Your actions were genuine and they were caring - you were thoughtful about them, and they reflected what you believed was best. That's the right thing to do. On top of all that, you were of practical help to your mom, and you provided comfort to others by giving the eulogy. I did this at my mom's funeral last year , and I know that it is not an easy task. Like you, I did not cry, and I concentrated on positive things and remembered how funny my mom was (she had quite the sense of humor). Also like you, I spent some time second guessing myself, feeling that I should have done this or that differently during Mom's illness and after her death. It's normal to go through all kinds of feelings - guilt being a very common one - after a situation like this. Some of my guilt was around the very real feeling of relief I had at Mom's death, along with the grief. But this is normal too. You are way ahead of many in that you are paying attention to your feelings and acknowledging them and trying to deal with them. Be good to yourself. Give yourself some time. It definitely takes time. And please stop by here anytime you get the urge. Much love, Spring Kerrie: Reading your post I was so touched that I want to reinforce what Spring and Lola said. They said it much better than I ever could. What is right is what comes from within. Your heart told you to remember the good and funny times with your father and to focus on that during the eulogy. Sometimes we get caught up in how we think others expect us to react and if we don't conform to that notion we feel a whole panoply of negative emotions. You loved your father and the fact that you remembered him to people the way he would have wanted is a demonstration of that love. The book of memories is a great idea! I will have to remember that, since I am an only child with no children of my own. I offer my deepest condolences for you and your family. Hang in there, it will get better.
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Post by Queen E on Apr 15, 2005 17:23:36 GMT -5
For those of you who were interested. My father peacefully died in his own bed on Monday 4th April. I went to help Mum nurse him for his last few days. I do not like nursing. My father recognised me and was glad to see me, but he spent a lot of time talking incoherently because of the morphine. It was awful to see him on Sunday - he was like a living corpse. He lay there with his eyes and mouth partially open and it was hard to tell if he was awake or even if he was still alive. My mother was still able to go in and keep him company, but I couldn't bring myself to do it. When he was coherent he complained to me about how difficult dying was and how he didn't know how to do it. I didn't know what to say and chicken that I am just treated it as incoherent rambling. After he died, I helped Mum ring the relevant people and remove his wedding ring. When the palliative care people asked about the equipment I insisted that it was all removed as quickly as possible. During the clean up Mum saw that her bedroom wall had been marked and so I offered to paint it as a feature wall. The next day I personally steam cleaned the carpets and finished painting the wall (not in that order!). When all the family gathered together they would all cry and I would leave: I couldn't stand it. I was so glad that my father had died and his suffering was over and that I was free to come and go as I liked. Do not get me wrong: I loved my father very, very much but as Spring's analysis of Forever made clear to me, I wanted my father to live in perfect health and happiness forever. On Friday we had the funeral. I gave the eulogy. I did not cry. My father did not like crying when he was sick and before he was sick he played the clown of the family so that everyone laughed at him. In fact even when he was sick he was able to make the family laugh. My eulogy reflected this. Making people laugh in such circumstances was difficult in the extreme: I was only partially successful. I was able to incorporate some of Spring's Forever analysis into the eulogy: the concept that people live forever through written momentos (there had been talk within the family of making a written record of people's memories of Dad and the funny things he did) and through their DNA. Afterwards people said that they liked the eulogy (my neice wanted to know where I had got it!!!). However, the reality is that now that it is all over I feel incredibly sad and guilty. Maybe I should have sat around and cried even though that is not what I felt like doing. I did my best for my father both in during his life and after, but sometimes there is the persistent feeling that doing one's best is not enough. Spring has said that everone grieves differently and I was successfully able to remind myself of this all the time I was in Queensland (where my parents lived), but now I doubt. I don't know whether this feeling of guilt is just a stage of grieving or the result of my possibly inapporpriate actions. I suspect that I will never know and that it will always depend on my mood: when I am feeling depressed I will feel guilty and when I am feeling happy I will feel that I did the "right" thing. In the mean-time I keep taking my anti-depressants and wait for the mood to pass. Oh, god, Kerrie, I am so sorry. I can only speak from my own experience, but I don't believe that there is a "right" way to grieve. You honored (and continue to honor) your father with your fidelity to what was essentially him (making people laugh) as well as with your continuing insight and intelligence. What you said you said seems to underline this, and I think he would have been proud. Please let me know if you need anything.
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