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Medical Forum / Diseases and Disorders / Alzheimer's / March 2004Surgery? It's a tumor
Hello, again. I would greatly appreciate everyone's opinion. My 79 yr. old mom w/ AD is in the hospital with severe diarhea. Turns out she has a tumor in her intestine where it meets the colon. It's the size of a tennis ball & Dr. doesn't know if it's malignant. Everything that goes into her mouth, comes out water. She'd already experienced diarhea for 2 weeks, before her week stay now, at the hospital. She was in the process of constant med changes, & the neurological nurse practitioner thought, initially, that was the cause. Then anti-biotics were prescribed, with side effects of diarhea. It wasn't until the immodium did not work anymore, that I took her to the hospital. Her diarhea has been constant for 7 days now. The tests they had to run, also cause diarhea. The surgery will also cause diarhea for an unknown amount of time. The recovery from surgery will also be painful. She has removed 5 I.V.'s now as it's uncomfortable for her. The Dr. asks her if she's in any pain and she says no. He then asks if she has diarhea and she says no. Prior, my mom no longer receives joy in her life. She can't do anything anymore without assistance. She won't even try to participate in anything, either. It's difficult to interpret what she's talking about, because she can't find the words at all or the right words to use. T.V. scares her. She doesn't like food & hardly ate. (probably from the tumor), but who knows if it's the AD. Mom has said, many times, "I'm in hell" "Take me home with you, Jesus". Her heart & lungs are strong. If we do the surgery, are we being selfish? We don't want to lose her. Are we just keeping her alive for ourselves. If we don't do the surgery, are we cutting her life short? She might be able to live a long time, if she recovers from the surgery. But what quality of life does she have to look forward to? Eventually, lying in a bed in a vegetable state, not being able to walk or talk from the AD. Will her AD decline even more after this toll on her, probably 90 pounds now, little body. She was 100 lbs when I brought her in. Which way to die is less cruel? Are we supposed to decide this for her? I stay with her at the hospital, but I should be able to check your posts Saturday night. Please, I look forward to your opinions & experiences. Thank you, Sonja Sonja, if you can determine that she really is not in any pain, I would not have any surgery. Anesthesia is very bad for AD patients; it takes a long time for them to recover from it, if they do. Since she has no good life to look forward to, what would it gain to have her live a long time more? But you will have to make the decision; none of us can do it for you. Will keep you in my prayers. Gwen  Signature============================================================= A man's character is like a fence. It cannot be strengthened by whitewash. ============================================================= | Hello, again. | I would greatly appreciate everyone's opinion. My 79 yr. old mom w/ AD [quoted text clipped - 33 lines] | Thank you, | Sonja >Hello, again. >I would greatly appreciate everyone's opinion. My 79 yr. old mom w/ AD >is in the hospital with severe diarhea. Turns out she has a tumor in >her intestine where it meets the colon. It's the size of a tennis ball ... >Prior, my mom no longer receives joy in her life. She can't do anything >anymore without assistance. She won't even try to participate in [quoted text clipped - 6 lines] >selfish? We don't want to lose her. Are we just keeping her alive for >ourselves. If we don't do the surgery, are we cutting her life short? No - it's the disease that's cutting it short, not you. >She might be able to live a long time, if she recovers from the surgery. At her age, and with the AD, that's a big IF. Patients with AD can't tell the nursing staff when things are botherng them, or even say exactly WHAT is the problem. >But what quality of life does she have to look forward to? Eventually, >lying in a bed in a vegetable state, not being able to walk or talk from >the AD. Will her AD decline even more after this toll on her, probably >90 pounds now, little body. She was 100 lbs when I brought her in. >Which way to die is less cruel? There are not many ways to die that are attractive - but there are ways of being kept alive that are worse. >Are we supposed to decide this for her? It's hard - but, yes you are. I had to make the same decision for my wife a year ago. Her cancer had metastasized - since she was in the last stages of AD we decided to let her die as peacefully as possible, rather than drag out a battle she could not win. So, Sonja, it rather depends on the stage of your Mom's AD. If she's close to the end stages, the operation won't be giving her much. The anesthesia for the operation will almost certainly aggravate her AD - and she may never recover even to her present level. She will need an IV after the op and she will not even be able to understand WHY she is being made to suffer. And, of course, barring a miracle, the AD will inevitably continue to get worse. When you're deciding, the only thing to remember is: do what will be best _for_your_mother_. If it helps, ask what *you* would want if you were in her position. Anything else is irrelevant. I think it all depends on the stage of your mom's AD and also if the tumor is malignant. If the tumor isn't malignant, removing it will definitely set back your mom's AD for a while, but might help her physical wellbeing and quality of life. Many older people won't talk at all about bowel or incontinence problems, so your mom may have had symptoms for a long time and just chosen to ignore or not mention them. If, and this is a big if, the tumor is not malignant and after removal her bowel symtoms are gone and her quality of life improves, she might have a better attitude despite the AD. My 77 YO MIL with pronounced AD had a burst appendix and major emergency surgery about 16 months ago. While after the emergency surgery the hospital almost killed her by treating her for a heart attack when she actually had heartburn (the hospital cut off her pepcid) she did slowly get better. The social workers and nurses thought she was going to die, but she slowly improved and after 3 months of no appetite she slowly began recovering. Now she doesn't remember a thing about the hospital or surgery, but for the most part is now as happy with life as any AD person can be. Just by looking at her or talking with her, you'd never know how close she came to dying 16 months ago. s2d > Hello, again. > I would greatly appreciate everyone's opinion. My 79 yr. old mom w/ AD [quoted text clipped - 33 lines] > Thank you, > Sonja > Prior, my mom no longer receives joy in her life. She can't do anything > anymore without assistance. She won't even try to participate in [quoted text clipped - 3 lines] > tumor), but who knows if it's the AD. Mom has said, many times, "I'm in > hell" "Take me home with you, Jesus". are you listening? > Her heart & lungs are strong. If we do the surgery, are we being > selfish? if it's malignant, probably yes. and anesthesia will set her back a lot as far a cognition & memory goes. > We don't want to lose her. Are we just keeping her alive for > ourselves. If we don't do the surgery, are we cutting her life short? no, but the cancer might. and palliative care (pain relief only) to keep her comfortable would let her die without suffering. > She might be able to live a long time, if she recovers from the surgery. > But what quality of life does she have to look forward to? Not much, as you said. > Which > way to die is less cruel? Are we supposed to decide this for her? yes, you have to, since she can't. but she HAS expressed the opionion that she's ready to go. why would you want to keep her here to be a vegetable? ask for a biopsy. if the tumor is malignant, call hospice to arrange for palliative care. fyi, the first sign that got my dad to the doc to have his colon cancer diagnosed was diarrhea that wouldn't quit. Thank you all for sharing your experience with me. I will share them with my family. I think we're trying to come to terms with denying her the surgery. We have to explore every possibility. We were finally able to get some answers from another internal medicine Dr. today. He's called Hospice to come meet with us. Unfortunately, their coming on the one day I can't be there. My sister & Dad will have to fill me in. She underwent the stress test this morning and passed with flying colors, but the surgeon said he would not recommend surgery for her because of many factors. Her age, her stage of AD, along with the numerous complications just from surgery. He said there is no hurry for our family to make a decision. The other surgeon said, if it was his mom, he'd have it done. We forgot to ask him, if his mom has AD. I will keep you posted. Thank you for your support. Sonja > I will keep you posted. please do! > Thank you for your support. that's what we're here for. hospice will also be a great support for your entire family. > if it's malignant, probably yes. and anesthesia will set her > back a lot as far a cognition & memory goes. I have a friend who has gone into nursing as a second career. She's done very well with it and I'm happy for her, but the problem is, now she knows everything about medicine. When I mentioned how much faster my fil went downhill after having anesthesia, she oddly became vehement on the subject and insisted that it's been proven in some studies that anesthesia does *not* have an affect on AD patients. She was really irate, not like her. But that's another story. Me, I believe what I see with my own two eyes and what other people dealing with it have reported. I'm sure it's been discussed to death here. I can google to see, but can someone maybe give me what this group has had to say about it, just real quick, not a long post. nancy >> if it's malignant, probably yes. and anesthesia will set her >> back a lot as far a cognition & memory goes. [quoted text clipped - 6 lines] >that it's been proven in some studies that anesthesia does *not* >have an affect on AD patients. . . Nancy, after my wife had anesthesia (for a BC lumpectomy) she went instantly from being mildly confused to being outright disconnected from reality. Doctors could find no physical cause for her sudden mental collapse, and it took an extra week in hospital to calm her down enough to return home. She never regained the level of thinking she had before the operation. That's my experience - but I'm still ready to believe that SOME people are not severely affected by anesthesia. . . > On Mon, 23 Feb 2004 10:39:19 -0500, Nancy Young > >I have a friend who has gone into nursing as a second career. She's > >done very well with it and I'm happy for her, but the problem is, [quoted text clipped - 11 lines] > return home. > She never regained the level of thinking she had before the operation. Thank you so much for your reply, at this point it's moot in my situation, but I'm still curious about the subject. Sorry about your wife. Believe me, if we had known about the possible effects, we would have passed on the pacemaker. > That's my experience - but I'm still ready to believe that > SOME people are not severely affected by anesthesia. . . Exactly, she was all heated about some study, I'm thinking, how do I know the conditions and how they actually followed up? Because I know what I saw. At any rate, I'm not collecting data to use on my friend, rest assured, I have no desire to bring up that subject again. (laugh) Thanks again. nancy > > On Mon, 23 Feb 2004 10:39:19 -0500, Nancy Young > [quoted text clipped - 29 lines] > > nancy Hi Nancy, Not just Glenfiddich, but MANY people have reported here over the last few years that general anesthesia put their loved one over the edge into a far greater decline, and that they never quite regained the ground they lost. Your friend is wrong. Plain and simple. If she is so stubborn as to get angry about something she really doesn't know about, she is not worth discussing it with. There is nothing so awful as someone who THINKS they know something when so many people here have reported this phenomenon. I am sure it has to be documented in some book somewhere. She probably got her information from doctors, who make lots of money on surgeries. Therefore her information source was tainted by money motive. If she really wanted to know she could get the information easily enough from someone who has nothing to gain from it, like the people here who have all reported this problem. SignatureEvelyn (To reply to me personally, remove sox) > "Nancy Young" <qwerty@mail.monmouth.com> wrote in message > > Thank you so much for your reply, at this point it's moot in my > > situation, but I'm still curious about the subject. Sorry about [quoted text clipped - 9 lines] > > my friend, rest assured, I have no desire to bring up that subject > > again. (laugh) Thanks again. > Not just Glenfiddich, but MANY people have reported here over the last few > years that general anesthesia put their loved one over the edge into a far > greater decline, and that they never quite regained the ground they lost. That was for sure my observation. It was all downhill from there, fast. He was never the same as when he went in. > Your friend is wrong. Plain and simple. If she is so stubborn as to get > angry about something she really doesn't know about, she is not worth > discussing it with. There is nothing so awful as someone who THINKS they > know something when so many people here have reported this phenomenon. She has undergone a sea change, personality wise, over the last year or so. She was never like this. I generally don't hang out with people who would hiss at me, Nancy, this is my PROFESSION. Wow, lighten up, who are you and what have you done with my friend. But that's neither here nor there. At any rate, that's why I asked here, I knew you'd be the people who really knew the answer. No studies, but experience. > She probably got her information from doctors, who make lots of money on > surgeries. Therefore her information source was tainted by money motive. Interesting point. Who chooses what studies for her to present? Perhaps they leave out the ones where it was proven the people declined. > If she really wanted to know she could get the information easily enough > from someone who has nothing to gain from it, like the people here who have > all reported this problem. Would be a very good idea for a nurse specializing in elder care. Thanks for your note. Makes me feel better after getting yelled at. (smile) nancy Nancy, Count us in as having a LO deteriorate from anesthesia. My FIL went from ambulatory (well, except for the newly broken hip), verbal, continent, and still recognizing family members part of the time to incontinent, non-verbal, unable to swallow and no longer lucid at all. He developed aspiration pneumonia and died a few days later. So I'll bet that either the subjects were hand picked for their good result, or your friend is remembering the exact opposite from what the study said (something I would occasionally do in Law School). The brain reads accurately but the meaning of the words gets flipped. Happened when I was tired, with lots of jargon to read. SignatureAdelle > She has undergone a sea change, personality wise, over the last year > or so. She was never like this. I generally don't hang out with > people who would hiss at me, Nancy, this is my PROFESSION. Wow, > lighten up, who are you and what have you done with my friend. But > that's neither here nor there. Nancy, I just finished reading several of the replies to your post, and I think that you certainly have enough anecdotal information to print these replies up and send them as a package to your friend (including this one, as I don't intend to go lightly about it). The problem with her is that just because she has chosen nursing as a profession, she thinks she knows everything medical about every condition under the sun. A prime example of the old adage..... "a LITTLE knowledge is a dangerous thing"..... The problem with Alzheimer patients and general anesthesia is WELL known, and just because she doesn't know it doesn't make it not so. All her attitude proves, is that she isn't a very good nurse at all. A good nurse would realize that different conditions (not to mention different individuals) may have different reactions to various kinds of medication. At the very least, she could have reserved judgement, asked around, and gotten her information straight, rather than jumping all over you about it. Regards, SignatureEvelyn (To reply to me personally, remove sox) All of your posts have helped us come to the conclusion that we made the correct decision to bring mom home today with the help of Hospice. She's sleeping soundly in my bed right now! Thank you for your input. You all were very helpful. Warmest regards, Sonja & Family Sonja, you made a very wise decision. Best wishes on you and Hospice taking care of her and keeping her comfortable. Gwen Signature============================================================= A man's character is like a fence. It cannot be strengthened by whitewash. ============================================================= | All of your posts have helped us come to the conclusion that we made the | correct decision to bring mom home today with the help of Hospice. | She's sleeping soundly in my bed right now! Thank you for your input. | You all were very helpful. | Warmest regards, | Sonja & Family Sonja, I haven't faced the decision you have, but I think you have made a very loving and wise one. Please keep us posted on how she and all of you are doing ... we care. Songbird > All of your posts have helped us come to the conclusion that we made the > correct decision to bring mom home today with the help of Hospice. > She's sleeping soundly in my bed right now! Thank you for your input. > You all were very helpful. > Warmest regards, > Sonja & Family I know how hard it is to make that decision. You feel like you are playing God. You care so much, but you are second guessing yourself at the same time. Before my father died, we had indications he had a cancer going on. We did not even want to put him through the tests it would have involved to diagnose the cancer. We decided to just go on to hospice and keep him comfortable. What your are doing for her is out of LOVE! You are doing the right thing. For everything there is a season...... - Mike, Friendswood, Texas > All of your posts have helped us come to the conclusion that we made the > correct decision to bring mom home today with the help of Hospice. > She's sleeping soundly in my bed right now! Thank you for your input. > You all were very helpful. > Warmest regards, > Sonja & Family > "Nancy Young" <qwerty@mail.monmouth.com> wrote in message > > She has undergone a sea change, personality wise, over the last year > > or so. She was never like this. I generally don't hang out with [quoted text clipped - 8 lines] > up and send them as a package to your friend (including this one, as I don't > intend to go lightly about it). I really don't want to call her on it. It's upsetting that she's changed so much, we were best of friends for a couple of decades, now it's as if I don't know her. Not only does she have a rare form of Crohn's, she was rear ended by a dump truck and is in pain in her back and neck at all times. Seems I can't say anything without her snapping at me and arguing, maybe it's the pain meds. > The problem with her is that just because she has chosen nursing as a > profession, she thinks she knows everything medical about every condition > under the sun. A prime example of the old adage..... "a LITTLE knowledge > is a dangerous thing"..... Actually, this isn't the first time I've seen that phenomenon. My best friend through school decided to go into nursing, by the time she was done, I didn't know anything and she knew everything. She even argued with me that my tetanus shot most certainly did not hurt the next day, like, I don't even know when my arm hurts. So when this one went from computer programming into nursing, my first thought was ... uh oh. > The problem with Alzheimer patients and general anesthesia is WELL known, > and just because she doesn't know it doesn't make it not so. That's really why I asked, I saw in this thread that a couple of people mentioned it, so I thought, maybe you all can tell me if my info was really out of date and wrong, or if it's true. I know what I saw. What everyone who responded here saw in real life, not in some study. > All her > attitude proves, is that she isn't a very good nurse at all. A good nurse [quoted text clipped - 3 lines] > At the very least, she could have reserved judgement, asked around, and > gotten her information straight, rather than jumping all over you about it. I think somehow her ego is wrapped up in this, she gave some symposium on the subject (don't ask, I don't know how or where or why, she was spitting nails, I didn't press it. Needless to say.) But, yeah, the old friend would have said, that's not true, there are studies that show blah blah blah, and I would have said, well, my fil blah blah blah. That would have been the end of it. I really want to thank everyone who responded, you all made me feel better about the whole thing. nancy > Not only does she have a rare form > of Crohn's, she was rear ended by a dump truck and is in pain in her > back and neck at all times. Seems I can't say anything without her > snapping at me and arguing, maybe it's the pain meds. It's more likely that the pain meds aren't working very well, but if she took enough to really work, she would be too groggy to function at all. Hi Nancy, Very late responding here but don't you think it would be dangerous to future patients of your friend to not correct her. You can probably get the same info from the Washington list by Geri Hall who is a well respected expert in AD. Maybe just leave the material lying around for her to see. You know like you were doing some research. I'd hate to see someone trust her for a minor procedure and have them decline markedly like my Mom did when she had her gall bladder taken out. SignatureMare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > > "Nancy Young" <qwerty@mail.monmouth.com> wrote in message > [quoted text clipped - 60 lines] > > nancy My GP told me not to have anything done about Grayson's heart, because any procedure would cause further confusion that would not be overcome. And any procedure for his heart would have used anesthesia. Gwen Signature============================================================= A man's character is like a fence. It cannot be strengthened by whitewash. ============================================================= | > > On Mon, 23 Feb 2004 10:39:19 -0500, Nancy Young | > [quoted text clipped - 48 lines] | from someone who has nothing to gain from it, like the people here who have | all reported this problem. I'm with you. My MIL broke her hip the first time (a few months prior to her diagnosis), she went completely loopy from the anesthetic. Prior to the break, she'd been a little forgetful, but she was doing quite well. She was paying her bills on time, living on her own, keeping her home and herself clean, getting to appointments and visits on time, driving, - going about her life in a very normal way, no overt problems at all. So, she breaks her hip, goes into the hospital for surgery to put in pins, and she's totally out of her head ga-ga afterwards. Not making any sense, very confused, didn't know where she was or why she was there - to the point that a social worker came to speak to us, and refused to believe that prior to the surgery my MIL had been managing her own affairs reasonably competently. She accused us of being in denial and that they wouldn't release my MIL to go back to her own home - that she needed immediate placement in a care facility! My MIL then went to a rehab place for three weeks of therapy, and she very slowly started to come around, but she was still very, very seriously impaired -and it wasn't from painkillers - all she was having was tylenol. She would totally forget when visitors came (she'd say no one had been to see her, when clearly there were flowers, gifts, etc. from that days visitors), couldn't track her meds (i.e. couldn't understand a chart with the days across the top and the times down the side), couldn't remember where the dining hall was. It was very shocking to us at the time, because it was so sudden and radical a change in her - it was like someone jumping from early stage AD to middle to later stage AD overnight, and then slowly, slowly coming back. Once she was home, she did continue to regain ground, but never came quite up to where she'd been prior to the break - and I am absolutely and positively sure it was the anesthetic that did it. She went a week between the break and the surgery and she was fine mentally during that time - so it wasn't the break itself. It wasn't until they did the surgery that she got so confused. Mary G. Video Event <VideoEvent@webtv.net> is alleged to have said: > Hello, again. > I would greatly appreciate everyone's opinion. My 79 yr. old mom w/ AD [quoted text clipped - 31 lines] > posts Saturday night. Please, I look forward to your opinions & > experiences. At the end of King Lear, when Lear has lost everything and falls down in a heap, the bystanders hurry to help him, but one says: Vex not his ghost: O, let him pass! he hates him much That would upon the rack of this tough world Stretch him out longer. Shakespeare, "King Lear" If the image of being stretched on a rack seems to fit, I would not let them operate. "I'm in hell" sounds like it to me. Sometimes the kindest thing to do is let people go, even if we're not ready yet, and to just be with them to the end, and not flinch from that. Most people in our culture (in all cultures?) don't just flinch from death, they run out of the room at the first hint of trouble. You've probably adjusted to the everyday misery you have with her disease but aren't ready for the last stage. Other people have mentioned hospice. They can help you get ready, as well as taking care of her. You say "we," so you're not alone in this. That's good. Take care of each other. SignatureJo Ann Malina, make spamthis best to find my address Would that life were like the shadow cast by a wall or a tree, but it is like the shadow of a bird in flight. -- The Talmud > At the end of King Lear, when Lear has lost everything and falls down > in a heap, the bystanders hurry to help him, but one says: [quoted text clipped - 3 lines] > Stretch him out longer. > Shakespeare, "King Lear" thank you for the citation. once again, the bard has words to fit the situation. |
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