Chris in VA Posted June 19, 2012 Share Posted June 19, 2012 Just curious-- They can do a brain scan and positively diag Alzheimers now. Would you want to know you have it? Quote Link to comment Share on other sites More sharing options...
meggie Posted June 19, 2012 Share Posted June 19, 2012 i would Quote Link to comment Share on other sites More sharing options...
LBS Posted June 19, 2012 Share Posted June 19, 2012 Oh, yes. It would have been so good to really know, with my sweet Grandma. I'd want to know if it were for me or any other loved one. Quote Link to comment Share on other sites More sharing options...
Remudamom Posted June 19, 2012 Share Posted June 19, 2012 Yep Quote Link to comment Share on other sites More sharing options...
MindyD Posted June 19, 2012 Share Posted June 19, 2012 Can you link the story? Is it a test to diagnose people after they show symptoms or to determine if someone will develop alz in the future. Either way, I'd want to know. Unfortunately my family has a very strong history of it. My dad and uncles know it's coming their way. I'm still holding out that it I won't have it. Up until my generation, my family seemed to only have boys so I don't know if it's linked to just the males in my family or not. It's a slim hope I hold onto. Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted June 19, 2012 Author Share Posted June 19, 2012 Can you link the story? Is it a test to diagnose people after they show symptoms or to determine if someone will develop alz in the future. Either way, I'd want to know. Unfortunately my family has a very strong history of it. My dad and uncles know it's coming their way. I'm still holding out that it I won't have it. Up until my generation, my family seemed to only have boys so I don't know if it's linked to just the males in my family or not. It's a slim hope I hold onto. I saw it on ABC Nightly News, so it's prolly at their site, but I don't know. :grouphug: Quote Link to comment Share on other sites More sharing options...
The Girls' Mom Posted June 19, 2012 Share Posted June 19, 2012 Absolutely. There are medications that can slow the progression, especially if taken early. Quote Link to comment Share on other sites More sharing options...
zimom Posted June 19, 2012 Share Posted June 19, 2012 http://online.wsj.com/article/SB10001424052702304587704577332090297872490.html I found this test/scan recently approved. Quote Link to comment Share on other sites More sharing options...
clearycrew Posted June 19, 2012 Share Posted June 19, 2012 I don't think I would want to know. Watching my great-grandmother die of it was horrible. To know that I had that in my future might be too much for me to handle... Quote Link to comment Share on other sites More sharing options...
Danestress Posted June 19, 2012 Share Posted June 19, 2012 The "I wouldn't want to know" mentality presupposes that there is nothing beneficial that would come out of a positive diagnosis. But in fact there are a number of medical advantages of knowing, and there are also tremendous advantages for the family in terms of coping and planning. I can't tell you the discussions my family had - sad, angry, confused, anxious discussions about "what is wrong with Dad and what are we going to do about it." A positive diagnosis would have let us skip all of that and get right to the "coping" part. The possible disadvantage, of course, is that some people would choose to end their lives once they have that knowledge. Quote Link to comment Share on other sites More sharing options...
Night Elf Posted June 19, 2012 Share Posted June 19, 2012 I'm not sure to be perfectly honest. One one hand, knowing would allow me to understand what is happening. Although we should always live our lives like each moment is the last, I think it's not realistic. Many people, and I'm definitely one, spend lots of time worrying about things and just getting by day after day. It's hard to feel joyous and alive when bad things happen. But knowing could possibly change my outlook and allow me to stop worrying and to cherish each moment I have. Unfortunately, the opposite could happen. I would know i was just handed a death sentence and I might be paralyzed with fear and be unable to enjoy the rest of my time. On the other hand, I imagine that not knowing would also be worrisome. As things start going wrong medically, we would all be scared and wondering what was happening. Yet I might have a better chance at living my life to the fullest if I wasn't paralyzed with fear of the future of a fatal disease or disorder (not sure what it is actually). Hmm.. I don't really know. Quote Link to comment Share on other sites More sharing options...
Ipsey Posted June 19, 2012 Share Posted June 19, 2012 That's tough. For me, yes. I watched my neighbor, 63 years old, retire as a nurse to care for her stricken parents full-time for 2 years before they both died. It was hell to watch her. She was in hell watching her mother's constant terror and the very strange visions she had. Her father was violent and would often wander. My grandfather had it, and . . .well, I don't know if I might carry it too. I do know that I would want to make provisions. I wouldn't want to suffer. I would try to time things so I could take myself to Switzerland where I could procure physician-assisted suicide, honestly before I got too, too sick. I know this probably isn't a popular thing to say, but For Me, it would definitely be something I'd want as an option. I wouldn't want to live with late-stage Alzheimers. Quote Link to comment Share on other sites More sharing options...
Lisbeth Posted June 19, 2012 Share Posted June 19, 2012 Yes, I would want to know. I have never been one to "poo skittles," I prefer knowing the good and bad in order to prepare. I have very little normalcy bias. Quote Link to comment Share on other sites More sharing options...
Georgiana Daniels Posted June 19, 2012 Share Posted June 19, 2012 Yes, I would in order to prepare. Quote Link to comment Share on other sites More sharing options...
Mama_Rana Posted June 19, 2012 Share Posted June 19, 2012 This has been on my mind recently [and I hadn't seen the news]. My g-ma died of complications from Alzheimer's. My mom is TERRIFIED that she's coming down with it, and honestly, there have been some moments I've wondered about her.... But... They still can't do much about it if you do have it. Would knowing help? I dunno, maybe it would. Maybe earlier treatments would be more effective? :/ It really is a hard question. ETA: Sorry, I started this hours ago, and forgot to hit "submit". :tongue_smilie: Quote Link to comment Share on other sites More sharing options...
The Girls' Mom Posted June 19, 2012 Share Posted June 19, 2012 I wanted to add...it runs in my dh's family so strongly, that it is almost assumed that it will show up. Knowing that has allowed preparations to be made, long before there are symptoms. Even as young as dh is, we have had the very serious discussions on how things will be handled IF he ends up with it. We've also talked about his father. His parents have taken steps to protect their estate financially because of the knowledge that long term care is very likely. Knowing for sure...that would just be one more step in being able to cope with it. Having seen family members die from it, it would have been priceless to be able to treat it in time to put off the onset. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted June 19, 2012 Share Posted June 19, 2012 Just curious--They can do a brain scan and positively diag Alzheimers now. Would you want to know you have it? Yup...so I can remember all the good things now and count my blessings before the hard drive crashes... Quote Link to comment Share on other sites More sharing options...
Impish Posted June 19, 2012 Share Posted June 19, 2012 Absolutely. There are medications that can slow the progression, especially if taken early. :iagree: Quote Link to comment Share on other sites More sharing options...
nono Posted June 20, 2012 Share Posted June 20, 2012 Well, no, because I already am on the dementia train ride. My Mom has it. My Grandmother had it. I remember it starting in my Mom at 47. Guess how old I am? I'm not afraid of it though. My Mom still knows us, even the newer folks added to the family in the last 10 years. So, I know I've got dementia coming. Alz...well, no need to add that to the mix. If it comes, so be it, but I don't need to know now. It might be overwhelming. Quote Link to comment Share on other sites More sharing options...
justLisa Posted June 20, 2012 Share Posted June 20, 2012 The "I wouldn't want to know" mentality presupposes that there is nothing beneficial that would come out of a positive diagnosis. But in fact there are a number of medical advantages of knowing, and there are also tremendous advantages for the family in terms of coping and planning. I can't tell you the discussions my family had - sad, angry, confused, anxious discussions about "what is wrong with Dad and what are we going to do about it." A positive diagnosis would have let us skip all of that and get right to the "coping" part. The possible disadvantage, of course, is that some people would choose to end their lives once they have that knowledge. I was thinking the same things Quote Link to comment Share on other sites More sharing options...
PeacefulChaos Posted June 20, 2012 Share Posted June 20, 2012 Hmm... I actually think I probably would. Unlike the tests one can get to supposedly tell if they have whatever that will turn into cancer (I'm not thinking straight at the moment, but I know it's something breast cancer related), which would only leave one waiting for the other shoe to drop, so to speak... this test is for people who already have some symptoms, right? So it would just be a positive diagnosis. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted June 20, 2012 Share Posted June 20, 2012 I think I would want it if I were showing signs of memory decline. However, it also has downsides of false diagnosis: "Some 20% of cognitively healthy older adults have been found during autopsies to have large quantities of amyloid in the brain, according to Denise Park, director of the Center for Vital Longevity at the University of Texas at Dallas." So it's not the kind of thing that you'd want to run out and get for "peace of mind" because you could be one of those 20%! I'm glad they are progressing in research, though. We've needed this to begin to try to intervene at an earlier time. It would in a way be awful to know while you still had most of your faculties. By the time my grandmother was diagnosed, she didn't know any better. On the other hand, it could help planning and help your family adjust. Quote Link to comment Share on other sites More sharing options...
justamouse Posted June 20, 2012 Share Posted June 20, 2012 Hell yes. I'd start drastic preventative measures immediately. You'd see me walking around with one of those beer hats? Only it'd have coconut oil in it. :001_smile: Quote Link to comment Share on other sites More sharing options...
dancer67 Posted June 20, 2012 Share Posted June 20, 2012 (edited) No. Because what if the test is wrong? You are worrying over something that you were told that would happen. And nothing ever did. And people do not die of Alzheimers. They die from complications of it(falling, not being properly cared for, accidents). Why worry about something you can't change anyways? My father had a cerebral aneurysm at 48. He lived. I can be screened if I want to. It isn't being forced on me. But why would I want to know that I have a brain aneurysm, that may or may not rupture? I can't control it.Sure, I could have surgery to clip it. But the surgery is very, very risky. And if I had an aneurysm, again it may not ever do anything at all. Just like you cannot control Alzheimers. The medications that are out now for this, is more dangerous then the disease itself. Keep your mind and body active. And if it happens, there is nothing you can do to prevent it anyways. JMO. Edited June 20, 2012 by dancer67 Quote Link to comment Share on other sites More sharing options...
LibraryLover Posted June 20, 2012 Share Posted June 20, 2012 (edited) Yes. I would want to know so I could make plans for my future. Edited June 20, 2012 by LibraryLover Quote Link to comment Share on other sites More sharing options...
nova147 Posted June 20, 2012 Share Posted June 20, 2012 For myself? No. But for my family, absolutely. I don't want to know how it will end. I certainly don't want to ponder forgetting everything and everyone. I guess that knowledge would be useful when symptoms started to interfere with daily life, but knowing before that would just make me crazier than I already am. But . . . knowing what you're dealing with is very important when you become someone's caregiver. My best friend's dad was just diagnosed with Alzheimer's. She has spent the past year trying to convince herself that nothing was wrong and/or her brother that something was wrong. (Her dad lives with her.) Now, they are on the same page and are figuring out how to help their dad. I guess I could get the test and give the results to DH. :) Quote Link to comment Share on other sites More sharing options...
TeenagerMom Posted June 20, 2012 Share Posted June 20, 2012 No. Because what if the test is wrong? You are worrying over something that you were told that would happen. And nothing ever did. And people do not die of Alzheimers. They die from complications of it(falling, not being properly cared for, accidents). Why worry about something you can't change anyways? My father had a cerebral aneurysm at 48. He lived. I can be screened if I want to. It isn't being forced on me. But why would I want to know that I have a brain aneurysm, that may or may not rupture? I can't control it.Sure, I could have surgery to clip it. But the surgery is very, very risky. And if I had an aneurysm, again it may not ever do anything at all. Just like you cannot control Alzheimers. The medications that are out now for this, is more dangerous then the disease itself. Keep your mind and body active. And if it happens, there is nothing you can do to prevent it anyways. JMO. You absolutely can die from Alzheimer's Disease.:001_huh: It is a fatal condition that erodes your brain cells and takes away your ability to function as a person (including the ability to eat). I work in Geri Psych and deal with Alzheimer's patients every day. I would absolutely want to know. It breaks my heart watching families having to make decisions they weren't prepared for and I want my wishes known and planned out in advance. Quote Link to comment Share on other sites More sharing options...
jennsmile Posted June 20, 2012 Share Posted June 20, 2012 (edited) My MIL is in the early stages. She is on a patch to slow the process. She worries over it and I think is somewhat embarrassed. Her children I think are in denial as she still lives independently (in a mother in law apt at BIL's house) and drives and cooks. At some point I realize this will change but nobody acknowledges or talks or is planning for it. I am just the DIL. :glare: We do have a great relationship but I am the lone voice suggesting change so at the point I have given up mentioning making changes to living arrangements ect. Yes I possibly would want to know but then I would want social workers to help the family make plans and implement them. I think a support group would also be helpful. But currently giving the Dx to somebody at the beginning has only accomplished my MIL being on anxiety meds and afraid to live her life jic things get worse. And that I think is a tragedy. She probably could have gone off on a mission for 18 months and been fine but she was afraid her disease would progress rapidly. It hasn't but she was overly cautious. Edited June 20, 2012 by jennsmile Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted June 20, 2012 Share Posted June 20, 2012 I don't know, isn't alzheimer tendency hereditary? I know early onset is. BUt what about regular onset? Lots of people here are talking about family members. No one in either my family or my dh's family has had it so I don't think it would be useful. Quote Link to comment Share on other sites More sharing options...
MyThreeSons Posted June 20, 2012 Share Posted June 20, 2012 Just like you cannot control Alzheimers. The medications that are out now for this, is more dangerous then the disease itself. This is a bold statement. What is your basis for making this claim? Quote Link to comment Share on other sites More sharing options...
The Girls' Mom Posted June 20, 2012 Share Posted June 20, 2012 No. Because what if the test is wrong? You are worrying over something that you were told that would happen. And nothing ever did. And people do not die of Alzheimers. They die from complications of it(falling, not being properly cared for, accidents). Sorry, but this is incorrect. My dh's aunt is currently dying of Alzheimers. Her brain has deteriorated to the point of seizure activity and a catatonic state. Her brain is shutting down. Alzheimers destroys brain cells, which eventually (even with proper care) leads to death. Dh's aunt has been very lovingly cared for by her husband with the aid of hospice. She will still die from Alzheimers. Just like her father did. Quote Link to comment Share on other sites More sharing options...
bkpan Posted June 20, 2012 Share Posted June 20, 2012 This is a bold statement. What is your basis for making this claim? I can back up her statement that the meds for alzheimers can be dangerous. My background is gerontology mental health, but I also have personal experience. My father was given a dx of dementia (probable alzheimers) about 4 yrs ago and placed on aricept and nimenda. He QUICKLY spiraled into confused and psychotic behavior. My stepmom placed him in the hospital where the resident psychiatrist along with his neurologist confirmed the dementia, took away his independence, and told her to make plans for permanent placement in a nursing facility. I drove up there as quickly as I could and insisted that they take him off of the meds. In all of my experience, I had never seen a dementia pt. decline that quickly. Within days he was back to himself. Now, at 84yo, he has no dementia symptoms, drives, is fiercely independent and is writing another book. I firmly believe that without the background I have he would have lost the remainder of his life. This may not be the average rx to these meds, but when it is a loved one or yourself, you will not give a **** about the averages. Please be careful with these meds. In fact, be careful for ANY tx that is given to the elderly. Their rx to intervention are not always the same as to younger and stronger patients. No, I do not think that I would want that test. Kim Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 20, 2012 Share Posted June 20, 2012 I can back up her statement that the meds for alzheimers can be dangerous. My background is gerontology mental health, but I also have personal experience. My father was given a dx of dementia (probable alzheimers) about 4 yrs ago and placed on aricept and nimenda. He QUICKLY spiraled into confused and psychotic behavior. My stepmom placed him in the hospital where the resident psychiatrist along with his neurologist confirmed the dementia, took away his independence, and told her to make plans for permanent placement in a nursing facility. I drove up there as quickly as I could and insisted that they take him off of the meds. In all of my experience, I had never seen a dementia pt. decline that quickly. Within days he was back to himself. Now, at 84yo, he has no dementia symptoms, drives, is fiercely independent and is writing another book. I firmly believe that without the background I have he would have lost the remainder of his life. This may not be the average rx to these meds, but when it is a loved one or yourself, you will not give a **** about the averages. Please be careful with these meds. In fact, be careful for ANY tx that is given to the elderly. Their rx to intervention are not always the same as to younger and stronger patients. No, I do not think that I would want that test. Kim Yes, but for every instance you speak of there are many many more where the meds helped. With any med you should watch for side effects in the early days. Aricept helped my grandmother tremendously, and let her get to know her grandson before she was too far gone. If my mom hadn't pushed for the diagnosis and treatment that wouldn't have happened. (mom is a geriatrics nurse). Quote Link to comment Share on other sites More sharing options...
justamouse Posted June 20, 2012 Share Posted June 20, 2012 (edited) No. Because what if the test is wrong? You are worrying over something that you were told that would happen. And nothing ever did. And people do not die of Alzheimers. They die from complications of it(falling, not being properly cared for, accidents).. Actually you do die from it. You eventually forget how to eat, and how to breathe. It's tragic and horrible and bittersweet (because they're suffering so you pray for it to end). My FIL died from it, and I am militant about my Dh's health and well being because I know there's a possibility he could develop it. And my FIL died so young-diagnosed so young, I don't want to lose my Dh in 15 years. (funnily enough, FILs father lived to 96, healthy as an ox and sharp as a tack.) I DO think there's a diabetes, gut/liver, Alz tie. They do call it diabetes of the brain--and my FILS blood sugars were borderline diabetic, and he was overweight. (I forget the #s but if you do have diabetes, the chance is higher you'll have Alz). I actually do think the meds are horrible. I watched my FIL take them and suffer wretched side effects-but he had to, they gave him some clarity. I forget what med they gave him at the hospital, but we blame it for sending him into his death spiral. At Christmas he was functioning well (MIL took impeccable care of him), he went into the hospital they gave him something (I'd have to ask my MIL) and he was gone by Valentine's Day. It was after that shot that he never went home again. And it wasn't gradual, he went from eating and showering to not able to walk in one day. It's horrible. Utterly horrible. Edited June 20, 2012 by justamouse can't spell-autocorrect is wrecking my shorthand Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 20, 2012 Share Posted June 20, 2012 Sorry, but this is incorrect. My dh's aunt is currently dying of Alzheimers. Her brain has deteriorated to the point of seizure activity and a catatonic state. Her brain is shutting down. Alzheimers destroys brain cells, which eventually (even with proper care) leads to death. Dh's aunt has been very lovingly cared for by her husband with the aid of hospice. She will still die from Alzheimers. Just like her father did. Correct, my Grandmother died of it. My mom cared for her at home as long as possible (mom is a geriatrics nurse and quit her job to care for her), but eventually she needed more medical support, and eventually slipped into a coma and died, despite GREAT care. (my aunt is also a geriatrics nurse, and worked at the facility my grandmother went to.) Quote Link to comment Share on other sites More sharing options...
bkpan Posted June 20, 2012 Share Posted June 20, 2012 Yes, but for every instance you speak of there are many many more where the meds helped. With any med you should watch for side effects in the early days. Aricept helped my grandmother tremendously, and let her get to know her grandson before she was too far gone. If my mom hadn't pushed for the diagnosis and treatment that wouldn't have happened. (mom is a geriatrics nurse). True. As I said, you have to be extremely careful with these medications. BTW, I should clarify quickly because it is relative. His decline was over a 4-5 month period. Some may not associate the meds with that rate of decline, but I had never witnessed a pt. with some short-term memory issues (which he had had his whole life), decline to a need for constant care in that length of time. But his doctors were convinced that it was the progression of the disease. Again, please be vigilant with the elderly. Quote Link to comment Share on other sites More sharing options...
TeenagerMom Posted June 20, 2012 Share Posted June 20, 2012 True. As I said, you have to be extremely careful with these medications. BTW, I should clarify quickly because it is relative. His decline was over a 4-5 month period. Some may not associate the meds with that rate of decline, but I had never witnessed a pt. with some short-term memory issues (which he had had his whole life), decline to a need for constant care in that length of time. But his doctors were convinced that it was the progression of the disease. Again, please be vigilant with the elderly. In the one year that I have worked Geri Psych, I have actually seen a rapid decline happen in many of our patients, including those who have been taken off ALL medications other than something like insulin that they MUST have. I have seen them discharged as confused patients and readmitted a few months later and have lost their ability to walk, eat on their own, etc. The disease just gets to a point that they have a rapid decline and go. Many things, the death of a spouse, a move, a new health problem, etc can contribute to that decline. We test every patient to make sure it isn't a health issue like a UTI or other illness causing the dementia symptoms. UTI can cause dementia like symptoms in elderly patients. My own grandmother went from living on her own to passing away from Alzheimer's, ina matter of 2 months. It wasn't the medications because she had been on them for 4 plus years. Quote Link to comment Share on other sites More sharing options...
UnsinkableKristen Posted June 20, 2012 Share Posted June 20, 2012 Yes, I would. Forewarned is forearmed. Quote Link to comment Share on other sites More sharing options...
Danestress Posted June 20, 2012 Share Posted June 20, 2012 you can start to educate yourself about the disease, and your family can do the same. You've made a few false statements about Alzheimer's and that's understandable. There is a lot of misinformation out there, and it's such an unpleasant disease that people really are reluctant to "go there." But education is the beginning of coping. Quote Link to comment Share on other sites More sharing options...
plansrme Posted June 20, 2012 Share Posted June 20, 2012 Absolutely, and I would want to know as early as possible so that I can get my affairs in order and ensure that Alzheimer's is not what kills me. Terri Quote Link to comment Share on other sites More sharing options...
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