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Medical Forum / Diseases and Disorders / Alzheimer's / July 2007What do patients know about their condition?
My Mom believed that she had AD long before anyone else in the family believed it. Years went by before we saw any visible symptoms, but apparently she was aware of them. My mother-in-law on the other hand never acknowledged that anything was wrong. She pooh-poohed her husband's insistence that something was wrong, had to be pushed into seeing a doctor, didn't see any reason to take Aricept or other drugs, and insisted that she was fine. There were enormous personality differences between the two of them. My Mom was very social, very interested in politics, and keenly aware of what people thought. My MIL was relatively reticent and quiet, often sitting passively at a dinner table and not participating in the conversation. Perhaps those traits have something to do with it? Or maybe they have nothing at all to do with it. I think my Mom was more concerned about her health, more likely to imagine things were wrong with her (which is one reason why the rest of the family thought her AD premonitions were just personal fear). My MIL on the other hand was relatively unconcerned about herself. Her focus was her husband and children. Maybe that had something to do with it? Or maybe not. My Mom had watched a friend of hers develop AD some years before. That experience undoubtedly sensitized her to the problem, and terrified her too. My MIL on the other hand had not, to my knowledge, ever known anyone with the disease. Maybe that was a factor? I'm curious to hear the experiences of others regarding what their loved ones know about their condition. I'm curious to hear any speculations you may have about why they were or were not aware of what was happening to them. Thanks. Alan Alan, my husband knew about tires. He had worked for Goodyear, Goodrich and an Atlanta Tire & Retread Company. He didn't go to college but one year, but could read a P&L, make projections about the business and supervised all the salesmen throughout all his territory up and down the east coast. But don't talk to him about anything medical or most anything else except the tire business. Telling him he had AD would have meant absolutely nothing to him. When he would complain about not being able to do things or unable to remember things, I would remind him that he had suffered a stroke so his brain didn't work as well as it should. That satisfied him for a while until it came up again. He never knew he had Alzheimers, but I did. Even before the doctor mentioned it to me, I already was prepared to deal with it. Our local family doctor put him on Aricept (5 mg) and said next time he would up it to 10. However, I took him to the VA Clinic and they waited a while before putting him on the 10 mg. His medicine from the VA was free, but anything I got locally I had to pay for. I had already taken him to Mayo in Jacksonville and their diagnosis was the same. Every time we went to Mayo, the doctor emphasized that I should take care of myself first. Most caregivers don't realize how important that is. Gwen > My Mom believed that she had AD long before anyone else in the > family believed it. Years went by before we saw any visible [quoted text clipped - 35 lines] > > Alan <snip> > I'm curious to hear the experiences of others regarding what > their loved ones know about their condition. I'm curious to hear > any speculations you may have about why they were or were not > aware of what was happening to them. The Dowager (my mother) was apparently unaware of having the disease until I demanded that my sister come down from Boston to visit her and tell me whether I was imagining things. She said I wasn't, so I took the Dowager to see her medic, who gave her some tests and said... Well, you can guess what he said. He also notified the State Department of Motor Vehicles, who were the ones who told the Dowager she could no longer drive herself. She apparently missed the connection, and blamed the State - which was fine by me! The most heartbreaking phrase I heard during the two or three years after that was, "...back when I still had a mind..." Blessed be, Baird I would think anyone would know if they can't remember anything....Sometimes i have to write everything down.....But I have had it 6 or 7 years now and forget a lot but.....I have Diabetes also and that helps my mind.... I have had Alzhiemers for 6 or 7 years....I also have Diabetes....the pills I take for the diabetes are protecting me from the Alzhiemers....altho I am forgetful and need to write everything down. I know I'm forgetful....if i need to remember i write it down....My Diabetes Pill is protecting me from the alzhiemers.....But I still forget.... > My Mom believed that she had AD long before anyone else in the > family believed it. Years went by before we saw any visible [quoted text clipped - 35 lines] > > Alan Alan my mother in law never really grasped the fact she had alzheimers. In the very beginning she was very depressed and cried all the time, stopped going out of her house, didn't bathe or clean anymore, and it, among other things, was why we began to get worried about her. When we took her for testing, she never really asked what the diagnosis was, although she went through quite a lot of tests, which entailed us driving down to her house two hours down and back each time. This alone would be odd enough to cause any normal person to inquire. After we got her on medication, there were no end of problems with that. She couldn't remember if she took her pill that day or not. Sometimes she would take more, and made herself quite ill on several occasions. The only choice was to take her here to live with us. She never quite realized exactly what was wrong with her. One day she looked around her, (and this was several years later) we had sold her house, cleaned it out, and took some of her favorite things to keep for her here. She noticed a small red glass vase from her home, and remarked that a merchant marine sailor had sent her that from his travels. Suddenly she said "something is wrong"... and I said "YOU BET something is wrong, you have alzheimers disease!" She seemed relieved and said "Oh is that what it is?" I said "yes, you live with us now and we are taking care of you." She said "Oh that is good, then"... It was the most astonishing moment, and I am sure others will also relate that occasionally some lucid moment of realization will occur as a complete surprise.... like a little gift. Moments later... all was as usual and the moment was forgotten and she was repeating this or that nonsense question like she did a hundred times every day again. It was like a window to the real person for just that moment, and there were several of those throughout the course of her illness. But that is the long answer. The short one is no.... other than that moment, she never really understood or connected with what was wrong with her, or what it meant.  SignatureBest Regards, Evelyn ALan inquired - > I'm curious to hear the experiences of others regarding what > their loved ones know about their condition. I'm curious to hear > any speculations you may have about why they were or were not > aware of what was happening to them. My dad had a TIA, witnessed by my mother, in early 2001. With hindsight, we think there were many, many more - similar to minute blips on a radar screen both before and after that incident. The incidents were not fully understood by him or my mother. After that incident, he stopped driving. He described the periodic disorientation to us several times, but I don't think he ever truly understood what the import was. The disorientation was sufficiently distressing to him that he was willing to stay away from the driver's seat of a car. The vascular dementia which followed the TIA's wreaked havoc with a lot in his life. Financially he was an accident waiting to happen. Mary Gordon has talked about the lack of ability to understand sequences and planning, and she could have been talking about my dad. He was never particularly intuitive or sensitive to others' moods, hopes, desires, feelings, plans. After the dementia took over, this part of his personality was amplified and became even more maddening. At times, he could still be delightful. the other residents of his apartment complex offered him real friendship and congenial companionship. He was included in a weekly bridge group - all bright eyed little old ladies - until he could no longer follow the game. My sister lived and worked nearby and talked to him daily, visited 2-3 times a week and began to manage his affairs for him. But - he was incontinent and internal bleeding amplified this problem. He became increasingly befuddled with his medications ( which really were minimal) until the clinic staff at the complex took over managing his dosage. Eventually, he did begin to drive again. This scared the bejesus out of me, and I cannot begin to tell you how relieved I was when he failed a driver's license renewal exam. Near the end of his life, we were dumbfounded when the complex staff would not cooperate with us to move him to a more supervised area. The other residents were complicit with this, and this one piece made sense to me. "If Arthur is losing it and can no longer manage on his own, what does the future hold for me? I am not going to say anything." Eventually, his system could not keep up with the loss of blood, he fell, called for help, went off to the emergency room. then to the nursing home facility in the complex, back to the hospital with pneumonia where he drifted away for the last time, out of the energy he needed to keep going. I think he DID know that the one most serious TIA made quite a few changes. I don't think he ever truly understood the full magnitude of what those changes signified. SignatureA R Pickett aka Woodstock "Sometimes the facts threaten the truth" Amos Oz, prize winning Israeli author Read my book reviews at: http://www.booksnbytes.com/reviews/_idx_ws_all_byauth.html Now blogging! http://www.journalscape.com/woodstock/ Remove lower case "e" to respond Woodstock, I was very blessed that one morning on the way to town, Grayson pulled off to the side of the road and said. "You'd better drive". We exchanged places and he never drove again. How easy could it get! Gwen > ALan inquired - > I'm curious to hear the experiences of others regarding > what [quoted text clipped - 48 lines] > changes. I don't think he ever truly understood the full magnitude of what > those changes signified. > I'm curious to hear the experiences of others regarding what > their loved ones know about their condition. I'm curious to hear > any speculations you may have about why they were or were not > aware of what was happening to them. My grandfather was basically aware that there were a lot of people in his life that he didn't recognize but he wasn't concerned as to why. Telling he had AD was an exercise in frustration. My MIL was intensely aware after her stroke that something was VERY wrong. We'd recognized the vagueness and constant retelling of stories in the months prior to that for what it was. In the first few months after the stroke, she knew what the diagnosis was and could tell anyone who asked what it was and what she was taking to slow down the progression. At six months after, she didn't know anymore, and by eleven months after, she was having trouble articulating her thoughts at all. Beth SignatureDon't go around saying the world owes you a living. The world owes you nothing. It was here first. ~Mark Twain My MIL knew something was up - she just couldn't figure out quite what it was. She knew strange things were happening to her - that she was having trouble with her bills, that she kept losing things, that she was showing up for appointments on the wrong day or time (or worse, on the weekend when the office was closed). She was very stressed out about it in her quiet way. She knew she was having trouble with every day things that she'd done thousands of times with no difficulty (running the VCR, finding shows on TV etc.) She thought she was going "crazy" - which was a huge big deal for her, since she'd had a sister die in a mental institution from tertiary syphilis back in the 1940's (HUGE big skeleton in her wealthy establishment family). She was really upset when the dementia specialist she was sent to was a psychiatrist. We practically had to tie her up and drag her (my husband had to go with her, or she wouldn't have gone, and she wrote all kinds of plaintive complaints about how mean we were all over the edges of her calendar). She thought questions about her feelings or family background and personal situation were impertinent and intrusive - so she was just mortified by the process. When she got a diagnosis, I don't know if she could really grasp what it meant. I do know she was relieved to not be "nuts", which seems odd now - I'd rather have a curable case of the blues than AD any day. She had it written on little pieces of paper in her purse, and she'd circle articles about AD or cut them out of the newspaper for a while. I suspect that she was at the stage when her mind could almost get around the idea of Alzheimer's but not quite, but she did try. It just kept slipping away, like trying to grab a wisp of down out of the air. I'm sure the doctors never told her the full import of the diagnosis - i.e. it would progress relentlessly, reduce her to a shell, and then kill her. Not much point of that. M. Chornic Progressive Dementia (CPD), vulgarly named alzheimer, begans in oscillating modality, or in other words, enter and go out in terms of hours or days, In this period they recognize their state, but no that their death?s desire (the key of the alzheimer process), or more exactly, their attention fixation on the death?s desire go to their brain dissintegration by means of the recognition senses mechanism?s blockade. Luis Sanchez, CDP Center, Argentine Thank you all for your responses. I get the idea that there is a limited window of opportunity for patients to understand their condition. Some patients are aware of their problem during that window. Others, perhaps most, are not, or are in denial about it. At some point the window closes and the patient can no longer understand anything as complex as the nature of his condition. Alan > Thank you all for your responses. > [quoted text clipped - 7 lines] > > Alan Yes, that is a good way of putting it. SignatureBest Regards, Evelyn > > Thank you all for your responses. > [quoted text clipped - 14 lines] > > Evelyn Chronic progressive dementia, named vulgarly alzheimer, begans in an oscillation modality, in which the persons enter and go out the proces in terms of hours or days. During this initial phase, they often rocognize theirs situation, but in the second step, when they fixed the attention in the death`s desire, began with the sense recognition mechanism failures and in general never more adquire a conscience of their state. In the cases we recover it, they are unable to remember nothing of the period they are in te dementia state. Luis Maria > My Mom believed that she had AD long before anyone else in the > family believed it. Years went by before we saw any visible [quoted text clipped - 35 lines] > > Alan My mother got herself to the doctor to get a diagnosis. She was forgetting appointments and there must of been other symptoms. At the time she was in another part of the country from me. I admit I was in denial because she sounded fine on the phone. Several months later she even managed to drive her car from Florida to Indiana. She called me and told me that she getting things in order and asked if I wanted her house in Florida. I said no that I really didn't want it because I already had a lake house. I figured she would put one of my brother's name on it. I was the one who didn't get it-- not her. They say hindsight is 20/20; How true. For several months she was aware of what was going on. I wish I could have been more help. At the time she was married but her husband(my father had passed away years earlier), I'll try to be kind here, wasn't too bright. This was in October of '93 by the time she got back to Indiana for the summer in July '94 I could see the difference. She stayed an extra month in Florida because her doctor had some special treatments for her. I don't know what they were. Still she would apologize for her mental health. I think because this dementia was so slow and still is, denial was easy. It took me many years to see the impairment change her life. She still played bridge, drove her car, paid her bills, I know it sounds unbelievable but it's true. Even now in 2007 she will try to remember something and say "A mind is a terrible thing to lose." She's like a 4 year old now but always remembers the people in her life. Thru this group, I've come to the conclusion that she has vascular dementia. Science knows so much about body but the brain still eludes us......June > ... She still played bridge, drove her car, paid her bills, I know it sounds > unbelievable but it's true. Even now in 2007 she will try to remember something and say > "A mind is a terrible thing to lose." She's like a 4 year old now but always remembers > the people in her life. ... I think that some patients are fighters. They know something terrible is happening to them. Their ability to struggle against it declines over time. But they still struggle as long as they can, retaining every scrap of knowledge, memory and ability that they can and working hard to keep on top of things. They do their very best to hang on to their humanity. It sounds like your Mom was and is one of those. My hat is off to her. Alan >> ... She still played bridge, drove her car, paid her bills, I know it >> sounds unbelievable but it's true. Even now in 2007 she will try to [quoted text clipped - 13 lines] > > Alan Mine too. I wonder if those who are very active/intelligent/involved in life have a slower progression into the illness than others? My mother in law was beautiful and lucky as well as nervy and plucky in many ways, but I would never have called her intelligent. Some of that was clearly a lack of education, but I also think some of it had to do with the scarlet fever that left her nearly deaf in one ear from childhood on. In remembering back, I recall she showed some signs that something somewhere was not as it should have been, years before we even had a clue she was ill. From what I have learned reading on this newsgroup, some seem to take a nosedive into the illness and progress amazingly quickly. Others like June's mom, take a long time for it to affect them. As others have said here before, the brain is an interesting organ that we know too little about. SignatureBest Regards, Evelyn > I wonder if those who are very active/intelligent/involved in life have > a slower progression into the illness than others? Everything I've ever read says that the best way to help avoid the effects of AD on the long term is to be very mentally, as well as physically, active. People who do crossword puzzles and balance their checkbooks and other brain-intensive activities provide stimulation, and the brain is more likely to be able to continue to make new neural connections. It also helps to be physically active, just as it helps with most diseases. There's no guarantee, obviously, but it can't hurt. If you have "logician" activities that you enjoy, you might well be saving yourself. Beth SignatureDon't go around saying the world owes you a living. The world owes you nothing. It was here first. ~Mark Twain >> I wonder if those who are very active/intelligent/involved in life have a slower >> progression into the illness than others? [quoted text clipped - 5 lines] > neural connections. It also helps to be physically active, just as it helps with most > diseases. I have seen a number of speculations about why people who fight the disease can resist its effects for longer. Some theories are: 1. They think harder. If a person without AD can solve a problem with 50% of his attention in 10 seconds. One with AD may still be able to solve the problem if he puts in 75 or 100% of his attention, or works at it for 20 or 30 seconds. Such a person can retain a lot of capabilities. 2. They use other parts of the brain. People who work their brains hard develop a lot of capability. They can sometimes subsitute one way of working on a problem for another and still solve it. 3. Repair damage. Maybe people can make new neural connections, as Beth suggests, to "wire around" the damaged neurons in the brain and keep going. Alan I think part of "denial" has to do with some very deep seated and powerful cultural beliefs - most of the major religions treat personality as of a piece with the soul - as though who you are is something totally apart from the body and the meat computer between your ears - and as though you have total control of yourself, your emotions, your actions through pure will. We have a lot of trouble with mental illness and brain damage for that reason - we don't want to believe that someone can act in bizarre and uncharacteristic ways, and not have it be their "fault". M. > I think part of "denial" has to do with some very deep seated and > powerful cultural beliefs - most of the major religions treat [quoted text clipped - 8 lines] > > M. Very well said! During my fathers run-away episode and the following days of anger he just kept telling us he did NOT have memory problems and that he knew we all just though he was "crazy" and he'd point to his head doing that circular index finger point ... I guess the universal sign for crazy. He'd had a very slow progressive memory loss up to this event and never really had a reason to deny his condition. Now he is ever so slowly accepting this and it helps that he can blame the fall for what is happening. He does seem to recognize the loss of memory and skill he always had. He doesn't even ask what the Aricept if for any more. Best regards - Barbara H I was really taken aback by the husband of a friend a few years back. My friend's mother had been recently widowed and was starting to do some quite strange things, suggestive of AD (the kind of things that make the hair on the back of your neck stand up if you've seen AD before up close and personal). I had a conversation with the husband, and he really had it in his head that his MIL needed to "snap out of it", that she was doing this on purpose for attention, that she wasn't trying hard enough to get her life together, that she needed a talking to, that she was being stubborn and difficult, or mean and rude etc. etc. In his mind, her personality was a fixed constant, and not a function of an intact and functioning brain dependent on good health and luck, and he didn't for a second think she might not be able to help her behaviour. It wasn't denial - I think he was just one of those people who really believe that we are somehow a thing apart from our biological wiring, so we must be accountable for everything we do and say. M >I was really taken aback by the husband of a friend a few years back. > My friend's mother had been recently widowed and was starting to do [quoted text clipped - 17 lines] > > M Hi Mary, That is exactly what my Aunt did with my Uncle. She would correct him all the time, and give him instructions that (of course) he couldn't remember. I tried to explain to her, but she just didn't get it. Another thing she didn't get, was when I tried to explain she needed to go to an elder law specialist attorney to set up some ways to protect their assets. She didn't do it........ until a crisis came up. Her husband fell for the umpteenth time, and she kept calling the police to come pick him up for her. They finally took him to a hospital and then to a nursing home. This is something she fought against, but they wouldn't release him to her at home anymore because of all the falling and constant calls to the police for help. When she realized how astronomically expensive a nursing home could be, her kids finally got smart and took her to an attorney to try and protect the assets. They are both gone now, but when I think back of the terrible ignorance about alzheimers disease that exists everywhere, it is so sad. Denial runs deep. SignatureBest Regards, Evelyn Evelyn wrote in part - > That is exactly what my Aunt did with my Uncle. She would correct him all > the time, and give him instructions that (of course) he couldn't remember. > I tried to explain to her, but she just didn't get it. My mother didn't get it either. Theirs was never a smooth, mutually supportive marriage, at least for the last 25 years they were together. The aftermath of his TIA's only made things worse. His lapses and "fog" (as she termed it) irritated her beyond belief, and she would rail at him, at me and my siblings. We tried repeatedly to prepare both of them for the changes we could see in the wind, and while we were successful in getting him into better living arrangements, we never made much headway in the financial side of things. He died in January, and we still are stumbling over the fallout from extremely short sighted planning and woefully poor legal advice. SignatureA R Pickett aka Woodstock "Sometimes the facts threaten the truth" Amos Oz, prize winning Israeli author Read my book reviews at: http://www.booksnbytes.com/reviews/_idx_ws_all_byauth.html Now blogging! http://www.journalscape.com/woodstock/ Remove lower case "e" to respond > Evelyn wrote in part - > That is exactly what my Aunt did with my Uncle. > She would correct him all [quoted text clipped - 13 lines] > He died in January, and we still are stumbling over the fallout from > extremely short sighted planning and woefully poor legal advice. Hi, A.R. What on earth IS it that makes people do that? Do they really think they are going to live forever? Or do they imagine that their death will be sweet and nearly instantaneous like in the movies? I don't get it, and I never will. There are few people who are so lucky as to die with no stress. My mother died that way, but it was a very rare thing, I am sure. My dad is in nearly complete denial about estate planning, and he goes into a rage if anyone mentions anything. I don't want to be in denial about my own mortality, and put my kids through such miseries, leaving chaos by my passing. I'd like to have everything in order, if I possibly can before things get dicey. SignatureBest Regards, Evelyn The way people can believe they won't ever suffer disability, illness or death is just mind boggling, isn't it. Like, we know we all are going to die, and the process of getting from live to dead is rarely both quick and pleasant....and we don't always get formal warning the process has begun, apart from age...which many people also choose to ignore. I work in an open concept office, and there were six work pods in a clump in my area. One of my "pod mates" was a project manager who was on contract, very capable, affable gentleman from England - who happened to be north of 75 years of age. We were all drinking coffee one day, and I was talking about the massive legal and financial mess created by my mother's death at 47 because she didn't have a will (she owned most of the assets of the family because my father had his own business, and there were two minor children - it took more than 2 years to resolve and involved government appointed executors and trustees - really dreadful - the government doesn't trust the surviving parent in intestate situations to look after the interests of the children). . Then John fesses up he doesn't have a will either. I was shocked - because he had a wife and a disabled son who lived with them. His reasoning was that everyone in his family lived to a great old age, and he assumed he would too, so he had lots of time. Everyone started arguing with him, and to no avail. In his head, there was no chance of accident, or random health event. He just figured sometime in his 90's, he'd get some warning and then he might get around to seeing to his legal situation. He was a very intelligent man, too, so go figure. Another thing that totally amazes me is how reluctant people are to seek proper legal advice about estate planning and wills because they fear the fees etc. Even though its all about protecting your loved ones from hardship, people will avoid getting expert advice - in my mind its a great investment. I remember reading that the average US family that seeks estate planning to deal with medicare/medicaid issues in a timely fashion saves $60,000. Pretty good return, I'd say. M. > The way people can believe they won't ever suffer disability, illness > or death is just mind boggling, isn't it. Like, we know we all are [quoted text clipped - 35 lines] > > M. My MIL didn't get her will made out until she was 92. She always said that she would just let everyone fight over what's left. Well one day she came down with the flu and was sick for a couple of weeks. Two of her daughters were contemplating what they would do if their mother passed away. Auction everything off and divide it among her living kids. Another daughter told her of the plans. When she recovered from the flu she went to a lawyer and made out her will. Cost her $10. She ended up out living one of the daughters and the lawyer. Her son (my husband) was executor of her will. He was amazed at how much money she had accumulated in her life. Another one of her daughters passed away while the will was being probated. Because she had a will, the money went to the children of her deceased children. This made everything easy. Someone would say, I don't think that we should do this or that but the will made everything clear and my husband would say this is what she wanted. His mother was an extremely strong woman and nobody argued with what she wanted......June PS ---- MIL lived to be 101 > What on earth IS it that makes people do that? Do they really think > they are going to live forever? Or do they imagine that their death > will be sweet and nearly instantaneous like in the movies? We're very lucky where my FIL is concerned. He is by nature a planner, and he's had trusts and a will (updated every other year) since before he married my MIL. The current joke is that he won't buy green bananas to have around the house, because he's concerned they will out-live him! He's actually in reasonable health for someone in their mid-80's, but he's very much aware of his own mortality. Beth SignatureDon't go around saying the world owes you a living. The world owes you nothing. It was here first. ~Mark Twain >> What on earth IS it that makes people do that? Do they really think >> they are going to live forever? Or do they imagine that their death will [quoted text clipped - 10 lines] > > Beth I hope you know how lucky you are. We should bottle it up and sell it for so many who are not aware of it. SignatureBest Regards, Evelyn > ... > I don't want to be in denial about my own mortality, and put my kids through > such miseries, leaving chaos by my passing. I'd like to have everything in > order, if I possibly can before things get dicey. > ... As you say, some people deal with fear of death by denial. Personally, I think there is some comfort in knowing that your affairs are in order and that the people you love will not suffer because of what you failed to do, but instead will benefit from what you left for them. It's certainly a more productive way to deal with the fear. Alan I had difficulty in properly snipping and interleaving Alan's post, so I took the liberty of doing it a little differently. I hope readers will be able to discern enough of Alan's original post to get some- thing out of this. Alan wrote; My Mom believed that she had AD long before anyone else in the family believed it. Years went by before we saw any visible symptoms, but apparently she was aware of them. Howard replied; Neither My wife nor myself had any idea in years past that she was experiencing the onset of Alzheimers. In retrospect, the symptoms were there, but neither of us had any experience from which to recognize the symptoms. Alan wrote; My Mom had watched a friend of hers develop AD some years before. That experience undoubtedly sensitized her to the problem, and terrified her too. My MIL on the other hand had not, to my knowledge, ever known anyone with the disease. Maybe that was a factor? Howard replied; Late in our marriage and long after the onset of Alzheimers, but still before either of us recognized the true nature of the beast, I watched from the sidelines as my best friend's wife began the severe decline from a highly active, very cognizant, even aggressive personality to a veritable vegetable. It was that observation that made it possible for me to recognize later on the symptoms in my own wife. Alan wrote; My Mom had watched a friend of hers develop AD some years before. That experience undoubtedly sensitized her to the problem, and terrified her too. My MIL on the other hand had not, to my knowledge, ever known anyone with the disease. Maybe that was a factor? I'm curious to hear the experiences of others regarding what their loved ones know about their condition. I'm curious to hear any speculations you may have about why they were or were not aware of what was happening to them. Howard replied; Had your Mom articulated to her family how or why she knew she knew she was experiencing the early stages of AD, it would have been fairly easy for you to understand and even observe for yourself. Had you known to look, you would have observed incidents that were totally out of character for your mother. Little things mostly. Things that would otherwise be totally ingnored in the normal course of things. Your mother sounds like an orderly person. Symptoms would be incidents of disorder (in her way of doing things). Simple things like putting her coffee cup away in the wrong place, or putting her car keys away with her jewelry. Absent knowledge to the contrary, the average person would just relegate such an incident to a fluke, a one time incident not to ever be repeated, and forget about it. Early on, such behavior might be evident to even a spouse so rarely that the symptoms are discounted as totally irrellevant. My wife is currently in a stage of advanced Alzheimers. I am fortunate in that she is not in absolute denial. Of course she does not want to believe she has the disease, but she does not actively resist treatment. For that I give thanks. SignatureBrick(Enforce the law first; change it later if necessary) Earlier on with this disease Dad would ask " what's wrong ? why can't I remember ?" When I told him that he had Alzheimers, he would get upset and depressed. He knew what the out come would be. Next time he asked, I told him that he had a stroke and the medicine would help. This did not upset him as much and it was easier on both of us. Have learned that taking the path of least resistance makes a smoother journey. Dad tried to teach me that years ago...guess I'm still learning from the old gentleman ;) > Earlier on with this disease Dad would ask " what's wrong ? why can't > I remember ?" When I told him that he had Alzheimers, he would get [quoted text clipped - 4 lines] > journey. Dad tried to teach me that years ago...guess I'm still > learning from the old gentleman ;) Yes, a very wise course of action. When my mother in law used to ask "when can I go home" from the nursing home, I told her that as soon as she got better we'd take her home. It never failed to placate her, it made her feel better in some way.... and I assure you that if by some miracle she COULD have gotten better, we would have done it. It didn't need mentioning that we knew she was never going to get better. It was far better to keep her happy and peaceful. SignatureBest Regards, Evelyn > Earlier on with this disease Dad would ask " what's wrong ? why can't > I remember ?" When I told him that he had Alzheimers, he would get [quoted text clipped - 4 lines] > journey. Dad tried to teach me that years ago...guess I'm still > learning from the old gentleman ;) My father absolutely denies any memory problems at all. However, in the past several weeks he has come to accept some things much better than I had hoped for, i.e. giving up his car. I think your approach of least resistance is also what made the difference for us. By selectively applying many suggestions from this group we have watched his hostile, angry behavior subside and he is settling into a comfortable routine for now. I know time is not our friend but I will take whatever amount I can get. I don't think he will ever admit or accept any dementia or AD diagnosis. However, he's okay with the brain injury from his fall and with his dx of a small stroke sometime in the past. His head injury is healing and I know that is helping. We go for a 2nd MRI on Monday. Also, he's in his second month of Aricept and I think it is helping him. I can't tell for sure because his stories from the past are being embelished with lots of new twists and turns. He's always been a wonderful storyteller and now, well you can imagine. :-) When I got to his house yesterday afternoon he was actually reading a book. I've not seen him pick up a book in over two years. I was amazed. Today when I got there he was sitting at his computer, had it booted up and was trying to type an e-mail to his grandson. He couldn't quite manage it but I think that he believes he succeeded. It's very sad to see him trying to do those things he loved so much and now can't master even the basics but it's also a bit encouraging to even see him trying again. He can still retrieve some of that information from somewhere in his brain just not enough to do what he wants to do. How much he understands about his condition, I don't know. But I sometimes suspect he knows exactly what is happening to him and I also suspect he thinks he can stop it by denying it. I think his generation had the "don't talk about it and maybe it will go away" attitude when times got rough. Best, Barbara H ... > Howard replied; > Had your Mom articulated to her family how or why she knew she knew [quoted text clipped - 11 lines] > might be evident to even a spouse so rarely that the symptoms are > discounted as totally irrellevant. A good observation. My Mom was an intensely social person who, until surprisingly late in the progression of her disease, was able to "cover" her confusion. That probably made her initial slow deterioration harder for our family to detect. However it is certainly true that I had no experience of these matters and must have missed many signals that would be quite clear to me today. Because my Mom was very aware of and concerned about what other people thought of her, she must have been in inner torment over how to talk about it. On the one hand she wanted us to know that all was not right. On the other hand, she refused to talk about specific symptoms. I don't think she could bear to tell someone that she was having trouble recognizing faces or recalling familiar events, or reading all the words in the newspaper. She got an actual diagnosis of Alzheimer's Disease from a specialist but never told my Dad or myself or my brother about it. It was about six years later when, talking to her general practice physician, he told my Dad and I that she had AD. We asked how he knew that for sure and he said the diagnosis from the specialist was right in her record. He didn't know that my Dad had never been told. The specialist did not do us a service by failing to contact my father and inform him of what was going on. Alan Alan wrote: > She got an actual diagnosis of Alzheimer's Disease from a > specialist but never told my Dad or myself or my brother [quoted text clipped - 6 lines] > The specialist did not do us a service by failing to contact > my father and inform him of what was going on. Mary responds: Oh Alan!! That kind of thing just drives me up the wall. I know there are privacy issues, but honestly!! The specialist knows that by the time a person is diagnosed, there are usually significant impairments (i.e. its interfering with daily life to the point where the person or those around them are noticing). The person may have damage sufficient to not really understand what they have been told, or what the full import is. Dementias are just not the same as other diseases - you need an intact brain if its left to you to decide who to tell. Its progressive, its incurable, its fatal - if a person has a spouse or family in their life, how can a physician NOT tell those on whom the burden of care will fall. Its completely irresponsible - after all not knowing will delay the family from learning about what they are up against, considering safety issues, financial planning etc. etc. It would be like having a patient involved in an out of town accident where they receive a serious brain injury, and not bothering to call the family to tell them the person was hurt - on the premise that the person is an adult and its up to them to deal with their own problem. Argh!! I'm so thankful we were dealing with an old fashioned family doctor (he was the doctor for all of us, including MIL). We still see him, and I just love the guy - he is extremely practical. He treats our family as a unit - he always asks about everyone when one goes in, he knows if one of us is not well, it impacts the well being of the rest, and he takes all that into consideration (i.e. he wants to know how we are all coping with stressful stuff, since it DOES impact health). I also love his matter of fact attitude towards impractical treatments (i.e. one of those silly regimes where there are such complicated instructions involving multiple drugs multiple times a day that successfully sticking to the treatment is almost a lost cause - doctors seem to be fond of these things particularly with small kids). When I told him my suspicions (I took him aside at an appointment I took her to), he acted on what I said immediately (went in and did a form of MMSE, and came right out in the hall ashen faced to tell me something was terribly wrong). We were involved right from the get-go, and thank god for that. She was certainly very self aware, but so terrified and confused that I doubt she would ever have been able to bring herself to ask a doctor if there was something wrong with her. Denial was her shield - just saying the words to an authority figure that she thought her mind was going would have been totally traumatic for her. I answer allexperts questions on AD, and I'm surprised how often the privacy thing rears its head in the US. In some ways, you'd think when it comes to AD, the doctors would be MORE worried about litigation from not telling than telling. It would be like leaving the driving issue to the person with AD rather than informing the license bureau. I would certainly be furious if a loved one had a preventable incident (like getting lost in winter or setting a fire) because the doctor had kept the dementia diagnosis from the family. M. Mary wrote in part > I answer allexperts questions on AD, and I'm surprised how often the > privacy thing rears its head in the US. My personal experience, and that of my sister surprised me, too. A few years ago, - some 3 years before my mother's death, and 8 years prior to my Dad's, they both cheerfully and willingly completed valid medical POA's. My sister who lived near them (the only of 5 kids who lived close at all) had copies, and provided them to every medical provider she was aware of. The problems began as my Dad's dementia increased, when he would make appointments, book the apartment complex van, and take off to see an MD, dentist, or what have you with no word to my sister. My sister would learn of this new medical person on the scene by a remark of my Dad's or perhaps lunch discussion among him and his cronies (she regularly dropped by his apartment house at lunch time for a visit and to enjoy the banter at his lunch table.) She would get in touch with the MD office, fax them the POA, request that any and all examinations, prescriptions, recommendations, referrals, be provided to her as well as to my dad. A distressingly frequent outcome was no contact from MD to her AT ALL, and a rather irritable, "here's comes that nosy daughter again" reaction from both MD and his staff. Calls to her cell phone with no attempt to reach her at work or at home. Calls to work or at home with similar lack of contact to the other phone numbers. She once requested a wheelchair to be available with the valet parking staff at the door of the rather large, extensive medical clinic building. They sent the wheelchair down, but when the valet called about 20 minutes before my dad's scheduled arrival, the MD staff said "sure, no problem, let another patient use it." My sister was left with my dad, by then VERY unsteady on his feet, wobbling down a long hallway after getting off the elevator. I guess my point in this comment is to agree that the "privacy thing" is not thoughtfully executed by far too many MD's and their staff. And in his final hospitalization, she had the same experience with the hospital staff and the MD assigned to monitor my Dad's care while he was a patient there. Both my mother and my dad were more than willing to share medical information with my sister and have her be a full participant in their care. My mother remained fully lucid before her death, and was quite careful to keep my sister in the loop. My dad's dementia interfered with his awareness of her "need to know" at the time in his life when it was most crucial. SignatureA R Pickett aka Woodstock "Sometimes the facts threaten the truth" Amos Oz, prize winning Israeli author Read my book reviews at: http://www.booksnbytes.com/reviews/_idx_ws_all_byauth.html Now blogging! http://www.journalscape.com/woodstock/ Remove lower case "e" to respond > Mary wrote in part > I answer allexperts questions on AD, and I'm > surprised how often the [quoted text clipped - 44 lines] > his awareness of her "need to know" at the time in his life when it was > most crucial. Woodstock you have outlined the problem well. It is a fine line between protecting people who are losing their cognitive abilities, and helping caregivers and POA holders to look after their charges properly. I don't really know if there are any real solutions. Protecting an individuals privacy is an area that has always been given great credibility in this country. But when people start to need protecting themselves, it gives rise to a conflict that medical and other service providers haven't quite sorted out for themselves. SignatureBest Regards, Evelyn |
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