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Medical Forum / Diseases and Disorders / Alzheimer's / December 2005Advice - sufferer living alone UK
Alzheimer sufferer lives alone relying on neighbours, nearest 1/2 mile away. Used to have problems with anything technical before she was ill but now requires a new TV and some form of recording equipment plus digital radio and CD player. Money isn't the problem but getting none complicated equipment. Being near the sea the tides affect terrestial reception so satellite would appear the best option but FTA and not subscribing to SKY. Does anyone know of any suitable equipment in the UK or even a simplified remote control? On/off - radio/tv/cd - volume - channel change is all that's needed. - TIA Mick > Alzheimer sufferer lives alone relying on neighbours, nearest 1/2 mile > away. Used to have problems with anything technical before she was ill but [quoted text clipped - 7 lines] > On/off - radio/tv/cd - volume - channel change is all that's needed. - TIA > Mick You are joking right? 'the tides affect reception'? Jeez. I also susopect it wont matter how simple it is, the issue is, its new so its different to what she had before. I got my dada the simplest mobile phone you culd get, all he had to remember was to press one button to call home, and he couldn't manage even that. So even switching the set top box on will probably be a problem, and if it isnt now it will be within a few months. (and all the remotes I have seen are 'festooned' with buttons. But anyway, getting the right station is by far the least of her worries, living alone and relying on neighbours 1/2 mile away means she is sooner or later going to end up in *serious* trouble. Do social services know about her?  SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com >> Alzheimer sufferer lives alone relying on neighbours, nearest 1/2 mile >> away. Used to have problems with anything technical before she was ill [quoted text clipped - 21 lines] > or later going to end up in *serious* trouble. Do social services know > about her? Not joking about the tides - channels come and go due to reflected signals off the sea going in and out of phase with direct signal. I used to use 2 switcheable aerials set at different heights but now use fta satellite. She is not an old person (late 50's) and only slowly getting worse over the last few years. Small fairly secluded community who look after one another and she is looked in on a very regular basis. S services are aware but along with the locals think she will be better at home as long as possible. Thinking maybe get a universal remote for each piece of equipment, disable unused or unneeded keys and colour code the units. What do you think? >>> Alzheimer sufferer lives alone relying on neighbours, nearest 1/2 mile >>> away. Used to have problems with anything technical before she was ill [quoted text clipped - 33 lines] > unused or unneeded keys and colour code the units. > What do you think? Mick, Tumbleweed told you the way it really is. This person probably should not be alone anymore. If she is to the point where she can actually be diagnosed with the illness, there is probably enough impairment that a disaster could be just around the corner if she is left alone, no matter how often people look in on her. Shall I tell you how my mother in law burned the handles off all her pots? How she forgot soup on the top of the stove for several days and mold was growing all over the top of it, yet she thought she had "just" made it?.... and was starting to heat it up again to EAT.....? How she forgot how to turn the water faucet off? I know it sounds like having just exactly the right systems in place, the simplest of mechanical gadgets available, pills all labeled in neat little boxes, that it might just work, but I am telling you sincerely from the bottom of my heart, that it won't help much when a person who can no longer relate to a clock or a calendar, and being able to relate to clocks and calendars is one of the first things to "go". Sometimes the person may appear to be able to function alone in a home setting, but that is only to people who aren't really watching closely enough. How often is she bathing? My mother in law insisted that she bathed three times a week, but her tub had an inch of dust and dirt in the bottom of it, and it was being used as a broom closet. It was obvious no one had bathed there for a long, long time. One of the worst problems is being unable to learn anything new, no matter how simple it is. The second worst problem is the fact that this illness gets worse, and it gets worse faster than you might guess it would. We tried just exactly what you are doing, and it didn't work out for us. We had to take her to live with us, and in that scenario she did quite well for a couple of years more. I wish you luck in your endeavors, but I don't honestly think it is the right direction you should be investigating. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') >>>> Alzheimer sufferer lives alone relying on neighbours, nearest 1/2 mile >>>> away. Used to have problems with anything technical before she was ill [quoted text clipped - 71 lines] > I wish you luck in your endeavors, but I don't honestly think it is the > right direction you should be investigating. We have had experience with others but the s services have not suggested they need to act as yet. The next step of course is a home but she is still at the stage where this is dreaded by herself. Apart from short term emergency cover then she has no where else to go with no family cover. She seemed to start about 8 years ago and the progress has been slowly downhill but is now getting a little quicker though on a good day you wouldn't think there was anything wrong. She might only have months left at home but maybe a year or so with luck though I doubt it. Just want to give her as much comfort at home before she has to go Mick Mick > We have had experience with others but the s services have not suggested > they need to act as yet. The next step of course is a home but she is [quoted text clipped - 6 lines] > give her as much comfort at home before she has to go > Mick I understand that you mean to do the best by her, and my mother in law was the same way.... she wanted to stay in her home as long as possible. But she had no idea when it was already too long, and it was very hard making that move. At times my mother in law appeared perfectly fine too. She took her pills, forgot what day it was and that she'd taken them, so she'd take them all again. Then she would be sick and not know why. She would show up at the drugstore asking for a refill when she was supposed to have two more weeks to go on the last batch. We tried getting the next door neighbor to supervise the meds, and that didn't work either. She was a "grownup" and needed no "babysitter!" This was after we put the pills in all the neat little boxes so she knew just what to take and when. We tried leaving her notes.... calling to remind her, that didn't work either. Please watch this lady very carefully, she may seem like she is just fine some days, but then one time she will forget and leave the gas stove on, or forget how to turn the water faucet off. You don't want to wait until it gets to some critical situation and you get a tragic phone call that she got lost walking down to the road to get her mail or something. Trust me that it can happen very unexpectedly. I don't know if you have these places in the UK, but we have places called "Assisted Living" which is not a nursing home, but a place where someone can go before they get to that point, and they just need a little help and supervision in certain areas. I have an Aunt who is living in one right now, and she is enjoying herself immensely. She doesn't have Alzheimers disease, but she just can't maintain a home anymore. She doesn't have to clean, cook, or do anything difficult. They have social activities and she can go out for dinner with friends and family whenever she wants. She has her own little apartment there, and she enjoys the place a lot. Of course if the person gets to the point where they need more help, they go to a different kind of a facility, but in the meantime there is a lot more autonomy and less to worry about in an assisted living place. It is a lot easier to make the right move at the right time, than to wait for a disaster and try and figure out what to do them. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') one of the things I've read that made a lot of sense to me was that in some cases it's kinder to have the move made sooner rather than later ... i.e. while the person still has some social skills and is able to make connections with others - it sounds like, in this case, that might well be worth considering. >> We have had experience with others but the s services have not suggested >> they need to act as yet. The next step of course is a home but she is [quoted text clipped - 46 lines] > It is a lot easier to make the right move at the right time, than to wait > for a disaster and try and figure out what to do them. Mick, You are getting excellent advice. from this group. She should not be alone The drop in neighbors cannot be there to see her at her when she is at her low points. Most of us can tell you AD patients can seem perfecly fine at times, but not all the time If you mean to help her and every one feels she can remain in her home then it should be with a live in caregiver. Seems Social Services are behind the times re: AD... and they should not be totally relying on the good graces of neighbors if there is no family. They are her protectors... > Not joking about the tides - channels come and go due to reflected signals > off the sea going in and out of phase with direct signal. I used to use 2 > switcheable aerials set at different heights but now use fta satellite. FWIW I lived in sight of the sea for 10 years and never noticed any difference in reception at different times, and the aerial pointed straight over the sea, but maybe you have some strange reception conditions where you are. Where is it? > She is not an old person (late 50's) and only slowly getting worse over > the last few years. Small fairly secluded community who look after one > another and she is looked in on a very regular basis. S services are aware > but along with the locals think she will be better at home as long as > possible. They are wrong if she is alone. > Thinking maybe get a universal remote for each piece of equipment, disable > unused or unneeded keys and colour code the units. > What do you think? I think you are working under the false apprehension (but quite understandable if you havent dealt with this condition before) that simple = doable. Whereas if simple=new, then new=not doable. She's have to learn something new to have this work, and people with Az *cannot* learn new things. That is almost the very definition (or one of them) of this condition. As I said, with a new mobile that my father had, when he just had to remember 1 button, he couldnt. A few months later he had forgotten what a mobile phone was. And then, I was in a supermarket with him, and there was a large set of TV's on sale, and he asked me what they were, at first I thought he was joking! This is where your person is heading, as you can see, dealing with a simple colour coded remote wont cut it if she doesnt know what a tv set or a remote is. Now you might think you can sit down with her and explain it, and then she'll demonstrate back to you that she does understand it. maybe you have even done something similar in the past with her. The problem is, within a few hours, or maybe minutes, or maybe before you even left the house, she will have forgotten it. maybe you think you could write it down for her you think?...well she'll have to remember its written down. Think of Az as being like an eraser magnet working backwards, starting at the most recent memories. So things like mobile phone, remote controls, microwaves, all these are fairly recent and will go first, its not that she'll forget how to use them, she wont even know what they are. You'd be better off getting her a bakelite radio. But, in any event, this situation isnt tenable, much as I'm sure you mean well, its not going to end that way if she is living on her own 1/2 mile from help. Finally, if she is in her late 50's with Az, that is likely to be worse as that is called Early Onset (EOAD), and from what I have read here, sufferers typically experience a *much quicker* decline than people who get it in their 70's or 80's. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com >"Mick" <reply@newsgroup.please> wrote in message Where is it? >> She is not an old person (late 50's) and only slowly getting worse over >> the last few years. Small fairly secluded community who look after one [quoted text clipped - 3 lines] > >They are wrong if she is alone. Being in seemingly a similar state of the disease, I disagree (strongly). >I think you are working under the false apprehension (but quite >understandable if you havent dealt with this condition before) that simple = >doable. Whereas if simple=new, then new=not doable. You choose, incorrectly, to totally ignore the personal abilities of the person in question. That is typical of the arrogance displayed here somewhat too often. I would - and she might, similarly - prefer to die other than under of the lash of arrogant, albeit loving, carers. Just who gives you the right to countenance what I or any other sufferer should choose by way of final moments. We might not seek great age but, instead, the freedom to choose. >She's have to learn something new to have this work, and people with Az >*cannot* learn new things. That is almost the very definition (or one of >them) of this condition. And that is utter crap!! I am 53 years old. I have had A.D. for somewhere between 1 and 2 years and I can still learn new things -- far less than I might prefer but enough to suggest you should pay more attention to the honesty/accuracy of what you write. >Finally, if she is in her late 50's with Az, that is likely to be worse as >that is called Early Onset (EOAD), and from what I have read here, sufferers >typically experience a *much quicker* decline than people who get it in >their 70's or 80's. anthony shipley Run away with me; I can make you unhappy. >>I think you are working under the false apprehension (but quite >>understandable if you havent dealt with this condition before) that simple [quoted text clipped - 4 lines] > in question. That is typical of the arrogance displayed here somewhat too > often. Well those abilities have been confirmed in a follow up from Mick, and we see that I was correct (as were the other posters), she cant even manage a new type of tap (aka faucet for our US brethren). It is also ironic to be accused of arrogance by someone who thinks its ok to endanger other people by acts such as committing suicide on the public roads by dangerous driving. > I would - and she might, similarly - prefer to die other than under of > the lash [quoted text clipped - 3 lines] > might not > seek great age but, instead, the freedom to choose. People with significant degrees of Az dont have the ability to make rational choices , any more than the 2 year old who wants to let go of his mothers hand and choose to run out into the road has an ability to make a rational choice. The only way as an adult that you can significantly exercise a choice is to write a living will. Even then, if that said 'leave me in my own home at all costs' how many people here would do that to a relative or friend if the person was freezing to death in a house with the gas on but not lit not having eaten for days, and in their own filth? (just putting all together some of things that people have posted here?). One could reasonably argue that the person who made the living will, isnt the same person now suffering. >>She's have to learn something new to have this work, and people with Az >>*cannot* learn new things. That is almost the very definition (or one of >>them) of this condition. > And that is utter crap!! No, *that* is crap. If you can learn new things, and retain the memory of them for significant periods of time **you dont have Az** in any meaningful manner. > I am 53 years old. > [quoted text clipped - 3 lines] > pay more > attention to the honesty/accuracy of what you write. You also have someone on hand to give you your medication at the right times in the right dosages. She doesnt. Its really hard to understand why you think you have Az Anthony, since as you have previously told us, you can learn new things, dont seem to forget anything, and in fact no one can notice (according to you)that you have any deficits at all. I dont know if you are genuine , or a troll, but in any event your posted experiences here are **so far from what every other single person has posted** that they are only at best tangentially relevant. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com >>>I think you are working under the false apprehension (but quite >>>understandable if you havent dealt with this condition before) that [quoted text clipped - 61 lines] > single person has posted** that they are only at best tangentially > relevant. Hi Tumbleweed, I must confess I have thought the exact same thing a few times. Either Anthony really hasn't got AZ at all, or he is in deep denial about his abilities and deficits. I don't imagine for a minute that a person with AZ could figure out how to post messages to a computer and to read them as well, since by the time a person is usually diagnosed, they are having a hard enough time figuring out how to use things like the faucet and the gas stove, much less a computer and a keyboard. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') >Hi Tumbleweed, > [quoted text clipped - 7 lines] >how to use things like the faucet and the gas stove, much less a computer >and a keyboard. Well, if that's true, I should go out and sue my psychiatrist who wouldn't diagnose my on the basis of reported behaviour and insisted on and MRI and PET scans. Do you know how expensive those machines are, Evelyn? You could make a fortune if you used your diagnostic skills. I feel like a proper bastard, Evelyn, being so sarcastic but your claims to knowledge in a vacuum should not be allowed to stand without question. anthony shipley Run away with me; I can make you unhappy. Evelyn, I am always amazed at how mean you are to Anthony since you love to crow about the compassion you have for people with alz.. Based on your postings, you really have minimal experience with the early stages of alz.. Just because you waited until your MIL was in a terrible state before you intervened, doesn't mean everybody with Alz. is at the stage you found your MIL. Anthony's descriptions are very similar to what I've observed with my mother, although the minute she was diagnosed she relinquished her car: so much for the idea that people with alz can't think rationally. My mother, who was recently placed in memory care, just learned how to use a new remote control and she is still able to consult written directions for using her TV. By the way Tumbleweed, my mother has Alz. in a VERY meaningful way. I don't imagine this newly learned skill will last long, but she has it for now. Also, although she was diagnosed only a year and a half ago, my step-father reported signs of alz five-six years ago. That is the same time period my mother learned to use a computer and write emails. She doesn't have that skill now, but she did learn about computers without having any previous exposure to them and used one for a couple of years. I do think the woman in the UK needs intervention. On the other hand, Anthony posted some of the most helpful advice I received after I posted a message about my mother getting lost. Yes, I know everyone on the internet has a right to express themself and so that's what I'm doing now. Meg > >>>I think you are working under the false apprehension (but quite > >>>understandable if you havent dealt with this condition before) that [quoted text clipped - 86 lines] > > (to reply to me personally, remove 'sox') >Yes, I know everyone on the internet has a right to express themself >and so that's what I'm doing now. Thanks for that, Meg. It's nice to have _some_ support :-) For those who might ignore them, here's a link to Australia's standards with respect to fitness to drive. http://austroads.com.au/aftd/priv.html As for learning new skills, certain people might benefit from citing appropriate references for their assertions. >Meg > [quoted text clipped - 88 lines] >> >> (to reply to me personally, remove 'sox') anthony shipley Run away with me; I can make you unhappy. What about those "psychiatric disorders"? Isn't that what Alzheimers is? Gwen >>Yes, I know everyone on the internet has a right to express themself >>and so that's what I'm doing now. [quoted text clipped - 133 lines] > > Run away with me; I can make you unhappy. >What about those "psychiatric disorders"? Isn't that what Alzheimers is? And how many times have I stated that my Psychiatrist is happy for me to drive? anthony shipley Run away with me; I can make you unhappy. > Evelyn, I am always amazed at how mean you are to Anthony since you > love to crow about the compassion you have for people with alz.. Based [quoted text clipped - 5 lines] > was diagnosed she relinquished her car: so much for the idea that > people with alz can't think rationally. One example of thinking rationally doesnt mean that all decisions are rational. Unless someone is there to oversee the decions, some will be irrational and will be taken. Even relinquishing the car, she might forget she did that and start driving again 3 months later, unless there is someone to supervise. > My mother, who was recently > placed in memory care, just learned how to use a new remote control > and she is still able to consult written directions for using her TV. How old is she? I'm guessing she isnt mid 50's? > By the way Tumbleweed, my mother has Alz. in a VERY meaningful way. I > don't imagine this newly learned skill will last long, but she has it [quoted text clipped - 4 lines] > without having any previous exposure to them and used one for a couple > of years. OK I agree there is some hyperbole here, but lets run with this and your experience. Here is a woman living on her own, 1/2 mile from any help, which for all intents and purposes may mean there is no help. We can either think that she may be able to learn something new, like your mother, which in this case is a new remote control, or we can focus on the big picture ..alone, no help..and give advice about that. Now as it has turned out, she can't even manage to work out how a new tap(aka faucet) works so the chances of mastering a new remote would seem to be, well remote. But even if she could learn that new skill, the big picture is, she is going to forget how that works within a relatively short time, and be in significant danger in the meantime because she is alone with no help. From your description, your mother, though she learned to use a computer, was not alone, which makes a huge difference in two ways, First, she had someone there to help her out, even if slightly, and give her memory a jog. The woman we are discussing is alone. I'm sure there would have been many times your father prompted your mother, when had she been alone, she would have been completely stumped. Secondly, if there is any medication being taken, your mother had someone to supervise her. This woman doesnt so will likely decline even faster. So, we can go one of two ways. 1.Anthony's typical diagnosis, which is that the person would often be quite capable by herself and doesnt need to go into care (a common theme of his), and focus simply on the best way this woman might be able to learn a new remote control. 2. Realise that in 5 minutes, hours, weeks or even months she will forget, so the big picture is, she is in significant danger, because chances are she wont be taking her medication properly, will decline faster (she also has EOAD, where decline is faster) and will put herself in danger from many different sources. If we go with option (1) we also give the person who seems to be helping her out, the false impresion that the best way to cope with Az is to get simpler stuff for them, when in reality its that they need round the clock care, and if that cant be provided at home, then it needs to be provided in some other way, eg care. Otherwise, what we'd here is that, hey the new simple remote control worked really well for 3 months but she then died when her home burnt down after she lit the gas and forgot about it. > I do think the woman in the UK needs intervention. On the other hand, > Anthony posted some of the most helpful advice I received after I > posted a message about my mother getting lost. So that wouldnt have been the advice that it was preferable to die by comitting suicide in a car by crashing into someone else? SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com > One example of thinking rationally doesnt mean that all decisions are > rational. I understand that, which is why I moved my mother close to me years before the diagnosis because I sensed something was amiss. At the time I attributed it to becoming frail and elderly. I just tend to bristle at over-gerneralizations. > From your description, your mother, though she learned to use a computer, > was not alone, which makes a huge difference in two ways, First, she had [quoted text clipped - 4 lines] > taken, your mother had someone to supervise her. This woman doesnt so will > likely decline even faster. I agree that being alone is not good for someone with Alz. even in the earlier stages, and will emphatically encourage the poster to seek help for the woman living alone in the UK. Tangentially, in my mother's particular case, she was not yet taking medication and my step father did not have the slightest idea how to use a computer. In fact, she was caring for him and supervising his medication. She held it together pretty well until after he died, though he often would scare us with warnings about her memory. . > > I do think the woman in the UK needs intervention. On the other hand, > > Anthony posted some of the most helpful advice I received after I > > posted a message about my mother getting lost. > > > So that wouldnt have been the advice that it was preferable to die by > comitting suicide in a car by crashing into someone else? After my Mom got lost and we couldn't bear to think about placing her in a memory care facility this is what Anthony said: "I sympathise with caregivers and the difficult choices they need to make. As a sufferer, I fear dying/injury more than loss of dignity or years of cloistering. " Meg -- > Tumbleweed > > email replies not necessary but to contact use; > tumbleweednews at hotmail dot com > After my Mom got lost and we couldn't bear to think about placing her > in a memory care facility this is what Anthony said: [quoted text clipped - 3 lines] > sufferer, I fear dying/injury more than loss of dignity or years of > cloistering. " Are you sure he said that? Seriously, no sarcasm meant. I'd have thought it was likely to be the other way round, since he has many times talked about not wanting to go into care, how sufferers are more independent that most (of us here?) usually think, how they lose their dignity and so forth,and how he'd rather die quickly in a car crash by driving into someone, rather than over an extended period of time in a home. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com > > "I sympathise with caregivers and the difficult choices they need to > > make. As a [quoted text clipped - 9 lines] > > -- Yes he did. Look for his post July 10, 2005 7:43. I think what Anthony said back then speaks volumes about the disease process and also about Anthony. Meg > I think what > Anthony said back then speaks volumes about the disease process and > also about Anthony. well, my assessment is not based on one post, but on the totality of his posts, which is why he's in my killfile. he has lied in groups postings and then admitted in emails that he did it to be provocative, which i didn't find amusing. he has harped and harped about how he's such a great driver when it's a proven fact that AD sufferers have no real insight into their cognitive deficits. he takes great offense when someone posts concerns about someone diagnosed with AD still driving and one of us suggests that the poster do anything they can to get the bad driver off the road, as if it were a personal attack on his driving, and he does it constantly. that's why i don't care if i ever see or answer another of his posts. after a year, he has offended a lot of people here, and most of us have killfiled him. >Yes he did. Look for his post July 10, 2005 7:43. I think what >Anthony said back then speaks volumes about the disease process and >also about Anthony. > >Meg Please tell me :-) anthony shipley Run away with me; I can make you unhappy. >Are you sure he said that? Seriously, no sarcasm meant. I'd have thought it >was likely to be the other way round, since he has many times talked about >not wanting to go into care, how sufferers are more independent that most >(of us here?) usually think, how they lose their dignity and so forth,and >how he'd rather die quickly in a car crash by driving into someone, rather >than over an extended period of time in a home. Thanks, that sounds better. I don't recall the intention to drive into somebody but I may have mentioned a bus (which somebody may have correctly pointed out why that was not a sensible option considering bystanders, occupants etc.) anthony shipley Run away with me; I can make you unhappy. >After my Mom got lost and we couldn't bear to think about placing her >in a memory care facility this is what Anthony said: > >"I sympathise with caregivers and the difficult choices they need to >make. As a sufferer, I fear dying/injury more than loss of dignity or years of >cloistering. " I'll accept you attributing that comment "However the statement "As a sufferer, I fear dying/injury more than loss of dignity or years of cloistering."" to me, but don't recall it. I suspect that it was made early, or before, my diagnosis. I don't recall it since but, obviously, can't recollect with sufficient accuracy. anthony shipley Run away with me; I can make you unhappy. > I'll accept you attributing that comment "However the statement "As a sufferer, > I fear dying/injury more than loss of dignity or years of cloistering."" [quoted text clipped - 6 lines] > > Run away with me; I can make you unhappy. Anthony, you may not remember posting the messages shown below, but I suspect they are the ones most memorable to those of us who read them here. They certainly made an impact on me. My first thought was for the poor soul that must deal with the outcome because I have friends that have been involved in the like. Having someone use your vehicle or property to commit suicide (actively or passively) can be a haunting experience and it's generally very hard for someone to deal with the visual memories. Throwing yourself in front of someone else's vehicle just spreads the psychological chaos. Having said that, I'll acknowledge that if your situation was diagnosed by scans before behavioral symptoms became apparent, it's possible that your driving ability might not be impacted for awhile. Here in the US, there usually has to be some very obvious symptoms for the insurance companies to ante up for the scans and usually the family has known something was up for awhile. But it has to get bad enough first. There's no way of knowing how much ability could be preserved if brain scans were routine and drug therapy could be started before lose of function becomes drastic. OTOH, I'm convinced 25% of the drivers on the road are not competent -- due to nothing more complicated than arrogance and stupidity. This doesn't mean the incompetent ALZ people s/b driving too, just that they are far from the only ones. Karen --------------------------- Anthony Shipley Feb 21, 6:15 am You should be pleased to know that I intend to preserve my wife from the ravages of being an AD carer by, when the time comes, driving my motorcycle into a tree or a bridge. If you'd like, I could send you a card so you can rejoice! http://groups.google.com/group/alt.support.alzheimers/msg/ea5081128fe559f0?hl=en& -------------------------- Anthony Shipley Aug 16, 200512:29 am I'm like that insofar as I can't find my way to places I used to frequent often. Despite that, I'm --currently-- nowhere driving on the wrong side of the road. It's natural for a carer to be overly protective. Likewise, it's natural for a doctor to be overly cautious -- there are such things as writs. The result can be caution overdone, I understand that, but I would hope that my carer(s) recognise that I am approaching the term of my natural life. I still want to live it -- even if it means I get stuck between the tyres of a large truck. That's far better than choking on my porridge (or eating it :-p http://groups.google.com/group/alt.support.alzheimers/msg/b81d74bb5105bbee?hl=en& -------------------------- >Anthony, you may not remember posting the messages shown below, but I >suspect they are the ones most memorable to those of us who read them here. [quoted text clipped - 27 lines] >into a tree or a bridge. If you'd like, I could send you a card so you can >rejoice! Yep, that sounds correct. My wife doesn't want me to get a motorbike for that reason. I'd still like to get one but - if using it for that nefarious purpose, I'd now be more careful to not injure anybody else. >http://groups.google.com/group/alt.support.alzheimers/msg/ea5081128fe559f0?hl=en& >-------------------------- [quoted text clipped - 10 lines] >large truck. That's far better than choking on my porridge (or eating it :-p >http://groups.google.com/group/alt.support.alzheimers/msg/b81d74bb5105bbee?hl=en& It's still true that the only real symptoms I have is increasingly short-term memory failures. That also means, when I attempt to do things I haven't done for some time, it requires more than usual determination. I know, for example, I could go back to programming and be effective but much less productive. For all I know, however, if I did that, I could possibly be relatively productive (but only to the extent allowed by reliance on memory - but that doesn't sound viable to me). So what does all that imply. Quite obviously, A.D. diagnoses are not like extracting a tooth. While I'm in an unusually generous mood, I'd like to apologise to both those groups of carers who disagree with some, or all, of what I have said here; especially wher I might have been offensive. I don't seem to recall any other A.D. sufferers here (If they are here, they are pretty quiet -- or pretty constrained by their carers). That must mean that you carers must rely on and each other to guess what it's like to be a sufferer of this disease. Because of that, I hope my presence here does have some benefit to either you and who you care for and/or you yourself. I'm not sure what this forum would be like if there were other sufferers posting.. Maybe it's better that there is only me, having more might just make it noiser here.. On the other hand, maybe there is sufficient difference in our experiences that it would help you... and/or us. Bringing this rambling post to a conclusion, maybe it's my early onset age and my first hand of the experience that seems the rift is bigger that we might otherwise expect it to be. I don't think it's possible for caretakers of this disease (Yes, it is horrible but we must also remember that those of us who are carers or sufferers anthony shipley Run away with me; I can make you unhappy. Anthony, I think the reason for the scarcity of posters ties back to the same issue I mentioned before. In most situations (in the US), the scans for diagnosis aren't done until there are obvious behavioral signs. This means the persons abilities are usually very impacted by the time Alzheimer's is diagnosed. Added to that is the fact that apparently, quite a few (my MIL included) become very argumentative and unstable before someone else can step in and take over. The law in the US won't let you take over your parent's medical care and force a doctor's visit until it becomes an obvious problem. My MIL's primary doc had known there was a problem and recommended my MIL to a specialist but my MIL's response was "I can't afford a specialist" even though she could have (she just didn't remember it). One other reason for the lack of posters might be familiarity with computers -- they aren't new news to you. There is a broader base of knowledge that has been built over the years and if the AD nibbles away at one memory thread there's several others that might get you to the same thought. If AD isn't diagnosed or treated until the symptoms are glaringly obvious, the ability to learn may be inhibited resulting in a smaller knowledge base, fewer threads of memory reference. Aside from that, most of the people I know over 55 (including the people at my office) don't have a computer at home so they aren't building that knowledge base before diagnosis. That's my theory anyway. In any event, I'm glad you participate. Having to take control of my MIL's life, sell her house and move her against her will into an ALZ AL facility was one of the hardest things I've had to do. It helps to hear an opposing POV, even if I don't always agree. I wonder what's coming up behind me when all views point the same direction. :-) Karen > It's still true that the only real symptoms I have is increasingly short-term > memory failures. That also means, when I attempt to do things I haven't done for [quoted text clipped - 33 lines] > > Run away with me; I can make you unhappy. >Anthony, I think the reason for the scarcity of posters ties back to the >same issue I mentioned before. In most situations (in the US), the scans >for diagnosis aren't done until there are obvious behavioral signs. That makes a lot of sense. I was at the peak of my career, was patently aware of memory blackouts and unable to get any diagnosis other than depression (and that being the only potential cause of the depression). Some 2 years later, little has changed other than loss of career and memory (probably appropriate to add in some behavioural changes - according to poor wife). >This >means the persons abilities are usually very impacted by the time [quoted text clipped - 17 lines] >computer at home so they aren't building that knowledge base before >diagnosis. That's my theory anyway. Ahem! I'm still only 53 :-p >In any event, I'm glad you participate. Having to take control of my MIL's >life, sell her house and move her against her will into an ALZ AL facility >was one of the hardest things I've had to do. It helps to hear an opposing >POV, even if I don't always agree. I wonder what's coming up behind me when >all views point the same direction. :-) And thanks a lot for your support and helpful comments (I guess there are only a small percentage of A.D sufferers who are fortunate enough (???) to consciously participate on the A.D. journey. It'll be interesting to see how long I'm able to participate here and to be introspective about my condition. I guess the challenge for me is to get my wife to use this forum to help her when I'm not able to participate. I hope you'll all remember me --if not miss me -- when my keyboard gathers dust :-) anthony shipley Run away with me; I can make you unhappy. I will remember you fondly Anthony. SignatureLesanne > >>Anthony, I think the reason for the scarcity of posters ties back to the [quoted text clipped - 66 lines] > > Run away with me; I can make you unhappy. >I will remember you fondly Anthony. Hey, I didn't say "tomorrow"!! At least, give me some time to annoy a few people!! anthony shipley Run away with me; I can make you unhappy. Considering how far behind I am reading newsgroups most of the time because of all I do, you never know ;):). SignatureLesanne > >>I will remember you fondly Anthony. [quoted text clipped - 6 lines] > > Run away with me; I can make you unhappy. > >Anthony, I think the reason for the scarcity of posters ties back to the > >same issue I mentioned before. In most situations (in the US), the scans > >for diagnosis aren't done until there are obvious behavioral signs. > That makes a lot of sense. I was at the peak of my career, was patently aware of > memory blackouts and unable to get any diagnosis other than depression (and that > being the only potential cause of the depression). This supports something I've thought for a long time -- the changes from ALZ start a lot earlier than is currently acknowledged. > Some 2 years later, little has changed other than loss of career and memory > (probably appropriate to add in some behavioural changes - according to poor > wife). ---snip--- > >One other reason for the lack of posters might be familiarity with > >computers -- they aren't new news to you. There is a broader base of [quoted text clipped - 7 lines] > >diagnosis. That's my theory anyway. > Ahem! I'm still only 53 :-p And you're ahead of the curve. As mentioned, most people aren't diagnosed so young. For your sake, I'm glad they were able to diagnose it and prescribe something to slow the progression. > >In any event, I'm glad you participate. Having to take control of my MIL's > >life, sell her house and move her against her will into an ALZ AL facility [quoted text clipped - 5 lines] > participate on the A.D. journey. It'll be interesting to see how long I'm able > to participate here and to be introspective about my condition. Maybe it's a peculiar POV but I think I would prefer to know what's happening to me. But then, I refuse to take gas at the dentist too. :-) > I guess the challenge for me is to get my wife to use this forum to help her > when I'm not able to participate. She'd be very welcome and I think it would provide her with some support. > I hope you'll all remember me --if not miss me -- when my keyboard gathers dust > :-) Definitely! But I'll have to warn you that my boss and I have started reacting with a great laugh when anyone begins a sentence to us the the word "Remember ..." I wonder if it's just my experience or if everyone is suffering from information overload. > anthony shipley > > Run away with me; I can make you unhappy. >This supports something I've thought for a long time -- the changes from ALZ >start a lot earlier than is currently acknowledged. Well, I was told, and have no reason to doubt it, that forgetfulness is a symptom of depression -- as well as A.D. Otherwise, I can't comment on that. It makes sense to first treat patients for depression until other symptoms manifest themselves. Unfortunately, for me, my declarations that I wasn't depressed other than because I was forgetful. I have no gripe against those who treated me (other than the cost of hopping from therapist to therapist. I was, possibly too informed (given the availability of usenet etc (of which I think the therapists were, and might still be). That suggests another issue. How many many practictioners dealing with A.D. make use of usenet? Does that suggest that carers are far more familiar with the disease 'experience' than carers who have little, if any, medical knowledge? anthony shipley Run away with me; I can make you unhappy. > >This supports something I've thought for a long time -- the changes from ALZ > >start a lot earlier than is currently acknowledged. [quoted text clipped - 5 lines] > manifest themselves. Unfortunately, for me, my declarations that I wasn't > depressed other than because I was forgetful. Our knowledge of the brain is still way too rudimentary. Hopefully, they'll do with ALZ what they did with AIDS. 25 years ago, the notion of a person with AIDS living for several decades sound like a pipe dream. But once they make a key discovery, the discoveries can cascade rapidly. > I have no gripe against those who treated me (other than the cost of hopping > from therapist to therapist. I was, possibly too informed (given the [quoted text clipped - 4 lines] > use of usenet? Does that suggest that carers are far more familiar with the > disease 'experience' than carers who have little, if any, medical knowledge? I'll take practical experience over book experience. The best tips I've gotten on dealing with my MIL has come from people on the front lines that actually work with people that have ALZ and dementia. I know some of what is said here sounds like the carers are over-protective but here in the US, you can be held liable for not taking steps that seem obvious in hind sight but at the time seemed over-reactive. I think the US is going to be forced into some tough changes to the medical, insurance and legal systems when the boomers start hitting the system with ALZ. > anthony shipley > > Run away with me; I can make you unhappy. > Evelyn, I am always amazed at how mean you are to Anthony since you > love to crow about the compassion you have for people with alz. she's not being mean, she's being realistic. and she's right. >> Evelyn, I am always amazed at how mean you are to Anthony since you >> love to crow about the compassion you have for people with alz. > > she's not being mean, she's being realistic. and she's right. As I see it you're all correct here. Anthony has alz. that we know. I can tell you that based on what my mother has gone through for more than 12 years now that his is probably much different than the mainstream alz. As I have posted before....My mother drove from Florida to Indiana (1100 miles) and back for almost 2 years after her doctor diagnosed her with dementia. After that my brother would drive her car down there and leave it for her to use and bring it back to Indiana in the summer for her to use. Quite frankly we were all in denial at first because she was only a little forgetful but could easily function if she wrote things down on her calendar. It was 8 years into her illness that I finally turned her into the state of Florida for driving. I knew it was wrong and had to stop. My brother has only recently conceded that Mom has a serious problem. She has no delusions, remembers family easily, can still use the telephone to call me or my brother's cell phone and is quite well physically. The other side of coin is her short term memory is almost non existent and her ability to make decisions is pretty well gone too. Her long term memory seems to be pretty good but it's mostly her childhood that she remembers now. She is like a child. Easy to get along with and dependant on my brother and me to make sure she is looked after. She has never gotten lost when she goes for walk. It's hard for people who are familiar with the other kinds of alz to understand this kind. BTW Mom goes to assisted living right after Christmas. She's ready to go. She almost knows her limitations now. Strange illness-- this horrible disease. The downside of this kind of this dementia is that it lasts for years and years but the upside is (if there is such a thing) that it's much easier to manage. I'm certainly no expert but I hope this helps sort out what Anthony may have from what most people have.......June I think what colours many of our experiences here is that having been through the full gamut of AD from one end of the illness to the other - you realize that you need a pessismistic outlook! I know that sounds crazy and the exact opposite of the way we all approach other illnesses, but if you are a pessimist about what is going to happen, then you are assuming worst case, and planning for that. Then if it doesn't happen right away, you get to be pleasantly surprised, and secure in the knowledge that the legwork is done for when things advance. You can relax and enjoy the extra time, knowing its a gift. June's mother has had AD for years and years and is still relatively functional - and that isn't typical. The average length of time from diagnosis to death is shorter than that. My MIL was 6 years, starting as a healthy 73 year old. Here is an interesting article on some relatively recent research. http://www.nih.gov/news/pr/apr2004/nia-05.htm I am most stung by the memories of the failures in our planning - the times when we didn't quite dodge the bullet because we didn't fully appreciate what Alzheimer's meant - i.e. that it isn't just a disease of memory, but a complete dismantling of mental functions. We did sometimes overestimate her abilities, and not so pleasant episodes ensued - her sealed in a hot apartment, letting strangers in, overdosing on pills, burning herself on the kettle etc. I have had a number of my MIL's friends comment to me that at the time they thought we moved ahead arranging supports too aggressively, but in retrospect, they recognized that the timing was just about bang on - and the only reason for that was us really keeping a very close eye on what was going on, and being very conservative and pessimistic. Hey, you make a plan, you put a name on a waiting list, no one says you need to take the first placement that comes up. You can be thrilled you don't need it, and give things another few months of watching and waiting. M. >I think what colours many of our experiences here is that having been > through the full gamut of AD from one end of the illness to the other - > you realize that you need a pessismistic outlook! Exactly! Esp as, when they really do need to be placed in care *now*, as the result of one crisis or another, then if you didnt do that planning months ahead, you are going to end up with something very unsatisfactory for them and you. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com >>I think what colours many of our experiences here is that having been >> through the full gamut of AD from one end of the illness to the other - >> you realize that you need a pessismistic outlook! And how have I not demonstrated that? >Exactly! Esp as, when they really do need to be placed in care *now*, as the >result of one crisis or another, then if you didnt do that planning months >ahead, you are going to end up with something very unsatisfactory for them >and you. Ah, yes. You have naturally sampled the facilities and services available at the local hospitals and our support group of friends/family? anthony shipley Run away with me; I can make you unhappy. so does that mean I won't get jumped on if I mention that we turned down a placement offer today? LOL Somehow I doubt it! but we did ... MIL has been doing SO well since we got her meds sorted out - she sleeps through the night, she smiles, she's mostly compliant.... we're doing well and not ready to place her right now >I think what colours many of our experiences here is that having been > through the full gamut of AD from one end of the illness to the other - [quoted text clipped - 32 lines] > > M. > so does that mean I won't get jumped on if I mention that we turned down a > placement offer today? LOL No thats the point, you had the luxury of turning it down, but sound like as and when things get worse, you will be in a good position rather than scrambling around and possibly being forced to take the first thing offered.. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com no predicting how long a wait for the next one... it tosses us to the bottom of the list... but hubby & I - and the one sister that actually is here and helps out, and the one that NEVER does - are fine with that haven't heard from the one sister that shares the joint POA & pops in (without notice so we can't PLAN anything about once a month) - but all expectations are that she will strongly disagree with our decision but what's the worst that can happen...she won't show up (without notice so we can't plan anything anyway about once a month?) ..... we'll cope If it HADN'T been for the med change, I'd likely be flipping right about now ... if he hadn't accepted the bed, I mean..... until that, we were NOT coping.... and MIL was SO bluddy unhappy & miserable that none of what we were going through seemed in the least bit worth it amazing how much more 'worth it' it seems when she's happy and smiling some of the time. Doesn't mean it's all perfect.... there are still days when she drives me BONKERS (usually when she needs to have a B.M. and is DETERMINED to do it someplace other than the toilet!) ... but it's all so much more doable on a full night's sleep Didn't realize how sleep deprived we were until we weren't! >> so does that mean I won't get jumped on if I mention that we turned down >> a placement offer today? LOL [quoted text clipped - 3 lines] > scrambling around and possibly being forced to take the first thing > offered.. > so does that mean I won't get jumped on if I mention that we turned down a > placement offer today? LOL [quoted text clipped - 3 lines] > mostly compliant.... we're doing well and not ready to place her right > now Of course you won't get jumped on! :-) That is great news that things are going so well, Lee. You are also in a position, that if things do get more difficult, that you know what the process is all about, and can move to place her later on if you need to. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Lee, I'm so glad that she is doing so much better. Gwen > so does that mean I won't get jumped on if I mention that we turned down a > placement offer today? LOL [quoted text clipped - 40 lines] >> >> M. > I am most stung by the memories of the failures in our planning - the > times when we didn't quite dodge the bullet because we didn't fully [quoted text clipped - 3 lines] > ensued - her sealed in a hot apartment, letting strangers in, > overdosing on pills, burning herself on the kettle etc. I agree Mary, which is why I tend to focus on the abilities of people in the early stages of alzheimer's rather than their deficits because my mother's terrific abilities and indepndence in the early stages made it easy for me to deny the possibility of alzheimer's, despite my step father's warnings. I thought he was just being overly critical of my mother because at the time she was still learning, a great conversationalist, wonderful about remembering character's from books and discussing politics in detail, managing medications for herself, her husband, and her dog and managing her finances. Even after the diagnosis, her memory still seemed pretty good, but her cognitive functions and even visual perception skills were in definite decline. I think my family would have planned differently had we known what was to come. But she was able to mask many of the symptoms of Alzheimer's because many of her skills were well preserved. Even now aides at memory care have expressed surprise at her being placed there. She's hanging onto those social skills for dear life so she looks competent in many ways. Meg > Strange illness-- this horrible disease. The downside of this kind of > this dementia is that it lasts for years and years but the upside is (if > there is such a thing) that it's much easier to manage. I'm certainly no > expert but I hope this helps sort out what Anthony may have from what most > people have.......June Well said, June. I think that this kind of illness, usually all gets lumped together under the term "dementia" can consist of many different causes and symptoms. All too often the term "alzheimers disease" is used, when it may have more than one cause, or it may start in a different area of the brain, causing one kind of deficit and not another. I am not expressing myself too clearly here, but I think that those who have posted here for a long time, know that we have seen quite a few stories involving this diagnosis, yet some show different symptoms than others. Does anyone here remember Char's husband? His symptoms were incredibly baffling, and yet it was called "Alzheimers" even though he certainly did not fit the usual mold. It almost seemed as though the diagnosis was a last ditch default call, when they couldn't figure out what else it could be. I also know that denial of impairment is rampant, in the case of sufferers, but also occasionally in caregivers and even more often seen in extended family and friends, and oddly enough, sometimes it is even seen in medical people who are reticent to make the call. I know very well that every person who gets a diagnosis is not immediately rendered incompetent in all areas. Anyone who said that would be a fool. But if I were diagnosed with this illness, I would like my own family to make sure I was safe...... and if that meant not driving, or not being left alone to fend for myself in a world that was becoming more strange by the minute, then so be it. As regards Anthony, he DOES seem to be one of the ones who doesn't quite fit the usual mold. His error is to imagine that all other people with the same diagnosis, fit HIS mold, and that all the "mean" caregivers are overzealously trying to overprotect and restrict the freedom of their loved ones, even while they are still capable. .......Nothing could be further from the truth. I think that conversely, MOST people wait too long to intervene. MOST people go to the "nth" degree in accommodating their loved ones independence and only when the situation becomes truly out of hand, when danger is already at the door, do they finally, reluctantly make a move to protect their loved one from some disaster. I am sorry if anyone was offended by what I said. No offense was intended. I wish all of you peace and happiness, and that all your loved ones are safe and happy. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > I think that this kind of illness, usually all gets lumped together under > the term "dementia" can consist of many different causes and symptoms. [quoted text clipped - 7 lines] > stories involving this diagnosis, yet some show different symptoms than > others. That's it exactly. Each person is different. Therefore caregivers have consider what works with their LO. What works for Anthony at the stage that he is with alz could be disastrous for someone else. Hopefully Anthony you can hang in there for a cure or at least a drug that controls alz. I've heard of experimental drugs that have actually reversed the affects of alz on the brain. It was on the ABC news over a year ago but I've not heard anything about it since.......June >That's it exactly. Each person is different. Therefore caregivers have >consider what works with their LO. What works for Anthony at the stage [quoted text clipped - 3 lines] >affects of alz on the brain. It was on the ABC news over a year ago but >I've not heard anything about it since.......June Yes, there have been about 1/2 dozen during the last year - but well have to wait somewhat longer for procedures or drugs. It certainly would be wonderful if there was a cure or significant treatment within 5 to 10 years time. We should, of course, remember that most death and disease afflict those in countries without our skills, financial resources etc. anthony shipley Run away with me; I can make you unhappy. >That's it exactly. Each person is different. Therefore caregivers have >consider what works with their LO. What works for Anthony at the stage [quoted text clipped - 3 lines] >affects of alz on the brain. It was on the ABC news over a year ago but >I've not heard anything about it since.......June Quite. I think some here have mistaken some of my remarks to mean that I think I know what is good for Carers. What I do think, is that my experience as a sufferer offer better strategies to improve what remaining time they have. Given that many carers look after people with poor communications skills (hope that sounds like what I mean to say), my comments -- while offensive to some here -- might provide them with knowledge/an insight of how to improve what remains of the life of the patient*. * What is the best term here? I don't really like "patient" or "sufferer". "Loved one", feels a bit overused (to me anyway) anthony shipley Run away with me; I can make you unhappy. >> I think that this kind of illness, usually all gets lumped together under >> the term "dementia" can consist of many different causes and symptoms. [quoted text clipped - 15 lines] > affects of alz on the brain. It was on the ABC news over a year ago but > I've not heard anything about it since.......June I received an a-mail saying that these drugs were only tested on animals. Not so....The man in the story was in his sixties or seventies and was having trouble getting lost when driving his car. After taking the drugs he no longer had any problems with getting lost.....June >>> I think that this kind of illness, usually all gets lumped together >>> under the term "dementia" can consist of many different causes and [quoted text clipped - 21 lines] > having trouble getting lost when driving his car. After taking the drugs > he no longer had any problems with getting lost.....June June I post to another group also and there are always troublemakers who try to run interference behind the scenes. Trust your doctor and trust people who have already been down this road. The drugs help many people. I wouldn't be so presumptuous as to say everybody, but they certainly helped my mother in law and I have heard of many others too. Best Regards, Evelyn Ruut > I also know that denial of impairment is rampant, in the case of sufferers, > but also occasionally in caregivers and even more often seen in extended > family and friends, and oddly enough, sometimes it is even seen in medical > people who are reticent to make the call. With my grandfather, my grandmother had an entirely community of 2000 people abetting & aiding in her denial of the truth of his dementia, including at least two physicians. It was only when she suffered a massive stroke and was forced into a rehabilitiatio unit that he got the evaluation he needed and the treatment that he required, and then the community felt they could tell my father the horrendous stories of how they had covered for his father for 10 years. We believe that time quit passing for him about 5 years before his diagnosis. Shortly after that, the years started unspooling. When he died about 6 years later, he was in a nursing home, with a mental age of about 6 or 7. He could still read and mostly comprehended what he saw on TV. Honestly, his death was one of the easiest I could imagine. He was restless, so the nurses got him out of bed and into the common area to watch TV. About 30 minutes later, they heard him quit talking to the anchorman on CNN. A few minutes later, they checked on him, and he was gone. Quietly and easily, just slipped away, probably from a massive heart attack. Would that all of our loved ones would be so lucky. Beth SignatureDon't go around saying the world owes you a living. The world owes you nothing. It was here first. ~Mark Twain >> Strange illness-- this horrible disease. The downside of this kind of >> this dementia is that it lasts for years and years but the upside is (if >> there is such a thing) that it's much easier to manage. I'm certainly no >> expert but I hope this helps sort out what Anthony may have from what most >> people have.......June Yep, most people have not been clinically diagnosed with A.D. >I think that this kind of illness, usually all gets lumped together under >the term "dementia" can consist of many different causes and symptoms. Quite, which is why standardised diagnosis, as provided by the current scanning technology is imperative. >I am not expressing myself too clearly here, but I think that those who have >posted here for a long time, know that we have seen quite a few stories >involving this diagnosis, yet some show different symptoms than others. There are various versions of dementia. We're only talking about A.D. here >But if I were diagnosed with this illness, I would like my own family to >make sure I was safe...... and if that meant not driving, or not being left >alone to fend for myself in a world that was becoming more strange by the >minute, then so be it. Certainly, you are free to request that, especially given your stated belifs here. In my case, however, I am going to choose, rather the expertise and advise of my specialist than somebody, given Gwen's age, who might also have A.D. but not yet diagnosed. >As regards Anthony, he DOES seem to be one of the ones who doesn't quite fit >the usual mold. No, I inform myself, I judge the value of that information and it's source. I also seek other sources and opposite points of view (part of that is you lot!). > His error is to imagine that all other people with the >same diagnosis, fit HIS mold, and that all the "mean" caregivers are >overzealously trying to overprotect and restrict the freedom of their loved >ones, even while they are still capable. .......Nothing could be further >from the truth. I think that's a wholesale misrepresentation or the points of view I have posted. >I think that conversely, MOST people wait too long to intervene. MOST >people go to the "nth" degree in accommodating their loved ones independence >and only when the situation becomes truly out of hand, when danger is >already at the door, do they finally, reluctantly make a move to protect >their loved one from some disaster. Certainly MOST people might do that. I have never conformed -- as you might have noticed -- to the path taken by sheep. >I am sorry if anyone was offended by what I said. >No offense was intended. Feel free to try again :-p >I wish all of you peace and happiness, and that all your loved ones are safe >and happy. I like to think we should wish that for all the various animals on our planet. anthony shipley Run away with me; I can make you unhappy. > Evelyn, I am always amazed at how mean you are to Anthony I am seldom mean to anyone, least of all, Anthony. > love to crow about the compassion you have for people with alz. I wasn't aware of "crowing" about anything. > Yes, I know everyone on the internet has a right to express themself > and so that's what I'm doing now. > > Meg I hope it gave you some satisfaction. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') >Its really hard to understand why you think you have Az Anthony, since as >you have previously told us, you can learn new things, dont seem to forget >anything, and in fact no one can notice (according to you)that you have any >deficits at all. I dont know if you are genuine , or a troll, but in any >event your posted experiences here are **so far from what every other single >person has posted** that they are only at best tangentially relevant. I can understand why you all are puzzled. Quite possibly because you are basing your judgement entirely on what I say and _your_ experience of what A..D. is about, namely, somebody in the late stages and about 70 years old. As for me forgetting, check the record; I have posted several times about my gradual, and more recently, quicker loss of recent memories (Well, to be precise, I'm not sure whether those comments were in this forum). Further to that, my experience is that there is virtually nobody posting here with a comparative experience vis a vis the rate of decline and the nature of the decline. There is little benefit for me to pretend or lie here. That is not to say, I'm not accusing anybody of deliberate lying. However, the stress and burdon of caring for an A.D. patient -- especially at your ages, -- is enough to create a different reality to ease that burdon you each carry. I can still remember, a few, memories of my grandfather when he had his dementia. That's an amazing feat. There was probably some 20 years of not thinking of him entirely and now, despite everything else, I can almost see him with his brown hat and trousers -- but not quite his face. anthony shipley Run away with me; I can make you unhappy. Anthony, wouldn't that be consistent with memory unraveling from most recent with older memories going last? Also, I wonder if your psychiatrist was concerned with BSE (mad cow) and that's why all the tests up front? That was one of the first things they tested my MIL for. I've often wondered how early they can diagnose ALZ with the brain scans instead waiting for obvious behavioral signs. Seems like it would help people hang on to more for a longer time. Karen ---snip--- > I can still remember, a few, memories of my grandfather when he had his > dementia. [quoted text clipped - 6 lines] > > Run away with me; I can make you unhappy. >Anthony, wouldn't that be consistent with memory unraveling from most recent >with older memories going last? Cite. >Also, I wonder if your psychiatrist was concerned with BSE (mad cow) and >that's why all the tests up front? >That was one of the first things they tested my MIL for. We don't have that over here. > I've often wondered how early they can diagnose ALZ with >the brain scans instead waiting for obvious behavioral signs. Seems like it >would help people hang on to more for a longer time. The scans are far more specific than any behavioural signs. I'm not aware that there are any behavioural signs that can compare with the scans. That is, it will be about as useful as comparing dreams. anthony shipley Run away with me; I can make you unhappy. > >Anthony, wouldn't that be consistent with memory unraveling from most recent > >with older memories going last? > Cite. Karen: I can find a cite later, I'm getting ready for work right now so I don't have much surfing time. What brought it to mind was a comment about it upstream a bit but I have read elsewhere that as people progress, recent memories are transient but older memories become more vivid. > >Also, I wonder if your psychiatrist was concerned with BSE (mad cow) and > >that's why all the tests up front? > > >That was one of the first things they tested my MIL for. > We don't have that over here. Karen: It was 5 years ago and they didn't have it in the US either, but the doc seemed to think it more likely than someone under 70 having ALZ. It seems I'm hearing about more EOAD now than then but I don't know if it's increasing or they just know what to look for now. > > I've often wondered how early they can diagnose ALZ with > >the brain scans instead waiting for obvious behavioral signs. Seems like it > >would help people hang on to more for a longer time. > The scans are far more specific than any behavioural signs. I'm not aware that > there are any behavioural signs that can compare with the scans. That is, it > will be about as useful as comparing dreams. Karen: But like the witch doctors of old, behavior was all they had to go on decades ago. The brain scans were conclusive with my MIL but by that time her behavior had made it obvious there was a problem (paranoia, rage, incoherence). In the US, it seems the docs wait for behavioral signs to become marked before they order the brain scans. It may be one of the differences between socialized medicine versus convincing an insurance company to pay for the test. If the costs of the scans ever come down, I could see people hitting 50 and scheduling a brain scan like they schedule a colonoscopy. Actually, the brain scan seems more likely, it seems like 50% of the people I know refuse to do the colonoscopy. :-) > anthony shipley > > Run away with me; I can make you unhappy. Karen: Anthony, I woke up this morning and realized the questions I asked about the scan may be a bit personal to ask in an open forum. If it seemed so to you, please accept my apology. I wasn't thinking and posted the first thing that popped into my head without waiting to see if it had any tact popping in afterward trying to catch it. >Karen: Anthony, I woke up this morning and realized the questions I asked >about the scan may be a bit personal to ask in an open forum. If it seemed >so to you, please accept my apology. I wasn't thinking and posted the first >thing that popped into my head without waiting to see if it had any tact >popping in afterward trying to catch it. Karen, and everybody else, please feel free to post without concern. In a forum like this, there are always going to be the odd misplaced word. As for me, don't bother about my feelings; had them taken out with my molars :-p anthony shipley Run away with me; I can make you unhappy. >> Karen, and everybody else, please feel free to post without concern. In a >> forum > like this, there are always going to be the odd misplaced word. > > As for me, don't bother about my feelings; had them taken out with my > molars :-p So that's my problem...I've had an impacted wisdom tooth for 40 years.....no wonder my feelings are so sensitive. LOL June PS... I'm so glad you're posting here Anthony. It shows that sometimes a person can rise above a disease...even Alzheimer's Gives me hope and sometimes hope is all you got. Mick, you've gotten some good advice that's spot on for Alzheimer's. I remember after my MIL had moved to her Assisted Living place, we called her (as we did several times a week) and she told us that she wanted to call us, but couldn't remember our number. This was in spite of the fluorescent pink paper taped to the back of her phone where we had written in black marker "PHONE NUMBER FOR D*** IS 123.456.7890". I wish you luck and appreciate what you're trying to accomplish for her, but I'm not very optimistic about the workability of it. And one of the things I do on my job is detailing new procedures simplistically so it can be understood by everyone. Until it hit my MIL, I never realized what it meant to not be able to absorb new info. Karen > Alzheimer sufferer lives alone relying on neighbours, nearest 1/2 mile away. > Used to have problems with anything technical before she was ill but now > requires a new TV and some form of recording equipment plus digital radio and CD player. Money isn't the problem but getting none complicated > equipment. > Being near the sea the tides affect terrestial reception so satellite would [quoted text clipped - 3 lines] > On/off - radio/tv/cd - volume - channel change is all that's needed. - TIA > Mick Similar s |
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