Re: The Alzheimer's scientist: As I write this, no one has mentioned the risk of failure to the project. If there are serious negative side effects to the LW, the project could be set back for years, both because of the need to report such effects and the possible loss of the doctor to the project. I would definitely not try the drug until safety tests are done.
1
Regarding the administrative-doctor pay:
True market forces should lead to equal pay for equal work. But is the highly-paid surgeon's work really equal to that of the cheaper doctor? While the output might be the same (administrative stuff), the hospital clearly wants doctors of all specialties doing administrative tours, so they value that work differently (even though the output may be the same).
Another way to think of it would be in terms of opportunity cost. The doctors are foregoing the opportunity to see patients when doing administrative work, which is a more valuable opportunity for the higher-paid doctors.
This is not the only place where this sort of thing happens. Schools in my state pay teachers more to do the same thing if they have graduate degrees (whether or not the degrees make them better teachers); work that can be done by paid interns in offices is often done by full-timers making quite a bit more; tradesmen with different levels of skill or experience may be doing the same thing at the same speed but be paid differently; these examples can go on for quite a while. It's just the way it is.
True market forces should lead to equal pay for equal work. But is the highly-paid surgeon's work really equal to that of the cheaper doctor? While the output might be the same (administrative stuff), the hospital clearly wants doctors of all specialties doing administrative tours, so they value that work differently (even though the output may be the same).
Another way to think of it would be in terms of opportunity cost. The doctors are foregoing the opportunity to see patients when doing administrative work, which is a more valuable opportunity for the higher-paid doctors.
This is not the only place where this sort of thing happens. Schools in my state pay teachers more to do the same thing if they have graduate degrees (whether or not the degrees make them better teachers); work that can be done by paid interns in offices is often done by full-timers making quite a bit more; tradesmen with different levels of skill or experience may be doing the same thing at the same speed but be paid differently; these examples can go on for quite a while. It's just the way it is.
1
We empathize with anyone struggling with memory loss and taking it on as they may, but the real question that the Alzheimer's patient's dilemma raised for us is different: Is the letter an elaborate PR stunt? We cannot help but figure that the key industry players can easily figure out what the "small laboratory at a well-known medical center" is that "invented a gene transfer method that stopped the brain damage an restored cognitive function," making a much sought-after cure within reach--if one is to trust his letter writer.
7
Concerning #3, it seems that the simplest solution (although one the hospital probably won't like) is for the hospital to pay everyone the same rate that they currently pay just to the surgeons. That way the surgeons won't be taking a pay cut and there may be more of the lower-paid specialists willing to take on the administrative job.
6
When it comes to saving your own life, high-brow intangible ethics and morals can take a back seat. And who better to understand the potential benefit of a newly discovered and promising medicine than the scientist(s) that brought it into reality? Far better than a board of FDA specialists wanting a 3-5 year monkey test review. If it works it might saves many lives NOW. It is YOUR life so try it. Just make sure your colleagues quietly know what you are up to so in the event it is not working, they may be able to keep you around.
Mom is in the right place. There is nothing you can tell her that will soothe her anxiety - there is no balm for this unfortunate disease. All we did was pray that her suffering was minimal and short-lived (it was and when she passed she told us her husband of 61 years had come for her then expired). This is the agony part of life's Agony and Ecstasy.
To solve this problems and make all things equal perhaps all specialists should be mandated to take a 2 year administrative function at a set salary which will later be adjusted as they enter practice. After all they should be more interested in how the system works as part of their hypocri, err. -cratic oath, so they can better help patients, no? Apparently not.
Mom is in the right place. There is nothing you can tell her that will soothe her anxiety - there is no balm for this unfortunate disease. All we did was pray that her suffering was minimal and short-lived (it was and when she passed she told us her husband of 61 years had come for her then expired). This is the agony part of life's Agony and Ecstasy.
To solve this problems and make all things equal perhaps all specialists should be mandated to take a 2 year administrative function at a set salary which will later be adjusted as they enter practice. After all they should be more interested in how the system works as part of their hypocri, err. -cratic oath, so they can better help patients, no? Apparently not.
3
Regarding LW3, When Mr. Appiah says, "Here the specialty isn’t an irrelevant feature, so it’s O.K. to take it into account," he seems to disregard the LW who specifies, "that a doctor with any specialty can do the administrative job and one whose specialty is less remunerative may well have more administrative experience." Arguably this implies that lower-renumerated specialists may well deserve higher pay for administrative work. If it is the case that a better outcome would result from a wide mix of specialties doing administrative work then, as one commenter notes, such responsibilities could be part of the work contract . . . the surgeons are not likely to starve.
1
Why don't we just provide better quality medical care across the board? That would help #1 with his anxieties about Alzheimer's; it would provide better care for #2, and it would reduce the administrative burden for #3.
This is the richest country on the planet. If we can afford billionaires who pay no taxes, we can afford quality universal medical care.
This is the richest country on the planet. If we can afford billionaires who pay no taxes, we can afford quality universal medical care.
12
Re #3
While I understand the need to have surgeons get administrative experience, and it is certainly likely that they will see opportunities for efficiency and improvement that people without their experience would miss, I don't understand why the hospital doesn't simply increase the compensation for the pediatrician to match what they are offering the surgeon. Leaving aside the question of whether surgeons should be compensated how they are and at such higher levels than their medical colleagues, it must be equally likely that the pediatrician or other medical specialist will bring important insights to the administration of the institution, equal in value to the surgeon's insights. Thus if you value having the one, you should value having the other at the same level. Then, if you must compensate a surgeon at a high level, you must compensate her colleague at the same level.
While I understand the need to have surgeons get administrative experience, and it is certainly likely that they will see opportunities for efficiency and improvement that people without their experience would miss, I don't understand why the hospital doesn't simply increase the compensation for the pediatrician to match what they are offering the surgeon. Leaving aside the question of whether surgeons should be compensated how they are and at such higher levels than their medical colleagues, it must be equally likely that the pediatrician or other medical specialist will bring important insights to the administration of the institution, equal in value to the surgeon's insights. Thus if you value having the one, you should value having the other at the same level. Then, if you must compensate a surgeon at a high level, you must compensate her colleague at the same level.
2
"...I don't understand why the hospital doesn't simply increase the compensation for the pediatrician to match what they are offering the surgeon."
Because the pediatrician is likely willing to work for the regular rate.
Because the pediatrician is likely willing to work for the regular rate.
2
#1- if you wait a couple weeks the FDA will be defunct and you can do whatever you wish without any ethical headaches.
13
Re #1 - If I were diagnosed with early-onset Alzheimers I'd get a second and maybe a third opinion. That's especially important if your doctor is anything but a gerontologist or perhaps a neurologist with sub-specialty of dementia. I also think people with early diagnosis should have the option to seek assisted suicide.
7
On #3.
I don't see anything that says that the doctor is required to take those tasks but rather that there are few takers. According to what the questioner wrote, experience is irrelevant. It may be necessary to raise the pay for that job but not based upon the doctor's specialty or current salary.
That is exactly what equal work for equal pay means. In the past this sort of thinking has almost always meant that women will be paid less, and that just might be what would happen here. Women doctors tend to be in lesser remunerated specialties.
As long as their are no requirements related to experience then you can not ethically offer different pay for the job.
I don't see anything that says that the doctor is required to take those tasks but rather that there are few takers. According to what the questioner wrote, experience is irrelevant. It may be necessary to raise the pay for that job but not based upon the doctor's specialty or current salary.
That is exactly what equal work for equal pay means. In the past this sort of thinking has almost always meant that women will be paid less, and that just might be what would happen here. Women doctors tend to be in lesser remunerated specialties.
As long as their are no requirements related to experience then you can not ethically offer different pay for the job.
9
Re #3. While the surgeons should perhaps be paid somewhat more, if only because of their longer residency training, said compensation should be adjusted to reflect the facts that they are not having to pay malpractice insurance (depending on the state premiums can be > 200K/year for specialty surgeons and OB-GYNs) while pediatrician's premiums are much, much lower. Nor would the surgeon be paying for an office professional or clerical staff during periods of administrative work, during which support staff is paid by the hospital. Yes, the pediatrician would save on such costs too but their staffs are much smaller as well. Serving his/her hospital(s) in some capacity should be an obligation for any medical staff member.
1
When my mom was dying from Alzheimer's, she would get frightened when my brother, father, or I got up to leave the small facility where she lived. I noticed it helped Mom when I said, oh, I'm going to put a chicken on to roast, & I'll be back in a little while. Our responsibility with the dying is to increase their comfort as much as we can, & a small fiction can do just that. Yes, Alzheimer's victims will forget the facts, but the emotional effect of how we leave them after visits lingers far longer. Kindness dictates that we sacrifice our need to feel all upright & pleased with ourselves for being "truthful" in favor of meeting people with dementia where they are & be available to them in ways useful to THEM, not us.
47
Anecdote for #3: IBM once had a project end with no work for their top computer guys. So they (intermediately) assigned them as computer operators on third shift (midn-8am). The computer guys saw inefficiencies in the job streams & optimized them. Now the 3 shift jobs were completed in the first shift! Sometimes the best people (minds) in menial tasks can make great improvements. Maybe the surgeons will make great administrative improvements.
6
Rational answers don't work in my experience. My mother would often anxiously ask when she could see her mother. Finally, I told her that her mother was fine and living with her younger sister, my aunt. Oh, my mother responded, she (my aunt) was always her favorite. From then, a simple reminder of this living arrangement reassured her and we would talk of other things.
Kensington Maryland
Kensington Maryland
22
The kind thing to do for the dementia patient who misses her husband is to give a reassuring answer.
Many years ago I worked with small children who often fretted over where their parents were. They often asked repeatedly "where mommy?" I usually answered that mommy was at a popular local store where children often went with their parents. This always quieted the fretful child because now she had a clear mental picture of where mommy was, and it was a place that was both happy and familiar.
I would tell the patient that her husband was someplace she was familiar with and that she knew her husband enjoyed. I would add "and you'll be together soon." Comforting and, I hope, true.
Many years ago I worked with small children who often fretted over where their parents were. They often asked repeatedly "where mommy?" I usually answered that mommy was at a popular local store where children often went with their parents. This always quieted the fretful child because now she had a clear mental picture of where mommy was, and it was a place that was both happy and familiar.
I would tell the patient that her husband was someplace she was familiar with and that she knew her husband enjoyed. I would add "and you'll be together soon." Comforting and, I hope, true.
18
For #2, the replies thus far indicate that the experience varies and so should the response to the elder person. I can only relay that recently my mother needed to transition out of a rehabilitation center into a skilled nursing facility after a fall. Her home was very important to her, and she had been asking when she could return to it. Once it became clear we could not arrange sufficient coverage in her house, we felt she needed a full opportunity to hear that she could not return to her home and the reasons behind it. Despite having a diagnose of moderate to severe dementia, we found a time when she was best able to to have that discussion (earlier AM worked best before she began to "sunset"). It was an emotional and difficult conversation, but we were rewarded with her understanding that her health and safety were paramount. Moreover, that notion has stuck through our visits in her new environment and she is not fixated on her next move. I would only urge one to consider the circumstances as thoroughly as possible, act in the elder's best interest and sacrifice your own emotions.
23
Re Questions 1 and 2 from my perspective as the husband of a wife who is in long term care for Early Onset Alzheimer's and who volunteered for a clinical study while still able to participate in her medical regime. I see little or no risk in the doctor treating himself and the potential, although probably illusory, of an upside. I would support his decision. The family members will be acting with compassion to their mother and preserving their sanity if they continue to redirect and evade her questions about going home when there is no hope that she can and nothing constructive to be accomplished with the blunt truth.
19
I wholly agree with the author regarding question three. This is not a case of equal pay for equal work. The opportunity costs of the work are clearly different for a pediatrician and a brain surgeon, and their compensation can ethically reflect that.
This is the purpose of negotiations, and a reason why attacking the right to negotiate to close the gender wage gap is misplaced. If I and another candidate are up for a similar job, and the other candidate is willing to do it for less, but the employer really wants me, they should have the right to pay me more to get me to do a job I otherwise wouldn't have done. There is no responsibility to pay the other candidate any more than he or she is willing to accept.
This is the purpose of negotiations, and a reason why attacking the right to negotiate to close the gender wage gap is misplaced. If I and another candidate are up for a similar job, and the other candidate is willing to do it for less, but the employer really wants me, they should have the right to pay me more to get me to do a job I otherwise wouldn't have done. There is no responsibility to pay the other candidate any more than he or she is willing to accept.
2
My 95 yr. old mother-in-law suffers from dementia. Every time we visit her she says that she doesn't know where Bob (my long deceased father-in-law) is & she's worried because he is supposed to take us all to lunch. We just say that he's out playing golf & must have been delayed. I believe it would be cruel to remind her that he will never come back.
36
#1 - There is one overlooked risk of scientists experimenting on themselves: it may encourage others - who have less understanding of the risks - to do the same, or to WANT to do the same and thereby increase demand for treatments that are not yet proven (or proven safe).
#2 - The Ethicist is definitely right here. When someone can't understand the information you're telling them, can't do anything with the information, and the information will only cause pain, the principle should be kindness over truthfulness.
#2 - The Ethicist is definitely right here. When someone can't understand the information you're telling them, can't do anything with the information, and the information will only cause pain, the principle should be kindness over truthfulness.
16
To the doctor in #1: What about having one of your fellow researchers oversee your experiment on yourself? That way, if it succeeds in helping you, you will have acceptable (by peers) documentation of the treatment, and it will thereby be available to others that much sooner.
Good luck.
(P.S.: Dr. Barry Marshall was/is a generous man as well as a brilliant scientist. When I wrote to him nearly 40 years ago with a question about a family member, he replied at length and sent pages of references to support his answers.)
Good luck.
(P.S.: Dr. Barry Marshall was/is a generous man as well as a brilliant scientist. When I wrote to him nearly 40 years ago with a question about a family member, he replied at length and sent pages of references to support his answers.)
16
The "biological materials and intellectual property involved" are not being stolen nor do they deprive the "owners" of any income should the LW use them on him/herself; they would most definitely not "be stolen". I doubt that any "understanding" with the employers included this particular possibility,
Note too, that every "properly constituted human-subjects" review committee" would say "No". 100%. It is dishonest to even suggest that as a real possibility.
The only ethical requirement here *is* that the gene transfer be limited to the experimenter.
However, since this type of experiment *does* include gene transfer of some kind - normal safety procedures require that all subjects be isolated for life or that the transfer not risk the apocalyptic "infect the world", "replication incompetent" scenario you mention. Either this or "no". Everything else you mention is hogwash.
Note too, that every "properly constituted human-subjects" review committee" would say "No". 100%. It is dishonest to even suggest that as a real possibility.
The only ethical requirement here *is* that the gene transfer be limited to the experimenter.
However, since this type of experiment *does* include gene transfer of some kind - normal safety procedures require that all subjects be isolated for life or that the transfer not risk the apocalyptic "infect the world", "replication incompetent" scenario you mention. Either this or "no". Everything else you mention is hogwash.
3
I have trouble with the advice to the third letter writer. It is possible that the hospital as a whole will benefit if all specialities were to have a good understanding of the administrative end.
However, when paying them for admin work based on their previous earnings, how does this differ from paying a person with three kids and a non-working partner more than a single person with no dependants? I have been in the situation where I was offered less than other people doing the same work because I had a spouse who had a good income (this could be guessed from his profession).
I think it would be fairer for the hospital to pay a set compensation and to make it clear in the hiring contract that all doctors would be expected to perform these duties from time to time, and set a schedule. That way everyone could plan for certain periods of reduced income. I don't think the surgeons will starve.
However, when paying them for admin work based on their previous earnings, how does this differ from paying a person with three kids and a non-working partner more than a single person with no dependants? I have been in the situation where I was offered less than other people doing the same work because I had a spouse who had a good income (this could be guessed from his profession).
I think it would be fairer for the hospital to pay a set compensation and to make it clear in the hiring contract that all doctors would be expected to perform these duties from time to time, and set a schedule. That way everyone could plan for certain periods of reduced income. I don't think the surgeons will starve.
19
No they will not starve -- but they probably will not work at that hospital either.
1
Regarding the third question, the real idea of this scenario has to do with opportunity cost - how much are you (as in the higher specialty earner) willing to give up?
It's not really about what wages are fair (this is important, sure but not as realistic) - when dealing with a new contractor or employee the negotiating point only begins at the point at which the job at hand is worth (this is usually financial, but could also deal with workload/fulfillment) more than whatever their status quo is. At a certain wage a job may simply not be worth doing for some. It may not be fair to pay a surgeon more for the same work, but it's not fair for the surgeon to give up more if they don't want to and are qualified to make more, and if you need the surgeons to have that experience, well, their going rate is what it is.
It's not really about what wages are fair (this is important, sure but not as realistic) - when dealing with a new contractor or employee the negotiating point only begins at the point at which the job at hand is worth (this is usually financial, but could also deal with workload/fulfillment) more than whatever their status quo is. At a certain wage a job may simply not be worth doing for some. It may not be fair to pay a surgeon more for the same work, but it's not fair for the surgeon to give up more if they don't want to and are qualified to make more, and if you need the surgeons to have that experience, well, their going rate is what it is.
1
Did older scientist omit an important detail that might help in addressing the question of how big a leap this (geme-transfer?) experiment might be? Did he or she mean that they had found a "cure" that worked in rats or mice (a non-human model of Alzheimer's)? One of the major challenges for progress in this area is the reliance on rodent models for a disease that primarily affects higher order human cognition that is possibly not well-modeled with rodent cognition.
1
I question the assumption that the older scientist would be stealing from his employer. If he leads the lab, he may well fund it too, by bringing in, and renewing outside grants.
18
I disagree with part of the advice you've given the daughter of the senile lady. The lady has asked when she would go home to her husband, and she will forget the answer and ask again. I believe the mother should be told in the clearest terms possible, the answer to her question, just once. She is a human being and she has the right to face her circumstances and to grieve her loss. I do believe that repeating this reality over and over again would be detrimental to daughter and to mother.
4
LW1 - try it on yourself.
If it works, it may provide you with extra years to work on this and other vaccines yourself.
Wishing you good luck.
If it works, it may provide you with extra years to work on this and other vaccines yourself.
Wishing you good luck.
27
One of my favorite stories while working as a recreation therapist is of the elderly lady with dementia in my nursing home whose family decorated her room with a christmas tree, lights, etc. She was one of the happiest patients in the home. Every morning she woke up and thought it was Christmas day!!
53
Anyone dealing with someone with dementia needs to learn what others have learned before--- how to best communicate with someone with the disease. To not educate yourself is to cause much unnecessary misery to oneself and to the patient. Alz.org has much information. Going to a support group if possible.
25
Social workers who work in assisted living environments refer to the solution to the 2nd question as "therapeutic lying". There is no real value to arguing that a persons perception is incorrect. Acknowledging the emotion behind what the person is expressing and helping them to feel less anxiety can be more important than telling the "truth".
23
As a physician, I disagree with your answer to #3.
I am in a high paying specialty as well and have worked in affiliated roles both in practice and for the hospital and done it for far less remuneration because it is the right thing to do! If you want the big bucks stay in the OR.
I was frequently derided by colleagues because I took less money for the work I did. I don't care. I contributed a lot to the community.
I am in a high paying specialty as well and have worked in affiliated roles both in practice and for the hospital and done it for far less remuneration because it is the right thing to do! If you want the big bucks stay in the OR.
I was frequently derided by colleagues because I took less money for the work I did. I don't care. I contributed a lot to the community.
A doctor experimenting on himself is not always an effective impartial observer. Having a base-line would help a bit. He mightn't be able to asses whether the potential cure is accelerating the illness, so he had to involve his personal physician. While early progress varies, we have some reasonable expectations based on past clinical observations. Someone other than the patient himself needs to assess the progress. Other than that, "Thank you for you very kind and generous offer".
Questions from patients in dementia exist to verbalize fear and anxiety. We should provide answers that are consistent from visit to visit. Patients treat time as a continuity with past frequently included in the present, so any reference to change will have to be more vague than we are accustomed to giving. We are there to provide comfort and familiarity, not educate; bringing deadlines into a world where clocks and calendars have less meaning makes things even scarier. "We'll have to look into that." "I don't think it will be ready this afternoon, but I hope it will be fairly soon". "Let's see how things are doing tomorrow (or in a few days)". Years after my mother died, one of her sisters kept asking me how she was doing, and I disliked shocking her with the same news, so I said something like, "Things are ok now." That was the answer she was hoping for and she was able to smile. I think all six sisters had some Alzheimer's - those must be some amazing conversations in the hereafter!
Questions from patients in dementia exist to verbalize fear and anxiety. We should provide answers that are consistent from visit to visit. Patients treat time as a continuity with past frequently included in the present, so any reference to change will have to be more vague than we are accustomed to giving. We are there to provide comfort and familiarity, not educate; bringing deadlines into a world where clocks and calendars have less meaning makes things even scarier. "We'll have to look into that." "I don't think it will be ready this afternoon, but I hope it will be fairly soon". "Let's see how things are doing tomorrow (or in a few days)". Years after my mother died, one of her sisters kept asking me how she was doing, and I disliked shocking her with the same news, so I said something like, "Things are ok now." That was the answer she was hoping for and she was able to smile. I think all six sisters had some Alzheimer's - those must be some amazing conversations in the hereafter!
You are correct about the third query: Doctors, like lawyers, are not a protected class.
The writer is focusing on traditional pharmacological medicine instead of physiological medicine. Therefore, whole argument is limited. In the Alzheimer's research, a large number of researchers, not those with pharmaceutical companies, are focusing on physiological understanding of Alzheimer's. Dr. Dale Bredesen with UCSF and BUCK INSTITUTE is one of them. He has found evidence that Alzheimer's stems from imbalance in nerve cell signaling that is caused by at least 54 dementigens. He and his team are treating patients with mostly lifestyle changes and so far with impressive successes. As his approach is helpful for a large number of people in terms of preventive lifestyle change, I wish his work should be introduced to the general public often.
3
"dimentigens"...Ooh! A new word coined form two other words, thus giving it the aura of authenticity! The doctor referenced has produced a massive study of 10 patients with no particular standards, and reached the lofty conclusion that just following his protocol is the thing to do, and he uses those computer thingys, too. This isn't about patient care; it's about selling books on Amazon.
It turns out, you can get away with describing getting some sleep, oral hygiene, a decent diet, and some exercise and personal attention as a therapeutic milieu, and you can blame some Alzheimer's on sugar in the brain and (you guessed it) gluten. Might as well get on the wheat train while it's still moving, and bring some probiotics with you for lunch....
It turns out, you can get away with describing getting some sleep, oral hygiene, a decent diet, and some exercise and personal attention as a therapeutic milieu, and you can blame some Alzheimer's on sugar in the brain and (you guessed it) gluten. Might as well get on the wheat train while it's still moving, and bring some probiotics with you for lunch....
12
Thank you very much for the information about Dr. Bredesen's findings.
The regime they suggest is one that could enhance anyone's life, as you say. Unfortunately, as we age, it isn't so easy to get seven to eight hours of sleep at night. But most of the recommendations are very doable.
The regime they suggest is one that could enhance anyone's life, as you say. Unfortunately, as we age, it isn't so easy to get seven to eight hours of sleep at night. But most of the recommendations are very doable.
Pharmacological researchers have so far failed. Six out of his ten trial patients could go back to work again. Unfortunately the regiment is very strict and requires constant supervision. However, treatment of illness overall has been moving gradually to a lifestyle change instead of pharmacological solution. On the other hand, many doctors have been dispensing medicines one after another without considering risk to the patients. One example is statin. Many researchers have been reporting statin's risk such as ( 1) possible cause of Alzheimer's as it increases Amyloid plaque, (2) hemorrhage, (3) muscle damage and many others, and secondly except pharmaceutical industry, prestigious medical associations and many drug dispensers, center of research focus has been shifting from cholesterol counts to LDL/HDL oxidation and glycation or small and dense LDLs made from carbs through 'de novo lipogenesis'.
1
Validation Therapy might be a solution for letter writer number 2.
http://www.aplaceformom.com/blog/2-18-16-validation-therapy-for-dementia/
http://www.aplaceformom.com/blog/2-18-16-validation-therapy-for-dementia/
4
People with advanced dementia often have memories, but they live in the present moment. Since they lack the ability to form context, what they express lacks lasting meaning. If you have relatives or loved ones in that condition (and I've had two...so far) you must learn to think in the moment, as they do--even though YOU are aware of their distorted thought processes and THEY are not. Try to give them pleasure in the moment, interest in the moment, and comfort in the moment. And that means lying when the truth would be painful, frightening, disorienting, confusing. Don't hesitate: make the moment better for the dementia-stricken person who cannot possibly benefit from the truth. And remember that even the better moment will be gone in minutes. Nothing sticks; everything disappears. That's the nature of the disease--and it can be your ally in helping your parent, husband, friend, partner calm down and have peace in the moment.
59
i tell my mother, who is well aware that her short term memory is totally gone, that "living in the moment" is something that we all strive to achieve....
4
The 2nd issue is too familiar, but I've had time to adjust to a changing reality with older relatives. It IS demeaning not to be honest with people who are old but have the capacity to understand. But if the person is in their own 'world' or kind of awaking dream, it is cruel to introduce upsetting facts which they are incapable of processing. One challenge is to tune in to THEIR reality- probably inconsistent, requiring attentive listening. It does no one any good to insist that such and such is not true- because for them, it can be vivid reality. There is no "right" - only compassion for their real feelings.
Examples: waking from a nap, my uncle would become frantic, believing he was late to pick up his wife - a scene from 30 years past. He could be calmed if "reminded" that someone else was doing this; she'd be home soon. A friend's mom has gone through stages where she was wondering where her (late) husband was, to expecting her parents (gone decades). Suggesting that they were coming later helped somewhat. The point is to relieve real distress- and gently pull them into some present activity, not to yank them into accepting facts. My own mother is able to ask me to clear up hazy memories - yet insistent about imaginary events which seem to be her attempts to create stories to account for events that make no sense- to fill in her gaps.
Lies? No. Respecting illusions that people with dementia hold is about preserving dignity as far as possible. We all hold a few.
Examples: waking from a nap, my uncle would become frantic, believing he was late to pick up his wife - a scene from 30 years past. He could be calmed if "reminded" that someone else was doing this; she'd be home soon. A friend's mom has gone through stages where she was wondering where her (late) husband was, to expecting her parents (gone decades). Suggesting that they were coming later helped somewhat. The point is to relieve real distress- and gently pull them into some present activity, not to yank them into accepting facts. My own mother is able to ask me to clear up hazy memories - yet insistent about imaginary events which seem to be her attempts to create stories to account for events that make no sense- to fill in her gaps.
Lies? No. Respecting illusions that people with dementia hold is about preserving dignity as far as possible. We all hold a few.
88
Bravo.
4