Lack of reality leads to a reality check

Over the last few weeks have had these thoughts that if my father (dad has dementia/alzheimers) passed away before my mother that we might be able to bring my mother home to live with us, finish out our basement, etc. I understand that this is just the hope-full part of me that wants to hang on to some thought of renewal or future. But then reality of my mother's condition hits me square in the face. We attempted to take my mother out to eat with all of her grandchildren this past week. The plan was to take her out of the memory care facility, go to lunch, come back and then visit with my dad. But, my mother threw a fit, and could not understand why we could not also take my dad. I told my mom that we could not because of his dementia/behavior. She then flatly denied that my father had dementia or alzheimers. Mom basically has lost touch with reality. The LCSW that works with us has been telling me all along that mom's reality checking or degree of reality contact is just not there. Unfortunately it is true. That combined with her history of RX drug addiction, personality issues, depression and anxiety, will most likely make it impossible for her to ever live alone again. It's just a sad reality. My mother might not have dementia but in many ways she is just as sick as my father.

So, that is the story of how my mother (who I love so) has lost touch with reality and at the same time given her son a reality check.

More on Medicine and agitation and Dementia

Alzheimer's disease affects the brain. It destroys brain cells. Loosing ones memory and the ability to reason is the hallmark of Alzheimer's disease. The brain whether we like it or not also regulates emotion and behavior. Essentially our ability to feel starts with the brain. One of the hardest and scariest parts of the whole process, (besides everything else) is the behavioral changes. A person with AD, can begin to behave in very strange and uncharacteristic fashions for themselves. It is bizarre and frightening quite often for family members. As the disease wears on the person with AD looses their ability to self-reflect-to have insight into their own behavior. It is not their fault and if they could they would hate it more than you do- but they can't.
It is also unique in that one day for no apparent reason the behavior can appear quite normal and baseline and it seems everything will be okay. The next day the behavior is strange, odd, bizarre, frightening, maybe hostile, maybe threatening. It is enough to drive a family member or loved one nuts. Yet the AD victim can't help it.
Hence emerges modern medicine. "Why can't the doctor do something?" "Help them doc!"
Keep in mind to this date yours and my Federal Government and its regulating body the FDA The Food and Drug Administration has approved no medication specifically for the treatment of agitation in Alzheimer's disease. Yet in modern society we use meds all the time.
Now I don't want to get all that hate mail, thinking I am pro-meds, "pill-pusher" "doctor does not take the time" "how can they just throw meds at my mother or father, they don't even know him or her" -I know. Believe me I am not pro-meds, I just happen to know the pragmatic realities, expectations and limitations of them because that's what I was trained in. I would rather see anything and everything that can be done other than meds to help the behavior to be more balanced and normal for that person. As family members know, simple reasoning does not always work with the AD victim. -It is not their fault.
As far as the specific meds, sometimes the cholinesterase inhibitors the Aricepts of the world can help the behavior,  sometimes they can actually make it worse.
The are indicated for AD not specifically for the behavior.
Sometimes the antidepressants can help the agitation the Zolofts of the world and sometimes they can make it worse. A person with AD can be depressed, but they can't necessarily tell you. But even if you can't make a clear diagnosis of depression sometimes the antidepressants help agitation. I talked about the atypical antipsychotics in the past. the risperidones of the world. Sometimes they help, sometimes a lot, the government and medicare are all over this with warnings about increased risk of stroke in psychosis with dementia, and the omnipresent diabetes risks.
the benzodiazepines, the Ativan's of the world sometimes help, and sometimes they disinhibit and make the person worse. They are cheap, addicting-not always a worry in dementia patients, and the primary care world loves them.
Then there are the Antiepileptic meds, the Depakotes of the world. Sometimes they can help a lot in low dose, but they can also cause worsening effects with sedation for example.
It is often a balance of calming the behavior without sedating the patient too much. Sedation seems to aggravate the already declining cognition and ability to think.
Ask what your doctor is prescribing and why. If you think your loved one needs meds for agitated behavior, ask the doc which med and why.
Low and slow is the key. It is an art and a science. It takes a little finesse and knowledge base, and in medicine that like anything else is variable. The meds are not going to work miracles, and your doc is probably not stupid or holding out in the best med for some ulterior motive. They are probably adequate and average at least. But if you don't trust her or him, then get another one. If you are only allowed to see a mid-level prescriber, such as a nurse practitioner or a physician assistant, and you would rather have your loved one see someone who went to medical school and had years of residency training then ask for one.
Remember the agitation is not the AD victims fault. Think of the brain as a stoplight at a major intersection 12 lane intersection. Then a storm wipes out the power. Everyone has to get to work. There is always the asshole who runs through the intersection, and then many more who are uncertain or scared to proceed.  It is chaotic.
If you ever rented a truck, say from Penske or U-Haul they have a governor on the engine, you can't go past 65, conversely it may be tough to get up a hill. The brain is the governor of behavior. AD is the storm that wipes out the traffic light, AD removes the governor on the truck and you got a run away truck. It is not the victims fault.

Radio Show "Coping With Caregiving"

I will be in the internet radio show 
   "Coping With Caregiving" Saturday 3:15 pacific. 6:15 Eastern. The show is hosted by Jacqueline Marcel whose father had Alzheimer's. she wrote a book about it called "Elder Rage."which you can find a link to at the radio show site.
 Here is a list of the guests
JUNE 26, 2010 3-4 PM PACIFIC TIME: 
Bill Dyess (Gelbwaks, Long Term Care Insurance), 
Joe Sivak, MD ('When Can I Go Home?'), 
Carolyn Rosenblatt ('The Boomer's Guide to Aging Parents'), 
Chris Tatevosian ('Life Interrupted: It's Not All About Me'). 
click on the link and follow the directions which are pretty straight- forward  Radio Show

On Being a Psychiatrist

Here is a little story I wrote, depicting some musings on being a psychiatrist. I wrote it a couple years ago, for a Minnesota Medical Association little writing contest. They did not see it as a winner and therefore not fit to print. If you still wear Birkenstocks, raise Llamas, vote a certain way, and present a certain, non-disquieting view of medical practice, well that may make for a better and potential printable winner, so that rules me out. We do like our realities to be in a certain way up here. The stuff we know:  we know The stuff we don't know: does not exist. Its mostly the stuff we don't want to know: does that exist?

"ON BEING A PSYCHIATRIST" 

Joseph J. Sivak MD

            "The shiny brown leather couch glistens in the late afternoon sunlight. The couch envelops the supine patient. A bespectacled gray-bearded man in a brown herringbone tweed three-piece suit sits in a cherry-spooled rocking chair a few feet behind the patient, frantically taking notes. The psychiatrist directs the patient, “Tell me how you feel about that.”

            The patient a perpetually shy woman of about forty years shifts on the couch and obsessively twirls her pearl necklace and chews on the white beads, as a grandfather clock on the other side of the room seems to tick more loudly than ever. The patient struggles with her analysis. The psychiatrist pulls out a gold-chained pocket watch from his vest. “Hmm…times up for today. See you tomorrow at four.”

            The patient hastily rises from the couch, walks out of the room and pays her bill to the receptionist, handing her cash from her purse. It is a bill for services to have ones head shrunk, to become actualized.

This archetypal image has little resemblance to the modern day twenty first century practice of psychiatry. Hollywood holds dearly to this quintessential image, as does a vast portion of society. It is a romantic, classic, yet profoundly irrelevant image. In fact I don’t even have a couch in my office, let alone a grandfather clock. I do own a three-piece suit somewhere, but have not worn it since the eighties.

The patient scowls across the room at the harried doctor. The doctor has fifteen minutes with the patient and unfortunately has three people waiting in the crowded waiting room and he is already 45 minutes behind. The patient barks, “You better give me some klonopin or adderall dude, cause if you don’t, I don’t know what’s gonna happen. I might violate my probation and I’m not going back to prison. I’m gonna hurt somebody if you don’t give it to me dude.” The patient is agitated and twirls the chain on his wallet in one hand and beats a cell phone against his leg with the other.  The psychiatrist hears someone in the waiting room loudly swearing at the receptionist for having to wait so long.

This scene may be somewhat more realistic for many modern day psychiatrists, but not as classically romantic as Hollywood wishes for.  When I was in medical school and I chose a residency in psychiatry, I still held on to a bit of the classic archetypal image. The image implied that the patient actually wanted to be there, and happily paid their bill. I liked the idea where the patient developed new insights into their unconscious and became healthier. The idea that almost everything had a meaning and was precisely interpreted was most appealing.

Many myths and misnomers abound in regard to the modern day practice of psychiatry. Many people believe that psychiatrists are extremely wealthy. They stare in disbelief during conversation, when I advise them that psychiatry is the second lowest paid specialty in medicine. They are shocked when I advise them that most medical students don’t choose a residency in psychiatry because there is relatively little pay compared to other specialties. They are dumbfounded when I advise them that 90% of my patients don’t pay in cash or check or credit card and that the vast majority of my patients don’t pay anything at all for their psychiatric care.  It seems that it is much simpler to hold on to the classic romantic view of psychiatry.

Another popularly held myth is that most psychiatrists are a bit crazy and simply go into psychiatry to figure themselves out.  Sometimes I ascribe to that view, but I can honestly say that the rate of craziness is probably not any higher in the field, than say surgery, or the legal world or carpentry or any other line of work. The psychiatrist just hangs around professed psychopathology all day. But you can’t really catch mental illness per say in the same way you catch a cold.  Most psychiatrists are actually rather humane, empathic individuals that chose the profession because they were interested in truly helping their fellow human being.

Ideally, in medical school, I felt psychiatry may have bridged the gap between the art and the science of medicine. It starts at an infinitely tiny point, namely the human brain and explodes into every scholarly domain. It touches philosophy, sociology, art, history, biology, chemistry, anthropology, linguistics and psychology to name a few. 

            After practicing for fifteen years, it is so very different from what I idealized back when three piece suits where still in style. The pressure like most areas of medicine nowadays can be ungodly. Idiosyncratic pressures in the field are abundant. For example psychiatry is the only field where one might be sued for malpractice, for failing to protect someone you never knew existed.  Depending on circumstance, the psychiatrist may be held liable if their patient harms someone else. The degree of violence in society is astounding and dictates the scope of many psychiatric practices in America today. Violence often stems directly from early abuse and neglect and a lack of human regard and connectedness.  A large percentage of my patients grew up around violence and abuse with very little familial nurturance. Simply having no other option, be it determined by nurture or nature, they continue to perpetuate the cycle and are often predisposed to anger and impulse problems. Unfortunately for some the psychiatrist often becomes the displaced object of that anger. Every year in this country a significant number of psychiatrists are assaulted and one or two actually murdered by their patients. The threat rivals that of a busy emergency department, but the psychiatrist’s office is usually not equipped with armed security, unlike a busy intercity ED.

            It is often common for a patient to visit a psychiatrist’s office for some reason other than coming to get treatment for an illness. This was something never taught much in training. Reasons range from: staying out of jail, to getting ones children back from social services, to getting disability income, to improving their divorce outcome, or to keep their job.  Often when there is some primary reason for being there other than getting treatment, the person may feel everyone else, including the psychiatrist has a problem.  Pulling the psychiatrist out of the role of physician and into a role of manipulating ones social environment can often have little to do with true patient advocacy or treating ones mental illness and making the patient healthier.

            Another strongly ascribed to fallacy is that psychiatrists are all just “pill-pushers”.  The truth of the matter is that most medications can and do eliminate psychiatric symptoms and alleviate suffering, but in 2008 most medications do not essentially cure or heal mental illness. There are fascinating breakthroughs in the understanding of the plasticity of the human brain and discoveries of such substances as brain derived neurotropic factor. The mapping of the human genome also has profound implications for psychiatry, but we are still hard pressed to prescribe a medication that heals psychological wounds and cures psychopathology. Yet in our fast–food, Madison Avenue Based society there is much pressure and unrealistic expectation to simply prescribe a “happy pill” or a “normal pill”.    

            At this point in time till proven otherwise, the healing component directly relates to and takes place in the relationship between the patient and the doctor. The psychiatrist often becomes the only safe and stabilizing figure in a patient’s otherwise chaotic, entropic life. The doctor often becomes a nonjudgmental empathic entity that the patient can depend upon. In this sense there is almost a re-parenting process that takes place, in the transformation towards psychological healing. Indeed some strictly biological psychiatrists would scoff at this idea, while at the other end of the spectrum non-physician psychotherapists often believe that the psychiatrist does not even talk to their patient in lieu of simply pulling out the prescription pad and begin scribbling on it. Most good psychiatrists, the ones that actually take care of patients all day know better. The medication prescription often takes on more than biological implications. It takes on metaphorical proportions as a symbol of the most ancient of archetypes the physician patient relationship and the healing that takes place.

            The ultimate loss of a patient comes in the form of suicide. When a patient walks out the door of the office, the doctor can never be 100% certain that a patient will be safe from harming themselves. Even when the psychiatrist does everything within their clinical capabilities, they can not always save a patient from themselves. This is in the context that depending on the practice, a psychiatrist may treat hundreds if not thousands of patients a year who are chronically suicidal.

            The academic challenge can be more elusive. It is true that there is little that surprises or necessarily intrigues me about human behavior anymore. Another Hollywood misnomer is that the average psychiatrist finds human psychological aberrations so very interesting. Indeed at a dinner party when the conversation turns to some strange behavior in someone’s uncle, all eyes turn to the psychiatrist for a response filled with alacrity to hear more. I suspect this is true for the psychiatrist that sees three patients a week. Most see many more. Many psychiatrists would rather discuss baseball or Beethoven or bookstores when away from work.

It is true that I have heard tens of thousands of narrative life stories filled with anguish, terror and pain, and after one or two pieces of information I can usually fill in the rest quite accurately in the narrative. This can lead to a cynical attitude in the psychiatrist, or conversely it can be used as a gift to help patients feel cared about and understood. The understanding comes from a perception of an uncanny clairvoyance on the part of the doctor and empathy for the patient by making the patient feel that their story is unique. When they are sitting in the office, their life story is the only thing that matters to the doctor.

Over the years it has also become apparent to me that the mentally ill can not always speak for themselves or stand up for themselves. The current health care climate continues to perpetuate this phenomenon. There is a greater responsibility than ever for the psychiatrist to advocate and help fight the stigma of mental illness. This can only help each of our individual patients that struggle with these issues.

So from that ideal image I conjured up almost 20 years ago to today, my perceptions have changed a bit. I felt the job would be energizing if not invigorating. What I have learned is that the human psyche and spirit only has a certain amount of positive energy to give and so much negative energy it can absorb. The end result can sometimes be a daily mental and physical exhaustion.  It is a job in which one is obligated to give 100% of their spirit and psychological energy in treating their fellow human beings. The real joy comes from the fact that we have a gift in the responsibility to give and to care for our fellow human being. This joy touches not just psychiatry but all physicians. Despite the pragmatic realities of health care and our technological fast-paced world, and the continued reduction of human connectedness in society, the ancient archetype of healer will remain as long as human beings remain.

I know of nothing else that I could do now. It is in my blood and in my soul. Perhaps the joy also comes from the exhaustion of giving ones positive goodness and energy in the name of healing on a constant basis in the physician’s daily professional life. Anything short of that and we should not call ourselves a physician. Perhaps the joy of giving is actually invigorating. Perhaps that gray-bearded man in the tweed suit with the pocket watch felt that exhaustion or maybe that joy."

                                             ©2008 Joseph J. Sivak MD

Pending Book Tour and other Musings

Book tour in Florida next week. I will be  doing a reading and signing and talking about the book and all about AD next week. It's weird but I was trying to figure out which sample pages of the book I would read for the book signing. I read a part about some mean laughing on-lookers at my mother's inappropriate social behavior, when I took her to a restaurant when I was seventeen, that one seemed okay. I guess it covers some of those universal concepts of Alzheimer's family members, the ignorance of the fellow human being manifesting as mean-spiritedness-

but then I read one about a patient I had, whose wife had AD. It was quite a few years ago, I actually got choked up reading it. I have had thousands of scenarios like that. You don't get to get choked up as a doctor-ever, no matter how much it goes against your human nature. This is especially true in psychiatry. I guess that is one of the reasons so many people hate psychiatrists- shrinks. I spose oncologists get to cry with their cancer patients and that is cool, but psychiatrist don't get to. 

I know crappy therapists get to cry with and hug their patients, but it does not work in the end, It is boundary less. It looks coll on TV and for Hollywood. But it is not the right thing to do. You get to convey compassion and empathy without crying with your patient, most psychs don't get good at that, easy to throw meds at people. Part of the reason psychiatrists are seen as such heartless bastards. 

So why don't you get to be emotional?  Well it may seem kind and sensitive, but in the end, the patient is not going to know where they and you start and stop, it conveys a pseudo-trust, but ultimately the patient can't trust you, I mean your affect (emotions) will be as sad and anxious and uncertain as theirs. Unconsciously the patient thinks they have to take care of the therapist or doctor. The patient does not feel safe, it feels out of control, for them.  They don't teach boundaries so well anymore, in fact you have to work at it to find good psychotherapy training in this day and age.  Oh and shared experience is not the same as empathy. That is a toughy for most people to get. The ultimate sign of a good doctor, conveying empathy and positive regard to your patient without loosing your emotions and boundaries. 

Yep I hear 200 tragic, painful, anger-provoking, tear-jerking stories a month. you get to be sort of an emotional factory worker, an empathy machine, cause it is the right thing to do. You owe 1,000%, you took an oath, and people depend on you with their lives.

Anyway I am amazed as I read parts of this book I wrote, some of it years before and can still become choked up. 

The Helplessness of Alzheimer's

The process of living through Alzheimer's disease in a loved one is essentially an emotional prison. You are stuck behind the walls of helplessness. You can't stop the disease from progressing, you can't reverse it, you can't cure it. you have no control of the situation. You are involved  very passively and helplessly in a process. Sort of like being caught in a tornado, and waiting for the storm to end, wondering how much destruction will be there, and if you will even make it, and of course in the middle of the storm you are not sure it will ever end.

Prison, you freedom, your control is taken away. It leads to anger and frustration, we often end up lashing out at those whom are closest to us, the guilt leads to more anger. 

You remember the loved one in better times and you want those times back, but you can't have them. People that have not experienced it feel bad or sorry, they think it is terrible, but you feel a wall between you and them. That is what the disease does.

It is diabolical, one of the worst things to experience, in our modern society, the disease is a machine that is non-stoppable, it isolates a person, physically and emotionally, it alienates siblings and family members, it should bring families closer, but it usually does not do that, it seems to conquer and divide. Every family member goes through the living grief in their own unique way. 

That is all part of the Alzheimer's process. We hang on every hope, the media exploits, just it doing their job, with reports of breakthroughs, but the fact of the matter is the efforts to work together and conquer the disease are quite fragmented. The disease conquers and divides. It is isolating. 

The great non-profits of the world, do their best: missions, always missions, conquer, cure, stamp out, stop the diabolical killer. Walks, fundraisers, see and be seen. Stop the disease. Remember all the tax status, non-profits have to balance budgets, survive, pay salaries, send press releases, go on with the mission. sometimes the mission of the non-profit is unofficially to survive, legitimized behind the official altruistic well meaning MISSION. 

We must be doing something wrong, or it just not that important, how is it that all these public sector and private non-profits, researchers, doctors, clinicians, everyone, can not simply come together and get it done? Lots of little worlds, fragmentation's, fighting for grant money and publication, notoriety etc etc, can't come together? Fragmentation. The disease conquers and divides. The helplessness of Alzheimer's. 

Does anyone who has not lived through it, really understand that forbidden feeling we all have? Hating the victim, and constantly having to remind ourselves we hate the disease and not the victim? 

Worse yet, wanting it to be over, wishing, wanting, hoping the person will die, since it is so awful they are suffering, we want it over. Then we remember our loved on and who they were before the disease, and we are overwhelmed with guilt,-the living grief.. My God no wonder there are so many health problems, and depression in caregivers and family members. What can that kind of stress do to the immune system, the bodies resilience?  

Sadly with what has happened to our health care, and honest to God where it is headed, I am so worried about the lack of honor and dignity placed on our aging population. Euthanasia may take center stage, and the media and politics continue to color our collective thinking. Well since we can't beat the killer lets join it.- Wrong direction to go in, I know it, I promise.

How did we essentially conquer AIDS in 25 years? Were we just lucky? Better money, Better resources? More important people had it? What is AD trying to tell us about ourselves as a society? 

Is there a way to truly work together, to come together, to conquer this killer? Right now there is something wrong with the paradigm. So many self interests hiding behind the mission. Why is it so fragmented? It does not help any that we are more narcissistic and youth-worshiping as a society than ever, with absolutely no attention span and completely aggrandizing and novelty seeking. Are we redefining Altruism? At this point it seems you can't officially be altruistic if you don't have the correct tax-status. fight each other and cut the throat of others for the money, for the grant. for the publication. For the recognition. It seems we are pretty screwed up in our priorities and how we are going about this. Perhaps it should be a law that every American has to adopt a AD victim or an AD family, for even a day, an hour. 

Maybe all the Alzheimer's efforts should be mandated to poll their resources. no fragmentation. Except we all know where that would go, more bureaucracy, and power struggles for control, and in the end somebody a few making money.

Well Doc Here I am again.

You have nagged me to post again. So I decided to post a post that my wife posted on my blog. Is that toooo many posts. She is my main caregiver and since your blog is more to that arena, I thought it would be ok. But notice her post is not 42 paragraphs like some people we know. Love You Man.

Joe posted a few weeks ago about the fact that we have had some difficulity. He has had some issues and yes I was hurt by them. But in all fairness I guess I am to blame too. As you know he can still find his way around the computer and sometimes it gets him and others into trouble. So as a caregiver and as a spouse I am going to say that we need to ask questions when our other half is doing something that we are not sure of. We need to check the bank statements and credit card statements just to make sure there are no charges there that we do not know about. $10 here and there really add up. Also just like we do with our children we need to know who they are talking to. Whether on the phone or on the computer. So I am sure that we will have a few more arguments about how we nag and are trying to control things but, if we don't damage can be done that can not be forgiven or forgotten. Fortunately we are working on our end. So do not be surprised when he writes that I am being a nag and not liking me or others very much. We do it out of love.

Pay Attention to what is going on around the person you care for.

Lynn