Lighthouses....Metaphor or cool places to visit?

There are many personal memoirs about the Alzheimer's Journey. The journey is sometimes so painful and protracted and passionately dismal, that we must as caregivers often resort to metaphor to describe it. Simply meaning the experience is so beyond comprehension, sometimes words can not adequately convey the emotional intensity, regardless of how gifted a writer may be

Over the years I haves taken to lighthouses. I grew up on Lake Erie and now live just a few blocks from Lake Superior. I even did my residency training in Rochester, NY which is only a few miles from Lake Ontario. About 85 percent of my life has been spent living near the Great Lakes. If you count the Delaware River, and Puget Sound then 99 percent of my life has been spent domiciled near great water. Maybe that's why lighthouses are agreeable.

The Alzheimer's journey is described in reference to storms, tornadoes, clouds, ships adrift at sea, the darkness, the monster, the beast, the fire, and the burning embers to name just of few of many. I like the lighthouse reference.

My mother passed away from AD over 22 years ago. It seems like forever some days and other days it does not feel so long ago. A lighthouse is a beacon that guides us through the sea of life. Sometimes it is calm and sometimes it is ungodly stormy. My mother strength and energy and spirit, what she instilled in me is like a timeless guiding beacon, a lighthouse.

It runs deeper than that. Lighthouses are now automated and relatively speaking of historical note only. We have all kinds of aids to navigation now that supersede lighthouses function, but some are still functional. The ones that operate these days seem to be respected and revered by mariners, bringing a sense of comfort when visible, despite all the technological advances in maritime navigation.

I love the stories of the old light keepers who kept the gas lamp going, before automation kicked in. Sometime the keeper and often their family would be very isolated for months and have to trudge up flights of winding stairs, sometimes every three hours, 24-7, almost all year. It was profound dedication to maintain the lamp. In some way The dedication is not unlike the endless devotion we see in caregivers taking care of their loved one with AD.

My wife and I have actually visited a few lighthouses, where you can actually stay overnight in the old light keepers quarters. Two Harbors, Lighthouse, in Two Harbors MN, not far from Duluth, and Whitefish Point, in Michigan, which houses the Bell from the famous Edmund Fitzgerald, (this was the safe harbor the Fitz almost made it to in 1975, before it was lost). Most recently we stayed at Sand Hills Light on the upper Peninsula of Michigan. The history and the energy is extremely intense at these lighthouses.

If you ever have the time, and are need of a break then try to visit a light. The storms they have guided mariners through can be deadly, but there is nothing sinister mean or nefarious about old original lighthouses. They are timeless and truly are a beacon of hope.

Life-Death.................PARENTING

They gave us life, everyone of course has a mother and father, and without them we would not be on this earth. When I was in my first year of residency training back at St Vincent’s Health Center in Erie PA, in 1989 doing a year of family medicine, I went through a basic existential quandary. We had to be on-call every third night which meant basically working for about 36 hours straight. The following is kind of an intuitive concept but it got me thinking back then.

You are born alone and you die alone. No kidding right? Well it hit me in a new way in 1989, because one of the duties of the 1st year intern was to do a “baby check” and exam on all the babies that were born in the middle of the night by C-Section delivery. As I would shuffle off to the nursery and examine the new life sometimes less than an hour or two in this world, I would realize how alone that new life was at that moment. What would this helpless, sweet infant’s little life be like? How would the world treat them? They would seem so alone as they would be separated initially for awhile from their mother in the nursery. No more safety of the uterus and the calming gush of the amniotic fluid, No way of turning back now. Every second this brand new life was moving forward towards the end of their life. In ten or twenty or sixty or eighty years, they would again be alone one day just as they entered the world, in some way their sweet little life would move on out of the world.

Another job of the intern was to pronounce those that expired in the middle of the night, “dead”, notify the attending, write a chart note, no heartbeat no breath sounds, etc, death certificate… plenty of responsibilities. These would typically be individuals who had a signed order that the patient’s wishes and or family (if any) was that the status was to be a “DNR’, do not resuscitate, if and when that point came. (No airway or ventilator, no defibrillator-electric shocks paddles no epinephrine), no extraordinary medical means to keep the patient alive. You had to call the attending physician and sometimes alert the family, depending on if there was a next of kin. Most people that die in the middle of the night in the hospital were older in their 70’s or eighties, and they were almost always alone.

My beeper would go off, the unit nurse on the phone, “could you come down and pronounce Mr. or Mrs ….. no breath sounds no pulse………” the intern got to make sure the person was really dead by examining the patient and making the final call.

Invariably it would seem I would get a call to pronounce someone dead right after I had returned to the on-call room, after doing a new baby exam. So I saw these new babies and then these very alone elderly human beings that lived on this earth for seventy or eighty years now having left the world. It was sort of mind-bending to think that this eighty-year old with metastic lung cancer was once a sweet and pure innocent little infant. Who had cared about them in this world? What did they contribute to humanity. Did anyone care? Who remembered? It was sad. Conversely I would fast forward from that infant and try to fathom that some day seventy or eighty years from now they would be lying in some hospital bed and some 26 year old intern would listen with futility for a heartbeat.

The cyclic nature of life hit me in a new way. Granted this whole existential process was taking place barely two years after my mother had died from AD. (My father had died when I was sixteen: 11 years before my internship.)

It usually hit me in the middle of the night I would stand at the window of the on-call room and wait for the sun to rise and the world to wake up. Every day people would start their busy lives and run to work. The day and life would start all over again. Every day, every person on earth was marching a little bit closer to the end. I would struggle with my Catholic faith that I was raised in, and question the idea of a soul. It was so cyclic, with a beginning and an end; we were just like all other creature in the universe. I had dissected a few cadavers and held human brains in my hands in Neuroanaotmy in medical school. We as humans just had big old cerebral cortices, and could think about our thoughts, unlike other animals with smaller brains. We had opposable thumbs and cutlery and speech and written communication. But was that it?

The issues of parenting with regard to Alzheimer’s disease is also very cyclic . As infants and young children, our parents or someone in some adult fashion raised us, for better or worse. My mother was diagnosed when I was seventeen, by all standards now that I am 47, looking back, I was just a kid. I had five older siblings living through the same struggle but my oldest brother was 35. By all standards in my opinion now he was also pretty young.

Now I read the blogs and see kids as young as I was who are dealing with Alzheimer’s in a parent, although usually at that age it is a grandparent.

Many people who are now around my age of 47 are currently dealing with the disease in a parent. One of the most baffling parts is the shift of an independent human being whom many people still regarded as the smartest and strongest person they knew, now becoming more and more helpless and unable to care for themselves.

That ancient parent child role shifts, it moves full circle regardless of how old one is. We miss going to that parent for wisdom or strength or reassurance. It does not matter if one has had their parent for seventeen or seventy years, people want their Mom or Dad back.

In 2009, we move in our society faster than ever. It is an on-demand society. We are less connected as communities than ever. Everything is virtual now. With a point and click we have copious amounts of information on any subject we want. We do more, accomplish more, and the disease in a loved one forces us to slow down to take stock. Compassion is not an “on-demand” concept, it takes time. So does grieving. There are so many issues to deal with: driving, finances, wills, nursing homes, a spouse whom may not be as understanding, perhaps because his or her parents are healthy. Throw in another concept: the so called “sandwich generation”. You are trying to raise kids; academics, soccer practice, ballet, SAT’s violin lessons, homework etc become time consuming. In addition to that, your own parental support is moving towards being a helpless infant again. It breeds resentment, frustration, anger, but compassion, love, strength you didn’t know you had and a need to slow it down a little. a realization dawns perhaps again that life is pretty transient and fragile.

Since we do seem to be more disconnected as families (everyone is busy) and communities in this day and age, with the speed of electronics and the fact that we are more mobile than ever, we are probably in general more demanding and controlling as a society and as people than ever before. The pace demands it. We demand information and help from the doctor and from the health professionals. We get frustrated and angry because “the doctor is not doing more” or the “nurse practitioner won’t tell us anything” we demand the best for our parent. However for the most part, at this point in time, AD is something that we in the end can’t control.

Of course you must die from something. I am not saying AD is a worse death than say coronary artery disease, or multiple myeloma, all disease is bad. Given the nature that AD robs a persons mind and personality and often does so at an excruciatingly slow pace, the experience makes the family member and caregiver feel that universal isolation, that “I am alone”, “no one understand what I am going through”. It is hard to rationalize at those moments that 5 million people are having those same feelings. It is one of those nasty little AD stabs.

You are not alone and it is not fair. Accepting those two notions moves people a long way psychologically in dealing with this robber of life. We just want our Mom or Dad back.

GRIEF................experts

Typically we associate grief with the death of someone. Liz Kubler-Ross gave us our five stages: denial, anger, bargaining, depression, acceptance.-or some facsimile thereof. . Now it is basic High School senior year-college prep psychology, but interesting the first time you learn about it. There are all kinds of death societies out there and all kinds of major grief EXPERTS.

Like what the hell makes a person a grief expert? Is it Someone who has had a whole bunch of first degree relatives die? If so I'm in. Is it someone who volunteers at a bunch of grief support groups? I guess I have done that too.
Is it someone who majored in Thanatology- the study of death. Somone who write lots of papers about it, Lots of travel to conferences and a whole bunch of clandestine narcissism in that low key empathy oozing.......(" I'm a grief and loss expert and I'm so so busy just got back from New Zealand and now I'm on my way to Germany to present at another grief conference).... Kind of way?
busy busy busy. You see the same thing in psychological trauma, lots of experts. Busy busy busy experts. I guess I have presented at a few conferences over the years.

I used to volunteer with the American Red Cross Years ago, I used to volunteer with various agencies around the country in an area that called Critical Incident Stress Debriefing. I think doing so much work in trauma and disaster was a metaphor for living through my mothers Alzheimer's. Disaster experts like to classify the psychological effects of disaster into various phases. shock, honeymoon, disillusionment and recovery- or some variation thereof. Lots of experts have said the same thing in different ways over the years. Basically if you have volunteered at more than one disaster you may get to call yourself an expert. You can start your own society and certification even. Lots of groups spring up.

Maybe Alzheimer's grief is like any other grief. We all grieve death in different ways. The pain and loss is universal. Depending on ones own ego strength every person copes in different ways. General mantra is you have to talk about it. You have to get through it. If you don't process it, will come back to bite you. So say the grief EXPERTS. Pretty darn easy to qualify and quantify grief right? Maybe not. The scientific data is astoundingly sparce. Perhaps that is why there are so many experts in the field. Pretty easy to validate something becouse it feels good, sounds right or seems intuitive. Believe me, I have even tried myself , see the US copyright office and my 1996 copyright on "Parental Rating Scale for Childhood Grief" Pretty sad I felt compelled to copyright something like that, must have been hanging around a lot of experts in a soft science. But it is all a process. I guess a lot of arrogance abounds when there are a lot of experts in a field. I still think it is that "busy busy I'm indispensible" clandestine narcissism abounding in the field.

Hence the term resiliency. Especially in kids. I always hated that word. We all grieve in different ways and at different paces. What I have learned over the years in hearing one horrible story of pain, loss, trauma abuse adversity etc sometimes 50 a week, , is that grief is a part of life. We revisit grief at different points in our lifetime. There is acute grief and then we go on ,one way or another. Sometimes things in life bring back acute stages and feelings of grief. New losses bring up old losses. You never really get over a significant loss. It changes you. The world changes. A few years ago Nietzsche used to be really popular. Nihilistic attitudes among the low key clandestine intellectual narcissist. Fred said, "What does not kill me makes me stronger." Not so sure on that. We get experience and wisdom, we call on it. when we confront our new losses. But lets face it loss after loss, we don;t feel stronger. Having a loved one with AD is a day to day loss after loss, maybe you get stronger and maybe you just go on. The concept of resiliency is trendy in the trauma and grief world, lots of experts and buzzwords now. We make ourselves feel better by discussing resiliency of the human spirit. Any caregiver living taking care of a person with AD, is an expert I think. An expert in pain and isolation, and expert in selflessness, maybe by default, but none the less an expert.

Alzheimer's is a living death, except we are too busy to grieve when we live through it. Moreover the isolative nature of being a caregiver further impedes any healthy grief process. As a caregiver, you must go on. Maybe you are stronger for it, maybe you are resilient, maybe you learn from it, you dig deep inside yourself for strength you did not know you had, You go on. You are resilient, but it sure does not make it feel any better.

So dear caregiver, no one can tell you how to grieve it day to day. But whatever it is to you: you will grieve. It is not right or wrong, it is human, and there are no bad grief feelings, maybe painful but not sinister. It does make sense to try to let people in, if only to mitigate the horrible isolation. Everyone trying to help you, (if you are lucky to have somone trying to help) is well meaning in one way or another. ( Even if they have more grief than you and they are trying to work it out through you. Grief support is good, use the template but make it yours. If you can talk about it, do it, if you can't, you are not doing it wrong, it's simply where you need to be. Keep doing your best. It IS good enough. Some days are sunny and some are cloudy. You will make it.

WINDOWS..........................

.....................Sometimes we get so caught up in the disease in our loved ones with AD that we forget day to day that those who are afflicted are still a person, a human being with feelings. A person who knew us and loved us, maybe someone who took care of us and made us a priority in their life. This is often the case for primary caregivers. If the AD family member progresses far enough along through the illness to the late stages, they inevitably will not seem to know us anymore, or even know who they are or where they are. The progression through the stages may last 5 years and upwards to 20 years depending on many factors, like when the diagnosis was made etc. A "Window" is when those cutrains are open and the light shines through, usually later in the disease when the victim has reached advnced stages and we do not know them as they were once as our mother or father, husband, grandmother. We loose that time in the day to day struggle, but then suddenly, the light comes through, and the fresh air is let in, a little piece of that person "busts" throughthe curtains of that diabolic disease process. I can give you an example in my own mother. She was diagnosed in 1979 with AD, by 1986, she did not really know me very well anymore. She had progressed from communicating verbally to only grunts and moans. (The reverse process of languege acquisition we see in an infant. She would look at me blankly, trying to recognize me, struggleing in her soul to capture the essence of herself; her essence as my mother. In 1986 in my second year of medical school, I was back visiting her in the nursing home in Cleveland. I had not seen her in about three months. She had not spoken a clear word in many months, and had not recognized me in what seemed to be eternity. I sat by her bedside for about a half hour, and held her hand. I talked to her about medical school, and told her that I was doing ok. She did not verbally communicate back to me, but yet she held my hand. After awhile, I decided it was time to go. I kissed her goodbye and said, "By Ma, I love you.....I will see you in a couple day, before I go back to school." I got up to leave and with my head down, slowly shuffled towards the door of her room. All of a sudden I heard her say, "Bye honey I love you." It came out of nowhere. Her words as clear as the sunshine. She was still there. She had not spoken a word clearly in perhaps a year. She let me know she was still there. That iwas about the last time I ever heard her say anything clearly. She died about a year later. That 'window' gave me hope to carry on, yet it made me miss her as much as ever. I consider those windows a gift to any caregiver.

Diagnosed more often than ever ........why?

This brings up several issues. The diagnosis and awareness of the disorder, are more prominent than ever. Why is that? Old Doc Alzheimer a psychiatrist and neuropathologist back in Germany discovered it back around 1906. Why was it for the first half of the 20th century no one ever seemed to have heard of the disorder? We are easily living longer than ever in America, due to advancements in health care. Aging increases the risk of developing AD. Nuff said?Back when I was young in the 1970's I used to hear about someone being "senile" or having "hardening of the arteries of the brain" perhaps many of those people had AD. There really was no treatment. When my mother was diagnosed in 1979 there was still no treatment. It started to be diagnosed more and more, in the 1980's, as we were living longer life spans.
What else happened? In 1980 the Alzheimer's Disease and Related Disorders Association incorporated. The NIH kicked a whole bunch of money into AD research (something like 13 million). President Reagan designated the first AD awareness week in 1982. I can't say exactly why and how all that happened then,, (ironic since Pres Reagan developed AD). So the drugs to treat AD emerged in the 1990's. (supply and demand?) Drug companies social responsibility? The problem is all of the meds developed in the last 20 years or so don't heal or cure the disease, they simply slow the progression rate in many victims. AND they work best when the disease is treated in the early stages. Early diagnosis became essential if you wanted the optimal treatment. With that comes a whole continuum of how aggressive a doctor and a family wants to treat AD, since currently it will kill you anyway. A new degree of apathy developed, now we could not ignore it of look the other way. Once we knew it was there, could we sort of ignore it as health care professionals since we can't really cure it yet? This is a common phenomenon that many families go through now.Personally speaking I would have accepted any treatment in 1979 to slow down the illness in my mother. Now of course if we are politically correct as many of us Americans pretend to be, we must passionately vilify drug companies, however the awareness has increased and let's face it, Direct to consumer Advertising by drug companies marketing their drug sure has increased the momentum for awareness raising. Incidentally my office is not as cool as the one on the Aricept commercial, but then again I'm no actor.........raising awareness is inherantly good.

Talking To Your Doctor..............Sorry, I mean your provider

Most people struggle with this concept of how to talk to your doctor. What questions do you ask? Are you even seeing a doctor, or a provider? Are you seeing a prescriber? If it is a doctor is it a DO or an MD? If it is a provider, can they prescribe medication? Are they a PA that is a physician's assistant? Are they a Nurse? An RN with a Master's Degree? A nurse prescriber? An RN-C a clinical nurse specialist?
Ask their educational background.
If they are not a physician, are they supervised by a physician? That level of supervision will depend on which United State you are living in.
If it is a physician are they board certified by their specialty board. Board Certification varies, you don't have to be board certified to practice in a specialty, and it is extra credentialing. Personally I prefer someone who is a board certified physician in that specialty. The credentialing for this involves extra testing and competency.
The physician specialties that generally treat AD are Neurology, Psychiatry, (Same certifying board for these two specialties, different competencies though-more on this later), Family Practice, and Internal Medicine, For these specialties it means a doctor has gone to four years of medical school, and then performed a residency in that specialty generally another 3-4 years. In addition after four years of residency there are Sub-Specialists, which is another fellowship of one to two years is performed in for example Geriatric Psychiatry, which is a specialty in a specialty.
Physicians (those that have gone to medical school) are generally MD's- Allopathic medicine, or DO's -Osteopathic Medicine. There are a few other disciplines that have not gone to medical school like chiropractors with a DC degree. They often refer to themselves as chiropractic physicians.
If you have a PhD in anything history, philosophy microbiology, you are addressed as DOCTOR.
This is relevant in AD because there are many Neuropsychologists that evaluate and treat patients with AD. In addition there are a whole host of other PhD backgrounds that may be on the treatment team, depending on how subspecialized you treatment facility is. Generally the more larger and urban a facility is, the more subspecialized PhD's you will find.
This may or may not be important to you.
A "provider" provides care.
A "prescriber" is a provider that can prescribe medicine. Not all providers can prescribe medicine, but all persons that can prescribe if practicing are providers.
When my mother was diagnosed back in 1979, there was no such thing as differentiation of providers and prescribers. You simply had doctors.
My how far we have come.
Medical School is still really hard to get accepted into.
Example- It is hard to say find a an MD who settled for medical school, because they could not get accepted to some other school like dental, law, chiropractic, school. Horribly politically incorrect statement, (but the honest to God truth) perpetuates the myth of the "ARROGANT" doctor on the golf course driving around in a Ferrari etc. We love to romanticize our stereotypes.
You would probably find more dentists and lawyers on the golf course on a Wednesday afternoon than MD's. Most other disciplines get the last laugh financially, is it important to know your prescribers background? I like to, but obviously I am biased. The indoctrination process, the training in decision making, the commitment and "the way of life" assumption of bottom line responsibility and liability mean something to me.
There are MD's who are terrible providers (not all), and non-MD's who are wonderful providers (not all). Generally speaking because I have a bias, having given 15 years of my life devoted solely to the pursuit of medicine, I prefer to seek my medical care from an MD if at all possible.

A LONG WAY TO GO..............................

Back in 1979, my mother was diagnosed with AD. There were no meds., no treatments. NOW AD is a household word. It is something we don't want to think or talk about till it affects us. We don't know the cause and we can’t have the cure. We have some meds that can slow down the progression of the illness. My mother died in 1987. The disease killed her. There were no FDA approved meds till the early 1990's. Cognex then Aricept, then Exelon then Razadyne, They all work basically the same way. Then came Namenda which worked differently. None cure.... in the best of all worlds they can significantly slow the downward spiral of the illness. A person may have their personality and mental capacities preserved to some degree for a longer period of time, a week, a month, even years. That may translate into keeping someone out of a nursing home for another six months or year. I would have wanted that for my mother back 30 years ago. Alzheimer's disease is progressive and it eventually kills you. You may technically die form something else, but the disease destroys over the course of years a persons cognition and personality. The AD victim may be in good physical health, but eventually as the disease destroys the mind and the body does follow along, be it from pneumonia, or cardiovascular disease or whatever. It’s amazing how far we have not come in thirty years. The federal funding for AD research is a fraction of what it is for many other diseases, for example AIDs’ and HIV research. This in spite of the fact that AD kills four times as many people every year as AID’s.
I dread the impact of the health care politico polarization in this country regarding the health care changes.
I can't find anything in the health care status quo that places any priority on Alzheimer's, and with all the political chaos and debate in the media and Washington I have not seen any concern for Alzheimer's with the impending health care reform. .....nice priorities federal civil servants.

Support in Numbers

5.3 million people are affliced with Alzheimer's disease. That's about the enitre population of the State of Minnesota where I live. No one can really say how many family members of Alzheimer's victims and loved ones are affected. Is it 15 million? 30 Million? 50 million? perhaps 15 to 20 percent of the population? Why are there so few blog's on Alzheimer's? Is it becouse video games are more fun? We are all going to get older and older. We live longer. Alzheimer's is not caused by aging and you know it is NOT a normal part of aging. The major risk factor for Alzheimer's is advancing age however.
If you live into your sixties, there is about a one in five chance you will devlop Alzheimer's disease. If you live into your 80's it is even odds. 50/50
We are a youth and beauty driven culture. Alzheimer's is not pretty. It is detestable.
Moreover it is a profoundly isolating experience for the caregiver. I know that most people taking care of a loved one or family member with Alzheimer's Disease (AD), probably do not have much time to read this. But you are not alone.
My mother was diagnosed with Alzheimer's Disease in 1979. I had just turned 17 years old at the time. I was her primary caregiver for two years. She went through every stage of the disease, and died about 8 years after the diagnosis. It was mean and aggressive.
She died in my third year of medical school. I learned all about Alzheimer's before it was a household word. Back when it used to call it "Senility" or "hardening of the arteries of the brain" Both of these terms are strong misnomers.
I treated many patients with AD over the years. I have seen there families suffer. I have lived the isolation and as a doctor have treated my patients and their families struggeling with the isolation. This blog is for the unity and hope of all those caregiving and surviving Alzheimer's.
When you know you are not alone, there is a little bit of fortitude that is added to the caregivers spirit and decreasgin that isolation in any way possible is my foremost goal