Saturday, August 22, 2009


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.

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Talking about the book with the Lake Superior wind....... a calm day