Hating the Truth

•July 4, 2013 • Leave a Comment

A beautiful poem.

Source of Inspiration

blind to truth

We hate the truth
for whatever we love
in its place. We cling to
invalid beliefs because
we can not bear the idea
that we have been fooled,
that all we believe was a lie.

Without the lie, who are
we? Like a house of cards,
our existance collapses in
the rubble of trickery. We are
left exposed, battered, unsure.

When truth benefits us, we
love it. When it rebukes,
we hate it but, in the end,
truth is all we have.

We are so set in our minds as
to what exists and what
doesn´t, that we leave not
room to explore the possibilities
that are all around. Blind fools
are we to the layers of life.

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George G. Glenner and the Alzheimer’s Family Care Centers of San Diego

•September 5, 2010 • Leave a Comment

I first heard of George G. Glenner in the Spring of 2004, two years after my mother had received a diagnosis for dementia with all of the markers of Alzheimer’s disease. Even then, all I knew of the man was that, years earlier, he had set up, with his wife Joy Glenner, a Family Care Center for the care and education of those suffering from Alzheimer’s disease and their loved ones. Caregiving for those with Alzheimer’s disease is a 24 hour a day job, unenviable and largely unappreciated by the recipients of the care. George Glenner’s Alzheimer Family Care Center provided a much needed respite for my family and the education we needed to care for her well. It wasn’t until later that I learned about the man himself.

George Glenner received his medical degree from Johns Hopkins University School of Medicine in 1954 and from 1964 to 1980 worked at the National Institutes of Health in Bethesda, Maryland as the chief of molecular pathology. It was here at NIH that he would start work on the elusive Alzheimer’s amyloid. In 1980 he moved to San Diego and began his work at the University of California San Diego; within two years he would be appointed as research pathologist and within two years of that Glenner would be world famous.

In 1984 Glenner and his team identified the molecular structure of the beta-amyloid. It was this discovery that would pave the road for much of the current developments in the highly competitive (and potentially highly lucrative) field of Alzheimer’s research. It was also this discovery that catapulted Glenner to the forefront of the very real race for the ‘cure’. Known by some as a ‘maverick’, and others as a ‘hero’, it was something entirely unrelated to research that would eventually spread Glenner’s name into the homes of caregivers throughout San Diego.

George Glenner’s fellow researchers knew him as a maverick for two reasons. The first reason is that, contrary to much of the research at the time, he followed hunches that seemed to be only loosely related to the end result. Second, Dr. Glenner would start doing something in San Diego that none of his fellows were doing, or probably even considered. In 1982 he would, in addition to his duties in the lab at UCSD, start ‘caring for the living’. Dr. George Glenner and his wife Joy started the first Alzheimer Family Care Center in Hillcrest, in an unobtrusive cottage on 4th and Pennsylvania. Hardly the place to start a revolution in the care and treatment of this horrible disease, but there it began.

Check out the George G. Glenner Alzheimer’s Family Care Centers here.

As of right now I am working on an article for either the San Diego Magazine or some other local magazine or newspaper about the Glenner Center and the struggle to maintain the passion and profitability of its early years.  The basis for the George Glenner portions of the article are above; to flesh out the article I will be taking the highlights of Dr. Glenner’s career in interposing them into my own story, and how the Glenner Center helped me to progress from fear to faith in my own duties as caregiver and son.

David

Two Emotions Introduction

•September 4, 2010 • Leave a Comment

A while back I heard a lecture series on recovery concepts given by a gnarled old man who worked on race cars for fun and saved lives for work.  Of all his lectures – each one somewhat memorable – one sticks out far more than all of the rest.  On a cold December morning he forced me to live up to the principles that governed my life and the emotions that governed my actions.  According to him we have only two emotions, love and fear.  And wherever there is love, fear cannot exist.  At the time I was living in almost complete fear; I was afraid that my mother (who had Alzheimer’s disease) would pass away with complete loss of self; I was afraid that I wouldn’t be able to take care of her.  I was to learn a way of living that allowed me to move into the uncertain future without fear, to effectively care for my mother, and to help others do the same.

This blog is only loosely based on the Two Emotions concept.  It is really about the caregiving concepts that allow us to care for our loved ones, tools for the care of a loved one, and news in research.  Join us and let us know what you think!

The Education of a Caregiver

•September 4, 2010 • 1 Comment

Long before my mother was diagnosed with Alzheimer’s disease my family and I knew that something was affecting her. Lifelong activities had been gradually set aside, as well as personal and sentimental items, some of which were never found again. It was six months before we were able to convince her that she needed a professional diagnostic evaluation, and that such a consult would be in her best interests. Once in the doctors office she was ushered into a battery of tests, including a CT scan and an MRI, which were enough to confirm an initial diagnosis. Several nerve-wracking weeks later, back at the doctor for an unrelated appointment, she was told bluntly that she had dementia with all of the indicators of Alzheimer’s disease. She was fifty-four years old and had likely been keeping up appearances for years.

Early-onset Alzheimer’s disease (EOAD) is a difficult diagnosis to accept. However, despite an adamant desire to never again see the physician who delivered the diagnosis, she took it better than I did. I had a head full of misinformation and denial and as I watched my family band together I drifted slowly away. I felt as if the light had gone off and I was lost without her. The gates of dementia were slowly closing, effectively isolating me in darkness. I closed up, and through reckless attempts to protect myself from pain I cut myself off from possible joy.

I was to spend two years in that morass of denial and self-obfuscation. By then what lingering hopes I once entertained had been long since smashed by the rapid progression of her disease. Incredibly, I still knew next to nothing about EOAD save that it was rapid, progressive, and terminal. Those lonely years had taken their toll on my own health. By the time I was ready to accept her diagnosis the both of us were in need of care.

I entered treatment and and my mother entered an Alzheimer’s disease specific day-care. She was well cared for, fed, and engaged during the day. It was a lifesaver for my beleaguered family. Day to day errands that had piled up were completed. Old letters and social calls were answered. Late bills were paid. A thoroughly messy house was cleaned. And lives that had been on hold found a second wind and began to pick up steam. But they were exhausted. Seeing this I developed a strong desire for a more active role in the care of my mother and endeavored to make up for my long absence.

Nothing could have prepared me for her appearance. She had lost weight and sometimes tended to look not at me but past me. She had trouble speaking coherently, and repeated certain words over and over to fill the silent moments with sound. It was obvious that her cognizant function had declined considerably. Her mood was erratic. But she knew who I was, and as I struggled to hold back tears she gave me a smile that transformed her entirely to something vibrant with love and life, if not complete memory. I scooped her up and hugged her, finally realizing that I had a place in my family, and that like them I would do anything to keep her smiling and happy.

I had a lot to learn.

The Alzheimer’s Family Center where my mother attended day-care held weekly support groups and co-hosted information symposiums with other dementia organizations like the Alzheimer’s Association and local respite and elder care facilities. My father, who had been attending groups for over a year, invited me to the weekly support group, and my education began.

The first rule of caregiving is to take care of yourself first. This close-knit group made me painfully aware, by relating their personal experiences, what would happen to my mother if something were to happen to her caregivers. I was taken with their brutal honesty and knowing advice. After a while I opened up and shared my frustrations, expecting nothing like what I received – unconditional care and support from men and women like me – thrust into a situation not of our choosing but within our control. We leaned on each other, cried on each other, and laughed with each other. But more than anything, we learned from each other.

I learned how to communicate with my mother. More important than words, which may or may not have been heard correctly, were calm tones and . Oftentimes holding her hand gently during a walk told her more than words ever could.

I learned to structure activities like walks and meals around a schedule that does not vary from day to day. My mother grew to learn the routine and it became a comfort to her.

I learned to prepare beforehand for any trip to the doctor or other healthcare professional. Providing a written summary of behavior that the doctor cannot observe as well as any questions that I had has saved me from countless trips and emails and exasperation.

I learned to cut up her food and serve it in small portions. If we were out I could request that the kitchen cut it up for her. Meals became slower affairs. It was easier for her to eat without utensils, so our food choices reflected this. Finger-foods became a staple at restaurants and snacks were always available at home.

When pills became difficult we got capsules and sprinkled them on applesauce.

These lessons we learned and shared with each other as necessity provided. More important, though, we learned that nothing lasts forever. In time, and over time, we learned to let go. Our loved ones we took care of and kept close to our hearts, knowing that they were destined for other places. When my mother left I was prepared. We mourned her loss, and celebrated her life, and afterward we stayed to help newer caregivers educate themselves.