Why I Stopped Blogging

I’m sorry to all you subscribers for disappearing so quickly. Something happened that took up a great deal of my attention. My dear wife was diagnosed with dementia, and I instinctively chose to immediately withdraw from most leisure activities to concentrate on her care. For those of you who may believe in divine providence (as I do), I was able to spot the symptoms because of my previous experience as a dementia caregiver.

Over the past couple of years, I had noticed a decline in Mary’s cognitive abilities. They all seemed to be related to short-term memory and/or subtle conceptualization. I might have missed the signs, but we’re talking about an exceptionally smart and accomplished woman. To have her turn into a “regular” sweet old lady isn’t something most would even notice. Her level of normal conversation isn’t affected much yet. She can drive and dress herself. She brushes her teeth and bathes by herself.

However, she was also in charge of paying monthly bills, because I was still working. Things began to go unpaid. We started getting calls and mail from creditors. She would apologize profusely, but it kept happening with increasing frequency, and it was completely out of character. She’s super-responsible by both nature and habit. She just plain forgot what had been paid, and what had not.

Unopened junk mail began accumulating, covering every available space on counters, tables and desks. I saw this exact symptom with her aunt, who is now in skilled nursing care for Alzheimer’s. Sometimes dementia runs in families. She was unable to sort out what was important from what could/should be thrown away. This is an indication of a loss in logic capabilities.

Then she began having a hard time finding the words she wished to say. Not the complex terms most of us might need a minute to recall (calibration, recidivism, impingement) but simple words like “remote” and “leash”.

There was an increased tendency to misplace her keys, purse or wallet. Until we were able to establish enough behavior modification (you always put “this thing” in the same spot upon entering the house, or getting in the car – NO EXCEPTIONS) these disappearances zoomed up to about 20 times per day.

By this time, I gave notice at the Urgent Care where I worked. We had appointments with neurologists, and she performed a complete battery of clinical tests which indicated a loss of approximately 30 IQ points. Her original doctor was impressed. Most dementia patients do not get spotted at an early stage. The earlier a diagnosis is established, the more effective the drugs are at slowing the process of decline. She was prescribed Aricept. She didn’t experience uncomfortable side effects adjusting to it, and it has cleared up some of the “fog”, though I know the drug is usually only effective for a few years. There are other drugs used at later stages.

Mary has had occasional depression while coming to terms with her condition, but it’s important to keep the patient engaged in the tasks that help manage their own care. So we do that. I have a history of emotional dissociation (a PTSD legacy) that helped me become a good medical assistant and tech, so I’m not as sad about this as some of our friends think I should be. I’m used to re-framing things in favor of the positives, and I am always, always fascinated to study disease processes. It’s a coping mechanism, but also a way of seeing things others can’t appreciate.

Unlike cancer, heart disease, and other things people die from, dementia doesn’t physically hurt. It’s more of an existential loss, an irreversible simplification of the adult personality. It returns the patient to their own childhood and infant self, until it causes death when the brain stops managing body functions. Mary has unrelated spinal pain issues, and that’s her focus most mornings. She’s cranky and distracted until her maintenance painkillers kick in. The rest of the time she’s pleasant and compassionate, though we do have many of the same conversations several times a day.

Because we caught this so early, Mary may take a decade or more to get to the point of 24-hour care. She’s 70 now, so other issues of decline or disease might overtake this. Or researchers might develop more effective treatments. I’m a good scientist. I’m not assuming much of anything. We work on this one day at a time, and observe what goes on, making smart choices as needed.

I waited for about a year to reveal this publicly, until she was comfortable with my doing it. One thing about me that is unusual is the fact that I definitely do NOT consider this a great tragedy, as most people seem to. We all have to die of something. All machines eventually wear out beyond repair. All that is material must pass. It could be a lot worse. I’ve SEEN a lot worse.

We still live in a community surrounded by great natural beauty, with neighbors and friends we love and have fun with. We’ve got a terrific, super-smart dog (who flunked out of the service training because he doesn’t like to share his toys). I’ve got arthritis in my hands, but it’s still manageable. We’ve got enough money to cover our medical costs so far. Life’s still well worth the effort. I’m enjoying whatever can be enjoyed.

I do apologize for having to keep my online readers in the dark though. Patient confidentiality is an old habit I was trained for.

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The Cost of a “Free” and Appropriate Education

A Pocketful of Motherhood...The Blog

Stampa

Back in 1973, under section 504 of the Individuals with Disabilities Act, a new world was formed for students with all types of disabilities. It is specifically defined as, “Under Section 504, FAPE is defined as “the provision of regular or special education and related aids and services that are designed to meet individual needs of handicapped persons as well as the needs of non-handicapped persons are met and based on adherence to procedural safeguards outlined in the law.” [source] FAPE is an acronym that stands for a free and appropriate public education.

While any education system is fraught with challenges and difficulties of all types, I personally believe that nothing has caused more confusion than the introduction of special education students into the classroom. Please don’t misunderstand me! I am in no way, shape, or form suggesting that children with special needs should not be included in…

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My beautiful spirit name

RELAX, IT ALL WORKS OUT

Wachiwi, dancing girl

Many spirit names, especially Native American, are lovely poetic word pictures. Hiawassee means meadow; Suwanee, echo; Hehewuti, warrior mother. My spirit name is Patsy. Go ahead, laugh.

Plain old Patsy was my childhood name, before I grew up and became Pat: professional, successful, competent, yadda yadda. I reclaimed Patsy recently, inspired during a powerful presentation about Native American spirit names at a monthly women’s meeting called Moon Circle, itself a poetic word picture. When I was a child in Silicon Valley—long, long ago when it was still called Santa Clara Valley and covered with orchards and fields of mustard grass and cross-crossed by a tangle of natural creeks—I was Patsy, petite and fair-skinned, with Scandinavian-white hair. I spent my days wandering the valley with my dog Smokie, following creeks, climbing trees, walking atop fences, foot-racing unknown kids who were wandering like me. I ran faster than any boy. When…

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On the Darkest Hours: When you Think of Giving Up Writing

(i’m writing a bit more, just not blogging as much. I found this inspiring.)

Dar Writes

Darlene Reilley's desk Writing…or not…

On the Darkest Hours: When You Think of Giving Up Writing

The writer lows suck. Based on my experience and research, all writers get them – the dark moments when you wonder if it matters. You ask: Does anything I write make a difference? Is there a point to it all? Should I set down my pen and walk away? Shouldn’t I be doing something else? Is this really what I want?

You must choose a path.

The question leads to one of two places.

Yes, only two places.

You want to make it more complicated than this, bring in outside factors like jobs and kids and dogs and school – in the end it boils down to one of two things:

  1. Write.
  2. Don’t write.

There is no judgement here.

Either you write or you do not.

Choose the path that works for you.

Scary or no, this…

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What elephants teach us about cancer prevention

Science Chronicle

File 20170425 12640 ojvxvk Elephants express many extra genes derived from the critical tumour suppressor gene TP53. – Photo: Stephen Tan/Flickr

Joshua Schiffman, University of Utah and Lisa Abegglen, University of Utah

Every time a cell divides, there is a chance for a mutation (mistake) to occur in the DNA – the substance that carries genetic information in all living organisms. These mutations can lead to cancer. The Conversation

If all cells have a similar chance of developing cancer-causing mutations, then very large and long-lived animals with more cells undergoing more cell divisions should develop cancer at a higher rate than smaller, short-lived animals with fewer cells dividing over less time.

But in 1977, Sir Richard Peto noted thathumans develop cancer at a rate similar to mice. This is despite having 1,000 times as many cells and living 30 times as long. Another example of this phenomenon can be found in elephants. They…

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World Press Fredom Day

Brussels Diplomatic

World Press Freedom Day is marked every year on 3 May, but there is little reason to celebrate as journalists continue to be repressed and persecuted all over the world. The challenges facing the press are discussed by Parliament’s human rights subcommittee on Thursday morning, with a special focus on the growing threat of disinformation. .

The internet technologies have created new opportunities for the media, and greatest advantage in promoting democracy representing threat to authoritarian powers, resting on filtering news to manipulate public opinion.

IT technologies and social media cause the traditional mass media profound crisis in the leading democracies as the USA, where the president accuses mass media of misrepresenting his views, preferring social media, namely Twitter to communicate with the citizens.

During the debate on 4 May, members of the human rights subcommittee will discuss the World Press Freedom index compiled by Reporters without Borders as well…

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