Tag Archives: care giving

Reflecting on Pulse ~ By One Pissed-off Christian Lady


It took a few days to do this. It took a few days because deep within my sadness the responses I saw flying across my newsfeed sickened me; physically took the steam out of me. Weeping in my own wine does not accomplish much. Much of what I have learned on my journey with Job demands that I do more – far more. So, here we go.

The events of June, 12, 2016 in Orlando, Florida are not the product of Reason A, or Reason B, or some other simplistic, easy fix, “if only” cause. It was an event that was a culmination of many factors; all of which we share in to one degree or another. Humans do not like to think beyond the binary; it is hard work. To actually accept responsibility for tragedy is a whole different kettle of fish. There were many factors that left 50 cell phones ringing, unanswered, on a bloodied dance floor.

It is not productive to choose among the many in order to gain admittance to the wake. It is not acceptable to exclude a facet of the blood-covered stone to create a better setting for your own agenda. First, and foremost, it is about the arrogant turpitude that allows us to pick and choose those causes that best fit our own agenda. These are my picks, and there is nothing simple about them.

It’s about LBGT

No, you don’t get off the hook. You are not allowed to push this down (actually up, if you know your Native American lore) the totem. Whatever his future plans may have been, the perp saw a few guys kissing, and went ballistic. He targeted a gay club on a busy night and during a time of celebration. Word has it that it was a club that he, himself, had visited.

Did he think Americans would not care? That they might even thank him? Part of what sickened me this week is the number of pastors, and professed Christians, that stepped up to say that it was God’s judgment on the gays. Or that it was a good thing all those pedophiles were gone. (There is a vast difference, and I ought to know). Men who professed a belief in God who stood in front of congregations, and, while insisting that they did not advocate murder, suggested we should not grieve. Were there many? I have no clue. It is horrible enough that even one blasphemed his or her pulpit with this venom. They are no better than Mateem’s father who said his son should have left the murders to God.

It’s about religious fanaticism

The true believer, according to Eric Hoffer, needs the movement more than the movement needs him or her. Sometimes we cannot be driven to our worst (or our best) unless we perceive something greater than ourselves that demands it. Not always a superior being, sometimes just the mob, the organization, the belonging. But we, we of western civilized culture, do not come to the bar with clean hands. Not only is human history soaked in the blood of “others,” we light the fire brighter every time we choose to hate. Defend, yes. Hate, no thank you. Hatred changes you and takes away all that is human. Muslim, Christian, Jew, Hindu: it really does not matter. The founders of these faiths all spoke of something beyond the faith. Something intrinsically human. We are all selling our sacred heritage short if we choose to use it as a sword, rather than a way to support.

It’s about terrorism, domestic, foreign, and familial

If only. If only he had been dealt with when the charges of domestic violence floated around. If only the FBI had kept closer tabs, if only. If only McVey had not allowed himself to be egged on; if only there had been better communication before 9-11. When are we going to learn that we are part of the problem? If you believe the current administration is soft on terror you are sorely mistaken. Over the past 7.5 years Bin Laden is not the only target taken down. But these people don’t brag. They don’t occupy us with cheerleaders. They don’t stir up the hornets’ nest by blasting every victory across the headlines. They quietly, and efficiently, dismantle the knots of venom. The truly evil are being sought out. The war is with them, not your Muslim neighbor.

Sometimes we do win. Neighbors saw suspicious activity and reported it to police and police responded. A man from Indiana, a mid-western, white boy, was on his way to create mayhem at a Pride parade. But he was stopped. Countless other “almost events” have been stopped over the past several years. So, sometimes – whatever the threat – everything works as it should.

It’s about guns

I’m not against guns. I’m really not. I have, actually, used them and I’m not a bad shot. But, here’s the thing. We need a conversation about what is appropriate. I did some research (that’s what I do) and the AR-15 is not, I repeat not, a military-grade assault weapon. It is a modified, semi-automatic rifle that can be altered to accept a magazine of up to 100 bullets. As a semi-auto, it can be fired as quickly as the shooter can compress the trigger. One clip from Sunday morning records 20 shots within a 9 second interval. If you are going to talk about gun responsibility, and still preserve rights, then it is a good idea to know what the hell you are talking about.

Should citizens be armed with this capacity? I saw a meme float across my feed that froze my soul. “The problem was not the one bad guy with a gun, but the 103 without one.” Really? Please for the sake of all that is holy can someone tell me they don’t really believe this? Think about filling a room of over a hundred people, dancing to loud music, some of whom are at varying degrees of intoxication, and arm them. Then flip the panic button. What are the odds that the right guy gets shot, and that anyone walks out alive?

There are several timelines of the events available on line. I have relied on police reports to sort out the order. Just after 2 AM Mateen entered the club and started shooting. An off duty officer in the employ of the club immediately engaged the shooter and called for backup. Not long after backup arrives, Mateen barricades himself in one of the bathrooms and calls 911. Then he starts talking about bombs and ISIS. Swat, having already been onsite, breaches the building, and takes him down. Regaining control took a team of trained, prepared police officers, with all of the equipment available to them (including Kevlar helmets). The “good guy with a gun” was not able to control the situation; even though he was right on top of it. Some people I know might have been able to drop the perp in his tracks before he got very far. I’m not sure they are the type of folks that would have been in a gay bar at 2 in the morning.

If you are trying to protect yourself from the government I have a secret to tell you – they have drones, and black helicopters, and bigger bombs than you. If you are trying to protect your family in an event such as Sunday morning suggests? Then be trained, be smart and don’t complain when folks with appropriate credentials want to know where those weapons are and who had them last.


And here is the punch line. If you really, sincerely, want to be part of the solution. If you want to make sure that nutcases are not able to use hatred and turmoil to achieve their goals, if you want to be the humanitarian, the Christian, the believer you profess to be, then do something with value.

Stop “loving the person and hating the sin” and just love the person. Educate yourself about the LBGT community, and the issues they face. It is not a choice, people. All of the colors of the rainbow involve a complex combination of hormones, brain patterns, physiology, and plain old fashioned self-image.

If you want to be intolerant, be intolerant of violence, be it domestic, work place, any place. Do not let monsters grow in our midst. Get them help, or get them somewhere safer for us all.

Support those in desperate need. Please check before you give. I know of one GoFundMe that raised some $3,509,556 as of noon PT Tuesday. Find a way to put motion into your rhetoric; motion that says you really do care. Not just for gays, for every human soul that crosses your path. Be the change you want to see.



Filed under Giving Back, Humanties for the Unbound Mind, My Journey with Job, Personal Journeys

Introducing Dementia – A Glimpse from the Eyes of the Afflicted: Part the Second

I posted the first segment of this series on June 9.  The title was Launching my Speaking Career: Part the First and it provided first segment of a talk that I give.  This is the second part of that talk, a piece that I hope will give my readers some understanding of how the mind suffering from dementia handles the concept of time.  So here we talk about Time, the biggest abstract of all.

Time is such an elusive concept that even philosophers, neurologists, physicists, cosmologists and mathematicians have difficulty trying to describe exactly what time is.   It drives us, eludes us, and holds us captive.  Unless, of course, our mind no longer understands just what it is that this thing “time” demands.  Some very good resources that describe what we do and do not know about time are Fabric of the Cosmos by Brian Greene (in Book and DVD form) and an episode entitled “Does Time Really Exist” from Through the Wormhole with Morgan Freeman(among others). And yet, with all of the complexity we are discovering about time or space-time, those of us with basic cognitive abilities manage to work within its constraints.  Even tribes in the deep of Amazon jungles which have no terms for “time” do have a concept of which season follows which and what activities one does during each of those seasons.

Time as a concept in any form fails almost entirely within the mind affected by dementia.  When that happens, an amazing number of anchor points in our lives no longer exist.  You might think of a ship at sea suffering from a sudden loss of navigation systems when it’s too cloudy to see the stars.

Losing the “navigation” system of our lives causes a number of issues.  For instance, one of the things time does is provide a sequence of events.  It provides a logical framework for cause and effect in the activities going on around us.  I have included some photographs in this article to better illustrate my point.



The first one in the series is a sequence of a person climbing on a rock.  Looking at the picture, can you tell if the sequence shows the person climbing up or down the rock?  Can you be certain of where the sequence begins?

The second photograph shows a sequence of a girl in a swing.  Is it evident when the camera first started to record the action?  Did the action in the shoot start at the top of her swing to the right, the left?  Was she at the bottom of her swing?







The last photo is easier.  You can tell what the appropriate sequence is once you look closely enough.  However, was it immediately apparent?  Did your eye automatically travel from left to right before you stopped and looked closely enough to see the direction the skateboarder was really traveling?


(All photos are examples used by Photoshop to illustrate sequence photography and the use of the program).

For an individual that still retains their cognitive abilities exercises such as these are merely quirks of perception.  However, they illustrate a very real problem when discussing the perception of a person with dementia.  The inability to correctly identify the order of a sequence of events can have far reaching impacts.

I find that my husband goes from understanding that an event will not take place until later today, tomorrow, or next week, to having no concept of “wait.”  Whatever it is must happen right now this minute.  Or, knowing that we are going somewhere at 1:00, he’ll be ready to go a 10:00 and will get frustrated at me for waiting so long to leave.  Often he decides he is not going at all.  This happens with doctor’s appointments where I don’t have a lot of time flexibility.  So, I try to schedule as early in the morning as I can. This kind of planning reduces stress on both the care giver and their charge.

Time warping (if you will) also impacts sleep patterns.  So far my husband and I have managed well most of the time.  I will not get up before 4:00.  If he presses the issue I will start his shower and go back to bed.  Sometimes he is very apologetic, sometimes we just work through the situation.  If you live in an area where the seasons cause a large variation in the daylight hours, it can be even more difficult.  I know that sometimes in the far north I will wake up thinking I have overslept and yet it is still “night.”  Think of how that works out in a mind no longer able to track time.  Occasionally I have a very difficult time convincing him it is still the middle of the night with or without light.  I have learned that to some extent I have to let him be up and around.  I no longer take it personally if he gets upset because I remain in bed.  He will, eventually, get over it.

I mention in my book that I feel that time displacement could be a factor in Sundowning.  This is a condition experienced by many folks with dementia which causes them to sleep during the day and be up and wandering around most of the night.  I don’t think that is the problem that I currently face.  I do feel, however that this, and other types of time disorientation can be mitigated by using routine.  Depending on the severity of the situation, routine can conquer a number of issues.

To the best of my ability we do the same or similar things every day, week day or not and we do them at close to the same times and in the same order.  I realize that can’t always happen; life doesn’t come in neat packages.  However, to the best of your ability, keeping a regular schedule, every day and in a similar order helps a person with dementia develop a set of simple expectations.  I notice that when I put things out of order my husband gets terribly confused and works to bring things back to normal.  An illustration might help in this instance.

Not so long ago I found it necessary to replace my husband’s file cabinets with something easier for him to operate.  He no longer understood that you can only open one drawer at a time. To him, they were broken.  After trying a number of solutions to the problem I finally gave up and ordered some storage cabinets with doors.  Through the whole process, emptying old cabinets, moving old cabinets, waiting for new cabinets, reloading new cabinets, he was almost constantly agitated.  He was so upset over the whole affair that he completely lost his appetite and ended up taking naps a few days.

The real problem came the first day the cabinets were expected.  I received a brief, automated message that said my cabinets were late and would be delivered on the 15th.  That was the day they were supposed to be delivered.  All day on the phone and I never received a firm answer as to whether or not the cabinets would arrive that day.  I even fixed dinner before we went to the store so we wouldn’t keep him up too terribly late and so I could still wait to the last possible moment a UPS truck might arrive.  They never did.  In the meantime the routine had been broken.  When we returned from the store, as late as it was, he began setting the table for dinner.  It was far easier to fix a bedtime snack than to try to explain that our “routine” had been disturbed and we had already eaten.  Habits are life savers and you should try your best to create and maintain them.

Another tool I find useful is calendar counting.  Whenever it is obvious that something is important to him I mark it on the calendar and we count each day as it goes by.  This method doesn’t solve all issues (such as “no one told me we were going to the dentist then”).  It is a way of imposing structure where there is none.   As a side note you need to remember that “reminding” a person with dementia that you have told them certain things and have done so a thousand times is counter-productive.  It will infuse the situation with emotionally charged reactions that accomplish nothing.  I have learned to respond with something like, “Well, someone was supposed to, I will try to find out what happened.”

We talked a bit about sequences of events.  There is another aspect to drawing correct conclusions from what you see or think you see and in what order your brain interprets them. I recently watched a program which presented the work of an Associate Professor of Psychology.  Donna Rose Addis works at the University of Auckland and her research involves using MRI scans to see how our hippocampus contributes to our ability to construct future events.  The hippocampus, you may know, is the seat of our memory.  This is the storage room for all the things we know and can recall.  What her research has shown is that when we are asked to build a possible scenario about a future event, we rely quite heavily on our past experience.

This all seems reasonable when you think about it.  We learn by analogy.  We compare new things to the things we know and draw conclusions based on similarities.  What happens, though, when the storage room no longer functions adequately?  How do you envision a future event if you can no longer track the sequence of events that might lead up to it?  Going on a trip to visit your children or relatives in another state doesn’t mean much if the mind can no longer draw reasonably successful comparisons based on previous trips.  It’s that time thing again.  Losing the grasp of the sequence of life, of what actions cause what outcomes, sets the individual adrift on a cloudy sea without a navigation system.  Consider this when your patience wears thin.

I am being asked to publish and expanded version of Who I Am Yesterday.  The project will include a re-write of related articles from my blog, some poems, and photos from our week on Vancouver Island; the point it all suddenly changed.   Projected release is sometime late this fall.  In the meantime, the original can be found on Amazon.com or at the link provided on the page dedicated to the work on this blog.  Do you have an experience you would like to share?

This series has one more post in it:  the shifting sea of who we are and all those extra people.


Filed under Caregiving Backstage

Warning – This is a Promotion!

I have established promotional pricing for Who I Am Yesterday for one day only – Kindle version at Amazon.   The sale occurs on Sunday, August 26.  It has also been added to the Kindle Select program which means it can be borrowed for up to 30 days free of charge.   So, if you were thinking about it but not quite sure (or hadn’t found the time) grab it!

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Featured Title!

Just sharing another milestone!  Who I Am Yesterday is a featured title at WonderWorld.

This blog features various genres of ebooks of indie authors.  As it happens, my book made it to the front page!

This was made possible through friends at Facebook and community supporters.  Thanks everyone!  I really do appreciate it.

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Who I Am Yesterday – Contents

In response to a few requests, I am posting the table of contents for my book, Who I Am Yesterday, A Path to Coping With A Loved One’s Dementia.   This information and more is available at Amazon.com where the title is listed.   If you are ordering from Canada I strongly recommend that you order direct from the publisher, CreateSpace, or download the Kindle version from Amazon.  Shipping through Amazon export is more than the cost of the book and takes forever.

Here then are the contents:

Acknowledgements (i)
Introduction (1)
Lost on a Civilized Island (2)
Seeing the Light in the Fog (3)
Short Course in Grieving & Therapy (4)
When I Became Legion (6)
Home Coming to Someone Else’s Home (7)
The Path to Mental Breakdown (10)
Adjusting After the Island (18)
The Visit (20)
Another Major Change – “We” Must Leave (21)
The Trail Back (23)
Finding a New “Normal” (27)
Show & Tell & Tolkien Languages (30)
Prodigal Pronouns (33)
Time is an Essence (34)
Stealing Mail (38)
The Magic Desk & Other Disappearing Acts (39)
Fixing the Coffee Pot (40)
Buying Clothes & Other Closet Adventures (42)
Personal Hygiene & Other Cleaning Guides (46)
Medical Issues & Playing Nurse (50)
Books & Magazines (57)
Movies & TV Shows (59)
Through Thick & Thin & Emily Post (61)
Grocery Shopping & Anything Goes (65)
Telephones That Translate & Other Tele-tales (68)
Ears & Other Removable Parts (71)
Unlearning to Drive (74)
Finances in Fantasy Land (76)
Legally Speaking (81)
Relationships with Real & “Real” People (84)
Becoming Who I Am to Him (90)
It is a real attempt to seek humor, keep sane, and meet the requirements of being a full time caregiver for someone who has no clue they need one.

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Filed under Authored Works, Caregiving Backstage