Remember? Why?

 
 
 

We’d like for you to write about your first memory. Reach way back into your mind, try to find that first, earliest memory, and share it with us through your words.  Don’t just tell us what you remember, show us, make us feel what you felt, take us with you back to that first clear (or hazy) memory of your past.

 

 

 

 

Ouch! 

When this prompt came up last week, I cringed; memories, for me, especially early ones, aren’t terribly pleasant.  Why is it that good memories are sometimes forgotten but bad ones tend to linger way too long?

It’s okay, not playing the martyr here, not at all.  I honestly cannot offer a fitting response this prompt-time around but.. I still wanted to participate, in some way.   

Various posts on my blog have delved into my rough childhood and that’s because, at the point when I wrote them, I felt the need to put it out there, especially after having private discussions with several people.   Child abuse survivors often reach out to let others know they are not alone.  For now, I’ll just leave those memories slink off into some corner where they will hide, and wait, always reminding me that they aren’t far away.

How about someone else’s memories, or lack thereof?  Can I bend the rules…please?

For most of her life, my late mother had an uncanny ability to deliberately erase any memory which made her..uncomfortable.  Dementia crept in and relieved her of that job along with the ability to think – the very brain functions that shaped the person she once was.  Dealing with this as her daughter and caregiver was understandably frustrating.  All I can compare it to is when people speak very loudly to someone who doesn’t speak English, hoping they can make themselves understood.

Being in the company of someone with memory loss, 24/7,  finds you  always asking questions, the same ones, only to be met with a blank stare.  There is so much you need to know, things you neglected to ask at a time when there might have been a more cognizant response.  Sadly, those answers are never what you need to hear but you keep asking.  There is always a chance that some spark of remembering will come out of nowhere.

I waited for that opportunity to grab just one fleeting recollection.  That happened shortly before my mother died but, sadly, I waited too long.  Seconds too long.  I missed that last chance to recover a tiny bit of what Dementia had stolen; a joy, sorrow or some motherly recognition.  Her memory quickly flew away and out of sight even though I prodded for its return by asking mother to try hard to remember.

Her answer to me was…“Remember?…Why?”

 

 

 

 

 

 

 

 

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Let the Sundowning begin. Come howl at the Moon…..

The next scheduled moon phase is due on November 6, 2010 when a new moon makes its debut; a full moon waits in the wings to wreak its havoc on November 21st.

While my mother lived with us, life was dictated by the lunar calendar.  Episodes of Sundowning were always at their peak during a moon cycle and the consequences of her tirades generated many sleepless nights for everyone within hearing distance of her outbursts.  The subject of so-called full moon insanity is one of much debate with scientists rushing to spew out data on what they feel is folklore, media effects, tradition, misconceptions or cognitive biases surrounding human or animal behavior during any moon phase.

Ivan Kelly, James Rotton and Roger Culver (1996) examined over 100 studies on lunar effects and concluded that the studies have failed to show a reliable and significant correlation (i.e., one not likely due to chance) between the full moon, or any other phase of the moon, and each of the following:
-the homicide rate
-traffic accidents
-crisis calls to police or fire stations
-domestic violence
-births of babies
-suicide
-major disasters
-casino payout rates
-assassinations
-kidnappings
-aggression by professional hockey players
-violence in prisons

-psychiatric admissions [one study found admissions were lowest during a full moon]
-agitated behavior by nursing home residents
-assaults
-gunshot wounds
-stabbings
-emergency room admissions [
but see]
-behavioral outbursts of psychologically challenged rural adults
-lycanthropy

vampirism
-alcoholism
-sleep walking
epilepsy

I completely disagree with Kelly, Rotton and Culver on several of their assessments.  For example, these scientists did not live in my home for three years listening to my mother perform her dementia-operetta whenever the moonlight danced through the window of her room.  Millions of people continue to believe as I do, disregarding studies that pigeonhole these psychotic behaviors as nothing more than lunar myths.

Nursing homes have been a main source of reports concerning patients who, during a moon phase, are highly agitated, bang on walls, scream, yell and, even wearing a WanderGuard, manage an escape now and then from the facilities that house them.

Where my mother was concerned, I was often amazed at her agility during her episodes of Sundowning.  Alzheimer’s disease had re-located her mind to some fifty years, or more, in the past; back to a time when she was a young woman, full of piss and vinegar and able to get around most obstacles that blocked her path.  Now in her eighties, frail and unsteady when she walked, when a full moon was at its peak, so was mother.  She would yell for hours, manage to untie her bed restraint, undress herself and make a break for it.  Stopping any escape would be met with her clenched fists and notable profanity as she was led back to her room.  Usually within an hour of settling her down the rampage would start all over again.  Mom would always manage to drift off to sleep just when it was time to get her up and going for the day, never exhibiting an ounce of exhaustion from the long night before.

Certainly, the light shed by a full moon can mimic daylight for a mentally compromised individual, even for domesticated and wild animals.  Time to howl at the moon, waken everyone in the surrounding area and get up and walk around. 

My mother did just that whenever the giant, glowing, cheesehead grinned down from the heavens.

                                                

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Another journey into the dark….

Baby Boomer….People born between (and including) 1946 and 1964.
After American soldiers returned home from World War II in 1946, the United States experienced an explosion of births (hence the name baby boom) that continued for the next 18 years, when the birth rate began to drop.  Today, many of these “boomers” are dealing with the challenges of having to care for their elderly parents who suffer with Dementia-related illnesses.

That…..is what motivated me to write my book as well as this Blog.  At times, recalling everything that involved life with my late mother is overwhelming and I need to post thoughts on events that, I hope,  are light-hearted and bring readers a smile.  Somehow, it always comes full-circle, bringing me back to the subject of Alzheimer’s and care giving.

A close friend called today who has a mother currently hospitalized and ready to be transferred to a nursing facility for twenty-one days of rehabilitation; her Dementia has suddenly taken a rapid turn for the worse.  This woman’s family has known for some time that the mental state of their mother was questionable but she has managed to live by herself with assistance from her nearby sons and their wives.  Still, her behaviors have worsened in recent months and, as in so many families, decisions have to be made regarding her continued, longer term, care.  My friend commented that “it all seems to have moved so fast, her condition worsened almost overnight”.  This is what Alzheimer’s/Dementia does as it progresses through its stages of destruction.

Caregivers reading this have already done a yeoman’s job of research yet there are many families who are just broaching the surface of dealing with Alzheimer’s.  Many have lived with denial, as I did with my Mom, passing so much of what is stated below as some progressive degeneration that goes along with advancing years.  Too many families become so frustrated in trying to do the best for their loved one that they hesitate to question treatment options and administer whatever medications are prescribed.

The conversation I had earlier today with my friend focused on, what I feel, is a horrific drug…Haloperidol (Haldol) which has been prescribed for his mother.  I immediately advised him to refuse the use of this medication.  Why?  Developed back in 1958, this older antipsychotic was initially rejected by Searle Pharmaceuticals due to its side-effects; McNeil Laboratories later started marketing the drug which was finally approved by the FDA in 1967.  Haloperidol is used for the treatment of acute psychotic states and delirium.  Administered to patients diagnosed with neurological disorders such as Schizophrenia or Tourette’s Syndrome, Haloperidol has been rated as 50 times more potent than Thorazine.  In short the side effects of this agent are frightening and can often bring on a stroke, especially in elderly patients.

I have an acquaintance who is the director of a local nursing facility where, at one time, Haloperidol was widely prescribed for end-stage Alzheimer’s patients; the result was, almost always, fatal stroke.  In recent years, this drug has been removed from prescribed medication lists of many nursing homes….but not all.

Knowledge is power, my friends.  Learn all that you can; this will provide you with the background to ask the right questions in caring for your loved one.  Research any and all medications that may be prescribed as they are formulated for generalized treatment;  individual reactions to these compounds vary widely.

I’ve stated before that too many of these drugs butt heads with each other and exacerbate already troublesome symptoms that are present in an AD patient.  Join a support group where a wealth of information and understanding is shared by others; people who have a firm grasp on the reality of being a Caregiver.

Allow me to share some basic information from…. helpguide.org – a comparison on two methods used for staging Alzheimer’s with an overview on the time it may take various stages to run their devastating courses….this is lengthy but informative….

3 Stages of Alzheimer’s disease
Description Duration
Characteristics
Mild/Early
2-4yrs Frequent recent memory loss, particularly of recent conversations and events. Repeated questions, some problems expressing and understanding language.  Writing and using objects become difficult.  Depression and apathy can occur.  Drastic personality changes may accompany functional decline. Need reminders for daily activities, and difficulties with sequencing impact driving early in this stage.
Moderate/Middle 2-10 yrs Can no longer cover up problems.  Pervasive and persistent memory loss impacts life across settings. Rambling speech, unusual reasoning, confusion about current events, time, and place.  Potential to become lost in familiar settings, sleep disturbances, and mood or behavioral symptoms accelerate.  Nearly 80% of patients exhibit emotional and behavioral problems which are aggravated by stress and change. Slowness, rigidity, tremors, and gait problems impact mobility and coordination.  Need structure, reminders, and assistance with activities of daily living.
Severe/Late 1-3+ yrs Confused about past and present. Loss of recognition of familiar people and places.  Generally incapacitated with severe to total loss of verbal skills.  Unable to care for self.  Falls possible and immobility likely. Problems with swallowing, incontinence, and illness. Extreme problems with mood, behavioral problems, hallucinations, and delirium. Patients need total support and care, and often die from infections or pneumonia.

Other Models for understanding Alzheimer’s disease symptoms

Your doctor may also use a diagnostic framework with five, six, or seven levels.  Progression through these stages may last from 8 to 10 years.  Although it is rare, some live nearly 20 years from the time neuron change first occurs.
The seven stage framework includes the following dimensions:

  • Stage 1 – No impairment. Memory and cognitive abilities appear normal.
  • Stage 2 – Minimal Impairment/Normal Forgetfulness. Memory lapses and changes in thinking are rarely detected by friends, family, or medical personnel.  Half of those over 65 begin noticing problems in concentration and word recall.
  • Stage 3 – Early Confusional/Mild Cognitive Impairment.  Subtle difficulties impact functions.  Try to hide problems. Problems with word retrieval, planning, organization, misplacing objects, and forgetting recent learning affect home and work environments.  New learning, complex planning and organization may be impacted. Depression and other mood disturbances can occur.  Duration:  2-7 years.
  • Stage 4 – Late Confusional/Mild Alzheimer’s.  Problems handling finances result from mathematical challenges.  Recent events and conversations are increasingly forgotten.  Still know selves and family, but have problems carrying out sequential tasks, including cooking, driving, and home management tasks.  Ordering food at restaurants, independent shopping, and other sequential tasks are affected. Often withdraw from social situations, become defensive, and deny problems.  Need increasing assistance with the “business” of independent living.  Accurate diagnosis of Alzheimer’s disease possible.  Lasts roughly 2 years.
  • Stage 5 – Early Dementia/Moderate Alzheimer’s disease- Decline is more severe, and requires assistance. No longer able to manage independently in community. Unable to recall personal history details and contact information.  Frequently disoriented to place and or time.  A severe decline in numerical abilities and judgment skills leaves patients vulnerable to scams and at risk from safety issues.  Even if able to dress, feed, and perform other basic daily living tasks, require supervision.  Loss of current information is inconsistent and personal history is no longer reliably recalled.  Duration:  average of 1.5 years.
  • Stage 6 – Middle Dementia/Moderately Severe Alzheimer’s disease- Total lack of awareness of present events and can’t accurately remember the past. Progressively lose ability to dress and bathe independently. Bowel and bladder incontinence often occur, repetitive verbal or nonverbal behaviors are present, wandering, suspicion, and other dramatic personality changes are common.  Can’t remember close family members but know they are familiar.  Agitation and hallucinations are particularly present in the late afternoon or evening.  Late in this stage, need care and supervision but can respond to nonverbal stimuli, and communicate pleasure and pain behaviorally.  Lasts approximately 2.5 years.
  • Stage 7 – Late or Severe Dementia and Failure to Thrive.  Severely limited intellectual ability. Communicate through short words, cries, mumbles or moans.  When speech is lost, also lose ability to ambulate without help.  Health declines considerably as body systems begin to shut down, swallowing is impaired, and the brain is no longer able to interpret sensory input.  Generally bedridden, increased sleeping, seizures possible. No longer responds to environmental cues and requires total support around the clock for all functions of daily living and care.  Duration is impacted by quality of care and average length is 1-2.5 years.

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As with my friend, I’m always happy to share my experiences with the hopes that I can help someone else who has stepped into the role of a Caregiver. 

Thanks for stopping by….

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