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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Conversations with a (familiar) stranger…..

I’m going to date myself here….big time!  Who remembers a movie called “The Three Faces of Eve”?

Thought so.

Way back in 1957, Joanne Woodward played the starring role in this fascinating story about a real-life woman who suffered from Multiple-Personality Disorder caused by a traumatic childhood event.

You can Google it.

What does this have to do with the basis of my Blog which is about my mother’s affliction with Alzheimer’s disease?  Well, (and I’m reaching here) the whole “multiple personality” issue is something I experienced as a caregiver.  Some days, it was hilarious, and others…downright maddening as my mother went through interesting phases of identity.

A few brief recollections of Mother Didn’t Know Best. 

                  ( Dialogue key (Moi=Blue    Mother=Red)

Daily conversations almost always went like this and, yes, mom had a potty mouth.  What can I say.

“morning mom, it’s time to get up and get ready for day care”

“who the hell are you?”

“I’m your daughter”

“well… shit”

“don’t you remember me, mom?”

 “no, I don’t, I’m sorry.   I have to urinate, hurry UP”

 “mom, you have diapers on, you’ll be fine.  I’m going to get your clothes ready for today”

 “no I WON’T, dammit.  where’s my keys?”

“what do you need keys for?”

 “I have to go home now”

“how about we just get you into the bathroom?”

“for what?”

 And, one morning, Mom was waiting in the Breakfast Nook when I came down the hall.

“hi mom….where did you get that coffee?”

“what coffee?”

“uh…the cup in front of you?”

“oh, that man down the hall gave it to me”

“man down the hall?”

“yes….him” <pointing a finger>

Just then, my husband came into the kitchen and fessed-up to giving her coffee when he found her sitting there.
From that point forward, he came to be known only as…”the man down the hall”.

 

Evenings brought many interesting performances from my mother’s room, usually starting around 11 p.m. and continuing until about 4 a.m.  Keep in mind that my mother wore a Posey restraint in bed, to keep her from falling out and getting out the front door which she did at regular intervals When she was on stage, I was right outside her door, yawning, listening, holding a cup of coffee and gritting my teeth.

“sonofabitch, I can’t untie this!  help…..help….help!”

“that’s just great, no one is home”

“oh hi….can you get me scissors from that desk over there?”

“none?  SHIT!  help……help………HELP!”

Allow me to step into this conversation to state that there was no one in her room except for whoever was visible only to her.

 One more late night performance:

“Dr. Stein, can you please come to Pat Strollo’s room?”

“hellooooooooo…..Dr. Stein?”

“nurse, what’s the matter with you, can’t you hear me, dammit?  Get me Dr. Stein!”

“Dr. Stein, I want to go home!”

“nurse, I have to urinate”

“Shit, where the hell is everybody, I have to get to work!”

“Dr. Stein, I’m going to report you!”

 

Jumping in here again to state, first,  that my mother’s maiden name was Strollo;  her married name, Smith, ceased to exist as Alzheimer’s marched through her brain. Mom was in the Twilight Zone going back about 60 years or more that night and, I have no idea where Dr. Stein came from, or the nurse.  With no offense to anyone of the Jewish faith who might read this, my mother never had a physician who wasn’t a Christian.  I still cannot figure that one out.

Shortly before my Mom died, she was sitting on the couch and when I walked over she exclaimed, “There she is, there’s my daughter!” I quickly went and sat down next to her.  For a brief time, there was recognition and somewhat sane conversation as my mother asked me what was wrong with her and why she couldn’t remember; she was suddenly aware and her mind focused on the present.  In a moment of sheer stupidity, on my part, I told her to wait and I would run and make us both coffee so we could sit and talk some more.

Cookies and coffee in hand, I excitedly returned to sit with her;  as I did, she looked up and said, “Oh hi!  I’m sorry, but I forgot your name.”


She was gone; back into the deepest shadows of her memories and I was back on the outside, still trying to get in.

Two weeks later, she passed away, still not remembering my name.

 

 

 

 

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Dysfunction Junction……..All Aboard!!

 DJunction

My noggin has been working overtime and that is not a bad thing unless, of course, I blow a mind-fuse or my Motherboard.

Oh no, there’s that “M” word again!
 
Mother, the person who contributed to my existence on this troubled earth we live in and the foundation of my writings. I find it difficult to get through a day without tripping over some reminder of the woman who dabbled in selective motherhood.

On top of it all, those darn skeletons have been creeping out of the closet for the last day, or two, after being locked away for the last 3 years since…. “the crash”.

Yes, the big one….that dreaded Blue Screen of Death!

It happened shortly after Mom died as I went into my office to finalize the revisions on my book. Fired up my Dell and it fired right back with a series of messages that my hard drive was Done, Kaput, Finito!

Guess what I had neglected to do?

              imagesCAK73EN9

 

Yes, guilty as charged for not having backed-up all my data. There was no fix, no rescue, no Geek Squad; my work, photographs, my book…..gone. Fortunately, thanks to my participation in a local writer’s group, I did have hard copy on most of the book, just not the latest updates added after Mom’s death.

Hey….I never said I was perfect!

I regarded this as an omen, a reason to step away from what had been so important to me and packed my book away, shoving the skeletons to the back of the closet in the process. Somehow I thought that my mother’s passing relieved me of having to share her story, and mine, that closure had finally come to pass now that the hurtful progressions of the past had come to an end.

The very day my mother died, my husband turned to me and said “You’re free now”.  Indeed I was, or so I thought.  No more endless nights of screaming and attempted escapes out the door; no more diapers, laundry, ducking from hurled food across the table.  No more rushing to get her ready for day care so I could work or making the 50 mile trip back home each day to pick her up again.  Ahhhh….I really was….free!

Until the skeletons picked the closet lock and made a break for it, causing the anger set in once again, and I started thinking.  After all, you need a license for a dog, a license to get married, well, there should be a similar requirement where a child is concerned. Think about it.
 

I make a good point, do I not?


Consider the red tape adoptive parents have to wade through in order to bring a child into their lives. Agencies mandate months of exhaustive investigations in an effort to assure that the adoptive child goes into a stable, productive and safe environment.

Giving birth does not give every woman the necessary credentials that guarantee her of being a responsible mother. Let’s face it, having a child is a learning process unto itself apart from the help and assistance of relatives, friends and books. Some women are exemplary mothers from day one, others cannot separate themselves from the baggage of their past to responsibly provide for the child they bring into the world.  

Understand that I remember because I choose to do so unlike my mother who made the conscious decision to forget long before Alzheimer’s disease started its assault on her brain.

How do you forget your only child, any child, for that matter? Sure, everyone has their moments of parental ignorance, deliberate or otherwise and, raising children, at times, can be an on-going test of wills and a losing battle of patience versus demands. But, where I was concerned, I was a good kid.

Honestly, I was!

Okay, my defenses are kicking-up here, as usual. It always happens when I delve too deeply into my painful family history. There’s no graceful way around it for I’m totally committed to sharing what must be said in the hopes of reaching out to some other kindred spirit who, like me, grew up, and has become a survivor, in spite of fractured parental units.

Survivora person who continues to function or prosper in spite of opposition, hardship, or setbacks.

  • Continues to function – Yes, for the most part. 
  • Prosper In this economy? 
  • OppositionDealing with remarks like “That’s in the past; why do you want to dwell on it?”
  • HardshipAlways feeling like damaged goods.  Does that qualify?
  • Setbacks Nightmares, flashbacks, old family photos that trigger bad memories and cause that chill to slide up the back of your neck.  Sound familiar? 

Anyone, anyone?

I know you’re out there….talk to me.






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