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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Labors….of Love

Carol Burnett once described giving birth as similar to…”taking your lower lip and forcing it over your head”.  I’d say that was a pretty fair assessment of the entire process.

                                                              

When my first daughter was born, in 1972, the Lamaze technique wasn’t encouraged by my Obstetrician regardless of how much I insisted on using that method.  Little did he, or I, know that Jennifer would make her entrance 61 minutes after the first labor pains started but drugs were administered just the same.  Once I emerged from anaesthesia, “Dr. Bozo” had the audacity to comment “how we could have done this drug-less” since, in his opinion, I was one of those women who have fairly spontaneous deliveries.  Jennifer Ann weighed-in at 8 lbs. 4 oz.

I changed physicians after that….

My husband and I attended Lamaze classes when our second daughter was on her way, carrying pillows each week to sit on the floor and practice along with twelve other couples.  I remember one husband constantly asking what the best method was to “cut the umbilical cord” and everyone in the class cringed at the thought of this man delivering his own baby.  He spoke endlessly, as well, about employing the Leboyer method of delivery, in the bathtub; his wife had a due date before any of the others in our group.   Much to everyone’s relief, our birthing coach later informed us that he managed to deliver his son without incident.  Those of us who were still in the class practiced our breathing, timed fake contractions and each couple looked forward to the experience.  

Shortly after our last session,  I awoke to rumbling labor pains during the night and we rushed to the hospital, anxious to put all our birthing knowledge to the test.  The only issue was…each stabbing, gut-wrenching, teeth-grinding jolt of pain came in two-minute intervals and…our second child was born 31 minutes after our hospital arrival.  No drugs and little chance to use the calm, controlled birthing methods that we learned in Lamaze class.  The delivery room nurse probably never realized how close she came to serious bodily injury after she kept patting my hand while telling me to take deep breaths and NOT push!

Push I did….. Jill Amanda weighed-in at 8 lbs., 7 oz.

Three years later, I was pregnant again.  Why not?  As an only child with a mother who thought I was out of my mind to do so…..I liked having babies

Really…I did!

Working late into the night on September 23, 1978, my husband and I were preparing to open our new business. A warm, muggy Saturday night had me staining doors, standing on swollen ankles complete with a big belly that had smudges all over it as I kept bumping into freshly-painted walls.  Now and then, what I thought were Braxton-Hicks contractions took my breath away but I continued painting, and paining, until 2 in the morning.  Finally home, I climbed into bed only to have my water break; shortly after, contractions started coming less than 3 minutes apart.  A call to my doctor brought a response of “it’s probably false labor, go to the hospital if you feel the need”…and we were off!  To this day, I remember my husband driving on the wrong side of the street as I almost gave birth in the car.

My doctor never made it to the hospital in time; a Midwife delivered our son and also kept my husband from the delivery room; “hospital rules” according to her that didn’t allow for a birthing coach when the physician of record was not present.   When “Dr. Know-It-All” finally arrived, he complained to my husband that I had…”waited too long before calling him”.   I was surrounded by a cranky doctor and an even-crankier husband who still complains that I kept him from seeing his son being born.  I remind him that at least he was there for the conception…

Water breaking + Contractions =  16 minutes- total time elapsed – start to finish!

John Alexander weighed-in at 8 lbs., 4 oz.

Today…..is his birthday and I can honestly say that having each of my children has been a labor…of much love!

I have to be nice to each of them because they will be taking care of me in my old age.

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White Lace….and promises

“Mom, Jaron and I are engaged! We’re getting married! We need to talk Wedding!”

 

Gulp!

Engaged, married, wedding plans? Jennifer, fresh out of college and with a new teaching career, suddenly on her way to becoming a wife? What happened to my little beach baby in her pink swimsuit and Pebbles Flintstone hairdo? What happened to the three-year old who once screamed out “more bones!” in our favorite Chinese restaurant and the laughing waiters scurried to bring her more spareribs?

Worse yet, me, the Mother of the Bride?

Okay, I can do this, I thought…..sure I can!

Following their joyful engagement announcement came the meeting with our future son-in-laws family; a very pleasant evening spent getting to know each other and talking….wedding plans. My husband and I have been fortunate to have them become part of our extended family. Faye and Leo were anxious to help in whatever way they could with (what I was secretly planning to become)….the wedding of the century.  From that point on, the creative wheels turned in my head day and night. Of course, I was armed with Martha Stewart’s Wedding Planner, a book no self-respecting mother should be without when a daughter prepares to marry.

I love Martha, regardless of the time she spent in the hoosegow.

And so, it came to pass, in the land of Kent, located in Putnam County, New York, a small Garden Wedding was planned for September 21, 1996 and…for only about 100 to 150 guests. As word of the event spread through the kingdoms of both families, people begged to be invited, prior to the mailed formalities, and what was to be an intimate gathering rapidly blossomed into one of epic proportions with a final head count of……275!

Helloooooo?  Like, almost no one sent back… “Regrets”?   Blame it on Martha.

My saved wedding organization lists take up an entire, 32 pound storage box marked “Jen & Jaron’s Wedding – 1996”. The rental company still sends us cards, thanking us for the fortune we spent on a tent, china, silver, glassware, linens, outside ovens, dance floor, tables, chairs…you name it, I rented it and my husband still gets misty-eyed when he passes by the, now-empty mattress (that is an Italian-thing).   It didn’t stop there.   We had the caterer from our favorite Italian restaurant, a Sushi Bar, Liquor, Beer on Tap, Fancy Portable Toilets, Waitresses, Bartenders, Disc Jockey, Strolling Mandolin Player, Stuffed Derma (that is a Jewish-thing) and…the “God Squad”….a Rabbi and Priest who officiated at the nuptials, both providing an uplifting and joyful experience for all who attended.

It was….a beautiful event, considering the weather that year had been horrible up to the big day. A summer of rain and humidity, soggy grounds at the tent site and endless preparations gave everyone stress, especially me.  On the morning of the wedding, as I sat in my workshop putting the finishing touches on all the flowers and the Wedding Cake, the sun came up and put its welcome arms around the day. The festivities started at noontime and lasted until almost midnight. People were everywhere, dancing, eating, drinking and laughing. If I had forgotten anything, it mattered to no one; suddenly, the stress was gone and I realized that the feeling of satisfaction that one gets when you’ve tried your best is… a very good thing.

Martha always says that.

I say….Happy Anniversary, Jennifer and Jaron!

                                                                                                                        jj-9-21-96-1

 

                                                                               

 

 

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