Altered Afternoon Relationships

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Tru here on 2019Feb06.
This month marks my 20th year since dementia symptoms became noticable.  Symptoms have definitely progressed, but progressed slowly.

Newest development is that
Lately find myself impatient, angry,
and just hostile by the time evening comes
… even with my morning nap.
Relationship interactions, (whether written or verbal),
become much more work by late afternoon.
It’s hard. it is just plain HARD  !

i think as my energy is further depleted during the day, i just dont have the energy to keep everything in perspective (and thus avoid so much frustration and anger). Keeping perspective requires REMEMBERING the context of whatever circumstances and people are involved in the interactions — and the context is always retreating. ugggh !!! 

Written words have been a problem for quite a few years now.  Understanding spoken words into concepts has become strong challenge for me in past year.  Moving deeper to the underlying meaning, taking into consideration the experiences/context of speaker (or writer) … and then keeping all of that context in mind DURING the interactions; it all requires copious amounts of energy.  Interactions are very important to me; relationships are what make life worth living … but for me, interactions also always cost energy, because i am a strong introvert.  Lately toward late afternoon and evening i just dont have that energy.  it seems my ability to understand (and to reflect unconditional love for each being sharing this universe) is beginning to have an expiration “time-of-day” (instead of an “expiration date”).

It is now 3pm and AGAIN … my symptoms are swinging.

Is it because over 600 persons with Dementia in social networks  is just too many individuals for my introversion-energized self ?  (i have thought of this & have eliminated listings of most folks who do not actually have dementia themselves, but cannot bear to sacrifice any friendships among those who share dementia symptoms.)  Is this from intensive “thinking” work on too many social projects during morning and early afternoon ?  Maybe partly because less sunshine outside, so should check levels for vitamin D ?  Maybe fighting a flu bug ??  All worth consideration, but regardless of why these are showing up NOW, probably indicates future “new normal”, so i need to be thinking about strategies, and preparing to best LIVE with the new symptoms.

Particularly disturbing because every time my name is spoken i am reminded of the importance of Truthful Loving Kindness in all my interactions.  this is absolutely crucial to me!!

THANKSgiving for patience of others, when our own patience disapears.
THANKSgiving for understanding of others, when our own understanding disapears.

… But tomorrow will be a new day
… if i can get some rest will have new energy.
I will think about strategies tomorrow (and remainder of week).
Another blog entry on the installment plan.  (Almost all of them are, these days, LOL.  )

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Strategies:

Continue efforts at nap early enough to not interfere with night sleep.

Ask doctor to check vitamin D levels, and make every effort to get sunshine.

Maybe some of those bulbs that are “full spectrum”.

Limiting online connections (social networking like FaceBook) to mostly mornings and early afternoon, then do activities that are less relationship-intensive.

Praying husband finishes installation of woodstove soon; nothing says i have arrived “home” like the smell, sound, and sight of a wood fire.

2026 update: Over the years, I’ve learned that my afternoons have continued to change. For me, the biggest shift now is language. After about 3:30 p.m., understanding and using words takes much more effort. Conversations become harder to follow, and finding my own words becomes increasingly difficult.

Because of that, I naturally gravitate toward activities that don’t depend on language. Quiet, solitary art is often my best companion. I also enjoy crocheting—as long as I’m working from skills I already know and don’t need to follow verbal tutorials or spoken instructions. Instrumental or a cappella music is especially calming because I can enjoy the music itself without my brain having to untangle lyrics.

One of the lessons Lewy has taught me is that it’s often more helpful to work with my changing brain than to keep fighting it. By late afternoon, I don’t need more words. I need less language, more quiet, and activities that allow me to simply be present.

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LINKS:

Need for Nap by Tru at >> https://truthfulkindness.com/2018/06/04/need4-nap/ ;

What They DONT Tell You about Dementia by Laurie Scherrer at >> https://dementiadaze.com/2018/04/14/what-they-dont-tell-you-about-dementia/ ;

A short video from Teepa Snow at >> https://www.youtube.com/watch?v=6coRTwkOt_Y ;

An article from Teepa Snow PAC organization at >> https://teepasnow.com/blog/3-tips-for-managing-sundowning-in-dementia-care/ ;

Night complications with Lewy Body Dementia at >> https://www.lewybody.org/information-and-support/information-leaflets/managing-sleep-disturbance-in-lewy-body-dementia/ ;

Lewy Resources at >> https://lewybodyresourcecenter.org/caregiving-support/caregiving-support-new-york/ny-sundowning/ ;

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 2019Feb11. No idea on how many hrs invested on txt, but worked on it and/or graphic every day for 6 days. Graphic was sourced from Casey Horner on Unsplash.   Tags are: dementia, fatigue, irritability, PLwD, strategy, sundowning, symptom.

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((Previously, i had a notice here at base of each entry with announcement and Logo for HealthLine 2019 Best Alz Blogs.  To my surprise, after HealthLine contacted me in January with fact that i was included in 2019 Best Alz Blogs, then announcing it publically on March 18, ten days later they decided against including writers with Mild Cognitive Impairment, and removed this blog from their listing, leaving only one first-person perspective.  Now i am deleting each of those announcements of my inclusion on HealthLine Best Alz Blogs for 2019.  i hope they soon decide to include at least one other first-person perspective in their “Best Alzheimers Blogs”.)) >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

 

Exhausted from Dreams

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One step at a time.

2026 update: We have now discovered that if Lewy Body type of dementia is present, these are not called nocturnal hallucinations.  Recently found that for ME, these fall under the umbrella term of RBD, aka REM sleep Behavior Disorder.  Some aspects of this disorder have been controlled with medication since shortly after the 1997 onset, but again became more noticeable recently and required an increase in medication.  Made no changes to 2019 blog entry; only adding this preface.

Tru here at 5am.

Another 5-installment night of more-real-than-daytime dream experiences of action/horror which are so very common with those who have Lewy Body Dementia symptoms.   These particular installments (much like episodes of a TV show) were figuring strategies to best live with progressive physical and mental disfigurement (literally “dripping away” of physical self, and extreme aggression as most difficult symptom of mental disintegration).  It was universal and progressive, involving all people and animals.  Thru trial and error, in the dream we discovered that best coping strategy was music for humans, and rhythm-vibration for animals.

i was unsuccessful in my dream, in that our strategy did not arrest or even slow progression, but was very rewarding to discover strategy to help continue relationships (even tho it is just in my dream-world).  Then i woke.

Very good chance that when i finally fall asleep tonight, dreams will continue with more episodes from the same environment.  That is often how it goes.

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Several years ago, my psychiatrist pointed out that most of my dreams have a strong consistency; they usually involve me helping others in a disastrous environment.  There is almost always blood and guts, but that is not surprising with gunshot murder, rape, etc in family history.  The primary issue is that i can almost always make a DIFFERENCE in my dreams.  Even when generally unsuccessful, there is some positive impact, whether solo or as part of a team.  As he pointed out, this is very consistent with my life goals.  It makes sense, and, in a way, gives strength to (or reflects) HOPE in my life.

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Unfortunately, all these stressors, violence, and action during the night do not produce restful renewal from my daytime efforts.
i wake simultaneously encouraged … and feeling more exhausted than when i went to bed.

day-time work, then night-time work, then day-time work again, etc.

Sometimes i feel absolutely desperate for energy-giving rest.  Daily nap is crucial.

Gotta take it one day at a time, one hour at a time,
… and one STEP at a time. 

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Not really any tips here, altho very glad i have extensively discussed this with an “expert”.  Gives confidence that i have done what i could to address the issues (and he was surprised even to begin with, stating i had adjusted well to past and current trauma).

UPDATE: Lately if i wake with the horrid night hallucinations, i will
1: get up (actually move location);
2: Take three deep cleansing breaths;
3: breathing meditation for about 3-5 minutes;
4: Take three more deep cleansing breaths.
Then i might try going back to bed immediately afterward, or i might then go into some longer meditation,
again ending with three cleansing breaths, before i try sleeping again.

Perhaps reading this can help someone with similar symptoms see that they are NOT alone,
or help a care-partner better understand exhaustion of the person with dementia.

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Related Links.
Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish.
Remember, Links are on colored text, NOT the pictures.

Impact of Terror and Dreams >> https://truthfulkindness.com/2016/01/19/impact-terrors-dreams/

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Sleep Problems Again >> https://truthfulkindness.com/2016/03/23/sleep-problems-again/

My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Most recent are here >> https://truthfulkindness.com/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 2019Feb04. Graphic was sourced from Natalia Kollegova on PixaBay & a PicsArt sticker.  7hrs invested.  Tags are: dementia, dreams, hope, horror, PLwD, strategy, symptom.

MyFreeCopyright.com Registered & Protected

((Previously, i had a notice here at base of each entry with announcement and Logo for HealthLine 2019 Best Alz Blogs.  To my surprise, after HealthLine contacted me in January with fact that i was included in 2019 Best Alz Blogs, then announcing it publically on March 18, ten days later they decided against including writers with Mild Cognitive Impairment, and removed this blog from their listing, leaving only one first-person perspective.  Now i am deleting each of those announcements of my inclusion on HealthLine Best Alz Blogs for 2019.  i hope they soon decide to include at least one other first-person perspective in their “Best Alzheimers Blogs”.)) >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

 

Frosty and Fragile

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Tru here regarding symptoms of fatigue and inflexibility.

Frosty.
Fragile.
— cool, crisp, and crinkly.

Energy spent,
so At the moment
I am at the end of my flexibility,
… in schedule adaptability
… and in communication.

Needing to renew
but Spring feels a long way off.

.*.

Time to
minimize amount of tasks,
minimize task complexity,
… and time to maximize appreciation of EACH moment,
in whatever way those moments might take form.

Time for slow soak in tub.
Time for music.
Time for SLOWLY creative moments.

Time for warm hugs, quiet words … and mugs of hot chocolate,
while sitting in front of a crackling fire.

Time to enjoy some special moments with YOU !!

— Truthful L. Kindness
23 Jan 2019

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Those moments might be in person, but they might be in video chat … or even a card or letter.  But at times like this i personally need very quiet, close relationship, … or prayer and meditation.  Because for ME, relationship makes life worth living.

Each person is different, and someone else might need perky pick-me-up.  But for ME perky pick-me-up would be entirely exhausting at this stage, leaving me in worse condition than i started.

What about YOU ??

.*.

This blog entry began with photo posted by a PLwD friend, Wendy Mitchell.  (PLwD = Person Living with Dementia.)  Tried to nap after i saw the photo, but instead words started spilling out, desperately needing a place to settle.  So the words settled on this page, and it is lovely to create … again.  ((smile)).  Photo with permission from Wendy Mitchell.

..

Teepa Snow on Gem Stages of Dementia at

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Related Links.
Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish.
Remember, Links are on colored text, NOT the pictures.

Bad Day suggestions >> https://truthfulkindness.com/2018/04/09/bad-day-indicators-suggestions/

Myrna’s suggestions >> https://truthfulkindness.com/index-persons-with-dementia-pwd/myrna-norman/bad-day-suggestions/

My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Most recent are here >> https://truthfulkindness.com/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 2018Jan28. Tags are: dementia, fatigue, inflexibility, strategy, symptom.

MyFreeCopyright.com Registered & Protected

((Previously, i had a notice here at base of each entry with announcement and Logo for HealthLine 2019 Best Alz Blogs.  To my surprise, after HealthLine contacted me in January with fact that i was included in 2019 Best Alz Blogs, then announcing it publically on March 18, ten days later they decided against including writers with Mild Cognitive Impairment, and removed this blog from their listing, leaving only one first-person perspective.  Now i am deleting each of those announcements of my inclusion on HealthLine Best Alz Blogs for 2019.  i hope they soon decide to include at least one other first-person perspective in their “Best Alzheimers Blogs”.)) >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

 

Perspective of HOPE

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What creates HOPE in your life ???

How can you create PATHS to fulfill that hope?

What SUSTAINS that hope in your life ??

Tru here.

In my life, regardless of the struggles during any individual day,
HOPE is a necessary part of that day.
Hope is crucial to retaining enthusiasm for life during that day.

Webster’s Dictionary says hope (as a transitive verb) is
1. to desire with expectation of obtainment or fulfillment ,&
2.  to expect with confidence .

Hope is an ACTIVE process of keeping my life in a positive frame of reference.

…

Like too many others, there has been a lot of violence in my family’s experiences.  And coping with my progressive brain decline adds almost-constant discouragement and frustration from a constantly-changing “New Normal”,
So …

To keep a larger perspective
it is crucially important to have a note of “HOPE”
in each movie i finish,
in each book i finish,
and in each song i listen to.

If the movie, book, or song seems to lack hope, i quickly drop it; i do not finish it.
And only those items which convey a strong note of hope (in some manner) are retained in my library.

I try to spend more time with friends who look at life with hope,
than time with friends who no longer have hope in their perspective.
… Otherwise the relationship drain becomes too costly for myself.

I have no desire to lose motivation for life,
so i strive to keep hope in each part of EVERY day.
I cannot afford to lose sight of hope in my perspective.

I think most people’s lives are filled with
astonishing abilities AND dys-Abilities (usually unrecognized & un-addressed),
… joy AND sadness,
… exhilaration AND suffering,
But too often we do not recognize those conditions in the folks around us,
because the avenues of their experiences do not match our own.
We only see and experience our own events,
so that becomes our context.

First time i read Stephen Covey’s “7 Habits of Highly Effective People” was about a decade before my dementia symptoms became noticable.  Actually, as one of my most-frequently-read (and written-in) secular books, eventually, i copied each page and put in 3-hole binder.  i forget the title of chapter, but one of the chapters gave instructions to visualize your own funeral;
Ideally, what would you like to hear there, about your “fulfilled” life ?

This was my major tool for determining what my own “fulfilled” life would look like.
My own purpose (or HOPE) in life is
to reflect Truthful Loving Kindness in my life and interactions;
written and oral, spoken and un-spoken, public and intimately intensely personal,
and finally (but crucially important) … seen and unseen.

So my “hope” is for opportunities to fulfil that goal in various ways.

i can only control myself,
so  i strive to become informed in how i can best reflect Truthful Loving Kindness
to myself and others,
because relationships are what make life worth living.
i prioritize my time, funds, and energy with that goal as very high priority.

Dementia symptoms change the pathways for that goal, but make absolutely no change on goal itself

.*.

Above is my own answer to the preface questions.
So …

What creates true hope in YOUR life ???

How can you create paths to FULFILL that hope?  And …

What SUSTAINS that hope in your life ??

Related Links.
Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish.
Remember, Links are on colored text, NOT the pictures.

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I am From … >>  https://truthfulkindness.com/bnp/part-1/intro-from-tlk/

HOPE in Wiki >> https://en.wikipedia.org/wiki/Hope

My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Most recent are here >> https://truthfulkindness.com/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 2019Jan21. Blog entry began 11Jan2019 and finished text on 21Jan2019.  Tags are: dementia, goal, hope, perspective, PLwD, strategy.

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((Previously, i had a notice here at base of each entry with announcement and Logo for HealthLine 2019 Best Alz Blogs.  To my surprise, after HealthLine contacted me in January with fact that i was included in 2019 Best Alz Blogs, then announcing it publically on March 18, ten days later they decided against including writers with Mild Cognitive Impairment, and removed this blog from their listing, leaving only one first-person perspective.  Now i am deleting each of those announcements of my inclusion on HealthLine Best Alz Blogs for 2019.  i hope they soon decide to include at least one other first-person perspective in their “Best Alzheimers Blogs”.)) >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

 

 

Book Revw “Dementia from the Inside”

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SUMMARY

Insightful Book with “Inside Perspective”;

Tru here.  I think “Dementia from the Inside” , written by Dr Jennifer Bute (with Louise Morse) is helpful for anyone open to Christian perspective who is involved in any way with Persons with Dementia.

Like many others who are now experiencing dementia symptoms, I wish that I could have had this “inside perspective” of more deeply understanding dementia symptoms, much much earlier.  For me, understanding better could have enriched my relationships with two grandmothers who had dementia.  Together we could have extended the time of verbal communication, as well as assisting with non-verbal communication.

That is a big part of why I write a blog, and here is an excellent BOOK to assist others in those relationships.  An added impetus, for me, is better understanding a wonderful mentor for myself, Jennifer Bute.  Looking forward to our next video chat, my friend.  – Truthful Kindness.

.*.  …  .*.  …  .*.  More Details on Book .*.  …  .*.  …  .*.

Tru here.  I bought paperback version of this book thru publisher, then kindle version thru Amazon.  Took a while to read it thru, but the book is broken into smaller sections, and i used Kindle tools to make it easier for me.  Very VERY glad i invested funds, time and energy in this book.  It is a treasure.

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Perspective is key issue for how any person deals with dementia symptoms or diagnosis, so Jennifer begins her book with her own perspective; largely SPIRITUAL perspective.

We have not spoken of it much (or i have fogotten), but discovered both Jennifer and i have the unusual theory that as cognition becomes more limited, the person with dementia often becomes more aware of the spiritual realms of life.  in this book, Jennifer speculates that this may happen because inhibitions or social assumptions are removed.

From the outset, we both saw our own cognitive decline as a gift from Creator.  I wrote about it in 2012 >> https://truthfulkindness.com/2014/07/16/faith-dementia/ , and Jennifer mentions, “How we walk with God, our heart attitude, is what matters, not what we do for Him.  My heart said, ‘Well Lord, here I am with Alzheimer’s: I accept this as an unexpected gift from you, an opportunity to understand dementia from the inside’.”

MeltDown is always difficult experience for both person living with dementia and those around that person during the event. Jennifer says, “There is always a reason why people with dementia have ‘meltdowns’.  It could be sensory overload, tiredness or simply things becoming too much.  Being in hospital is top of the list: it ticks all the boxes.”  After listing seven situations that can precipitate her own meltdown, Jennifer says, “The meltdown behaviour of other people with dementia reflects how they were when they were little … whatever the behaviour, it reflects the vulnerability of a child.”

“If I’m confused, reassure me, but don’t overwhelm me with words — show me what I should do.” — Dr Jennifer Bute in “Dementia from the Inside”.

Enabling Speech is one of my favorite sections of this book, where Jennifer says, “I have found there are five main ways of helping those in the later stages of dementia to talk, when others assume they no longer can — it is such a joy!  The key words here are music, singing, laughter, and parallel and convergent speech.” … and she goes on to describe the techniques.

Some other jewel-quotes from Jennifer’s book are:

“Each new difficulty is an opportunity to find new coping mechinisms.”

“If I don’t recognize you, please remind me who you are, and in what context I know you, and if necessary give me additional clues”

“If I look lost or bewildered, I probably am.  Please help me … ”

“We pick up your mood, whether you are calm or agitated. (This is known as mirroring.)”

… and three Principles:
“1 There is always a reason why a person is behaving in a particular way.
2 When facts are forgotten, feelings remain.
3 Familiar patterns of behaviour continue.  Knowing these principles can help explain puzzling behaviour and improve communications.”

.

This book clearly shows that there can be meaningful, joyful life WITH dementia, and gives suggestions of how to either live that life, or assist others in living that life.  Wise investment of funds, time, and energy.

Related Links.
Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish.
Remember, Links are on colored text, NOT the pictures.

.

Jennifer’s index page on my blog is here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/

My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Most recent are here >> https://truthfulkindness.com/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 2019Jan14 (altho Jennifer has copyright for all quotes on this page). Tags are: book, dementia, Jennifer Bute, PLwD, strategy, symptom.

MyFreeCopyright.com Registered & Protected

((Previously, i had a notice here at base of each entry with announcement and Logo for HealthLine 2019 Best Alz Blogs.  To my surprise, after HealthLine contacted me in January with fact that i was included in 2019 Best Alz Blogs, then announcing it publically on March 18, ten days later they decided against including writers with Mild Cognitive Impairment, and removed this blog from their listing, leaving only one first-person perspective.  Now i am deleting each of those announcements of my inclusion on HealthLine Best Alz Blogs for 2019.  i hope they soon decide to include at least one other first-person perspective in their “Best Alzheimers Blogs”.)) >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

 

Adaptations for Dressing

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Tru here on clothing.

At current stage, these adaptations work for my clothing needs:

Heart symbols on inside top back of most all clothing including underwear (but not socks or turtlenecks) in order to orient where the piece of clothing belongs on my body.  Turtlenecks have a piece of yarn or ribbon inside back of neck, so they can be hung on a hook.

Underwear and socks always the same color and brand, minimizing frustration with finding matching socks, and routine is always the same for dressing.  Background for writing date on underwear is here >> https://truthfulkindness.com/2017/10/23/dementia-underwear/

Leave wardrobe doors open, reminding me that I have clothes behind the doors.  Leave drawers open on graduated basis for the same reason.  This helps tremendously when setting out my clothes for the next day.

Clothes set out the night before, (draped over the pink tray on my walker).  sometimes need assistance for which turtleneck (and possible overshirt) would be appropriate given schedule and weather forecast.

With few exceptions of travel in warmer locations, I only wear two kinds of tops; winter or summer turtleneck – often purple.  sometimes with some kind of button-up vest, overshirt, sweater, or jacket .  This keeps me in the routine. Tomorrow participating in recorded video chat for teaching purposes, so wearing purple turtleneck with flannel over-shirt.

For normal schedule, pants are all the same brand & item #; black jeans made by Lee, with elastic waistband.  This only varies if i am traveling for family or speaking engagement.  Unless special occasion i wear one of two pair of shoes.  One pair is Mondays Wednesdays & Fridays … but the other pair is same brand, same model, just black instead of purple elastic ties.  Those i wear on alternate days.  So look at my cell phone to identify the day of the week and that is solved.

My clothing variety is anything worn over my turtleneck, and what i wear on my head.  Often there is nothing worn over my turtleneck, and only a snood on my head.  But i avoid time with a mirror, (looking at myself is uncomfortable because i dont remember getting older) and it doesn’t matter to my husband.   i try to use a little more variety on the week-ends, when he spends more time at home.

Currently searching for extended “collar” patterns that are easily changed several times a day, since i seem to have a hole in my lip, LOL.  Will share those later.

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My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Most recent are here >> https://truthfulkindness.com/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness on 2019Jan07. Tags are: clothing, dementia, dressing, PLwD, strategy.

MyFreeCopyright.com Registered & Protected

((Previously, i had a notice here at base of each entry with announcement and Logo for HealthLine 2019 Best Alz Blogs.  To my surprise, after HealthLine contacted me in January with fact that i was included in 2019 Best Alz Blogs, then announcing it publically on March 18, ten days later they decided against including writers with Mild Cognitive Impairment, and removed this blog from their listing, leaving only one first-person perspective.  Now i am deleting each of those announcements of my inclusion on HealthLine Best Alz Blogs for 2019.  i hope they soon decide to include at least one other first-person perspective in their “Best Alzheimers Blogs”.)) >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

 

Floating Words

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Problems understanding spoken sentences (verbal comprehension):

Floating Words

Words float around and past me.

sometimes they splash against my body.

i hear them spoken.
i understand each word.

I reach for them,
but mostly they just float around me without joining;
without coalescing into concepts that i can grab, hold, and understand.

Sometimes i am able to grab a passing thought and hold it;
finally understanding,
responding to the speaker and building relationship …
… but then it is gone again.

Words float around and past me.

Sometimes i feel alone
… and require visuals or TOUCH.
—  © Truthful Kindness
2018 Dec 11

 

“Hold My Hand to ANCHOR me” is another piece of prose, at this Link >> https://truthfulkindness.com/2014/11/07/hold-hand-anchor-me/

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During 2018, this has gone from a rare occurance … to part of my “new normal”.
First experiences were very scary !!!  They can also build huge relationship misunderstandings;
It is not that i am purposely “checking out” from conversation, i just cannot understand what is said.

Not just myself, but everyone in the relationship needs to:
Grieve the partial loss of another ability; another tool in our relationship toolbox.  Accept that partial loss.  Then strategize to make the best of remaining abilities for rich relationships as long as possible.

At this point,
1) give me some time and verbal comprehension may click back into place.
2) My visual processing is still good right now (even if reading comprehension is not), so try graphs, charts, and pictures of what you are talking about.
3) If not, i probably need a nap, because trying to understand words into concepts is a lot of work for me now.

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Dec 2018, my guess is that 25-30% of my social time is spent with little understanding of concepts spoken.  It is just disconnected words.  Mostly i “read” tone of voice and face/body expression.  Sometimes i just sit in video chat, watching everyone, and just BE with them even if i do not understand what is said.  In those cases, it is embarrassing when asked a question, because i had been unable to follow the prior conversation, and now it will be obvious.
It is not that i don’t care, i am simply losing that ability.

Sometimes written is better (partially because i can read it over and over again) … and sometimes it is not.

♦  Everything changes  ♦

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Very thankful that i can still compose written concepts — even if i may not understand what i wrote, LOL.

Summary: Written comprehension has been compromised for years, but now verbal comprehension disabilities are a quickly-increasing part of my “new normal”.
Communication input is becoming strongly compromised, but written output of communication is still mostly intact, and i very much rely on that tool.
Family and others need to begin reading what i write, if they wish to retain close relationship.

Related Links.
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will allow you to return to this tab easily (at top of window) when you finish.
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Hold My Hand to ANCHOR me >> https://truthfulkindness.com/2014/11/07/hold-hand-anchor-me/

No Meanings for Words >> https://truthfulkindness.com/2016/09/06/no-meaning-for-words/

Importance >> https://truthfulkindness.com/2016/01/26/import-communication-pwd/

Communication Part 1 of 3
by Truthful Kindness (Factors of Environment, Content, and Timing) at https://truthfulkindness.com/2014/12/12/verbal-comprehension-strategies-1/ ;

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* Admin issues:
This is another entry that i needed considerable amount of help from my husband on both explanation & photo.  Featured photo was taken with foam letters floating in pool at CV Starr Center, in Fort Bragg, CA.  SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © 2018Dec11. Tags are: communication, dementia, PLwD, relationship, symptom, verbal comprehension.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Tinnitus and other Auditory Hallucinations

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Tru here.
Auditory hallucinations (paracusia) are hearing sounds without auditory stimulus, and “tinnitus” is personal perception for sound of constant ringing, clicking, etc … without auditory stimulus.  Many causes.

Not all folks with dementia symptoms have tinnitus or other types of auditory hallucinations, but i think it is more prevalent in that population.

TINNITUS

My tinnitus began about 14yrs ago (2004, after cognitive symptoms were showing in my processing speed and a few other areas, but not nearly as advanced as now).

some days it is louder than others. Sometimes it is a roar, and sometimes just a constant fuzz. Worst is when the tones fluctuate (like today). Fluctuating tones create more problems understanding when other folks talk.

In my first years with this constant sound, it was difficult to focus on anything other than the constant sound.  i could not even sleep (and sleep is crucial to brain cell renewal).  Tried ear buds but they did not stay in during sleep, so went “old school; i bout a stackable DVD-music player that would allow as much as 12hrs of “background” music.  Three 4-hr disks and i was able to disrupt the tinnitus with something peaceful.  After a couple years i grew accustomed to the sound in my head, and no longer needed the distraction.  This was 10yrs ago, so it may be possible now to play 8-10hrs of nature music on a hard drive.

OTHER Auditory Hallucinations

Apparently tinnitus is considered a form of auditory hallucination, and may be more prevalent with Semantic Dementia (form of Fronto-Temporal Dementia).  I had a couple auditory hallucinations before tinnitus became an issue – even before any cognitive dys-abilities were noticeable.

During 1994-1998 I was waking up on the floor, so husband built a fitted bar to hold me in the bed. I had two or three events of auditory hallucinations during those years.  I heard muffled voices when there was no source, and in different locations (which are Lewy-Body-type symptoms).  Checked for possible radio, etc, but no source for the sounds which lasted several minutes at a time, and sometimes multiple times in stretch of a couple hours.  It was very scary.  It was not until I was writing this blog entry that I realized those were my first auditory hallucinations.

Tinnitus began about 2004, and other auditory hallucinations began about 2007.  I heard music and (again) muffled voices.  Sometimes these occur pretty regularly, but I have not had an auditory hallucination for over a year now (unless I have forgotten them).

Since smell and then sight hallucinations developed (sometime after 2010) that relegated sound hallucinations to much lower priority in my attention, so mostly I successfully ignore them.

Related Links.
Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish.
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819 blog 20150810a 4in100ppi…

… Sound Dis-orientation >>  https://truthfulkindness.com/2015/08/11/sound-disorientation-dementia-symptom/

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News-Medical.net 2017Aug26: Tinnitus, a chronic ringing or buzzing in the ears, has eluded medical treatment and scientific understanding. A new study by University of Illinois researchers found that chronic tinnitus is associated with changes in certain networks in the brain, and furthermore, those changes cause the brain to stay more at attention and less at rest. …  Using functional MRI to look for patterns across brain function and structure, the new study found that tinnitus is, in fact, in the hearers’ heads — in a region of the brain called the precuneus, to be precise.  https://www.news-medical.net/news/20170826/Chronic-tinnitus-linked-to-changes-in-certain-brain-networks.aspx

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Auditory hallucinations: Patients with semantic dementia commonly report tinnitus (an elementary auditory hallucination), linked to structural alterations in a fronto–temporo–subcortical network [5]; while hallucinations of ‘muffled’ sounds or voices are often reported by patients with Lewy body dementia, frank verbal hallucinations are uncommon and generally occur as a component of more complex, multimodal hallucinations [59]. In contrast, persistent musical hallucinations (typically comprising familiar, banal tunes) are relatively commonly reported in patients with Lewy body disease and less frequently, other dementias [60] … https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5065893/

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My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Most recent are here >> https://truthfulkindness.com/


* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © 2018Dec11. Tags are: dementia, hallucinations, PLwD, strategy, symptom, tinnitus.

Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

When Stressed I WALK

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began when i was quite young.  When words no longer work — i walk !!!

One of my first consequences of this was as teen.  I took off, got lost, & search team found me early the next morning in the deep woods.

When words no longer work and i am under deep emotions such as anger, frustration, or embarassment.
I am consumed with need to leave.
It doesn’t matter where i am going,
but i must … GO !!!

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In past few years i was able to use my canes, but now need my long-stride walker (kept on the porch), and i am gone.

Where i live, i dont think this will be a problem, because from our house i have never walked toward town.  i walk toward the harbor.  Only two houses between us and the harbor, and it leads to  blacktopped-path that goes in a loop to the end of our penninsula.  I can walk the loop twice or three times without leaving familiar territory.  I walk off the energy generated from anger or frustration.

But realize that as my symptoms progress, it is important to document these quirks, and set guidelines to avoid future problems.

  1. Let someone know where i am going.
  2. Always carry locator (for me that is GPS on my cell phone, but for others might be another device).
  3. Try to be consistent on where i go (always same walking path) so muscle memory can help my return trip.
  4. If needed, i can walk the loop more than once.

My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Most recent are here >> https://truthfulkindness.com/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © 2018 Dec 10. Tags are: dementia, PLwD, strategy, symptom, wandering.

Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

New Pages Nov 2018

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Tru here.

Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish.
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Pages recently added to my blogsite are :

First page in new Memorial section is “Susan Suchan’s Legacy” >> https://truthfulkindness.com/memoriam/susan-suchan/

and another Family History page, in honor of 1st Thanksgiving celebration >> https://truthfulkindness.com/about/life-other/family-history-index/gov-bradford/

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My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Most recent are here >> https://truthfulkindness.com/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”..

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year