Stability and Landmarks

This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words. 

Feels like my INTERNAL Landscape is losing its Landmarks (aka anchors). 
The happenings of life are overcome with Shades of gray and there is nothing to orient myself.  The convoluted nature of everything from fact to fiction is very confusing for me now.  And “change” is equivalent to earthquake.

in fiction stories or news stories, i NEED something to identify the “good guys” from the “bad guys”; i need some kind of orientation or pattern in order to process what is happening.  but instead everything is just kind-of … gray. 

Mostly i am now sticking with stories and films that i have seen and enjoyed in the past; which gives me a framework for watching the story again.  if i have only watched it a couple times then i need husband nearby for when i ask “is that person a good guy?”.  There is comfort in watching a show or reading a story that has familiar characters — then i am no longer relying on my fast-disappearing short-term memory in order to orient in the story. 

Repetition and pattern is crucial in my life, because it promotes stability and orientation.

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Please do not move my belongings, because those items are not un-necessary, even IF everything in that stack was actually “useless” (which it is NOT).  That stack is a Landmark for where i find the tools that i use.  It is needed as a Landmark.  My mind-picture of that “pile of junk” is what i go past, then immediately turn right in order to find the mind-picture of the tool i am Looking for.  When that pile changes in height, width, shapes and colors, then i cannot find my tool that belongs just to the right of that stack.  … it gives me orientation in the gray mass of physical Landscape.

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i cannot seem to keep anything organized in my mind, and i am almost frantic for consistency and dependability. 
My world is a sea of swirling change in my abilities and perceptions.

so it is no surprise that i FEEL more clingy… i dont recognize the way you LOOK, but as long as you are doing the things that my husband does, or talking, then i recognize you are my husband.
— You are my anchor; you are a known quantity and i rely on you not only for food and love, but for keeping my world as stable as possible.

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Links:

Frosty and Fragile” by Truthful Kindness at >>  https://truthfulkindness.com/2019/01/28/frosty-and-fragile/ ; and https://truthfulkindness.com/2014/11/07/hold-hand-anchor-me/ written 13Sep2012;

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For early-to-moderate stages i have gathered LINKS for dementia symptoms and Strategies (alphabetized) at >> https://truthfulkindness.com/about/d-info/links-sx-strategies/.  

. For more advanced stages Teepa Snow has excellent series called “Making Visits Valuable” beginning at >> … and Listing at https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX .

* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  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 22May2022. 527KB Digital painting copyright Truthful L. Kindness on 19May2022 (dn frm 1319KB). Used ProCreate ap with Apple Pencil 2 on iPad. Background done with Liquid tools, and foreground with default brushes.
i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: alzheimers, confusion, dementia, mood, pattern, person with dementia, PLwD, routine, symptoms, strategy.  S&S categ: comfort, confusion, home, inflexibility, mood, planning, preferences, reading, routine.

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March Pages Added

This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com ,
so PLEASE address any questions or comments to that website, regardless of which website shows these words. 
In addition to any blog “entries” during March, Word Press has blog “pages” (which go into different categories at the top of the window).  This particular entry is Links for pages posted and Art Projects during March 2022.

!!  Remember, Links are in underlined colored text, not the pictures  !!

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 in colored text, NOT the pictures.

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“Too Many Choices” by my friend Michelle Montgomery at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/michelle-montgomery/multiple-choice/

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Links and Excerpts re LvPPA (Logopenic varient of Primary Progressive Aphasia) at >> https://truthfulkindness.com/about/d-info/variants-ppa/excerpts-sx-lvppa/

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… and that is it for new “pages” although i have posted four new “entries” this month;
06Mar2022 was “Care-Partnering is a Three-Legged Stool” at >> https://truthfulkindness.com/2022/03/06/care-partnering-stool/
13Mar2022 was “Living Well with Dementia” at >> https://truthfulkindness.com/2022/03/13/living-well-with-dementia/
20Mar2022 was “Appearance of ‘Lying” at >> https://truthfulkindness.com/2022/03/20/appearance-lying/ .  and
27Mar2022 was “Taste Almost Gone” at >> https://truthfulkindness.com/2022/03/27/food-taste/ .

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New Art:

TearSilkiC Tens 20220314//embedr.flickr.com/assets/client-code.js  14Mar2022;  i see that i signed it with the wrong date, LOL !!!  Clicking on the picture above will take you to HiRes copy of this “Growth Thru Tears” digital Painting at my Flickr Acct.  From there, you can see details on creating the painting, and if you click on picture, you can see greater detail of the painting itself.  https://flic.kr/p/2n8ESXt .  Have not used it in any blog entries or pages … yet …

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threeLeggedStool 20220301a//embedr.flickr.com/assets/client-code.js 01Mar2022; Clicking on the picture above will take you to HiRes copy of this “Three-Legged Stool” digital Painting at my Flickr Acct.  From there, you can see details on creating the painting, and if you click on picture, you can see greater detail of the painting itself.  https://flic.kr/p/2n6tHp6 .  Used in “Care-Partnering is a Three-Legged Stool” at https://truthfulkindness.com/2022/03/06/care-partnering-stool/ .

Both of these above art projects began with a “Silk” project, then was enhanced with ProCreate, and finalized with help from “raise” tool in iColorama.  More info on “Silk” application at this page >> https://truthfulkindness.com/about/life-other/arts-crafts/apps/silk/ .

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  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 30Mar2022. Picture copyright Truthful Kindness on 14Mar2022, using Alaina Jensen MultiMedia brushes in ProCreate app.  i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: na .  S&S categ: na .

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Food; Taste Almost Gone

This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words. 
“Smell and taste are often reduced in dementia.”  — Psych Today 07Mar2021.  Tru here discussing loss of taste for food.  The medical term for complete loss of taste is ageusia. There is also a partial loss of taste, or unpleasant perception of taste, called dysgeusia.

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For ME, loss of taste was a gradual thing.  The first taste i lost was that yeast-y taste from doughnuts and some ultra-fluffy breads.  After a life-time love-affair with doughnuts, these yeast wonders were no longer worth even periodic break in my gluten-free way of life (due to Celiac).  The anticipation was there, but no reality and fulfillment of the anticipation when i actually ate a doughnut.  That began about 2018.

Next big noticeable taste lost was CHOCOLATE !  Baking chocolate is still one of the primary ingredients that go to make my high-protein drink.  The mouth-feel of hot chocolate is incredibly comforting for me, even though i quit tasting it in 2020.

By early 2021, i noticed that any Leftovers usually tasted like cardboard.  That included poultry and beef (i dont eat pork), and most vegetables.  But at that time i could still taste almost all spices, so corned beef, bar-be-cue sauce, and condiments really helped the taste issue for eating food.  … and i could still taste many fruits.  By the end of 2021, i had lost the taste for the yummy things in fruit tho.  The only remaining taste was acidic and yucky.

Now (2022).  i have basically lost all taste, freshly cooked or Leftovers.  Meats (and fish), Vegetables, Fruits, and even my biggie — Dairy.  i have always been a milk baby, and that was a crushing loss — along with, of course, ice cream !!!  i can still taste (or FEEL ?) the vinegar in catsup and mustard — but they have no difference to each other. 

Cardboard; i eat sometimes sweet or salty “cardboard”, (CaramelCorn) but all food tastes like cardboard.

Probably not considered “food”, but i can still taste a few pretend flavors — like some of the crystal light water flavors.  So that is very helpful – for as long as it lasts.  Update Apr2022: Crystal Light Lemonaid flavor is now distorted and yucky, but Sunrise Orange still tastes good, and can be used in cooking also.  Update Monday morning 06Jun2022: i had an event this morning and now Sunrise Orange flavor is also distorted and yucky — i taste something, but it certainly is not good.  However, have discovered “Black cherry herbal tea” still tastes good.  Funny that in each of these cases, the actual fresh fruit taste was distorted BEFORE the pretend flavor for that fruit.  i wonder if that is consistent among folks who lose taste sensation ?????

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This is a big loss, and i am allowing myself to grieve.  Mostly, no; i dont even remember the tastes, but i remember the feelings that accompany eating these foods.  The wonder of a doughnut, and the exotic notes of pineapple.  Unfortunately eating is much more WORK now that there is no taste,

Also, each bite is a fresh, brand-new disappointment, because
even though i rationally know that i will not taste anything,
i am still Looking for a taste with each bite, and there is
… nothing.

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…  But now, as always, i need to re-focus on what remains, instead of what is lost.  

Since taste is no longer an issue, most of my foods can go in my fingers or a mug. 
… and no need for variety, because i have no memory of what i ate on previous days (or even today, LOL). 
i am drinking more of my protein drink, but still sitting at table with husband.

 

COMFORT Food:
The mouth-feel of chocolate, and
the feeling of milk coating my throat and stomach. 
These are things that remain, and still bring comfort. 

Borscht is a banquet of textures, and Broccoli Bisque is ever-so-smooth with creamy green thickness.  Both are brightly colored, and easily eaten from a mug.  So these vegetable soups are my main foods, other than my protein drink mixture.

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LINKS:

“Smell and taste are often reduced in dementia.”  — Psych Today 07Mar2021 by neurologist Andrew Budson MD at >> https://www.psychologytoday.com/us/blog/managing-your-memory/202103/when-dementia-diminishes-smell-and-taste ;

Also see Nov2021 >> https://www.ncbi.nlm.nih.gov/books/NBK549775/ ;

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… and you might want to check out the “FOOD” Links gathered for Dementia Symptoms and Strategies (alphabetized) at https://truthfulkindness.com/about/d-info/links-sx-strategies/.  This includes my past entries on this topic, along with  “Food” entries from Agnes Houston, Barry Pankhurst, Greg O’Brien, retired doctor Jennifer Bute, and Susan Suchan.

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  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 on27Mar2022. Ice cream cone picture by StockSnap at PixaBay >> https://pixabay.com/photos/ice-cream-dessert-sweet-food-2588541/.  Coffee cup painting “Runneth Over” Psa 23:5 is by my daughter C.M. Blessing  ((Thank you again, Sweetheart)) .
i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: ageusia, alzheimers, comfort, dementia, dysgeusia, food, person with dementia, PLwD, symptoms, taste.  S&S categ: food.

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Appearance of “Lying”

This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words.
Tru here, in answer to a question about why persons with dementia “Lie” so much.
Not really any suggestions, but i can give some insight into WHY it appears that it happens (so that you can better create strategies that can help in your specific situation).

Arthur 20211113

Due to hallucinations, fantasy (like “Arthur; the sea dragon in space” digital painting above) can become our reality,
… but so can Horror (Almost all of my hallucinations are horror). 


In some of my nocturnal hallucinations, family members and FaceBook friends do and say things that are selfish and cruel.
i make every effort to separate (this NON-reality that feels more real-than-real) from my day-to-day attitudes and behaviors
— because the rational side of my brain TEMPORARILY knows those things were hallucination,
but it is difficult not to APPLY them as consensus reality,
because hallucination memories and consensus reality  memories can easily become merged.
((In fact, since nocturnal hallucinations are SO very vivid, they are often more memorable than consensus reality)).

Also, most people have things that they do not wish to remember, but with those of us who have memory loss that often becomes fact.
And our memory of actual (non-hallucinatory) events can be distorted.

With my grandmother her last couple years were very influenced by events that her childhood emotions had not fully dealt with.
i suspect that experience might be a frequent occurrence with others in late stages.

***

Five minutes after my mother calls on the phone, husband will ask “how is your mom?”.
At my CURRENT normal i can answer “i dont remember, but i am sure she is doing well”.
… HOWEVER, i have seen this journey from two grandmothers, and i know that eventually i will not realize that i do not remember, and will simply answer that “she is doing well”.

When great-grandma lived with us there was no such thing as an early diagnosis,
her perceptions and memories were inaccurate,
and it was all-too-easy to feel she was “lying”.
i so much wish that i knew then what i know now
(as a person seeing others and experiencing early stages of dementia myself).

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Another aspect to consider is that some of us have sensory hallucinations.  My hallucinations are primarily of sound and smell, but occasionally visual.  There are times that i am SURE a radio is on somewhere, interfering with my concentration.  But husband insists there is no radio.  My nocturnal hallucinations often set the tone for my day, and sometimes those (hallucination) events are considered factual in my day-to-day experience.
((See Impact of Nocturnal Hallucinations by Truthful Kindness at https://truthfulkindness.com/2016/01/19/impact-terrors-dreams/ )).  If asked about those events i am NOT lying; instead i am giving my version of the TRUTH !

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i think when a Person Living with Dementia says something that is untrue in all others’ perceptions,
i believe it is sometimes a lie,
BUT it totally depends on whether that particular person used untruth as a coping mechanism BEFORE dementia.
If they were basically a truthful person before dementia,
then those untruths are most probably NOT lies;
they are REALITY for those of us who are living with dementia symptoms.
Big difference, and prior personality is what tells the difference.
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Barbara Parker Brown (on Mon 06Dec2021) “Can it really be lying if we think it is the truth?” … (on Mon 06Dec2021) “yes, you may use it.” (in blog entry)

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— *** —

LINKS; Remember, Links are in colored text, NOT the pictures.

 

… and you might want to check out the “Hallucination” Links gathered for Dementia Symptoms and Strategies (alphabetized) at https://truthfulkindness.com/about/d-info/links-sx-strategies/.

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  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 on20Mar2022. (Began this article 03Dec2021 and invested >9 hrs on text … before posting it on 20Mar2022).  Digital painting “Arthur the Sea Dragon in Space” using “Fluid” first, then ProCreate default brushes, copyright Truthful Kindness on 13Nov2021.
i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: alzheimers, communication, dementia, person with dementia, PLwD, reality, relationship, symptoms, truth.  S&S categ: commun.

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“Living Well” with Dementia

This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words.  This entry is on Vocabulary: several friends Lament that they are no longer “Living well” with their dementia.  

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I think each person is different. We each define “Living Well” for ourselves.  Each one of us living with “the” condition (whatever that dys-abling condition is) should be able to define the term for themselves.

Discussing semantics can be so very complicated because meanings of words have so many differences due to culture, location, etc. Especially, i think our perception can be colored by who we spend time with; if those persons are Persons Living with Dementia – but in EARLIER stages, then i think our self-image is more colored by our decline.

Because i am having such difficulty finding any strategies that still work for myself,
when a friend despairs “I am no longer living ‘well’ with my dementia”,
i understand exactly what they are feeling.

They feel like failures even in the environment of their dementia friends.
They may have more than mild word-finding problems; they might have difficulty finding even one of the words to START expressing their feelings (like me).  They may have not understand much of what is said by their friends with dementia (like me).  Their ability with iADLs may have mostly disappeared, and ADLs (Activities of Daily Living) may be strongly changing.  They might be beginning dressing problems and toilet issues (like me) — or even more visible problems.  They may have a problem controlling saliva on their face, or have incontinence issues that are embarrassing, etc.   In my eyes, they have very high value regardless of whether they can still manage any of our standard “strategies”; regardless of remaining abilities. It is sad when even dealing with our symptoms becomes a value judgement of how we use strategies and what our current body-control is like. 

—  ***  —

Being asked this question was disconcerting for me;

“”Is that person actually living WELL with dementia??””

One of the first times I heard the phrase “Living Well with Dementia” it was a judgement of whether someone ELSE was “Living Well”.
The speaker was not dealing with dementia symptoms themselves and it was a form of judgement; a decision-making tool for whether they wanted to share the project from a Person Living with Dementia.
That is one of my misgivings about the phrase “Living WELL with dementia”.

—  ***  —

My friend, in my own perception
YOU continue to live “well” with dementia
because you are thankful for the moments;
you have not “given up” on being YOU (in whatever methods you still have the ability to live out those values) and living life.
In my perception you ARE Living Well with Dementia
… just with another – much more restricted “New Normal”.

— *** —

LINKS; Remember, Links are in colored text, NOT the pictures.

Some known Dementia stages and scales are at >> https://truthfulkindness.com/2021/06/02/dementia-stages-and-inconsistencies/ ;

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… and you might want to check out the Links gathered for Dementia Symptoms and Strategies (alphabetized) at https://truthfulkindness.com/about/d-info/links-sx-strategies/.

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  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 on13Mar2022. (Began this article 28Jun2019, investing 12hrs before posting it on 13Mar2022).  Digital painting using ProCreate and Acrylic Pour brushes from Alaina Jensen, copyright Truthful Kindness on 10Mar2022.
i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: alzheimers, dementia, living well, person with dementia, PLwD, strategy, symptoms, terms.  S&S categ: terms.

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Care-Partnering is a Three-Legged Stool

This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words. 

threeLeggedStool 20220301a//embedr.flickr.com/assets/client-code.js

PROBABLY, one person will not be able to meet all the future needs of Person Living with Dementia (aka “PLwD”), just as a two-legged stool cannot hold you up very well unless you have something to balance against.

One leg of the stool needs to be the input from Person Living with Dementia; please allow us to have input on our own care.  After all it is our body, our personality, and our personhood at stake.

Second leg is primary care-partner (aka “caregiver”, but i do not like that name very much).  Gradually becomes crucial in every element of care.

… but THIRD leg of the stool is an alternate care-partner, available to supply respite-care during self-care for primary care-partner (ie doctor appointments, a soak in the tub, a walk outside alone or with friends, bible study or meditation, urgent medical needs, etc).  i have seen this as crucial in care of others, and would really like to see it established for myself (as person needing care).

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If at all possible, it is important to establish this third means of care support in the earlier stages of dementia progression, because can be more difficult in mid-to-late stages.  Change is difficult for EVERYONE — but especially difficult for Persons Living with Dementia (aka PLwD), thus it can become traumatic for both Person Living with Dementia and primary care-partner .  We are reliant on patterns and routine to make our adaptive strategies work, and having a different person with us is a dramatic change; different ATTITUDES, different voice, different way of touching us, etc.  So might require many visits from third care-partner to even begin the adaptive process.

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Another point is that i would REALLY like the alternative care-partner for ME to read my blog entries in “crucial” folder (at >> https://truthfulkindness.com/category/important/crucial/ ) and my “Favorites” at https://truthfulkindness.com/about/about-me/favorites/  .

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LINKS; Remember, Links are in colored text, NOT the pictures.

Suggestions for “In-Home Care” by Truthful Kindness at >> https://truthfulkindness.com/2021/06/27/in-hm-care/ ;

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… and you might want to check out the Links gathered for Dementia Symptoms and Strategies (alphabetized) at https://truthfulkindness.com/about/d-info/links-sx-strategies/.

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  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 6Mar2022.  Digital Painting copyright Truthful Kindness on 01Mar2022.  This was probably the quickest art project i have done in a very long time — only 4hrs. Digital art using “silk” application then default ProCreate brushes, copyright Truthful Kindness on 01Mar2022
i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: alzheimers, care, caregiver, dementia, person with dementia, PLwD, strategy, symptoms.  S&S categ: caregiver .

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February Pages

This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com ,
so PLEASE address any questions or comments to that website, regardless of which website shows these words. 
In addition to any blog “entries” during February, Word Press has blog “pages” (which go into different categories at the top of the window).  This particular entry is Links for pages posted and Art Projects during February.

!!  Remember, Links are in underlined colored text, not the pictures  !!

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 in colored text, NOT the pictures.

. (no pages from dementia friends during February, but book reviews contain books from friends).

Misc Pages:

Book Reviews on Dementia Issues at >> https://truthfulkindness.com/about/about-me/favorites/book-dementia-issues/

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Revised “Come Near” (in Spiritual Journal) at >> https://truthfulkindness.com/about/life-other/spiritual/non-dimenticar-near/ ;

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Arts & Crafts Projects:

yearning Driven2Connect 20220216
//embedr.flickr.com/assets/client-code.js  

Used in page of Spiritual Journal.

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Anticipation: 

 i have been working on series re-visiting communication issues, and it is possible the first category will be finished in March.  Also working on

“More Toilet Issues” and “Care-Partnering is a three-legged stool”.

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Blog ENTRIES this month were: 

This month’s blog entries were on

Anhedonia (lack-of-Pleasure) at >> https://truthfulkindness.com/2022/02/07/anhedonia-dementia/ ,

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Praise of Care-Partner at >> https://truthfulkindness.com/2022/02/14/praise-care-partner/ ,

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Clothing Strategies at >> https://truthfulkindness.com/2022/02/20/clothing-strategies/  and

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Swiss Cheese Analogy at >> https://truthfulkindness.com/2022/02/27/swiss-cheese-analogy/

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  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 28Feb2022.  Digital painting copyright Truthful Kindness on 27Feb2022 (finished drawing for the heart on 17Feb2022 and no idea how many hours invested, but i am still not satisfied with it).  Procreate project on iPad using Apple Pencil and alcohol ink brushes by Alaina Jensen, then put it thru iColorama “raise” process to better show the brushstrokes.
i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
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Revisiting Swiss Cheese Analogy

This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words. 
This particular entry is revisiting “Swiss Cheese” analogy at request.  ((Originally part of an entry published 06Apr2015, but requested as separate entry by one of my dementia friends.)) 
So many people (both living with dementia and care-partners or family) focus on abilities lost  – but that is focus on the HOLES in the cheese.

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… what particular swiss cheese of dementia symptoms does your “loved one” have ??

… what areas of life (memories, abilities, etc) have holes instead of cheese and skills,

… and how to make the most of the abilities that are part of the CURRENT normal.

… in hopes that you, as Coach, Professional, or Loved One,

can apply that lived information in your relationships and tasks.

 

SWISS-CHEESE symptoms: 
i cannot tell you which abilities remain, for your loved one, because
… each of us had different abilities before dementia,
… each of us is losing abilities in a different time scale, and
… each of us has specific areas of brain that are localized “targets” for our own dementia. 
… But i can illustrate the concept by talking about myself;

My most intact skills are in Research, Relationships, and wRiting. 
In contrast, the biggest holes (where symptoms have removed my abilities) are in Reading, ‘Rithmetic, and Remembering.

… My reading comprehension has now dropped from University-level to my reading abilities when i was 4th or 5th grade.  (but with the addition of SIMULTANEOUS audio version, then i can sometimes read books that i enjoyed in 6th grade).
… My last job was in Accounting, but now I couldn’t tell you whether 123 was larger than 132.
… And my husband says I often repeat the same question.
I also have a hard time recognizing the way he looks, but I recognize his voice immediately.
I have smell hallucinations, usually of something burning, (which I discovered is a very common hallucination smell with my PWD friends)
and once in a while I have visual hallucinations –usually bugs. (How fun, huh?)
These are disabilities, However;
… the issue is to focus on the remaining abilities. 

My ability to communicate with written text is difficult and requires adaptation of lots of line breaks, much use of the capitol “L” (because lower case L looks like a capitol “i” and numeral “1”), and other strategies … but written is still much better than spoken and heard communication, where i am having constant misunderstandings.  Each person is different with whether visual or audio communication is better, and that will probably change as symptoms change.  So at this time i prefer FOCUS on written communication.

Memories are kept in different places of the brain … which is still most intact for your loved one ?? (This will be answered by neuroPsych testing, which is usually part of diagnosis process, and periodically afterward.)

Is music helpful for your loved one — at this stage ??  For me, mostly music is not helpful, as the audio section of my brain is severely messed up.

My tremors have become a horrid part of my symptoms, which is not uncommon for vascular as well as Lewy-Body types of dementia.  So strategies that need fine motor skills are no longer helpful for me personally — but my analysis skills are more intact, so how can those be used?

— you get the point: FOCUS on the remaining cheese, instead of the “holes” which have our DYS-abilities.  (But in order to retain that focus, we need to have already strategized for ways to handle the dys-abling parts of living life.)

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LINKS:

Above was part of my speech at 2015 annual ADI world conference >> https://truthfulkindness.com/2015/04/06/value-for-lived-experience-of-pwd-as-contributor-to-dementia-friendly-community/ .

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… and you might want to check out the Links gathered for Dementia Symptoms and Strategies (alphabetized) at https://truthfulkindness.com/about/d-info/links-sx-strategies/.

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  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 27Feb2022.  Pic of swiss cheese was created by me as a slide during my speech at 2015 annual ADI conference..  ((Thanks for the request, SusanMM.))
i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: ability, alzheimers, dementia, disability, focus, mood, person with dementia, PLwD, strategy, symptoms.  S&S categ: mood .

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Revisit Clothing Strategies

This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com ,
so PLEASE address any questions or comments to that website, regardless of which website shows these words.  ((Digital painting below, “Bird with Bib” copyright 19Feb2022 by Truthful Kindness.  Procreate project on iPad using Apple Pencil and alcohol ink brushes by Alaina Jensen, then put it thru iColorama “raise” process to better show the brushstrokes.))

Three years ago (2019) THESE were my strategies before symptoms progressed to current status, … then i will address changes afterward.  

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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.  By consolidating my clothing choices, i have substantially reduced time and stress for daily dressing.

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.  ((i made more than half-dozen bib-collars, and wrote about it at https://truthfulkindness.com/2021/01/03/bib/  )).

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2022 Opportunities 20211226//embedr.flickr.com/assets/client-code.js

Truthfully, words are not going together very well, so this entry may not be very well-connected, LOL. 
In Addition to above 2019 strategies, these are RECENT CHANGES 2022

Undies:

  • Front-Hook bra, but i have returned plenty of bras because sometimes the front hooks are far from easy to hook and unhook.  If i still need someone else’s assistance, then what is the use of having front hooks?  Easiest-connecting that i have found is more of a lounge bra – not ideal for figure enhancement, but i can usually get it on and off without help.  i lay it out on the bed, then back up to it, inserting arms in the arm holes, then pulling the center together in front.  (( https://smile.amazon.com/gp/product/B00H9MWZKA ))
  • Long Panty Liners (but peel-off backing must be off-set from edge of panty liner, because if there is no difference in size my fumble-fingers cannot separate backing from panty liner).  Reminder that these require easy-open secure trash container near the toilet.
  • Next step will be tube socks, because on bad days i have a hard time matching sock heel to placement over my own heel.

Outer clothing:

  • Until we get some sew-on magnetic snaps or magnetic button alternatives (in order to make my own “Adaptive Clothing”) i need assistance to put on “public” clothes.   So unless i am going to be outside or in front of public, during the day i almost always wear a Front-Zip Lounge Gown now.  ((https://smile.amazon.com/gp/product/B08526NHBG/))

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More insights: 12Jan2018 note from my retired-doctor friend Jennifer Bute:

There is always a reason! If only we could remember it!
The reason I was wearing my clothes inside out last week was because I had received a new dress in the post and had decided to try it on.
Taking off the present one had turned it inside out, as well as the cardigan being inside out and I had not realised when I put them on again.
Several years ago my daughter had bought me a dress that can be worn either way as a genuine reversible dress. Perhaps I need to invest in a few more!”

— Jennifer Bute on 12Jan2018

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LINKS:

2019 Past Clothing Adaptations (copy/pasted above) at >> https://truthfulkindness.com/2019/01/07/adaptations-dressing/ ;

Bib-Collar as Strategy at https://truthfulkindness.com/2021/01/03/bib/ ;

“Dementia Underwear” at >> https://truthfulkindness.com/2017/10/23/dementia-underwear/

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… and you might want to check out the Links gathered for Dementia Symptoms and Strategies (alphabetized) at https://truthfulkindness.com/about/d-info/links-sx-strategies/.

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  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 20Feb2022.  Photo of Hero with my clothes prepared for morning in 2019.  Digital painting “Bird with Bib” copyright 19Feb2022 by Truthful Kindness.  15hrs invested in Procreate project on iPad using Apple Pencil and alcohol ink brushes by Alaina Jensen, then put it thru iColorama “raise” process to better show the brushstrokes..
i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: adaptive, alzheimers, clothes, clothing, dementia, person with dementia, PLwD, strategy, symptoms.  S&S categ: clothing .

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Revisit Praise of Care-Partner

..This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com ,
so PLEASE address any questions or comments to that website, regardless of which website shows these words.  Most of this entry was originally posted in 2019, with changes to make it more current.

My husband / care-partner deserves great  thanks.

He is now fully retired from work outside of taking care of me and our home (which is MORE than a full-time job).

Husband does all the cooking, cleaning, finances, shopping, etc. … plus functioning as my back-up brain, back-up care for my service dog, and total care for my chickens since i am no longer able to care for them. 

My protein blend is a big part of keeping my blood sugar consistent throughout the day.  He mixes dry ingredients in 2-gallon container, then every week he creates the concentrated liquid for my protein powder – chocolate-coffee drink.  Since my tremors have increased so dramatically, i am no longer able to dilute the drink, so he now keeps a small quart-size pitcher with my protein drink in the door of fridge, allowing me to pour it myself instead of calling for him.

My control-area of kitchen is small because my kitchen responsibilities are minimal;
i cook 1 Tbsp oats every day (in microwave),
and i re-heat drinks and foods that my husband has prepared for me.

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Cleaning is often a huge problem for me, because i do not remember where i have cleaned and what still needs done.  So i no longer attempt cleaning.  i try to keep  very strong self-discipline, but with dementia symptoms that is not always an asset.  Husband left for work one day with me washing the kitchen floor — when he returned i was still on hands and knees washing the kitchen floor – with painful body and tears of frustration because i knew that at least some areas of floor must be tremendously clean after all these hours, but could not remember where i washed and where i did not wash yet.  That was the last time i did any washing of floors. 
I wash my own dishes, but he says i get dirty water on the clean dishes.  (I dont — but that is what HE thinks, LOL.)  My tremors are intense, so I often break dishes when trying to put them away, leaving glass all over the floor and inside cabinets where i was trying to put away dishes.  etc.

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In earlier years i was the one responsible for finances, but since i no longer understand numerical concepts, he needed to take that over entirely. I began forgetting simple driving instructions (like how to make the car go backward), so husband drives me everywhere i need to go.  He does all the shopping, evaluation of needed supplies, etc.

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it feels independent to still prepare my weekly pill-packs, but he runs oversight, making sure i remember to put clean towel under the processing area, wash my hands, etc.  If i am interrupted during task, he helps me figure out how to resume/finish the task.  And he tracks when prescriptions need re-filled.

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New changes in this past year are that husband now needs to help me take bath, remind me of aspects for daily hygiene, and help dress me if other than my daily zip-up “Lounge Gown”.  i rarely need make-up, but when make up is necessary then husband needs to do it, because my tremors make that a horrid mess. 

Swallow problems are now in control by putting less in my mouth at any one time, and by making sure i have no distractions; toileting must be BEFORE eating, and frequently throughout the day.  Swallowing requires full focus.  Walking requires full focus.  Conversation requires full focus, etc.

Husband is also needing to step in much more often during conversation or projects with others, because i forget names, and what i was saying.  He reviews every blog entry now; not to correct grammar or syntax, but to verify that what i have written is actually the concept i was trying to portray.

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Our conversation is full of misunderstandings now, and i realize that my behavior has changed a lot (without much smell, taste, or other pleasure-sensors that can so enhance married life).  i am very appreciative for his consistent care, and efforts to retain communication.  My husband is a jewel among men.

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Husband enables me to invest most of my time and energy in dementia awareness and advocacy.  If HE was not available to compensate for my dys-Abilities, then i would have no time or energy for dementia issues or art.  … So i try to make sure he gets a bit of “time off” also.    It is a partnership dance.  Even during the times when our “dancing” is just me moving my feet while he holds me up — we are still moving together.  (This photo is obviously not me, but i have no pictures of us dancing.)

“Effective Listening for Partnership” at https://truthfulkindness.com/2019/06/10/effective-listening-partner/ ;

Original version of “Partner Praise” at https://truthfulkindness.com/2019/11/11/partner-praise/ ;

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… and you might want to check out the Links gathered for Dementia Symptoms and Strategies (alphabetized) at https://truthfulkindness.com/about/d-info/links-sx-strategies/.

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  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 14Feb2022.  Photo of me and Guy in Zoom 14Feb2022 (and also our photo on Skunk train in 2019).  
i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags:  .  S&S categ: partner, relat .

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