Recent Additions 2019Dec 1

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.

I have had a lot happening this year, so have not shared as much from others;
it all just takes ENERGY … but sometimes there are jewels too important to let slide.

A jewel recently added to my blogsite is from:

Jennifer Bute on difference between hallucination, Visual Misrepresentation and Visual Misinterpretations, at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/night-illusions/

Index for other contributions here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/

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… and Family History:

. Kilroy/McNeel/Beaton Line at https://truthfulkindness.com/about/life-other/family-history-index/r-u-beaton/

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Petrin Line at https://truthfulkindness.com/about/life-other/family-history-index/swedish-farm-name/

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Frey/Spencer/McMinn Line at https://truthfulkindness.com/about/life-other/family-history-index/sgt-a-patterson/

Index for other pages on FamHist here >> https://truthfulkindness.com/about/life-other/family-history-index/

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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 06Dec2019. Tags.

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Partner Praise

Some folks are astounded at how much i invest on Dementia Awareness.

The only way i can invest this huge amount of time and energy on dementia issues is with enablement from my husband/care-partner.

He is retired from full-time work, but has a part-time job, plus caring for me.

Husband does all the cooking, cleaning, finances, shopping, etc. … plus functioning as my back-up brain and back-up care for my animals (an important factor in their well-being since i often forget whether they have been fed/watered/put away).  Even tho i have notes on the doors to remind me, he often needs to remind me to wash my hands after handling the chickens.

Since my protein blend is such 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 – chocolate-coffee drink.
My control-area of kitchen is small because my kitchen responsibilities are minimal;
i dilute my protein drink to half strength (multiple times during the day),
i cook 1 Tbsp oats every day (in microwave),
and i re-heat foods that husband has cooked.

.

Cleaning is often a huge problem for me, because i do not remember where i have cleaned and what still needs done.  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 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.)  I often break dishes when trying to put them away, so then we have glass all over the floor.  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.

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i 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.

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his Part-time job (6hrs/week) is very flexible, allowing me to come to work with him on “bad” days, and allowing great time flexibility.  But the income is important for funds to travel for family needs, and when we have time for fun.
… also it usually allows him time away from me, doing his own thing.

.

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.  … 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/ ;

“Service User” at https://truthfulkindness.com/2014/07/24/service-user/ ;

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.*. . .*. . .*. SCHEDULE: .*. . .*. . .*.

along with daily Dementia Mentors’ video chats,
( https://www.dementiamentors.org/ )
i may (or may NOT) join the following:

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Nov 12, Tuesday: Next Dementia Chats with Lori LaBey will be November 12.
This monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience. Let me know if YOU would like to participate
>> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

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Nov 14, Thursday: DAA Discussion topic “Navigating thru Doctors”, hosted by JohnRichard (JR) Pagan. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time. 6pm London, 7pm South Africa. Link to join is in left column at this page
>> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

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Teepa Snow will hold her first conference November 17-19 >> https://teepasnow.com/pac-annual-conference/ .

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Nov 27/28 Wednesday: DAI November Webinar on “Beyond BPSD” with Al Power MD.
Date/Time and more information is available here
>> https://www.dementiaallianceinternational.org/events/dai-webinars/

 

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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 11Nov2019. Began this blog entry 09Mar2019 then added 6 more hours invested on Nov10.  Tags are: caregiver, dance, dementia, Living with Dementia, partnership, PLwD, relationship

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Learned from Power Outage

Tru here on Thursday.  Today was our 6th day with no electrical power — and with my progressing symptoms i have new complications.  So this is what i learned.

Portable battery pack for cell phone was crucial during this power outage, in order to provide good family communication for any surprise needs.  Mine is made by Anker >> https://smile.amazon.com/gp/product/B00X5RV14Y/

In our town of ~7,000 ppl we had only one restaurant that was operating during the power outage, and only one grocery store.  That grocery store supplied breakfast buffet each morning during the power outage.  Do your research, and find out what local suppliers (including fuel suppliers) have a generator.

Since our 1932 Wedgewood stove runs on propane, we didnt need to worry about cooking, and we now have a fine wood stove to keep the house warm.  But life is calmer with a hot or cold drink in your hand, so suggest a couple high-quality Thermos bottles.  Get filled from neighbor, restaurant, or grocery store that has alternative power.  For me, my symptoms are better with hot chocolate, (But i am sure that is completely power-of-suggestion, LOL.)  Power outage can also be an excellent excuse to introduce yourself to the neighbors.  Our thermos keeps hot things hot for 36 hours.

Remember to eat and drink.  Blood-sugar fluctuations will definitely increase dementia symptoms, so are to be avoided if at all possible.  i keep some gluten-free, low-sugar, high-protein energy bars on hand for between meals, along with packets of low-sugar hot chocolate, and instant oatmeal.  This week, during the day that husband was gone, i forgot and used my normal gluten-free extra-thick oats — it didn’t work.  Then i forgot to drain the water that did not absorb into the oats before i added the milk.  … Not wonderfully appetizing, but keeps blood sugar from crashing.

… and the main issue was LIGHT:
A) My evening symptoms are more difficult when everything is different.  Many of my coping strategies do not work with different circumstances.
B) Discovered a moving Light (such as FlashLight) is VERY disorienting for me; shadows are constantly changing and my balance goes out the window.
C) Unless generator is on, then camping Lanterns and candles need set out in different areas of our house, or i will fall. (remember to set candles in fire-proof dishes on a fire-proof support).
D) Then we get to deal with the shadows from the Lanterns and flickering flame.
E) Discovered new challenge; our particular camping Lantern now triggers almost continual sound hallucinations for me.  One minute hallucinations are rap music (which i dont like), then DJ-narration, then moaning like a ghost, … and on and on for hours.
F) NEED to set up music i enjoy in a mode that i can be listening anytime Lantern is running.  i know there is a way to do that on my cell phone, but need to consider loss of battery power on cell phone also.  Need to find portable CD player that can play my comfort music when there is no electrical power.

i repeat my closing statement from what i wrote four years ago: This is just a lesson in WHY people say “be careful” and “be safe” when unusual circumstances occur. It is not that our family was not well-prepared for storm and loss of electrical power; it is simply that habit and schedule are important safety elements in dementia patient’s ability to complete activities of daily living. In unusual circumstances habit and schedule are interrupted.  https://truthfulkindness.com/2015/02/09/danger-of-unusual-circumstance-storm/

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.*. . .*. . .*. SCHEDULE: .*. . .*. . .*.

along with daily Dementia Mentors’ video chats,
( https://www.dementiamentors.org/ )
i may (or may NOT) join the following:

.

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Nov 7, Thursday: DAA Discussion topic “Dementia and HUMOR”, hosted by Chuck McClatchey. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time. 6pm London, 7pm South Africa. Link to join is in left column at this page
>> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

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Nov 12, Tuesday: Next Dementia Chats with Lori LaBey will be November 12.
This monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience. Let me know if YOU would like to participate
>> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Nov 14, Thursday: DAA Discussion topic “Navigating thru Doctors”, hosted by JohnRichard (JR) Pagan. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time. 6pm London, 7pm South Africa. Link to join is in left column at this page
>> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

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Teepa Snow will hold her first conference November 17-19 >> https://teepasnow.com/pac-annual-conference/ .

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Nov 27/28 Wednesday: DAI November Webinar on “Beyond BPSD” with Al Power MD.
Date/Time and more information is available here
>> https://www.dementiaallianceinternational.org/events/dai-webinars/

 

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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 31Oct2019. Tags are: dementia, emergency, Lighting, Living with Dementia, PLwD, preparedness, strategy, symptom

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Verbal Comprehension Strategies Part 3

Tru here.

A fully-understood conversation means i grasp the important parts AND the other person is comfortable that they got their point across.
The outline below seems to help ME.

—  ***  —

Last year i posted >>  https://truthfulkindness.com/2018/12/31/floating-words/ .
My challenges with verbal comprehension have continued and intensified.

… So husband and i have some current coping strategies, but we are definitely hoping more strategies will show up soon.

1) As discussed in Part 1, conversation needs to be: a) slow, b) clearly enunciated, and c) within sight, while d) watching for body language.  Also e) eliminate as much distraction as possible .
These strategies are covered in more detail here >> https://truthfulkindness.com/2014/12/12/verbal-comprehension-strategies-1/ .

2) Longer PAUSE between sentences, and eliminating any un-necessary phrases, are two strategies becoming even more crucial.  Remember i am most likely to understand first bit of statement and last bit of statement, so including anything in the middle is counter-productive;
it clouds my understanding of what the subject is.

3) Try to make your first sentence a very short “subject” sentence.  This is similar to the “subject” heading in eMail format, and tells me where to find context for your words in my brain storage.  WAIT for any clarifying statements, until i have fully-registered your primary statement.  Otherwise i am still trying to register your statement, at the same time as i am trying to figure out how your words modifies that statement,
… so ALL of it is lost.

4) Sometimes a simple note or picture can make the topic much clearer.  Best-case scenario is BOTH note and short conversation.
Using more than one sensory system in conversation is almost always a helpful thing.
While telling me he was leaving, husband handed me this note: “Taco Bell for lunch with grandson … then taking grandson home.  i will return by 4:30”.  i had audio, visual, and textural input because i also had a note in my hand.  Plus … In a few minutes, when i have forgotten where he went, hopefully i will see the note.

5) Graphics almost always help.  We have discovered that Potential for future misunderstandings is almost always minimized by including pictures, maps, etc.  We were in the car and husband asked about upstairs wainscoting (lower-wall-coverings).  In less than a minute we decided the topic needed to wait until we were in the location, with paper and pencil.  Then we can both better understand each other, and there will be pieces contributed by both of us … and verified by looking at the paper.  When i feel that changes were made without my input … the paper shows my input.  We both initial the paper and file in construction folder.
Sometimes he will have me initial calendar items, which are then posted on fridge door.
It has taken a while to adjust to this process, but i think it is much better for our family dynamics
… at THIS particular stage of decline.
(In Later stages, i imagine this process could create more problems than it would solve.)

As Listed above,
Part 1 was initial suggestions
>> https://truthfulkindness.com/2014/12/12/verbal-comprehension-strategies-1/ ;
Part 2 was intensification of symptoms
>> https://truthfulkindness.com/2018/12/31/floating-words/
… and this is Part 3

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.*. . .*. . .*. SCHEDULE: .*. . .*. . .*.

THIS WEEK,
along with daily Dementia Mentors’ video chats,
( https://www.dementiamentors.org/ )
i may (or may NOT) join the following:

.

 

Oct 22, Tuesday: Next Dementia Chats with Lori LaBey will be October 22.
This monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience. Let me know if YOU would like to participate
>> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 23 Wednesday: DAI October Webinar on “Assistance Dogs for Dementia”.
Date/Time and more information is available here
>> https://www.dementiaallianceinternational.org/october-webinar-assistance-dogs-for-dementia/ .

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Oct 24, Thursday: DAA Discussion topic “Finding Purpose”, hosted by JohnRichard (JR) Pagan. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time. 6pm London, 7pm South Africa. Link to join is in left column at this page
>> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

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Teepa Snow will hold her first conference November 17-19
>> https://teepasnow.com/pac-annual-conference/ .
.

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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 21Oct2019. Tags are: communication, conversation, dementia, Living with Dementia, PLwD, relationship, strategy, verbal comprehension ..

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Autumn with Dementia Mentors

Tru here.

—  ***  —

i feel priveleged to be part of the Dementia Mentors’ projects, and helping as Assistant Administrator.

  https://www.dementiamentors.org/

—  ***  —

Lots going on in our Dementia Mentors projects Lately;
We have a new group gathering during the week,
new personalized Mentor teams in the works,
new videos from several members,

… and also considering ideas for a Dementia Mentors’ COOKING booklet.

—  ***  —

NEW MEETING for Memory Café:

We have had several members ask for an additional Memory Café meeting.
Having an addition Café meeting time allows us to keep our groups personal and cozy.
We now have at least 7 gatherings for Persons with Dementia every week,
and an average of 33 meetings per month.

Wonderful to visit with my friends — in our Living Rooms, or kitchen,
… or with Laptop in back yard, LOL.

Please join us if you have the chance.
If you send me a message i can add you to the FaceBook notification list;
this way you will not miss a single smile, laugh, or tear.

—  ***  —

NEW MENTOR TEAMS:

We try to avoid having a Memory Café group chat turn into individual mentoring.
(One-on-one mentoring is the option for a member to speak longer time periods,
without needing to worry about sharing the time with everyone else,
because it is usually only 2 people.)

In general,
individual mentoring is also the appropriate option for more intensely personal topics
like some of the sex or hygiene questions.
Sometimes these questions can still be appropriate in a very-small group,
but few of our groups are small now.
We range from 5 members … to over a dozen members in group chat at any one time.

Individual Mentoring is an ideal opportunity to begin processing the grief and super-high emotions
that almost always accompany a dementia diagnosis.
Grief is a process,
and so is the learning curve for finding strategies to live happily in everyday life AFTER diagnosis
… and adjusting to the continually-changing “new-normal” of our life NOW.

—  ***  —

Dementia Mentors’ VIDEOS:

Elmarie Janse van Rensburg of South Africa gives us helpful tips on staying alone for short periods of time when living with dementia, at https://vimeo.com/showcase/3464118/video/362831539 .

Tim Perkins talks about dealing with apathy after diagnosis with dementia, at https://vimeo.com/showcase/3464118/video/363359890 .

Anne Miller talks about how certain things she has found help her … and playing music is one.  https://vimeo.com/showcase/3464118/video/364850226 .

Our Video Archive is here https://vimeo.com/showcase/3464118 .

—  ***  —

COOKING Booklet:

We are thinking of basic COOKING suggestions (hope to include some from the wonderful Barry Pankhurst), plus specific recipes used by our members.  So far we have volunteers for: Egg tortilla, 3-ingredient Muffins, Special Spicy Sauce, Snickerdoodles, Cobbler, BourbonBalls, and Home-Made Eggnog.   Heads-up to look for this … hoping by the end of 2019, but no promises.

—  ***  —

i feel priveleged to be part of the Dementia Mentors’ projects, and helping as Assistant Administrator.

  https://www.dementiamentors.org/

—  ***  —

. .

.*. . .*. . .*. SCHEDULE: .*. . .*. . .*.

THIS WEEK,
along with daily Dementia Mentors’ video chats,
( https://www.dementiamentors.org/ )
i may (or may NOT) join the following:

.

Thursday Oct 17 will be another DAA Discussion. Topic will be “Financial Impact of Dementia”, hosted by Laurie Scherrer. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time. 6pm London, 7pm South Africa. Link to join is in left column at this page >> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

… and LATER in October
you might want to clear your calendar for :

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Oct 22, Tuesday: Next Dementia Chats with Lori LaBey will be October 22.
This monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience. Let me know if YOU would like to participate >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 23 Wednesday: DAI October Webinar on “Assistance Dogs for Dementia”.
Date/Time and more information is available here >> https://www.dementiaallianceinternational.org/october-webinar-assistance-dogs-for-dementia/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 24, Thursday: DAA Discussion topic “Finding Purpose”, with John-Richard (JR) as Host..

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Teepa Snow will hold her first conference November 17-19
>> https://teepasnow.com/pac-annual-conference/ .
.

.*. . .*. . .*. . .*. . .*. . .*. . .*.
.*. . .*. . .*. . .*. . .*. . .*. . .*.


* 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 14Oct2019. Tags are: advocacy, blog, dementia, Dementia Mentors, Living with Dementia, PLwD, relationship .

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The Latest Cure

???

???.???

Tru here.
How can any credible claim be made from a very tiny study (8 people with Alzheimers) ???

Today it is electromagnetic therapy for Alzheimers.
Last week it was a diet for all kinds of dementia.
The month before, there was another behavior-cure-all for dementia.

All of these build not only dissatisfaction with our current “new normal”,
but misunderstandings among family and friends.
Friends think — and sometimes actually SAY,
“There is a cure,
so obviously you CHOOSE to continue dementia symptoms.”
ugggh !!!

.*. . .*. . .*.

Some of my friends are getting excited about
a head cap that emits electromagnetic waves in specific frequencies.

For six months
i tried a head cap that emits electromagnetic waves in specific frequencies
… seven years ago.

My treatment had absolutely no results
except output of time and money
… because of course none of it is covered by insurance.

But little is truly known
on what causes the VARIOUS types of the Alzheimers-type of dementia,
which itself is one of more than 100 known types of dementia.
Along with the fact that (if i recall)
more than half the autopsied “Alzheimers” brains
actually had more than one type of dementia.
(but cannot find the study i am thinking of — in past 5yrs).

So,
realistic possibility of improvement or “cure” of the disease itself
is probably in the distant future.

Unfortunately, when we get excited and invest family time and funds,
then we get depressed when nothing happens.
It is an “equal and opposite reaction”.
Not only is depression a concern,
but If we pursue This solution and That solution
… then we are left with no more money.
.
No more money for the family to get care-partner assistance
… or relief for their own needs.
Have seen this with some of my friends with other diseases.
Bankrupt families
living on the street because they spent all their funds on the “possibilities”.

If you allow yourself to get your emotions wound up in hope for improvement or a cure,
it can become a never-ending sewer of failure.

I think the medical community is still too far away from the necessary knowledge,
for improvement or cure to be our hope.

For those of us currently experiencing dementia symptoms,
This generation must HOPE in our QUALITY of life and learning coping STRATEGIES,
… and hope in FELLOWSHIP and UNDERSTANDING during the journey.

… at least that is my own personal opinion.
But I have lost acquaintances from discussion of this topic
(not the same acquaintances that are now street-people due to the cost, of course).

For ME, electromagnetic pulse therapy was not helpful,
but there could have been many mitigating factors;

  1. a) some -including neurologist- have theorized a slowly-progressing-type of Alzheimers for my cognitive decline, but my most prominent symptoms are definitely vascular and Lewy Body types of symptoms.  Electromagnetic pulse therapy may be completely non-effective for those types of dementia.
  2. b) when i tried electromagnetic pulse about 7 years ago, i think the specific beneficial settings were just “guess and go”.  Settings are probably much more precise 7 years later.
  3. c) the setting strength needed is probably much more precise 7 years later.

.
All the little bits of knowledge contribute … over time.
WONDERFUL that folks are willing to invest time in small research studies
(this particular study had 8 persons with Alzheimers participating)
and it looks like 7 of the 8 people with dementia feel they are benefitting from the treatment.

These small research studies of various aspects contribute greatly to the knowledge base
that will eventually discover what causes the various types of Alzheimers,
and lead to the needed “cure”.

… Small research studies just need time to “percolate”,
and find some of the successful strategies,
then turn into larger research studies,
which in turn ALSO need time to “percolate”
and develop into constructive bits of certain knowledge
… which can contribute in a larger way toward finding the “cure”.

.

In the meantime, i just wish journalists would be more careful in their headlines.

“Alzheimer’s memory loss reversed by new head device using electromagnetic waves”
is inappropriate heading;
it leads to inaccurate conclusions
… and FALSE hope that a “cure” has been found NOW.
>> https://medicalxpress.com/news/2019-09-alzheimer-memory-loss-reversed-device.html .

“Magnetic pulse to head could improve memory of dementia sufferers”
is a bit more accurate than first heading i read,
but would be much better with added phrase
“Magnetic pulse to head could LEAD to new discoveries for Persons with Dementia“.
>> https://www.telegraph.co.uk/news/science/science-news/11061614/Magnetic-pulse-to-head-could-improve-memory-of-dementia-sufferers.html .

“Head device reduces memory loss in 7 out of 8 people”
would have been much better as
“Head device reduces memory loss in 7 out of the 8 people in study trial
>> https://www.medicalnewstoday.com/articles/326401.php?fbclid=IwAR2VBaDTVKoQrSB9M8SIXzLXj_cQYkaDJvz0B1p-NyMvQstm-nixISoIq9s

.

Today it is electromagnetic therapy for Alzheimers.
Last week it was a diet for all kinds of dementia.
The month before, there was another behavior-cure-all for dementia.

All of these build not only dissatisfaction with our current “new normal”,
but misunderstandings among family and friends.
Friends think — and sometimes actually SAY,
“There is a cure,
so obviously you CHOOSE to continue dementia symptoms.”
ugggh !!!

.*. . .*. . .*.

.
Let us keep reality in sight when forming journalism titles, okay ?
Personally, i think that “Cure”-mongering can be just as destructive as fear-mongering.
Both distort reality in unhealthy ways.
.
Notes:
A]] a “Monger” is a seller; a dealer in a specific commodity.
These are selling a “cure” … or just more subscriptions.
B]] “(if i recall) more than half the autopsied “Alzheimers” brains
actually had more than one type of dementia.”
… if YOU know where to find Link for this study, please send me the Link.
Thank you.
. .

.*. . .*. . .*.  SCHEDULE:  .*. . .*. . .*.

THIS WEEK,
along with daily Dementia Mentors’ video chats,
(see https://www.dementiamentors.org/ )
i may (or may NOT) join the following:

.

Oct 10, Thursday, will be Teepa Snow’s next video Zoom, “Lets Talk”, open to all persons with dementia, will be held Thursday OCT 10. Time is (one hour duration) beginning 9:30am Pacific Time, 10:30 Mtn, 11:30 Central, 12:30 Eastern time.  5:30pm London, and 7:30 Germany and South Africa.  Requires prior registration: “Free webinar session for anyone living with dementia who would like to share ideas, concerns, experiences, partner issues or successes. The topics will be determined by the group.”
Registration process has now been simplified.
Let me know, and will put you in contact with Teepa Snow’s helper for this process.
>> https://teepasnow.com/services/online-learning/live-public-webinars/webinars-for-plwd/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Thurs DAA Discussion will conflict with Teepa Snow Zoom this month.

Thursday Oct 10 will be another DAA Discussion. Topic will be “Driving Alternatives”, hosted by Chuck McClatchey. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time. 6pm London, 7pm South Africa. Link to join is in left column at this page >> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

… and LATER in October
you might want to clear your calendar for :

.*. . .*. . .*. . .*. . .*. . .*. . .*.

 

Oct 22, Tuesday: Next Dementia Chats with Lori LaBey will be October 22.
This monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience. Let me know if YOU would like to participate >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 23 Wednesday: DAI October Webinar on “Assistance Dogs for Dementia”. 
Date/Time and more information is available here >> https://www.dementiaallianceinternational.org/october-webinar-assistance-dogs-for-dementia/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Teepa Snow will hold her first conference November 17-19
>> https://teepasnow.com/pac-annual-conference/ .
.

.*. . .*. . .*. . .*. . .*. . .*. . .*.
.*. . .*. . .*. . .*. . .*. . .*. . .*.


* 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 07Oct2019, with almost 12hrs invested. Tags are: blog, communication, cure, dementia, Living with Dementia, PLwD, relationship .

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Alone for a Week

Husband was gone last week, so i was on my own.

Had a few mishaps … but nothing which could not be repaired.

Plenty of my chocolate / cold-brew-coffee / protein mixture was on hand, (just not quite enough Cashew Milk to go with it, LOL).

Unfortunately the gluten-free raisin bread i like is no longer available, but i had boiled eggs to go with my 3pm salads, and freezer food was available.  There were bags of pre-cooked crumbled hamburger (with bits of onion), pre-cooked corned beef, and pre-cooked chicken chunks, along with pre-cooked chicken sausages.  Vacuum-packed packets of pre-cooked brown rice were on hand, along with jars of cheese sauces and tomato sauces.

The microwave and i had a week of it.  i even had a bag of Milton’s gluten-free baked crackers to splurge on.

i was left with two phone numbers for local people who could pick up something at the store, and who i could check-in with before going outside for chores etc.  i just needed to remember and check in with them again on my return from chores.  On most days of his trip, i also stayed in pretty close contact with my husband, using text-tool on cell-phone.  (Also have “Find iPhone” app connecting both our phones)

Dog brings his water bowl whenever it gets empty, but pre-bagged dog food in dated, clear plastic baggies enabled me to look at the stack of empty baggies and easily see whether the dog had been fed.

With messages from my sister, and my Dementia Mentors’ pals to keep me company on video conversations, all-in-all, i thought the week went well, but it is awfully nice to have my partner back home.

.

As ElMarie’s suggests in the following video, is also good idea to make sure extra mobility tools are on hand.  i ALWAYS keep them close.  >> https://vimeo.com/showcase/3464118/video/362831539

.

. .

SCHEDULE:

THIS WEEK, along with daily Dementia Mentors’ video chats, (see https://www.dementiamentors.org/ )
i may (or may NOT) join the following:

.
Thurs DAA Discussions
.
Thursday Oct 3
will be another DAA Discussion.  Topic will be “Dementia State Plans”, with guest speaker Brenda Roberts, hosted by Paulan Gordon. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time.  6pm London, 7pm South Africa.  Link to join is in left column at this page >> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 10, Next Thursday, will be Teepa Snow’s next video Zoom, “Lets Talk”, open to all persons with dementia, will be held Thursday OCT 10. Requires prior registration: “Free webinar session for anyone living with dementia who would like to share ideas, concerns, experiences, partner issues or successes. The topics will be determined by the group.” Can be kind-of frustrating working with the registration process, but if you get stuck there is a phone number of someone to help. That is what i needed to do, and so glad Teepa Snow provides a helper for this process. >> https://teepasnow.com/services/online-learning/live-public-webinars/webinars-for-plwd/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 22, Tuesday: Next Dementia Chats with Lori LaBey will be October 22. This monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience. Let me know if YOU would like to participate >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Teepa Snow will hold her first conference November 17-19 >> https://teepasnow.com/pac-annual-conference/ .

* 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 30Sep2019. Tags are: blog, dementia, Living with Dementia, meals, PLwD, .

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Check out 500

Tru here.
My focus needs to be elsewhere for July.
You will probably NOT see me on FaceBook, and probably no new blog entries during the month of July.
Other folks have filled in for Dementia Mentors’ responsibilities, and i am doing other things this month.

i have scheduled many personal tasks for remainder of this year;
hoping to consolidate my 20 years of Family History research by the beginning of 2020,
and considering my “Legacy” in some other areas of Life.

.

… but that does not mean there will nothing to read at this website  …

.

in five years of effort i now have over 500 blogs with first-person dementia perspective;
200 from myself and 300 from others.

Check them out:
My Top Dozen >>https://truthfulkindness.com/2019/03/18/dozen-2019/  ;
My Most Crucial >> https://truthfulkindness.com/category/important/crucial/ ;
Other Contributors >> https://truthfulkindness.com/index-persons-with-dementia-pwd/

. .

SCHEDULE:

Hope to have more family time during the next six weeks, so i may skip some blog weeks.
THIS WEEK, along with daily Dementia Mentors’ video chats,
(see https://www.dementiamentors.org/ )
i may (or may NOT) join the following:

.
Thurs DAA Discussions
.
DAA Discussion cancelled for 4th of July.   Go here to get the Link for this week >> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

.*.  .  .*.  .  .*.  .  .*.  .  .*.  .  .*.  .  .*.

Next Dementia Chats with Lori LaBey will be July 9. This is twice-monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience.  2nd and 4th Tuesday each month.  Let me know if YOU would like to participate >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

Teepa Snow’s next video Zoom, “Lets Talk”, open to all persons with dementia, will be held Tuesday JULY 23. Requires prior registration: “Free webinar session for anyone living with dementia who would like to share ideas, concerns, experiences, partner issues or successes. The topics will be determined by the group.” Can be kind-of frustrating working with the registration process, but if you get stuck there is a phone number of someone to help. That is what i needed to do, and so glad Teepa Snow provides a helper for this process. >> https://teepasnow.com/services/online-learning/live-public-webinars/webinars-for-plwd/ .

i hope to attend Teepa Snow’s conference November 17-19 >> https://teepasnow.com/pac-annual-conference/ .

* 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 01Jul2019. Tags are: blog, dementia, Living with Dementia, PLwD, .

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Chapter Published

Tru here.
Have now received my copy of our book “Dementia-Friendly Worship:
A MultiFaith Handbook for Chaplains, Clergy, and Faith Communities”.
This book is designed to give practical help to faith leaders,
in developing services and creating dementia-friendly faith communities.

i am one of 45 authors included in this book.
My chapter, “Anchor Me”, is included in Section 2:
“Voices of Persons Living with Dementia”.
This section includes authors
Rev. Dr Cynthia Huling Hummel,
Greg O’Brien,
Daisy Duarte,
Jim Gulley,
and myself.

The book has a wonderful intro by Daniel C. Potts, MD .

Unfortunately my reading comprehension is not up to understanding much of the book,
(including my own chapter)
but i am pleased to be included in this project.

You might like to share this title with YOUR spiritual Leader;

> https://www.amazon.com/Dementia-Friendly-Worship-Multifaith-Chaplains-Communities/dp/1785926659/

 

Full disclosure: This is a project of Faith United Against Alzheimer’s.
As one of the authors, my only remuneration is a free copy of the book,
which i received earlier this month.

.

 

.

SCHEDULE:

Hope to have more family time during the next six weeks, so i may skip some blog weeks.
THIS WEEK along with daily Dementia Mentors’ video chats, i may (or may NOT) join

.

Dementia Mentors: https://www.dementiamentors.org/ .

.

Tue 25 June: Dementia Chats with Lori LaBey. This is twice-monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience.
Let me know if YOU would like to participate >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .
.
Thurs 27 June: DAA Discussions
.
JohnRichard (JR) Pagan will host Dementia Discussions tomorrow on topic
“Keeping the House Well Lit & Organized“, June 27.
Persons with Dementia and Care-Partners are welcome to participate
>> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

.

Also dont forget upcoming conferences below
(which i will NOT be attending as i have no funding):
Jun 24-26: LewyBody LBDA conference in LasVegas June 24-26 >
> http://www.clevelandclinicmeded.com/live/courses/lewy-body-dementia/ .

Teepa Snow’s next video Zoom, “Lets Talk”, open to all persons with dementia, will be held Tuesday July 23. Requires prior registration. Free webinar session for anyone living with dementia who would like to share ideas, concerns, experiences, partner issues or successes. The topics will be determined by the group. Can be kind-of frustrating working with the registration process, but if you get stuck there is a phone number of someone to help. That is what i needed to do, and so glad Teepa Snow provides a helper for this process. >> https://teepasnow.com/services/online-learning/live-public-webinars/webinars-for-plwd/ .

i hope to attend Teepa Snow’s conference November 17-19 >> https://teepasnow.com/pac-annual-conference/ .

* 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 24Jun2019. Tags are: book, dementia, Dementia-Friendly Worship, Living with Dementia, PLwD, publishing, .

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Computer Complications

Tru here.

Computer Administrative stuff is just getting much more complicated for me lately.
Complications with getting into Zoom video meetings,
Complications with compiling the info needed for my various tasks.

Sometimes i am asked what my days are like.
i have often given samples of complications in hygiene, sleeping, etc,
but today thought i would describe my daily “work”.

i am Administrative Assistant for Dementia Mentors, which has certain online and computer-based tasks.
My personal Advocacy project (along with blogging) is Dementia Symptom Perspectives;
i gather projects from Persons Living with Dementia
(often abbreviated PLwD, but in other contexts can also mean Persons Living with DysAbility).
i share those projects in various social media,
hoping they can increase understanding
and perhaps trigger strategy-search with care-partners and professionals.
i use the FaceBook page of Dementia Symptom Perspectives for FB sharing,
but also use it as my holding area until i get time to add each project to my spreadsheet of Links.
(A spreadsheet is like a computerized “Ledger” sheet or columnar pad.)
(See >> https://truthfulkindness.com/2016/03/01/pwd-matrix-topics-201510/ )

and today, i am trying to transfer from my “off-work” hobby of Family History.

i currently have way too many windows open, counting online Links, documents and spreadsheets. 
I kept opening Links, hoping for the key that would fit the puzzle to make them all work together.
All these windows hold pieces for current project,
but cannot pull all the concepts together in order to make sense of them,
so that i can save the information appropriately and close the windows.

And when i return to the desk after food, bathroom-break, chicken-care, (and especially sleeping, LOL),
my brain is like a clean slate, and i have extremely difficult time remembering even what the project is about,
and why i have all these windows open.

i try to use a document to track my actions, so that i can recover my thoughts,
but usually not very successful at chosing words that make much sense to me after a “project blink”.

i opened most of these Links 3 DAYS ago.
Took most of the next day trying to recover my thoughts and
was able to work constructively an hour or two of that day before bed.
The next day NOTHING was achieved
– unable to pull together any of the strings of thought that go with these many computer windows.
They have now been open 3 DAYS.
i have numerous Advocacy tasks that are important, so must get these windows off my desktop,
and i am despairing of ever pulling together these concepts
— but it is important !!!

i have not found this info collected anywhere,
and TOGETHER, i think it says …
i forget what i think it says, but something important about this ancestor or string of ancestors.

so today i will just copy all these Links into my General Family History document in a List, and give up for a week or so.

So on to the next task for the beginning week, and …

Cannot remember names of my friends (Persons Living with Dementia, or PLwD),
so that i can find their projects to share on Dementia Symptom Perspectives.

It might help to review my list with hundreds of FaceBook/Twitter friends living with dementia
(yes, i have a spreadsheet for that, LOL)
in order to find the specific name i am searching for.
But i realize it will take a lot of time searching for the bell of recognition.

However, today i cannot even remember how to find that PLwD matrix,
in order to begin the task of finding the Lady that sometimes writes on the intersection of dementia symptoms and faith.
If i could find my matrix then maybe i could search the term … what is that ??
i just had it …
Quaker !

Gave up and was telling Guy about the problem when her name occured to me; Shelagh.

But this matrix is crucial; it has a half-dozen “sheets” containing important information for Dementia Mentors,
(along with my Dementia Symptom Perspectives data
with thousands of PLwD project Links i have been collecting for the past 5yrs).
i have made the decision to work with half-dozen “sheets” for different topics — on one file,
so that i have less files to keep track of,
but now cannot even find that one file.

I have Dewey Decimal, so is it in 363 for Social Problems/Dementia Organizations/DSP, or 616 for Medical Problems/Dementia/Ppl with Dementia, or maybe 800s with Authors ?  i need to just make a desktop Link for this matrix and couple other files i use over and over again during the week … but then i am afraid i will forget how to use Dewey Decimal System, so lose access to my years of work in other areas.

Finally found matrix, and found her name in my matrix.  Her blog is https://fizzyhammers.com/ .
Horay.
Now that the day has been spent trying to find stuff,
i have finished my first (5 minute ?!!) task,
— in about 6 hours.

Life is just so VERY much more complicated and time-consuming with dementia symptoms.
.

SCHEDULE:

Hope to have more family time during the next six weeks, so i may skip some blog weeks.
THIS WEEK along with daily Dementia Mentors’ video chats, i may (or may NOT) join

.
Thurs DAA Discussions
.
No DAA Discussion this week due to conference …

Also dont forget upcoming conferences below (which i will NOT be attending as i have no funding):
Jun 20-22: DAA conference in Atlanta GA on June 20-22 >> https://daanow.org and
Jun 24-26: LewyBody LBDA conference in LasVegas June 24-26 >
> http://www.clevelandclinicmeded.com/live/courses/lewy-body-dementia/ .

Teepa Snow’s next video Zoom, “Lets Talk”, open to all persons with dementia, will be held Tuesday July 23.  Requires prior registration.  Free webinar session for anyone living with dementia who would like to share ideas, concerns, experiences, partner issues or successes. The topics will be determined by the group. Can be kind-of frustrating working with the registration process, but if you get stuck there is a phone number of someone to help. That is what i needed to do, and so glad Teepa Snow provides a helper for this process. >> https://teepasnow.com/services/online-learning/live-public-webinars/webinars-for-plwd/ .

i hope to attend Teepa Snow’s conference November 17-19 >> https://teepasnow.com/pac-annual-conference/ .

* 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 17Jun2019. Tags are: computer, confusion, dementia, Living with Dementia, PLwD, symptoms, technology.

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