Fell Twice

Posted on November 24, 2020 by truthfulkindness

Wed update (25th) is that i messed up: i guess i got a bit complacent.
i hugged the dog, he knocked into my head and i got a NEW ball of swelling on my brow.
… So i am off FaceBook for remainder of evening and back to cold compresses.
Really hoping this will not create need for me to sleep reclining again instead of laying down. uggggh !

Tru here.

I am usually able to catch myself when falling, but the past month or so my balance has felt more precarious so i have avoided some of my standard activities (like playing hide and seek with the dog in the yard). But i fell twice last week.

Friday morning, i had an excuse because i was trying to herd a chicken off the ramp at back door — when i fell off the ramp.

Saturday morning still astounds me. Husband had everything prepared, and i had both knees on the bricks in front of wood stove to light the fire shortly before 5am. Then i fell on edge of the wood stove. i dont know how; it makes no sense — and NO i had not been drinking alcohol, LOL.

… so i got a quail-egg-size bump on my eyebrow.

i woke husband. He checked for concussion and stroke symptoms, then we got some rice bags from the freezer on my eye brow, but by 10am (5 hours later) the “eyeBrow” lump turned into a black eye that was swollen shut.

The eye looked so bad that we contacted an online video doctor and had a consultation that afternoon. He said he had seen plenty of others with “this”, so i asked “what do you mean by “this”, and he clarified ” plenty of others who get drunk and fall”. i tried to laugh and told him i have not been drunk since 1989. … Obviously he did not believe me because he reiterated that i need to avoid the “A” words; Alcohol, Aspirin, Advil, Aleve, (or any medication that contains aspirin, because aspirin thins the blood). He said to sleep with my head elevated in a recliner or something instead of flat in a bed. He said to rest and dont COUGH, dont move my head quickly, or do things that would cause blood pressure to go up. Wants me to see eye doctor on Monday.

Now Monday morning, (Nov 23rd) and i can finally squint to see from eye. Swelling is moving down to nose and jaw. Very colorful Lady this week with deep purple especially on the eye lid itself. (Much better than the black from yesterday.)

STRATEGIES:

Keep rice bags in fridge to minimize swelling. (But i also keep some not in fridge, for use in microwave).
Using bed-wedge to hold head at higher elevation than my heart. My wedge is wonderful in two positions; sitting up in a slightly-reclined position, or laying down with a comfortable rise.
Husband has taken over responsibilities for chicken care, and i am not leaving the inside of the house. Husband makes trips upstairs for anything stored in that area.
With my vision complications, we have clarified a system which makes it easier for me to find foods that are safe for ME to eat (Gluten-Free). We put my special dietary foods in ROUND Twist-Top containers, which is different than the rectangles for general household foods.
With only one eye operating, i need more light in the house.
i am learning new strategies because guessing placement of corners, walls, etc, is much more difficult with only one eye functioning, and loss of depth perception. Dog is staying in harness at all times, so he can help for balance. When he is “on break” (potty and playtime) or “off duty” (after harness has been removed for bed) then i am using walker with tray.

If YOU are questioning balance changes or stability, you might want to check out CraigsList for a used walker to have handy. Also grab a bed-wedge if you spot one.

LINKS:

WebMD at https://www.webmd.com/alzheimers/falls-falling#1 ;

Psychology Today at https://www.psychologytoday.com/us/blog/managing-your-memory/202008/does-dementia-cause-falls ;

. * 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. If you have a WordPress account, 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 23Nov2020. Tags: Balance, Dementia, Falls,

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Art Strategy with Tremor

Posted on November 20, 2020 by truthfulkindness

Tru here.

Summary:
Strategies i am currently using for tremor are “image stabilization” tool on iPhone,
and “StreamLine” tool in iPad’s ProCreate program.

DETAIL:

Many of my my friends with dementia have a “tremor”, or shaking of hand, neck, etc.
So i am not the only one.

Tremor is a possible risk factor for both Alzheimer’s and Parkinsons, which is caused by Lewy Body protein deposits, so closely associated with Lewy Body Dementia. (See NIH Link at bottom of page).
Also, tremor is a symptom of Vascular Dementia (see Johns Hopkins Medicine Link).

15 years ago, My essential tremor was much helped by a little bit of alcohol intake.
so if i wanted to take photos, draw, calligraphy, etc, i would drink just a little bit of something alcoholic
and the tremors would decrease to something manageable.
. . . But Now my cerebro-vascular disease has increased, and
For the past several years alcoholic content no longer helps my tremors
(or if it does, it is not noticeable enough to help my artistic efforts).
My tremor increases with each year.

Important to recognize that
the nature of a “work-around” is almost always TEMPORARY;
the strategy “works around” (or “mitigates”) our dys-Ability
— until that particular ability declines to a point that the strategy is no longer sufficient to continue the activity.

These are the current tools i am using to stretch my artistic abilities a bit longer
– despite increasing tremor.

Photos: Mostly i have now lost ability to photograph, but i can still take blurry pictures using the combination of iPhone “image stabilization”, and by setting the phone against a solid un-moving surface such as doorsill, table, car, fence, etc.

Drawing and Calligraphy: In the past couple years all drawing and lettering have been a very long process. i would use erase-able pencil on paper, then when base was satisfactory i would scan to computer. Next step was to bring up scan and print several copies (because i already know i will mess up several when i trace with ink. Each separate element of my project would require these scanning processes, then i could combine in PhotoShop app.

But now i have an iPad with Apple Pencil. … with “StreamLine” tool in ProCreate app,
(which i used to create the cover art for this entry).
Right now, i set “streamline” tool at about 70% unless it is a really bad day, when i put it up to max 100%.

YouTube tutorial below was NOT made by me, but she mostly speaks slow enough for me to understand.

LINKS:

ZenDoodles at https://truthfulkindness.com/about/life-other/arts-crafts/zen-mar2020/ ;
NIH at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3142098/ and https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Tremor-Fact-Sheet ;
Johns Hopkins Medicine at https://www.hopkinsmedicine.org/health/conditions-and-diseases/dementia/vascular-dementia .
Web MD at https://www.webmd.com/brain/essential-tremor-basics#1 , and
Wiki at https://en.wikipedia.org/wiki/Essential_tremor .

Awareness of Cognitive Decline

Posted on November 6, 2020 by truthfulkindness

Question received:
“How do you deal with knowing what’s going on
… confusion, stress, anxiety, emotion(s) … ?
How do you handle all that?”

Tru here.

THANKS for asking our opinion as Persons Living with Dementia symptoms; Not knowing where you or your loved one are, on this dementia journey, makes it a bit more difficult to give specific suggestions.

Yes, you are quite correct;
Those of us who are aware of our decline have unique challenges.
Along with several of my friends, i think the most crucial strategies are:

Acknowledge,
Accept, and Grieve each step in Loss of Abilities and Behaviors that we associate with our uniqueness, along with the loss of aspects of relationships associated with those abilities and behaviors. This is a constantly-changing process, requiring repeated process of grief with each step.
In my observation, if we try to deny or “skip” those steps of grief, it usually results in extra frustration, resentment, and bitterness.
Something i wrote on this topic is here >> https://truthfulkindness.com/2015/08/18/loss-grief-choices-dementia-advocacy/ .

Focus:
We go thru the grief process in order to FOCUS on our remaining Abilities (instead of the growing list of Dys-Abilities). Here is a vid Chris Roberts made for this topic >>

Chris Roberts: Concentrate On What You Still Can Do from Dementia Mentors on Vimeo.

Peers:
We join peer groups that help accept our losses, and strategize work-arounds for those dys-abilities. Some of those peer groups are via text (FaceBook, Twitter, etc), and some are via Zoom video chat where we visit in our Living Rooms, etc. (see Links at the bottom of this page). When i am in video chat i FEEL normal, because these folks actually do understand my challenges – they experience them also. i am not alone.
Here is a vid from Robert Bowles out our peer group of Dementia Mentors at >>

Robert Bowles Discusses Becoming a Member of Dementia Mentors from Dementia Mentors on Vimeo.

Purpose:
i think another crucial strategy is to find purpose AFTER diagnosis. Each human needs purpose, and for some folks that purpose has now been de-railed by our dys-Abilities … so in those cases we need to find NEW purpose. For many folks, that new purpose is related to Dementia advocacy in some way.

Purpose notes:
My friend Robert Bowles has written about this here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/robert-bowles-jr/asap/ ,

You might want to check out “Dementia Success Stories” (online booklet) at >> 616 Stories 1d Complete 20150326dw BatesPgs .

We at Dementia Mentors have put together 125 short videos to assist Persons Living with Dementia (and also care-Partners). i picked out a few of these videos you might want to check out, then invite your Loved One to watch a couple.

Here is a vid i did on continuing time in exercise at >>

Truthful Kindness: Keeping up your Mobility from Dementia Mentors on Vimeo.

… and here is a vid retired doctor Jennifer Bute did on a “LifeBook” project at >>

Jennifer Bute: Preserving Memories with a Lifebook from Dementia Mentors on Vimeo.

BLOGS:

Personally i searched for quite a while to find Blogs written in first-person (by the person living with dementia symptoms).
For a long time i kept a listing but i am now losing those abilities.
In 2018 i shared these as my top selections >> https://truthfulkindness.com/links/plwd-blog-2018-rec/ .

For Peer groups:

i live in a rural area, so most of my associates are on FaceBook.
My favorite “mixed” text groups (for Persons Living with Dementia and also care-Partners) are
Harry Urban’s Forget-Me-Not groups (with separate groups for several types of dementia) and
Myrna’s “Dementia Middle Stages” group, along with loads and loads of other groups.

There are not a lot of texting groups for only Persons Living with Dementia symptoms, but some of the groups that i am part of (again on FaceBook) are
“Virtual Memory Cafe” (for Dementia Mentors members),
Sandra’s group “Living Healthy with Early Onset Dementia”, and
Kerry’s group “Just for People with Early Onset”.

Organizations for those of us living with dementia symptoms include
Dementia Mentors https://www.dementiamentors.org/ ,
Many projects with Dementia Action Alliance https://daanow.org/ , and also
Dementia Alliance International https://www.dementiaallianceinternational.org/ (which is both by and only for Persons with a diagnosis of full dementia — Mild Cognitive Impairment is not included in membership).

LINKS:

my most crucial entries at https://truthfulkindness.com/category/important/crucial/ .

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

Dementia Action Alliance at https://daanow.org/ .

If you have a WordPress account then you can leave comment here, otherwise
please send questions on FaceBook MESSENGER Private Message to Truthful Kindness.

More Pgs in October

Posted on October 30, 2020 by truthfulkindness

Tru here.

!! Remember, Links are on 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 on colored text, not the pictures.

Latest pages added to my website are:

Myrna “This Will be ME” at https://truthfulkindness.com/index-persons-with-dementia-pwd/myrna-norman/this-will-be-me/ ;

Family History: James Stanclift the Stone-Worker at https://truthfulkindness.com/about/life-other/family-history-index/james-stanclift-stone-worker/ ;

BnP Memoirs: October WeekEnds at https://truthfulkindness.com/bnp/part-2/2b/oct-weekends/ ;

Including the Snow White picture here, because growing up my appearance was often compared to others, including Snow White.
Mom objected to comparisons with movie stars, but we both enjoyed the fantasy animals in Snow White.
My hair was nearly black, with short forehead and the ultra-light complexion for Snow White.

LINKS:

Most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/ ;

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

QUESTION:
Does anyone USE the schedule with explanations that i have been supplying here at the bottom of my pages ?
If so, then please let me know, because i am thinking they might be clutter.
If you have WordPress account then you can leave comment here, otherwise
please send answer on FaceBook MESSENGER Private Message to Truthful Kindness.

If you have questions about any of these Zoom video chats, and you have a WordPress account then you can leave comment here, otherwise
please send question on FaceBook MESSENGER Private Message to Truthful Kindness.

Caregiver Focus

Posted on October 25, 2020 by truthfulkindness

Tru here.

To Care-Partners … and “Care-Givers”
(which to ME means that they feel the relationship is all “giving” on their side of the relationship — and no “getting”;
their loved one has lost all choices,
with no ability to become a “partner” in their own personal care).

This poster was shared in a “mixed” group (of folks with and without dementia):
“Caregivers go through more than they will ever tell you.
They give up a lot and rarely have a social life.
They can get sick and emotionally worn out.
It’s a lot for one person and you will never know until you have walked the road of a caregiver.”
— Lessons Taught by LIFE .

This poster is true — those sacrifices have been a part of life in communities all over the world since ancient times.
We had my great-grandmother living with us when i was about 8 years old.
When you look at census results for 1800s, you see that caring for ill or aging loved ones was still an expected part of adulthood in the 1800s.

it is only in the past century or so that the “circle of life” was hidden by care facilities.

Before the Person WITHOUT Dementia challenges
gets too wrapped in their “burden” perspective,
it would be nice if they consider the perspective of the Person Living with Dementia symptoms.

Most of us lost social life long ago,
and we have been emotionally exhausted since before we needed a care-partner.

Extra energy is spent on all sorts of things
(that we WISH you would begin to research and realize,
so that maybe we could get more on “the same page” for a possible PARTNERSHIP in care).
(see Links below)

Much of living with dementia symptoms is the depletion of CHOICE.
Choice is a privilege that is disappearing for us in so many ways, along with context.
Soooo …

Loss, whether temporary or permanent, must be acknowledged and grieved
in order to again gain perspective and move on.

It is important for care-partners to acknowledge loss:
— Permanent losses in aspects of their relationship with their loved one …
and also TEMPORARY loss in aspects of their own personal life.
Those losses must be acknowledged and grieved.

It is also crucial for the Person Living with Dementia to acknowledge THEIR losses … and grieve aspects of life and relationship that will never return
– especially the loss of choice in different areas of life. (see Links below).

Unfortunately none of these losses are temporary — they are all permanent and create growing frustration and sometimes panic,
with the feeling of running out of time.

As Persons Living with Dementia,
one of our biggest challenges is to accept and grieve those losses,
but to keep perspective by
FOCUS on the choices, abilities, and levels of relationship with every living thing that we still have …
while we still have them
(because we live with the knowledge that every one of these relationships will also be incrementally removed).

If we cannot accept and grieve these incremental losses,
then it will almost inevitably result with major “behavior problems”, both in current time, and in the future.

The FOCUS on caregiver burden creates feeling that
those living with dementia should suicide while we still have the choice and ability,
… in order to avoid creating that burden for our loved ones.

is that what you really WANT ??

If not, then recognize (acknowledge) the losses, and grieve them …
but then move on to FOCUS on what is possible
instead of what is lost.

That is what those of us with dementia symptoms must do.

— *** —

Many folks feel there are definite benefits to having those experiencing dementia symptoms within the group,
providing the unique first-person perspective which those who have experienced these symptoms can share.
So … Suggest the listing of caregiver sacrifices be addressed to groups of caregivers-only.

Husband supplied this closure:
“Relationships in the circle of dementia-care and support need to change or evolve as time goes on.
As my wife said (above) each partner in this circle needs to acknowledge and incorporate change in that relationship. Failure to acknowledge and appropriately address these changes leaves that circle with a flat spot or bump, depending on the circumstances. In the daily progression of life, each time that spot is reached there is a definite problem in the relationship.
Therefore i repeat “It is very important for all members of the circle to make their adjustments gradually and with purpose”. — Guy Burnett

— *** —

If you want these blog entries to show up in your eMail every time i write, then
subscriptions are available through a “follow” button at the bottom of your page (right above Links for “Categories”, Recent, and Archives.)

LINKS:

Time and ENERGY consumption at >> https://truthfulkindness.com/2015/07/20/time-energy-consumption-dementia-symptoms/ ;

Path THRU Loss and Grief at >> https://truthfulkindness.com/2015/08/18/loss-grief-choices-dementia-advocacy/ ;

Top Tip >> https://truthfulkindness.com/2017/04/21/pwd-grieve2accept-dx-purpose/ ;

AfterEffects of CareGiving (book) at >> https://www.amazon.com/Aftereffects-Caregiving-Gary-Joseph-Leblanc/dp/1478759828/ ;

ConversationalWordSentences

Posted on October 18, 2020 by truthfulkindness

Tru here.
Have written on this topic several times, because every year my symptoms are more severe, and past few years my understanding of spoken words is where i am slipping most. .

i now attend very few video chats with my friends, because even with the assistance of watching lips,
i understand very little of the conversation. .

My hearing itself has not changed, but Lately when i am in conversation,
i hear one large collection of sounds, instead of individual words in a sentence.
and i think i am missing most of the consonants.

Instead of hearing “how was your night”,
i hear “ow uz unight?”,
or even “owuzu Might?”
… which makes it very difficult to understand and reply.

This problem is compounded by the fact that i still speak at a quicker pace than what i am able to process sounds from others.
(Just as i type and write much better than my ability to understand written words and sentences,
whether i wrote them, or someone else did.)

… the only tips (other than my previous suggestions, in Links below) are:

i will try to speak at a slower pace, modeling the rate i wish others would speak.
i will try to clearly separate words,
enunciate consonants very clearly, and
give extra time between words and after sentences.
Especially allow extra time between change of topic.
in the same way that i am hoping that YOU, (the other person in my conversation) will also do those things.
Everything else i can think of is already written in my prior strategies below.

SOOooo
Better understanding of the SYMPTOM is here with
“Floating Words” >> https://truthfulkindness.com/2018/12/31/floating-words/ , and here with
“No Meaning for Words” >> https://truthfulkindness.com/2016/09/06/no-meaning-for-words/ .

Past pieces i have written on Verbal Comprehension STRATEGY are here >> https://truthfulkindness.com/2014/12/12/verbal-comprehension-strategies-1/ and here >> https://truthfulkindness.com/2019/10/20/verbal-comprehension-strategies-3/ ;

.. ..

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

i am attending few Zoom groups right now.

Calendars will eventually be removed to prevent over-Loading the upLoad limit for website “Media Library”, because they actually take quite a bit of mb.

Disclaimer that i misunderstand things and make mistakes too, so there might be mistakes in Calendar. — *** —

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

DAILY at DM (Dementia Mentors): we host more than 40 virtual memory cafes each month. These are “member-only” gatherings for those living with dementia (every day except Sundays for persons living with some form of dementia — and also twice-monthly for Partners on Sundays). More info here >> https://www.dementiamentors.org/ .

To be part of Dementia Mentors’ video chats, membership form is at >> https://bit.ly/DM2020contact .

Video “tour” is at >> https://vimeo.com/showcase/3464118/video/264048358

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

These are OTHER events i know of during this week:

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

19 Oct, Mon: Dementia Mentors’ (members only) SMALLEST gathering is currently Monday afternoons (so am highlighting it here on my blog). 10am Hawaai, 1pm Pacific Time, 2pm Mtn, 3pm Central, 4pm Eastern, 9pm UK, and 10pm South Africa. Membership form is at >> https://bit.ly/DM2020contact .

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

20 Oct, Tues; FTD Patient Support Group on Tuesdays, (members only): If you have a firm diagnosis of Fronto-Temporal Degeneration and would like to join the FTD Patient Support group, please contact sherylwhitman.FTD@gmail.com. The group also has a video Zoom meeting every Tuesday; 10am Pacific time, 11am Mountain time, 12 noon Central, and 1pm Eastern time. Members-only. https://www.theaftd.org/living-with-ftd/support-for-people-with-ftd/ .

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

20 Oct, Tues; DAA Drop-in with Dr Susan on Tuesdays: While COVID-19 is impacting everyday life, please join us at the Dementia Action Alliance for an online discussion with Susan Wehry, MD Tuesdays at https://zoom.us/j/4567882023 ((1pm Pacific Time, 2pm Mtn, 3pm Central, 4pm Eastern, 9pm UK, and 10pm South Africa)).

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

21 Oct, Wed: LBD Living with Lewy (members-only): Membership is limited to those diagnosed with Lewy body dementia. These video Zoom gatherings are part of the “Living with Lewy” FaceBook support group, so you must be on FaceBook and a member of that specific FaceBook group. Members-only. https://www.lbda.org/go/virtual-groups .

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

21 Oct, Wed: Dementia Mentors’ (members only) are offered Wednesday-night guided meditation series. (( 6pm Pacific Time, 7pm Mtn, 8pm Central, 9pm Eastern, 2am UK )). Members-only. >> https://bit.ly/DM2020contact .

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

22 Oct, Thursday: DAA Discussion topic …. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time. 6pm London, 8pm South Africa. Link to join is at this page >> https://daanow.org/online-discussions/ .

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

23 Oct, Friday: DAA Faith Hope and Love; using spirituality through challenging times. Fridays at https://zoom.us/j/4567882023 (( NEW TIME: 10am Pacific Time, 11am Mtn, 12 Noon Central, 1pm EASTERN time, 6pm UK, and 7pm South Africa )).

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

Mark Your Calendars for future events:

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

27 Oct, Tuesday, is next Dementia Chats with Lori LaBey. (4th Tuesday). 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 . ((4th Tuesday of each month, 7:30am until 9am Pacific Time, 8:30 until 10am Mtn, 9:30am until 11am Central, 10:30am until 12 noon Eastern, 3:30pm until 5pm UK time , and 4:30pm until 6pm South Africa)).

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

5 Nov, Thurs: Dementia Mentors’ Christians (members only) are offered “Christian” gathering on 1st and 3rd Thursdays of each month. This is non-denominational Christian group for fellowship and prayer. (( 9am Pacific Time, 10 Mtn, 11 Central, 12 noon Eastern, 5pm UK, and 6pm South Africa)). Members-only. >> https://bit.ly/DM2020contact .

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

18 Nov, Wednesday, Teepa Snow has “Lets Talk” video chat with Persons Living with Dementia. (( 10am Pacific Time, 11am Mtn, 12 noon Central, 1pm Eastern, 6pm UK, and 7pm South Africa )). at https://teepasnow.com/services/online-learning/webinars/webinars-for-plwd/ .

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

Dirt Road In Autumn With Early Morning Fog - Foggy Autumn Dirt Road@seekpng.com

. * 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. If you have a WordPress account, 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 18Oct2020. Tags: alzheimers, communication, conversation, dementia, PLwD, relationship, verbal comprehension, visit .

Technology Changes

Posted on October 2, 2020 by truthfulkindness

.Tru here.

(insert graphic for FaceBook)

Two weeks ago FaceBook enforced format change, and i became unable to use the social network (until i found a provider with work-around allowing Classic format once again). This has also been review by both CNet and PCWorld (altho i have lost those Links now). With F.B.Purity, i again have access to my dementia friends who use FaceBook. https://www.fbpurity.com/

(insert graphic for “Zoom” for people with dementia)

Zoom enforced format change last Sunday, and it is causing panic and confusion amongst those of us with dementia symptoms.

(insert graphic for feather pen in bottle of ink)

Then last night WordPress forced change in editing format, so writing in my blog has become a brand-new project.

(insert graphic with angry face). uggggh !!!

These new and “improved” technological changes are extremely hard for folks who have lost the ability to mentally “erase” and “re-write” !!!

(insert graphic for Link to my entry on “erase and re-Write”) ((with single “enter” button in html format for new line)) available at https://truthfulkindness.com/2016/02/15/drt-communication-erase-re-write/ .

… and today i spent WAY too long trying to figure out how i can add a simple picture in my blog !!! This is SO very frustrating, and FAR from dementia-friendly !!! i click all the little icon pictures, then forget which ones i have clicked, so click-again , and again, and again. i wrote to the help desk, and they were no “help” whatsoever.

When i analyzed providers for blog space as a person with decreasing abilities, WordPress was clearly the best in 2014, but WordPress is failing with their new and “improved” version, that is for sure !

growl-snarl ! i may not write blog entries very much any more, at this rate.

Okay. Finally found something that gave me ability to insert a single picture from my media file, for top of my blog entry. … But now i forgot how i did it. When i figure out how i did it, i will write the steps here: (Update 12Oct2020).

“plus sign” + in upper left corner, (not the icons that show when you move your cursor).
scroll to about the middle of “media” section.
Select “image”, then when the new window comes up, center option is “Select image”
Click “media Library”, click the picture wanted, then click “select in lower right corner.
This will add picture in your screen, and you need to re-size with drag technique (because there is no pre-size selection process)

Now to figure out how to switch to html view, so that i can go to next line without adding a double-row paragraph. If/when i figure that out, i will write the steps here for single line break. Also, Last week i collected a bunch of html pieces for embedding graphics without using my precious media allowance … but until i can LEARN and RETAIN these new techniques then those hours were wasted (because i dont have a tab to change to html-format). Growl-snarl !!!

Three dots in the top right corner of window give options.
Second category is “Editor”, and “Code editor” is second choice within that category (or you can maybe REMEMBER the keystrokes …………………..Cntrl-Shift-Alt-M.
While in html format, add “<br>” where single line-break is wanted.

UPDATE 12Oct2020 … Dont remember how i got here, but i am now in html. i see blue text near top of screen that says “Exit code editor” . Obviously that is how to get out.

Summarizing, Until now, i could help others with dementia, and i felt WordPress fell a bit short of “dementia-friendly”, but considering tools for “tags” and social networking, i felt WordPress was one of the best choices. (insert single line-break with html).
Now i can no longer say that. (insert single line-break with html).
WordPress is now very VERY far from dementia-friendly. There must be other choices that do not require this much remembering of what the little icons mean, and complicated processes for simple things.

i strongly suspect that i will not be able to continue this blog in the same weekly manner, and sharing from other folks with dementia also became much more complicated.

Will keep trying for a while, but change is inevitable in technology, and also change is inevitable in brains that are in process of decay. Those two aspects of “change” dont work well together.

(insert graphic of heart)

Going to try copy/paste for calendaring portion of blog entry, but it may be gobble-dee-gook without pasting it in html. YaY !!! At least i have THOSE graphics ((smile face)).

— *** —

UPDATE: Now able to add graphics and single line-breaks in html. Someday i will try to learn the technique to “embed”, but i am maxed for now.

LINKS:

Text Format >> https://truthfulkindness.com/2019/03/04/text-format-dementia/

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

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

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Calendars will eventually be removed to prevent over-Loading the upLoad limit for website “Media Library”, because they actually take quite a bit of mb.

Disclaimer that i misunderstand things and make mistakes too, so there might be mistakes in Calendar.
— *** —

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

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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 02Oct2020. Tags: .blog, blogging, change, dementia, dementia friendly, PLwD, strategy, technology, WordPress .

Dementia Mentors in Our Words

Posted on September 27, 2020 by truthfulkindness

Tru here. .

((Sometimes we get a little bit silly))

At Dementia Mentors, we host more than 40 virtual memory cafes each month.
These are “member-only” gatherings for those living with dementia
(every day except Sundays for persons living with some form of dementia
— and also twice-monthly for Partners on Sundays).
More info here >> https://www.dementiamentors.org/ .

… In Our Words:

Barry (DM Alumni not pictured)

at video at https://vimeo.com/102788408 .

Bill (not pictured)

“Dementia Mentors is becoming a close family to me.”
— Bill on 04Sep2020

Claire (not pictured)

Until I met some of you that Tuesday two weeks ago I literally thought I was just supposed to count down the days till I’d be fortunate enough to die.

I had no idea how successfully we could all keep living, in the midst of this
-or for how long-and with such joy!

It is life-changing to have you all in my life. I am re-thinking my future.
— Claire on 02Aug2020

Creeky

When I was diagnosed 6 years ago @ 59, my dad was in mid to late stage Alzheimers & all I knew was the end stage.

I didn’t know there was life after diagnosis until I found
Dementia Mentors Virtual Cafés & other groups.

Not only do we share laughter & concerns, we learn from each other. We learn how to adjust to our diagnosis, how do things differently as our abilities change, and how to live a good quality purposeful life.

I’m deeply grateful to Gary Joseph LeBlanc, Truthful Loving Kindness, Delores, Larry, Tim, & everyone who keeps the Cafés going.

Please remember you’re not alone. We’re in this together.
— Creeky on 26Sep2020

Deborah

Without this group of fun-loving folks, I’d still be sitting alone in my apartment.

Meeting others with dementia made me finally realize that there is life after diagnosis.
To discover people who laugh, smile, and truly care about each other is so refreshing. They guided me through the painful changes that I was experiencing.

They showed me how to smile and learn there was opportunity for my new “normal”.

Join us at one of our many meetings. You will not regret it.
And you may meet some folks who might be wearing “goofy hats” and giving you our signature hand wave.
Hope to see you soon!
— Deborah on 30Jul2020

…

Elmarie

Dementia Mentors is where all my friends and family lives in “zoom”
Because we are all in the same boat aka all have some form of dementia.

We laugh and cry together. Exchanging coping skills.
We believe in fairies, unicorns and having fun.

I love that we can share about our dogs, cats and chickens.
I’m grateful to be part of DM
— Elmarie on 25Sep2020

Kelly

I joined this group at a very low point in my life.
An old friend invited me to join.

I was ready to call it quits but with the help of the group I found happiness again.
Now about three years later they are my go to family for fun and help.
Thank God for them.
— Kelly on 27Sep2020

Marion

Dementia Mentors to me is making a new friend.
One who understands how I feel. Shares their experience strength and hope.
One you can laugh and cry with. They are a true friend for life.
— Marion on 25 Sep 2020

Marsha

DM café chats have given me light.
Being diagnosed with Dementia at age 57 in 2014 was very dark. I prepared to die.
But then, medication helped. Change of diet helped
and met these wonderful new friends who helped me see the light.

We laugh and have fun.
We get serious and offer our experiences hoping to help.
Which DOES help.

Having Alzheimer’s or any cognitive impairment is challenging. With friends by our side we can find new purpose.
Our families can relax when they see and hear our laughter.

It does not have to be the bitter end.
It can be a new chapter, new purpose and a fulfilling life until the end.
And the end gets further away as we enjoy each day.

Thank you Dementia Mentors! Gary LeBlanc, Tru, Delores and all it’s a great support system.
Visit and see if you find a spark of light.
We’re eager to meet you.
— Marsha 04Sep2020

…

Peter

“Joining Dementia Mentors got me away from the isolated world I had got used to,
it is by far my best social activity”
— Peter 31 Aug 2020

…

Robert (in “tour” picture below)

see vid at https://vimeo.com/189559568 .

Terrie (not pictured)

The Dementia Mentors Group is a lot of fun.
As the photo dhows everyone is open, honest, friendly and supportive. Different themes is a norm, laughing and smiling is an automatic reaction.
Every meeting is a blast….. — Terrie 24 Sep 2020

Tim

“Dementia Mentors saved me from the terrible seclusion and mental pain from diagnosis of dementia brings.

When I found this group it was a bright light shining in a vast blackness.
These wonderful people became my, replacing those family and friends who forgot all about me.

I was shown a path to learn how to live with this disease.
As much as I despise dementia, I love all of the people from the bottom of my heart. ”
— Tim 25 Sep 2020

Tru

Tru here. I was part of the original group when Dementia Mentors was formed 01 Jun 2014 (altho we started making videos in February LOL).
I had tried mixed groups (with lots of care-partners and a few persons with dementia) but still felt off on my own, and could not connect well.
Finding a peer group of others living with dementia was a breakthrough in how i dealt with my own symptoms.

Dementia Mentors is not only an online texting peer group, but, thru virtual Zoom video Link, we visit in each other’s homes almost every day of the week — without leaving the safety of our own home.
During virtual chat, others can understand my symptoms, and i can understand theirs.
We are all “normal” — while we are within the group. … and none of us is alone. This is not a formal “support group”, and you will sometimes find us VERY casual (and silly) ! The feeling is usually like a family gathering around the kitchen table, because we are FAMILY.
— Tru

Vicki

Dementia mentors chat has truely been a life saver for me especially through this virus Time.
I have no family and only 3 friends I can safely be around.
It’s so great to get to see people and talk.

I’ve been encourage and supported in so many ways!
Thank you so much!!!
— Vicki on 30 Aug2020

…

Video “tour” is at >> https://vimeo.com/showcase/3464118/video/264048358

— *** —

LINKS:

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

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

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

Mentoring Poster at https://truthfulkindness.com/2014/08/13/new-poster-for-dementia-mentors/ ;
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i am attending few Zoom groups right now.

Calendars will eventually be removed to prevent over-Loading the upLoad limit for website “Media Library”, because they actually take quite a bit of mb.

Disclaimer that i misunderstand things and make mistakes too, so there might be mistakes in Calendar.

— *** —

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

DAILY at DM (Dementia Mentors): we host more than 40 virtual memory cafes each month.
These are “member-only” gatherings for those living with dementia
(every day except Sundays for persons living with some form of dementia
— and also twice-monthly for Partners on Sundays).
More info here >> https://www.dementiamentors.org/ .

To be part of Dementia Mentors’ video chats,
membership form is at >> https://bit.ly/DM2020contact .

Video “tour” is at >> https://vimeo.com/showcase/3464118/video/264048358

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

These are OTHER events i know of during this week:

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

28 Sept, Mon: Dementia Mentors’ (members only) SMALLEST gathering is currently Monday afternoons (so am highlighting it here on my blog). 10am Hawaai, 1pm Pacific Time, 2pm Mtn, 3pm Central, 4pm Eastern, 9pm UK, and 10pm South Africa. Membership form is at >> https://bit.ly/DM2020contact .

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29 Sept, Tues; FTD Patient Support Group on Tuesdays, (members only): If you have a firm diagnosis of Fronto-Temporal Degeneration and would like to join the FTD Patient Support group, please contact sherylwhitman.FTD@gmail.com. The group also has a video Zoom meeting every Tuesday; 10am Pacific time, 11am Mountain time, 12 noon Central, and 1pm Eastern time. Members-only. https://www.theaftd.org/living-with-ftd/support-for-people-with-ftd/ .

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

29 Sept, Tues; DAA Drop-in with Dr Susan on Tuesdays: While COVID-19 is impacting everyday life, please join us at the Dementia Action Alliance for an online discussion with Susan Wehry, MD Tuesdays at https://zoom.us/j/4567882023 ((1pm Pacific Time, 2pm Mtn, 3pm Central, 4pm Eastern, 9pm UK, and 10pm South Africa)).

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30 Sept, Wed: LBD Living with Lewy (members-only): Membership is limited to those diagnosed with Lewy body dementia. These video Zoom gatherings are part of the “Living with Lewy” FaceBook support group, so you must be on FaceBook and a member of that specific FaceBook group. Members-only. https://www.lbda.org/go/virtual-groups .

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30 Sept, Wed: Dementia Mentors’ (members only) are offered Wednesday-night guided meditation series. (( 6pm Pacific Time, 7pm Mtn, 8pm Central, 9pm Eastern, 2am UK )). Members-only. >> https://bit.ly/DM2020contact .

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01 Oct, Thurs: Dementia Mentors’ Christians (members only) are offered “Christian” gathering on 1st and 3rd Thursdays of each month. This is non-denominational Christian group for fellowship and prayer. (( 9am Pacific Time, 10 Mtn, 11 Central, 12 noon Eastern, 5pm UK, and 6pm South Africa)). Members-only. >> https://bit.ly/DM2020contact .

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01 Oct, Thursday: DAA Discussion topic …. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time. 6pm London, 8pm South Africa. Link to join is at this page >> https://daanow.org/online-discussions/ .

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02 Oct, Friday: DAA Faith Hope and Love; using spirituality through challenging times. Fridays at https://zoom.us/j/4567882023 (( NEW TIME: 10am Pacific Time, 11am Mtn, 12 Noon Central, 1pm EASTERN time, 6pm UK, and 7pm South Africa )).

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Mark Your Calendars for future events:

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14 Oct, Wednesday, Teepa Snow has “Lets Talk” video chat with Persons Living with Dementia. (( 10am Pacific Time, 11am Mtn, 12 noon Central, 1pm Eastern, 6pm UK, and 7pm South Africa )). at https://teepasnow.com/services/online-learning/webinars/webinars-for-plwd/ .

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27 Oct, Tuesday, is next Dementia Chats with Lori LaBey. (4th Tuesday). 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 . ((4th Tuesday of each month, 7:30am until 9am Pacific Time, 8:30 until 10am Mtn, 9:30am until 11am Central, 10:30am until 12 noon Eastern, 3:30pm until 5pm UK time , and 4:30pm until 6pm South Africa)).

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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 2020Sep27. Tags: .dementia, Dementia Mentors, memory cafe, PLwD, social activity, relationship, video chat, Zoom

html Hidden:

Added this Week on Relationships

Posted on September 20, 2020 by truthfulkindness

Tru here.

For me,
this time of year is a time of introspection and self-analysis for RELATIONSHIPS;
relationships with Self, Creator, Family, Friends, and Community (seen and unseen).

TEASER: Finished some pages on RELATIONSHIP (listed below),
but also very hard-at-work on an index of Links for Symptoms and Strategies from me and some of my friends.
The project has 10 hours invested so far, and estimate additional 10 to 20 hours for completing the project. ((anticipation))

This week Finished a page for Harry Urban (on relationship with SELF and disease/illness):

LIVING with Dementia at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/living-dementia/ ;

and Family relationships:

“Bee Naughty” (when children were removed from parent due to lack of funds) at https://truthfulkindness.com/about/life-other/family-history-index/bee-naughty/ ;

— *** —

LINKS:

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

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

Most recent are here >> https://truthfulkindness.com/
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i am attending few Zoom groups right now.

Calendars will eventually be removed to prevent over-Loading the upLoad limit for website “Media Library”, because they actually take quite a bit of mb. Calendar Expired.

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Hard Times

Posted on September 14, 2020 by truthfulkindness

Tru here.

With recent death in the family, poor-to-hazardous air quality for all family members, and some other serious health concerns, my focus is spotty-at-best right now.

So, for a while, mostly will share projects that are almost finished, or not quite as helpful as i would like (but no time and concentration to make them better right now).
Expect things will improve by October.

!! Remember, Links are on colored text, not the pictures !!

Latest pages added to my website are:

Family History:

Song for Casey at https://youtu.be/OChLgO9M0r8 ;

GrandFather’s Story at https://truthfulkindness.com/about/life-other/family-history-index/grandfathers-story/ ;

About Me:

My Favorite Things at https://truthfulkindness.com/about/about-me/favorites/ ;

Recipe:

Orange Chicken with Rice at https://truthfulkindness.com/about/life-other/food-recipes/orange-chicken-rice/ ;

— *** —

LINKS:

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

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

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

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

i am attending few Zoom groups right now.

Calendars will eventually be removed to prevent over-Loading the upLoad limit for website “Media Library”, because they actually take quite a bit of mb. Calendar Expired.

Disclaimer that i misunderstand things and make mistakes too, so there might be mistakes in Calendar.

.
— *** —

.*. . .*. . .*. SCHEDULE: .*. . .*. . .*. ((Schedule EXPIRED))

Person with Dementia Symptoms

Please pass on Dementia Awareness by Sharing:

Like this:

Please pass on Dementia Awareness by Sharing:

Like this:

Please pass on Dementia Awareness by Sharing:

Like this:

!! Remember, Links are on colored text, not the pictures !!

Please pass on Dementia Awareness by Sharing:

Like this:

Please pass on Dementia Awareness by Sharing:

Like this:

i am attending few Zoom groups right now.

To be part of Dementia Mentors’ video chats, membership form is at >> https://bit.ly/DM2020contact .

Video “tour” is at >> https://vimeo.com/showcase/3464118/video/264048358

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These are OTHER events i know of during this week:

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Please pass on Dementia Awareness by Sharing:

Like this:

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

Please pass on Dementia Awareness by Sharing:

Like this:

… In Our Words:

Video “tour” is at >> https://vimeo.com/showcase/3464118/video/264048358

i am attending few Zoom groups right now.

To be part of Dementia Mentors’ video chats, membership form is at >> https://bit.ly/DM2020contact .

Video “tour” is at >> https://vimeo.com/showcase/3464118/video/264048358

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

These are OTHER events i know of during this week:

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

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

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

Mark Your Calendars for future events:

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

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

Please pass on Dementia Awareness by Sharing:

Like this:

i am attending few Zoom groups right now.

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

Please pass on Dementia Awareness by Sharing:

Like this:

!! Remember, Links are on colored text, not the pictures !!

i am attending few Zoom groups right now.

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

Please pass on Dementia Awareness by Sharing:

Like this:

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To be part of Dementia Mentors’ video chats,
membership form is at >> https://bit.ly/DM2020contact .

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