Dementia Underwear

Tru here.  Dementia advocacy has been on back burner, and will be for close to a year.  But, as always, I’ve been very busy, so haven’t written about dealing with dementia symptoms much lately.  That doesn’t mean I haven’t been dealing with them tho.

Past few days having added problems with clothes.  Husband asked about it when I had been “getting dressed” for about an hour.  I was still undressed, sitting on bed, huffing.  Explaining kind-of clarified problem.

Getting dressed takes much longer time now, so more time for interruptions.  Gotta go potty, then since i am at sink i realize might as well wash face and brush teeth.  So return to sitting on bed getting dressed.  Obviously not dressed, but i have undies on … So lately, every day i wonder; did i already change them ?

Helpful to have a partner in caring for myself; husband had suggestion.  So now writing day of week on front of undies.  Hopefully this makes my day go easier (at this stage) because i can check my cell phone to see what day it is, and that clarifies things.

* 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. With the new terminology, 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 © 2017-10/22. Tags are alzheimers, clothing, dementia, dressing, strategy.

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TLK Strategies 2017Speech Spiritual

Tru here.  This is transcript for “Psychological” section of my speech on Person-Centered Compensation Strategies.
Dementia Action Alliance 2017 conference in Atlanta GA on 2017-Jul 27.
This is the second of four quadrants and Video Link is at bottom of Blog Posting.
Further detail for various aspects are also in Links at bottom of Blog Posting.

Okay … Spiritually what are my current Abilities, dys-Abilities and strategies?

I think spiritual life may carry stronger feelings than any other category.
For many folks this is what guides the ship
… but for others it makes them really uncomfortable, so I’ll keep this short.

First, I want to note the “Wings of Prayer” drawing by Sunny Chandra of Singapore,
and the meditation drawing from McNair Scholar’s Rock.

Maybe YOUR spiritual strategies involve connecting with the earth thru gardening, or time with the woods, desert, or ocean.
… To each his own.

As the Person loses ability to travel and control of their time, their clothing, and their environment, their Belief System may become cloudy and inconsequential,
or it might become even more crucial to their identity and personal well-being.

Theology has been a major interest of mine since I was very young.
But now I don’t remember the ancient languages of scripture.  The words are familiar, but meanings are lost.

So since dementia intensified, prayer and relationship has taken priority.

Also, my more recent belief changes are getting fuzzy;
Why did I decide that ?
and when reminded, I only remember for a few minutes.

Beliefs, rituals, and hymns from my younger years are again comforting.
I know that I disagreed with some of the theology
… but I don’t remember why.

So this year we had a Christmas tree again.

I remember I had strong reasons for discontinuing a tree but …

When I ask my husband why we don’t have a Christmas tree (over and over again)
… It’s time to have a Christmas tree again.   ((LOL))

And now it’s different.
With my dementia symptoms I don’t remember the theological background;
I remember the family moments from my youth.

While many aspects of life are declining,
my spiritual life is continually growing.
Non-word communication creates an unbelievably rich exciting relationship connection!

For me personally, Creator’s love is the anchoring absolute of my life.
It’s the lodestar of truth
that anchors the circumstances I find myself in,
and guides my decisions,

…  so I have a separate blog for my spiritual journey.

.

.LINKS.

Link for this 3-minute section is now available on YouTube at >> https://www.youtube.com/watch?v=COW1IK6Pq6c&list=PL2E2lPBsUeBigMbOdZSWBRZzPmR711zWM&index=11   <<

Transcript of Introduction for speech was in my last blog entry at  >> https://truthfulkindness.com/2017/07/25/strat-17sp0-intro/ .  First quadrant transcript was https://truthfulkindness.com/2017/08/14/strat-17sp1-psych/ .  This entry has second quadrant, and following quadrants will be my next blog entries.  Next will be Social Dys-Abilities, Abilities, and Strategies.  … but if you just cannot wait, the entire session (over 1hr including both Laurie’s and my presentations) is on YouTube at >> https://www.youtube.com/watch?v=nZTCAlfg_Zg&list=PL2E2lPBsUeBigMbOdZSWBRZzPmR711zWM&index=1&t=9s  <<

LINKS with further detail on some of the above:

((  Spiritual Blog at >>  https://tlk4spiritual.wordpress.com/  ))

Blog entries HERE that are “spiritual” in nature >>  https://truthfulkindness.com/category/spiritual-aspects/

Loss for recent belief changes >>  https://truthfulkindness.com/2015/12/15/spiritual-journey-dementia-symptoms/

.

* 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. With the new terminology, 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 © 2017-08/28. Tags are alzheimers, dementia, strategy, Dementia Action Alliance.

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TLK Strategies 2017Speech Psych

Tru here.
This is transcript and video Link for 10-minute “Psychological” section of my speech on Person-Centered Compensation Strategies.
Dementia Action Alliance 2017 conference in Atlanta GA on 2017-Jul 27.  Transcript and Link for introductory section of speech was given in my last blog entry.
This is the first of four quadrants and Video Link is at bottom of Blog Posting.
Further detail for various aspects are also in Links at bottom of Blog Posting.

…  What are my Psychological Abilities, dys-Abilities, & strategies ?  

.

One method for strategies
is capitalizing on the thinking processes that work best
— and minimizing reliance on those that work least. …

.

Neuro-Psych scores say
My abstract reasoning is still labelled “superior” & my visual processing is still very superior”,
so that’s helpful for … RESEARCH.
I still have good skills for Relationships, and my wRiting skills are mostly intact.
But … after 17yrs of decline, most everything else is really low.
Reading comprehension, ‘Rithmetic, & Remembering are the biggest holes that I need to work around.

Here we compare my Neuro-Psych math scores … over time:
I was in gifted math during grade school,
Business Student of the Year in High School, and worked in Accounting.
… So my math started very high.

Even after I lost my job due to what was probably my first small stroke,
arithmetic was still at 75th percentile.
That means still better than 75% of others with 2yrs college.
But as you can see it’s now dropped to 5th percentile.

Ugggh!!   Numbers, numbers, NUMBERS!
I no longer understand numerical concepts over about ten.
75 and 57 sound like the same amount to me,
and they look numerically like the same amount.
… So what can we do?

Remember my visual processing is still part of that good cheese …?
So my husband (motioning to back of room) — back there at the end –
will make a picture or a graph like he did right there (pointing).

I was feeling neuro-psych testing was a waste,
So he put together these graphs and this is one of them.
When I looked at all those pages with decreasing color,
… then I could see testing was not a waste of time .
So you might consider how Neuro-Psych scores could help YOU tailor strategies.
… at least until conditions change again .

George Huba is a person with Fronto-Temporal Dementia who has a PhD in Psychology.
His ideas capitalize on visual processing.
So check out some of his blog entries at hubaisms.com.
(Uh-oh; this isn’t the slide that has his name on it, but I can get it to you.)

… Now other Psych needs & work-arounds.

Some of my common Lewy Body symptoms that create problems are vivid dreams during the night & hallucinations during the day.

  • Lewy Body Dementia Association says ultra-vivid dreams and hallucinations are so common that they’re almost hallmarks of Lewy Body.
  • I have two kinds of dreams;
    either violent blood-and-guts dreams where I rescue and transport at-risk people
    … or reading emails from friends.
  • Never liked violent movies but my dreams would make great movies;
    They always have a happy ending (or usually), but always after lots of stress.
    ((uh-uh;  Hero, Lay down.  Thank you.))
  • My dreams are too graphic to say aloud. ((Hero Lay!  Thank you.  Good boy.))
    – which makes the point that if your loved one or patient is exhausted there might be a very good reason.
    Yes, they’re just dreams, but for a while after waking up,
    My bedroom environment is under the transposed environment from my dream.
    So I can’t tell which one is real.
  • Then I fall asleep again … only to begin a new episode in the same environment.
  • These dreams are more REAL in every way than day-time,
    And they are much more exhausting, so I fight sleep.
    Then in the day-time I wonder; Which one was real?
  • So I worried that my view of reality was being altered by these ultra-vivid dreams.
    Because running, hiding, getting shot and seeing others die is
    well it’s … bloody … hard WORK !”
    … and I desperately needed rest.  So …

Strategies for ultra-vivid dreams:

  • Sight doesn’t pop me out after a dream, because dream-reality is super-imposed over consensus reality,
    but my husband’s voice is immediately recognized – at least right now.
  • Psychiatrist conclusion is that I’m well-adjusted to both past and current trauma,
    so with his encouragement I take no drugs.
    But he’s given good insight that I’m not applying dream-happenings in my day-to-day interactions.
  • One of my most effective tools is a lap harp (which I was going to bring but there were complications).
    So I brought my newest, which is a pentatonic drum.
    I don’t try to remember any “songs”, but the notes can’t clash (that’s what pentatonic means basically – to me).
    … so I just PLAY.  And that is helpful for changing channels.

Okay; we’re still in Psych symptoms.
How about hallucinations?
Remember that altho hallucinations come later with many types of dementia,
They’re early with Lewy Body:

  • Before I got my dog, mostly I relied on other persons around me;
    is there a tick on me?” (for sight hallucination).
    “Is there a radio on?” (for sound hallucination).
    “Is there smoke;  something hot?”
  •  But when alone I rely on my dog:
    I was sure there was an injured bird fluttering at the porch door,
    but the dog’s lack of action told me it was an hallucination.
    The next day, I saw a bird standing – just standing on the kitchen floor.
    So I was sure it was an hallucination.  IT wasn’t; that one wasn’t. !!
  •   I have online peer groups, and I asked friends with Lewy Body Dementia, … so now:
    Retired Dr Jennifer Bute & I both use fresh coffee grounds to relieve bad smell hallucinations;
    Mike Matherly and I both use over-riding sound hallucinations with a louder sound,(but that can be difficult because of over-stimulation).
    …  Curry Whisenhunt suggested a journal for the Dr, etc.

So here’s a hard one; When you can’t rely on your own senses for a “reality-check”, and basic abilities of life are rapidly decreasing, change is extra scary.

So what strategies for stress and emotions?

Harry Urban is now living in his 14th year of living with Alzheimers.
He uses visualization to fool his senses into a short vacation.
For Me? I try to create constructive outlets for my emotions,
So I’ll enthusiastically pull weeds,
rip sheets for making rag rugs,
walk … or write.

Right now my most effective tool for grief-work is still writing,
… then adding a picture to what was written.
It can be as simple as pieces of paper behind the prose.
But this method provides a page for my life notebook.

Tactile memory:

Look closely at my dresser drawers,
I discovered that, just like kitties purr  when you visit them,
the suction cups from octopus will suck in and out on your skin if they like you.
So along with hickie-kisses from the octopus,
I brought home a stuffed toy to go on my dresser drawers.
So you get the idea; tangible objects to hold as you’re being reminded of the event.
… and I touch them every morning when I get dressed (because I have to move them in order to get to my underwear).

.LINKS.

Link for this 10-minute section is now available on YouTube at >> https://youtu.be/gr1h7Za3fhg   <<

Transcript of Introduction for speech was in my last blog entry at  >> https://truthfulkindness.com/2017/07/25/strat-17sp0-intro/ .  This entry has first quadrant, and following quadrants will be my next blog entries.  Next will be Spiritual Dys-Abilities, Abilities, and Strategies.  … but if you just cannot wait, the entire session (over 1hr including both Laurie’s and my presentations) is on YouTube at >> https://www.youtube.com/watch?v=nZTCAlfg_Zg&t=7s  <<

LINKS with further detail on some of the above:

George Huba website  >>  https://hubaisms.com/  <<

Terrors & Dreams >> https://truthfulkindness.com/2016/01/19/impact-terrors-dreams/ <<

Video Demo of Nevel Harp >>  https://www.youtube.com/watch?v=aub51qOyGtQ  <<

Service Dog issues >>  https://truthfulkindness.com/service-dog-issues/  <<

* 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. With the new terminology, 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 2017-08/13. Tags are alzheimers, dementia, strategy, Dementia Action Alliance.

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TLK Strategies 2017Speech Intro

Tru here.  This is transcript for the short 2-min intro for my speech on Person-Centered Compensation Strategies.
Dementia Action Alliance 2017 conference in Atlanta GA on 2017-Jul 27.
Intro:
* Qualifications.
* Compensation strategy is TEMPORARY work-around.
* Transcript & video will be available.
* DAA white-paper on “Living with Dementia: Changing the Status Quo”.

 

Transcript for Introduction:

“”Thank you for the introduction Kirsten,
and thank you DAA for giving persons with dementia speaking opportunities.
So why should i speak on person-centered strategies ?

Since my physical dys-abilities began at 18yo,
I had more than 20yrs to analyze compensatory strategies
and put that perspective as priority
before my cognitive dys-abilities began …at 41yo.

Now I’ve had 17 more yrs, to analyze work-arounds for progressing cognitive dys-abilities.

A compensation strategy, or “work-around” is by nature usually a temporary fix,
and that’s very VERY true of life with dementia symptoms.
The strategy that worked last month may not work this month
due to progression of symptoms, or,
with Lewy Body Dementia it may not work an hour from now,
because of the wild fluctuation of symptoms.
So be flexible.

 

 

Trying to cover lots of material.
We’re recording this, and a transcript will be on my blog.
So I’ll quickly touch on as many strategies as I have time for,
then take a few questions  … on the topic of
Person-Centered Strategies.

Have you seen the DAA white-paper on
Living with Dementia: Changing the Status Quo” ?
I think the most useful strategies are person-centered, meaning …

Even with the same type of dementia,
due to our history and composition,
each one has WIDE differences from others.
Those differences change which strategies work for each of us,
and how long they’ll work.
So clockwise …””

    *     *     *

Link for this section is now available on YouTube at >> https://www.youtube.com/watch?v=v-yhdrwNNkU&index=1&list=PL2E2lPBsUeBigMbOdZSWBRZzPmR711zWM <<

Beginning with Psychological Dys-Abilities, Abilities, and Strategies, i will give transcript of remaining sections of speech in coming weeks, … but if you just cannot wait, the entire session (over 1hr including both Laurie’s and my presentations) is now on YouTube at >> https://www.youtube.com/watch?v=nZTCAlfg_Zg&t=7s  <<

DETAIL:

Work-Around Merriam-Webster says a work-around is “a plan or method to circumvent a problem …“.  Wiki indicates “A workaround is typically a temporary fix that implies that a genuine solution to the problem is needed. But workarounds are frequently as creative as true solutions, involving outside the box thinking in their creation.  Typically they are considered brittle in that they will not respond well to further pressure from a system beyond the original design.”  Unfortunately no “fix” is in sight for any of the varieties of dementia.  And, due to the progressive nature of dementia, symptoms progress and each work-around is temporary because it will eventually no longer go around the problem.  But each successful work-around can extend our abilities for an unknown amount of time — just as most known medications for dementia.

Person-Centered:

Each person is made up of much more than medical history and medical perspectives, as illustrated by the cover chosen for the DAA white-paper on “Living with Dementia: Changing the Status Quo”(white papter is free online at the “Resources” tab on DAA’s webspace >> http://daanow.org/)

(Here i modified the cover to illustrate this “TOOLS” application.)

A person-­centered approach embraces a holistic bio-­‐psycho-­‐social-­‐spiritual model of care.  A person-­centered approach considers what is most important to the person, including his or her goals and preferences and seeks to actively promote well-­being.  (pg 14/ “Living with Dementia: Changing the Status Quo” by DAA)

 

Strategies are not ‘one size fits all’ !  Any specific strategy that works well with my own psychological, spiritual, social and biological history/perspectives may work well for someone else  — and then again it might not work at all.  So each person or care TEAM needs to look at individual strategy options with that specific person in mind — holistically.

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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. With the new terminology, 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 2017-07/25. Tags are alzheimers, dementia, strategy, Dementia Action Alliance.

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DM Vid4 Restaurant Staff

Tru here.

Just finished contributing on Dementia Mentors’ teaching video for staff of restaurants seeking “Purple Table Reservations” training, so thought i would post my notes here also.  More info on what those terms mean is available at Links at end of this blog entry.  These first notes are in order of priority, also listing the related symptom (Sx).

Sx= problems with sensory information-processing & audio discrimination:  Need quieter area.  For many of us there is no such thing as background noise (not only music and voices, but clatter of dishes or machinery).  For most of my friends and i, this is the most frequent reason we would rather stay home than go to a restaurant.  Sometimes we can bring ear-plugs, but that also impairs our ability to communicate with others at the table.

Sx= problems with information-processing: Takes longer for us to process what is said, so … Wait-staff please talk slower and use extra patience (especially with our decision-making).

Sx= fine-motor skills & tremors: Extra napkins at the table, because i am messy.

Sx= fine-motor skills & tremors: Plate with lip on outer edge helps corral food so that it doesn’t end up all over tablecloth.  (Even in early stage, i already mostly use shallow bowls.  My bowls are not plastic children’s bowls, but quality Mikasa dishware; these are heavy enough to stay down on table, even if my silverware knocks on edge of plate.)

Sx= large-motors skills:  Table placement:  Like some of my friends, i need either a Service-Dog for balance-assist, a walker, or a wheelchair.  Many times the restaurant tables are so close together that it is difficult to get to my table with a larger walker like mine.  If i am feeling stable enough to use Service Dog for balance instead, there is often a problem with the table legs.  Many tables these days have a heavily ridged four-pronged base under the table (instead of legs at edges of table).  These huge table-bases leave no room for my Service-dog to lay under the table, so he must lay very near the walkway, creating possibilities of wait-staff or other customers tripping on him.  This problem is not mentioned in the link, but many restaurants need basic education on Service Dog issues so please see ADA Business Brief for Service Animals in Links below.

Separate menu if requested (perhaps mostly selection that would be on “Senior Menu”)

  • Avoid Choice Over-abundance (Sx= problems with decision-making):  An example would be for those who order coffee or decaf, supply cream and sweeteners on table instead of asking.  Perhaps simplify side-dishes to diabetes-friendly (lower-carb choice like maybe berries or veg-sticks), standard (often bread, potato, rice, or corn-based) or other special health need.
  • Bite-Sized (Sx= problems with fine-motor stability & tremors): Some restaurants have a cubed steak that is already cut up and served with gravy, so no embarrassment of someone cutting your food as if you are a child … and if it is a day that i can successfully stab a pre-cut piece of meat, that can successfully avoid food all over my clothes and the floor.
  • Finger-Food (Sx= problems with fine-motor stability & tremors):  For those of us with bad tremors, provide plenty of finger-food choices other than sandwiches that fall apart.  If hamburgers have too many layers then foods end up all over everything almost as bad as trying to use silverware, but grilled cheese will stay together when you pick it up, as will quiche or quesadilla.  You can even add a few chunks of chicken breast without it falling apart.  For breakfast, other finger foods you might offer could be breakfast bar made with muesli, turkey bacon, chicken sausage, or even french toast sticks with thick syrup dip (for those who can manage blood sugar spike).  Pizza slice, cheese sticks, vegetable sticks for dipping, chicken tenders with gravy dip, meatballs, mozzarella sticks, fish sticks, shrimp, and kabobs (skewers) are nice for lunch or dinner.  i absolutely LOVE fondue !!  For desert a fruit bowl or rich bread, with yogurt or pudding for dipping might be nice.  These could provide nice closure without too much of a blood sugar spike.  If blood sugar is not a problem then a mini fruit muffin would be wonderful
  • Graphics (Sx= problems with information-processing):  Even at this early stage, i often do not understand or remember what is meant by the terms “hash browns”, “french fries”, and other words that do not have a specific meat or vegetable included in the name.  So now i often need PICTURES for side-dish options.
  • Graphics (Sx= problems with information-processing):  Smaller selection on each page of special menu, but pictures for each option with flags on pictures showing spicy, etc.  But be aware that visual processing can sometimes be retained longer for some persons with dementia (like me), but others may have mostly lost visual processing and retain more audio processing (which is almost completely gone for me).  My friend may need someone TELLING her the options in order to process the information.  Both of us will process it best if we can see the visual while we also hear the information — two sensory sections of impaired brain working on the same information simultaneously doubles the likelihood of processing.

So best scenario would be telling while also pointing out the various menu options.

Later-stage suggestions (i don’t need these YET):

  • Color contrast table/plates (due to Sx/ loss in depth perception).
  • May need to steam vegetable sticks (due to Sx/ dental issues).

As mentioned in the Journal of Dementia Care,  “Many cultures provide examples of finger foods which could be adapted for older people: antipasto from Italy features a range of meats and vegetables, as does yum cha (or diӑn xin) from China. Meze – finger foods common to the Mediterranean, Balkans and parts of the Middle East are often moist and combine grains, dairy (yoghurt and cheeses), meat and vegetables.”

Links:

ADA Business Brief at https://www.ada.gov/archive/svcanimb.htm ,
https://www.purpletables.com/  ,
http://news.wgbh.org/2017/06/06/local-news/purple-tables-make-dining-out-easier-families-dealing-alzheimers-and-other ,
http://journalofdementiacare.com/dementia_finger_foods_menu/  ,
http://www.philly.com/philly/health/health-news/the-latest-trend-in-dementia-dining-healthy-finger-food-20170604.html  .

 

* 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. With the new terminology, 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 2017-07/18. Tags are alzheimers, dementia, dining, restaurant.

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First DAA Conference in USA 2017

Tru here.

i have been VIRTUAL friends with many dementia folks for years.  After 2yrs, i met a few at the huge 2015 ADI Conference in Australia, so i realized that this time i needed to be better prepared for the tremendous excitement of actually meeting others in person.  i needed to prepare for adding the personal connection of touch to our friendship (and the cost of that excitement on my own energy reserves).  Because i am strong introvert, all these interactions are tremendously outrageously intense and important – but also each interaction COSTS me energy instead of giving me energy.

So this time i was ready for the personal friendship excitement.  I allowed plenty of personal introvert time before, during, and after the conference.  What totally overwhelmed me at the first Dementia Action Alliance conference in USA was the response from persons who were not themselves living with dementia symptoms.

In this first small conference i think we had 15 speakers with some type of dementia.  The opening and closing Plenary presentations were panels of persons with dementia.  Laurie Scherrer and i both spoke on use of Compensation Strategies  — another area where our lived experience gives us unique expertise.  The entire conference contained other experts, but highlighted expertise from various aspects of lived experience.  Just like each of us is still brilliant, but we are brilliant in alternate ways — the education we offered was not the standard fare usually offered by doctors, scientists and other professions.

i was gifted in several areas, and now most of those abilities are gone.  But i am still gifted, only in different ways.  Now i am gifted in devising Compensation Strategies and networking with persons with dementia then sharing those projects.  i think i was good at it before, but as my verbal abilities fail i suspect i am becoming even more gifted in communicating with facial and body language.  (Maybe that can compensate somewhat for the growing need to look at my notes more due to added memory problems every year, so having progressively less eye contact during public speech.)

We have alternative expertise from our lived experience.
By the closing Town Hall discussion, the people WITHOUT dementia were surprised at how helpful it was to hear directly from the experience of persons living with dementia. 

Suggestions were overflowing, from how to arrange help for presentation proposals, to methods for financing travel by Persons With Dementia for speaking opportunities.  Collectively, the response was tremendously exciting, and individually i was told how my words will have helped many many persons in large facilities in Georgia and nearby states, given suggestions for how facilities could maybe use the many data links i have been collecting from projects by other persons with dementia symptoms, and contacted about speaking in the future.  to the folks who contacted me individually for speaking, we (husband and i) suggested they contact DAA about forming a speakers group, and instead helping multiple persons speak.  It appears that is exactly what may happen with the possibility of a DAA Speaker’s Bureau.  Like some of my friends, i have been writing, and sharing material others have written for more than 4yrs.  But many times we feel like we must be mostly  “preaching to the choir” and achieving nothing but our own cognitive exercise.  Sometimes the purpose or mission seems futile, as far as having folks without dementia thirsty to hear and APPLY the expertise of lived dementia experience  — to their personal or professional interactions with persons with dementia, etc.

But by that closing Town Hall, i felt invigorated by how much we were able to help during this conference, and the future possibilities of others ready to invest in helping Persons With Dementia help others multiply this learning. 

Horay !  it is happening, so prepare for mobilization and dissemination; in other words, the scattering of seeds !!

* 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. With the new terminology, 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 2017-07/09. Tags are advocacy, alzheimers, conference, DAA, dementia, Dementia Action Alliance.

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Hallucinations and Forgetting

Tru here.  For 50 years, my senses gave me accurate indications of my environment.  They were very helpful tools.

Then sound hallucinations began almost ten years ago.  Slowly smell and sight hallucinations were added as symptoms during next five or six years.  But until May 2017, i always remembered the possibility that what i was experiencing may possibly be hallucination — so not really as much cause for concern.

Newest development is that i forget hallucinations are a potential problem for me.  Therefore, whatever sensory experience i am having … is totally REAL.  Before, even knowing it was probably an hallucination did not change reality of event.  It is not like sitting in a movie theatre watching an experience.  It is the experience itself.  But this new change is huge.

Beginning last week, with sight hallucination of big bugs on floor, then this morning with 3 hours of smell hallucinations, i did not remember possibility that these experiences could be hallucinations.

Didn’t remember i had any cognitive problems at all.

Husband needed to remind me.  … After he checked the house, he suggested it might be an hallucination.

ugggh !!  Of course; how could i forget THAT ?

I am beginning to have times that i do not remember the need for cognitive strategies
— because 
i do not remember that i have any dementia symptoms. 

This is a huge change in perspective, and change in strategies that will be successful.
Also, if i don’t remember i have dementia symptoms.
then there is no need to share that lived experience for education of others.
Not tomorrow or next month, hopefully not even this year …

… but this marks the beginning of the end for my blog.

That window has begun to close.  So, continuing that thought, what can i do NOW to maximize usefulness of my own blog, and the blogs of my friends, for when i am no longer aware of the dementia issues?  When it is no longer my own responsibility ?  What can i put in place NOW, for continued public access after i am no longer able to advocate ?

any ideas ??

* 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. With the new terminology, 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 2017-06/01.  Tags are dementia, awareness, hallucinations, memory, advocacy.

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Walking in Tar Pit

Journal/Mobility Symptom:

Tru here.  Confusion and disorientation started out like heavy fog, making it difficult to see road signs.  That is about the time I lost my job (in 2000).  Then the cognitive fog got so dense that could not see road at all, in order to make sure driving on roadway.  Then about five years ago the mist became so thick that I needed to paddle in order to stay afloat.

Now instead of paddling in water, during the past few weeks it has felt more like a tar pit, constantly pulling my energy and making every movement extra difficult; not only mental but also physical movements.  Now needing assistance to move within the house, as well as walking outside of house.  Need service dog or walker to get to bathroom or my bed, or the desk.  Need nap every day now.  Fell badly.  Husband says it was about a week ago but i do not remember falling.

I remember my thumb was bright purple, but confused that still no sensations in the tip of it, and wrenched my knee.  With the extra time consumed from even MORE cognitive work-arounds that are needed lately, husband frustrated with so much of the only time i have left going to advocacy issues.

And unable to meet all my obligations lately, so gonna need to cut back further on what obligations i make.

Feel like i am letting everyone down, inside and out of the family.

Don’t feel like i am drowning yet  … just constant and unrelenting pull of mental and physical symptoms, dragging me down.  So gotta decrease expectations, increase strategies and put all aspects of life further into compound low gear.  ((I thought i was already in lowest gear, but maybe i can get some of my environment into lowest gear also, LOL)).

 

Thank you to those who have sent encouragement and positive wishes.  They are appreciated.  😀  — Tru


* 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. With the new terminology, my current diagnosis is 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 2017-05/29.  Photo >>  http://i1.ytimg.com/vi/O3ZvHlNB4hw/hqdefault.jpg.  Tags are dementia, mobility, tar pit, relationships.

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EMT 4PWD communication

“About us — without us” feels like manipulation.

Professionals (especially medical professionals) need E.M.T.
… for direct interaction with Persons With Dementia:

E= education/skills;

M= motivation/understanding;

T= time.

.

.

Tru here.  My first neurologist was splendid … but then retired.  The next year, the second neurologist gave me conclusions but not raw scores after i took their neuro-psych.  I suspect they thought withholding scores would force me to their office for all further visits, in order to provide comparison over time  — WRONG!  Never returned so went without comparison.  Took two years but found another neurologist.  Traveled 3.5hrs each way to get to him.  Quit my third neurology specialist on the second visit.  i gave him two visits because he would not slow down to talk WITH me on first visit.  But twice during second visit, i asked him to speak slower and pause between change of subject so that i could catch up with his thoughts.  Instead, he gave up on me, turned to my husband and spoke only with him for remainder of appointment.  So i fired his behind !  Took a year to find another specialist.  He is a jewel; communicates directly and openly, showing me respect and treating me as a partner in my own care.

Much of our interactions with doctors and professionals leave persons with dementia feeling left out from our own care team.  Without DIRECT communication, we are not allowed to be a partner, which does not build our cooperation in the process.
Many of my friends are no longer willing to see the doctor.  Why should we, if the doctor will not interact directly with the patient?

E.M.T.

E= Education for direct communication involves direct contact with Persons With Dementia during education process; with their first-person feelings and experiences …
in order to build communication skills that successfully work around cognitive and sensory dementia symptoms.  See links at bottom of page.

M= Motivation builds understanding for WHY professional should show respect for our humanity and make us a partner in our own care, by interacting directly with Person With Dementia.

T= Making TIME available for direct communication.  Professional might ask person to arrive early if they would like, and supply paper and pen to write down most pressing concerns they wish to share.  That gives extra time for person to find the words, because extra time is almost always required to work around dementia symptoms.  Another example might be to try using visuals when words don’t work.  My husband uses visuals for any numerical concept, geographical or distance concept, and descriptions.

 

There are wonderful exceptions.  My General Practitioner is a wonderful exception.  But searched for neurology specialist quite a while before i found someone willing to be completely open on subject, and speak directly with me.  This is too important of a specialty to settle for second-hand communication !

Reviewed lots of dementia research paperwork past few days for Dementia Action Alliance project on subject of “care”, and what hit me was that it felt like the research was entirely “about us — without us”, by medical professionals.  Felt like persons with dementia were merely THINGS; subjects of study; no longer considered valuable thinking feeling beings … but merely objects !  Researchers were the valuable stakeholders, but patient was not valued at all  — and not considered a stakeholder at all, so no “care” (or consideration) was shown to make them a partner in care.  Made me angry, and my primary response to anger or grief is writing.  So i wrote, and this is what came out.

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LINKS:

ECT Suggestions >> https://truthfulkindness.com/2014/12/12/suggestions-understand-audio-communication-dementia-symptoms/

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

 

 

Category: Important/Communication: https://truthfulkindness.com/category/important/communication-important/

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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. With the new terminology my current diagnosis is Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2017-05/22. Tags are dementia, communication, professionals, research, and partnership.

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Teaser from speech on Person-Centered Compensatory Strategies

Teaser excerpt from my planned “Person-Centered Compensatory Strategies” speech;

Tru here.  One method for predicting helpful strategies
is capitalizing on the thinking processes which work best
— and minimizing reliance on those that work least, so …

… for this slide we used just one category of my Neuro-Psych scores, compared over time — math.
I was in gifted math during grade school, Business Student of the Year in High School, and worked in Accounting.
So my math started out very high.

Even after i lost my job from what was probably my first small stroke, arithmetic was still at 75th percentile.
That means my math was still better than 75% of others with 2yrs college.
But as you can see it’s now dropped to 5th percentile.

Ugggh!!  Numbers, numbers, numbers!
I no longer understand numerical concepts over about ten.
Numbers 75 and 57 sound like the same amount to me,
and the numerals look like the same amount.

But remember my visual processing is still extremely high, and abstract thought is still high?
So the work-around is this;

Husband makes a pie chart, graph, or picture for the numerical concept.
Then we still have communication.

 

Example:
I was feeling neuro-psych testing was a waste.
So husband put together a graph for each score, with comparison thru time.

When i looked at all those graph pages with decreasing bars of color on them,
then i could see that neuro-psych testing was truly reflecting my cognitive loss
… so maybe it was not a waste of time.

 

You might consider how Neuro-Psych scores could help YOU tailor strategies
… at least until conditions change again.

George Huba is a person with Fronto-Temporal Dementia who has a PhD in Psychology.  His communication and scheduling ideas capitalize on visual processing.  Check out some of his blog entries at https://hubaisms.com/

 

You won’t want to miss this important dementia conference and interactive technology showcase for June in Atlanta!  Dementia Action Alliance conference info is at >> http://daanow.org/north-american-dementia-conference-technology-showcase/

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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. With the new terminology my current diagnosis is Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2017-05/15.  Tags are dementia, strategy, Dementia Action Alliance, conference, numbers.

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