Symptom Flare

Tru

Dontknow why symptoms are so much worse right now, but i do know that i am not the only one.  With Fibromyalgia, we would call it a “flare” — consecutive periods of time when abilities are dramatically lower becaus symptoms are dramatically intensified.  Dont know what to call it with dementia symptoms.

it seems like lately a number of my friends and i have just been extra ragged.  More exhausted.  Not just me, but also friends in Europe.  So truly no ideas on why … just know it IS.

So … symptoms are more intense, time frame for doing our “normal” tasks is even longer than usual, more likely to get extra frustrated on every little thing — because our abilities are lower than usual.

Walking and other movement less successful so more stressful.

Dropping more items that break.  Since i  cannot remember what is inside kitchen cabinets we removed doors, so that means MUCH more time in clean-up time when glass breaks.

Less successful in getting food/drinks all the way to my mouth.  Right now, wearing clothes guarantees those clothes will have food on them before end of day.

Less understanding of movies and reading.  Confident it will pick back up, so i am juist leaving them along for now.  if i was not using so much EXTRA time repairing my added mistakes on the other stuff, would spend some time doodling with colored pencils, crochet, or music.

For me, MUCH more challenge with audio communication right now.  (But then audio section of my brain was one of the first sections for dementia symptoms.)  Spent a good portion of my most recent Dementia Mentors’ chats just watching, because could not understand a word of what was said.  Could still see body language tho  ((smile)).  Still appreciate being part of the “family” — even tho cannot understand what they are saying.

much more audio hallucinations lately.

Looking back, see that wrote about intensified symptoms during May of LAST year also.  In fact i see that i fell badly and lost sensations in left thumb last May.  Sensation never returned. Also iPhone STILL will not respond to “touch” movement with that thumb.

Emotionally, i am much more fragile right now.  Frequently feel like crying — probably frustration.

My iPhone makes sounds & no idea why because cannot find any cause.  Are they hallucinations ?? — no idea !!

Either the smoke alarm was going off this morning — or it was more audio hallucinations.  No idea. but i ran around the house checking everyhting i could think of.  Did not find anything on.  Unfortunately i had hallucinations of that hot acrid burning smell numerous times every hour for 3 years — so suspect i lost the smell sensor to smell real smoke.  Then sound of large animal moving things around on porch — but dogs show that actually there is nothing on porch.  ugggh !!!  Now smoke alarm going off again .  I think i will put in ear plugs, cover up0, and go take a nap.

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That is Life.

So what do i do about it ??

Have someone check the fire precautionary devices.  (Relax about nomenclature; work-around the noun with verbs for what the item does.  Work-around the names, with how the person is associated with yourself. etc)

Gear down to COMPOUND Low in everything.  Compound Low is very low “crawling” gear — for pulling heavy loads (like my cognitive abilities right now, LOL).

Top priority = eat, drink, & relationship with family/pets and Creator.  Cannot handle much more than that right now

Right now, i have stopped trying to read all my FaceBook notifications from friends with dementia (>150/day).

Continue attending video chat, even if i do not understand what folks are saying.

Extra Naps (but not past noon — to not interfere with sleep pattern)

Take out my “Future Creativity Box” this week-end (that i keep for when abilities are at Lowest Levels).

Get comfortable, then give self permission to have a good cry.  … and find the things that i still have ability to do.

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Husband care-partner has these suggestions:

nice long bath

take a walk and enjoy thi wonderful world

watch sunset and/or sunrise

play music

… and i can do this because my husband will take dog to training, and i will re-allocate my own dog-training time for quiet time on my own.

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And gonna go ahead and post this now instead of working on it further during week-end.  That way it is not pulling on my mind.  So even tho this is posted early and probably a bit scrambled, it is my “Truthful Tuesday” entry.

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Related Links.
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Kitchen >> https://truthfulkindness.com/2014/09/09/distorted-decision-making-in-kitchen/

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Last Yr, Tar Pit >> https://truthfulkindness.com/2017/05/29/walking-tar-pit/


* 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”.  Copyright © 2018-05/18. Tags are: dementia, flare, PLwD, strategy, symptom.

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Suggestions4 Restless Legs

Tru here.

Been asked for suggestions re restless legs as Lewy Body Dementia symptom.  So posting this in addition to preparing my usual “Truthful Tuesday” entry.

Symptom of Restless Legs is something i know well.

Had problem since young age, as symptomof FibroMyalgia which i inherited.

Check for side-effect of new medication  (mine was extremely intensified by Aricept/Donepezil until i tried cutting dosage to take half in morning then half at night.  Almost completely dissolved as side effect after i was able to handle entire dosage in morning, instead of at night)

Check levels for abnormal levels of nutrients like iron & magnesium.  Sometimes changed meds or other changes can consume more of those, on a regular basis, than what is “normal”.

Make sure there is nothing to impair movement during sleep; no dogs, pillows, etc, blocking movement.  Otherwise almost certain to wake repeatedly during the night (IF you are able to return to sleep, LOL)

bare legs or silky leggings — again nothing that impairs movement against sheets etc

heat bags from microwave sometimes help diringthe falling-asleep process and short time afterward.

 

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Best practices for sleep  >> https://truthfulkindness.com/2016/03/23/sleep-problems-again/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © 2018-05/18. Tags are: dementia, lewy body, PLwD, restless legs, strategy, symptom.

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Recent Pages Added 2018May part 1

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Pages recently added to my blogsite are from:

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Wally Cox; WaterColor Class 2016  >> https://truthfulkindness.com/index-persons-with-dementia-pwd/wally-cox/watercolor-2016/

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Tommy Dunne; Gardens & Dementia >>  https://truthfulkindness.com/index-persons-with-dementia-pwd/tommy-dunne/gardens/

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Harry Urban; April Laughter >> https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/april-laughter/

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Non-dementia personal memoir page added to Bits n Pieces; Mother’s Day for Connie >> https://truthfulkindness.com/bnp/part-3/mother-connie/

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

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © 2018-05/14. Tags are: dementia, persons with dementia, PLwD.

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Blog Difficulties

Tru here.

I know i skipped “Truthful Tuesday” this week, despite being here at the house, intensively working on blog the prior week and since Sunday morning.  Realizing that even if i worked thru the night there is no way i could finish until later in the week, so … At 10pm Monday night i just gave up.  This is NOT a regular blog entry — i am still working on the pages i am trying to share, but more a short explanation.

Been working on blog pages for others.  Last year i kept track of my work time spent on posting pages for others, and it averaged 2hrs per page, even a simple copy/paste, find graphic from their FB photos, & get their approval for how it was put together.  This year is tremendously higher.  Cannot put my finger on the added problems, but in past few months it takes me way longer to do stuff — just generally.

Sleep complications have intensified again, which may be part of cause.

Also have started another blog entry on communication.  Marital/partner communication has also dropped a step in abilities ladder.  ugggh!!

Life goes on, but not being as successful at analyzing and problem-solving for work-arounds these days.

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i am still working on it.
Havent given up, so dont give up on this blogsite either.  ((smile))

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Related Links
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Time consumption >> https://truthfulkindness.com/2015/07/20/time-energy-consumption-dementia-symptoms/
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Sleep complications >> https://truthfulkindness.com/2016/01/19/impact-terrors-dreams/
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Clarified priorities >> https://truthfulkindness.com/2018/04/23/apathy-priorities/

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © 2018 May 09. Tags are: advocacy, blog, dementia, PLwD, symptom.

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to Neurologists and other Specialists

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Tru here.
Returned home Thursday from 2018 American Academy of Neurology annual meeting.  Above film was our Dementia Action Alliance video entry for the 2018 Neuro Film Festival, now shared at  https://youtu.be/kTPTCPaWD6M

Unfortunately was not able to be part of presentation panel, but my friends Robert Bowles, Laurie Scherrer, Brian LeBlanc, and Mr & Mrs Driver did a wonderful job.  Spending time with them, and my friend Danny Potts, made for some very special days.

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This was in case i had the opportunity for briefly speaking to neurologists at the meeting:

DO avoid “prescribed disengagement”
(great term Kate Swaffer came up with)
through ENABLEMENT:

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A. DO … BUILD  TRUST through direct communication.
Care partner is important in big picture, but I am your patient.
Learn communication strategies from persons living with dementia (because in this case we are the experts).
Each person is different, but for me and many others, primary strategies are:
1) … take the extra time to speak slower.  I admit there are some concepts i have lost the ability to grasp, but mostly i am still brilliant … it just takes me considerably longer to get there (with use of strategies not only on my own part, but also for other persons in conversation).
2) … Changing train of thought takes extra time for me, so also pause between thoughts, so that I can change channels and keep up.
3) … Communicate with words, body language and/or graphics.
4) … Meet my eyes and speak directly with me.
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B.  DO … ENCOURAGE Patient to LIVE life after diagnosis.
1) PEER  GROUPS:  supply ideas for persons living with dementia peer groups. Even if no local peer groups available for more rural areas, there are online groups such as Dementia Mentors and Dementia Alliance International. Both have either weekly or daily video chat available.  This not only provides when no local peer groups, but alows for peer interaction without the debilitating noise and busy-ness of multiple bodies in one area.  These groups also have other online tools such as written and video ideas for strategies, given in first person voice of those living with dementia.  Multiple texting groups available thru FaceBook, some of which are only persons living with dementia symptoms.  In this case we are the experts, so give us the chance to extend LIFE-Support.
2) NON-PHARM along with pharmacological ideas for management of grief, added stress, and whichever combination of dementia symptoms patient might encounter on this path.
3) REASONABLE  ACCOMODATION ideas for those who are still able to work.  But be aware that most employees with dementia are unable to retain time for peer, family, and self-relationships to remain emotionally healthy while dealing with the added emotional strain from grief and dementia symptoms.  Strategies to deal with dementia symptoms consume much extra time, which must come from somewhere.

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Related Links:
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Conversation Tips >> https://truthfulkindness.com/2014/12/12/suggestions-understand-audio-communication-dementia-symptoms/

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Kate Swaffer’s blog on topic of “Prescribed Disengagement” >> https://kateswaffer.com/2014/01/20/re-investing-in-life-after-a-diagnosis-of-dementia/

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Suggested in pkg at Dx >> https://truthfulkindness.com/2018/02/19/still-my-life/

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

Dementia Alliance International >> https://www.dementiaallianceinternational.org/

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

Top recommended PLwD blogs, websites, & groups >> https://truthfulkindness.com/links/plwd-blog-2018-rec/

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © 2018-04/30. Tags are: communication, dementia, neurology, PLwD, strategy, symptom.

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Apathy ?? or Clarified Priorities ?

Tru here.

Some of my friends are experiencing what they are concerned is “apathy”
regarding current violence in the world.

Others are in a frenzy of panic-mode.

For me, I know that my circle of influence is small enough that
I do not have ability to make positive change for that sort of disaster … in the time I have left.
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It is not that I do not “care”
— it is simply that i no longer consider it my responsibility to invest in it.
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I have invested plenty of time and energy to emotionally process the violence in my own life.
Psychiatrist agrees that I have processed past trauma in healthy ways.
 .
For me personally,
part of processing and accepting my current trauma of dementia symptoms is that
mostly I avoid investing in violence (even emotionally, by reading, watching movies/news, etc)
— unless I have power
to change some aspect of the future
THRU that investment.
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Just like each adult, I need to choose priorities
for my investments of time and energy.
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My hope of change
is in the documentation of lived experience
for dementia symptoms;
my own and those of my friends.
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My hope is that some day in the future
these stories of lived experience
will be valued enough to make a difference in the larger perspective.
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So I write,
.
I collect what others write,
 .
… and I categorize for the future.
 2018 Top Blog Recommendations >> >> https://truthfulkindness.com/links/plwd-blog-2018-rec/
 .
Maybe , for YOU also,
you will discover that …
 .
It is not apathy
— it is clarified priorities for time investment.
Related posts:

* 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 © 2018Apr16. Tags are: apathy, dementia, PLwD, priorities, symptom.

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Recent Pages Added April part1

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.

Pages recently added to my blogsite are from:

Cathy Carvalho Mazzie “Don’t Act Horrified” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/cathy-mazzie/dont-horrified/

Jennifer “Nocturnal Hallucinations” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/nocturnal-hallucinations/

Peter Berry #38 Easy Things More Difficult >> https://truthfulkindness.com/index-persons-with-dementia-pwd/peter-berry/38-easy-2-difficult/

Valerie Blumenthal “Hello It’s Me” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/valerie-blumenthal/hello-its-me/

2018 Top Recommended PLwD Blogs, Websites, n Groups >> https://truthfulkindness.com/links/plwd-blog-2018-rec/

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

* 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 © 2018Apr16. Tags are: blog, dementia, persons with dementia, PLwD.

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Bad Day Indicators and Suggestions

Tru here.

For me (and i am the only one i can really speak for)
additional Eyesight or Hearing problems can be an indicator for other functions of my brain.
The other primary predictor can be my balance.
If my perceptional senses or balance are less than my usual “normal”,
then i re-consider priorities for that day.

If i have spent more time correcting mistakes … than time on “productive” tasks, during first few hours of the day,
then i re-consider priorities for remainder of the day.

On those days must put ALL functions in compound Low — maybe even several days in a row.
Allow extra time for all tasks.

… And these are appropriate days to procrastinate.
Postpone the Lower-priority tasks to enable success on the high priority tasks …

or instead, if symptoms are severe enough,
i might postpone the purpose-driven tasks (such as dementia advocacy) and devote the day to meditation-type tasks.
Artistic endeavors that are in my “Future” craft box for days when my abilities are Lower-Level.
See “Crafting Tips” entry >> https://truthfulkindness.com/2018/03/05/crafting-tips-memory/ .

If must stay in compound Low more than a few days in a row, then i consider doctor visit to check-out non-dementia issues.  

and re-evaluation of time/energy priorities
— because perhaps my “normal” abilities just dropped a step.

***

Suspect during past months my own abilities have dropped another step of the Ladder.

Several folks have mentioned concern, so i now need to begin re-evaluation process.

Grieve – accept new dys-Abilities – find new work-arounds (if possible) for highest priorities of my purpose in Life, and also new ways to continue doing the enjoyable things in life.
May need to consider further revisions in  various types of communication , in order to continue crucial relationships at best level possible…. But that is another entry, LOL.

. Graphic was created with pictures of canes made by my Uncle, and another.  I had a pet goose when he made the two on the Left.

Related Links:

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Grieve to Accept Dx & Find Purpose: https://truthfulkindness.com/2017/04/21/pwd-grieve2accept-dx-purpose/;

Bad DaySuggestions: https://truthfulkindness.com/index-persons-with-dementia-pwd/myrna-norman/bad-day-suggestions/;

Where Am I: https://truthfulkindness.com/2016/05/08/first-time-of-where-am-i/

Melancholy Day: https://truthfulkindness.com/2014/11/10/melancholy-day/;

Clarity of Thought: https://truthfulkindness.com/2014/09/29/my-thoughts/

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © 2018 April 09. Tags are: dementia, PLwD, priorities, strategy, symptom.

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Recent Pages added 2018 March part2

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.

Pages recently added to my blogsite are from:

Anonymous “Over-Stimulation” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/anonymous/over-stimulation/

Harry Urban “Adjusting to Change” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/adjusting-to-change/

Jean Lyon “March Thoughts” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jean-lyon/2018mar/

Jennifer Bute “Hallucination Leaping Like a Young Goat” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/hallucination-goat/

Valerie Blumenthal “Perceive Differently Now” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/valerie-blumenthal/perceive-differently/

.

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

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © 2018-04/01. Tags are: dementia, persons with dementia, PLwD.

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Sensor4 Body Odor

Tru here.

Sometimes i hear complaints from members of families, that their loved one is not taking proper care of self.  Well …

Recently discovered that i have lost the smell sensor for body odor
(not completely a bad thing, if in public much, LOL).
But when combined with memory problems, can cause complications with self-care.

Strategies:

Now, when i go to bed, on my pillow i see 5×7 pictures reminding me to set out deodorant & teeth supplies, set out early-morning meds, put portable phone on charger, & turn on night-Lights. Before i put my head on the pillow i can carry the 5×7 pictures around to keep my tasks in mind, then set the clamped pictures in the top of my sock drawer before i go to bed.  In the morning, when i get my socks, the 5×7 clamped pictures get set on my pillow.

Every person living with dementia symptoms is different in placement of swiss-cheeze holes for mental processing.  For me, visual processing is still best way to process information (such as InfoGraphics).  So picture of placement for deodorant & toothbrush much more likely to get complete understanding than just words on a list.  For someone with low visual processing, another strategy might be better.  This information can be found in neuro-psych scores.

With deodorant and toothbrush out on countertop, i am much less likely to forget to use them.

PS: also lost smell sensor for flatulence but … oh well, LOL  😀

Not first smell sensor lost >> https://truthfulkindness.com/2016/10/28/fragrance-craft-and-my-nose/

 

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © 2018 March 26. Tags are: dementia, hygiene, reminder, symptom, smell, strategy, Truthful Kindness
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