When the Clock Changes but the Body Doesn’t

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Sometimes one hour is not just one hour; Routines are part of the safety architecture of the day.

Tru here. This entry is by Truthful Loving Kindness (my full legal name) for my blog at https://truthfulkindness.com/. If you have comments or questions, please use that website. Writing is harder now. i started using edit help from ChatGPT during Feb2026, which improves readability and reduces the time I spend in the writing process, but retains my writing style. I am still on the free version of this blog, which means more ads which i have no control over. I am working to move to the paid version to avoid advertisements.

This year’s shift to Daylight Saving Time seems to be hitting me harder than usual.

Three mornings in a row I have woken up already feeling slightly off, and only later realized why.

I had missed my early-morning protein drink — the one I rely on to bring my blood sugar back up after the night.

Each time the nausea is what reminds me.

That is my body’s signal that a step in the routine has been skipped.

The difficulty is not just that one step.

The entire day feels scrambled.

My internal clock is not yet ready for sleep when the alarm says it is time to begin the bedtime routine.

… then morning arrives before my body feels finished with the night.

So each part of the day carries a little more pressure. My routines that usually guide the day begin to feel rushed and slightly out of step … then they are a lot out of step.

This experience is not mine alone.

*** As my friend Rick Phelps, who is also living with dementia, writes about time changes, even a one-hour shift can disrupt sleep, increase confusion, and make late-day symptoms like sundowning more likely. The change may seem small on the clock, but it is not small to the brain. (See Link below)

*** And from the teaching of Teepa Snow’s organization, there is a similar reminder: when routines are disrupted, the brain has to work harder to make sense of the day. That extra effort can show up as irritability, fatigue, or distress — not because something is “wrong,” but because the system is under strain. (See Link below)

Living with dementia means that much of daily life depends on carefully built routines.

They are not just habits. They are part of the safety architecture of the day — helping me remember when to eat, when to rest, and when to do the small things that keep my body steady.

When the clock suddenly shifts, those supports wobble for a while until the body and the schedule learn each other again.

Usually the body catches up eventually.

Until then, I try to move a little more slowly and listen carefully to what it is telling me.

Update 14Mar2026: Last night (nearly a week after time change) i finally got a “normal” amount of sleep, and it was at least somewhere near my usual bedtime. So that is encouraging.

Links from Persons Living with Dementia:

Rick Phelps at >> https://www.agingcare.com/articles/daylight-saving-time-can-trigger-sundowning-212605.htm ;

Links from other EXPERTS:

Teepa Snow at >> https://teepasnow.com/blog/dementia-reducing-increased-risk-of-irritability-caused-by-time-changes/ ;

Administrative Notes

I did not track the exact hours invested in this entry. Started this blog entry 2026Mar10 and finished 2026Mar19.

The subscription box now appears at the bottom of each blog entry.

My full legal name is Truthful Loving Kindness.

My current formal diagnosis remains Mild Cognitive Impairment (MCI). However, due to long-term functional losses — including loss of employment and driver’s license — my Primary Care Physician and several other medical professionals consider my condition more consistent with progressive dementia. My symptoms primarily reflect Lewy body and vascular patterns, including REM sleep behavior disorder, hallucinations, and cognitive fluctuation.

Brain imaging (SPECT and PET) has shown significant temporal lobe involvement, creating overlap with logopenic variant Primary Progressive Aphasia (a subtype within the frontotemporal spectrum).

After years of specialist consultations, my family and I chose to discontinue further diagnostic pursuit. Travel distance and emotional cost outweighed potential benefit. My lived experience of neurologic change continues regardless of terminology.

A current working theory for contributing factors includes 33 years of undiagnosed tick-borne illness (Lyme and Babesia), followed by five years of intensive treatment.

Text copyright © Truthful L. Kindness, 19 Mar 2026.
Painting copyright © Truthful L. Kindness, 19 Mar 2026.

You can learn more under the “About Me” tab (which is due for updating).

Comments are welcome. Please filter responses through truthful loving kindness toward all concerned.

Editing assistance: I currently use ChatGPT to improve readability and reduce writing time while retaining my voice and authorship.

This blog operates on a free platform (aside from the domain TruthfulKindness.com), and advertisements are automatically generated. I have no control over which ads appear. I am exploring transition to a paid plan to remove ads.

Categ: Important, Sx, Dementia Symptom Tips. Tags: Time Change, Body Clock, Lewy Body Dementia, Daily Routines, Cognitive Fatigue, Blood Sugar, Living with Dementia, Dementia Strategies, Safety Architecture, Life with Chronic Illness

Attached Picture: This clock picture started with painting i spent 9 days on (2026Mar10-19), then asked Ai to complete it for me, then brought it back over and made finishing touches. Don’t know why this took so many hours, but it was difficult for me. “Retain Routine” picture was finished by me on 2015Nov10 (for use in a previous blog entry).

Reposting Policy:
You are welcome to repost my writing provided that:

  1. My legal name (Truthful Loving Kindness) is clearly credited.
  2. It is clearly stated that the content was not written by you.
  3. A prominent link to my website (http://www.truthfulkindness.com) is included.

If an advertisement appears below this entry, it is platform-generated and not endorsed by me.

Creating is How i Remain

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(Dewey 740 – Art as Load-Bearing Wall). Summary (for orientation):
Dormant does not mean unfinished. This entry explains how art functions as adaptive architecture in my life with dementia.

Tru here. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. Writing is harder. i started using “Grammarly” to edit last month, but it sacrifices my particular writing style, so last week began using edit help from ChatGPT, which improves readability and reduces the time I spend in the writing process, but retains my writing style. I am still on the free version of this blog, which means more ads. I am working to move to the paid version to avoid advertisements.

Recently I was looking at one of my winter tree paintings and at first I felt that familiar tug —
“it isn’t finished.”

The branches were visible.
No leaves.
White space in the center.
Bud-like tips, but no bloom.

For a moment my brain labeled it incomplete.

But then something shifted.

Dormant is not unfinished.

Winter is not failure.

Architecture before abundance is still architecture. 

WintrArchitctr 20260122

740 Winter Architecture

When my dementia symptoms first began, comparison became dangerous territory.

I had once drawn full architectural blueprints.
Submitted an entire set for our ADA Craftsman-style home. 

(See Arts n Crafts Link in bottom section of blog.)

If I compare those drawings to what my hands can do now, I shrink.
If I compare earlier writing to present writing, I hesitate to continue.

Comparison drains life.

Creating restores it.

I have said more than once:

“Creating makes me feel alive.” 

That was true before diagnosis.
It became essential afterward.

Over the years, art has changed form — but not function.

When tremors took my ability to tune my nevel harp, grief poured through my fingers.
Later, digital tools allowed me to stabilize those tremors and continue shaping color in “Harp of my Heart.” 

(See “Harp of my Heart” Link in bottom section of blog.)

The instrument changed.
The medium changed.
The alive-ness did not.

When depth perception made eating messy, crochet collars became strategy. (See “Bib-Collar” Link in bottom section of blog.)


When memory interfered with crafting, I removed cabinet doors and used clear containers. (See “Crafting Tips” Link in bottom section of blog.)

Art is not separate from strategy.
It is adaptive architecture.

Even our cracked concrete kitchen floor became art. 

(See “Floor as Memory Project” Link in bottom section of blog.)

The cracks were dramatic.
Nine years later, we turned them into a family footprint installation.

What could have been flaw became foundation.

That seems to be a recurring theme in my life.

Looking back, I notice something consistent in my art:

Curves dominate.
Swirls and curls.
Straight lines mostly connect the curves. 

Arts n Crafts

Contained perimeters.
Complex interiors.
White space that allows breathing room.

Even my hearts are structured vessels, not sentimental overflow.
Even my trees reveal branches before bloom.

Structure holding through season.

So when I looked again at that winter tree, I stopped asking,
“Is it finished?”

And instead asked,
“What season is it in?”

Dormancy is honest.

Visible branches are honest.

Bud tips without leaves are honest.

In some ways, winter architecture may be the truest form — because you can see the structure clearly.

And perhaps that is what art has become for me:

A load-bearing wall.

Not decoration.

Not hobby.

Not busy-work.

Art is the architectural extension of self when language thins.
It is how I regulate intensity.
How I translate grief into pattern.
How I embed love into material.
How I remain.

Creating is not what I do.

It is how I remain.

Closing Question

Is there something in your life that feels “unfinished” —
that might simply be in its winter season?

What would shift if you viewed it as dormant architecture rather than failure?

— Truthful Loving Kindness

Associated Links on my own Blogsite: (2014-2021)

Arts ‘n Crafts after Dementia Diagnosis – Intro
Harp of my Heart
Bib-Collar as Strategy
Crafting Tips for Memory Symptom
Floor as Family Art MEMORY Project
WintrArchitctr 20260122

Attached Picture:

This painting: Digital painting by me, finished on 22Jan2026, titled “Winter Architecture”. Created in Procreate using the stabilization tool to compensate for tremors. Alcohol ink–style brushes by Alaina Jensen were used to emulate fluid alcohol ink movement with Apple Pencil Pro. Final line work completed using Procreate’s default “Syrup” brush. Created as part of my ongoing work as a person living with Lewy body dementia, where art functions as adaptive architecture. Higher resolution image of painting available at my Flickr portfolio at >> https://www.flickr.com/photos/194191353@N04/ << .

Administrative Notes

I did not track the exact hours invested in this entry. Writing began four days ago, with an additional three days devoted to the artwork.

The subscription box now appears at the bottom of each blog entry.

My full legal name is Truthful Loving Kindness.

My current formal diagnosis remains Mild Cognitive Impairment (MCI). However, due to long-term functional losses — including loss of employment and driver’s license — my Primary Care Physician and several other medical professionals consider my condition more consistent with progressive dementia. My symptoms primarily reflect Lewy body and vascular patterns, including REM sleep behavior disorder, hallucinations, and cognitive fluctuation.

Brain imaging (SPECT and PET) has shown significant temporal lobe involvement, creating overlap with logopenic variant Primary Progressive Aphasia (a subtype within the frontotemporal spectrum).

After years of specialist consultations, my family and I chose to discontinue further diagnostic pursuit. Travel distance and emotional cost outweighed potential benefit. My lived experience of neurologic change continues regardless of terminology.

A current working theory for contributing factors includes 33 years of undiagnosed tick-borne illness (Lyme and Babesia), followed by five years of intensive treatment, along with probable nocturnal seizures.

Text copyright © Truthful L. Kindness, 23 Feb 2026.
Painting copyright © Truthful L. Kindness, 22 Jan 2026.

You can learn more under the “About Me” tab (which is due for updating).

Comments are welcome. Please filter responses through truthful loving kindness toward all concerned.

Editing assistance: I currently use ChatGPT to improve readability and reduce writing time while retaining my voice and authorship.

This blog operates on a free platform (aside from the domain TruthfulKindness.com), and advertisements are automatically generated. I have no control over which ads appear. I am exploring transition to a paid plan to remove ads.

Reposting Policy:
You are welcome to repost my writing provided that:

  1. My legal name (Truthful Loving Kindness) is clearly credited.
  2. It is clearly stated that the content was not written by you.
  3. A prominent link to my website (http://www.truthfulkindness.com) is included.

If an advertisement appears below this entry, it is platform-generated and not endorsed by me.

categ: Arts&Crafts, important, crucial, journal, and symptoms. tags: adaptive art, arts and crafts, assistive technology in art, cognitive fluctuation, digital art with tremor, dormancy, Lewy Body Dementia, living with dementia, resilience through art, structure and identity, winter architecture. Add to Pgs/??. S&S Categ: 1) identity, 2) purpose, 3) hobbies, and 4) hope.

Living with Lewy Body Dementia Symptoms: Understanding REM Sleep Behavior Disorder Dreams 2026a

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Lewy Body Dementia (aka LBD) very frequently carries symptoms of REM Sleep Behavior Disorder (aka RBD) with ultra-vivid dreams that are often extremely negative. It is estimated that up to 75% of individuals with LBD experience symptoms of RBD and carry them at the earliest stages, highlighting its clinical significance. My “Under Siege” painting is about the perceived experience of being under fire, defending myself and others, running, escaping, people dying around me (especially loved ones and furr-family) almost EVERY night for years, often producing feelings of distress, numbing, and despair. The results of these emotions will be a separate blog entry. RBD is a core clinical feature of LBD.

Summary: This entry highlights the connection between Lewy Body Dementia and dreams of REM Sleep Behavior Disorder, including its personal impact and clinical context. The summary covers the prevalence, some of the symptoms, emotional effects, and treatment approaches.

Tru here. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. Writing is harder, so I have now begun to use “Grammarly” to edit. This sacrifices my particular writing style but improves readability and reduces the time I spend in the writing process. I am still on the free version of this blog, which means more ads. I am working to move to the paid version to avoid advertisements.

1am this morning: Exhausted with feelings of battle fatigue. Similar to so many nights in these past 25 years, Last night I got a total of 4 hours of very broken sleep. During those 4 hours, at various times, I was fighting for my life and those of others in mortal combat, surrounded by flames of fire, and responsible for getting a group of children to safety. Husband woke me twice because he could tell I was in distress, then I gave up on trying to sleep at 1 a.m. because I just could not face going back into that ultra-vivid, more real-than-daytime, horrid environment. Smells, sounds, tastes, … all of it adds to the feelings of despair and anger.

As of 12Jan2026, REM Sleep Behavior Disorder (RBD) has now been added to my medical record, but the symptom actually began about 1997, two years before my cognitive decline began. At that time, my husband made me bed rails because I kept waking up on the floor. After we moved and I began taking melatonin, that was not a problem. The ultra-vivid dreams that go with RBD (see reference above), more real than daytime events, have been part of my life ever since then, but the “acting out” aspect of those dreams has not been present. In January, I found out why.

“The (RBD) dreams often involve the perception of being chased or attacked by something or someone.”

NIH pamphlet on Lewy Body Dementia states that “The (RBD) dreams often involve the perception of being chased or attacked by something or someone.” That statement certainly matches my own experience during these past 25 years. Apparently, my medication was not controlling my symptoms well enough one night last month, and my muscles were no longer locked down to prevent movement. Someone was behind me, trying to kill me, and I hit them as hard as I could. Unfortunately i hit my Service Dog, who yelped and jumped off the bed. I have extreme sensitivity to Rx clonazepam (often recommended for RBD), but found out this month that one alternative treatment for RBD is melatonin, which I have taken for many years, self-medicating the acting-out factor of RBD symptoms. So the doctor simply increased my melatonin dosage, and I have had no further acting out of events from my dreams. See Link at the bottom of this entry.

“… it is normally easy to wake a person with RBD who is acting out a dream. Once awake, he/she is able to recall clear details of the vivid dream.”

Stanford points out the similarities and differences between REM Sleep Behavior Disorder (RBD) and night terrors; “In these other disorders, the sleeper is usually confused upon waking up. He/she does not become rapidly alert. In contrast, it is normally easy to wake a person with RBD who is acting out a dream. Once awake, he/she is able to recall clear details of the vivid dream.” Other comments are about common behaviors associated with RBD: “Shouting, swearing, flailing, grabbing, punching, kicking, jumping, leaping. Actions match the vivid dreams that they clearly recall. Sleep activities can result in an injury to patient or their bed partner. Uncommon (behaviors in RBD): walking, eyes open, leaving the room (those are all common signs of sleepwalking).” See Link at the bottom of this entry.

A 2013 article conclusion in Sleep Med addresses dream content differences between those involved with sleep walking/sleep terrors in contrast to those with REM Sleep Behavior Disorder (RBD); “Different threat simulations and modes of defense seem to play a role during dream-enacted behaviors (e.g., fleeing a disaster during SW/ST, counterattacking a human or animal assault during RBD), paralleling and exacerbating the differences observed between normal dreaming in nonrapid eye movement (NREM) vs rapid eye movement (REM) sleep.” See Link at the bottom of this entry.

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Note from 2016 on repeating theme: Last night’s theme was being trapped in different locations. The night before, my Care-Partner was in danger. For almost two years, I had the repeating theme of living in a boxcar and rescuing different groups in varying post-apocalyptic environments. One installment involved a group of women, another a family, and another a little boy “target,” sometimes spread over three, four, or even eight installments in one night.

Living with Lewy Body Dementia and REM Sleep Behavior Disorder has profoundly shaped my nights and my days. Sharing these experiences is not only therapeutic for me but may also help others feel less alone in their journey. If you or someone you know is living with LBD or RBD, remember that understanding and support can make a real difference. Thank you for reading and walking this path alongside me.

Associated Links on my own Blogsite: (2014-2020)

Dementia Nightmares -TLK
Impact of Terrors and Dreams
Sleep Problems Again & Best Practices
Exhausted from Dreams
Complex Nocturnal Hallucinations incorrect term for symptom of Lewy Body
Hallucination Intro: Types of Hallucinations

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Links to entries from other folks Living with Dementia of Lewy Body type:

Ken Clasper >> http://ken-kenc2.blogspot.com/2014/09/very-vivid-dreams-and-nightmares.html <<

Norrms at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/norman-mcnamara/sep-2015/ <<

Links to SOURCES used in this entry: Stanford and others.

“Hallucinations and REM Sleep Disorders in Parkinson’s Disease” – Lecture Notes

https://pmc.ncbi.nlm.nih.gov/articles/PMC6029467/

Sleep Med Link >> https://pubmed.ncbi.nlm.nih.gov/23601752/ <<

NIH Link >> https://www.nia.nih.gov/health/lewy-body-dementia/lewy-body-dementia-causes-symptoms-and-diagnosis <<

and “Science Direct” >> https://www.sciencedirect.com/science/article/pii/S0011502922001250#bib0047<< .

Further Research Links on other sites:

LBDA supplies this, which addresses RBD from ~12-20 minutes into the video.

Video below is from LBD Resource Center, with quite a few Lived Experiences, shared by care-partners of person living with LBD’s RBD:

Video below is from Parkinson’s Foundation of Excellence at Cleveland Clinic (but must increase volume):

Attached Picture:

This painting: Digital painting by me, finished on 07 Feb 2026, titled “Under Siege by RBD” (aka REM Sleep Behavior Disorder), which is a core clinical feature of Lewy Body type of dementia. These ultra-vivid dreams are almost always violent and more real than daytime activities. This painting is to go with my blog entry about RBD symptom. ~15 hours to complete. *** Used Alaina Jensen Acrylic Pour & Holo brushes on ProCreate application with Apple Pencil to compensate for my extreme tremors. Higher resolution image of painting available at my Flickr portfolio at >> https://www.flickr.com/photos/194191353@N04/ << .

Under Siege by RBD

Other contact options are FaceBook and “X” (aka Twitter), both under “Truthful Kindness”. On Reddit, i am at “TruthfulKindness” in groups “r/dementia”, “r/lewybodydementia”, and “r/alzheimers”. i dropped my LinkedIn membership quite a few years ago. If requesting “friend” status for any form of Social meedia, please send a private message explaining that you are a reader of my blog. …

* Admin issues:

Invested 13 hours on this text, plus 15 hours on art for this entry. ******* SUBSCRIPTION box is now at the bottom of each blog entry. … My own full legal name is Truthful Loving Kindness. My current formal diagnosis is still clinically at stage of “Mild Cognitive Impairment”, altho my Primary Care Physician and several other medical personnel disagree. In the past several years, We have agreed to quit seeing specialists for further clinical clarification of diagnosis and stage. Specialists are too far away, and the emotional roller-coaster is not worth it to me. My dementia symptoms are mostly Lewy Body and Vascular types of dementia symptoms, but SPECT and PET scans show my brain damage is currently most serious in the temporal lobes, which creates a lot of similarities with Logopenic variant of PPA (sub-type of Fronto-Temporal type of dementia). Current theory for the cause of my dementia symptoms is 33 years of un-diagnosed and un-treated Lyme and Babesia (which specifically targets the brain functions) before 5 years of intensive treatment for tick-borne diseases, plus probable nocturnal seizures.  … ******* …   Text Copyright © Truthful L. Kindness on 08Feb2026.   … You can find more about me in this blog under the “About Me” tab (although that page was posted long ago and also needs an update). Feel free to leave your thoughts here in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** 2026 i have begun to use “Grammarly” editor; This sacrifices my particular writing style but improves readability and reduces the time I spend in the writing process. I am still on the “free” version of the blog (except for the domain name TruthfulKindness), so I notice there are now quite a few more advertisements on the page. Sorry. Currently in negotiations to transfer to the paid version of the blog to avoid advertisements. I have no control over which advertisements are shown. … ******* …  I don’t mind re-posting of things I write, but if you re-post, then I expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and you must provide a very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com.

.  *** …  If there is an advertisement below, I have no control over what is shown. 

categ: important/crucial & Sx/Dementia Symptom Tips. tags: behavior disorder, dementia, dreams, lewy body, Mental health, nightmares, persons living with dementia, RBD, sleep, symptom, terrors. Add to Pgs/ LBD, S&S Categ: Earliest symptoms, Mood, Sleep. Done/S&S but not LBD.

Summary: This entry highlights the connection between Lewy Body Dementia and dreams of REM Sleep Behavior Disorder, including its personal impact and clinical context. The summary covers the prevalence, some of the symptoms, emotional effects, and treatment approaches.

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A Decade Later: the Power of Online Dementia communities

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I often get questions on this topic, so I am prioritizing this update. In my first week of peer group video chat, I told my husband, “I discovered I am NORMAL — at least while I am in chat with these folks … and it is a WONDERFUL feeling!”

Ai summary of the article below: “This entry updates readers on the importance of online peer groups for people living with dementia. These platforms, like Facebook and Zoom, help form connections, reduce stress, and give access to collective wisdom and support. The post also discusses the positives and negatives of mixed groups of people with dementia and care partners, and highlights several advocacy organizations worth exploring.” — 1080 words. Read time ~6 minutes.

Tru here. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. Writing is harder, so as of TODAY I have begun to use “Grammarly” to edit. This sacrifices my particular writing style but improves readability and reduces the time I spend in the writing process. I am still on the free version of this blog, which means more ads. I am working to move to the paid version to avoid advertisements.

Communication and Community are vital for continued cognitive engagement, and online peer groups for people with dementia meet this need extremely well. My groups give me peers with similar experiences who understand me. Weekly or monthly video meetings create a sense of belonging, which is especially valuable as I live with dementia symptoms. These interactions provide meaningful connections and support.

In video chats with my peer groups, I feel “NORMAL” because we share similar experiences. This supportive environment reduces my stress and benefits my care-partner. Our members have a wide variety of occupations (e.g., retired doctors, pharmacists, attorneys, etc.). The collective experiences and wisdom in these groups allow us to discuss symptoms and solutions openly. Mentoring and advocacy discussions are energizing, and being in these groups has greatly improved my quality of life.

My primary peer interactions for dementia issues include my Facebook profile and Facebook Messenger, weekly Zoom video groups with Dementia Mentors, Dementia Action Alliance, Forget-Me-Not, and Living with Lewy (through LBDA), and then monthly Zoom video with Teepa Snow and the PAC team (see these Links at the bottom of this page).

For Dementia advocacy issues, I suggest Dementia Alliance International (though MCI diagnosis is not currently included in membership), Dementia Action Alliance, and, for generalized dementia advocacy, Norm Mac’s “The Purple Angel” on Facebook (see these Links at the bottom of the page).

“Mixed groups” are social media spaces with both Care-Partners and Persons Living with Dementia. These are great for seeking help from both sides and for understanding each other’s struggles. However, care-partner venting can be stressful for those with dementia, making us feel like a “burden”. I appreciate when care-partners label venting posts, so I can skip them and focus on issues where I can help with my experiences of care-Partnering … but even more with my 25 years of Lived experience with dementia symptoms and several hundred friends who freely share their own Lived experience with me. Scanning these posts drains energy and time, so I only help in small doses and only in the morning when I have the energy.

On Social Media, Besides my Facebook profile, i have interactions with Dementia Symptom Perspectives page, Lewy Body Dementia Association “Living With Lewy”, art groups, worship groups, and these “mixed” groups with both care-Partners and Persons Living with Dementia: Dementia Support And Advice Group, Dementia Caregiver Support & Activities for Challenging Behaviors, Dementia Caregiver Support & Activities for Challenging Behaviors … where i contribute. *** On Reddit, there are r/lewybodydementia, r/dementia, r/Alzheimers, and r/DementiaCarePartners.

One of the most surprising things to me was how much i learned within the first two weeks of attending Zoom video groups of the LBDA (Lewy Body Dementia Association). i already knew lots and lots about Lewy, but so much is not well publicized.

LINKS re above entry:

Dementia Mentors in Our Words

My old entry on this topic is below (2014Aug20):

Online Dementia Communities
Text Format – My Dementia Style

Dementia Mentors at this Link >> https://www.dementiamentors.org/ << … and “contact us” at this Link >> https://www.dementiamentors.org/contact-us.html <<

Dementia Action Alliance at this Link >> https://daanow.org/ <<

Dementia Alliance International at this Link >> https://dementiaallianceinternational.org/ <<

Living With Lewy (through LBDA) at >> https://www.lbda.org/local-support-groups/ <<

My personal Facebook profile is under the name “Truthful Kindness,” and you can find more about me on this blog under the “About” tab (although that page was posted long ago and also needs updating). >> https://truthfulkindness.com/about/about-me/

This cover photo was created by Ai, using multiple artworks that I painted. Then I pulled it into the Procreate app so I could finish it with Procreate tools on the iPad, which compensates for my tremors. Lots of my higher resolution paintings are available for free download from my Flickr account at this Link >> https://www.flickr.com/photos/194191353@N04/ <<

My 2025 painting “January Snow Man” is also used in this entry. You can read more about that from the Flickr Link above ^^.

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LINKS most viewed in the past year:

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Money Control with Dementia

LINKS most viewed recently are:

DRT: Yield to communication priorities; PWD “suffering” terminology
Symptom Flare

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* Admin issues:

Invested 19 hours on this blog entry (not counting art time). ******* SUBSCRIPTION box is now at the bottom of each blog entry. … My own full legal name is Truthful Loving Kindness. My current formal diagnosis is still Mild Cognitive Impairment, but I have cerebrovascular disease and very slowly advancing Lewy Body Dementia symptoms, including REM Sleep Behavior Disorder and Hallucinations.  SPECT scan showed targets of both temporal Lobes, along with the left high parietal Lobe.  Current theory for the cause of my dementia symptoms is 33 years of Lyme and Babesia (which specifically targets the brain functions) before diagnosis and treatment, plus probable nocturnal seizures.  … ******* …   Text Copyright © Truthful L. Kindness on 2026Jan25 .   … You can find more about me in this blog under the “About” tab (although that page was posted long ago and also needs an update). Feel free to leave your thoughts here in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** … My personal Facebook profile is found under the profile name “Truthful Kindness”. Facebook comments are “FRIENDS ONLY”, so you might want to request Facebook friend status. If so, please send a private message explaining that you are a reader of my blog. … *** I am still on the “free” version of the blog (except for the domain name TruthfulKindness), so I notice there are now quite a few more advertisements on the page. Sorry. Currently in negotiations to transfer to the paid version of the blog to avoid advertisements. I have no control over which advertisements are shown. … ******* …  I don’t mind re-posting of things I write, but if you re-post, then I expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and you must provide a very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com.

.  *** …  If there is an advertisement below, I have no control over what is shown. 

Categories: Important & Symptoms. Tags: activity, cognitive decline, community, dementia, facebook, group, living-with-dementia, peer, PLwD, social-media. S&S Categ: Communication, Mentors, Relationship, Social interaction, Technology, Visits

PS of Ai short summary: “This entry updates readers on the importance of online peer groups for people living with dementia. These platforms, like Facebook and Zoom, help form connections, reduce stress, and give access to collective wisdom and support. The post also discusses the positives and negatives of mixed groups of people with dementia and care partners, and highlights several advocacy organizations worth exploring.” — 1080 words. Read time ~6 minutes.

Dementia Insights: My Journey and New Beginnings

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Sorry i have been away from this blog nearly three years. i lost access to how to get in, and recently recovered the route.

Tru here. This entry is written by Truthful Loving Kindness (yes that is my full legal name) for publishing at https://truthfulkindness.com/ , so PLEASE direct any questions or comments to that website, regardless of which website shows these words. *** i am still on the “free” version of blog (except for domain name TruthfulKindness) so i notice there are quite a few more advertisements on the page, Sorry.

Ai summary of this article is “After nearly three years away from blogging, Truthful Loving Kindness has resumed writing due to a regained access to blog administration. Despite cognitive decline, the blog has garnered significant views. Improvements in personal health and ongoing construction projects are highlighted, along with a focus on maintaining hope while managing dementia.”

.Details.

My cognitive abilities have declined further in the last three years. Nevertheless, instead of bogging down this first entry, I will use more detail in later entries for each dementia category.

It has been almost three years since I’ve had access to my page for Blog Administration, so no changes to my blog itself during that time.  But i have been extremely encouraged to discover the Blog articles have been regularly accessed during these past years even tho no new entries have been posted.  2024 had almost 8,000 views, and almost 10,000 views during 2025.  By far, the most common views were to “Links for Symptoms & Strategies” at https://truthfulkindness.com/about/d-info/links-sx-strategies/ .  So i will be trying to review the Links on that page for any “dead” Links, but i suspect it will take a while.

One of the biggest BLOG changes in the past two years is that Teepa Snow PAC team will be helping me with my blog. ((More about that later)). i plan to soon review some of the many drafts of blog entries (over 100 blog drafts) to see which ones i might be able to easily finish and post. i plan to begin with the earliest entries.

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*** My general health is better. After 25 years of trying to lose weight, I finally began actually losing weight in 2024. There were many health complications. I have lost nearly 70 pounds, and returned to my pre-menopausal weight now, which brings many health benefits. Now the remaining challenge will be to see whether my weight can stabilize.

*** Service Dog is now 9.5 years old. We are beginning the search for a puppy. Hero will be 12 years old before the puppy can take on full mobility tasks.

*** After 23 years of construction we have now hired a helper, and our house is now in final stages of construction. We have been building as we afford it, with no mortgage. We feel really good about our DIY project. It includes a full upstairs for when a third care-partner is needed.

*** Made one small revision to Symptoms and Strategies Links page, but other than that there are no changes to my blog YET.

…

*** Art:  I have loads of new digital paintings (made on ProCreate app) from the past two years.  My best paintings are still available for free download at Flickr, https://www.flickr.com/photos/194191353@N04/  but i understand they changed policies for free accounts April 2025 so i am not sure how long that will continue. .

*** As a person living with dementia symptoms, keeping an outlook of HOPE is crucial to my well-being. Any book movie, etc. that has input in my brain must have Hope or i discard the idea of reading it, watching it, listening to the music, etc. Conversations and interactions inevitably occur that pull down my perspective, so I carefully manage my inputs and sleep opportunities, to ensure continuation of hopeful perspective.

LINKS re above entry:

Yes; the cover photo is a digital painting of mine from Feb2025.

***
Again, I mostly used AlainaJensen acrylic brushes , with Procreate tools on iPad that compensate for my tremors. This higher resolution picture shown below is available for free download from my Flickr acct at https://www.flickr.com/photos/194191353@N04/54302933584 .

Hope SnoDrop

HopeSnoDrop20250202 Description per Leonardo Ai on 11Jan2026:  “Image is a digital illustration with a circular layout, featuring a central subject of a snowdrop flower emerging from a patch of snow. The background is a textured blend of icy blues and greens, creating a frosty, wintery atmosphere. At the top of the image, the word ‘hope’ is prominently displayed in a stylized, handwritten font, [[actually my own handwriting, LOL]] colored in a gradient of teal and green. The text is slightly curved, complementing the circular design. In the bottom right corner, the signature ‘Truthful L Kindness’ followed by ’02 Feb 2025′ is inscribed in a delicate, cursive script, adding a personal touch to the artwork. The overall composition conveys a theme of resilience and renewal, with the snowdrop symbolizing hope amidst the cold, wintry setting.”” –per Leonardo Ai on 11Jan2026

Click this Link for Teepa Snow >> https://teepasnow.com/ <<

About Me

LINKS most viewed recently are:

Links for Symptoms and Strategies
Focus on Essential Priorities
Verbal Comprehension Strategies Part 1

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but i have cerebrovascular disease and very slowly advancing Lewy Body Dementia symptoms including REM Sleep Behavior Disorder.  SPECT scan showed targets of both temporal Lobes, along with Left high parietal Lobe.  Current theory for cause of my dementia symptoms is over 30 years before diagnosis and treatment of Lyme and Babesia — plus probable nocturnal seizures.  … ******* …   Text Copyright © Truthful L. Kindness on 18Jan2026.   … ******* …  i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: art, Blog, cognitive decline, Dementia, lewy body, Life, living with dementia, Mental Health, PLwD, strategy, symptoms, Teepa Snow,  Writing. 

.  *** …  If there is an advertisement below, I have no control over what is shown. 

S&S Categ n/a

PS: Ai summary of this article is “After nearly three years away from blogging, Truthful Loving Kindness has resumed writing due to a regained access to blog administration. Despite cognitive decline, the blog has garnered significant views. Improvements in personal health and ongoing construction projects are highlighted, along with a focus on maintaining hope while managing dementia.”

Living with dementia symptoms feels SLIPPERY

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… precarious, elusive, undependable, insecure.  — oh, and scrambled also, of course.

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

******* Life has seldom felt more precarious and SLIPPERY than it does now.  Not only from my sensory input, but also UNDERSTANDING that sensory input.

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Slippery//embedr.flickr.com/assets/client-code.js

Understanding what i see is sometimes Fleeting and Precarious, so often unreliable.

Sight: My head bobbing up and down on my neck adds to difficulty in grabbing and securing what i see; i cannot stay still in order to stabilize my vision — it keeps changing.  Plus i am SOoo frequently seeing bugs (even around my plate at the table) that it makes eating, and moving from place to place in the house more challenging.  (Some people see small people or animals for visual hallucinations and illusions, but mostly i see bugs, LOL).  — And Lately i have been forgetting that i experience hallucinations, so everything is “real”.  Many (but not all) of my days are also spent with symptoms similar to tunnel vision.

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Understanding what i hear is Fleeting and precarious.  Seldom reliable.

Sound: Constant tinnitus, but my sound hallucinations are currently rare.  Right now the problem is understanding what i hear; i often think something else is being said because noise is not properly organized by my brain.  The sounds (figuratively) dumped upside-down in my brain bucket, then my brain gets to try to organize them into “That is the sound of the computer, fridge, etc” + “That is the sound of my tinnitus” + that is a dog sound + that is a voice word + another voice word .  … And my brain is having more difficulty making thoughts and concepts out of those words.  Currently doing better with written words than spoken words, but still only in very basic concepts.  Poems and Jokes are frequently beyond me in either format.  One moment i understand and then less than a second later that understanding has broken off.  i might get the concept again, and i might not.

Still enjoy music – but must be smooth soft sounds and must not be at the same time as trying to understand something else; Less Likely to understand anything else if music is going.  All efforts are mutually exclusive.

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Sense of smell is mostly gone.

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Sense of taste is mostly gone. 

i can taste salty and sweet, but rarely taste foods; i can taste synthetic apple drink.  i “taste” my morning egg, but if i remove the salt and pepper i do not taste anything.  Eating is mostly a textural and visual experience — and almost always disappointing.

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… So All-in-All, very few experiences are reliable except sense of TOUCH.

Stroking the dog’s fur. Hugs. Warm blankets.  These things are stable and reliable.  Right now these do not slip out of my grasp.  They are REALITY in an environment of slippy-sliding experiences.

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My understanding of anything other than touch is very VERY temporary, if at all; i might understand for a fraction of a moment — but then it is gone.  if i continue to focus  then i might understand again for a fraction of a moment — but then it is gone. etc.  When you add the Physical instability of mobility complications (Falls, stumbles, etc) and that emphasizes how the Mental and Emotional precariousness can feel like the world is a very unstable, un-Safe place to be.

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Some days we can be all perky and pour our energy into advocacy efforts, or into connecting with our peers, … but i have very few of those days now.  There is also a time to recognize, acknowledge the losses, and take time to grieve those losses. Some days we barely have the energy to swallow some protein drink and make it to the bathroom. That is life.
 
 

Personal Note: Now i seldom have days that i feel ABLE to put words together for writing — no matter how long it takes.  So i will be posting less often.  Change is inevitable.  i am looking for archival opportunities.

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LINKS:

Prose by Truthful Kindness at https://truthfulkindness.com/2014/11/07/hold-hand-anchor-me/ ; 

Sensory Challenges by Agnes Houston at https://youtu.be/U_L2107EweQ ; 

Need for Touch by Harry Urban at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/need-for-touch/ ;

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but i have cerebrovascular disease and Lewy Body Dementia symptoms very slowly advancing.  SPECT scan showed targets of both temporal Lobes, along with Left high parietal Lobe.  Current theory for cause of my dementia symptoms is over 30 years before diagnosis and treatment of Lyme and Babesia — plus probable nocturnal seizures.  … ******* …   Text Copyright © Truthful L. Kindness on 05Mar2023. Digital Painting by Truthful Kindness Titled “Slippery”; digital painting by Truthful Kindness on 2023Mar04, using iPad ProCreate app with Alaina Jensen’s Alcohol Brushes.   … ******* …  i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: ability, alzheimers, cognitive decline, dementia, insecure, living with dementia, mood, precarious, sensory processing, strategy, symptoms,  .  S&S categ: mood, sensory, touch

MyFreeCopyright.com Registered & Protected .  *** …  If there is an advertisement below, I have no control over what is shown. 

Another Bad Day

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This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at  http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words.  *******  We live on an ocean bluff, and fishing was one of the main bases of income for this town, so old fishing nets are not unknown as props. They are easy to find and useful. We have fishing nets thrown over our fence as trellis for roses, etc. In my mind, these painted fishing nets are my newest cognitive changes, separating me from doing the tasks that i was doing in the recent months.

 

Boundaries//embedr.flickr.com/assets/client-code.js This digital painting copyright by Truthful Kindness on 19Jan2023. Available at https://flic.kr/p/2ocT7uS .

 

As some have noticed, my cognitive abilities have very strong fluctuations. 
Monday was a bad day.  This is Thursday; only three days later, and another very bad night last night, making for a bad day today.

SYMPTOMS:
My dementia symptoms are very strong today, so attempting tasks with much fine motor skills or cognitive involvement (including word interactions) usually causes more problems than benefits.  Much stronger tremors, so more difficulty eating and more difficulty walking, as well as other fine-motor skills (like personal needs in the bathroom).   

i needed help getting into “Prayer Chat” today, and after i did get into the Zoom video chat i had much more difficulty understanding what was said, even with only two other persons in chat room.  So it is DEFINITELY not a day to attend a chat with more persons in chat room.

Usually not a wise decision to write on days like today, but i need to copy/paste for something else, so i might as well add as blog entry also.

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STRATEGIES: 

Symptoms are severe enough that it is not a day to even attempt tasks that require strong cognitive abilities, or tasks that require fine-motor skills (altho i am not quite to the point of needing someone to wipe my bottom on even days like today — not quite yet ).  For eating, today i need mostly finger food or sippy-cup soup.  Plan to spend the day cuddling the dog, and some of my most simple, abstract art projects.  So i hope to connect the project as featured image on this page — but we will see what happens.  … it took three hours to compile these words today; one of my quickest, but least complicated blog entries.  

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2018 “Bad Day Indicators” by Truthful Kindness at >>  https://truthfulkindness.com/2018/04/09/bad-day-indicators-suggestions/ ;

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but i have cerebrovascular disease and Lewy Body Dementia symptoms very slowly advancing.  Current theory for cause of my dementia symptoms is over 30 years before diagnosis and treatment of Lyme and Babesia — plus probable nocturnal seizures.  … ******* …   Text Copyright © Truthful L. Kindness on 23Jan2023. Featured image (top image) is Digital Painting by Truthful Kindness Titled “Boundaries”. *** Two seizure-type cognitive events this week. This digital painting was done day after the late night event Wednesday night, to go with blog entry “Another Bad Day”. Needed to admit that i was no longer reliable for one of my advocacy tasks, and that is always difficult. ******* Used Alaina Jensen’s Fibre Brushes on this one. Copyright 19Jan2023.  Bottom image is Copyright © Truthful L. Kindness on 12Oct2022  … ******* …  i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: ability, alzheimers, change, cognitive decline, dementia, living with dementia, planning, strategy, symptoms,  .  S&S categ: planning

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2022 Recent Additions including Art

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This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at  http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words.  i have not done an “Additions Update” since March, so … 
Dementia awareness is a joint project from many groups of people.  This entry is announcements for new and updated pages from Jennifer Bute, Theresa Montgomery, Cindy Odell, Truthful Kindness, Harry Urban, and Michelle Montgomery in my webSpace, … and new art not yet attached to webPages yet.

Above is a SnowFlake with names of folks included on newest Pgs; clockwise are Jennifer, Theresa, Cindy, Truthful, Harry, and Michelle.  Digital Painting by Truthful Kindness on 29Dec2022 using iPad ProCreate app.

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

Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish.
Remember, Links are in colored text, NOT the pictures.

New Pages:

Adapt and Find Happiness from Harry Urban at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/adapt-2-happiness/ ; 

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Apathy at Christmas by Michelle Montgomery at https://truthfulkindness.com/index-persons-with-dementia-pwd/michelle-montgomery/apathy-christmas/ ; 

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Back on Track by Theresa Montgomery at https://truthfulkindness.com/index-persons-with-dementia-pwd/theresa-montgomery/back-on-track/ ; 

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“Christmas Spirit High” (and recent crafts) by Harry Urban at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/christmas-spirit-high/ ; 

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Doll-Babies by Jennifer Bute at https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/doll-babies/ ; 

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Feeling Vulnerable by Cindy Odell at https://truthfulkindness.com/index-persons-with-dementia-pwd/cindy-odell/feeling-vulnerable/ ; 

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Rude Word by Jennifer Bute at https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/x-rude-word/ ; .

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LINKS re Early Symptoms of Dementia at https://truthfulkindness.com/about/d-info/links-sx-strategies/dx-early-sx-dementia/ ; 

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LINKS on Reasons to go for Early Diagnosis at https://truthfulkindness.com/about/d-info/reasons-4-early-dx/ ; 

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LINKS re Lyme Disease at https://truthfulkindness.com/about/life-other/med/lyme-notes-and-links/ ; 

LINKS re Tick-Borne Diseases and Dementia at https://truthfulkindness.com/about/life-other/med/lyme-notes-and-links/tick-disease-dementia/ ; 

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Updated Quotes and LINKS about Holiday at https://truthfulkindness.com/2020/12/17/holiday-pgs/ ;

and

“Current Theory for my own Dementia Symptoms” at https://truthfulkindness.com/about/life-other/med/theory-d-sx-2022/ .

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Notes NOT on my webspace; 

Quote from Mike Oliver in his blog at MyVinylCountdown “… what have I learned in the six years? That it’s good to have a few pairs of stretch pants with an elastic waist band. Constipation and bloating are some of Lewy’s most uncomfortable symptoms, and you will be more comfortable with pants that stretch nicely at the waist. You know, the kind pregnant women wear. Two of my daughters have just had babies and I remember thinking at one point that golly gee I look more pregnant than they do.” at https://myvinylcountdown.com/2022/12/27/the-future-of-drug-sniffing-dogs-and-other-random-thoughts/ .

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And special prose from my neurologist friend Daniel Potts; “Without Saying a Word” at https://danielcpotts.wordpress.com/2022/12/10/without-saying-a-word/ ;

Art not yet attached to WebPages:

(in this one particular section, instead of clicking on the text, for these pictures if you click the picture then it takes you to high-resolution photo at my Flickr project). 

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Ukraine Finding Peace in Turmoil//embedr.flickr.com/assets/client-code.js

Above is “Ukraine Finding Peace in Turmoil” by Truthful Kindness.

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Lighting the Way//embedr.flickr.com/assets/client-code.js

Above is “Lighting the Way” by Truthful Kindness.

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BubblyWaves//embedr.flickr.com/assets/client-code.js

Above is “Bubbly Waves” by Truthful Kindness.

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ConnectingStrings 20221202//embedr.flickr.com/assets/client-code.js

Above is “Connecting Strings” by Truthful Kindness.

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Success thru Clouds of Confusion//embedr.flickr.com/assets/client-code.js

Above is “Success thru Clouds of Confusion” by Truthful Kindness.

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Holiday Family Music Train//embedr.flickr.com/assets/client-code.js

Above is “Holiday Family Music Train”, joint project by Truthful Kindness and daughter Charlene Davis-Gipson.

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Kintsugi Ornament 20221220//embedr.flickr.com/assets/client-code.js

Above is “Kintsugi Ornament” by Truthful Kindness.

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Petals in Pink//embedr.flickr.com/assets/client-code.js

Above is titled “Petals in Pink”.

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… and i have not done a “Selfie” in a year or two, so here is from Christmas day

* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but i have cerebrovascular disease and Lewy Body Dementia symptoms very slowly advancing.  Current theory for cause of my dementia symptoms is over 30 years before diagnosis and treatment of Lyme and Babesia — plus probable nocturnal seizures.  … ******* …   Text Copyright © Truthful L. Kindness on 30Dec2022. Featured image is Digital Painting by Truthful Kindness on 29Dec2022 using iPad ProCreate app.  This is a SnowFlake with names of folks included on newest Pgs.  ((Spent ~11hrs on this art project and still not happy with it.))  … ******* …  i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: na  .  S&S categ: na .

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Spiritual and Holiday Issues with Dementia Symptoms

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.This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at  http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words.  This entry has pieces from previous blog entries, but also includes more current stuff.

 

Menorah2022//embedr.flickr.com/assets/client-code.js

i created the digital painting above on iPad’s ProCreate App, mostly using default “Hair” brushes.  Finished “Menorah 2022” on 04Dec2022. (“Shammash” candle is in the center.)  This Hi-Res version available at my Flickr page https://flic.kr/p/2o43atu .

For ME, the Holiday Season is very wrapped up in Family memories, context in ancient scriptures, AND greater Family History.  … but mode of celebrating the holiday traditions have recently changed due to dementia symptoms.

 

i have a rich treasure of inherited holiday traditions.  With the exception of ancestors for my great-great grandparents who fled Ireland during the Potato Famine, most branches of my family tree are identified with ancestors thru the mid-1700s.  Lots of the branches are filled thru the 1600s, close to 2 dozen lines to the 1400s, and a few reliably stretch to the 1300s (Scotland MacBean clan chiefs, and English high-profile persons).  So i have a rich treasure of inherited holiday traditions, including a special “Tomte” decoration from my grandfather’s family who came from Sweden when he was an infant.

With context of several Mayflower ancestors, my holiday season begins in a strong ThanksGiving celebration, then Chanukah (for which i light the oil lantern we have … and keep it lit until the end of Chanukah), Christmas, New Year, and stretches thru to the “Twelfth Night” of January 6.  

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Holiday Tree. 
Since early childhood I very much enjoyed the tradition of finishing the extended family ThanksGiving celebration at grandparent’s rural log cabin.  Then several of us would tramp thru local woods with the family the next day, searching for the perfect tree, … and the sharp scent of fir, spruce, or pine would fill the house. 

After my years spent on “Systematic Theology”, “Biblical Criticism”, and “Spiritual Roots”,
then involvement with the local Shul,
for more than 10 years we had no inside tree at our house. 
But as dementia symptoms increased, i could not remember the rationale for discontinuing such an enjoyable piece of my family history. 

Husband helped me for a few years,
repeatedly answering my questions for WHY i decided against a tree.
… but now i dont ask why NOT, because WE have decided to enjoying those holiday traditions again. 

It is important that no one is trying to proselytize me to a different spiritual or political position; it is of no benefit to either of us, because I no longer have the ability to make those kinds of decisions..  I have made my decisions and I remember that they were extremely well thought-out.  … but i can also make the decision to release those behaviors that i no longer understand, and return to my childhood traditions.

Candle-lit “Christmas Tree” was a German tradition brought to America in the 1800s, so my tree is in honor of my German grandmother, Florence Michaelis. Her family came to America in the mid-1800s.  Since she used an artificial tree in later years, my grandmother always kept her Christmas decorations up until Twelfth Night in the beginning of January, or Candlemass on February 2, which was not surprising given both her parents were of German descent.   Then she sometimes switched ornaments and tree was full of Valentines for February. One year, the first day of March she replaced the Valentines with stuffed birds set inside nests she found during prior years, and did not put her tree away until the end of April, before she left for the summer, LOL.

I especially enjoy the memory of decorating the tree on the one year my workaholic father was home for that event. i was 11 years old, it was shortly before his Lung cancer diagnosis, and he was too sick to work. We sang Carols as he lay on the couch, looking into the eyes of each one of us individually as he handed us each ornament we added to the tree. … So a decorated tree stands large in my emotional context of family memories, and I decided to resume it despite my theological “reasons” for quitting the tradition.

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There is no need to confine “Holiday” celebration to just December.  We went without “Christmas Tree” for over 10 years, but Glass, Fabric, and Porcelain ornaments hang suspended at various places in our home throughout the year.  My artificial tree now stands on the porch, but with all of our windows it is visible from most everywhere in kitchen and living room.  The tree has multi-colored Lights in December.  January it reflects blue lights and decorative icicles.  February it has red lights and hearts, etc thru every month of the year.  

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Sometimes, a day arrives when it is okay to let go of self-expectations and behaviors that we had chosen with our fully-reasoning brain;
returning to traditions from younger, less complicated time of life without guilt of should-do and should-be.

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. LINKS:

“My Spiritual Journey in Context of Dementia Symptoms” by Truthful Kindness (in Dec 2015) at https://truthfulkindness.com/2015/12/15/spiritual-journey-dementia-symptoms/ . 

History of Christmas Trees” at https://www.history.com/topics/christmas/history-of-christmas-trees ;

… and from other folks living with dementia symptoms:

Laurie Scherrer: https://dementiadaze.com/2016/11/29/dementia-christmas-tree-analogy/ ;

Kathleen Anduze: https://vimeo.com/193966991 ;

George Rook: https://georgerook51.wordpress.com/2015/12/15/boing-boing-boing/ ; 

George Huba: https://hubaisms.com/2015/11/24/dementia-and-big-family-holidays-mindmaps-on-the-enjoyment-of-all/ ; 

Judy: https://www.facebook.com/208968049513072/photos/a.209532316123312.1073741828.208968049513072/216031178806759/?type=3 ;

Jean Lyon: https://www.facebook.com/truthful.kindness/posts/10205052286285391 ; 

Myself: https://truthfulkindness.com/2015/12/22/drt-background-noise-2015-12/ ; 

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re CHANUKAH:

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Personal PS:  With my progressing dementia symptoms i am having difficulty with some of the more complicated academic lessons. Even tho i have many years in study of  scripture language and details, my short-term memory symptoms interfere; i cannot remember Hebrew terms so exegesis is difficult and i am easily scrambled with quicker categorical studies (where it FEELS like we jump all over in terms of historical era, geographical placement, and Torah Books involved). Those things are exactly what SHOULD happen in detailed study, but detailed study is beyond my current abilities.

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but i have cerebrovascular disease and Lewy Body Dementia symptoms very slowly advancing.  Current theory for cause of dementia symptoms is now over 30 years untreated Lyme and Babesia — plus probable nocturnal seizures.  … ******* …   Text Copyright © Truthful L. Kindness on 18Dec2022. “Menorah 2022” art project was done on iPad ProCreate, mostly using default “hair” brush. Finished on 04Dec2022.  … ******* …  i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: alzheimers, dementia, holiday, person with dementia, PLwD, strategy, symptoms,  .  S&S categ: holiday .

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More Toilet Issues

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.This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at  http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words.  
Caution for possible TMI (too much information).  This blog entry was triggered by repeatedly answering questions from multiple care-partners regarding excrement at inappropriate places.  

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Color and Lighting:  It is surprising how many of us have bad dreams about trying to find the bathroom door.  It is crucial that the bathroom door is a different color than the walls, that the handle is easy to open (like a lever instead of a knob) and that there is sufficient lighting in the hallway outside the bathroom door.  Frequently a “Bathroom” or “Toilet” sign is insufficient for our current needs.  

Subdued but sufficient bathroom Lighting can help avoid having excrement (poop or urine) at inappropriate places.  it also helps if the toilet or lid is a different color than the floor.
We have several night-lights in the bathroom, because bright lights hurt my eyes now and produce sensory hypersensitivity (which can make me angry at everything).  Also, the brighter the light then the more difficult it is to fall asleep again when i go back to bed.

Recognition and Hand-Coordination:  However, even aside from lighting,
i have already had days that i look at the residue on toilet paper and find it difficult to recognize what that stuff is.
My smell sensors for that sort of thing are mostly gone . Also,
hand coordination is very poor, (as shown by my difficulty with the more complicated actions of brushing teeth and brushing hair) so the toilet paper process is difficult.  
There are just certain moves that are super-complicated, and even at this stage butt-cleaning is one.  Hand must make complicated actions going in several directions simultaneously, which requires considerable hand coordination.  No surprise that in later stages of dementia, poop can end up all over.

So very embarrassing to realize i am getting close to the point that i will need a helper for this task. Cleaned plenty of bottoms when children’s brains were developing, but i REALLY wanted to be dead before my brain deterioration got to this point. ugggh 

Video from Teepa Snow (Positive Approach to Care) at https://youtu.be/x8eygfNRUlQ  is below.

 

No disasters yet for ME … but impulse shows that the day of more toilet problems is not all that far off. 
i think at this stage, i appreciate an abundance of both panty-Liners and “baby wipes” close at hand to the toilet.  Reminder that these require easy-open, secure trash container near the toilet (again in a different color from the bathroom floor).  So far these strategies are meeting my current toilet needs, but i usually need a reminder from husband to wash my hands afterward.  (Reminder while heading to the bathroom is completely ineffective because a trip to the toilet is labor-intensive, but i need a reminder when i come OUT of the bathroom.)

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Comment from Susan Milo Maroulis, shared with permission on 05Dec2022:
Very important info & having same visual symptoms & problems w hands ( my hair is very knotted now). I have lever doorknobs & I think that really helps. I may have to try one of those bidet seats that attach to the toilet- but doubt I’ll figure that out. No sense of smell for a long time. I try to go to the bathroom regardless if I need to because then I find I did need to go. I think I brush my teeth several times a day since I’m not sure when they were brushed. My hair is the worst. I have to get a better detangler. 

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Links:

Toilet Paper (everywhere EXCEPT for in the toilet) is question answered by Truthful Kindness at https://truthfulkindness.com/2021/02/28/tp-and-dementia/ ; 

NEED Frequent Toilet Trips by Truthful Kindness at https://truthfulkindness.com/2021/06/13/frequent-toilet/ ; 

!Crucial!  Feelings about wearing DIAPERS by Elmarie at https://beautifulmemories.video.blog/2021/05/05/the-morning-after/ ; 

not PLwD:  care-partner challenge of incontinence issues is in first section of this video by Teepa Snow at >> https://youtu.be/kd26usrUtDI ;

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

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but i have cerebrovascular disease and Lewy Body Dementia symptoms very slowly advancing.  Current theory for cause of dementia symptoms is now over 30 years untreated Lyme and Babesia — plus probable nocturnal seizures.  … ******* …    This entry has been in process since Feb2022.  Text Copyright © Truthful L. Kindness on 03Apr2022, but i was unable to connect the other video until 01Dec2022, so posted 04Dec2022.  .Toilet Smiley is 138kb PixaBay copyright by Alexas_Fotos (#3298205).  Permission from Susan MM at https://www.facebook.com/groups/560722000739111/posts/2804327539711868/ .  i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: alzheimers, bathroom, dementia, hygiene, person with dementia, PLwD, poop, strategy, symptoms, toilet .  S&S categ: hygiene .

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