Stay Connected Despite CoronaVirus Restrictions

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As Charles Dickens wrote (1859):
“It was the best of times, it was the worst of times.
… It was the winter of despair. … It was the spring of hope” (from Tale of Two Cities).

So, shall we give up hope … or shall we look forward ?
Do we crawl into a hole of isolation … or use media tools to stay connected ?

Tru here.

Like everywhere else in the world right now, CoronaVirus is a big topic among my friends.

Personally, i always try to focus on the possibilities.
i think the latest recommendations emphasize benefits of Video communication
… and benefits of social networks like FaceBook and Twitter.

With video tools like Zoom and Skype, we can visit from “safety” of our Living Room.
Sample of video Zoom (but with music background added) is here >> https://vimeo.com/showcase/3464118/video/264048358 .

Here are some other suggestions from a couple friends:

LauraMarie says BREATHE (13 Mar 2020)

My hope is families will take this time to become closer.
To return to activities like cooking together, conversations and gaming together.
Talking with each other instead of AT each other or arguing.
Sitting on the porch enjoying nature is still ok.

It is my hope that instead of complaining, we find the good.
Turn the negatives into positives.
This is just a season.
Make some rice and a pot of yummy beans.
When movies become boring, pull out the board games.
Actually have conversations and get to know your people again.

Most of all, show patience, mercy and Grace to each other.

When you want to fuss and yell, take a moment to breathe.
Choose your battles.
Perhaps instead of fussing, simply ask again.

Treat others as you WOULD WANT to or prefer to be treated.

Find a way to enjoy this time.
; https://www.facebook.com/therealLauraMarie/posts/10158718127411874

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Need for TOUCH
Harry Urban says (11 Mar 2020)

I often speak of the fear of the unknown concerning dementia, but it does not compare with the fear of the coronavirus. …

… we are being told not to have any physical contacts with the people we love,
no holding hands or touching someone’s cheek to give them comfort.

Meetings are discouraged to discuss our fears
and total isolation is encouraged.
Will we be able to dismiss the lessons we are learning
after the coronavirus fears calm … and ((when)) we can go to the store and buy a roll of toilet paper or hand sanitizer again.

The fears are real, but it is up to you how to handle them.
Don’t forget about us living with dementia after the coronavirus diminishes …  >> https://www.facebook.com/harry.urban1/posts/2885342774819726

….

Alzheimers Speaks Announcement:

How Is Covid 19 Affecting You And Those You Care For With Dementia?
Let’s talk about your feelings, fears, plans and ideas!

Lori La Bey is excited to facilitate this important conversation and as usual wants to hear the voices of those living with dementia, families caring for them as well as professionals and businesses supporting dementia care.

Alzheimer’s Speaks was built with a foundation of giving voice to all and helping people feel comfortable discussing tough issues in a respectful way.
We hope you will join the conversation!
Alzheimer’s Speaks Radio will be Live via Zoom this Tuesday, March 17th 11am Pacific time, 12 noon Mtn, 1pm Central, 2pm Eastern time, 6pm London, 8pm South Africa, … and March 18 in Australia . Link to join is #465951797 , at https://zoom.us/j/465951797

DAA Announcement:

Coronavirus – Impact and strategies for people living with dementia.
We would like to hold a couple special Dementia Discussions to generally discuss the Impact of the Coronavirus.

As people are scared and routines are being totally changed, and perhaps loved ones out of work, we believe there is a need for an open discussion on how people living with dementia are impacted and how we are coping. As well as a need to lend support and share coping strategies.

Our first discussion will be on Thursday, March 19th at 1pm Eastern Time. We would like to encourage people from all countries and all dementia groups to unite to support each other.

DR. Al Power will be joining this discussion to help answer questions and provide some encouragement. We are not preparing any questions before hand, just letting people talk and try to lend a compassionate hand. We will be recording the discussion to share on social media platforms.

In order to accommodate more people, a second Dementia Discussion will be the next day, Friday March 20th at 6pm Eastern time.

Dementia Action Alliance (daanow.org) invites people living with any form of dementia to join this Dementia Discussion at  10am Pacific time, 11 Mtn, 12 noon Central, 1pm Eastern time, 5pm UK, and 7pm South Africa. The Discussion will last one hour. An additional discussion will be 3pm Pacific time, 4pm Mtn, 5pm Central, 6pm Eastern time … and 10pm UK.  Learn tips from others and share your thoughts as we discuss ways to make life easier for people living with dementia and/or care partners.

The below link will connect you to our free video chat – all you need is a phone, tablet, or computer with a camera.
https://zoom.us/j/4567882023

Please share this with other people who you think may be interested.

Hope to see you there!

.— *** —

LINKS:

i think Dr. Daniel Potts says it well >> https://danielcpotts.wordpress.com/2020/03/18/social-distancing/ ;
page from retired Dr Jennifer Bute at https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/dementia-coronavirus/ ;
DAA interview with Al Power now available here >> https://youtu.be/AInBAV7uba0 ; ;
Michael Ellenbogen and i participated in 17 March Alzheimers Speaks Radio project (video) on this topic, shared here >> https://youtu.be/3ZUo4pB5gfA ;
and Harry Urban’s index page is https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/ .

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along with daily Dementia Mentors’ video chats,
( https://www.dementiamentors.org/ )
i may (or may NOT) join the following this week:
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Mar 17, Tuesday, Teepa Snow has “Lets Talk” video chat with Persons Living with Dementia has been re-scheduled from March 19 to March 17. >> https://teepasnow.com/services/online-learning/live-public-webinars/webinars-for-plwd/ .

Mar 17, Alzheimers Speaks Radio (video Chat) : See discussion above.

Mar 19, Thursday: DAA Discussion (see above).

Mar 20, Friday: DAA Discussion (see above).

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Mark Your Calendars for future events:

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POSTPONED from Mar 23, Sunday: Annual PPA Conference: Held annually by the Northwestern University Mesulam Center for Cognitive Neurology and Alzheimer’s Disease, the PPA Conference offers education and support for persons living with primary progressive aphasia (PPA), their families, and professionals. This year’s conference will focus on communication and connection. >> https://www.brain.northwestern.edu/about/events/ppaconf/index.html .  Some credit card companies have travel insurance clauses in their policy agreement.  If you have difficulty getting cancellation refund (from lodging, transportation, etc) then you may want to contact your credit card company to confirm their policy and your benefit.

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Mar 24, Tuesday, is next Dementia Chats with Lori LaBey.
This monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience. Let me know if YOU would like to participate
>> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

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UPDATE: NIH Dementia Care & Caregiving Summit March 24-25 to be Videocast Only !!!  Mar 24-25, Mon-Tue: 2020 Dementia Care Summit. The National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers is a two-day meeting sponsored by the U.S. Department of Health and Human Services and private sector organizations. The goal of the Summit is to bring together individuals with varying backgrounds to identify techniques that can be used to improve care, services, and supports of persons diagnosed with dementia and their care partners. The primary anticipated outcome of the 2020 meeting is to bring about recommendations for research priorities to inform federal agencies, foundations, and private sector organizations. >> https://www.nia.nih.gov/2020-dementia-care-summit .  Some credit card companies have travel insurance clauses in their policy agreement.  If you have difficulty getting cancellation refund (from lodging, transportation, etc) then you may want to contact your credit card company to confirm their policy and your benefit.

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CANCELLED: Apr 17, Friday: 2020 AFTD Annual Education Conference. regarding Fronto-Temporal Degeneration. Details at >> https://www.theaftd.org/event/2020-aftd-annual-education-conference/ .  Some credit card companies have travel insurance clauses in their policy agreement.  If you have difficulty getting cancellation refund (from lodging, transportation, etc) then you may want to contact your credit card company to confirm their policy and your benefit.

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 16Mar2020. Tags are: alzheimers, communication, connection, CoronaVirus, Dementia, PLwD, relationship, Strategy.

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Let it Flow

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Tru here.

Lately my concentration is extra-scattered and short-term memory has been even poorer than usual.
As grandson would say, my “Rememberer” is more broken than usual.

Needed to add item to calendar.
picked up my cell phone, but by the time i opened it i forgot why (even with no interuptions).
So i went back to what i was doing and remembered,
but by the time i opened cell phone i again forgot why.
Left cell phone open in my hand for minutes and finally remembered
— but by that time the power had turned itself off.
By the time i got cell phone “on”, had again forgotten what app i needed to open.
Gave up.
Later, realized that was why i thought i had added something to my calendar — because i remembered it so many times — but apparently never actually got it done.
growl snarl.

Tried to write blog three times this week
… each time discovering that i wrote about strategy of thinking aloud two weeks ago.
it is DONE … but i keep forgetting that i wrote it.
Started it earlier last week,
and again this morning.
Started it AGAIN after nap.
i am glad that each time i discovered that i have already written on it before i invested too many hours, but growl snarl ;
i hate wasting time !

… and it is amazing how many times a day that i turn to my husband and say
“can you help me find the words;
this and such is going on, and i want to say this and such,
but i want to say it in just a few words or just a couple sentences.”
… and he often finds the perfect words for what i was trying to say.

… but by the same token,
how many times a day is my husband talking, and i must tell him
“you know, i don’t understand anything you are telling me.
What is the topic ?
Now can you use different words and try again?
… or simply “I’m sorry, but you are speaking with building blocks, and i cannot keep the first part of conversation in my head long enough to understand second part, or third part.
So i am lost.

… and often, lately, we have needed to give up on communicating certain ideas
… because they are just beyond my abilities right now.

So switching gears and starting a new project — Posters.
(Posters don’t require words, LOL.)

This week is just sharing a past project, but lately art seems to be flowing better for me than words.  … so guess what i am doing ;
😃 Art ((smile)) 😃.😃

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This week was (ZenTangle) Art, with Beads for my friend’s birthday >> https://truthfulkindness.com/about/life-other/arts-crafts/zen-mar2020/

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Poster >> https://truthfulkindness.com/posters/not-stupid-poster/ , shared with this address >> https://truthfulkindness.com/wp-content/uploads/2014/09/my-thots-20140929-a4in300ppi.jpg

;

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Spiritual >> https://truthfulkindness.com/about/life-other/spiritual/jew-id/ ;

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Bits n Pieces (Spencer’s Birthday Poem) >> https://truthfulkindness.com/bnp/part-2/2c/srp-bday-poem1982/ ;

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 9Mar2020. Tags are: art, craft, Dementia, memory, PLwD, Strategy, Symptom.

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Thinking Aloud as Strategy for Short-Term Memory Challenges

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Tru here.

Been extra-aware of my habit for talking to myself (aloud) lately,
because it has become as issue with my spouse:

“Are you talking to me?
“Do you need me to stop what i am doing EVERY time you speak?”
“I dont know how to tell when you need me to listen.”
“I dont want you to think i dont pay attention or that i am not listening to you,
so i need to find a way to know when you are talking to ME … and not talking to yourself.”

So now, even tho i have great difficulty remembering,
i must remember to get my spouse’s attention before i speak to him.

—  ***  —

Having much more difficulty with my short-term memory lately.
Speaking to myself, aloud,
has become a very useful tool for me to keep track of what i am doing,
whether moving around in the house, or in tasks at my desk.

What time is it?
Open file for chat attendees.
Mark Julie as attendee.
Mark Michelle as attendee.
Save file for chat attendees.
What day does Guy host?
…. and even
“after i finish moving chickens i need to go potty”, LOL !

If i am thinking or doing, then words are coming out of my mouth,
to reinforce my short-term memory.

Suggestion; Tell yourself (aloud) … then tell yourself again.

—  ***  —  Technical Excerpts  —  ***  —

“A study by Dr. Christopher Atkin for Nottingham Trent University which found participants talking through complex tasks were far better at problem-solving. In fact, participants in this study made 78 percent fewer mistakes than participants asked to complete tasks by working things out in their heads. Thinking out loud focuses your attention and improves concentration facilitating enhanced problem-solving.” (above excerpt from “5 Surprising Benefits of Thinking Aloud Backed by Science” at Link listed end of blog entry, also Linked the study referrenced in article. Christopher Atkin is PhD specializing in learning and memory.)  I dont think these participants were correlated with any issues with cognitive ability, but it makes sense that it would also be beneficial for those of us who have problems with short-term memory.

—  ***  —

Per Wiki “Echoic Memory”: Echoic memory is the sensory memory that register specific to auditory information (sounds). Once an auditory stimulus is heard, it is stored in memory so that it can be processed and understood.
[1] Unlike visual memory, in which our eyes can scan the stimuli over and over, the auditory stimuli cannot be scanned over and over. Since echoic memories are heard once, they are stored for slightly longer periods of time than iconic memories (visual memories).
[2] Auditory stimuli are received by the ear one at a time before they can be processed and understood. For instance, hearing the radio is very different from reading a magazine. A person can only hear the radio once at a given time, while the magazine can be read over and over again. It can be said that the echoic memory is like a “holding tank” concept, because a sound is unprocessed (or held back) until the following sound is heard, and only then can it be made meaningful.
[3] This particular sensory store is capable of storing large amounts of auditory information that is only retained for a short period of time (3–4 seconds). This echoic sound resonates in the mind and is replayed for this brief amount of time shortly after being heard. …
Auditory sensory memory has been found to be stored in the primary auditory cortex contralateral to the ear of presentation.[13] This echoic memory storage involves several different brain areas, due to the different processes it is involved in. The majority of brain regions involved are located in the prefrontal cortex (PFC) as this is where the executive control is located … (from Wiki “Echoic Memory”, see Links below).

—  ***  —  Links for Further Research:  —  ***  —

https://en.wikipedia.org/wiki/Echoic_memory ;
https://en.wikipedia.org/wiki/Auditory_cortex ;
https://human-memory.net/wernickes-area/ ;
https://www.learning-mind.com/thinking-aloud-benefits/ and study at
https://www.researchgate.net/publication/327721605_The_phenomenological_influence_of_inner_speech_on_executive_functions ;

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 24Feb2020. Invested 8hrs over 2days.  Tags are: conversation, Dementia, inner speech, memory, PLwD, Relationship, Self-Talk, Strategy, Symptom, think aloud.

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Tru’s Art Month

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Tru here.
i know it has been too long since i last wrote, but lately most tasks are just not “sticking” to have any productive effort.
That means communication with my husband is haywire,
but it also means un-productive writing about the complications and strategies for those haywire communications.

Past couple weeks arts and crafts are flowing, but little other than those two things.
i am messing up everything (including taking meds at the wrong times).
… but when i think of a friend i am thinking in terms of colors, lines, and shapes.

So i will go with the flow.

Some other time,
will write about crocheting “Collar Bibs”.
will write about making valentine cards for 2020 (which is finished for this year)
… but my mind is already occupied with ideas for next year.
Handmade cards take a long time,
so it is good that i am already coming up with ideas 12 months ahead, LOL.

(spoiler ahead) This year thinking i will make cards based on each friend’s name in art.
Like this one which i started for my husband seven years ago (and never gave to him).

.

Meanwhile, here is a page i posted in “Life”  >> https://truthfulkindness.com/about/life-other/arts-crafts/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 17Feb2020. Tags are: arts, communication, crafts, Dementia, PLwD, .

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Hallucination Intro: Types of Hallucinations

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Tru here,
Recently asked about hallucinations.
My super-simple explanation is that, when primary cause is dementia,
hallucinations are NOT like day-dreams or night-dreams.
They are day-or-night REALITY:

“Reality” shows have become a popular thing, but is it “reality”?
We see commercials, rewind to get a missed comment, etc.
It is not reality.
You didn’t feel the pain of an animal bite, you didn’t feel the cold of the winter storm, or rain on the face.
Hallucinations give you all this and more.

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Hallucinations are not unusual in later stages of most dementias, but are often seen earlier in dementia with “Lewy Bodies” (LBD).  See Links at base of article.

Part 1: What does a hallucination feel like?

Sound, Smell, Sight, Touch, Taste.
Think of our sensory perceptions as internal traffic-control mechanism for the brain.
i suspect most of us have seen disaster (or terrorist) movies
where the traffic signals (green-yellow-red traffic lights) are no longer synchronized for safe traffic patterns.
This causes accidents, confusion of control-authorities, fear among population,
and loss of ability to respond to emergencies.
When we are in the middle of this disaster,
our years of trusting and reliance on well-functioning “traffic signals” of our pre-dementia minds
makes it almost impossible to separate ourselves from this unfolding chaos.

In the same way, our reliance on what we see, hear, smell, touch, and taste determines our reality,
… but now we are receiving false signals.

It is VERY difficult to accept someone else’s “reality” as more accurate than our own;
to somehow convince ourselves the smoke we smell, the sounds we hear, etc … are not really there.

This IS real;
my nose tells me something is smoldering.
My ears tell me a sound IS happening.
My eyes tell me that bird is sitting on the kitchen floor.

So who do i believe?  What is reliable ?!!!
a) my own senses?
b) my friend with their words of comfort?
c) my service dog’s non-reaction to the smoldering smell, sounds on the porch, or bird on kitchen floor?
… Who can i really trust with my REALITY (and safety) ??

.

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1)  For ME, one thing that is NOT helpful is to say “it’s okay; dont worry”.
Hummmmph; YOU may be “okay”.
You are not the one being told that someone else’s reality is real … and YOUR reality is false (unreliable).
No; that is definitely NOT okay.

2) At this stage, the service dog is one of my most helpful tools.
His signals provide reality-check without emotional involvement (unless there IS a bird on the kitchen floor, LOL).
But have not trained him to tell me if bugs are really on my hand, or if a radio is playing (cannot train for infinite possibilities);
3) so i must rely on sensory perception from a TRUSTED person for that
4) — the challenge is then to set aside my own perceptions, and accept their reality as higher priority than my own reality.
5) Have thought it might help to have them take photo (my tremors prevent clear photos); theorize photo would help, but i have not yet remembered to try it, in midst of an hallucination.

.

Must suggest that when i am in later stages, much better for folks to enter my own reality, and
just go with the hallucination.
Trying to convince me that what i perceive is false will probably make me feel like i am accused of being a fake
… and if you succeed; that my whole world is fake … including YOU !!!

 

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Part 2

Hallucination is like theatre of the mind;
More real than Pana-Vision.  Better than 360-surround-sound.
With no tell-tale camera-man in sight.

We are all fairly certain that the T-Rex is not going to jump off the movie screen.  The alien robot cannot truly reach us with their disintegrator rays.
… so from the safety of your home theatre, many can enjoy the distorted reality without fear of direct involvement.
When we experience the reality from our Theatre of the Mind, we do not have any context beyond our hallucination;
it IS real !!

Please be aware, i may need someone to sit with me;
giving me the reassurance that i am safe when this cerebral theater closes down.
Talking me thru it, talking me out of it;
demanding that i “get a grip”, ignoring my own reality and re-entering YOUR reality,
is not as simple as clicking your heels three times (Wizard of Oz).

 

According to Wiki, “A hallucination is a perception in the absence of external stimulus that has qualities of real perception. Hallucinations are vivid, substantial, and are perceived to be located in external objective space.” (See LINKS).

Michigan Medicine (U of M) calls it miswiring; “The mind often plays tricks on people with dementia as brain cells degenerate.
Their brains often distort their senses to make them think they are seeing, hearing, feeling, smelling or experiencing something that isn’t really there.”
(See Links; UofM and “Sound Hallucinations”).

Sound

For ME,
My Sound (auditory) hallucinations began 2008 as complications from 31 years untreated Lyme Disease.
Lyme specialist gave me very simplified explanation.
He said that my sound hallucinations –for ME at that time — were caused by
brain inflammation pushing on the sound-processing section of my brain.
Sounds from my past (hymns etc) were re-enacted in my current sensory experience.
So i am experiencing the sounds in real-time
… but actual sounds were received from ear to brain at some time in the past, and stored in audio memory.

Infections of various types (Tick-Borne Diseases, Bladder infection, etc) can trigger hallucinations even without general cognitive decline,
… or intensify the problems in someone who has dementia symptoms.  Also 2018 study found 16% of those with hearing loss experienced auditory hallucinations >> https://pubmed.ncbi.nlm.nih.gov/29554989/ .

.

Smell

Smell (olfactory) hallucinations came next for me, probably in 2012 or 2013.
Asked among my friends a couple years ago, and
the most frequent SMELL hallucination (for me AND my friends) is something hot and dangerous;
the smell of a hot burner, or frayed electrical cord … smoldering.
Other varieties can be the smell of farts, poop, etc.
But smell hallucinations can also be pleasant; once or twice i have had
the smell of new-mown grass — in cold winter, in the bedroom, shut up under the covers.  LOL.
(See Links; “Smell Hallucinations”)

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Sight

In “Complex Visual Hallucinations; Clinical and Neurobiological Insights” Manford and Andermann summarized three pathophysiologic causes for complex visual hallucinations;
“The first mechanism involves irritation (e.g., seizure activity) of cortical centers responsible for visual processing.
Irritation of the primary visual cortex (Brodmann’s area 17) causes simple elementary visual hallucinations,
while irritation of the visual association cortices (Brodmann’s areas 18 and 19) causes more complex visual hallucinations.
These data are supported by both electroencephalographic (EEG) recordings and direct stimulation experiments.”  .
(See Links; NCBI).

i have seldom experienced sight hallucinations, but on those few occasions, they have almost always been bugs; bugs on my skin, skin of grandsons, skin of dog, or bedroom floor.  i dont think i have had a daytime sight hallucination in several years (unless i just ignored then forgot, LOL).  Retired Dr Jennifer Bute wrote about one of her visual hallucinations here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/hallucination-goat/ .

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Touch

i dont think i have ever experienced a hallucination of touch sensation.

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Taste

i dont think i have ever experienced a hallucination of taste sensation.

Nocturnal

Another Type of hallucination that i rarely see listed is “Nocturnal Hallucination”.
These have also become less frequent for me.
((… or maybe not, LOL; Husband says i mentioned one last week.))
Some folks call these “night terrors”, but i think there is a difference.
Cannot remember where, but i read night terrors have only 1 or 2 episodes per night,
but these events are over and over and over again during the night, creating strong avoidance of sleep.
These are extremely vivid; more real that daytime reality, and often have a repeating nature to them
… in that i often return to the same environment when i fall back asleep,
perhaps with a new set of characters, but usually same environment.

2026 update: We have now discovered that if Lewy Body type of dementia is present, these are not called nocturnal hallucinations.  Recently found that for ME, these fall under the umbrella term of RBD, aka REM sleep Behavior Disorder.  Some aspects of this disorder have been controlled with medication since shortly after the 1997 onset, but again became more noticeable recently and required an increase in medication.  Made no changes to 2019 blog entry; only adding this note.

More from me here >> https://truthfulkindness.com/2016/01/19/impact-terrors-dreams/ .
Retired Dr Jennifer Bute writes about nocturnal hallucinations while staying away from “home” here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/nocturnal-hallucinations/
… and writes about the differences between illusion and hallucination here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/night-illusions/ .

.

Note re Capgras DELUSION:  Capgras is a delusion (similar to hallucination, but there are some differences). aka “Imposter Syndrome”. There is pretty good write-up on this topic at Web MD (which is the website recommended by one of my specialists) >> https://www.webmd.com/mental-health/impostor-syndrome-capgras .

.

UPDATE: i was asked how care-partner can help during and after hallucination:
For ME right now, one of the big things is do NOT say “it is OKAY”.
i need questions of what i am experiencing, so that i can better clarify in my mind what is happening.
At this stage i will probably ask what YOU see, hear, and smell.
Personally, i need to hear your voice, and be Lovingly held while my brain struggles to reconcile what is REAL. (Held, but not restrained)
　 THANKS for asking .

Link to possible Strategy option >> https://truthfulkindness.com/2022/06/27/orienting-2-reality/ ;

.

More LINKS:
LBDA >> https://www.lbda.org/go/symptoms-0 ;
Wiki >> https://en.wikipedia.org/wiki/Hallucination ;
UofM >> https://healthblog.uofmhealth.org/brain-health/illusions-hallucinations-and-delusions-how-to-spot-dementia-symptoms ;
Sound Hallucinations >> https://truthfulkindness.com/2018/12/11/tinnitus/ ;
Smell Hallucinations > https://truthfulkindness.com/2015/01/19/smell-hallucinations-dementia/ ;
NCBI >> https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2660156/ ;
… and another one from me >> https://truthfulkindness.com/2017/06/01/hallucinations-forgetting/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 26Jan2020 with 22hrs invested. Tags are: Alzheimers, audio, Dementia, Hallucinations, Lewy Body, nocturnal, olfactory, PLwD, sight, smell, sound, Strategy, symptom, tips, visual.

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Reading Clocks

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Tru here.

Again, i can only speak for myself, but i suspect i am not the only individual with dementia symptoms who understands analog clocks (with numbers on round face) better than digital clocks (with only numbers).  i also suspect there will be progressively less of us NEEDING analog clock during coming decades and century, simply because i think digital clocks are used almost exclusively now; analog clocks dont seem to be needed and are “old fashioned”.

When i started school, all clocks were analog.
Clock pictures were all a happy round face with two hands.
That has changed with the years, to where most folks understand both analog and digital clocks.
But i think SOME schools may have mostly abandoned teaching time with concept of analog clocks.

Last week my computer needed upgrade to Windows 10, and
one of the things lost was the analog clock widget on my desktop.
…  Now i discovered i am having much more problems with time.
.

Digital clocks require ability to subtract, and
ability to keep in mind that we are working with 60 minutes as a complete unit;
not divisions of 10 or 100 as is customary.
… But i am losing those abilities.

.
… For ME;
i need to see that there is “this much” space before the long hand gets to the top of the hour.
i need to see that there is “this much” space before both hands are at the top of the clock and it is naptime.
i need to see that there is “this much” space before the short hand gets to the bottom of the hour, and night arrives.

—  ***  —

LINKS:
1) The issue of clocks in schools >> https://www.cbsnews.com/news/u-k-schools-getting-rid-of-analog-clocks-because-teens-cannot-tell-time/ ;
2) Microsoft has retired the feature in newer releases of Windows. Gadgets could be exploited to harm your computer, access your computer’s files, show you objectionable content, or change their behavior at any time. An attacker could even use a gadget to take complete control of your PC.  >> https://support.microsoft.com/en-us/help/13787/gadgets-have-been-discontinued ;
2) Found an analog clock app, but don’t know whether it is “safe” (carries any spyware, etc.)  >> https://analog.onlineclock.net/simple/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 20Jan2020. Tags are: Alzheimers, Clock, Dementia, Organization, PLwD, Time, Strategy, symptom.

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Change in Lighting Needs

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Tru here.

SunLight is very important to me.
i designed this house for maximum benefit of daylight.
All exterior walls have loads of windows, and doors are clear glass, along with a glass-enclosed wrap-around porch,
… but, until dementia symptoms arrived, at night i needed it very dark.

Before dementia symptoms i needed it very dark at night, but
now, because of nocturnal hallucinations,
i NEED to orient soon as possible when waking up.

Sometimes the hallucination-environment is super-imposed over my bedroom environment,
so need a bit of light to orient
— but not too intense that i cannot return to sleep.
(Interferes with melatonin secretion.)

Hope is to return to sleep — but not return to the ultra-vivid scary environment of my dreams.
With dim lighting i can recognize familiar shapes and items in bedroom or living room,
so it reduces likelihood of these things being incorporated into dreams
during this nether-time between sleep and wakefulness.

Minimum of 2 side lamps (wall sconces) on each wall, in each room of the house.
Each of these Lamps hold a 7-watt bulb, or are higher wattage but gold/orange in color.
Having multiple low-wattage lamps helps eliminate shadows that can be mis-interpreted as part of an illusion.

“Even dim light can interfere with a person’s circadian rhythm and melatonin secretion.
A mere eight lux—a level of brightness exceeded by most table lamps and about twice that of a night light—has an effect,
notes Stephen Lockley, a Harvard sleep researcher. ” (per Harvard Health Publishing * — see article in Links below).

.

On 15 Sep 2014, Victoria L. Dunckley M.D., of Psychology Today, wrote:
“The healthiest light is sunlight or candlelight, followed by incandescent, then halogen, then LEDs, then CFLs.
I recommend that parents of children with psychiatric, neurological, learning, or chronic medical conditions
switch out all CFLs in the home for incandescent or halogen bulbs.”  (CFL is Compact Fluorescent Light * see article in Links below).

.

When evening arrives, the side lamps go on throughout the house.
Overhead lighting is turned off an hour or two before bed, to encourage a feeling of sleepiness.

((Another change is that i am No longer able to use flashlight; creates dis-orientation for balance, and i will fall. See Link at base of entry.))

Links:

This entry in video form >> https://youtu.be/g7epZpNqPVc ;

* >> https://truthfulkindness.com/2019/10/31/lrnd-power-outage/ ;
* >> https://www.health.harvard.edu/staying-healthy/blue-light-has-a-dark-side ;
* >> https://www.psychologytoday.com/us/blog/mental-wealth/201409/why-cfls-arent-such-bright-idea .

PS: it is difficult to understand how very long it takes me to write these days. began this entry 18Jun2018, and worked on it again 07Sep2018.  Spent 4 more hours on it 09Jan2019, then made some revisions, and created a graphic, but still cannot understand what i am reading well enough to know if it makes sense, so husband helped me finalize it on 12Jan2020.
.
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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 13Jan2020.  Tags are: Alzheimers, Dementia, Lewy Body, Lighting, PLwD, Sleep, Strategy, symptom.

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Verbal Greetings

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Hello.  Tru here.

Holidays, New Year, and in fact every day that has social interaction is full of greetings.

1. Greetings can be very confusing;
if you are really just saying “Hello” … then please just say “HELLO” (or Good Morning, etc),
instead of confusing me by asking a question (ie: How are you)
then being frustrated when i take your time by answering it.

2.  Please don’t ask me “How have you been Lately?” (Yesterday is gone, so How should i know?)
That question first brings frustration, because reinforces the fact that i have no idea how i have been (in the past).
Then i must translate to a question that i DO have ability to answer, such as
“How are you feeling (right now)?”, or “How are you today?” 😀

3.  If you ASK a question, then
be prepared for fact that it will probably take more than a few moments to compose words
translating my feelings into words.

4.  If you ASK how i am doing, then
do not be offended or embarrassed by the nitty gritty that i might not be doing well at all !
i am not asking for pity or “Woe is me, send me a pity-party”.
There must be truth for meaningful relationship,
and i am trying to uphold my portion
of what i hope is, or will become, a relationship
(even if it is a very brief relationship).
If i am doing great, then that is probably what i will say,
along with some of the highlights.
If life is skating from one catastrophe to another,
then that is probably what i will say, along with some of the highlights.

5.  * i am not a good conversationalist any more.
After answering your question, most likely i will be at a loss to continue the conversation.
It’s not that i am not interested or don’t enjoy your company
… i just have a difficult time transitioning into more ideas and social graces.
So please do not be offended if the conversation has elephant-sized pregnant pauses on my part.
Plenty of things that we could talk about, but i will probably not think of them,
… so the ball is in your court to keep the conversation going.

.

Links:

This entry in video form at >> https://youtu.be/lJriC971MdQ .
Part 1 >> https://truthfulkindness.com/2014/12/12/verbal-comprehension-strategies-1/ .

Vids:

“Dementia Chats” on 14Mar2017  https://youtu.be/ldWJnMyjtEE & 12Dec2017  https://youtu.be/QJQqJU23-4c  .

…
* Husband added last paragraph (#5) but i recognize its accuracy.  Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright ©Truthful L. Kindness 2020Jan06. Tags: conversation, dementia, dementia relationship tips, greeting, PLwD, relationship .

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My Blog during 2010s

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Tru here.

2019 is ending.  This week ends the 2010’s … and begins the 2020’s.  Sooooo …

Purpose for blog has been therapy and advocacy;
as personal therapy for my own frustrations,
and to help professionals, family, and friends better understand symptoms,
and assist in brainstorming possible strategies.

My most viewed blog entries each year have been:
.

2014

2014 was https://truthfulkindness.com/2014/12/12/verbal-comprehension-strategies-1/

.

… and “Brilliant Scattered Conversation” at https://truthfulkindness.com/2014/09/29/my-thoughts/ .

.

2015

2015 was https://truthfulkindness.com/2015/07/07/feeling-left-out-with-dementia-symptoms/

.

… and “Self-Identity” at https://truthfulkindness.com/2015/06/07/self-identity-am-i-still-me/ .

.

2016

2016 was https://truthfulkindness.com/2016/01/26/import-communication-pwd/

.

… and “Where am i” at  https://truthfulkindness.com/2016/05/08/first-time-of-where-am-i/ .

.

2017

2017 was https://truthfulkindness.com/2017/01/25/film-review-for-alzheimers-every-minute-counts/

.

… and “Hallucinatins” at https://truthfulkindness.com/2017/06/01/hallucinations-forgetting/ .

.

2018

2018 was https://truthfulkindness.com/2018/04/09/bad-day-indicators-suggestions/

.

… and “to Neurologists” at https://truthfulkindness.com/2018/05/01/2-neurologists/ .

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2019

2019 was “Context of Appearance” at https://truthfulkindness.com/2019/05/27/context-appearance/

.

and “Floating Words” at  https://truthfulkindness.com/2018/12/31/floating-words/ .

  —  ***  —

Began this Blog project July 2014.  With this entry, i have posted 215 blog “entries” and 310 “pages” dealing with dementia issues (plus 80 pages on personal things like Family History and Memoirs). Over 300 of those pages have been with contributions from others.  See https://truthfulkindness.com/index-persons-with-dementia-pwd/ and https://truthfulkindness.com/dementia-success-stories/ .

Someday, i hope that Professionals, Family, and friends of those with dementia will discover the value from Lived Experience stories about symptoms and strategies — then application of that information can help in relationships and task execution for so many aspects of life.

Best wishes for 2020 … for ALL of us !!!

Other Links:  About my Blog at https://truthfulkindness.com/about/about-blog-mailroom/ .

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright ©Truthful L. Kindness 2019Dec30. Tags: Best, blog, dementia, PLwD .

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Recent Additions 2019Dec 16

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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.

—  ***  —

My infections are finally clearing up, so i have a bit more energy.
These are pages recently added on my website:

.

Harry Urban “It’s NOT okay” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/not-okay/

.

… And added in my Spiritual Journal section is

“Prayer IS Action” >> https://truthfulkindness.com/about/life-other/spiritual/prayer-action/

.

Index for Other Contributors is here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/ ;

Index for Spiritual Journal is here >> https://truthfulkindness.com/about/life-other/spiritual/ ;
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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 06Dec2019. Tags.

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