Dementia and Seizure intro

Posted on October 23, 2022 by Truthful Kindness

.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. Husband warns me that part of this entry is TMI (Too Much Information).

“Dementia is a risk factor for epilepsy.” per Epilepsy and Behavior Oct 2020 >> https://pubmed.ncbi.nlm.nih.gov/32693380/ ...

“… In patients with Alzheimer’s disease (the most common form of dementia), approximately 10-22% have at least one unprovoked seizure.” … ”
Seizures in Alzheimer’s disease are more likely to occur with early-onset disease …” and also
“… the presence of cognitive impairment may impede an accurate diagnosis of seizures.”
— per Drugs and Aging 2003 >> https://pubmed.ncbi.nlm.nih.gov/12964886/ .

We are still not sure that these “cognitive events” i experience are actually nocturnal seizures, but it makes sense that they are. My sleep-deprived EEG was “abnormal” but impaired by the technicians whispering during my entire test, while they wanted me to “sleep” (not that i could sleep being completely still on my back (as a tummy sleeper, or without my ear plugs, or without my CPAP) — ugggh !!! … so now i am on the waiting list for another specialist (since my cognitive specialist does not deal with seizure issues).

For ME, these are my symptoms with “cognitive events”:

Doctor strongly suspected seizures as cause for my sudden onset of memory-loss symptoms at age 41 in 1999, when I had challenges of too much sleeping (early 90s) rotating with no sleep (later 90s) and falling out of bed during sleep. Migraines began and were very frequent during 1990s, but then the head pain stopped. Current doctor theorizes migraines continue, but without the head pain. If so, I suspect they are usually after my cognitive events. Doctor sent me to Univ/Calif for EEG after the big events Feb 1999, but nothing showed. We did not think about the fact that both Feb 1999 events were during naps at work (because I was having extreme fatigue but still trying to work). I was half-asleep during both events during Feb1999. Both events had sound hallucination (sizzling electrical sound), smell hallucination (hot smoking smell) and were followed by several days of bizarre memory symptoms and confusion. (Bizarre” because my memory and confusion symptoms did not show hardly at all until that time). *** Not always immediate to know I had an event.

* Sometimes during the night I have sharp brief head pain, and morning shows symptoms of “event”.

* Sometimes I have what i suspect are nocturnal hallucinations (extremely vivid “dream?” during sleep) with color and smell as well as sight – but feels much more REAL than daytime “reality”

* Often have extreme night sweats with these events, so use mattress pad.

* Sometimes I wake with my tongue in my teeth and blood in my mouth.

* Sometimes I wake with cuts on tongue or inside of cheek.

* Almost always, when I wake after an event I have drooping eyelids similar to migraine (altho almost never have long-lasting head pain like in 1990s).

* Sometimes I have sound or smell hallucinations shortly after waking, or during the next couple days.

* Sometimes when I wake it takes quite a while with my hallucination “reality” as a semi-transparent “overlay” on what I see with my eyes … becoming more transparent until finally the daytime reality is all I “see”.

* Fatigue: Always after an event I wake much more exhausted than when I went to bed. Energy recovery can take anywhere from a few hours to a full week (that is assuming I have no further “events” during that period). Will sleep up to 5 extra hours during first day.

* Almost always I feel more unsteady, needing walker even inside the house, for up to a week after an event.

CONFUSION: After a cognitive event, I always have greater confusion than my current “normal”; Typical “confusion” after cognitive event involves:

* Often had time periods where I could not remember how to get hot or cold water from kitchen tap, so now husband wrote “hot” in bold marker beside that side of faucet, with “cold” written on the other side. The first time this occurred was 1999 after those events, but continued periodically after events until he marked the faucet in kitchen. (Because of this symptom, all bathrooms have separate faucet for hot and cold).

* After an event I am more likely to substitute other things for the toothbrush, or for toothpaste. After one recent event I started to take medication by pouring my drink into my hand (instead of putting pills in my hand).

* Sometimes have “dream-like” quality for hours afterwards (kind-of separated from what is happening in my environment). When this combines with the ultra-reality of night-time dreams or hallucinations, it creates problems of learning and remembering which “reality” is to be APPLIED in daytime relationships.

* Frequently I have several time periods where I appear staring and frozen; I am not asleep, not worrying, and often not even truly “thinking” about anything … but when husband asks, I often say “I don’t know what I was thinking or doing”, or “I want a drink” (but cannot process how to get one), or “I want to feed the dog” (but cannot remember how to do that).

* Seldom but sometimes have what I call “time bubbles” when I am at toilet looking at toilet paper but not recognizing what is on it, or when I forget our address, etc. i suspect these “time-bubbles” caused the first episodes of not recognizing the way my husband looks, altho that is pretty much part of my current “normal” now. My first cognitive “event” (1999) had several time bubbles in following days where I lost memory of recent events, how to spell daughter’s name, etc. But frequently these frozen moments are just what I think of as brain catch-up moments; brain needs a rest, so it just takes a time-out without asking. LOL.

Loads of things can go wrong after a cognitive event, so requires close supervision during first few days after a cognitive event. Obviously, this description is a conglomeration of copy/paste from journal.

Non-Personal Notes:

i often hear care-partners speak of involuntary repeating movements of hands, arms, or face.
This might involve involuntary repeated lip-smacking, twitching, chewing, swallowing, picking with fingers, etc. Also the issue of staring into space, unresponsiveness, a sense of detachment from surroundings, or unusual amnesia can be indicators of seizure..
More about these symptoms at https://www.webmd.com/epilepsy/understanding-epilepsy-symptoms .

This Link at Epsy Health Blog (https://www.epsyhealth.com/seizure-epilepsy-blog/how-are-dementia-alzheimers-disease-and-seizures-linked) has some good info; “

Parkinson’s and epilepsy: One UK study found that people with Parkinson’s disease were more than twice as likely to have epilepsy than people without Parkinson’s.
Alzheimer’s disease and epilepsy: Numerous studies have shown that people with Alzheimer’s are more likely to have seizures. One paper reported that over 40% of people with Alzheimer’s had epileptic activity in their brains.

… and “Dementia seizures may appear as:

Tonic-clonic seizures: This kind of seizure is most easy to recognize. The person having a seizure will go stiff, fall over and shake on the ground. Learn more here
Focal seizures: This kind of seizure might be harder to spot. The person having seizures may stop and stare and become confused. They may also behave in unusual ways, such as smacking their lips, twitching or making strange noises. Learn more here

“… it is estimated that at least 5-10% of seizures or epilepsy in older individuals (aged > 60 years) are caused by a neurodegenerative dementia. In the vast majority, one of the four following diseases is involved: Alzheimer’s disease, Lewy body dementia, frontotemporal dementia, or vascular dementia. These diseases cause, not only seizures or epilepsy in affected patients, but cognitive, behavioral, and motor disorders as well. As a result, the challenges of treating seizures in older patients with neurodegenerative disease go beyond the usual limitations associated with this age group (i.e., lower fluid compartment, lower protein binding, increased risk of drug-drug interactions) by imposing other issues and pitfalls. .” per Drugs and Aging Mar 2021 >> https://pubmed.ncbi.nlm.nih.gov/33314010/ .

Another Link at https://www.alzheimers.org.uk/blog/what-link-between-seizures-and-dementia .

Dont want to lose this link … for next time >> https://www.epilepsy.com/complications-risks/emergencies/seizure-clusters .

… For early-to-moderate stages i have gathered LINKS for dementia symptoms and Strategies (alphabetized) at >> https://truthfulkindness.com/about/d-info/links-sx-strategies/.

. For more advanced stages Teepa Snow has excellent series called “Making Visits Valuable” beginning at >>… and Listing at https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX .

* 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 my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness on 23Oct2022. 146kb “Cognitive Event” copyright Truthful Kindness on 19Oct2022. Created on iPad ProCreate application primarily using Alaina Jensen’s Acrylic 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: alzheimers, dementia, epilepsy, person with dementia, PLwD, seizure, symptoms. S&S categ: health risk, .

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Letting Go

Posted on October 16, 2022 by Truthful Kindness

Tru here. October is a good time to focus on Letting go.
“The trees show how lovely it is to let go” — partial autumn quote from unknown author.

(picture below from Jose Antonio at https://flic.kr/p/2mJmxNS )
//embedr.flickr.com/assets/client-code.js

Sorry for 3-month absence on blog and FaceBook; multiple “cognitive events” (probably nocturnal seizures) during those months, each with little time for recovery before the next event. 28Sept2022 EEG was “abnormal”, but no seizures were triggered during the recording— not surprising since the technicians were whispering during the entire time they told me to “sleep”. Growl-snarl..
Events are less frequent right now, (no event in more than a week), which gives me time for recovery, so i am back.

… but these events have given me a helpful foretaste of future symptoms, which i am working on now.

What strategies can i put into place, to better adapt to these not-quite-future symptoms that i experience in the days after an event? ((Because as my dementia symptoms advance, these will probably be part of my “new normal”.))

i can also consider; With this set of declining Abilities, what activities can i prepare for that will hold my interest in the coming-up stages?

***

THEN, After those strategies are put in place, i can quit spending time thinking about the symptoms; and

Let it go!

… Put my troubles into bubbles … and blow them away.

or throw a stone to symbolize the fact that i do not need to be worrying about that symptom, because i have done everything i can do about it … and watch the ripples disappear.

THEN take 3 deep breaths to re-set body systems.

Above photo by Nancy Rose at https://flic.kr/p/6orXhn .

…

Harry Urban’s last writing might be good as follow-up for this … at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/adapt-2-happiness/ .

… For early-to-moderate stages i have gathered LINKS for dementia symptoms and Strategies (alphabetized) at >> https://truthfulkindness.com/about/d-info/links-sx-strategies/.

* 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 my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness on 16Oct2022. For “Letting Go” cover image i used iPad “ProCreate” application and Alcohol Ink brushes by Alaina Jensen to create the background(4hrs), then layered it under a leaf i made last year. Additional pictures are credited within text of this blog entry.
*** 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, person with dementia, mood, planning, PLwD, strategy, stress. S&S categ: mood, planning.

…

((quote and graphic of Bubbles in spring, or spreading dandelion seeds in late summer or Autumn “The trees show how lovely it is to let go” — partial autumn quote from unknown author.)).

Orienting to (Someone Else’s) REALITY

Posted on June 27, 2022 by Truthful Kindness

Even with early-to-mid-stage symptoms, i have great difficulty when told that my REALITY is not real — but someone else’s reality is real. What i see, hear, smell, touch, and taste (yes there are also taste hallucinations) is unreliable. … So …

it leaves me as a nothing.
it obliterates my sense of SELF
which is integral to my well-being.

This is true whether hallucination or simply delusion. In EARLY stages, “orientation to reality” (“consensus reality” >> https://en.wikipedia.org/wiki/Consensus_reality ) can be helpful, because we still have the ability to reason-out the logical conclusions, but in mid-to-later stages it becomes much more complex on whether these efforts can be helpful or not.

When i remember that i have dementia symptoms, then i can ask for your input, put ear plugs in (to figure out if it is sound hallucination), maybe take a photo (to figure out if it is visual hallucination). … and even right now, sometimes i forget that i have dementia symptoms, and it is helpful (at this stage) to remind me that i have hallucinations.

Later it will not be helpful to remind me that i have hallucinations. it will NOT be helpful to try to orient me to consensus reality.

it will be good if you have done a bit of practice with “improv” when i get to that point. >> https://www.ama-assn.org/delivering-care/public-health/how-improv-helping-patients-alzheimers-disease . Improv techniques allow the care-partner to “step into my world” and go with the flow of ideas instead of forcing MY world to try to conform to the reality that does not exist for ME.

Here is a 10-minute video that illustrates improv benefits when family or care-partner for a Person Living with Dementia symptoms. It begins with the principles in Links above, but takes it a bit further. ((However, for ME, i would prefer you do not agree to something that is not true; perhaps instead of “Yes and …” it might be better to say “Oh i didnt know that — and … ” .))

Links:

In addition to the Links above, this one is good >> https://www.seniorsguide.com/alzheimers-dementia/improv-for-dementia-interaction-methods-for-memory-loss-patients/ .

Types of Hallucinations by Truthful Kindness at https://truthfulkindness.com/2020/01/26/hallucination-types/ ;

… For early-to-moderate stages i have gathered LINKS for dementia symptoms and Strategies (alphabetized) at >> https://truthfulkindness.com/about/d-info/links-sx-strategies/.

* 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 my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness on 27Jun2022. For the blackboard “Reality” image, i combined bird from photo by Sergey Lapunin at UnSplash (https://unsplash.com/photos/m4WGUwoLQlY ) in Kitchen photo by Paul Hanaoka at UnSplash (https://unsplash.com/photos/Dl6H4_nzBpE ). Then added a screen shot of my calendar and a combo-pic for Guy and me in 1992 in contrast to 2017. This was a ProCreate project using Alaina Jensen’s Chalk set. *** The door pic started with photo frm Stephen Poore on UnSplash, at https://unsplash.com/photos/SA3QGeKiKRk . then i added other stuff on top of 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: alzheimers, caregiver, delusion, dementia, hallucination, improv, person with dementia, PLwD, reality, symptoms, strategy. S&S categ: delusion, hallucination.

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Stability and Landmarks

Posted on May 22, 2022 by Truthful Kindness

Feels like my INTERNAL Landscape is losing its Landmarks (aka anchors).
The happenings of life are overcome with Shades of gray and there is nothing to orient myself. The convoluted nature of everything from fact to fiction is very confusing for me now. And “change” is equivalent to earthquake.

in fiction stories or news stories, i NEED something to identify the “good guys” from the “bad guys”; i need some kind of orientation or pattern in order to process what is happening. but instead everything is just kind-of … gray.

Mostly i am now sticking with stories and films that i have seen and enjoyed in the past; which gives me a framework for watching the story again. if i have only watched it a couple times then i need husband nearby for when i ask “is that person a good guy?”. There is comfort in watching a show or reading a story that has familiar characters — then i am no longer relying on my fast-disappearing short-term memory in order to orient in the story.

Repetition and pattern is crucial in my life, because it promotes stability and orientation.

Please do not move my belongings, because those items are not un-necessary, even IF everything in that stack was actually “useless” (which it is NOT). That stack is a Landmark for where i find the tools that i use. It is needed as a Landmark. My mind-picture of that “pile of junk” is what i go past, then immediately turn right in order to find the mind-picture of the tool i am Looking for. When that pile changes in height, width, shapes and colors, then i cannot find my tool that belongs just to the right of that stack. … it gives me orientation in the gray mass of physical Landscape.

i cannot seem to keep anything organized in my mind, and i am almost frantic for consistency and dependability.
My world is a sea of swirling change in my abilities and perceptions.

so it is no surprise that i FEEL more clingy… i dont recognize the way you LOOK, but as long as you are doing the things that my husband does, or talking, then i recognize you are my husband.
— You are my anchor; you are a known quantity and i rely on you not only for food and love, but for keeping my world as stable as possible.

Links:

Frosty and Fragile” by Truthful Kindness at >> https://truthfulkindness.com/2019/01/28/frosty-and-fragile/ ; and https://truthfulkindness.com/2014/11/07/hold-hand-anchor-me/ written 13Sep2012;

… For early-to-moderate stages i have gathered LINKS for dementia symptoms and Strategies (alphabetized) at >> https://truthfulkindness.com/about/d-info/links-sx-strategies/.

. For more advanced stages Teepa Snow has excellent series called “Making Visits Valuable” beginning at >> … and Listing at https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX .

* 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 my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness on 22May2022. 527KB Digital painting copyright Truthful L. Kindness on 19May2022 (dn frm 1319KB). Used ProCreate ap with Apple Pencil 2 on iPad. Background done with Liquid tools, and foreground with default 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: alzheimers, confusion, dementia, mood, pattern, person with dementia, PLwD, routine, symptoms, strategy. S&S categ: confusion, home, planning, routine.

March Pages Added

Posted on March 31, 2022 by Truthful Kindness

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.
In addition to any blog “entries” during March, Word Press has blog “pages” (which go into different categories at the top of the window). This particular entry is Links for pages posted and Art Projects during March 2022.

!! 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.

“Too Many Choices” by my friend Michelle Montgomery at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/michelle-montgomery/multiple-choice/ ;

Links and Excerpts re LvPPA (Logopenic varient of Primary Progressive Aphasia) at >> https://truthfulkindness.com/about/d-info/variants-ppa/excerpts-sx-lvppa/ ;

… and that is it for new “pages” although i have posted four new “entries” this month;
06Mar2022 was “Care-Partnering is a Three-Legged Stool” at >> https://truthfulkindness.com/2022/03/06/care-partnering-stool/ .
13Mar2022 was “Living Well with Dementia” at >> https://truthfulkindness.com/2022/03/13/living-well-with-dementia/ .
20Mar2022 was “Appearance of ‘Lying” at >> https://truthfulkindness.com/2022/03/20/appearance-lying/ . and
27Mar2022 was “Taste Almost Gone” at >> https://truthfulkindness.com/2022/03/27/food-taste/ .

New Art:

//embedr.flickr.com/assets/client-code.js 14Mar2022; i see that i signed it with the wrong date, LOL !!! Clicking on the picture above will take you to HiRes copy of this “Growth Thru Tears” digital Painting at my Flickr Acct. From there, you can see details on creating the painting, and if you click on picture, you can see greater detail of the painting itself. https://flic.kr/p/2n8ESXt . Have not used it in any blog entries or pages … yet …

//embedr.flickr.com/assets/client-code.js 01Mar2022; Clicking on the picture above will take you to HiRes copy of this “Three-Legged Stool” digital Painting at my Flickr Acct. From there, you can see details on creating the painting, and if you click on picture, you can see greater detail of the painting itself. https://flic.kr/p/2n6tHp6 . Used in “Care-Partnering is a Three-Legged Stool” at https://truthfulkindness.com/2022/03/06/care-partnering-stool/ .

Both of these above art projects began with a “Silk” project, then was enhanced with ProCreate, and finalized with help from “raise” tool in iColorama. More info on “Silk” application at this page >> https://truthfulkindness.com/about/life-other/arts-crafts/apps/silk/ .

* Admin issues:

Taste part 3: Food Taste Almost Gone

Posted on March 27, 2022 by Truthful Kindness

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.
“Smell and taste are often reduced in dementia.” — Psych Today 07Mar2021. Tru here discussing loss of taste for food. The medical term for complete loss of taste is ageusia. There is also a partial loss of taste, or unpleasant perception of taste, called dysgeusia.

For ME, loss of taste was a gradual thing. The first taste i lost was that yeast-y taste from doughnuts and some ultra-fluffy breads. After a life-time love-affair with doughnuts, these yeast wonders were no longer worth even periodic break in my gluten-free way of life (due to Celiac). The anticipation was there, but no reality and fulfillment of the anticipation when i actually ate a doughnut. That began about 2018.

Next big noticeable taste lost was CHOCOLATE ! Baking chocolate is still one of the primary ingredients that go to make my high-protein drink. The mouth-feel of hot chocolate is incredibly comforting for me, even though i quit tasting it in 2020.

By early 2021, i noticed that any Leftovers usually tasted like cardboard. That included poultry and beef (i dont eat pork), and most vegetables. But at that time i could still taste almost all spices, so corned beef, bar-be-cue sauce, and condiments really helped the taste issue for eating food. … and i could still taste many fruits. By the end of 2021, i had lost the taste for the yummy things in fruit tho. The only remaining taste was acidic and yucky.

Now (2022). i have basically lost all taste, freshly cooked or Leftovers. Meats (and fish), Vegetables, Fruits, and even my biggie — Dairy. i have always been a milk baby, and that was a crushing loss — along with, of course, ice cream !!! i can still taste (or FEEL ?) the vinegar in catsup and mustard — but they have no difference to each other.

Cardboard; i eat sometimes sweet or salty “cardboard”, (CaramelCorn) but all food tastes like cardboard.

Probably not considered “food”, but i can still taste a few pretend flavors — like some of the crystal light water flavors. So that is very helpful – for as long as it lasts. Update Apr2022: Crystal Light Lemonaid flavor is now distorted and yucky, but Sunrise Orange still tastes good, and can be used in cooking also. Update Monday morning 06Jun2022: i had an event this morning and now Sunrise Orange flavor is also distorted and yucky — i taste something, but it certainly is not good. However, have discovered “Black cherry herbal tea” still tastes good. Funny that in each of these cases, the actual fresh fruit taste was distorted BEFORE the pretend flavor for that fruit. i wonder if that is consistent among folks who lose taste sensation ?????

This is a big loss, and i am allowing myself to grieve. Mostly, no; i dont even remember the tastes, but i remember the feelings that accompany eating these foods. The wonder of a doughnut, and the exotic notes of pineapple. Unfortunately eating is much more WORK now that there is no taste,

Also, each bite is a fresh, brand-new disappointment, because
even though i rationally know that i will not taste anything,
i am still Looking for a taste with each bite, and there is
… nothing.

… But now, as always, i need to re-focus on what remains, instead of what is lost.

Since taste is no longer an issue, most of my foods can go in my fingers or a mug.
… and no need for variety, because i have no memory of what i ate on previous days (or even today, LOL).
i am drinking more of my protein drink, but still sitting at table with husband.

COMFORT Food:
The mouth-feel of chocolate, and
the feeling of milk coating my throat and stomach.
These are things that remain, and still bring comfort.

Borscht is a banquet of textures, and Broccoli Bisque is ever-so-smooth with creamy green thickness. Both are brightly colored, and easily eaten from a mug. So these vegetable soups are my main foods, other than my protein drink mixture.

LINKS:

“Smell and taste are often reduced in dementia.” — Psych Today 07Mar2021 by neurologist Andrew Budson MD at >> https://www.psychologytoday.com/us/blog/managing-your-memory/202103/when-dementia-diminishes-smell-and-taste ;

Also see Nov2021 >> https://www.ncbi.nlm.nih.gov/books/NBK549775/ ;

Taste part 1: Loss of Smells and Taste at https://truthfulkindness.com/2021/08/08/re-heated-taste/ ;

Taste part 2: Re-Heated Taste at https://truthfulkindness.com/2021/08/08/re-heated-taste/ ;

Taste part 3: Taste Almost Gone at https://truthfulkindness.com/2022/03/27/food-taste/ .

… and you might want to check out the “FOOD” Links gathered for Dementia Symptoms and Strategies (alphabetized) at https://truthfulkindness.com/about/d-info/links-sx-strategies/. This includes my past entries on this topic, along with “Food” entries from Agnes Houston, Barry Pankhurst, Greg O’Brien, retired doctor Jennifer Bute, and Susan Suchan.

* 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 my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness on27Mar2022. Ice cream cone picture by StockSnap at PixaBay >> https://pixabay.com/photos/ice-cream-dessert-sweet-food-2588541/. Coffee cup painting “Runneth Over” Psa 23:5 is by my daughter C.M. Blessing ((Thank you again, Sweetheart)) .
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: ageusia, alzheimers, comfort, dementia, dysgeusia, food, person with dementia, PLwD, symptoms, taste. S&S categ: food.

Appearance of “Lying”

Posted on March 20, 2022 by Truthful Kindness

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.
Tru here, in answer to a question about why persons with dementia “Lie” so much.
Not really any suggestions, but i can give some insight into WHY it appears that it happens (so that you can better create strategies that can help in your specific situation).

Due to hallucinations, fantasy (like “Arthur; the sea dragon in space” digital painting above) can become our reality,
… but so can Horror (Almost all of my hallucinations are horror).

In some of my nocturnal hallucinations, family members and FaceBook friends do and say things that are selfish and cruel.
i make every effort to separate (this NON-reality that feels more real-than-real) from my day-to-day attitudes and behaviors
— because the rational side of my brain TEMPORARILY knows those things were hallucination,
but it is difficult not to APPLY them as consensus reality,
because hallucination memories and consensus reality memories can easily become merged.
((In fact, since nocturnal hallucinations are SO very vivid, they are often more memorable than consensus reality)).

Also, most people have things that they do not wish to remember, but with those of us who have memory loss that often becomes fact.
And our memory of actual (non-hallucinatory) events can be distorted.

With my grandmother her last couple years were very influenced by events that her childhood emotions had not fully dealt with.
i suspect that experience might be a frequent occurrence with others in late stages.

***

Five minutes after my mother calls on the phone, husband will ask “how is your mom?”.
At my CURRENT normal i can answer “i dont remember, but i am sure she is doing well”.
… HOWEVER, i have seen this journey from two grandmothers, and i know that eventually i will not realize that i do not remember, and will simply answer that “she is doing well”.

When great-grandma lived with us there was no such thing as an early diagnosis,
her perceptions and memories were inaccurate,
and it was all-too-easy to feel she was “lying”.
i so much wish that i knew then what i know now
(as a person seeing others and experiencing early stages of dementia myself).

Another aspect to consider is that some of us have sensory hallucinations. My hallucinations are primarily of sound and smell, but occasionally visual. There are times that i am SURE a radio is on somewhere, interfering with my concentration. But husband insists there is no radio. My nocturnal hallucinations often set the tone for my day, and sometimes those (hallucination) events are considered factual in my day-to-day experience.
((See Impact of Nocturnal Hallucinations by Truthful Kindness at https://truthfulkindness.com/2016/01/19/impact-terrors-dreams/ )). If asked about those events i am NOT lying; instead i am giving my version of the TRUTH !

i think when a Person Living with Dementia says something that is untrue in all others’ perceptions,
i believe it is sometimes a lie,
BUT it totally depends on whether that particular person used untruth as a coping mechanism BEFORE dementia.
If they were basically a truthful person before dementia,
then those untruths are most probably NOT lies;
they are REALITY for those of us who are living with dementia symptoms.
Big difference, and prior personality is what tells the difference.
.

Barbara Parker Brown (on Mon 06Dec2021) “Can it really be lying if we think it is the truth?” … (on Mon 06Dec2021) “yes, you may use it.” (in blog entry)

— *** —

LINKS; Remember, Links are in colored text, NOT the pictures.

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

* 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 my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness on20Mar2022. (Began this article 03Dec2021 and invested >9 hrs on text … before posting it on 20Mar2022). Digital painting “Arthur the Sea Dragon in Space” using “Fluid” first, then ProCreate default brushes, copyright Truthful Kindness on 13Nov2021.
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, communication, dementia, person with dementia, PLwD, reality, relationship, symptoms, truth. S&S categ: commun.

“Living Well” with Dementia

Posted on March 13, 2022 by Truthful Kindness

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 is on Vocabulary: several friends Lament that they are no longer “Living well” with their dementia.

I think each person is different. We each define “Living Well” for ourselves. Each one of us living with “the” condition (whatever that dys-abling condition is) should be able to define the term for themselves.

Discussing semantics can be so very complicated because meanings of words have so many differences due to culture, location, etc. Especially, i think our perception can be colored by who we spend time with; if those persons are Persons Living with Dementia – but in EARLIER stages, then i think our self-image is more colored by our decline.

Because i am having such difficulty finding any strategies that still work for myself,
when a friend despairs “I am no longer living ‘well’ with my dementia”,
i understand exactly what they are feeling.

They feel like failures even in the environment of their dementia friends.
They may have more than mild word-finding problems; they might have difficulty finding even one of the words to START expressing their feelings (like me). They may have not understand much of what is said by their friends with dementia (like me). Their ability with iADLs may have mostly disappeared, and ADLs (Activities of Daily Living) may be strongly changing. They might be beginning dressing problems and toilet issues (like me) — or even more visible problems. They may have a problem controlling saliva on their face, or have incontinence issues that are embarrassing, etc. In my eyes, they have very high value regardless of whether they can still manage any of our standard “strategies”; regardless of remaining abilities. It is sad when even dealing with our symptoms becomes a value judgement of how we use strategies and what our current body-control is like.

— *** —

Being asked this question was disconcerting for me;

“”Is that person actually living WELL with dementia??””

One of the first times I heard the phrase “Living Well with Dementia” it was a judgement of whether someone ELSE was “Living Well”.
The speaker was not dealing with dementia symptoms themselves and it was a form of judgement; a decision-making tool for whether they wanted to share the project from a Person Living with Dementia.
That is one of my misgivings about the phrase “Living WELL with dementia”.

— *** —

My friend, in my own perception
YOU continue to live “well” with dementia
because you are thankful for the moments;
you have not “given up” on being YOU (in whatever methods you still have the ability to live out those values) and living life.
In my perception you ARE Living Well with Dementia
… just with another – much more restricted “New Normal”.

— *** —

LINKS; Remember, Links are in colored text, NOT the pictures.

Some known Dementia stages and scales are at >> https://truthfulkindness.com/2021/06/02/dementia-stages-and-inconsistencies/ ;

… 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/.

* 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 my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness on13Mar2022. (Began this article 28Jun2019, investing 12hrs before posting it on 13Mar2022). Digital painting using ProCreate and Acrylic Pour brushes from Alaina Jensen, copyright Truthful Kindness on 10Mar2022.
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, living well, person with dementia, PLwD, strategy, symptoms, terms. S&S categ: terms.

Care-Partnering is a Three-Legged Stool

Posted on March 6, 2022 by Truthful Kindness

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PROBABLY, one person will not be able to meet all the future needs of Person Living with Dementia (aka “PLwD”), just as a two-legged stool cannot hold you up very well unless you have something to balance against.

One leg of the stool needs to be the input from Person Living with Dementia; please allow us to have input on our own care. After all it is our body, our personality, and our personhood at stake.

Second leg is primary care-partner (aka “caregiver”, but i do not like that name very much). Gradually becomes crucial in every element of care.

… but THIRD leg of the stool is an alternate care-partner, available to supply respite-care during self-care for primary care-partner (ie doctor appointments, a soak in the tub, a walk outside alone or with friends, bible study or meditation, urgent medical needs, etc). i have seen this as crucial in care of others, and would really like to see it established for myself (as person needing care).

If at all possible, it is important to establish this third means of care support in the earlier stages of dementia progression, because can be more difficult in mid-to-late stages. Change is difficult for EVERYONE — but especially difficult for Persons Living with Dementia (aka PLwD), thus it can become traumatic for both Person Living with Dementia and primary care-partner . We are reliant on patterns and routine to make our adaptive strategies work, and having a different person with us is a dramatic change; different ATTITUDES, different voice, different way of touching us, etc. So might require many visits from third care-partner to even begin the adaptive process.

Another point is that i would REALLY like the alternative care-partner for ME to read my blog entries in “crucial” folder (at >> https://truthfulkindness.com/category/important/crucial/ ) and my “Favorites” at https://truthfulkindness.com/about/about-me/favorites/ .

LINKS; Remember, Links are in colored text, NOT the pictures.

Suggestions for “In-Home Care” by Truthful Kindness at >> https://truthfulkindness.com/2021/06/27/in-hm-care/ ;

… 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/.

* 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 my neurologist said I am in a unique position for helping because I have “one foot in each door”.
Text Copyright © Truthful L. Kindness on 6Mar2022. Digital Painting copyright Truthful Kindness on 01Mar2022. This was probably the quickest art project i have done in a very long time — only 4hrs. Digital art using “silk” application then default ProCreate brushes, copyright Truthful Kindness on 01Mar2022
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, care, caregiver, dementia, person with dementia, PLwD, strategy, symptoms. S&S categ: caregiver .

February Pages

Posted on February 28, 2022 by Truthful Kindness

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.
In addition to any blog “entries” during February, Word Press has blog “pages” (which go into different categories at the top of the window). This particular entry is Links for pages posted and Art Projects during February.

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

. (no pages from dementia friends during February, but book reviews contain books from friends).

Misc Pages:

Book Reviews on Dementia Issues at >> https://truthfulkindness.com/about/about-me/favorites/book-dementia-issues/ ;

Revised “Come Near” (in Spiritual Journal) at >> https://truthfulkindness.com/about/life-other/spiritual/non-dimenticar-near/ ;

Arts & Crafts Projects:

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Used in page of Spiritual Journal.

Anticipation:

i have been working on series re-visiting communication issues, and it is possible the first category will be finished in March. Also working on

“More Toilet Issues” and “Care-Partnering is a three-legged stool”.

Blog ENTRIES this month were:

This month’s blog entries were on

Anhedonia (lack-of-Pleasure) at >> https://truthfulkindness.com/2022/02/07/anhedonia-dementia/ ,

Praise of Care-Partner at >> https://truthfulkindness.com/2022/02/14/praise-care-partner/ ,

Clothing Strategies at >> https://truthfulkindness.com/2022/02/20/clothing-strategies/ and

Swiss Cheese Analogy at >> https://truthfulkindness.com/2022/02/27/swiss-cheese-analogy/ .

* 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 my neurologist said I am in a unique position for helping because I have “one foot in each door”.
Text Copyright © Truthful L. Kindness on 28Feb2022. Digital painting copyright Truthful Kindness on 27Feb2022 (finished drawing for the heart on 17Feb2022 and no idea how many hours invested, but i am still not satisfied with it). Procreate project on iPad using Apple Pencil and alcohol ink brushes by Alaina Jensen, then put it thru iColorama “raise” process to better show the brushstrokes.
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 .

Person with Dementia Symptoms

Please pass on Dementia Awareness by Sharing:

Let it go!

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

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

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

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

Misc Pages:

Arts & Crafts Projects:

Anticipation:

Please pass on Dementia Awareness by Sharing: