More Toilet Issues

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

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

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

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

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

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

 

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

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

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Links:

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

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

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

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

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

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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. I have cerebrovascular disease and symptoms of Lewy Body Dementia, but my current diagnosis is still MCI “Mild Cognitive Impairment”.  This entry has been in process since Feb2022.  Text Copyright © Truthful L. Kindness on 03Apr2022, but i was unable to connect the other video until 01Dec2022, so posted 04Dec2022.  .Toilet Smiley is 138kb PixaBay copyright by Alexas_Fotos (#3298205).  Permission from Susan MM at https://www.facebook.com/groups/560722000739111/posts/2804327539711868/i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: alzheimers, bathroom, dementia, hygiene, person with dementia, PLwD, poop, strategy, symptoms, toilet .  S&S categ: hygiene .

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Helpful Gifts for Persons Living with Dementia symptoms

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.This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at  http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words.  Like some of my other recent blog entries, this one had a lot of suggestions from husband/care-partner.

Many folks start thinking about gift-giving in October and November.  When finding a gift for a person living with dementia, often one of the thoughts is a “helpful” gift.  Of course choosing a “helpful” gift is very dependent on several factors: past interests, preferences, and talents of the person living with dementia, and their current and expected symptoms and Dys-Abilities (so it helps to know which typeS of dementia are involved in personal “dementia-mix” of the person for whom you are buying).

Off-the-Top: i was tech-savvy before dementia symptoms, so One of my most important tools in early-to-mid stages is my iPad. Primary purpose for this purchase of iPad Air was the “Stroke Stabilization” tool with Apple Pencil 2 and “ProCreate” art app; this allows compensation for my tremors, so that i can again do calligraphy and art that i enjoyed in earlier years.  But i also use the iPad in interpersonal connections (both text and video chat with family members and dementia friends, etc), music video, and other art applications such as “Silk”.  When i was stuck on the couch for months this iPad was indispensable.   .
******* iPad Air (mine is 4th generation, and if i need to replace it i might get one that is reconditioned ~$400) >> https://smile.amazon.com/Apple-iPad-10-9-inch-Wi-Fi-64GB/dp/B08NPH29YG , but personally i will probably use my iPad for a very long time, and i value the touch-sensitivity which might be decreased if past user had thumped the screen in frustration, dropped it several times, or all the various activities that can create interference with touch-sensitivity.  So my expensive brand-new purchase several years ago was well worth the expense.  i have replaced the $22 protective case, ( >> https://smile.amazon.com/gp/product/B08MDSGNL4/ ) but see no need to replace the iPad until Apple drops support and part-replacement for this product.  As shown below, i use iPad for several purposes. But caution; some folks never adapt to using this type of technology; we bought one for my mother, and she only used it when someone was there with her.  Living in rural town, that did not happen often enough to make it worth the purchase. Plus Mom is very much a moving-outside type of person, and never used technology much..
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Cooking:

Even in “Early-Stage”, i quickly lost the ability to use the stove.  To start with i had note on burner “BEFORE starting burner, turn on alarm for remembering to turn the stove off”, but after several years that technique no longer worked.  We thought of a pressure sensitive stove, that would turn off when there was no longer a pot or pan on the burner, but my cooking abilities quickly declined to the point that i could not cook anyway due to tremors, other memory complications, and fine motor control..
******* But other friends are able to stretch their cooking abilities using (~$20) rice-cooker — but make sure it actually turns itself off, and does not just stay warm for days, and (~$40-70) crock pot (which usually have a 4-6-8-hour process then turn themselves off automatically. Again, check and make sure the device actually turns itself off after the process.
******* i got a Vidalia Chop Wizard when tremors began interfering with using sharp knives, altho in many cases you must still cut the food at least in half before placing it on the cutting tool. This one is ~$23 >> https://smile.amazon.com/Vidalia-Chop-Wizard-67366-Large/dp/B000I6JZWA/ .  Husband bought another, since he now does all the cooking..
******* Began forgetting how to use potholders, so One of the things i did to extend my cooking abilities was purchase hand mits (~$23/ea).  Not long after that i gave up on cooking efforts, but these mitts now sit at microwave, so that if my mug or plate is too hot then i can quickly grab a glove or two.  >> https://smile.amazon.com/dp/B015T1WIKY/ref=twister_B016WMS2A4 ..
******* A couple friends with tremors have extended their cooking abilities by using “mesh” gloves.  These allow cutting of food without cutting hands. They appear to range $10-30.  i dont remember which friends, so i cannot ask which specific type of glove they use.  Here is an example, tho >> https://smile.amazon.com/Dowellife-Resistant-Stainless-Shucking-Mandoline/dp/B0963SBR1K/ .

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Lighting:

For ME and several of my dementia friends, dementia symptoms have created need for different types of lighting in our house.  Fortunate in that dementia symptoms had already begun when we were designing this Craftsman-style home, and change in lighting needs were much less intense, but they were beginning.  So we have built-in wall lamps every 8 to 12 feet all thru the home.  As afternoon progresses to evening these wall lamps (with lower-wattage incandescent bulbs) are turned on, creating less shadows as the outside light from our many windows dims, but still over-all lighting with less intensity -which allows for slow conditioning for sleep, but less evening mis-interpretation of visual signals.  By night, all the bright overhead lighting is off, and only the side-lights are on. i avoid TV or strong lighting for about two hours before bed — especially i avoid LED bulbs in those hours.  Lighting can strongly affect our natural melatonin — which triggers sleep.  We only have one fixture with LED (what i call “blue”) bulbs.  Mostly this type of lighting is very irritating for me, but some people with dementia dont seem to have much trouble with it.
******* So if we did not have this built-in side-lighting, then i would need standing floor Lamps and table Lamps, along with the the many Night Lights scattered around the house.  So Lamps and Night Lights might be a gift idea.  Personally i have a special spot in my heart for Octopus, so this is one of my ($30) choices >> https://smile.amazon.com/dp/B00EKKCI56/ ..
******* We lose power frequently in our part of the country, so “emergency” lighting is crucial to my well being (our camping lanterns seem to trigger either illusions or hallucinations, and flashlights intensify my disorientation so i am more likely to trip and fall).  There are many options out there, but we chose “Surge” for emergency light bulbs that come on when the power goes out. (~$80/pack of 4) >> https://surgebulbs.com/ .

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Interpersonal Connection:

*******  Travel is increasingly difficult for me.  Cell Phone is increasingly difficult for me.  With my vascular disease and Lewy Body symptoms, tremors are continually intensifying. Not only do tremors interfere with hitting the correct buttons, but even when i try to use my iPhone as a telephone there are problems.  After i get the right buttons, problems with my audio-processing and word finding make phone calls awkward and difficult at best.  So cell-phone is not used much any more. Now i use iPad Air or extra-large computer screen with the “Zoom” program for video chat with my sister or daughter, Peer chat with Dementia Mentors’ members and groups, and DAA (Dementia Action Alliance) groups.  i know that as cognitive symptoms advance i will need someone’s help to connect me into each video “chat”. >> https://zoom.us/ .  i use the paid zoom account so that i can have a default number which family enters to video chat, but there are also free accounts.  i also currently use iPad or computer for FaceBook texting peer groups (and other aspects listed below). . 
******* If i had a technology-savvy friend, they could hood me up for recording short videos to share my personal everyday experiences.  i learned to type early, and was typing for our home business before i was 10 years old, so typing and texting is currently better for me than talking, but i know those abilities are declining, and i am mostly beyond making videos right now, but some of my friends make video on regular basis. 
*******  With my lifelong love affair with written words, this letter-dice project might be good for me, BUT i think with my tremors i would have great difficulty maneuvering the smaller-size dice-letters; https://smile.amazon.com/TDC-Games-2550-Campbells-Alphabet/dp/B004W8P614/  (picture of letter dice saying “poop is not good to eat so flushit” with following remarks on one 14Dec2019 review: “My dad has Alzheimers and this little can of alphabets has been great. He will sit for hours and make up sentences like this one. The first day I got it for him this is what he spelled “Aware and scared to be me“. It brought me to tears. He’s in there. He has been expressing a lot of things with these letters. He tries to use all the letters in one sentence. He has come up with lots of cool stuff. My mom is in a skilled nursing facility and my dad spends the day visiting her and asks all day over and over when is she coming home. This helps occupy his mind. Totally worth every penny.”  …  i think for myself (Truthful Kindness) i would probably suggest several sets of this larger-sized variety of the idea (at ~$7/set) >> https://smile.amazon.com/Teacher-Created-Resources-Alphabet-TCR20704/dp/B07F21HWG8 .

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Memory Reminders:

  *******  Quite a few of my friends appreciate “Alexa” or “Echo” (especially those who still live alone), but for ME, my sound processing is distorted, and i also have aphasia-type symptoms, so those sound-based technologies do not work well for me.
******* Finding things: Several of my friends really value their Apple “Air Tag”.  They use them on many different items, but the problem is remembering to renew the batteries. >> https://www.hsn.com/products/apple-airtag-4-pack-bundle-with-keychains-luggage-tag-a/20195473 and (asked Jennifer Bute for the other Link 13Nov2022) . 
*******  My friend Tommy Dunne has been helpful in developing memory technology designed for People Living with Dementia >> https://www.bbc.com/news/uk-england-merseyside-29642804 .. 
*******  Personally, i have problems with digital clocks, and i am losing ability to predictably be able to read the analog clock, but there are clocks with ability to record message for each alarm set, which could be helpful for some persons living with dementia. The ones i have seen are digital clocks ~$50.  Here is an example >> https://smile.amazon.com/MedCenter-Interactive-Personalized-Reminder-Adapter/dp/B001DTYJ04/ .

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Where is my husband/care-partner ? :

******* On request, my Service Dog brings husband to me.  When husband is away from the house we have a large (chicken-shaped) chalkboard at the door, for him to write where he went if the car is gone.  But in the last few years it has not worked well for us.  So he took a ($13) 4×6 spiral notecards set, and used large marker to write common places that he might be (our friends Angie & Tom, Bank, Chicken Yard, Dentist, Front Yard, Garage, Groceries, etc) on individual cards, in alphabetical order, with plenty of cards between each written card so that more places can be added as needed.  he clips the corner of cards he has written on, so that he can more easily find which one he needs when leaving.  Flips the notecard spiral so that particular card is on top, and places it wherever i am (desk, couch, etc) when he leaves.  In future we might need to add stickers or graphics, but for now this works well.  >>  https://smile.amazon.com/1InTheOffice-Spiral-Index-Assorted-Colors/dp/B084BZV9YD .
******* My sister made me a tool that i mostly use during travel.  We use a different “Where is my husband” tool when at home, but this is my go-to strategy for travel.  When husband needs to leave me in the car, this roll-up chalkboard (left on the driver’s dashboard or seat) tells me where he went, when he expects to return, and what to do if i need to go potty while he is gone.  One chalkboard stays rolled up in the car door for this purpose, and another is in the travel bag for use while in motel room.  At request, my sister uses solid, or more adult-friendly fabrics for dementia friends (mine are purple, LOL).  >> http://www.sspecialgifts.com/Travel-Chalkboards_p_26.html .

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Personal Care

******* By 2021 i was having difficulty with “gadget” usage; many things require complicated simultaneous movements and brushing teeth, brushing hair, and wiping personal areas are some of those fine-movement tasks that i have problems with.  Figured i was still early enough that i could get used-to the vibration of electric toothbrush, but i was never able to adjust.  Now husband has bought me one of the cheaper electronic versions that has round-and-round section on top and then side-to-side section of bristles below.  Stilol unable to use it so husband cut off the lower section of bristles.  Now i need to wear ear plugs, but i can handle the vibration.  He says it was less than $15.. 
******* For brushing hair i got a brush that has a more round head, so i can simply hold the head of brush  with all my fingers (instead of the handle).  i now use this $7 brush and it is working great for me. Husband no longer needs to brush my hair unless there are complications.  You may be able to find a better round-head brush for no-handle use, or cut the handle off and file the edges – but this works for me now. >> https://smile.amazon.com/gp/product/B08SS6TBW4/ .. 

Travel and various Souvenirs or Memory-Markers:

In addition to the above “chalkboard” suggestion, these are related to travel and Memory-Markers
*******  Since travel is so difficult now, someday i would like to try Virtual Reality to “visit” birth-areas for some of my ancestors, because a dementia friend tried it and said it was great. 
*******  i do not travel well now, but have found stuffed animals to be MY best reminder of trips from the past.  i brought home a stuffed toy kookaburra bird that sings his “kookaburra song” from my trip to Australia (very irritating sound, but it does not last long and it makes me smile). Trip to aquarium containing special individual visit with octopus giving me “hickie” kisses — then a large stuffed octopus to remember the trip.  Trip to zoo containing special personalized visit with penguins then a large stuffed penguin to remember the trip.  ((cups break and do not have lids that are secure, photos are less “touchable”, and other souvenirs are less effective for me personally)).   i also have a small SOFT stuffed toy on dash of car, that i end up “petting” when extra-stressed like on the way or return trips to doctor. The home-based stuffed toys sit above my drawers in the bedroom, so that i see and touch them every day.
*******  My father knew that unconditional love is an assumption between father-child, so he often remarked to me, “Did you know i LIKE you?”  When my children came along i often reminded them in turn, “Did you know i like you?”.  One day in the grocery store, there was a 5″ stuffed mouse key fob with a “press me” tummy.  When tummy was pressed he squeaked “i like you. i just plain like you. you make me smile. …”.  Of course daughter bought it and gave it to me.  This mouse hangs by the front door and when grandsons were young  i would press the tummy when they arrived at the house, and they would listen to the mouse.  That mouse reminds my of my father, my daughter, … and grandsons.  https://youtu.be/wDTlblCE3PQ . .
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ART, Crafts and Music:

Crafts and art/Music for Early-stage symptoms:.
******* iPad Air (mine is 4th generation, and if i needed to replace it i would probably get one that is reconditioned ~$400) >> https://smile.amazon.com/Apple-iPad-10-9-inch-Wi-Fi-64GB/dp/B08NPH29YG , with Pro-Create art program (~$10), Apple2 pen (~$130), and funds for a couple special “brush” sets. >> https://procreate.art/ , Apple Pencil 2 >> https://smile.amazon.com/Apple-MU8F2AM-A-Pencil-Generation/dp/B07K1WWBJK/ , and although in some creations i have only used default “brushes”, my favorite brush sets are from Alaina Jensen.  i especially appreciate her brush collections with their demonstration videos. >> https://alainajensen.com/ .
******* Sizzix die-cutting machine (~$90), dies to cut with, and cardstock or scrapbook binder. https://smile.amazon.com/Sizzix-660200-Cutting-Embossing-Machine/dp/B00R50G1I8/ .  With my tremors this has become very difficult to use unless i use the magnetic plate to help with positioning the dies.  Cannot find what i personally use but this gives the concept (~$35) >> https://smile.amazon.com/Sizzix-Magnetic-Platform-656499-Multi/dp/B00DNUGVZW/ .
******* Lap Harp to help me “change channels” after hallucinations (until i lost the ability to keep it tuned) ~$263 >> https://smile.amazon.com/Mid-East-HNVL-Nevel-Harp-With/dp/B001D1WZ12/ ..
******* Audio without video is a problem for me, so mp3 doesnt work for ME, but i often use my iPad Air to watch music video.  My brain’s sound-processing is distorted so it can be difficult to avoid what my brain perceives as “noise” (even some of my best favorites from when i was younger, like big Band sounds from when i learned to dance before we taught ballroom dancing).  But i enjoy many “softer” videos on YouTube, so i have $120 YouTube Premium annual membership, along with  ear buds (for when i need to be able to hear if husband calls me) and headset (for when husband is nearby and can reach out and nudge me, so i do not need the ability to hear sounds other than the music).  >> https://www.youtube.com/premium .
*******  If the person you are finding a gift for does not yet have one, you could buy supplies and help them create a “LifeBook” for them (and if you are member of family make one of your own life that they can keep with them).  “Preserving Memories with a LifeBook” is short video from retired doctor Jennifer Bute (now living with dementia) >> https://vimeo.com/281260326 ..
*******  Another hand-made gift could be to take some favorite verses or songs, and help compile scrapbook pages for them.  i plan to do this for myself, creating my own version of “Ideals Publishing Company” type booklets with single page for each of my favorite poems or songs, but so far i never seem to find the time and energy (have enjoyed collecting pictures for them tho, with the different seasons and different topics, LOL).  i know that as my reading ability drops, these will be treasured.  i have collected many pictures for this project at >> https://www.flickr.com/photos/194191353@N04/galleries .

Crafts and Art/Music for Mid-stage symptoms:.
*******  Access to iPad with Apple2 pen and “Silk” drawing program (some aspects may need help with set-up, but this app is my go-to activity for evening).  >> https://truthfulkindness.com/about/life-other/arts-crafts/apps/silk/ .  .
*******  YouTube Premium membership ($120/yr) for my music and “atmospheric” videos.  YouTube Premium link is above with early-stage symptoms, but this is my go-to underwater reef video >> https://youtu.be/prfZFyp4XZk .  .
*******  “Ideals” magazines from thrift stores, e-bay, etc.  These combine brief prose with attractive pictures on a one-poem-per-page basis. >> https://www.thriftbooks.com/browse/?b.search=Ideals%20Publications%20Inc.#b.s=mostPopular-desc&b.p=1&b.pp=30&b.oos&b.tile . … and >> https://www.ebay.com/sch/i.html?_from=R40&_trksid=p2499334.m570.l1313&_nkw=ideals+magazine&_sacat=280  . 
*******  As mentioned above, i can no longer use my lap harp, so husband got me a Tongue drum to help me “change channels” after hallucinations (mine is called a “Hapi” drum and was ~$160). >> https://hapidrum.co/hapi-drum-mini  .
*******  supplies for composing cards or scrapbook pages (such as die-cuts, etc) AND someone to help me glue etc due to my extreme tremors.  This could also be a hand-crafted project, with YOU buying the Sizzix and cutting the pieces, then gifting those pieces to your friend or family member on the installment plan, along with card blanks (or index xtock for composing scrapbook page) and some time helping with the glue process (since many of us deal with tremors which can make problems with glue).  See the Sizzix details above in “early-stage” symptoms.

Crafts and Art/Music for Late-Stage symptoms (other than some of the mid-stage suggestions above):. 
*******  One dementia friend uses these (or something similar) with her later-stage friends, during their peer-group gatherings: https://smile.amazon.com/Relish-Memories-Aquapaint-Water-Painting/dp/B08HNG1ZSG .

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Comfort

******* i VERY much appreciate “touchable” larger crib-sized lap-blankets  (but each person has different preferences for textures and sizes they most appreciate). Some folks enjoy the “weighted” variety of lap blanket . 
*******  i dont need it because i have a care-partner who can oversee care for my (real) animal, but a couple friends enjoy those “robot” animals.  It has been mentioned that purr-therapy might be helpful for late stages; https://smile.amazon.com/Ageless-Innovation-Companion-Lifelike-Realistic/dp/B017JQQ01A/ and https://smile.amazon.com/dp/B0BKQ73KJZ/ .. 
*******  A couple of my dementia friends have entered the “doll-therapy” issue: “Doll-Babies” by retired doctor Jennifer Bute at https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/doll-babies/ ; and “Dolls” short video by Janice Crich at https://vimeo.com/281972383 ;

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Further suggestions:

Laurie Scherrer has listing of potential gifts at https://dementiadaze.com/2021/12/10/not-just-a-gift-give-a-memory/ .  i would love to hear additional examples.

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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; started this project in July, but © Truthful L. Kindness on 14Nov2022. 139kb picture “Blue Flowers in Glass Vase” by Nicole Wilcox; posted 20Jun2018 on UnSplash. >> https://unsplash.com/photos/Fg632J5h-hk .
***  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, gift, person with dementia, PLwD, symptoms, strategy.  S&S categ: gift, .

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Dementia and Seizure intro

.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/ .

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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).

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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.

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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 .

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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

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“… 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 .

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… 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

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. 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 )
autumn rain//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.

Poof!

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/ .

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… 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 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.

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((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

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. 

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.

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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.

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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 … ” .))

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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/ ;  

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… 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 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

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. 

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.

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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.

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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.

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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;

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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.

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March Pages Added

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.

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

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

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… 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/ .

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New Art:

TearSilkiC Tens 20220314//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 …

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threeLeggedStool 20220301a//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/ .

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but 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 30Mar2022. Picture copyright Truthful Kindness on 14Mar2022, using Alaina Jensen MultiMedia brushes in ProCreate app.  i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: na .  S&S categ: na .

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Taste part 3: Food Taste Almost Gone

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.

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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 ?????

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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.

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…  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.

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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/ ;

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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/ .

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… 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.

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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.

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Appearance of “Lying”

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).

Arthur 20211113

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).

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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 !

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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.
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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)

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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/.

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but 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.

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“Living Well” with Dementia

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.  

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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”.

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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/ ;

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

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* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”.  If you put your eMail address there you should get an eMail each time i write a blog entry.  Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** …  If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but 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.

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