Loss of Smells and Taste

UPDATE: i could still fully taste fruit when i began preparing this blog entry last week, but during the past week am losing the taste for fruit also … i just get brief tantalizing tastes of a moment of two … then another moment.  But all the in-between is lost.  … and instead of the complex realm of a specific taste (like strawberry) i am getting the acid but some of the other tastes are gone, which totally changes the way a strawberry tastes.  Tremendously discouraging … altho not too surprising.  ***

Tru here.

i have always been VERY oriented to smell. 
As a child, my nose was used for sniffing out ants and several other things in the household. 
as i got older it was my privilege to create personalized fragrances for family members. 
Then came dementia symptoms, and after years some changes in my ability to smell.

i noticed a few scents that no longer had ANY smell for me. 
First was spoiled meat of the venison-type about 6 years ago (~57 years old)
then i lost the smell for 3 of the essential oils used in my personal fragrance about 4 years ago.
… then this, that, and any-other-thing (including body odor and ants, LOL). 

Now (in 2021) there are few smells that i can actually discern.  i realize those particular smells are also probably on short-term borrowed list, so those smells are highly valued.

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… and the same is true with tastes. 
About 3 years ago i noticed that i no longer appreciated that wonderful yeast-y taste — the smell and taste were just GONE. 
Then about a year ago i lost the taste of CHOCOLATE.
Noted no smell or taste for chicken beginning the first week of March, and hamburger shortly afterward,
Now … MOST tastes are gone.
i cannot smell or taste the standard varieties of meat, or eggs, or cheese, or gluten-free bread, etc
— but i can still smell and taste raisins, mandarin oranges, and strawberries.  

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So the main thing i still have is TEXTURE, and sensations of Sweet and Salty, along with dwindling taste for fruits.
i still enjoy the rough specific-ness of thick-cut oats (even though i no longer taste the oats) — so i add a few more raisins. 
i no longer TASTE the soup, but i still enjoy the wonderful combination of textures when my thick cauliflower soup is combined with hamburger crumbles., etc. 
i cannot taste the chocolate or the coffee in my coffee-chocolate protein drink, but
we still add the coffee because i get a brief after-taste of the cold-brew (not bitter)
and we still add the chocolate because i like the creamy smoothness of TEXTURE.

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This is a huge change of focus in eating, but it is also time to decide..

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Continue as before … OR make changes.

On special times (like breakfasts with Dad, after spending the night with him on the train engine) i would eat rich french toast made with thick-cut slices of bread or fluffy waffles.  Either were topped with hot fresh apple sauce and cold ice cream.  i have denied myself foods like this for about 10 years – because i have celiac disease and also going for the Keto LifeStyle (which better fits with my high needs for protein).  … But now i am quickly losing the receptors for tastes.

if i had known that i was this close to losing all taste sensations in the dementia process, i think i would have splurged more often in the past two or three years. 

if i had it to do over again, after losing 2 or 3 tastes, i would probably get glutened (on purpose) and start ENJOYING those tastes while i still had the ability to enjoy them (even at the cost of substantial gluten discomfort).  i realize the gluten TEMPORARILY intensifies cognitive symptoms for those with celiac disease … but this way i totally missed out on those tastes.

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So i have decided to get glutened AND splurge with blood sugar (within certain boundaries). 
it is time for evaluation of which tastes i am still able to enjoy – including those tastes from foods with gluten. 
Then i can better decide how often i will balance Best Practices … with taste desires.

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Wrote the above on May 16 and 17May 
PS after being glutened: 
17May2021: Cannot taste anything of pizza, except the pineapple; no taste of crust, tomato paste, cheese, italian seasonings spices, etc.  
17May2021: Discovered i cannot SMELL corned beef (which strongly reduces the taste, and mostly cannot taste it, but in the very far corner of right side, i can taste corned beef very fleetingly. 
18May2021 now losing taste for raisins; just taste very briefly after 3rd bite … then taste is gone again. So frustrating because i could taste them well a few days ago. 
18May2021 can taste something in SloppyJoes, but for very few moments. 
19May2021 can taste something in Grilled Cheese sandwiches (maybe the butter??) and creamy Campbell’s Tomato Soup (seasonings??).
20May2021 Absolutely no taste left in my Coffee/Chocolate protein drink — but i still like creamy texture and temperature. 
21May2021 Strawberry taste has changed from 2 weeks ago; no longer able to taste the good part, and most of what is left is an acid-type taste. 
21May2021 No taste of French Toast.  No taste to whipped cream — texture but no taste.  And no taste to sugar-free syrup. 
21May2021 Able to taste the sauté onions in Corned Beef hash with Sweet Potatoes. 
22May2021 Able to taste Mashed potatoes from Finger Gold Potatoes WITH peels
22May2021 Able to taste the gravy with flour, smoke flavor, garlic, sage, and Campbells’ French Onion Soup. 
23May2021 Able to taste smoked beef ribs made with hickory and rosemary.
03Jun2021 Able to taste Ranch Dip, but not much of Reuben Sandwich or french fries.
04Jun2021 Able to taste huckleberry jam and condensed Peanut Butter powder.
05Jun2021 Able to taste BBQ Salmon with Asparagus.
08Jun2021 i was able to taste BBQ steak. 
13Jun2021 Able to taste various fruit IF similar fruits are gathered together; cannot taste ONE grape, but THREE grapes i can taste.  14Jun2021 Able to taste corn tortillas and corn on the cob.  15Jun2021 Distorted grape taste today.

Jul2021 Able to taste Ritz Crackers, Golden Grahams (dry cereal) and Corn Chips.  Able to taste Yellow Cake Mix (turned into tropical fruit upside-down cake) for breakfast. Able to taste corn-on-the-cob..

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LINKS:

Fragrance Craft and my Nose at >> https://truthfulkindness.com/2016/10/28/fragrance-craft-and-my-nose/

Sensor for Body Odor at >> https://truthfulkindness.com/2018/03/26/sensor4-body-odor/

from a doctor >> https://www.psychologytoday.com/us/blog/managing-your-memory/202103/when-dementia-diminishes-smell-and-taste

Might check out “Food/Eating” category of my favorite Links for strategies, alphabetically by symptoms 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 on 23May2021.   .  Chocolate cake and strawberries photo by Draws And Cooks on PixaBay at https://pixabay.com/photos/cake-chocolate-cute-eat-food-2856551/ . Tags, alzheimers, dementia, eating, food, person with dementia, PLwD, smell, strategy, symptoms, taste.

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Early Swallowing Problems

Tru here.

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i have been dealing with slowly progressing dementia symptoms for over 20 years now.  New symptoms are always traumatic.

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… in past week have noticed unpredictable problems swallowing.  Not at any specific time of day, etc.
First it was SOMETIMES when swallowing pills, then sometimes when swallowing just a hot or cold drink with nothing added. 
In my case, the drink is not “stuck” in the throat, instead, i am unable to trigger the muscles to begin a “swallow” routine.

For ME right NOW, swallow problems happen when i am trying to do something else at the same time

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A few moments ago i got up from sitting position and realized urgent need to go to the bathroom, but i was also trying to swallow the drink that was already in my mouth. 
Trying to hold the pee in … while swallowing … did not work so well.

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So my husband told me that i am functioning better than 80% of the population;
he said “Dont be so hard on yourself.  You are trying to do 3 things at one time. 
1) Walk to bathroom 
2) Hold in the pee
3) swallow the drink in my mouth. 

— He thinks i am doing exceptionally well, because most people cannot walk to the bathroom and hold the pee in, let alone do something else at the same time.  ((LOL))

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 ***  in the future, i will try to make sure i am not trying to do anything else (at the same time) BEFORE i put the drink in my mouth.

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Difficulty in swallowing is called “Dysphagia” >> https://en.wikipedia.org/wiki/Dysphagia .

VeryWellHealth mentions on DysphaGia and DysphaSia (impaired Language) ; “Both of these conditions are caused by neurological damage to the brain that comes from an injury or a stroke. Both dysphagia and dysphasia are treated by speech therapists and both have to do with a person’s ability to control muscles in the mouth and throat.  >> https://www.verywellhealth.com/first-aid-phraseology-dysphagia-vs-dysphasia-1298200 .  i realize that may be a bit too generalized, but here is a Link with much more detail >> https://gi.org/topics/dysphagia/ .

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… you might also want to check the “Swallowing” section of my favorite Links for strategies, alphabetically by symptoms 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 on 16May2021. Throat graphic from Nehemie at CleanPNG; https://www.cleanpng.com/png-sore-throat-pharyngitis-clip-art-sore-1546542/;  .   Tags, alzheimers, dementia, dysphagia, person with dementia, PLwD, strategy, swallowing, symptoms, throat.

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Color as Strategy

Tru here.  In answer to a question about bathrooms.

Those of us living with dementia have big problems with both guessing distance/range and seeing color on same color.

THANK you for trying to find out the WHY of what is happening. !  
As Persons Living with Dementia (PLwD) our brain is dying.
We are in the earlier phases of brain-failure, and the brain processes visual data as well as every other sense. 

What our eyes see is interpreted by the brain,
and this is probably a brain-failure issue.

Your Loved One NEEDS to have the bathroom door a different color than walls; possible problem of distance perception.  It is surprising how many of us have nightmares of not being able to find the bathroom door.

He needs to have toilet and toilet seat a different color than the floor and walls; again a distance perception issue. Otherwise eventually he will not even be able to FIND the toilet, let alone lose his marksmanship.  

Same is true of plates on the table; very beneficial to have plate different color than the table (or tablecloth). And it helps to have trash bins a different color too.
Several folks have insisted that their loved one throws trash on the floor out of anger, and that is POSSIBLE, but unless the care-PARTNER is actively researching why we (as PLwD) do things, it is very easy to blame .

Personally i still have a bit of distance perception remaining, but it is going fast;
i dont realize i am setting my mug on the very edges of table (because placement of the “edge” is all wonky).
My “estimator” for everything from where the corner of the wall/door is, to time needed to dress for an event is broken (probably because requires CONTEXT of past experiences, and that is all going haywire).

Important to remember that your Loved One’s abilities are changing, and it feels like as soon as we get some strategies in place to help a specific symptom, then our brain deteriorates more and that strategy becomes less effective, and needs adjustment.

Husband says “New strategies need to be developed constantly; keep your strategies current, for which specific issues you are dealing with.”
Symptoms change, and those constant changes feel like walking a tightrope every single minute of every single day. 
i know it is exhausting for care partner, but it is also extremely exhausting for Person Living with Dementia (PLwD).

 

.LINKS:

retired doctor Jennifer Bute vid at https://vimeo.com/228785408

2-min vid by Norman MacNamara at https://vimeo.com/108706946 ; 

… and of course my Link Listing for strategies, alphabetically by symptoms 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 on 2May2021, with 5hrs invested.  .Ladybug Photo by Denis Doukhan on PixaBay at https://pixabay.com/photos/raindrops-leaves-ladybug-574971/ .   Tags, alzheimers, caregiver, color, dementia, distance, home, perception, person with dementia, PLwD, strategy, symptoms, vision .

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April Pages 2021

Tru here, with pages added on my website during April.

 

 !!  Remember, Links are in 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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Admin Pages are below.

Links on Dementia Diagnosis issues at https://truthfulkindness.com/about/d-info/links-sx-strategies/links-on-dementia-diagnosis-issues/

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Dementia Symptom Perspectives’ Pages:

Harry Urban with “Bridge Between Two Worlds” at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/bridge-2worlds/

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Michelle Montgomery “Preparing with Song” at https://truthfulkindness.com/index-persons-with-dementia-pwd/michelle-montgomery/preparing-with-song/ ;

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Family History Pages:

Petrin< Wester: “Earliest Wester on Tree” at https://truthfulkindness.com/about/life-other/family-history-index/earliest-wester-on-tree/ ;

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Where are You?

Tru here.

…  All i know is that i am alone with no idea of when SOMEONE will return …

Even if husband is simply taking a shower (in Garage), or a nap (in the bedroom)
i constantly forget where my husband said he was going.

i have no concept of time passage, so i dont know whether he has been gone for just a few minutes, more than an hour, or all day. 
This can be a frequent cause of anxiety.
When i start checking places where he might be, then i forget which rooms, or areas of our property that i have already checked
… and i am checking them over and over again, but not checking the one place he IS.

i am alone.

…  All i know is that i am alone with no idea of when SOMEONE will return …

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So i need simple frequent reminder for my memory. 
Husband took a spiral pack of note cards.  (( https://www.amazon.com/Bazic-Spiral-Ruled-Index-Card/dp/B00NABR7LQ )).
Alphabetically, on separate pages, the spiral has various places he might be; Chicken Yard (which is in the far back of our property), Front Yard, Garage, Grocery Store, Hardware Store, Nap, Pharmacy, Shower (in Garage), WellHouse (south end of property), etc.
Because we add additional locations frequently, we intentionally left blank pages between locations.  This allows all entries to be alphabetical.

Eventually WE will need to add picture for each word (and i think this would be a good thing to do together), but this works at my current “normal”. 
He sets the spiral at my workdesk, so that every time i look up, i see the card showing where he is. 
This has worked well for several years (as long as we remember to use it, LOL).

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We use the same strategy when traveling even to the bank or grocery store.  My sister made a cloth-backed chalkboard, that stays rolled up in the passenger door.  If i am left in the car, or in the hotel room, he writes where he has gone.  When i am feeling my most clingy, then he will also write the time for his return.  >> http://www.sspecialgifts.com/Travel-Chalkboards_p_26.html .

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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 25Apr2021.  shower pic from Openicon at PixaBay, then i added water drops on top.  Tags, alzheimers, anxiety, caregiver, communication, dementia, memory, person with dementia, PLwD, reminder, strategy, symptoms, tips

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Money Control with Dementia

Tru here, with my own experiences on negotiation of Money and HouseHold Finance issues.

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i worked in Accounting, and husband and i had worked together building money-management confidence for years before dementia entered the picture,
but with my dementia symptoms:

i dont remember which bills have been paid, and which bills have not been paid. 
we had a wonderful system that i was able to handle for several years despite mild dementia symptoms,
… but then could not remember where to find records, or HOW to work my system. 
So now someone else needs to do all of that.

i dont remember buying things, and i dont remember receiving things … so sometimes i buy the same things AGAIN.

i am not an impulsive buyer — but now there are more exceptions to that rule.  

i have always been very thrifty, and i am aware that the above symptoms can create disaster. 


Additionally, Money can be a big-ticket item in relationship,
and i do not want that to interfere with our partnership.

 

Financial security is very important to me, however i recognize my lack of money-management skills, therefore, at MY request,
My name is no longer on any of the “Family” bank accounts.
But this is a problem because Art and Crafting is a HUGE outlet for me, and I very much hate asking for permission to buy crafting supplies.

… SOOoo i have a (Low-Limit) credit card that is just for me, but Limit was negotiated between partners.
i dont travel, but i use it onLine (Amazon) so that i can feel that i have some choices:  
i can donate for personal causes without asking permission from anyone. 
I buy my own specialty foods. 
I buy supplies for crafting.   

The bank sends eMail to our JOINT e-mail each time a purchase is made, so that my husband can keep an eye on household finances.  Card holder determines which eMail the bank sends notifications to.  In our case, receipt is sent to the family eMail which is set to go to BOTH my husband’s and my own phone.  ((We have one eMail address associated for both of our iPhones.))   This helps us both feel confident that we are staying within agreed boundaries.  This has worked well and, because of the trust that we have developed, we have no problems with our money partnership.

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LINKS:

Math Problems by Truthful Kindness at https://truthfulkindness.com/2015/10/27/symptom-math-problems/ ;

vid by Barry Pankhurst at https://vimeo.com/112595471 ;

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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 11Apr2021, with 8hrs invested.  Arm Wrestling graphic by Peggy_Marco on PixaBay, then i added the money bags.  tags: banking, dementia, financial, insurance, money, organization, person with dementia, PLwD, relationship, strategy, symptoms .

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About Visits

.Tru here.

i would like to spend time with family and friends, but …

Needs to be mostly at my home, because “unfamiliar” places bring more symptoms and extra fatigue.

Needs to be only a few visitors at a time (3 or less for me with my current “normal”) because extra people moving around “scatter” my thoughts too much.

Covid: Since covid often hits those with dementia tremendously hard (over 25% of the covid deaths in UK were folks with dementia), probably need to set up agreed covid parameters for the visit.

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TIMING: 

Time-of-Day is an important aspect of visiting.  What are YOUR best hours for visiting??
… mine are in the morning, because later in the day my fatigue can make communication much more difficult; understanding words becomes more of a problem, as well as finding my own words to speak.
Personally, i always take a nap to extend my abilities, so 11am to 1pm will usually find me pretty sleepy also.

For ME, If inside the house, then needs to be short visit — no more than an hour at a time, with my current “normal”, unless extenuating circumstances.
Outdoors visits can be longer, if i have the option to disappear into an “alone” space for extended periods of time.

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Noise:

For ME, i need to have no other sounds going on in the room if indoors  — no music PLEASE if we want to talk.  No simultaneous conversations.
My brain has lost the ability to prioritize sound for what is important and what is not important.
There is no such thing as “background” noise.

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Dementia Awareness: 

Would be good if visitors could remember that dementia is brain failure, and Brain Failure is a progressive condition.  Each “normal” will decline with time to a “new normal”, and need changes on strategies that have worked in the past.
… This repeats over and over again as conditions change.

There are a few solid constants in life, but most aspects of life change with time; that is just how it is with life on earth.  Please learn a bit about dementia symptoms and strategies, so that i am not the only one trying to make adaptations.  Check out the Links at the bottom of this article.

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.  Recognizing Visitors:

My husband knows i mostly do not recognize the way he LOOKS (because i am looking for the younger man i married), but if he wears green pants and hat, then i am more likely to recognize him.

i do not recognize the way my sister Michelle LOOKS, but i recognize her voice.  If i am looking more uncertain of things then it would be a good idea for her to find an excuse to start singing “They Call the Wind Maria” — we sang that a lot.  ((smile))

Julie could remember aloud all our hours of washing and drying dishes, singing songs, and pretending we were “house fairies” to surprise Mom with a clean house.

in younger years, i mostly saw my Uncle with a cowboy hat on his head.  So i am more likely to recognize him now if he is wearing a cowboy hat.

That sort of thing will make our visit much more comfortable than me wondering every few minutes … who are these people again ??

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Communication

Would be very nice if visitors were aware of some of the communication challenges with dementia.
If others are aware of adaptation needs then it can help tremendously.
This is Part 1 of my “Communication” series >> https://truthfulkindness.com/2014/12/12/verbal-comprehension-strategies-1/ , with parts 2 and 3 listed at the base of article.

i especially crave touch in past few years, but with covid concerns that might not be an option … and i may need reminded of that factor.

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.Фото, Автор Mircliparta На Яндекс - Scrapbook Frame Png@seekpng.com..

Activities:

Always good if visit can have planned activities.

Inside Activities:  Eating is the usual indoor activity during visits, but if family we could review Family History topics.  Would love to make some photo books, but just have not found the time to do it.

For longer visit, can eat, then watch an old movie together ((nothing too violent or with intensely suspenseful music for long periods of time)) … then eat again.  Movie time, or music time, is not the time for communication, but since i need to eat every 2 hours then by the end of a movie it is time to eat again … and talk.

We could take photo during the visit, then clear the table and MAKE a page for photo binder.

Outside Activities:  Outside visits are especially nice if we are doing a project together like planting, clearing branches, picking up pine cones for craft project, moving chickens, etc.  Our fire pit is huge so lets have a hot-dog roast, and i even have some pork-free marshmallows !!!

.Large Roasting-marshmallows - Campfire S Mores Clip Art@seekpng.com.

Memory:

Yes, it is true that i may not remember your visit, but the feelings from your visit can remain for longer time.
When it has been a long time between visits, i FEEL more distant from that person;
i cannot tell you WHY, but i can tell you that that person just does not feel as much a part of my life.  ((That is another aspect that lack of TOUCH very strongly affects.))

It is also nice if there is some visible reminder of your visit — that item repeatedly reminds me that you were here.  — Daughter might leave hand-decorated note on microwave or fridge. ((smile)).

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E A Afef Cbeef Fb Df C - Heart Scrapbook Clipart@seekpng.com

LINKS:

non-PLwD: Teepa Snow has a YouTube series called “Making Visits Valuable” which i think is excellent.  at https://www.youtube.com/watch?v=sUgPm8RMa48&list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX .

non-PLwD: Dr Daniel Potts (neurologist) has poem at https://danielcpotts.wordpress.com/2021/03/27/you-chose-to-listen/ ;

check “activities”, “communication”, and “relationship” sections at INDEX of Sx Links >> https://truthfulkindness.com/about/d-info/links-sx-strategies/  ;

non-PLwD: DailyCaring at https://dailycaring.com/visiting-someone-with-alzheimers-dos-and-donts-for-visitors/ ;

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Butterfly On Flower Clipart - Dibujos De Flores Para Cuaderno@seekpng.com

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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 11Apr2021, with 8hrs invested.  Cover picture by ArtyAngel on PixaBay. Фото, Автор Mircliparta На Яндекс – Scrapbook Frame Png at https://www.seekpng.com/ipng/u2t4o0o0y3o0w7a9_-mircliparta-scrapbook-frame-png/ .  Large Roasting-marshmallows Clip Art at https://www.seekpng.com/ipng/u2q8e6o0r5a9a9a9_large-roasting-marshmallows-campfire-s-mores-clip-art/ . .  E A Afef Cbeef Fb Df C – Heart Scrapbook Clipart at https://www.seekpng.com/ipng/u2q8e6u2r5y3w7e6_e-a-afef-cbeef-fb-df-c-heart/ .  and Butterfly on Flower ClipArt at https://www.seekpng.com/ipng/u2r5r5r5i1e6y3u2_butterfly-on-flower-clipart-dibujos-de-flores-para/ .  Tags, alzheimers, dementia, family, friends, person with dementia, PLwD, relationship, strategy, symptoms, visit

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Inflammation Communication and all tied up

.Posting this now instead of Sunday, because i have it in front of me, and my current abilities are just too fragile to be sure i will remember HOW to do it later.

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Tru here. i have inflammation in mouth (canker sores) finger, both legs, and in ear. 
No UTI, but i am tied tighter than a clock, and i expect these have something to do with my emotions that are out-of-control.

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My drive for providing kindness must have driven over to someone else’s house to park,
because i do not FEEL loving or kind. 
When asked to help, my first thought is to throw the item in their face, instead of “helping”.

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i am fed up with words;

words from folks whom i cannot understand (which is almost everyone)
and words that i cannot find, for what i want to say in reply.
NO, do not ask me to make this call, even tho it is something for ME ! 
i am past asking “please” … just DONT ask me to deal with verbal communication! 
dont dont DONT do it !!!

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NO, do not ask me to understand what you are trying to tell me “just one last time”;
i dont understand the sentences.
i dont understand the concept, and then you go trying to explain, so throwing other stuff on top of concept that i already do not understand !  
NO; do not use another illustration and expect me to co-relate two different things;
that requires keeping something in memory in order to compare it ,
… and it just “aint” happenin’ today !

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i am not stupid, but i feel like i must be stupid,
because i cannot understand others,
… and they cannot understand me
(because i cannot talk in a straight line — it goes all the way around Marshall’s barn in order to say the simplest thing). 
i cant do ANYTHING right.

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i love you and even now i want to please you. 
You are hurting and (like You) i want to make it “better”.

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i realize that i need to calm,
but No; i dont need to talk to other people. 
WORDS are emphatically the LAST thing i would like right now.
Since my tremors prevent use of sharp instruments (so i cannot cut kindling into tiny itsy-bitsy pieces) then
today i need to vent my feelings by writing, or maybe slamming several crayons all over a piece of index cardstock.
AFTER self-expression then maybe i can just curl up in a ball with my dog, or play with my “Silk” app and the soft calming music while i doodle.  >> https://truthfulkindness.com/about/life-other/arts-crafts/apps/silk/

If i had any energy at all, i would think about arranging some kind of “full-body punching-bag” like my dad had. 
… just something to PUNCH !!! 
((But unfortunately it would be likely to bounce right back, and knock me flat on my behind.)) LOL

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… However …  Today might be one of those days that YOU (as my care-partner) really NEED words. 
You might really need to be able to talk with someone who has some communication skills and some memory skills;
especially someone who might understand the family dynamics of today.

I’m sorry that i am being such a grump.

i DO love you,
and wish that i could do and be better for YOU. 
… but right now this is the best i can be.

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Next Day: Looking at sink but cannot find my wash cloth … oh look, it is rightt here.  That’s where it belongs, so why couldnt i find it? 
Looking at mug and wanting drink, but cannot remember what i do in order to get it that full.
… ugggh; gonna be a long day.

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LINKS:

Communication Part 1 of 3
by Truthful Kindness (Factors of Environment, Content, and Timing) at https://truthfulkindness.com/2014/12/12/verbal-comprehension-strategies-1/ ;

Christine Thelker re inflammation posted 05Apr2021 at https://chrissysjourney.com/2021/04/05/please-please-just-stop/ .

 

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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 2Apr2021.  did not track timeinvested in either text or graphic.  Cover photo was by me on 30Mar2021.  Tags: alzheimers, anger, aphasia,  communication, dementia, frustration, infection, mood, person with dementia, PLwD, relationship, strategy, symptoms, words .

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March Pages

Pages added during March.

 !!  Remember, Links are in 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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.  Admin Pages are below.

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Links about Dementia Communication at https://truthfulkindness.com/about/d-info/links-sx-strategies/dementia-communication/

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Art/App/Silk at https://truthfulkindness.com/about/life-other/arts-crafts/apps/silk/ ;

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Dementia Symptom Perspectives’ Pages:

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“Extremes” by Missy at https://truthfulkindness.com/index-persons-with-dementia-pwd/missy/extremes/

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“Not Afraid” by Myrna Norman at https://truthfulkindness.com/index-persons-with-dementia-pwd/myrna-norman/not-afraid/ ;

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Family History Pages:

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Kilroy-Duignan/ Irish Potato Famine at https://truthfulkindness.com/about/life-other/family-history-index/irish-potato-famine/ ;

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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 31Mar2021.  i made Cover photo 27Mar2021, designed on look of folded paper.  Tags n/a

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Activities for Future Normal

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Tru here with some activities that i choose on days with lower abilities … which will probably then become activities for my next “future normal”.

If you are follower of my blog you probably have some insight in my CURRENT activities, which are largely dementia awareness, staying connected with my dementia friends, Dementia Mentors, care and training of animals, Arts/Crafts, writing blog, and strategizing how to fulfill tasks with limited abilities.
… but what about days when my abilities are lower-than my USUAL “normal” ??

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So these are my thoughts when asked about activities for Loved Ones with medium stages of dementia; more severe than my current “normal”.

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i am partial to Teepa Snow’s categories for activity;
Productive activity: “I am still here for a reason, and the reason matters” / helpful or meeting needs in family, friends, society, or environment.
Leisure activity: (fun/play in passive and active activities).
Self-Care activity: (body, care, transportation, exercise, etc).
Rest and Restoration activity: (sleep, spiritual, battery re-charge is highly influenced by introvert/extrovert preferences).

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. Activities i would probably NOT take part in are games and “toys”.
in my innermost being, i am driven to gather, change, then distribute.  … and for ME games and toys leave me completely disinterested.

.Games of various types may be enjoyed by many, but i have never enjoyed games, puzzles, or mystery stories.
i enjoy “people-watching” while other folks play a game, and participating in the conversation, but most games seem pointless to me.  If i actively participate in a game, it is probably because i felt my participation was needed in order for someone else to enjoy the game.

TOYS: These look like a fun “toy”  >>  https://www.getspeks.com/products/fleks-magnetic-silicone-building-set , but like Duplo Building blocks or other “toys”,
i personally would probably not be interested unless there were children around, as an effort to spend time together.  … Or “needs” of someone else, as in
“Could you please build something for me to take a photo of, because i want several examples when i give this gift to my nephew”.

Similar to playing with “toys” with children, i also find myself spending lots of time with DOG toys.  The little “Hero” (in contrast to my first “Hero” which was the Service Dog in picture above) gets a new toy monthly, and he is a very social animal, so very very much wanting human interaction with his toys.  Probably half the time is bringing the toy and wanting me to throw it or squeak it or in some way interact with him.  So i find myself spending lots of time playing with the dog.  His latest toy is here, which involves plenty of time with hide and seek, and put the hedgehogs in the log … and take them out.  >> https://www.amazon.com/gp/product/B01NBIY3ZE .

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SCHEDULING:  We often have the FEELING that we should be busy working on things and contributing to family welfare, so large calendar helps with what activities are on the schedule.  In our home, after breakfast we discuss the day’s coming events.  (We dont do it the night before, because then i spend the night thinking about tomorrow’s activities, and it impacts my ability to sleep.)  For ME, this activity is both self-care, (because it pertains to MY schedule) and Productive activity (because it is the merging of schedule for me and my HUSBAND).  i usually participate in joint project of changing bedding and folding laundry on Fridays.

You might even go to a craft store or stationery shop and pickup stick-on images for Doctor Appt, Shopping, etc that have PICTURES (because on bad days i have problems connecting words with meanings).  So dinner could be “taco Tuesday”, etc, or PICS of grandchildren for visit.  This activity of creating and maintaining calendar would be the above categories, but also bring in aspect of rest and restoration or Leisure activities for ME, because i always feel most alive when i am creating something.

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MENU:  We have not had time to implement this one yet, but would like to prepare a binder with recipes and PICTURES of dinner selections, so the person with dementia (me, LOL) can give some suggestions for foods i would like to eat this week.  if PICTURES of ingredients, then i could even gather supplies and have them ready on the countertop, for my husband to cook.  Since i have bad tremors, i do much better in kitchen if foods are pre-cut, and since Labels dont do much for me any more, it is much better if supplies are stored in clear containers — again, all too often words get in the way these days.

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MOBILITY:  Balance is often more problem on my “slow” days, but animal-needs are still a priority, so must use a walker to take the dog back and forth for potty outings, but need help for moving chickens.  This also provides some necessary physical movement.  Dog needs brushed, creating more physical activity.  Dog craves his ball-time as a TOGETHERNESS function, so there is more arm-activity.  Love the “exercises” Larry encourages with his mother at https://youtu.be/ndlZYZfaRWk .

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CREATIVITY:  For ME, creating is crucial for my well-being — that is when i feel most “alive”.
* …  On my “Bad” days one of my favorite activities is the art program called “Silk2” . it is ever-so-fun, and has soothing sounds that go along with it.  i use it with Apple Pencil 2 and iPad — especially in the last hour before bed.  This product would not interest me near so much except that it has a SAVE tool, so i can save and print the pictures created for use on cards, etc.  Silk app examples and instructions at https://truthfulkindness.com/about/life-other/arts-crafts/apps/silk/ ;

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* …  i like taking paper cut-outs (or making paper cut-outs with my Sizzix/Cricut) then composing them together to make cards for my loved ones.  it can consume much time getting ready for Valentine’s Day or a major holiday.  The easiest way is to use ready-made cards and envelopes.  A $20 set of over 100 cards is at this Link >> https://smile.amazon.com/Envelopes-Cardstock-Supplies-Invitations-Announcement/dp/B083J3RM98 .

Using collage-style, i enjoy making cards of card stock cut-outs, felt cut-outs, glitter cut-outs, feathers, stickers, tissue paper, etc … and maybe even some type of paint in background for the card;  i cut my own cut-outs with my Sizzix, but IF i did not have a Sizzix (or a Cricut) die-cut machine then i would probably invest in a few packs of card stock cut-outs like the $11 feminine package at https://www.amazon.com/Prima-Marketing-Ephemera-Cardstock-Pkg-Shapes/dp/B084GX3TP9 , and the package from Tim Holtz at https://www.amazon.com/Tim-Holtz-Idea-ology-Ephemera-TH93114/dp/B00IXWLWMM .  IF i did not have a Sizzix then i would probably also invest in some felt cut-outs and glitter cut-outs.  Then i have feathers, a few sparkly stick-on “jewels”, washi tape, and tissue paper to be randomly torn and used for background.  And personally, finger paint would be very frustrating for me in painting background, but i especially use Tim Holtz’ Distress Mini Ink called “Stormy Sky” (using small foam applicators) on cards or cardstock paper.  >>  https://www.amazon.com/gp/product/B00L2PBY4I/ .

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* …  i also have a crochet tool that does not require remembering how many stitches; several sizes of “Loom Kits”, which allow me to have wonderfully cuddly warm yarn in my hands, and give ability to make stocking cap or other gifts.  But when my tremors are extra-severe then even the Loom can be very frustrating.  i do not see the brand i have in Amazon, but this set has high satisfaction rating >> https://www.amazon.com/Readaeer-Round-Knitting-Needle-Pompom/dp/B0182IQHYE .

* …  I have some just-right-for-ME coloring pictures selected and saved in digital file.  These can be printed on index stock, so that I can use my watercolor pencils on them, then experiment with wet paintbrush and water (to minimize staining of my clothing and anything else around me).  This is the brand of watercolor pencils that i bought >> https://www.amazon.com/dp/B078XGWPNL . This is a 12-min demo for use of watercolor pencils at >> https://youtu.be/y1VAxJf6VXw .

My friend Jennifer Bute uses RE-USABLE AquaPaints in her activity groups (product at https://relish-life.com/us/dementia-arts-and-crafts/aquapaints/  and video demo at https://youtu.be/1PH1SenYguY )

You might want to dedicate a box, or dresser-drawer with dividers, for craft and activity supplies to be stored in.  i have a box of craft projects specifically for days when my cognitive abilities are lower than my usual normal (whether from infection, extra fatigue, etc).

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READING / PICTURE BOOKS:  On days when i cannot read, then i like the old Ideals Publications with ONE short poem on each vintage-type picture, in magazine size format.  Examples of what they look like are here >> https://youtu.be/WSH8BeGAMmc .  Places you can purchase are at >>  https://www.etsy.com/market/ideals_magazines and https://www.thriftbooks.com/a/ideals-publications-inc/256590/ ;
If you want newer version of this idea, check out “Nana’s Books” at https://www.nanasbookseries.com/  .

But we can also CREATE picture books with our own FAVORITE poems, songs, etc, using collage material listed above in the “creativity” section, then assemble the pages in 3-hole binder.  Personally i would like to take a few of the selections from author Abraham Joshua Heschel’s anthology book “I Asked for Wonder”, and give them wonderful backgrounds.  i would also love to take some of the selections from the childCraft book “Poems of Early Childhood”, which we enjoyed as children – and as adults we read to our children when they were very young.  i would like to either scan, enlarge and print the poems in their wonderful vintage artwork, or create collage pages for them, as described above in the “creating” section.  … just have not found time to do it yet.

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GARDENING/Flower Arrangements:  i have a definite black thumb; i cannot tell when plants need water and when they dont, so either i drown them or they die of thirst.  Some plants do pretty good with that format — but i still seem to kill them.  So i can clean silk flowers and gather them for floral arrangements, or i have the “wild” Calla that grow abundantly beside the garage, which i can select for my Week-End arrangement on Rowena’s table.  (Rowena’s Round Table is an elegant carved piece that was involved in my first conscious memories as a child.)

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FILM:  i now have a hard time finding shows or movies that i enjoy. Even many of my old favorites dont work for me now because of violence or suspenseful music.  On days when even my repeat of familiar movies does not work, i enjoy scenery with soothing music.  Some of mine are Aquariums, Ocean, MusicMeditation, Forest Rays, and WaterFalls.  As a SAMPLE, My Favorite Films are listed at https://truthfulkindness.com/2017/01/17/favorite-films-why/ .  i want to make a binder with a large photo from each video that we have in our library — because hearing the name of the movie often does not trigger memories of the video like pictures do — then i can better find movies that i want to watch.

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MUSIC: Because the notes in the Pentatonic scale all harmonize with one another, there are no wrong notes.  When i am at lower abilities any musical instrument i “play” with must use a pentatonic scale.  i can no longer tune the harp that had strings removed for pentatonic scale, so … a few years ago my husband gifted me with a mini Hapi Drum.  i dont have finger strength to play only with fingers, but i enjoy using the small mallets.  professional sample is at https://youtu.be/aSQg-ff5exE .  The tone is similar to singing bowls or musical bells .  i do not try to play any specific “song” but just strike random notes — and i enjoy it.

As far as LISTENING to music i highly suggest listing favorites and being sure to include reasoning of WHY they are favorites.  Sample is at https://truthfulkindness.com/2015/08/25/music-is-connection-dementia-symptoms/ ;

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FAMILY HISTORY, Memory Box, Memory Book:  One of my biggest projects is Family History.  You might want to keep various types of books on recent history handy, and use them to trigger reminiscence.  Then jot down notes when person with dementia is talking about memories, or even better would be to turn on your iPhone video and record a short video.
i think it would be great TOGETHERNESS project to make a memory box or a few Memory Books.  This is 2-min vid on making a Memory Box or Memory book >> https://youtu.be/I8lYBhG6cCc . and https://youtu.be/dUwSm1RA2b8 .
i am trying to get my own Family Tree established on https://www.wikitree.com/ , where no membership is required.

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STUFFED ANIMALS: Need to re-arrange my stuffed-animals in the bedroom every day, in order to get out my clean sox and underwear.
Each stuffed animal is associated with memory of special Event.  That is MY version of doll therapy and a TACTILE memory box, LOL.

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LINKS:
General: Very much appreciate Teepa’s video at >> https://youtu.be/7Ek04qjT-xQ .  She also has “Brainy Day” vid at https://youtu.be/RsWsh6ONZ8w ;
… and i like the suggestions for adaptations of activities, and the  repeated need for understanding past history of person with dementia at video by Bayada Home HlthCare >>  https://youtu.be/AOgczF7BmsA ; Alz at https://www.alz.org/help-support/caregiving/daily-care/activities .  And I think in later stages i would enjoy some of the Montessori-style ideas >> https://youtu.be/0OgNmMk2CTI .

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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 26Mar2021.  invested 16hrs on text; 3hrs 05Feb2021 and 4hrs 17Mar2021; then 3hrs 24Mar and 6hrs 26Mar.  Cover photo was taken of me and the first “Hero” at MacKericher Park.  Tags: activities, alzheimers, dementia, fun, middle, moderate, person with dementia, PLwD, stage, . .  #dementia #activities .

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