May Pages 2021

Posted on May 30, 2021 by Truthful Kindness

Tru here. Been a HARD month of change and loss. In addition to my weekly Blog Entries, these “pages” were added on my website during May 2021.

!! 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.

My favorite Links for Memory, Family Recognition, etc at >> https://truthfulkindness.com/about/d-info/links-sx-strategies/memory-links/ ;

Jennifer Bute, with “Changes after Self-Isolation” at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/changes-isolation/ ;

Dementia Mentors’ member Marsha York will be missed >> https://truthfulkindness.com/memoriam/marsha-york-memoriam/ ;

Taste part 1: Loss of Smells and Taste

Posted on May 23, 2021 by Truthful Kindness

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.

… 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.

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.

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

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.

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.

LINKS:

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

Taste series:

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/ .

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/ .

Early Swallowing Problems

Posted on May 16, 2021 by Truthful Kindness

Tru here.

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

… 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.

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.

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))

*** 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.

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/ .

… 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/ .

Color as Strategy

Posted on May 2, 2021 by Truthful Kindness

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 various 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/ .

April Pages 2021

Posted on April 28, 2021 by Truthful Kindness

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

!! 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/ ;

.—————————————————————————————–.

Dementia Symptom Perspectives’ Pages:

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

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

.—————————————————————————————–.

Family History Pages:

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

Where are You?

Posted on April 25, 2021 by Truthful Kindness

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 …

.

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).

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 .

Money Control with Dementia

Posted on April 18, 2021 by Truthful Kindness

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

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.

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 ;

About Visits

Posted on April 11, 2021 by Truthful Kindness

.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.

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.

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.

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.

. 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 ??

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.

...

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 !!!

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)).

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/ ;

.* 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

Inflammation Communication and all tied up

Posted on March 31, 2021 by Truthful Kindness

.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.

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.

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”.

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.
i am past asking “please” … just DONT ask me to deal with verbal communication!
dont dont DONT do it !!!

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 !

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 round and round in order to say the simplest thing).
i cant do ANYTHING right.

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

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

… 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.

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 my mug full.
… ugggh; gonna be a long day.

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/ .