Activities for Future Normal

Posted on March 28, 2021 by Truthful Kindness

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” ??

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

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).

. 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 .

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.

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.

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 .

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/ ;

* … 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/ .

* … 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).

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.

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.)

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.

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/ ;

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.

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.

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 .

.* 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 .

Bath/Shower Needed

Posted on March 21, 2021 by Truthful Kindness

Tru here.

Personally i have lost smell sensors for body odor, (along with several other things).
My weekly tub is on the schedule immediately after nap, but if i delay husband will set up bath for me and have it waiting.

For most of us living with dementia i would suggest bath or shower first thing in the morning, or perhaps immediately after nap.
i suspect not late afternoon or evening.

.
1. ….. To folks without dementia it may not seem like bathing requires much Energy, but for most of us it is high cost for energy. By evening we have little energy to deal with washing up (especially if we are dealing with any “sundowning” symptoms)
2. ….. For most of us living with dementia, getting dressed is a big deal, so please dont ask me to remove clothes after i went to all that problem … then get dressed again after bath.

My Mom always made it a “shower party” with Grammy, and they both went in with two-piece bathing suits, with lots of singing, “dancing” and backrubs (both to Grammy and from Grammy – because it is important that she be an active participant) along with Foot-rubs.

For ME, the feel of a shower is water ATTACKING me, so i will tub bathe as long as possible, but need assistance to and from tub (along with the grab bars at tub and both sides of toilet).

if this was My Mother, and she was having a hard time with idea of bathing,
i would suggest buying a gift of bubble bath (hopefully in a scent she has not lost receptors for yet)
and show her the rose petals i bought for a special gift
(to spread on the bubbles for wonderful visuals).
Heat the room before her arrival.
Take a photo of the special bath before your Mom gets in, so you can print the photo for future reminders of how wonderful tub time can be.
With the bubble bath (soap) she would not really NEED soap. If she does use extra soap, make double-sure your Mom gets well-rinsed because we VERY often do not remember whether we have soaped or rinsed, and that can cause skin complications.

My husband also made a “tub table” (aka “tub tray”) to hold a plastic cup with my choice of drink, and create another layer of “celebration” to the weekly event. He has also bought a rose in plastic bud Vase to sit beside the tub. At times i have had candles at tub, but in later stages these would need to be the little electrical “candles”.

PS: Sue Klima has this suggestion:
… when my mom didn’t want to shower ( I think she became afraid of the water for some unknown reason),
I would tell her we were having a “spa day”.
Dry shampoo in the hair, some lotion on her face after washing it well (a “facial”),
quick manicure, mainly to soap up her hands and scrub her nails. If I had the time, I would put a quick swipe of nail polish on her.
Then the “back massage”, which was just to get her back washed down. I would use those thicker disposable washcloths that are basically bigger, thicker baby wipes. Heat them in the microwave to warm them up.
Once the “massage” was done, I’d “wash” the rest of her body, making sure to get the stinky spots really clean.
After drying her off with a small soft towel, I would put baby powder in the nooks and crannies, to help keep things fresh, as I never knew how long it would be before I could get her to go along with it again.
This was also a good time to check for any sores, especially on her bottom, as she wasn’t very mobile and mainly sat all day. If I saw a redness starting, I would put a thick layer of zinc oxide on. Any baby diaper ointment will do.
I’d finish off by fixing her hair a little. That was a good time to do a quick swipe of her ears with q-tips.
The whole thing was an involved process, but it was the best way I found to keep her clean.
Another option, if you have a shower chair…try to get her in there to sit down and “soak her feet”.
If you have to, tell her you saw something on the bottom of her foot, do it needs to soak for just a couple minutes. She likely won’t be able to bend her leg in such a way to see what you “saw”.
Once she’s in there, you may be able to give her a quick shower.
Hope this helps

Further suggestions in “hygiene” section of these Links >> https://truthfulkindness.com/about/d-info/links-sx-strategies/ .

.* Admin issues: SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”. If you put your eMail address there you should get an eMail each time i write a blog entry. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** … If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness on 21Mar2021. 6hrs invested in text, and made tub graphic several years ago. Tags: alzheimers, bath, dementia, hygiene, person with dementia, PLwD, shower, tub, . . #dementia #hygiene .

MicroWave: My Cup Runneth Over

Posted on March 14, 2021 by Truthful Kindness

Tru here.

Husband and i agreed that i should not use the stove for about 8yrs now,
because i cannot remember to turn the flame off,
and i have a difficult time with which direction to turn the knob in order to turn flame down.
Dread the day i can no longer use the MicroWave.
Needing to ASK every hour or so to heat my drink … well i would probably just go without my protein drink
… which would trigger crash of blood sugar and need for 9-1-1.

MicroWave: It is not surprising that I repeatedly over-heat food. What makes it notable is my (repeating) rationale behind it.
I want to get my drink warm enough the first time.
So every time my thought is “what is the worst that could happen
— only that it burns my mouth if I am not careful … so I will be careful but I will make sure my drink gets hot enough”.

.
Every time I forget that this is a repeating scenario.

AGAIN I set timer for extremely long and I forget that the fluid will boil out all over the microwave.
Sometimes there is no drink left in the cup.
.

i also have a problem remembering NEED for heat protection, and HOW to use potholder in my hand.

NO; please do not prevent my use of the microwave.

Strategies:

Now I have a painting from my daughter re-installed on microwave door, reminding me that “My Cup Runneth Over”.
(i discovered that i had a picture from her before, but it fell off).
Cooking times chart taped to microwave; Includes time for initial prep of my drink in large mug (99seconds) , time for RE-heat (1minute if mostly full), 33 seconds for my oatmeal, and 17 seconds for a small chicken “sausage”. Those are the primary items that I heat in microwave.
Since I no longer remember how to use potholders, I have a silicone glove stationed right beside door of microwave, to remind me.

LINKS:

Adapting by Jennifer Bute at https://vimeo.com/105022828 ;

.* 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 14Mar2021. Psa23:5b painting by my daughter Charlene Davis-Gipson 02Feb2021; . Tags: alzheimers, dementia, drink, kitchen, microwave, person with dementia, PLwD, stove, strategy, symptoms.

to Go HOME

Posted on March 7, 2021 by Truthful Kindness

Tru here.

Usually if we say we want to go home it is because we need comfort of some type.

For almost all of us,
“Mommy” and/or “Home” are synonymous with comfort.
So YOU as care-partner need to become the detective
to find out what is uncomfortable in current situation,
because we probably cannot tell you.

Remember, for us there is no such thing as “background” noise,
because our brain has lost the ability to prioritize sound.
So is there too much noise or movement
(both of which literally “scatters” our ability to focus and think)?
For many of us, we are losing the ability to connect cause with effect,
so we may be hungry, cold, thirsty, or in pain
— without being able to connect those things in a cognitive way.
Wrote about this at Cause and Effect at https://truthfulkindness.com/2014/12/28/recent-disconnect-from-understanding-source-of-dissatisfaction/ ;
For ME, living with wood heat most of my life,
the sight sound and smell of a fire means i am finally secure and at home.
Lighting is huge issue for me – which strongly impacts my ability to settle and feel secure. See more info at https://truthfulkindness.com/2020/01/13/change-lighting-needs/ ;
… and the people and animals that we love, or at least some kind of animal, even if it is a fuzzy hamster. In addition to my service dog, I currently have pet chickens in the backyard, and I have also had many other kinds of pets, including a rabbit, a goose, a cow, a coyote, a chipmunk, and cats. Any animal that is soft and appreciates handling seems like it might be an option to ME. (Goose was beyond protective to possessive, so required extra precautions.)

For ME putting up a “You are Home” picture would not be helpful. (probably partly because “home” means different things at different times).
If i am thinking of myself as a young mother, it was either Washington, Italy, or Oregon.
If i am younger than that, in my self-recognition, then it is undoubtedly one of several places in Oregon.

But part of wanting to go home is wanting the PEOPLE of “home”;
Daddy and Momma, Julie, Michelle, or Spencer
… and the ANIMALS and ACTIVITIES of home.

For Grammy, Mom put photos of everyone from many years ago (as well as current-time) on the fridge, and on the wall by the bathroom.

. . .

…

At our house, we now have a dedicated wall by the bathroom that my husband has posted a full-wall corkboard.
Doesn’t have many photos yet, but it has the menu from restaurant party when we announced our engagement 30yrs ago.
That wall will be my VISUAL assurance that i am “home”.

Audio assurance might be one or two of the songs in my “favorites” list
— depending on WHY they are favorites
(and that is why i think it is important to include the reasons songs or movies are listed in “favorites”).

If You are living with dementia,
it might be good to think of what elements make a place “home” for you?

If you are a Loved One,
then now is the time to start gathering those things,
and preparing for the time you hear the request
“i want to go home”.

.
LINKS:

Suggestions from Valerie Feurich (with Teepa Snow) at https://teepasnow.com/blog/how-to-calm-a-person-living-with-dementia-who-is-wanting-to-go-home/ ;

. ;

.* 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 07Mar2021. 5hrs invested in text, plus 13hrs invested in graphic, LOL. Tags: alzheimers, caregiver, comfort, dementia, home, person with dementia, PLwD, strategy, symptoms, to go home . . #dementia #comfort .

TP and Dementia

Posted on February 28, 2021 by Truthful Kindness

Tru here.

i have answered this question enough times that i decided to just make a page for it;

Why do folks with
mid-to-late stages of dementia
put their toilet paper everywhere EXCEPT for in the toilet?

My most-probable-theory is that she is reverting to her youth,
when it is likely the toilet paper was burned instead of put in toilet.

.
In many cultures the toilet paper is not to go in the toilet (even current-day).
Like my mother; during her formative years my mother used old newspapers or catalogues as toilet paper,
… in an outHouse
(and in fact we used an outhouse during visits at my grandParent’s house until the late 1970s when a real toilet was installed inside the house).

My grandfather insisted that he had been “Housebroken” as a youngster;
he thought it was terrifically gross to have a toilet too close to the living space,
let alone actually INSIDE the house.

.
Even if they had an actual toilet in your mother’s formative years
Maybe her family had complications with toilet septic tank and needed to make sure it did not get too full.
or simply because the toilet-flushing mechanism was in a perpetual state of not-working when she was young.

And another issue is “hiding” fresh soft toilet paper;
even if they had an actual toilet in your mother’s formative years
— they may or-may-not have been able to afford the “new” toilet paper;
instead they probably made do with corn cobs, old newspapers,
and the old Sears catalogue.

Whatever the reason, these issues were common in previous generations …
and when she is having more cognitive problems (especially in afternoon and evening) …
then she is likely to revert to childhood patterns in her storage of toilet paper.

i suspect that if i was care-partner, and we were dealing with this symptom in my home,
i would probably suggest one of those diaper pails beside the toilet,
with a simple easy-open lid (not the floor-pedal to open the lid).
… but it would need to be a different color than floor, toilet, or any nearby walls
(otherwise it would “disappear” from her sight due to lack of depth-perception).
Then husband would probably make a short shelf above it
to hold spare Toilet Paper,
so that the dispenser is visually associated with the toilet paper.

— or if my mother was hoarding stashes of unused (new-fangled and SOFT) toilet paper
then she might like to keep some rolls of it in her bedroom, and pockets,
and everywhere else that you keep treasures.
Because soft toilet paper is a treasure and should be valued.

Links:

Might check other Links in “hygiene” section of this page >> https://truthfulkindness.com/about/d-info/links-sx-strategies/ .

* Admin issues: SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”. If you put your eMail address there you should get an eMail each time i write a blog entry. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** … If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness on 28Feb2021. Photo for Featured graphic was taken by my son Brad Davis at my Grandparent’s house, which is now where my mother lives. Tags: alzheimers, caregiver, dementia, hygiene, symptoms, toilet, toilet paper. . #dementia #toiletpaper .

Feb Pages

Posted on February 25, 2021 by Truthful Kindness

Pages added in February.

!! 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.

.—————————————————————————————–.

. Admin Pages are below.

Affiliations/Dementia Chats at https://truthfulkindness.com/about/about-me/tlk-affiliations/dementia-chats/ ;

Links about Driving with Dementia at https://truthfulkindness.com/about/d-info/links-sx-strategies/driving/ ;

.—————————————————————————————–.

Dementia Symptom Perspectives’ Pages:

Harry Urban/ a “White Flower” at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/wte-flwr/ ‎;

Susan Suchan on Advocacy at https://truthfulkindness.com/index-persons-with-dementia-pwd/susan-suchan/advocacy/ ;

Graphic is Simple version of my PaisleyHearts picture copyright Truthful Kindness on 04Feb2021. Posted 25Feb2021.

Repeat Questions

Posted on February 21, 2021 by Truthful Kindness

Tru here.

My personal short-term VISUAL understanding is much much better than my VERBAL understanding (for words), so …

When I ask the same question multiple times,
then my husband makes the answer into a picture, and
puts that picture on my workdesk
so that every time I get distracted and look up … I see the answer.

In your case,
My husband probably would have made a “shopping list” on 3×5 card — with “curtains” in big letters with a DRAWING (because when scattered i understand pictures much better than words).
He would have asked me to hold the shopping list until we get to the store.
That would put the picture in front of me every time i thought of asking. (However, he would also add a couple other things like maybe “hooks” on the list so that it actually looked like a “real” list, so that i did not feel patronized).
He is creative like that ((smile))

General Communication Tips:

a) My personal verbal short-term memory is severely impaired so don’t expect me to remember ANYTHING that you tell me (even for five minutes)!
b) Use shorter sentences than usual; with less extra phrases I am more likely to remember the subject, object, and verb in order to connect the sentence. I am NOT stupid; I understand each word individually, but have difficulty connecting them as concepts.
c) Minimize descriptive monologues or conditional clauses. (I may get the “if” part, but by the time you get to the “then” part I have lost the “if” entirely.)
d) Please wait short pause after each sentence for me to “compute” your words, then you can resume speaking for the next sentence. The time necessary between sentences may change from day to day or even moment-to-moment (especially true with Lewy Body Dementia).

g) Really I am not purposely developing dementia in order to grow your “patience quotient” — it is just a side-benefit for all concerned. ((big smile)) … And the coup-de-gras; please allow me to interrupt if I raise my hand, because otherwise the thought will be forever lost.

If I ask you the same question multiple times there is a good chance that for some reason the answer did not “register”.
This may be because your answer did not address whatever concern caused the question to start with.
You need to be a detective; look for something that maybe you did NOT answer earlier. An example might be if the question is a matter of calendaring then maybe my concern is another event I think may conflict with this, and it might be helpful to visually compare the events on calendar. … or i might be worried about something that is to occur during this scheduled event (doctor appointment).

If I asked a question and your answer was “I don’t know”,
then I can almost guarantee I will not remember your answer
so I suggest you just write it down now, BEFORE I ask you five times.
LOL to my husband!
How could you (the awesome answer man) NOT know the answer??
— Of course that does not compute!!

. * 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 21Feb2021. “General Communication Tips” were originally in entry at >> https://truthfulkindness.com/2014/08/16/commun-early/, then invested an additional 8hrs on text. Featured graphic Red Stage Curtains graphic was created by Open ClipArt on PixaBay. Removed background and added several Layers of “Little Bird” font. Tags: alzheimers, caregiver, communication, dementia, question, relationship, strategy. #dementia #caregiver .

Partnership Communication: Distress and DisComfort

Posted on February 14, 2021 by Truthful Kindness

Tru here
hoping to provide insight on communication Symptoms;

PARTNERSHIP Communication

… If she is quiet around others, but mumbling and grumbling (or moaning and groaning) around you,
my guess would be that it is because she is most closely attached to YOU !
There are degrees of transparency.

i consciously express positives;
i am always looking for positive aspects, blessings, and sources of gratitude.
i rarely express much negatives, but
… When my husband is around then i am much more likely to ALSO express the negatives of life.
Those expressions just come out of my mouth totally involuntarily (and surprise me).

Our PARTNERSHIP means he is part of me, and i am part of him.
(just as your mother is part of you – and you are part of her)

DISTRESS AND DISCOMFORT

Realize that some pain and discomfort are very VERY difficult to identify and/or put into words.

If you and doctor have not been able to come up with medical reason for uncomfortable sounds she is making, then you might want to look at her surroundings;
are there “background” sounds that might be intensifying her confusion and discomfort ?
((for us there is no such thing as “background” sound;
any sounds from TV, radio, etc often overpower emotional calm)) .

Does she get bright light or visual movement that might create discomfort ??
Are sore muscles or joints “flaring” ??
Maybe she has the beginnings of a UTI, … or even mouth pain ???
(i have known people who have had UTI or similar infections that masked even pain of cancer
– but still person with dementia was unable to recognize the neurological signals as “pain”.)

Sometimes i RECOGNIZE that i am uncomfortable or more confused, … then i can voice my discomfort.

But there are other times when i do not recognize that i am uncomfortable or more confused;
something is just WRONG … and i definitely do not know why.

But eventually i will see something;
i will see a mug, or a sandwich, or a blanket.
… and THEN i realize
i am thirsty,
or i am hungry,
or i am chilly.
— Our mind does not readily connect cause and effect any more.

Links:

Cause and Effect at https://truthfulkindness.com/2014/12/28/recent-disconnect-from-understanding-source-of-dissatisfaction/ ;

. * 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 14Feb2021. invested 15hrs over 6 weeks (began 03Jan but WordPresswouldnt adjust date so needed to copy/paste for a new entry) … plus 7hrs on graphic. Featured graphic Began with bird stencil from ChipLanay on PixaBay, then added pic of crackled mud from Pexels on PixaBay, then created edging and changed some color hues. Tags: alzheimers, caregiver, communication, dementia, discomfort, distress, nonverbal, pain, relationship, symptoms, talk.

Friends don’t Lie … but …

Posted on February 7, 2021 by Truthful Kindness

February is all about RELATIONSHIP, and Communication is crucial to relationship.

Tru here.
Truth is crucial to my relationships, (as you can imagine – given my name).
Many of my friends feel the same.
i think very often the person with dementia is not sure whether you are telling the truth or not,
but lying can create emotional barriers that were not there before.

i need to be able to trust you.
So please try to find a creative solution that does not require lying,
but also avoids the constant breaking-open of old grief.

Please Do not lie to me, but it is okay to VALIDATE then RE-DIRECT

Retired Dr Jennifer Bute suggests that when she time-travels and asks for her husband, care-providers are not to lie, but remind her using words like “… he was often away in Africa” … then encourage her to talk about special times with her husband.

From what i hear,
After a few minutes of talking about her husband, she is likely to remember that he has died on her own
without the huge traumatic element of surprise.

Naomi Feil is an American gerontologist who developed Validation therapy.

Please Do not lie to me, but it is okay to VALIDATE then RE-DIRECT . i have always been a “Daddy’s girl”. If i am asking where my father is, you might say “Fathers are so very important. i dont believe i have met your dad — could you tell me about him?”. “What are some of your favorite times with him?” … “He was a switchman for trains, do you have any special memories about those times?” “i heard your family taught ballroom dance, what was your favorite dance?” (it was the Latin dances like Samba and Tango, LOL). Then quickly re-focus to “Let’s see if we can find a picture”, or “what does it feel like to dance?” Maybe we can find some music.
i suspect that to successfully Re-Direct you will need to have a relationship with me that is thorough enough to understand what motivates me, and predict my most probable response. Personally, I very much want to supply needs for others, so if a new care-provider is arriving, I might suggest that you tell me “Emily would like to learn more about dementia, so she will be spending some time here this WEEK” (without mentioning any further time than that, unless it is a relief to me instead of stressor). Let me be a PARTNER in my care, as much as possible, and it would be great if “Emily” really IS interested in learning about dementia. — There are times that i have forgotten i have dementia symptoms, in which case she can be interested in learning something else that i have knowledge of — maybe Service Dogs, or card-making.
Then immediately distract me with other things, so that i do not dwell on the future.

Grief is a long process, and it is important to not skip a bit of it, but yet … if i have spent 10 minutes crying in grief on the issue today, then next time TODAY please say “i havent seen him in quite a while, but since we are waiting for him lets do this”. Tomorrow i may need to take another 10 minutes talking about him and crying, and if i ask about him, then please encourage me to talk about him again.

How do carers FIND OUT about another person, as foundation for relationship??
Finding out about ME can be done at these pages, — and might give some ideas for similar projects for others:

About Me at https://truthfulkindness.com/about/about-me/ ;

My Favorite Things at https://truthfulkindness.com/about/about-me/favorites/ ; and

Bits ‘n’ Pieces Memoirs at https://truthfulkindness.com/bnp/ ;

… and even Family History at https://truthfulkindness.com/about/life-other/family-history-index/ ;

Links:

Vid by Richard Taylor “Please Dont Lie to Me” at https://vimeo.com/95520334 ;

Retired Dr Jennifer Bute’s website at http://www.gloriousopportunity.org/ ;

not PLwD: Validation Therapy by Naomi Feil at https://youtu.be/ESqfW_kyZq8 ;

not PLwD: “Where is Joe” by Psychologist Amanda Mullen (with Teepa Snow project) at https://teepasnow.com/blog/where-is-joe-vital-tools-for-coping-with-sundowning/ ;

. * 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 07Feb2021. invested 7hrs on text, and over10hrs on graphic. Tags: alz, communication, dementia, distress, fib, persons living with dementia, PLwD, relationship, strategy, talk, therapeutic lie, truth.

Fear as Cause of Anger in dementia

Posted on January 31, 2021 by Truthful Kindness

Tru here answering a question:

i think FEAR is the source of much frustration and anger with beginning dementia symptoms. ((But i acknowledge that fear is not the cause of all anger in dementia — more for some than others)).

.
These can be some of the sources of fear.

Communication: Every time i think of something i want to contribute to conversation — by the time i get to say a word edgewise, that thought is gone. Right now i REMEMBER it is rude to interrupt, but in my efforts to continue relationship I FEAR that my filter will fail, and i will be rude to others. Also fear my filter will fail and i will spill secrets. So often my reaction is frustration and anger.
Control: Everything feels out-of-control — and especially out of “my” control.
((i think The more a person “needed” control of their environment before dementia hits, that creates stronger panic when things are out of their personal control — control has been a coping strategy to keep “sane”, and now it is gone)).
Employment: Many workers “fear” retirement, because it means we are no longer “producing”. When a person is forced out of employment due to a “dementia” diagnosis, the anxiety is ever-so-much more intense. We lose income. Usually we lose the friendships from workplace. We fade from social structure. We face crisis.
No Therapy or hope is given at point of diagnosis.
It feels like this is the end and we feel set adrift.
Dependency: We WILL lose our license to drive (or have already lost it), and driving in most cultures is associated with adulthood and independence.
it FEELS like our adulthood is now in question.
Our Abilities are decreasing, and we are becoming so ** bleeping** DEPENDANT on others and on circumstance. ((And what happens when those “others” have their own plans and needs??))
Finances: Usually, We have no income of our own; until Social Security or Retirement kick in, we have no “ownership” of funds to purchase what we might need …
or what we want to give to others. my condition of Social Security funds was that the funds must go to someone else, who will control the money.
((Our days of giving gifts as an individual –from “me”– are now gone, because it is actually someone else’s money)).
Anticipatory Panic: We hear the bleak outlook from caregivers about what other people with dementia do in middle-and-late stages, causing caregiver burden and suffering; and we picture ourselves being the cause of that suffering, in the future.
What can we do to prevent our loved ones feeling this suffering and BURDEN?
This can be a very strong source of panic and fear, triggering thoughts of suicide.

Add possible effects of stigma, and you can see how fear is almost a very reasonable response. — With Anger as a reasonable extension of fear (adrenalin says to escape or attack).

Strategies:

i think THE major contributing factor can be how each individual deals with GRIEF.
if he has not yet accepted diagnosis, begun the grieving process (which often involves ANGER) and decided to find the good in life that remains … then that is probably where he is now.
Wrote about this at https://truthfulkindness.com/2017/04/21/pwd-grieve2accept-dx-purpose/ ;

Finding peers with dementia can be a big step in dealing productively with grief adjustment, and there are many groups for persons living with dementia.
at young age, he can probably still text well, so there is “Living Healthy with Early Onset”, “Just for Early Onset”, etc.
For video chat, i am very partial to https://www.dementiamentors.org/ .

Personally i suggest avoiding too much contact in caregiver groups, because the constant talk of future (later-stage) symptoms can be very discouraging. We want to help, but must keep these things in BALANCE to avoid over-exposure to anticipatory grief which is dis-Abling.

i avoid focus on things over which i have no control (like politics and finances). i use journaling (whether text or pictures) to keep perspective that not ALL days are bad days — because fear can take over when i feel like time is running out, and all the good days are gone.

With these tools, it is much easier to deal with the grief in healthy ways. Remember neither of you are alone in this.

.LINKS on Anger and Fear:

Alzheimer’s Anger by Missy at https://truthfulkindness.com/index-persons-with-dementia-pwd/missy/alzheimers-anger/ ;

Uncontrollable Fury by Harry Urban at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/uncontrollable-fury/ ;

Fear of being a burden by retired doctor David Hilfiker at https://www.agingcare.com/Articles/On-Being-a-Burden-186064.htm ;

Fear from Clinical outlook and “prognosis” by Susan Suchan at https://alzauthors.com/2017/02/14/meet-blogger-susan-suchan-this-disease-does-not-come-with-an-instruction-manual/ ;

Anger at interruption by Cindy Odell at https://ftdnoflowers.blogspot.com/2018/01/mood-swings-anger-and-frustration.html ;

Mike Belleville and Brian LeBlanc vid on anger, family, and relationships at https://youtu.be/psHl3gcnArU ;

1-hr “Dementia Chats” on Anger at https://youtu.be/7r1aD0CkgjY ;

. * 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 31Jan2021. invested more than 10hrs beginning 13Jan2021, but messd up and needed to copy/paste to new entry. Cat picture from FreePhotosArt on PixaBay. Tags: alzheimers, anger, communication, dementia, fear, persons living with dementia, PLwD, relationship, strategy, symptoms

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