Break Time 2018 Sept Oct

Tru here.

In the next month i have husband’s birthday, my birthday, my mother’s 80th birthday celebration, and two other family gatherings from connections made via dna.  … Then i need time to recouperate from all the celebrations.

We all need a break from time to time.  Averaged one blog entry per week for first 8 months of 2018 … but (like last year) blog entries will be less frequent for a while.

Despite break times, all together there are 172 blog “entries” plus ~350 blog “pages” on this website over the past four years, which averages more than 10 postings per month.

My goal in next couple months is simply one blog entry or more per month.  Considering each blog entry now averages well over 8hrs time investment, i think that is plenty of time investment during my break.  I hope to return to “Truthful Tuesday” pattern well before the end of 2018.

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During this break time …

i will continue FaceBook contact with friends who are living with various types of dementia, and sharing their projects from time to time, both here on my blog, and on Dementia Symptom Perspectives’ FaceBook page.

i will continue my tasks as Assistant Administrator with Dementia Mentors.

i will continue as member of Advisory Board with USA Dementia Action Alliance (altho i am decreasing number of sub-committees i participate in).

I will continue as host for each Monday Dementia Mentors’ group chat, and attend most of the other daily chats as a guest (needed for my well-being).

i will continue trying to share a project from someone living with dementia at least 5x/week on Dementia Symptom Perspectives’ FaceBook page.

… but i just cannot continue all the above PLUS spending about 10hrs/week on blog, … and do the family stuff that i want to do in the next couple months — not and deal with my own dementia challenges at the same time.

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Related LINKS:

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My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Dementia Symptom Perspectives’ FaceBook page >> https://www.facebook.com/dementia.symptom.perspectives

Dementia Mentors >> https://www.dementiamentors.org/

USA Dementia Action Alliance >> https://daanow.org/

Most recent entries are here >> https://truthfulkindness.com/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). 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 © 2018 Sept 27. .

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Vegetable or Human

 

Tru here.

i rarely talk about terminology, because Language is transitory.
Context, context, context.
Context of time; In any specific location a word can mean one thing, but in a few years it might mean something else even in that location.
Context of location; if you are talking to someone in a different community or a different nation — the word can again have an entirely different meaning.
Context of surrounding words, phrases, and paragraphs; If you add context on the page, that can also entirely change meaning of a word.
So mostly i try to avoid topic of terminology, because too much possibility of misunderstandings.

But there is a huge difference between plant life and animal life.  Offended by CBS’ 60-Minutes’ decision to include Mike’s opinion that Carol has become “a vegetable” in their finished episode, and my reply to them is further down on this page.

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I am offended by the medical term “vegetative state” which apparently became popular at the birth of bioethics (1978 Belmont Report).

Term “vegetative” is “relating to, composed of, or suggesting vegetation” (plant life).
i do not believe there is EVER a validation for suggesting that a person is related to a vegetable.
There is a live plant, the process of death, and a dead plant.
There is a live person, the process of death, and a dead person.

Please note the research Links at bottom of this page.

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Terminology can be very important and terms like “disappear”, “gone”, and “vacant” contribute to the perception that no Person exists any longer; only a shell.
That is often a theory, but far from a proven theory (or fact) and contributes to the thought that we should suicide while we still have the ability,
in order to prevent unneeded financial & energy drain on our loved ones.

If our person is no longer alive then suicide only makes sense. 

In contrast, if we are alive, but only able to be responsive for brief unpredictable moments,
(with days, weeks, and months of no ability to outwardly respond)
then you are motivated to continue looking for those moments when our “personhood” peeks from behind the curtain of disease,
… & sparkles.

But if you are not looking … then you will miss the moment. Please look for us.”  — TLK

What is a “vegetative state” ??

BrainFoundation.org.au helpfully states the following:

“… A person in a vegetative state may open their eyes, wake up and fall asleep at regular intervals and have basic reflexes, such as blinking when they’re startled by a loud noise, or withdrawing their hand when it’s squeezed hard. They’re also able to regulate their heartbeat and breathing without assistance.

However, a person in a vegetative state doesn’t show any meaningful responses, such as following an object with their eyes or responding to voices. They also show no signs of experiencing emotions nor of cognitive function. …” ((font emphasis my own))

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Dr Steven Novella, Neurologist at Yale, states in ScienceBasedMedicine.org :

“… many patients with a diagnosis of PVS ((Persistent Vegetative State)) have signs of minimal consciousness if they are examined more thoroughly. While it is disappointing that the misdiagnosis rate remains so high, such results are not surprising. The diagnosis of PVS is partially based on the demonstration of a negative – the lack of any sign of even subtle and transient consciousness. Demonstrating a negative is always only as reliable as the thoroughness of the search, and it is not surprising that a more thorough search is therefore finding more patients with subtle signs of consciousness.”  ((font emphasis my own))

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Apparently the American Neurological Association discouraged “coma vigil” term in preference to “vegetative”, but i totally disagree.  I think term “coma vigil” is entirely appropriate because this is a time when vigilance is still very important.  Too many times folks have come out of coma or “vegetative state” with news of their perceptions during the time period … when it was said they had no emotions or cognitive functions.  This is a PERSON … not a vegetable. !!!

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On August 16, 2018,
I sent this email response to CBS regarding the 60 Minutes episode
posted Aug12, 2018 with Dr. Jon LaPook, Mike Daly, and Carol Daly who has Alzheimer’s.
>> https://www.cbsnews.com/news/60-minutes-alzheimers-disease-following-a-couple-from-diagnosis-to-the-final-stages/

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Thank you, CBS, for bringing attention to needs of care-partners for folks with Alzheimer’s and other forms of dementia.  i think it is important to share benefits of music and probable need for facility in late-stage care. … but … disappointed that even in early-stage interviews with Mike and Carol Daly, CBS really mostly emphasized decline rather than possibilities for activities Carol WAS able to participate in and enjoy. Extremely disappointed that CBS allowed term “vegetable” (which literally de-humanizes the individual) and Carol being two different people.

Just because she has lost almost all physical and cognitive ABILITIES does not mean she is not the same person !!! Even with Alzheimer’s (or any of the more-than-100 other types of dementia) everyone’s path is different, and almost always, if folks spend enough time SEARCHING for glimmers of that person … they will find that the person is still there … just progressively unable to express themselves and perhaps spending almost all their time in their individual world.

i know that Mike’s opinion is that his wife has become a vegetable, and i know there is a theory that the person is no longer present — only tissue and blood, etc. i have found no data to support that THEORY and it can be an extremely unhelpful perspective for careful, considerate care of the PERSONS who no longer have the ability to express themselves.

 

This episode felt like fear-mongering.
There is enough fear even in a carefully-balanced and thoughtful portrayal, without reaching for it.

 

Would have been good to have greater context on what kind of conversations this couple could have had during the previous years, etc .
Suggest contacting Dementia Mentors, Dementia Action Alliance USA or other organizations who strongly consider input from folks who are living with the disease.

DAA (Dementia Action Alliance) plans a conference in Atlanta GA June 2019.  You might want to contact Karen Love or Jackie Pinkowitz for more information on “Re-Imagining Dementia”.

Gary LeBlanc at Dementia Mentors is an excellent resource.

Teepa Snow’s “Positive Approach” could be helpful.

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Related Links:

CBS Episode >> https://www.cbsnews.com/news/60-minutes-alzheimers-disease-following-a-couple-from-diagnosis-to-the-final-stages/

Dementia Mentors  >> https://www.dementiamentors.org/

Dementia Action Alliance USA  >> https://daanow.org/

Teepa Snow  >>  http://teepasnow.com/

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

And my own website >>  https://truthfulkindness.com/

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Some of the Links i visited on this issue are below:

Please note the “Diagnosis” section >> https://en.wikipedia.org/wiki/Persistent_vegetative_state

BrainFoundation >> http://brainfoundation.org.au/disorders/vegetative-state

Dr Steven Novella, Science-Based Medicine >> https://sciencebasedmedicine.org/minimally-conscious-vs-persistent-vegetative-state/

New England Journal of Medicine >> https://www.nejm.org/doi/full/10.1056/NEJM199405263302107

2001 Yearbook of Intensive Care and Emergency Medicine >> www.coma.ulg.ac.be/papers/vs/Coma_Yearbook2001.pdf

My entries on Terminology >> https://truthfulkindness.com/tag/terminology/

CBS page for response >> http://audienceservices.cbs.com/feedback/feedback.htm
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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). 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 © 2018Aug 20. 10hrs investd for text & 3hrs for graphic.  Tags are: dementia, human, PLwD, terminology, vegetative state.

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Recent Pages Added August 2018a

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Pages recently added to my blogsite are from:

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Harry Urban “Gardening” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/garden-2018may/

Judy Rogers Brinkley “Completely Whole” >>  https://truthfulkindness.com/index-persons-with-dementia-pwd/judy-brinkley/completely-whole/

..

Index for other contributions here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). 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”.  Tags are: dementia, persons with dementia, PLwD.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Snorkel Vacation Strategy

Tru here.
Went snorkeling with Manta Rays this month, and we learned that taking me on spontaneous vacation is no longer a wonderful idea.  Had never been to Hawaii, but it was a whirlwind trip.

Have spent close-up time with several other animal-encounter modes; Hands-on 1-hr visit with octopus, 1-hr visit with penguin, held baby jaguar, raised a coyote pup, etc.  But these were not in their own natural “wild” environment during our close-encounter.  Encounter this month was different.

Much appreciate the photos and video we have, but my senses were so overwhelmed that i have only retained two mental “snapshots”; one was when husband said that he wanted to share this experience with me.  He requested we take time and money to snorkel with the manta ray.  And the other was a mental snapshot of the white under-side of a manta … almost touching my nose.

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Contacted Hang Loose Boat Tours for MantaRay Night Snorkel Tour (link below).
Notified them of my dementia symptoms to minimize surprises.
Arranged for someone to swim down and video the manta ray encounter from deeper in the ocean.

So husband got home Wednesday night.  Thursday he took me to try on several full-length wet-suits, and rented one for the weekend, then packed.  Left Friday morning, driving 5hrs to airport then flying 6hrs, and arriving in Hawaii equivalent of about 1am our time.  Obviously i was THOROUGHLY exhausted (my bed time is before 10pm).

We got up Saturday morning, and had leisurely drive to “Turtle Bay” , (because i have a thing about turtles).  Did not see any turtles, but quite a few rather-large colorful fish.

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About 5pm (8pm Pacific Time) it was time to gather for Manta Ray excursion.

It was an exciting boat ride, with choppy waves, and dolphins playing in the wake of the boat.  i was very glad i had taken a pill for motion sickness.  There was loud music playing along with excited squealing from fellow passengers, and i was very glad that i had remembered several sets of ear plugs.  Water and air was sparkling clean — not affected by volcanic smoke or ash.

Simon and crew helped me into the water.

Unfortunately i forgot this Night Snorkel with Manta Rays trip would last much longer than my sugar level from eating would last.  I need to eat every two hours, or blood sugar crashes.  Excited squealing from fellow persons in close-encounter with MantaRay, my own excitement, choppy water during boat trip, and pressure of holding my arms above my head for extended time all contributed for a sugar crash.  Consequences of not thinking things through to plan well were extreme shaking, unable to hold onto the light bar, suspect i hyper-ventilated, and needing to go back to the boat.  After helping me out of the water, Simon and crew realized i was having problems, got me back to my seat in a quieter (and most stable) part of the boat, offered me some snacks, and the traditional “chum bucket”.  They checked on me several times and kept an eye on me constantly.  After the boat docked, an assistant helped husband get me back up to the car, then hung around to make sure i was okay (since did not have walker with me on the boat).

… but when i got back to the motel (again very late, by my inner clock) and laid down on the bed Saturday night, all i could see mentally was a very close, close-up of the white under-side of the MantaRay, almost touching my nose (several persons’ faces got wiped by the manta).  So much sensory overload that i dont think i showed much emotion during the excursion,

… but i smiled as i fell asleep.

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Next day, Sunday, we had leisurely breakfast then afternoon return flight of about 6hrs.  We spent Sunday night at motel before 5-hour drive home on Monday, but better planning on our part (mine and care-partner) would have made this a truly exceptional encounter.

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Benefits:
Completely new activity, in completely new environment (under water), using completely new sets of mental and neurological systems.  (Good for neuro-plasticity).
Wonderful photos and underwater video of trip.
We ordered (and today received) stuffed toy Manta to add for my memory collection, providing daily reminder of the close-encounter.

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Learned:
NEED to plan one day on each side of an event, (even travel) to wind down.
Need to remember blood sugar level in all phases of planning process.
Need to consider sensory overload (sight as well as sound) as a strong element for exhaustion, as well as physical exertion.
If you want souvenirs, then plan TIME for that activity.
Need to confirm in writing, BEFORE payment, that travel seating is adjacent to care-partner.

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Related Links.
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will allow you to return to this tab easily (at top of window) when you finish.
Remember, Links are on colored text, not the pictures.

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Painting “Sensory Overload” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/max-mccormick/max-mccormick-2014/

Hang Loose Boat Tours >> https://www.hawaiitourboat.com/

“Sensory Change”s pdf booklet >> http://www.sdwg.org.uk/talks-and-publications/

People Explain >> https://themighty.com/2016/02/people-explain-what-sensory-overload-feels-like/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). 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 © 2018-07/30. Tags are: animal, dementia, PLwD, strategy, symptom, travel.

MyFreeCopyright.com Registered & Protected

Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Recent Pages added 2018 July

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 on colored text, not the pictures.

Pages recently added to my blogsite are from:

Mary Radnofsky

Vocabulary >> https://truthfulkindness.com/index-persons-with-dementia-pwd/mary-radnofsky/vocabulary/

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((Plan to write about my trip to snorkel with Manta Ray SOON — just gotta have time to upload photos and video.))

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Personal Family History

Year WITHOUT Summer 1816 >> https://truthfulkindness.com/about/life-other/family-history-index/year-without-summer-1816/

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Index for other contributions here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown.  Tags are: dementia, PLwD, .

MyFreeCopyright.com Registered & Protected

Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

My Philosophy on Group Relationship

Tru here.  Been thinking about this a lot in past few weeks, so might as well write about it.  i am not a social or psychological professional.  These are personal observations from me; just another person (who is driven to collect, analyze, synthesize, and distribute data — as well as any other thing around me).

Each of us can chose which side of the penny that we want to SEE on top; to focus on.  But if we hold a penny in our hand, then we hold BOTH the “heads” side, and the “tails” side — not one or the other exclusively.  For an extreme illustration, food can be wonderful during the intake process … but out-flow of food is a necessary, stinky, messy process.  Excrement MUST exist since we are physical animals; ceasing that process means the end of our physical life.

Each person in our life will have aspects that we enjoy, and aspects that we struggle with.  Almost always, any single personality trait can produce aspects that are both wonderfully helpful — and also potentially harmful.  Will use characteristic of my spouse, Guy, to illustrate this point, since ours is my most primary human relationship at this point in my life.

Guy is wonderful at spotting situations that might create future problems.  This trait was one of the primary things making him a great Water and Sewer Plant Supervisor, and is important in so many ways for our daily safety and security.  BUT, when Guy is under added physical or emotional stress, this same trait can be a struggle for all around.  He can take something that (in everyone else’s perception) has very little possibility for being a problem, and go to extreme lengths to make sure we will avoid it.

At my core nature i am an analyst.  My need to collect, analyze, synthesize, and distribute, is one of my greatest strengths — but it can also be my greatest liability.  Ask my husband; even Truthfulness, and Loving-Kindness, can at times be a liability, LOL.

There is a positive and a negative side to every personality trait.  This is even true of animals; Onyx & Snuggle (my chickens), Hero my service dog, and obviously every human … and every GROUP of humans.

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Sometimes we humans have a tendency to search for that perfect person, or that perfect group of persons, with whom we will have perfect alignment and no struggle … but that is not realistic.  in past years i have been in frequent contact with 3 relatives who died with dementia, then part of several dementia groups during these last years.  My personal observation is that this can become even more accentuated with age … or with dementia symptoms at any age.

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The nature of humanity makes it so that there will be benefits AND liabilities in any group of persons – and the more persons involved multiplies each of those possibilities.

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Any group requires written or unwritten accomodations for needs of other persons, because no two persons have the same beliefs, goals, and interests.  But ALL have value.

Conversational TOPICS in Group Environment:

Of course there is the obvious avoidance of super-charged topics like religion and politics, (unless all are in agreement to discuss those topics) but those are not the only potential problems.  As one of the Dementia Mentors’ hosts for several years, Following are some of the conversation problems folks have approached me with in the past.

DIAGNOSIS, SYMPTOMS, MEDICATION, AND PROGNOSIS: Some folks really want intense talk about symptoms, and i think all would agree that conversation about these aspects of life with dementia should be an important aspect of discussion among folks who all have dementia symptoms.  But taken to the extreme this can be desire for validation of worry, or desire for pity party, which is usually not healthy.  On the other extreme are those who desire VERY little talk of these aspects; avoiding these topics allows the UNSPOKEN undercurrent of common challenges … but mostly talk of “fluff”, which helps keep their mind off the worry of their own symptoms and prognosis.  Also there is the concern for misunderstanding; that what is said could be taken as “medical recommendations” or “legal recommendations”, which should not be the case, and is actually dangerous.  So “dementia” conversation is of primary importance, but has potential to un-balance the balance-scale of comfort level for some participants.

ENTHUSIASM & SPEED:  Some folks jump right into conversations (like exuberant family dinnertime conversation, when it can be difficult to get a word in edge-wise without interupting other family members) so very informal group is great for them.  But quiet, contemplative persons might feel unwelcome to speak unless there are rather prolonged times of silence (which, with enthusiastic, talk-loving group hardly ever happens).  Those persons prefer a bit more structure, with specific time for each person to speak, which in turn, can be very uncomfortable for some, feeling put on-the-spot with that structure.  Sometimes it may be of the most benefit to have a more intimate, small group, so that everyone has a chance to speak.  So enthusiasm and speed of conversation has potential to un-balance the balance-scale of comfort level for some participants on all sides.

ADVOCACY:  Some folks strongly want a place where they can speak about their latest advocacy project; what is going sour on it and what is going great, because maybe their enthusiasm and hope for any specific project is really what drives them and gives them purpose to continue life after diagnosis.  Others may be very uncomfortable with topic of advocacy, because either they feel be-littled for not having an advocacy project themselves, or because they have had conflict with the group associated with that specific project, or maybe they feel talking about a specific project is “tooting their own horn” and they wish to avoid perception of self-centered-ness, or maybe they simply have no interest in dementia advocacy.  So advocacy conversation has potential to un-balance the balance-scale of comfort level for some participants.

TRAVEL: Some folks are very interested in travel … others are not interested at all.  Still others strongly resent the fact that they have lost the ability and/or funds to make travel possible.  For those persons, travel-talk is very unhealthy.  So travel conversation has potential to un-balance the balance-scale of comfort level for some participants.

FOOD:  Everyone has some interest in food.  Some folks feel strongly about food, but can be sensitive topic.  Some members may be vegetarian, and feel almost-nauseous about topic of meat (especially hunting!).  Some members may have strong food restrictions, and may be attending specifically to take their mind off their desire for food in general, or a specific food.  Several members have lost the ability to taste almost all food, and again it is possible that could become source of resentment (altho that is one of the few complaints i have not yet heard from a member, and the possibility did not even occur to me until just now).  So food conversation has potential to un-balance the balance-scale of comfort level for some participants.

ADDICTIONS: Talk of any other potentially-adictive substance or behavior can be a possible problem, depending on the challenges of those in attendence (which may or-may-not be publically known).

Some of my own absolutely-no-interest topics are sports and television (no television in the homefor >25yrs), but someone else’s could be animals, or crafts.

So, again, almost every conversation has potential to un-balance the balance-scale of comfort level for some participants.

I frequently mention how life is like a balance beam scale, and i see group dynamics in much the same way.

So, personally, when i host a group of persons living with dementia, i try to avoid religion and politics, but if we avoid ALL the above potentially-problematic topics, then even much of the “fluff” topics are removed … and it is not a very meaningful group.  For me personally, even aside from religion, politics, and my specific food restrictions, despite interest in the specific person talking, after 3 minutes talk of weather, sports, or television … there are a few dozen other things that i remember i really need to do … or simply want to be doing.  Those times it takes self-discipline to stay in chat.  For me personally i would like a little less “fluff” and more intimacy in my conversations.  i want to hear what each person THINKS or FEELS about any specific topic — even if it is extreme “fluff” like the weather.  Then, how is the current weather impacting their symptoms – their relationships, their well-being.  I couldn’t care less about the generalities; personally i crave the specifics to better really KNOW that person i am in relationship with (thru the group).  But many folks are uncomfortable with verbal intimacy.  I need to keep reminding myself that my own needs and wants are far from top priority in group conversation.

So, unless instructed differently i think the other topics very permissable for SHORT periods of time (5-10min).  And talk of symptoms is practically unrestricted (except for making recommendations, or trying to “diagnose” another person without medical credentials and physical exam, which, like fear-mongering, are never ever permitted).  Again, that means host needs to be watching body language of attendees to make sure no member is feeling uncomfortable with topic — fidgeting, or avoiding eyes, or unusually distracted.  If so, then i try to guide conversation to some alternate topic.  I might ask someone who has not spoken much if they are comfortable sharing what is going on in their life, or share something new myself to change topic.  I often wish i had a list of possible alternate topics posted on side of my PC, along with my “cheat sheet” of nouns and names that are simply missing from my brain.

The same is true for folks who might be trying to speak.  i try to keep an eye on all members and if they open their mouth then close it again very many times, or show other body language that might indicate desire to speak, and conversation continues to flow over and around without giving them that opportunity, then i might wedge myself in, and ask if they wanted to say something, because otherwise they are likely to lose their train of thought (ie having productive input to group conversation).

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There will always be some amount of tension within any group of persons, even between person living with dementia and their partner in care, … and even within ANY  family, or any group of persons living with dementia.  That tension is part of each person being a different person, with different personality, history, goals, and challenges, … so we can only do our best to minimize that tension.  Just like any personal relationship, there inevitably WILL be negatives.

If we focus on the negatives of group relationship, then we will cease to benefit from the positive aspects of relationship.  Yes; i admit there are times that negative or stressful interactions out-weigh the positive or beneficial interactions of a group, in which case we need to look at whether we should approach someone with authority, to try and influence the procedures, or whether we should even try to keep that group relationship (again the balance-beam).  But until or unless that time occurs …

… We need to CHOOSE whether we focus on the “heads” or “tails” of the group relationship.

Since i was a child, as someone who requires very high protein for body health (along with low toleration of legumes such as soy) my perspective has been to “eat the meat and set the bones (negative aspects) to the side of my dish”.  Those negatives still exist, and it is important for health to acknowledge the “bones” and make accomodation in a safe, healthy, manner … but do not allow the “bones” to prevent the beneficial aspects of the food.  I thought of it many times when i was in school classes as a child, then dealing with the various negative aspects of adult life, and it is very important in all group relationships.

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… just my thoughts.

Related Links.
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>> https://truthfulkindness.com/2015/09/11/my-philosophy-on-personhood-and-dementia-person-personality-perspective/

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My Top Recommended Blogs & GROUPS >> https://truthfulkindness.com/links/plwd-blog-2018-rec/

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). 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 © 2018-07/17 txt was 4hrs on Jul11 + 6 hrs on Jul17 (w/help from husband) + 1hr for graphic. Tags are: dementia, group, PLwD, relationship.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Defining the Newest Communication Problems

… no real solutions yet, but first step to find coping strategy is defining the problem.  So here is our current status in that process.

Lots of stuff happening in my life right now, but want to update folks on what is happening in the dementia arena of my life also.

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extra problem is not only out-going words, – but understanding what is said.

Yesterday husband said something.
I had stopped what i was doing and was looking at him.

i told him that i could not understand what he said.
(i could understand each word — but they were not connecting to make thoughts).

He laughed and told me that my statement was perfect illustration of his point.

What he had said was that he felt like our communication had taken a drop in effectiveness,
and he was concerned.

… i guess he is right, LOL.
we need to find some extra communication strategies.  (Apr 29)

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Guy’s report (another time).  (i am typing as he is telling me what he wants me to write).

Lately you have been less resilient to break focus while working on project, in order to engage in conversation.
I realize that is probably because you dont want to lose track of your current thoughts.

In recent past i have felt it is necessary to schedule time (appt) where we can talk about items of importance or interest, so that she does not need to feel her train of thought is being derailed.  Now i ask for “When you get to a stopping point” … but then you forget, so i need to come back and ask again.

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Guy’s report of another communication challenge:

I told her I was sending link for news article “could you please check and make sure you got it, and that you are able to open it”.  I received an affirmative reply from Tru.  However, a moment later, Tru said “Got it.  I was able to send it out.”

But I discovered that “Got it” did not mean she received my email.
it meant she was able to configure what she had been working on before i spoke with her.
When i asked her “Could you open it” she replied
“oh, i just sent it off.”

Parallel conversation with similar subjects … we still dont know if Tru received email, or could open it.

So conversation was communicating … but in parallel world.
“I got it and sent it off” had nothing to do with my email going to her, but it sounded like she was talking to me. !!

If Tru seems to be really involved,
focussed on a project while i am trying to give her information,
just like any two sane adults,
we need to stop and somehow make certain that we are in the SAME conversation.

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… no real solutions yet, but first step to find coping strategy is defining the problem.  So here is our current status in that process.
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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). 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 © 2018-07/09. Tags are: communication, dementia, PLwD, strategy, symptom.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Recent Pages added 2018 June part2

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 on colored text, not the pictures.

Pages recently added to my blogsite are from:

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Michael Woods “Wounds” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/michael-woods/wounds/

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Personal Memoirs “Trip to DonnaKay” >> https://truthfulkindness.com/bnp/part-3/bnp-3d-2012-u/bnb-trip-to-donnakay-2004/

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Index for other contributions here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). 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 © 2018 June 25. Tags are: dementia, persons with dementia, PLwD.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Strategy of Electric Toothbrush

Tru here.  My abilities have been gradually decreasing for years.  This means adaptive strategies that have been productive in the past … become no longer productive.  Either need new adaptations for old strategies, or new strategies need brought in to meet new needs.  Most recent added strategy has been for dental hygiene to avoid mouth sores; electric toothbrush

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If i can see mouth in mirror, then i can use two hands in order to help toothbrush find my mouth,
but losing muscle control for where and how forcefully i am jamming toothbrush.
Brushing teeth involves multiple simultaneous movements, which is becoming increasingly difficult for my dementia symptoms.
This has created gum sores in ditch between teeth and cheek.
In video chat, a number of my friends have now purchased electric toothbrush, so i did also.

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With electric toothbrush, i no longer need to manage multiple SIMULTANEOUS movements for brushing my teeth;
i just need to move toothbrush to different parts of my mouth and the power element scrubs teeth and gums.
The vibration is a bit tickly right now, but i think my symptom progression is still early enough that i will adapt to that sensation — better than mouth sores.
If i get conditioned to that sensation now, might come in very handy to keep using electric toothbrush during later stages

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Toothbrush gives 3 bell-sound notifications at intervals, for moving to different sections of mouth,
then turns off after last 30-second interval.
So no more scrubbing enamel off my teeth because of over-scrubbing.

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If i think of a funny, uplifting closure, i will put it here.  But i have not thought of one yet.

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Related Links.
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 on colored text, not the pictures.

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Time & Energy Usage >> https://truthfulkindness.com/2015/07/20/time-energy-consumption-dementia-symptoms/

Teepa Snow recommendations for helping PWD brush teeth >> https://youtu.be/93ixNssks1c

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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). 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 © 2018-06/18. Tags are: dementia, hygiene, mouth, strategy, symptom, toothbrush.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Recent Pages Added 2018 June part 1

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 on colored text, not the pictures.

I will continue sharing from other PLwD, but with increase of symptoms, can no longer invest time and energy for sharing so many as in the past.
Pages recently added to my blogsite are from:

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Gord Settle “Catching Up” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/gord-settle/catching-up/

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Index for other contributions here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). 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 © 2018 June 11. Tags are: dementia, persons with dementia, PLwD.

MyFreeCopyright.com Registered & Protected

Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

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