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 + 1hr for graphic. Tags are: dementia, group, PLwD, relationship.

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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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Recent Pages added 2018 June part2

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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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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.
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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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Recent Pages Added 2018 June part 1

Right-click on colored text and selecting “open in new tab”,
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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.

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Need4 Nap

With my latest slide of abilities, one of my first strategies is daily SCHEDULED nap.

Tru here.
Sometimes i sleep one or two hours, and sometimes just lay in bed for an hour, relaxing body and mind.  i think either is beneficial for afternoon clarity.

As we age, our REM sleep is impacted, according to American Family Physicians (1999 May issue, chart above comparing sleep patterns for younger adults in comparison to older adults, and link below).  Addiitonally, my research shows the brain’s hypothalamus is likely to become impaired with many types of dementia, causing more sleep problems.  So it makes sense to supplement — as long as we can avoid impairing night-time sleep.

I extended my ability to continue employment by probably close to a year, thru daily lunch-time “power nap”.  When i was no longer able to keep up at work and releaved of my duties, i mostly quit napping except when ill or with strong meds.  Now my brain hits a wall about 8hrs into my day — so now began fore-stalling that wall by daily nap at about 4-6 hrs after i wake at 6am.  Then bed-time slow-down and routine for conditioning to sleep begins about 14hrs after first waking, with lights-out at 10pm (16hrs after i woke in the morning).

 

WebMD, which is recommended by several in my medical team, says ”

The length of your nap and the type of sleep you get help determine the brain-boosting benefits. The 20-minute power nap — sometimes called the stage 2 nap — is good for alertness and motor learning skills like typing and playing the piano.  What happens if you nap for more than 20 minutes? Research shows longer naps help boost memory and enhance creativity. Slow-wave sleep — napping for approximately 30 to 60 minutes — is good for decision-making skills, such as memorizing vocabulary or recalling directions. Getting rapid eye movement or REM sleep, usually 60 to 90 minutes of napping, plays a key role in making new connections in the brain and solving creative problems.

Here are some factors i keep in mind BEFORE i lay down for nap:

Turn sound off for Phone, and put rubber band on phoneto remind for turning sound back on.
Send text message to husband/care-partner, letting him know the phone will be off for nap (so he doesnt get concerned).
Light snack immediately before nap, to insure no blood sugar issues.
Potty trip for both self and dog.
Ear plugs.
pull shades (or wear sleep mask).
cuddly blanket.
Nap only before noon (4-6hrs into my awake hrs) in order to avoid even more sleep problems during the night.
Important to avoid transferring sleep-cycle to daytime, so i set an alarm for either 1 or 2hrs nap (depending on time availablty).

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All-in-all, i think scheduled nap is my next step in strategies to provide best productivity despite recent slide in Abilities.

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Related Links.
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best-practices for sleep >> https://truthfulkindness.com/2016/03/23/sleep-problems-again/

George Huba PhD “self-care of nap” >> https://hubaisms.com/2016/04/07/dementia-selfcare-101-a-mindmap/

Amer Fam Physician >> https://www.aafp.org/afp/1999/0501/p2551.html

WebMD >> https://www.webmd.com/balance/features/the-secret-and-surprising-power-of-naps#1

Interesting >> https://www.wsj.com/articles/the-perfect-nap-sleeping-is-a-mix-of-art-and-science-1378155665

* 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”.  Copyright © 2018 June 4. Time investment was: way too many hours over  five days for text, and two days for graphic.  Tags are: dementia, nap, PLwD, strategy, symptom.

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Doctors Sharing Dementia Diagnosis

Tru here.

May 31 is “anniversary” date for celebrating my 3-yr FaceBook friendship with Reinhard Guss, Dementia Lead for British Psychoological Society (BPS), and co-chair of UK Dementia Action Alliance (DAA).  Excellent timing for sharing what follows.

So VERY pleased to see the new booklet he and team have put together on topic of doctors sharing dementia diagnosis.

Truthfully, unable to understand most of the booket, but ever-so-pleased to see cover by  personliving with dementia, and italicized comments scattered throughout, from first-person perspective of those living with dementia.

Tremendously encouraged when i see a professional document
with input from Experts by Lived Experience !!!
Considering authors and input, 
i
am confident this document is tip-top excellent.

Link for this booklet is currently top left picture at this Link >> https://www1.bps.org.uk/networks-and-communities/member-microsite/dcp-faculty-psychology-older-people-fpop .
At this time, membership is not needed to access document.  Suggest right-click on photo of 37-page pdf, then select “open in new tab”.  This allows you to return to originalwebpage if so desired.

“… Sharing a life-altering diagnosis is inevitably difficult for the person with dementia and the family, so communicating the diagnosis well is very important. …” – excerpt from booklet.

 

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To Neurologists >> https://truthfulkindness.com/2018/05/01/2-neurologists/
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George Rook “Imagine …” >> https://georgerook51.wordpress.com/2015/01/13/imagine-a-different-world/
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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. Text Copyright by Truthful Kindness © 2018 May 31  Tags are: alzheimers, dementia, diagnosis, doctors, PLwD.

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Recent Pages Added 2018May part 2

Right-click on colored text and selecting “open in new tab”,
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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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Tommy Dunne “on Conversation” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/tommy-dunne/on-conversation/

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Non-dementia Family History page added : Memorial Day/ Joseph Pate Civil War >> https://truthfulkindness.com/about/life-other/family-history-index/ffp06-joseph-pate-civil-war-death/

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Index for other contributors is 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 © 2018-05/14. Tags are: dementia, persons with dementia, PLwD.

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Gifts from Flare

Tru here.  This one is another impromptu posting … just notes from past few days.

If you did not see it, my most recent entry is needed for context;  Symptom Flare >> https://truthfulkindness.com/2018/05/18/sx-flare/

Resulting thoughts after taking hot bath= Relax and quit pushing myself, Cry, Pray, and …

… and realize there is a gift involved from “symptom flare”.

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Symptom “flare” is very valuable PREVIEW for next stage of progression

what will be appropriate Crafts ?

what Mobility tools will work ?

what communication problems, so that can be on lookout for strategies.

types of music and movies that are helpful ,rather than producing more confusion.

gives me an opportunity to prepare for symptom progression in a gradual way.
Compensation strategies and projects previously assigned to a symptom flare gradually become integrated into my “new normal”, then new lower-level strategies/projects need to be found for during the week after an event, or when symptoms are just in an intense stage.

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Thoughts from the Next day:

Today, looking back, realize what i was calling a “flare” has now lasted more than two months.  Kind of suspect that i will have some scattered better days, but probably this is basically my “new normal”.  So, grieve, accept, and work with what abilities i still have.

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Life is always a balance beam, with priorities vs time/energy consumed.

every time i realize my Abilities have slipped another rung on the ladder, i need to re-evaluate what i have on my plate of duties, in order to keep my best abilities, time, and energy for the roles and tasks that are top priority.
For me, that means, Creator, Family, self-communication, Dementia Mentors, and other dementia advocacy.
Keep needing to drop roles in order to continue, because time to do every task keeps increasing (even things like eating or bathing).

Always a precarious balance — because progression of symptoms is part of ALL dementia.
So … need to take another look at my daily priorities in light of “new normal” dys-abilities.  … but first i need to spend a bit of time to process and accept this.

i know that if i rush things … it creates added complications.

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UPDATE thoughts a week later:  One of the reasons i journal (especially with pictures added) is so that i can review my words, and see Life does not stay in the deep pits.
Not that our symptoms get BETTER
… but i think we learn new coping tools,
those around us learn new strategies
… and it is possible to become even closer with our “higher power”.

praying tools & energy for all of us dealing with dementia Life, and those who live with us.

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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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Blog Difficulties >>  https://truthfulkindness.com/2018/05/09/blog-difficulties/

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Bad-Day Indicators >> https://truthfulkindness.com/2018/04/09/bad-day-indicators-suggestions/

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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”.  Copyright © 2018-05/25. 4hrs invested/text + 2hrs/graphic.  Tags are: acceptance, change, dementia, PLwD, 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

Symptom Flare

Tru

Dontknow why symptoms are so much worse right now, but i do know that i am not the only one.  With Fibromyalgia, we would call it a “flare” — consecutive periods of time when abilities are dramatically lower becaus symptoms are dramatically intensified.  Dont know what to call it with dementia symptoms.

it seems like lately a number of my friends and i have just been extra ragged.  More exhausted.  Not just me, but also friends in Europe.  So truly no ideas on why … just know it IS.

So … symptoms are more intense, time frame for doing our “normal” tasks is even longer than usual, more likely to get extra frustrated on every little thing — because our abilities are lower than usual.

Walking and other movement less successful so more stressful.

Dropping more items that break.  Since i  cannot remember what is inside kitchen cabinets we removed doors, so that means MUCH more time in clean-up time when glass breaks.

Less successful in getting food/drinks all the way to my mouth.  Right now, wearing clothes guarantees those clothes will have food on them before end of day.

Less understanding of movies and reading.  Confident it will pick back up, so i am juist leaving them along for now.  if i was not using so much EXTRA time repairing my added mistakes on the other stuff, would spend some time doodling with colored pencils, crochet, or music.

For me, MUCH more challenge with audio communication right now.  (But then audio section of my brain was one of the first sections for dementia symptoms.)  Spent a good portion of my most recent Dementia Mentors’ chats just watching, because could not understand a word of what was said.  Could still see body language tho  ((smile)).  Still appreciate being part of the “family” — even tho cannot understand what they are saying.

much more audio hallucinations lately.

Looking back, see that wrote about intensified symptoms during May of LAST year also.  In fact i see that i fell badly and lost sensations in left thumb last May.  Sensation never returned. Also iPhone STILL will not respond to “touch” movement with that thumb.

Emotionally, i am much more fragile right now.  Frequently feel like crying — probably frustration.

My iPhone makes sounds & no idea why because cannot find any cause.  Are they hallucinations ?? — no idea !!

Either the smoke alarm was going off this morning — or it was more audio hallucinations.  No idea. but i ran around the house checking everyhting i could think of.  Did not find anything on.  Unfortunately i had hallucinations of that hot acrid burning smell numerous times every hour for 3 years — so suspect i lost the smell sensor to smell real smoke.  Then sound of large animal moving things around on porch — but dogs show that actually there is nothing on porch.  ugggh !!!  Now smoke alarm going off again .  I think i will put in ear plugs, cover up0, and go take a nap.

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That is Life.

So what do i do about it ??

Have someone check the fire precautionary devices.  (Relax about nomenclature; work-around the noun with verbs for what the item does.  Work-around the names, with how the person is associated with yourself. etc)

Gear down to COMPOUND Low in everything.  Compound Low is very low “crawling” gear — for pulling heavy loads (like my cognitive abilities right now, LOL).

Top priority = eat, drink, & relationship with family/pets and Creator.  Cannot handle much more than that right now

Right now, i have stopped trying to read all my FaceBook notifications from friends with dementia (>150/day).

Continue attending video chat, even if i do not understand what folks are saying.

Extra Naps (but not past noon — to not interfere with sleep pattern)

Take out my “Future Creativity Box” this week-end (that i keep for when abilities are at Lowest Levels).

Get comfortable, then give self permission to have a good cry.  … and find the things that i still have ability to do.

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Husband care-partner has these suggestions:

nice long bath

take a walk and enjoy thi wonderful world

watch sunset and/or sunrise

play music

… and i can do this because my husband will take dog to training, and i will re-allocate my own dog-training time for quiet time on my own.

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And gonna go ahead and post this now instead of working on it further during week-end.  That way it is not pulling on my mind.  So even tho this is posted early and probably a bit scrambled, it is my “Truthful Tuesday” entry.

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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.

Kitchen >> https://truthfulkindness.com/2014/09/09/distorted-decision-making-in-kitchen/

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Last Yr, Tar Pit >> https://truthfulkindness.com/2017/05/29/walking-tar-pit/


* 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”.  Copyright © 2018-05/18. Tags are: dementia, flare, PLwD, strategy, symptom.

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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