Introvert PWD Need for Social Activity

819 blog flame 5in100ppi

♪ silence is golden ♪  …  ♪ the sound of silence ♪

Summary: EACH  PERSON’S  NEEDS  ARE  DIFFERENT.
Yes; we all need social interaction.  However, As an introvert I have always had NEED to have some amount of my day that is alone-time away from others but not feeling cooped-up.  As an introvert person with dementia symptoms and complicated by audio-scramble of every sound, the majority of my day now NEEDS to be without sound.  Any interaction (especially any sound-interaction) needs to be sandwiched by a larger time period that I am alone in the silence.

Tru here.  Have written on need to minimize background noise, but this is a little different.  Have been seeing many care-partner comments lately about need of social activity for persons with dementia, and I agree that social interaction is a need — for ALL persons in all stages of life — and with dementia symptoms most of us back away from social activity due to many factors.  But I think it is important to remember the PERSON in this issue; each person has differing needs for social interaction.  Especially in energy source.

So what is “extraversion” or “introversion”, and why does it make a difference in my dementia symptoms or how they need to be handled?  Extraverted persons mostly gather energy in social activity … but introverted persons mostly SPEND energy in social activity.  Big huge difference in how much and type of social interraction is needed.

Enjoyed learning about Myers-Briggs typology many years ago and it was easy to spot my introversion characteristic. ((Excerpt below describing introversion characteristic is from http://www.myersbriggs.org/my-mbti-personality-type/mbti-basics/extraversion-or-introversion.htm but bold font added by me))

Extraversion and Introversion as terms used by C. G. Jung explain different attitudes people use to direct their energy. These words have a meaning in psychology that is different from the way they are used in everyday language.  Everyone spends some time extraverting and some time introverting. Don’t confuse Introversion with shyness or reclusiveness. They are not related.  ((If INTROVERTED like me, then …))  … I like getting my energy from dealing with the ideas, pictures, memories, and reactions that are inside my head, in my inner world. I often prefer doing things alone or with one or two people I feel comfortable with. I take time to reflect so that I have a clear idea of what I’ll be doing when I decide to act. Ideas are almost solid things for me. Sometimes I like the idea of something better than the real thing.

LOL: so that’s why I keep finding blueprints I created and fabric patterns I created … without the finished product.  I truly do enjoy making the plans, reviewing the plans, and gathering supplies.  Began creating architectural blueprints during high school and never quit.  Never was a home created until I was almost 50 years old — but that home was built from all MY blueprints for plumbing, foundation, etc, and I received a phone call from County engineer with compliments for job well done (( smile )).

I can be a social butterfly when forced into large social context; I sat with a different “group” of students almost every day of the week during high school because I just truly didn’t fit-in entirely with any one of them and yet got along with almost all students  — but it was high-cost to my energy level.  I host Dementia Mentors’ video chats almost every day of the week because those relationships are crucial to my own well-being, but chit-chat definitely is high cost to my energy tank, so many times it is more draining than reviving (depending on subject and content on that particular day).  On ANY day tho, it provides a feeling that what I am going thru — what I am experiencing, is “normal”  — normal for a person with dementia symptoms.

Instead of gaining energy from active involvement in events and being energized with other people, interactions instead generally drain my energy.  I consider Relationships to be what makes life worth living, so these  interactions are crucial to my well-being  … but they have a high energy cost so must be monitored.  This has been a challenge at different times of my life but now seems to create extra problems.

Background Info:

Some folks consider Extraversion / Introversion as a bit of quackery but …  In the article, “Are the Brains of Introverts and Extraverts actually Different”, Discover magazine put the distinction as

When Carl Jung coined the terms “extrovert” and “introvert” in the early twentieth century, he emphasized that introverts aren’t necessarily shy or insecure—nor are extroverts necessarily empathic or loving. The distinction between the two, Jung wrote, lies mainly in the fact that introverts get exhausted by social interaction, while extroverts get anxious when left alone. Introverts need solitude in order to recharge, while extroverts draw energy from socializing.  …   

… A  2012 study by Harvard psychologist Randy Buckner found that people who identify as introverts tend to have larger and thicker gray matter in certain areas of the prefrontal cortex, a highly complex brain region associated with abstract thought and decision-making. People who identify as strongly extroverted, on the other hand, tend to have thinner gray matter in those same prefrontal areas—which hints that introverts tend to devote more neural resources to abstract pondering, while extroverts tend to live in the moment.  …

… (Using Ritalin and films, a 2013 study at Cornell University researched …) … crucial difference between the ways introverts and extroverts process feelings of excitement. Extroverts, the researchers believe, tend to associate feelings of reward with their immediate environment, whereas introverts tend to associate them with their inner thoughts—or perhaps interpret them as anxiety rather than excitement.

Above excerpts are from http://blogs.discovermagazine.com/crux/2013/08/27/are-the-brains-of-introverts-and-extroverts-actually-different/#.V0uaJ5_2ZaQ

Psychology Today, at https://www.psychologytoday.com/blog/thrive/201205/are-extroverts-happier-introverts says (bold font added by me):

… The brains of introverts and extroverts are wired differently! The front part of introvert’s brains are most active and stimulated by solitary activities while the back part of extrovert’s brains are most active. This part of the brain is stimulated by sensory events coming in from the external world! In addition, a chemical called “dopamine” is released by our brains whenever we experience something positive. It’s an automatic reward center and makes us feel good! Extroverts need more dopamine to feel an effect, whereas introverts have a low dopamine threshold. They don’t require a lot of stimulation to feel rewarded.  …

It is said that USA gives preference to those with extraversion tendencies, and that was even shown by a “reading test” while I was in younger elementary grades; my multiple choice preferences to spending time alone in thought instead of with groups of children were marked as “wrong” answers !  This triggered one of my first “journal” entries as a child.  I had to do something with the anger generated so I wrote about how I didn’t seem to have the right to FEEL differently than the teacher thought I should feel.  LOL) … but some results show that human population is instinctually (before pressure from culture or circumstance) generally somewhat close to 50-50 between extraversion and introversion tendencies.  Those of us with introversion needs should be considered as part of the population by care-partners and care facilities.  It is important that our needs are not over-run by the generalization of “need for social interaction”.

So when care-partners discuss need for social interaction these are some of my concerns:

  1. INTROVERSION:  What were the social interaction needs of this person BEFORE they developed dementia symptoms?  How much were those introversion / extraversion characteristics pressured by culture or circumstance (ie job) that are now no longer pressuring?  Personally, I am an introvert and have always needed minimum 2 hours silence or at least 2 hours by myself every day in order to refill my ME tank (and as a working mother that was difficult to maneuver — needed to include extended bathroom breaks LOL).  With dementia symptoms, this has become much stronger, so that now my best balance is only about 2 hours per day in interaction with others.  For me, those two hours are filled with family interactions and Dementia Mentors’ chats.  Both of those interactions are supremely important to my well-being, but in order to do them I NEED to have silence and few sound interactions with most of the rest of my day.  Music or movie (which is double-dose with music and words) are wonderful but they cannot be in addition to Dementia Mentors’ chat — they must be instead of my Dementia Mentors’ chat or family interaction.  Yes — for me, music is an interaction.  If mealtimes are with others (and I encourage that) — then it needs to be considered as “interaction” time.  In fact, if multiple conversations are going at the dinner table it becomes totally unfeasible for me.  One asset is that our house is tremendously well-insulated — then has wrap-around enclosed porch further insulating, so that even tho we live short distance from highway, even siren is un-heard inside the downstairs.  Upstairs is a different matter, but then also gives the wonderful sounds of fog-horn, bell-bouy, local seals and seagulls making noise.
  2. EXTRAVERSION:  It could be that if a person was very social before they developed dementia symptoms, these social needs may become even stronger after they develop symptoms, as a need to re-fill their own ME tank, but each person is an individual and has different needs.  (Again excerpt is from http://www.myersbriggs.org/my-mbti-personality-type/mbti-basics/extraversion-or-introversion.htm))  IF I were an extravert then this quote might be true (but it is NOT true for me).  “I like getting my energy from active involvement in events and having a lot of different activities. I’m excited when I’m around people and I like to energize other people. I like moving into action and making things happen. I generally feel at home in the world. I often understand a problem better when I can talk out loud about it and hear what others have to say.”  Obviously, these things are NOT true of me.  It is important not to super-impose or over-generalize social needs to where those of us who are strong introverts must go “wandering” in order to find the individual quiet time in a few stolen moments which we actually need to have as majority of our day.
  3. ACTIVITY:  My own silent time is mostly filled with activity — there are always things I want to be making, doing, or writing.  (And I have boxes of supplies for selection of activities that are lower on priorities because I am postponing them until my cognitive symptoms or other symptoms like tremors have advanced to point I can no longer do the things I am currently doing.)  I rarely remember being bored in my entire life.  I don’t know whether it shows outwardly, because I mostly prefer subtle music, subtle colors, subtle flavors, slow pace, ((LOL; I wear purple because of dementia advocacy — my instinctive preference is the subtle rose color which fills my home))  … but for me relationships are the pinnacle of life.  Relationships are what makes life worth living.  So actually I am an intense person in almost all interactions that I allow in my life.  Whatever I am doing, be it interaction with others in song, in words vocally, with words on paper, with graphics or pictures of some type, with animals, with the unseen forces, or with my husband, — it is a relationship interaction and thus requires my single-minded complete focus and attention.  If I am interacting with you then I am looking into your eyes and separating my thoughts from any thing and any one else in life but YOU.  I am not thinking about my future words, or even my own past or future.  I am thinking only about you and our relationship.  Maybe due to that intensity, there must be a part of each day that am non-active and non-interactive  — alone with just my own thoughts.  No DOing-ness but just BEing-ness.  … and I think that need may be increasing.

 

Having others around is a distraction in my cognitive process.  Even if they are not trying to talk with me, they are IMPORTANT to me and I am not able to focus exclusively on whatever my project is.  The more other people are around (even quietly and trying not to interrupt my train of thought) then it is more likely I will need to actually go walking to a separate ALONE location for longer period of time to feel alone without feeling cooped-up.

 

Summary: EACH  PERSON’S  NEEDS  ARE  DIFFERENT.
Yes; we all need social interaction.  However, As an introvert I have always had NEED to have some amount of my day that is alone-time away from others but not feeling cooped-up.  As an introvert person with dementia symptoms and complicated by audio-scramble of every sound, the majority of my day now NEEDS to be without sound.  Any interaction (especially any sound-interaction) needs to be sandwiched by a larger time period that I am alone in the silence.

My online group recommendations are listed at Dementia Symptom Perspectives’ FaceBook page >>  https://www.facebook.com/dementia.symptom.perspectives/posts/1269744196375187

Here is a great article.  It does not even discuss dementia symptoms but merely neurological science of brain. Sharing on my personal page because it is a crucial concept in my PERSONAL world.  http://www.lifehack.org/377243/science-says-silence-much-more-important-our-brains-than-thought?ref=fbp&n=1

No Such Thing as BACKGROUND Noise at >> https://truthfulkindness.com/2015/12/22/drt-background-noise-2015-12/
* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2016-05/30 with 7.75hrs on txt + 5.25hrs on graphic.  Search terms: person-centered, dementia, introverted, symptoms, social activity;

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First Time of Where am I

 

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Tru here.

First times for new symptoms are always difficult – the realization that you just slipped a notch.

Yes, it is late; I was starting preparations for bed.  Husband and I had enjoyed two hours of time together watching the show, “John Adams”.  Fifteen minutes ago I walked in the bathroom, turned on the light … and had no idea where I was.  For a moment nothing looked familiar, and I was extremely confused.  Where am I?  I forgot where I was and why I was there … just standing in the room in shock because I did not recognize where I was.

It only took a moment and reality clicked back again.  I returned to the living room and hugged my husband … and then I cried.

It is scary to realize I am losing … everything.

(photo by Christine)

Similar in tone:

Melancholy Day at https://truthfulkindness.com/2014/11/10/melancholy-day/;

Loss & Grief CHOICES at  https://truthfulkindness.com/2015/08/18/loss-grief-choices-dementia-advocacy/

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”.  Copyright 2016-05/08.

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Misty Stenslie

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Tru here.  Another friend is gone; Misty Stenslie Claassen was 43 years old.  She made the above zendoodle for me in December 2015.

When you have many friends with terminal disease, it creates several side-issues of grief, and that is a subject that needs addressed … but that is not my topic today.

Recently discovered my friend Misty was no longer with us.  She and I shared background of tickborne diseases, dementia symptoms, love of art, and current tool of zen-doodles.  We both spent years in antibiotic treatment for various tick-borne diseases.  Myself, I spent 5 years with the best doctors money could buy and large expenditures of out-of-pocket expenses.  My memory is shot so I do not remember exactly how long Misty spent with antibiotics (for Lyme Disease) and anti-malarials (for tick-borne babesia), but her obituary at http://minnesota.obituaries.funeral.com/2016/05/04/misty-claassen/ says, “… After a painful six year battle with tick-borne diseases and early-onset Alzheimer’s disease, Misty Stenslie Claassen died peacefully at her home on Saturday, April 30, 2016. ”

Like many friends, she had what I call an “end plan”, and put it into service; “I wanted to leave this world before the march of Alzheimer’s took away all of my joy. It was not “suicide” but rather a choice to die with some dignity.”  She did not fear what comes next, but was looking forward to being free of the pain, confusion, terror, and other symptoms of her disease.  There had already been times when she looked in the mirror and didn’t recognize the person looking back at herself.  There had been times that, when waking, she didn’t know who the man in her bedroom was and felt terror.  She needed assistance for grooming, adult diapers, and felt lost or afraid if her care-providers were out of sight, even in her own home.  … So, she left this world in peace.
In lieu of flowers, her request is that we all do something to make the world better.  “Some of the causes I cared the most about were people in and from foster care, animal welfare, sexual/reproductive health, and equal rights for all people. Donations in my name can be sent to the Foster Care Alumni of America. Thank you. I love you all.”

As Deputy Director for Foster Care Alumni of America (which she founded in 2004), Misty wrote this at Fostering Perspectives; http://www.fosteringperspectives.org/fpv15n2/Stenslie.htm .

May her memory be a blessing. ❤

Links:

Obituary at http://minnesota.obituaries.funeral.com/2016/05/04/misty-claassen/;
“I Just Didn’t Have Anybody” May 2011 at http://www.fosteringperspectives.org/fpv15n2/Stenslie.htm ;
http://fixcas.com/scholar/Stenslie.pdf for Public Hearing on Prescription Psychotropic Drug Use Among Children in Foster Care May 8, 2008;
and half-hour tele-conference recording at http://www.nrcpfc.org/teleconferences/02-10-10.html for “National Resource Center for Permanency and Family Connections;
then, Foster Care Alumni of America is the the organization she founded and where she requested donations be made http://www.fostercarealumni.org/product/honor-misty-stenslie/ .

 

Wont Be Around Much

Tru here.  I won’t be around much for a while.

Some probably know that my MRI shows “mild to moderate cerebro-vascular disease”.  Probably had another slight stroke Thursday.  Suspect this is at least my fourth.  Sleeping a lot this week and will be avoiding any pressure in the near future.  Mostly avoiding my “work” of advocacy because I know (despite best efforts) I get wound up in all I “need” to do (long line of workaholics).  LOL

Will still be sending reminders for the four weekly Dementia Mentors’ chats that are during my own daylight hrs and attending chats whenever awake — as before, not the one that is like 1am my time (specifically for those living overseas).

Will probably still periodically participate in recorded Dementia Chats (Lori LaBey project) and in the advisory team for DAA in USA, but will be on limited basis for a while.  Will NOT try to keep track of new projects posted by Persons With Dementia symptoms.  Will NOT be on FaceBook hardly at all for a while so NO Private Messages will be picked up quickly … but I WILL be available email and text messages.

Will wait to resume exercise … but I am suddenly able to sleep again.  For past few months my average night sleep was back down to two or three hours per night despite best practices.  Now slept 18hrs Friday and 12 hrs Saturday.  We will see what today brings but I am going back to bed now.  Good night (again).

Stigma or Respect

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Tru here.  I was recently asked my opinion on how to stop stigmatizing behaviors and attitudes.

After thinking about this question I guess I’d like to change the perspective.

 When someone is singing out of tune it hurts, so it is easy for us to put them down – without recognizing in a positive way; Hey!  They are SINGING !

I believe that, for the well-being of all concerned to stay in the realm of reality, it actually IS important to recognize the negative aspects of life with dementia and deal with them – but also to (like the 40’s song) accentuate the positives wherever possible; the CAN do of life.

So often we address issues with “don’t!”, “can’t”, and “shouldn’t” … often creating more relationship problems than we solve.  For the stigma issue I would rather avoid that result.

One of our daughters is a very very basic teacher – a pre-school teacher.  She regularly reminds us that it may be a slower process but it is almost always better to give alternatives, redirect, or to … turn the behavior upside-down and request the OPPOSITE behavior.

In this case, I suggest we change the conversation from how can we “avoid” stigma for Persons With Dementia … into how can we ENCOURAGE respect for Persons With Dementia?

For me personally, that is why I spend a good part of each day gathering, categorizing, and sharing projects from Persons With Dementia; the products from those with diminishing cognitive abilities may not be Earth-shattering, but a Person With Dementia can be held up as a Mentor, as a Resource, as an Author, as an Artist, even as an ENCOURAGER when they smile.  Last year my friends and I created a “Success Stories” booklet, and it reflects the fact; we each have an appropriate level of “success” and the point is … Each human is worthy of respect.

Personally, I would rather not see respect DEMANDED because that, in itself, to me feels demeaning.

I would like to see the conversation change from a more politically-controlling conversation into a more positive context.  It is really simple and true of all humanity; we ALL need to receive respect … and Persons With Dementia are no different.  You know the song; R-E-S-P-E-C-T.

Appropriate Links (in the order I found them when searching thru my records):

Richard Taylor at https://www.youtube.com/watch?v=nyp8rgH4MtU  &  https://www.youtube.com/watch?v=-1iEbm44S70 ;
Harry Urban at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/advocacy-pt-prspectv-2015-nov-dec/ ;
Christine Bryden at http://slideplayer.com/slide/4469695/ ;
 George Huba PhD at http://hubaisms.com/2015/09/07/do-not-assume-that-a-person-with-dementia-a-mindmap/ ;
Linda Pendergrass at https://truthfulkindness.com/index-persons-with-dementia-pwd/linda-pendergrass/july-2015/ ;
Michael Ellenbogen
at https://truthfulkindness.com/index-persons-with-dementia-pwd/michael-ellenbogen/july-2015/  ;
Cecil Ristow at https://truthfulkindness.com/index-persons-with-dementia-pwd/cecil-ristow/prejudice-toward-pwd/ ;
Faith Riverstone at https://stilllifewithdementia.wordpress.com/2015/07/15/stigma-welcome-to-dementia/ ;
Kate Swaffer at http://kateswaffer.com/tag/stigma/ ;
Ken Clasper at http://ken2clasper.blogspot.com/2015/07/dementia-and-advertising.html?spref=fb ;
Agnes Houston at https://vimeo.com/122528299 ;
Amy Shives at https://www.youtube.com/watch?v=cJ0xojJYsHc&feature=youtu.be ;
Kathy Ryan at http://www.irishexaminer.com/ireland/pain-of-stigma-a-reality-for-people-with-dementia-334525.html ;
Mary Beth Wighton at https://uwaterloo.ca/murray-alzheimer-research-and-education-program/blog/post/why-do-you-not-believe-me
Cindy Stolz-Odell at http://www.ftdnoflowers.blogspot.com/2015/08/why-can-no-one-hear-me.html ;
Brian LeBlanc at https://vimeo.com/136100073 ;
Jarem Sawatsky at http://www.jaremsawatsky.com/letting-go/ ;
Norman McNamara at https://www.youtube.com/watch?feature=youtu.be&v=WC4INldUvWc&app=desktop ;
Tammy Bellamy at http://www.northernlife.ca/news/localNews/2016/01/10-dementia-campaign-sudbury.aspx ;
Greorge Rook at https://georgerook51.wordpress.com/2016/01/14/downstairs-at-downton-hospital/ ;
Cynthia Guzman at https://www.facebook.com/dementia.symptom.perspectives/posts/1132227446793530 ;
Helga Rohra at http://my-klug-dumm.blogspot.com/2015/06/standup-speak-up-ein-leben-mit-demenz.html?spref=fb (written in German but option to read in English if you open with Google Chrome browser) ;

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text for this page took 2.5 hrs. +1hr finding links; (graphic not included in time); Copyright 2016-03/26.

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Sleep Problems Again

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Had not intended in writing for this blog this week, since I started my “family history” AND “spiritual Journey” blog and wrote in both of them this week. … But cannot sleep anyway, so might just as well write.

5am and another night without sleep; 0.00 minutes sleep. Actually I think that is still better than yesterday morning tho;

Suspect doubling my Aricept has been helpful for avoiding hallucinations and bizarre dreams but this night they slipped thru. Night of repeated icky horrid stuff and finally woke about 6am and stood in bedroom with my eyes open. To my surprise I was looking at two environments; one superimposed over the other. My horrid alternate reality was superimposed over the normal bedroom environment of husband, big dog, stuffed animals arranged on drawers of huge antique wardrobe, etc. (… or maybe normal was superimposed over alternate reality — don’t remember for sure.) It was my first experience of two realities at once. I walked about a bit, still in both realities, then got back in bed and cuddled up. Slept another 90 minutes and when I woke everything was normal — along with being late for my “normal” tasks.

Then last night and this morning, I just couldn’t sleep. It is not that I am worried about anything. I think, again, doubling the Aricept MAY be a factor in the intensification of insomnia this month, tho. My mind feels more active all the time … and there still is no “off” switch so it is more active at night along with more active during the day.

I am still doing all the “best practices” of:
routine before bedtime,
exercise no MORE than 3-4 hours from bedtime,
… and no CLOSER than 2-3 hours from bedtime (nothing like a schedule hmm?)
healthful eating patterns (when I remember)
drink plenty of fluids (I drink between half and three-quarters gallon because discovered few years ago I was drinking TOO much!)
less than 1cup (decaf) coffee,
but do not drink very much of anything in the later evening hours.
Checked again recently to make sure that some of the nutrients like potassium, calcium, magnesium, etc are in good balance. In fact, right now am taking extra powdered cal-mag to mix in drinks because I think Aricept consumes more and that seems to help the EXTRA cramps I get from the Aricept (but doesn’t seem to modify my “normal” amount of one to three nightly wake-ups with the horrid foot and leg cramps).

So I do all the right things … then I lay there for an hour or two, get up and do something relaxing (not looking at any kind of computer-type screen) for an hour or so, then go back to bed and try again. … and repeat. This morning, after 4hrs I went ahead and addressed a few issues on computer then tried again. Then just prayed, then meditated, then prayed some more, then got up to write this.

Nothing terrifically new and no real tips but it only took an hour and Who knows … it may HELP someone.

Links:

New blog (spiritual issues) intro at https://tlk4spiritual.wordpress.com/intro/;

Partnership With Time at https://truthfulkindness.com/2016/03/15/partnership-time/ ;

Impact or Terrors & Dreams at https://truthfulkindness.com/2016/01/19/impact-terrors-dreams/ ;

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text for this page took 1 hrs. ; Copyright 2016-03/23.

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Partnership With Time

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Thank you for consistency; being there this morning when I didn’t know what to do.

Tru here.  I think doubling my dementia medicine has been successful, allowing me additional reasoning abilities to have fantastic success on family history project during the weekend.  But yesterday was a disaster, with our argument then multiple foot cramps during the night.

By this morning I was thoroughly exhausted and not thinking clearly at all!

I knew it was currently 7am and I had only managed to get about 2hours sleep from walking the floor with pain from foot cramps.  I understood need to try for a little teeny bit more sleep before my 9:15 dental appointment but could not think clearly enough to know what to do about it.

So, despite the fact I knew he had been working on carpentry long into the night — I woke up my PARTNER.  Yes; we are “partners” in the care for me.

No recriminations.  There might have been some frustration for waking him from a sound sleep, but if so it didn’t show.  I couldn’t even put together the words to ask what I needed, but just reminded him that he needed to drive me to an appointment at 9:15 but I had not been able to sleep.  He asked what time it was.  When I told him 7am he calmly replied “set your alarm for 8am”.

That was what I needed.  Math story problems have been a huge problem for me lately and I simply could not figure out what the math problem was that I needed to do, then subtract the numbers in order to manage the time — I could do the rest and he did not try to do it for me.  I set the alarm and slept an hour.  Three hours sleep is a lot better than two (( smile )).

Applicable Links:

819 blog 20151026b 4in100ppi

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https://truthfulkindness.com/2015/10/27/symptom-math-problems/

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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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text for this page took 1.5 hrs. ; Copyright 2016-03/15.

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PWD Projects Matrix for Topics Oct 2015 thru Feb 2016

TLK 20160203sm blk w collr

Tru here.

I have much enjoyed my work on the Dementia Symptom Perspectives NewsLetter Links, and it has kept me mentally active which may have helped delay further progression of cognitive symptoms.  This  project has always consumed a lot of my time because it was right at edge of my abilities even when I started in 2014, and has progressively required more time, but now I must admit that I no longer have the ability to continue this project.

Therefore I am looking for alternate ways of publicizing links for PWD projects.  The FaceBook page for Dementia Symptom Perspectives continues as a cooperative project with myself and some friends (link for criteria at bottom of this page).  Looking for means of making my project matrix of links for past and current PWD projects available, but in such a way that it cannot be modified without my permission.

Instead, I expect much of this year will be spent in family projects and personal projects.  So don’t be surprised if you don’t see or hear from me very often.

Participation in Dementia Mentors’ projects will still be high on my priorities, along with some new advocacy efforts.  But this year I need to increase time devoted to family and personal life.  Aside from Dementia Mentors, my FaceBook participation will probably be minimal, but I will still be available for text messaging and video Zoom on my cell phone.  I will try to continue Truthful Tuesday blogs, but there may be weeks with no postings at all — and that’s okay (( grin ))

As a reward to those of you who have read this far, here is my working excel spreadsheet for topics, currently sorted by PWD name, only removing the private parts, so there are duplications from each time I shared that particular entry on a separate FaceBook page somewhere.  This is basically draft form so do not expect perfection.  This would have been a portion of the raw data contributing to the NewsLetter links for past four months, along with chosen blog entries from working blog list which is also listed below.

PWD 20160229 share4pdf2  <<<  is the spreadsheet, and blog list is here >>  https://truthfulkindness.com/links/

These are the categories I used in matrix:

A&C = Arts & Crafts
Advocacy as task/gift
Assistance “Care” Partners
Dx Drs Resrch & Progressn (diagnosis, etc)
Relationships (w/self, enviro – seen & unseen)
Rx “Cure” & Prevention
Sx & “tips” (symptoms & tips for those symptoms)
Etc/Multi
Notes

This particular matrix represents hours of work EVERY day during months October thru February, so please do not claim the work belongs to someone else.  Copyright for projects linked belongs to each Person With Dementia symptoms, but the matrix work belongs to me.  Truthful L. Kindness, current 2016- Feb 29.

Link for Criteria on Dementia Symptom Perspectives Links is here on FaceBook NOTES >>  https://www.facebook.com/notes/dementia-symptom-perspectives/update-re-newsletter-links/1227406810608926

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text for this page took 1.5 hrs. Preparation for sharing excel spreadsheet (eliminating private info) 3hrs; Copyright 2016-02/29.

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Symptom Changes

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Posted this four years ago today.  How have these symptoms changed ?

The notes below were compiled as part of trigger for doctor appointment.  I had cognitive decline when we first met 12 years earlier, and since that time he had also noted further cognitive decline, so ordered MRI along with appropriate blood tests.   After preliminary test he gave me tentative diagnosis of dementia summer 2012.  This week FaceBook brought status update to my attention:

2012-02/19  February 19, 2012 at 11:44am

What did I do yesterday?  Let me look at my calendar and find out.  What did I do this morning?  Until I look at my calendar I have no idea.  Did I eat breakfast, or feed the dog this morning?  I don’t know until I look at my calendar.  I see that I talked to my sister on the phone.  Oh yes; now I remember doing that.  What did she say?  I don’t know until I look at my calendar.  …

So please don’t ask me what I have been doing lately.
I don’t want to be snoopy,
but instead can we talk about what YOU have been doing?

Along with teaching children, research and public speaking were some of my top abilities before my memory was impaired.  Now it is strenuous to gather a single concept into a sentence of words.  But today I remember that yesterday someone else did it for me.  A few weeks ago I mentioned my perception of a certain section of Scripture to our worship Leader.  Yesterday, during the worship service, that concept was wonderfully developed and communicated to our group.  I don’t remember anything that was said by the leader, but I remember the emotions I had while listening and I appreciate the fact that she did it.  It is noted in my calendar.

This may change, but right now I am more likely to remember past circumstances or concepts that have a large emotional element, UNLESS I consciously tell myself “I need to remember this”, or “I will certainly remember that.” If I bring it from a subconscious action into a conscious action then it seems I am actually LESS likely to remember it, even if it has high emotions associated with it.

I am more likely to remember emotions or the “aura” of an event, than to remember circumstances or concepts.

I am more likely to remember the “aura” of a person and my concerns for them, than to remember events with them, or what they look like.

Words are difficult, and names are even worse.  Even names like the name of the month or the holiday are difficult, but names of people are absolutely worse.  It is often even difficult to “pull up” the names of my children – that is not saying I can’t do it, because I usually can; it just takes a minute.  I need to be aware of the need, and be in the process of remembering the name as I appear to be doing something else like listening or re-arranging something.  And that is extra exhausting because I have a really difficult time doing two things at once, and I consider listening to be a high priority in my life.  But I don’t want them to feel like they are so unimportant that I don’t even remember their name!

For the past several months I have avoided making coffee because I keep forgetting how to do it.  So I have a plan to LEARN again how to make coffee.  I will make a “wish” photo of my husband and me sitting at the table, with my new “Desert Rose” coffeepot (actually teapot) between us.  Then I will photo a clear measuring cup with correct amount of grounds, and clear coffeepot with correct amount of water.  I will put these photos on the wall near the coffeemaker.

I have now spent 3hrs composing this “note” so I think I will take a nap.

***       …       ***       …       ***

So what has changed in these particular symptoms, four years later — in 2016?

  • No longer able to keep family calendar and now it is husband’s job.  In fact I am no longer able to deal with numbers well enough to handle the finances either — entirely husband’s job now.
  • No longer attending worship at Shul because cannot remember Hebrew words, and songs are just a blur of sounds.
  • No longer able to babysit grandchildren (now 6 and 3 years old) without another adult present, because when something unusual or urgent comes up my brain seems to freeze  — and that can become dangerous.
  • Now sometimes not able to bring up names of grandchildren at all, and must ask.

In past three years also gained a psychiatrist on medical team, both in order to eliminate mood disorders as cause of cognitive decline (which has been eliminated as cause) AND to help keep me “adjusted” when began developing various types of hallucinations and vivid dreams that were difficult to keep separated from daytime events.  Those members of my medical team who have gotten to know me well have seen a slow decline in these four years.  My neurologist said “your declines are not in areas that are measured”.

… but I can still make coffee in my new motel-sized coffee pot — with pre-measured coffee packets which do not require measuring.  I may forget grounds.  I may forget water.  I may add water twice & end up with it all over countertop.  But even then, it’s just water so no drastic catastrophe.  (( smile ))

 

Note:  Coffee Maker is 4-cup “Mr. Coffee”.  My husband gets the motel-sized, pre-measured coffee packets from Farmer’s Brothers.  “I am sure they are available thru Smart & Final and other vendors for the service-industry.”

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text for this page took 4 hrs. Graphic 1.5hrs.  Copyright 2016-02/22.

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DRT for Communication: Erase / Re-Write Problems

819 blog 20160215 erase4Proj b 3in100ppi

SUMMARY:  Erase/re-write skills are malfunctioning, so I am poor at task-transition.  Suggest pre-planning with steps involved.  While project is on-going, whenever a change in task or physical location is going to take place, verbally state “Now (my name) we are going to change task/location …” … then pause before instructions for next step.

…       ***       …       ***       …       ***       …

DETAIL on Dementia Relationship Tip for Communication in Projects:  Pre-Planning and Task Transition

Tru here.  On-going process of communication problems for task completion.  Each attempt finds more communication problems so thought if I write them maybe we can remember to implement work-around.

Just like before she had symptoms, Grammy (who had dementia) and my mother (her care-partner) had a major project every day, whether it was canning, gathering wood, or simply laundry.  Usually Grammy’s participation greatly increased the steps or time necessary for the project, making a short project into a full-day project.  But Mom felt that, like their daily walk was necessary for her physical health, Grammy’s participation in “family” projects was very important for her psycho-social well-being.

Like Grammy, I enjoy participating in whatever the current project is; it makes me feel like I am more than a “consumer”.  Whether the project is house construction (our home is still very much “unfinished”), washing our almost-14-year-old Newfoundland dog, or simply putting clean sheets on the bed, I think it is healthy for all concerned if I can take part in “family” projects.

However, my “erase/re-write” function is malfunctioning, so I don’t transition well from one task to a DIFFERENT task in the project.  This creates problems for smooth processing of projects:

Trying to help wash dog but I am still stuck on your last instructions
and so I hear the words … but what you say is not registering
in such a way that I can put those words into action.

There have been repeated problems with this every time we try to wash the dog, so I took notes immediately afterward.

Suggested Scenario:

  1. Immediately before project begins, first step is to verbally review all the steps of project, physically going to any change of location.  Sometimes pictures are needed.
  2. Then, as example, if the project is washing dog, AFTER preliminary project review, you might start with my name and make sure you have my undivided attention before you state goal of task then specifically what my role will be: “I need the dog to stand and not move until we finish getting the soap on, so please stand at her head and … ” — then we start that task.
  3. When finished with that step you might say, “Now (my name) we are going to change task – (PAUSE moment for me to mentally catch up with your thought before you go on with instructions for next step of project);  “I want the dog to go inside and stand on porch while we towel-dry her behind, so please stand right there (mark or point to specific spot on porch) … and do not let her go past you.”  Note that after many problems with this we have discovered that if I need to move from one place to another place during the task then I often need something to stand on in order to remember where I need to be when moving from one place to the other — even if it is just two washcloths.
  4. When ready, “Okay (my name) we are going to change task again (pause) … I want the dog to go into house and lay on bed.  So please …”
  5. When finished, rejoice TOGETHER (( smile )).

…       ***       …       ***       …       ***       …

Summary Suggestions:
1) Go over the various steps together BEFORE project begins.
2) Use partner name before verbalizing fact that there will be a CHANGE of task or location.
3) PAUSE between preparation for task transition and verbalizing SPECIFICALLY what you wish partner to do during this next task.
4) Remember to CELEBRATE joint participation.

  • Remember I said that I have been making more mistakes?  Well apparently at some point of revision I pushed the wrong button and this blog entry went out as an unfinished piece … and with no graphic.  I didn’t realize it until an hour later (( growl-snarl ))

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text for this page took 3 hrs. Copyright 2016-02/15. Graphic 2hrs

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