My Craft Project this Week

Posted on September 22, 2015 by Truthful Kindness

Tru here. Photo is with my new crochet collar and cuffs (along with gift for grandson)

It was birthday for self and grandson so I have spent a week on things other than dementia advocacy.

Entertainment: I watched more episodes from season two of the show “Person of Interest”. Surprised that I can still appreciate the show. So often addition of sub-plots create so much confusion I am unable to continue watching a show past the pilot. This show has added confusion from flashbacks that interrupt and confuse my continuity of story line. Usually I am NOT able to integrate the flashbacks in the “current” story, but can still re-gather the story line. But now the flashbacks are becoming a problem in my enjoyment of the series (or maybe the sub-plots are becoming too intrusive). Don’t know, but will probably enjoy watching season one many times over.

Family History: Popped back in to my series of family trees on http://www.ancestry.com, and have lost how to do what I was doing. If I don’t invest some time in that project soon, then I will lose ability to do it, so need to invest a month of time and membership fee hoping I can retrieve what I was doing. Genetic history at http://www.23andMe.com has turned up a couple more good possibilities; wish I could remember what to do when the possibilities turn up.

Crafts: My main project was to crochet a collar and set of cuffs for Autumn/Winter. This is my 5th attempt at making cuffs — and this time I finally succeeded. Coping mechanisms: Keep simple instructional videos from youTube handy for when I forget how to do stitches. Use only multiples of 3, 7, or 12 stitches, so if it looks like I have been doing only a few stitches then it must be 3, or if a lot then it is a multiple of 12. Cannot keep track of which direction I am going when I get interrupted, so every time I change direction I move my “stitch marker” ( from http://www.clover-usa.com/en/best-sellers/140-locking-stitch-marker.html ) to mark beginning of new row. That technique successfully avoided my problem of doubling-back instead of finishing each row.

Related blog entries:

…

Arts n Crafts Intro at https://truthfulkindness.com/2014/10/02/arts-crafts-dementia-intro/;

…

Crafts I Personally Use https://truthfulkindness.com/2014/10/09/crafts-i-personally-use-for-dementia-symptoms/;

…
If you want to check out some of the other blog items, I suggest the “Crucial” category at the bottom of the blog window.

Writing notes: It is amazing to me that such a simple little blog piece could require so much time to put together. Three hours to write less than 20 sentences ! (Of course spent close to an hour trying to remember what to call those jump-back-in-time scenes in the show. Without some sort of search terms, finding an applicable set of words is difficult. I can spend a lot of time in trying to find my words. This week “sub-plot”, “flashbacks”, and “stitch-marker” were the problem terms.)

* 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 clinical diagnosis is Mild Cognitive Impairment. I carry copyright for this article on 2015-09/21, which took 3hrs. (Doesn’t seem like it could possibly take that long, but that is what it took, plus an hour to get satisfactory photo.)

Healthline

Personality Development Philosophy

Posted on September 11, 2015 by Truthful Kindness

Tru here.
This is my personal philosophy, vocabulary and thoughts on changes in the three “P”s: “Person”, “Personality”, and “Perspective”, based mostly on personal observational analysis of myself and those around me, but with some perspective from academic studies and my own DisAbilities and Dementia Symptoms.
My definitions may need revision, but these are my thoughts.
In my definitions, dementia does not have ability to change the “person”, but can highly influence the “perspective” and perceived “personality”.

Factors for PERSPECTIVE

PERSON: In my definition, “personhood” is combination of genetic and spiritual characteristics which are unchanged from birth (and perhaps even from conception). To change any of those characteristics is to truly change the nature of the “person” who exists.

1. Spiritual influence on our “person”: Much speculation and theories on existence and influence of spiritual aspect to the basic composition of our “person”, and I consider it extremely important, but prefer to avoid that discussion here.

2. Genealogical influence on our “person”: We are discovering much about how our DNA influences not only the seed and roots of our being, but also the ways we behave, and even how the experiences of our ancestors have modified our DNA, and the factor of how we handle our own experiences will modify the DNA for our decedents in the future. I think that is an important conversation but again, I prefer to avoid that discussion here, only acknowledging that it is extremely important in the big picture. (member 23andMe.com altho don’t understand much of it anymore)

PERSONALITY: From the seed of spiritual and genealogical “person” grows the “personality”. I realize there are many different academic theories on personality. The one I have most investigated has been Myers-Briggs (in which I am INTP). But that is also a conversation for another time. If I recall correctly, it is said that the term “personality” has Latin root of “mask” – that which is covering or seen by the world. Our motivations, values, and attitudes create our behaviors which are seen by others, creating other’s perception of who we are, and also highly influencing who we see as “self”. I have forgotten the term for our own perception of self, and altho I consider it very important, for this project I am merging it into category of “personality”. My current thought is that the huge difference between “person” and “personality” is how we experience and deal with the changing events in our life.

Life Experience Events as greatest modifying factor to changing PERSPECTIVE:

Note: I give Relationships a separate category in “Life Experiences”, because I consider them so very crucial to attitudes, motivations, and values, along with Health. Imagine there are many more categories which could be included, but I consider these two the most crucial.

Note: Pleasure and Pain during events from first five years of life probably have greatest impact on development of our attitudes, motivations, and values during life. My personal theory on why that is true … is dissipation; we are experiencing so many more events, in so many more categories of life that are becoming important to us, that as we develop, the impact of any one isolated event decreases in proportion to the added events we are experiencing in present, and have historically experienced in past for context.

1. Health: I believe health (Emotional health and Mental health along with many other Physical health arenas such as neurologic, muscular, and Sexual) is crucial to our developing attitudes about self and others, motivations, and values. With the various gains and losses in different health arenas strongly contributing to our perspective at any given moment. Important to consider that brain systems must provide energy transportation and storage in order to make CHOICE of responding to change in positive ways.

2. Relationships: I believe relationships (our relationship to self, spiritual world, family, friends, acquaintances, animals, plants, and environment seen and unseen) are sometimes of even greater impact than health issues. Communication and relationships are the building blocks for family, community, and the world.

As we grow older we can usually gain a certain amount of control in CHOOSING our response to Life Experiences, but the ability to choose that response, and the tenacity to follow thru is probably highly influenced by current conditions in the other three realms of influence. The unpredictable swiss cheese of dementia symptoms can highly influence some of these abilities, and I think that needs to be considered.

In my definitions, dementia does not have ability to change the “person”, but can highly influence the “perspective” and perceived “personality”, due to brain systems of energy, transportation, and storage, along with loss of context in ALL categories of life, and the influence on mental health issues like hallucinations, and delusions. Sadly, I think loss of relationships is another frequent cause of personality change in dementia, especially if patient is repeatedly refreshed on the death of loved ones who are not yet dead in the patient’s “perceived reality” ** (in contrast to “consensus reality” where everyone else lives). Even if loving relationships continue to surround the person with dementia, since dementia symptoms slowly deteriorate context in all categories, it is common for context of those relationships to fail. Both my grandmothers continued to recognize that relationships with the people around them were important. Each knew they loved and were loved by these people — but they had no idea of context; who these individuals were.

** My use of “consensus reality” and “perceived reality” are from excellent book “Deeper into the Soul; Beyond Dementia and Alzheimer’s Toward Forgetfulness Care” by Nader Robert Shabahangi, PhD

*** P.S. on Writing process: We all get discouraged with the effect of dementia symptoms. I am accustomed to tracking my time due to working for an attorney (and when I was Office Mgr always requested time tracking at least 1week several times a year in order for each employee to become aware of where they were investing their time).
But if you have dementia symptoms then you know how it is; work on something for a while. Get interrupted and then spend lots of time trying to figure out what you had in mind.
My original thought led to 6 different ideas I was trying to pull together – with 6 pages of “spider” pictures and writing. (not complete mind maps, George Huba , but just spiders) You know – write and discard. Try to condense and make sense. Discard and try again.
Get interrupted and spend more time trying to understand what each idea was again, then remember each idea long enough to figure out how these ideas went together again (and what was my point?? … Did I even have a point that makes sense?).

This was probably the most complicated blog entry I have done without help.
Took break of half hour for video chat. Half hour for this and half hour for that. So 7:30am sat down with all my previous notes, and after interruptions finished at 9pm. I was in tears twice and almost gave up on this blog entry many times, because it took so much time to figure out what I was trying to say — over and over again. Each time my stubborn streak kicked in and said “… but you must have had a point to all this!! There was something you were trying to convey wasn’t there? what was it? You won’t give up and make it all a waste of time? How many more times will thoughts be flowing enough for you have the chance to do something like this? Then back to: How does all this fit together?”.

If YOU are writing, then when you get lost, frustrated, and feeling hopeless to pull it together then maybe you can give it another try.
I was really scared to let much time go in between attempts, but figured if I had to leave it over night, then I would hand off my notes and spiders to someone else and ask for help.
What YOU have to say is important !!

…

https://truthfulkindness.com/2015/06/07/self-identity-am-i-still-me/;

…

https://truthfulkindness.com/2015/01/26/hole-in-my-self-control/;

…

https://truthfulkindness.com/2015/09/01/best-of-person-with-dementia-pwd-gone/;

…

https://truthfulkindness.com/2015/08/18/loss-grief-choices-dementia-advocacy/;

…

UPDATE with Another interesting Link at https://getpocket.com/explore/item/scientists-say-your-mind-isn-t-confined-to-your-brain-or-even-your-body .

and (quite esoteric but very interesting) >> https://qz.com/1184574/the-idea-that-everything-from-spoons-to-stones-are-conscious-is-gaining-academic-credibility/ .

“Crucial” entries are here >> https://truthfulkindness.com/category/important/crucial/ .

. * Admin issues: SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”. If you put your eMail address there you should get an eMail each time i write a blog entry. If you have a WordPress account, Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** … If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current clinical diagnosis is Mild Cognitive Impairment. I carry copyright for this article on 2015-09/10, which took 10hrs to finalize AFTER previous 5 days of notes, +1.5hrs. on graphic . Update 2020-09/20, and 2020Oct24. Tags: genealogy, health, life experience, personhood, spiritual, writing

***

Healthline

Change

Posted on September 8, 2015 by Truthful Kindness

CHANGE is in the air.

Tru here. This may simply be a huge reaction to the change of season, but the last time I felt this intensity of impulse to prepare for change was a few months before we found out I had Lyme Disease. Tick-borne diseases had been affecting my life for more than 30 years, but what followed was five years of hell from Babesia and Lyme treatment. Five years of constant nausea and inability to participate in personal or family activities.

Don’t know what is coming; may be personal, may be collective.
May be mostly a positive change, but may also be a huge challenge.
… or it may simply be Autumn ! (( smile ))

Don’t know what is coming, but I am listening and applying this “premonition” to prepare for change, in that I am going to back up from my tremendous outflow of energy and time output to online dementia issues.

BLOG: I still intend to blog, and still hope to share pages of writings from others, but whether I will be able to continue my “Truthful Tuesday” predictability is questionable.

NewsLetter: https://paper.li/f-1408973778 I will still gather whatever writings and projects are easily gathered, and post the links monthly in Dementia “Symptom Perspectives”, but I am not going to spend near as much time in the efforts. I will still gather at least one entry from each of the 70 blog writers on my list who writes during that interval, but I will probably not add to that list at the rate that I have been adding in the past … and folks may find the postings are not nearly as “current” as in the past months, because will not be spending the huge number of hours in preparation. At beginning of year I changed NewsLetter format to monthly (but at that time I had less than half the number of blog authors I was reviewing each issue). I may change it further if I think it could help time-energy investment. To read each blog produced during the month, in order to pick one or two for NewsLetter, is actually a huge outlay of time and energy, and I will be looking for ways to further conserve my energies. And several authors do not share their writings in one location, so I have needed to search online for their most current works. I will cease investing those extra hours and focus on authors who have their work as an established “blog”, and on those who contact me with material they wish to share.

FaceBook: https://www.facebook.com/truthful.kindness Mostly I will miss things that are posted on FaceBook, unless they are in Dementia Mentors’ memory café, or unless posted as comments to most recent status updates on my own page. “Tagging” my name on FaceBook will be mostly useless, as my notification list is so long that even now I miss several hours out of each 24-hour day. So when I decrease FaceBook hours, many more notifications will fall out.

Personal Message, email or Phone TEXT is the way to contact me, altho I will be monitoring comments on blog entries also.

…

Made current revision to “Re-blog of Diagnosis Issues” at https://truthfulkindness.com/2015/05/18/re-blog-diagnosis/ ;

…

Focus on Essential Priorities at https://truthfulkindness.com/2015/02/24/dementia-change-priority-pathways/ ;

…

If you want to check out some of the other blog items, I suggest the “Crucial” category at the bottom of the blog window.
* 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 clinical diagnosis is Mild Cognitive Impairment. I carry copyright for this article on 2015-09/08.

Healthline

Is “Best” of Person With Dementia (PWD) GONE ?

Posted on September 1, 2015 by Truthful Kindness

This is September 1; first day of World Dementia Awareness Month in 2015. My husband took this photo three months before Grammy died with dementia. She rallied terrifically during those last hours of our last Thanksgiving visit, and was waving good-bye as we walked thru the snow and out the gate to leave. Reaching out to us … altho she did not remember who were. She remembered that we were important to her.

Lately have seen the “Alzheimers Poem” posted frequently, and think it largely helpful (posted at http://www.virgin.com/richard-branson/remember-me and written by “Barbara”, who had dementia and was partner to Richard Branson’s “Uncle Charlie”) … but I do have a caveat to add, in regards to my experiences with Grammy and dementia.

ALZHEIMER’S POEM

Do not ask me to remember,

or try to make me understand,

Let me rest and know you’re with me,

Kiss my cheek and hold my hand,

I’m confused beyond your concept,

I am sad and sick and lost,

All I know is that I need you to be with me at all cost,

Do not lose your patience with me,

Do not scold or shun my cry,

I can’t help the way I’m living,

Can’t be different though I try,

Just remember that I need you,

That the best of me is gone,

Please don’t fail to stand beside me,

Love me till my life is done.

* * * * *

Appreciate many parts of the appeal above … but I am saddened that Barbara felt “the best of me is gone”.

Altho my grandmother probably felt the “best” of her SELF was gone, I do not feel that the “best” of my grandmother was gone in her later stages. Far from it!

The ability to think thru her responses to life – to make choices that reflected memory and consideration for the unique circumstances of the history and context of her listeners, was gone. She knew these people were important to her – she knew we loved her and she knew that she loved us, but could not remember who we were individually. Her context for those around her was gone.

Her context for who she was and what she wanted … was gone.

The ability to delay gratification was gone.

Those things are almost always gone in later stages of dementia.

But her visceral response to life was NOT gone.

That last Thanksgiving, Grammy was sure that “Bindy” (my childhood nickname) was a little toddler out in the snow. She was determined that we needed to bring “Bindy” indoors next to the stove to get warm. LOL She did not recognize me, yet was definitely thinking of me and loving me in her usual helpful manner that was at her core – the essence that made Grammy who she was. (( big smile ))

She may not have remembered who I was, but she was very upset that I rejected her gift of back rub (which often creates pain with my fibromyalgia symptoms). She wanted to hold hands — almost all the time. She knew we were important to her and she wanted to be touching us. She was constantly trying to give and do for folks, even if the context was often “inappropriate”– because the context was missing for her. Her enthusiasm for life was a gift to all of us, until the last day of that life.

Having my grandmother as a Dementia Mentor (even if only in my memory), has been a tremendous source of hope and example. In my final days I hope the same can be said of me.

Related entries:

…

https://truthfulkindness.com/2015/06/23/impact-example-respond/

…

https://truthfulkindness.com/2015/06/07/self-identity-am-i-still-me/

…

https://truthfulkindness.com/2015/02/24/dementia-change-priority-pathways/

…

https://truthfulkindness.com/2015/02/02/harrys-lantern-dementia-trail/

…

https://truthfulkindness.com/2014/12/07/pwd-leadership-2014-in-my-own-life/

…

https://truthfulkindness.com/2014/11/07/hold-hand-anchor-me/

…

…
* 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 clinical diagnosis is Mild Cognitive Impairment. Each writer retains full copyright for material on this page; I carry copyright for my own remarks on 2015-09/01. Only 2hrs to put together this blog entry.

Healthline

August 2015 Pages by others with Dementia Symptoms

Posted on September 1, 2015 by Truthful Kindness

These are newest pages that I have posted from persons with dementia symptoms
who have shared their lived experience thru words or projects.
(I add the word “symptoms” because not everyone uses the same vocabulary;
my collections include pages from those with diagnosis of
Mild Cognitive Impairment as well as Alzheimers, Lewy Body, Vascular and other types of “dementia”)

I thank each of you for your generosity of letting the public into your private world !
My hope is that your perspectives can be applied to help and encourage
other patients, care-partners, and professionals.

Suggest Right-click the TEXT underneath the description, and select “open-in-new-tab”,
which allows you to return to your original page, by clicking tab at top of window.

…

… New page from Cecil Ristow with “Going Along – or Getting Out”

https://truthfulkindness.com/index-persons-with-dementia-pwd/cecil-ristow/aug-2015b/

—

…

New page from Dianne White with “Looking Normal” at:

https://truthfulkindness.com/index-persons-with-dementia-pwd/dianne-white/aug-2015/

—

…

… New page with descriptive photography from Gord Settle; “Preventing Loss of Focus”:

https://truthfulkindness.com/index-persons-with-dementia-pwd/gord-settle/aug-2015/

…

… New page from Harry Urban with five excerpts from his blog at :

https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/aug-2015a/

…

… New page with four more excerpts from Harry’s blog at :

https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/aug-2015b/

—

…

… New page from Myrna Norman with “Walk a Step in My Shoes” (written for Dementia Mentors):

https://truthfulkindness.com/index-persons-with-dementia-pwd/myrna-norman/aug-2015/

Healthline

Music is Connection despite Dementia Symptoms

Posted on August 25, 2015 by Truthful Kindness

Tru here. (Picture was made for me by daughter Charlene.)

During 2015 ADI conference in Perth, Simone Willig asked what music means to me.
My answer was;

“Music is Connection (despite dementia symptoms):
to myself, to others, …
and to the unseen rhythms connecting each living entity.”

Today’s blog is specifically geared for those who might be developing dementia symptoms.
Like my friend George Huba PhD suggested at http://hubaisms.com/2015/08/05/some-things-you-might-do-before-you-have-cognitivedecline-mindmap/ ,
this is the time to address some preliminaries, one of which is documentation of music preference.

Due to jumble of audio reception in my brain,
I am no longer able to enjoy many of the songs from youth and earlier adulthood.

Multiple instruments or fast beat usually feels too “busy” and chaotic,
even with the familiar songs that I enjoyed during earlier years.
If there is absolutely no other action or sound going on in the house then I can listen to one or two songs that are “busy”
but more than one or two songs is a problem.

Both for my communication with self and with others,
I think it important to document
not only style but
particular songs that are part of what it means to be ME … and why.

Maybe my list will give YOU some ideas of a list for yourself (or loved one).
You will certainly know ME much more intimately after you read the list.

Songs and Significance in my life

EARLY YEARS:

Dad’s love song for my mother was “Beautiful Brown Eyes” (Brothers Four). (see autobiography page of https://truthfulkindness.com/bnp/part-1/parents/)

Dad always worked at least two jobs while we were growing up, and one was always as a railroad “switchman”. He had a wonderful version of Wabash Canon Ball that he perfected on harmonica. We all sat on the floor around the fire while Dad’s harmonica imitated the sound of the engine starting, picking up speed, the song, then brakes, and release of air. It was an auditory experience. (Pic by my friend Andrew Garvey).

Julie was the other half of me. “Puff the Magic Dragon“ (Peter Paul & Mary) represents the idyllic magic of early childhood for Julie and I. Dad often played it on his harmonica for us. (see autobiography pages of https://truthfulkindness.com/bnp/part-1/julie-bindy/ and https://truthfulkindness.com/bnp/part-1/train-ride-magic/)

We children learned to waltz about as soon as we learned to walk, by our feet on Daddy’s feet as he danced (or sometimes suspended between Mommy and Daddy). We learned new waltz steps while Dad hummed the tune of “Blue Danube“. (see autobiography page of https://truthfulkindness.com/bnp/part-2/2a/remember-daddy/)

When I was 6th grade we began teaching ballroom dance as a family, and each had our favorite dance. My favorite dance was tango, and new steps were always learned with the tune of “Hernando’s Hideaway“ (Mantovani).(See https://truthfulkindness.com/bnp/part-2/2a/tango-with-daddy/)

“Malaguena“ (Larry Adler) has always been my personal favorite of the songs Dad played on his harmonica with the wild driving tempo in crescendo, then achingly tender diminuendo. It was originally the sixth movement of Lecuona’s Suite Andalucía, and Dad played it magnificently.

FAMILY HERITAGE:

“Grandma’s Feather Bed“ (John Denver) reminds me of holidays at my grandparent’s rural log cabin home, and four cousins sleeping head-to-toe (two at each end) in the single bed, with Grammy’s feather bed under us and comforters stacked over us … in between trips thru the snow to the outhouse.

“Wayward Wind“ (Frankie Lane) for my paternal grandmother, who spent summers at the lake in Minnesota (where my father was born and spent his early years at the Chippewa Reservation) and spent each winter near us in Oregon.

“The Chippewa Song“ was handed down from my father. One year I sang it to a music specialist at the Reservation who acknowledged the Chippewa language and culture in the song, but said “like many of the old songs, that song must be lost to history”. I only remember the first of many verses, and it was sung to my children at bedtime … just as my father sang it to me.

The Irish and cowboy heritage from maternal side of my family is memorialized with my maternal grandmother’s favorite song “Oh Danny Boy“, and “The Master’s Call” (by Marty Robbins) which became my son’s special bedtime song.

“Michelle“ (by The Beatles) was primary song for both my sister and my daughter, which I sang her at each bedtime during her childhood.

The first album I asked for was in 5th grade; “My Cup Runneth Over“ by Ed Ames. Mom had been saving up to buy a new couch (never had one before) and instead Dad came home with a stereo player. That is also the year our family was given gift of a used, black and white television, and we children were allowed to watch two shows per week. Ed Ames had the Native American role in the weekly show of Daniel Boone, and that is where I was exposed to his voice. I remember many a night going to bed, with Mom on Dad’s lap in the one chair, listening to records they had been given by friends. She finally forgave him for buying the stereo — but she never did get a new couch. Years later he bought a large grandfather clock instead of the couch, and we all sat on the carpeted floor until we inherited the chaise lounge from grandparents. (After all, difficult to dance on carpet so what is a carpet for if not sitting on — LOL ! )

My brother, sister and I regularly sang “They Call the Wind Maria“ (Harve Presnell) with Dad on harmonica.

Another family favorite was “Impossible Dream“, which was a favorite of my brother in his early youth.

During seventh grade I learned the songs from many musicals, and ever since 1970, “Who Will Buy this wonderful morning” became my default song. That song is what I hum every morning until something else enters my mind or until I hear something that day. I was about 40 years old before one of the children pointed out that fact. Never really realized until then.

Our small High School had one drama production per year with joint participation from choir, art department, and much of the community. My Senior year we produced the musical “Sugar” (based on the Marilyn Monroe movie “Some Like it Hot”). As “Sugar”, I had the female lead.

“Bridge Over Troubled Water” and “He aint Heavy he’s my Brother“ were my younger brother’s favorite two songs and captured much of who he was until he died from a shotgun blast to the head while protecting his friend. He was 21 years old. (see my autobiography pages https://truthfulkindness.com/bnp/part-2/2d/death-brother/) and (https://truthfulkindness.com/bnp/part-2/2d/october-justice/)

“Big Bad John“ (Jimmy Dean) was my song for the best friend I had thru many bad years; John Kimbley. He was the boy across the street whom I babysat during High School years, and was best friends with my brother. He was even more strongly integrated into our family after my brother was killed. Years later he returned from his military time, and I returned home from military base in Italy, in order to care for Dad while he was dying of cancer, so we both were living in the same houses, across the street, as adults. We shared coffee every morning and I had extremely vivid dream of John’s death at 25 years old. Several months later he died almost exactly as I had dreamed, and I had a really REALLY hard time with that one! (written autobiography page, but not online yet). It was as if I had suddenly lost Julie again, lost my brother Spence, and lost John … all at one time.

First two verses of “How Great Thou Art“ (as sung by my friend Feather ForestWalker and me) and “The Lord’s Prayer“ (Andrea Bocelli) are my favorite childhood hymns. “I Believe“ (Frankie Lane) is very important to me, along with “What a Wonderful World” (Louis Armstrong). “Avinu Malkeinu” (Barbra Streisand) is an addition during the last 10 years. Many of my spiritual beliefs have changed thru the years, but my relationship stays very strong. (See https://truthfulkindness.com/2014/07/16/faith-dementia/ and https://truthfulkindness.com/2014/10/31/my-motivation-hope/ )

Both “Forever and Ever“ (by Randy Travis) and “When I’m 64” (The Beatles) were songs for our wedding. (Yes LOL; a bit avant-garde.)

I sang “The Rose” to my new husband … during the wedding ceremony, to go with the vows we wrote. (Again, autobiography page not online yet).

…

My husband’s favorite phrase when asked “… but how did you know?” by me or one of the children, is “That’s My Job” (as sung by Conway Twitty)

“Blue Shadows on the Trail” (Sons of Pioneers) was my Divine warning of hard times coming (after more than 30yrs with no answers for my symptoms … Lyme disease diagnosis later that year & began five long years of nausea and side effects from various medical treatments for the several tick-borne diseases, culminating with tentative dementia diagnosis)

“You Gave me a Mountain“ (by Marty Robbins recorded by Frankie Lane) is for the many many strong challenges of my life. Also, of course the large impact Mount Adams and the little rural town of Trout Lake have played in my family history and in my own life.

The log cabin which my grandfather “helped” build (as a toddler) is the one PLACE on earth that is most deeply ingrained in my personhood … with Mt. Adams “in the backyard”. The location of belonging and Shalom (peaceful wholeness).

“You are so Beautiful” (Joe Cocker) is my Divine love song. Don’t ask me why … because I am not going to share that story.

And of course “The Taps” with which Dad always closed harmonica sessions before tapping his chromatic harmonica on his lap to clear it … and sending us to bed.

“Try to Remember” (Harry Belafonte) and “The Way We Were“ (Barbra Streisand) represent my efforts to retain moments and memories, despite dementia symptoms.

I am sure that I will add many more favorites to this playlist, but these songs represent most of who I was as a youngster, who I became as a young adult, and who I became as a mother. Some of these songs are saved in “Musical Memories” listing at my youtube channel https://www.youtube.com/playlist?list=PL2E2lPBsUeBiLgnJd9_diZPdHfDXdWKGy .

Other Blog Entries/Pages that talk about music on this webspace are:

i am from Truthful Loving Kindness at https://truthfulkindness.com/2014/07/12/intro-to-b-n-p/ ;

October Week-ends at https://truthfulkindness.com/bnp/part-2/2b/oct-weekends/ ;

Pain Fatigue and Creativity at https://truthfulkindness.com/about/life-other/med/pain-fatigue-creativity/ ;

Tinnitus and Auditory Hallucinations at https://truthfulkindness.com/2018/12/11/tinnitus/ ;

For Restaurant Staff at https://truthfulkindness.com/2017/07/18/dm-restaurant-staff/ ;

Perspective of Hope at https://truthfulkindness.com/2019/01/21/perspective-hope/ ;

Favorite Films and WHY at https://truthfulkindness.com/2017/01/17/favorite-films-why/ ;

Train Ride Magic at https://truthfulkindness.com/bnp/part-1/train-ride-magic/ ;

Be Still My Soul at https://truthfulkindness.com/about/life-other/spiritual/wake-up-songs-be-still-my-soul/ ;

Non Dimenticar at https://truthfulkindness.com/about/life-other/spiritual/non-dimenticar-near/ ;

Chippewa Song at https://truthfulkindness.com/about/life-other/family-history-index/chippewa-song/ ;

Tango with Daddy at https://truthfulkindness.com/bnp/part-2/2a/tango-with-daddy/ ;

Sugar Musical at https://truthfulkindness.com/bnp/part-2/2b/sugar/ ;

Again; “Music is Connection (despite dementia symptoms): to myself, to others, and to the unseen rhythms connecting each living entity.”

How about YOURS; where is your list ?? !!

—

LINKS

Vid at 2015 Perth (starting off with statements from my husband, then from myself) >>

for Index to My Favorite Things at https://truthfulkindness.com/about/about-me/favorites/ .

AlzSpeaks: Arts&Music w/DrJenn, Anne, Creeky, ElM at https://youtu.be/xS2u92wLkd0 . (maybe frm 2020Nov24)

.
* 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. Full legal name Truthful Loving Kindness copyright on 2015-08/25. 8 hours. Plus an hour 24Oct2020.

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Path thru Loss and Grief … to Choices and Dementia Advocacy

Posted on August 18, 2015 by Truthful Kindness

Tru here.

Looking at my wardrobe doors this morning reminds me.

Earlier this month I was standing in the bedroom wondering what clothes I have, and where they are located. Since wardrobe doors were closed and clothes were not visible at that moment, I was stuck. “Don’t worry about it; you are just over-tired.” Then it happened again yesterday — and I was not over-tired.

I remember the first time I was stuck on filling my cup of coffee. I was sick that day, and pictured mug full … but could not remember the first step for the process. I was stuck. That was the first time, and I rationalized that I was sick … and tired. But it happened again about a month later. And about a month after that it started happening every few weeks. Now it is every couple weeks and it is no longer so shocking. It is, however scary because I know the time will come when that will become my “new normal”.

The first dozen times when I realized I was unsafe to drive, I knew that I was over-tired. Made sense. Then the frequency increased and I realized I was not over-tired; it was just the way it goes. I gave up the keys until things changed for the better. When I got a tentative diagnosis I gave up my drivers license entirely.

The First time my cognitive abilities fail the task is usually when sick or extra tired … and it is shocking. But then it happens again … and then the frequency increases until it becomes my “new normal”.

This is my new pattern of loss:
Increasing frequency of loss.
Increasing intensity of loss.
Increasing experience of loss and grief (in order to bring) …
Increasing appreciation for the blessings of life.

This grief must be recognized and dealt with in healthy ways
in order to get past it
and CHOOSE to focus on the blessings of life.

Sometimes the first stage of this grief feels like fear or anger and I will get on my treadmill (which has extra-long support bars so that I do not need my walker) then after I have worked this energy off … once in a while … I cry. Sometimes I not only cry but I DESPERATELY cry, desperately pray, hug my big dog for long periods of time and go out with my pet chickens competing to sit on my lap. If these emotions hit late at night I will play my lap harp. If while I am in the car then I grab my stuffed animal off the dash and stroke it while the tears fall. It is okay to cry. In larger perspective I consider it renewing because …

Once I acknowledge and consciously experience the grief then, as they occur, I can use these events as reminders to find compensatory tools and strategies for self and others to live as well as possible with the time we have available.
… until the next round of grief comes due … then must experience it also, in order to get past it.

… I choose to focus on life’s blessings (and the blessing in opportunity of advocacy).
But in order to do that I must pass THRU and endure the grief.
Both are an important part of the complete process for keeping my life in a larger perspective.

. . . * 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. Full legal name Truthful Loving Kindness copyright on 2015-08/17. Spent 5hrs putting together this particular blog.

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Sound DisOrientation as Dementia Symptom

Posted on August 11, 2015 by Truthful Kindness

CRUMBLES ! !

There goes another useless alarm of some type.

Tru here on July 30. This morning is driving me crazy. Since I have lost my auditory sense of direction, I can hear the sound but cannot tell what direction sound is coming from. And my memory is impaired so cannot remember what sounds the different appliances emit. I suspect the piercing chirps this morning were from smoke alarm somewhere. When I hear the other sounds I don’t know whether to check the toaster, stove, the convection oven, the landline phone, my cell phone, or look around for what I have forgotten elsewhere. Once in a while I figure out what is making the sound, but probably half the time I give up before figure it out. It is all just so very frustrating; an exercise for futility and patience. For many years alarms were wonderful tools to meet needs … but this year? … I think I have progressed past their usefulness. grr-r-r-r !!

August 6: Have not had smell hallucinations for months but … they’re back !! and loud tinnitus buzzing in my ears. grr-r-r-r

Had problems this morning also: Standing in bedroom. I know I have clothes but what are they and where are they? (Wardrobe door is closed.) Received message from someone – but do I know this person? I know that I have a tool to help me with this, but is it a book? Is it an index card in a file somewhere? What and where is that tool? (contact file in computer). Reaching for an apple … in the drawer under the oven ??? LOL What a day !!!

* 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. Full legal name Truthful Loving Kindness copyright on 2015-07/30. Spent only 15 minutes putting together this particular blog.

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July Pages by others with Dementia Symptoms Part 2

Posted on August 4, 2015 by Truthful Kindness

Suggest Right-click the TEXT in between the arrows, and “open-in-new-tab”,
which allows you to return to your original page, by clicking tab at top of window.

…

… New page with Barry Pankhurst’s poem “At One with Spirituality” at:

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/barry-pankhurst/july-2015/ ;
—

…

… New page from Cecil Ristow with his project of “Getting Things Done”

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/cecil-ristow/july-2015/ ;

—

…

… New page from David Kramer on “Making the Diagnosis (Part 2)”

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/david-kramer/july-2015/;

…

My most recent favorites from Harry Urban at:

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/july-2015-b/ ;
—

…

… New page from Max McCormick “Creativity”:

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/max-mccormick/july-2015/ ;

…

… New page from Michael Ellenbogen with his speech at NAPA:

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/michael-ellenbogen/july-2015/ ;
—

…

… New page from Vicki Atkinson with short poem:

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/vicki-atkinson/july-2015/ ;

…
* 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. Full legal name Truthful Loving Kindness copyright on 2015-07/31.

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To Honor Richard Taylor PhD

Posted on July 28, 2015 by Truthful Kindness

Tru here. Have you ever noticed that all of my blogs now begin, “Tru here”?
There is a good reason for doing it that way, but I got the idea from Richard; at the time he was beginning all his blog entries with the phrase, “Richard here”. Actually I only spoke personally with him a few times on concerns for blogging and options involved in public speaking, but each of those times was full of impact.

Hope to put out a special “Perspectives” NewsLetter in his honor within next couple days, including more of his blog items, but here are a few of my absolute favorites:

“The Long Hello“, ( at http://www.richardtaylorphd.com/blog/entry/159-the-long-hello.html ) written 2012 May 16, begins:

“This is the message, the insight I leave to myself
and I share with you
for you to consider
and keep with you”

An excerpt from introduction of “What it’s Like“, written 2008 Aug 30, is:

Since the diagnosis my relationship with my spouse, my family, and my friends has broadened and in some ways deepened. We spend more time really being together as a family. We talk more, hug more, cry more, and laugh more. We now seem to do each of these activities more, harder, and longer.

We haven’t found THE right way or ways to live with and through this disease. We keep trying until we seem to get it approximately right, and then the disease morphs my symptoms in a new way, and we start all over again — trying to stay just one step behind the disease’s occasional bouts with loneliness, fear, and frustration.

( at http://www.richardtaylorphd.com/blog/entry/6-what-it-s-like-to-live-with-dementia.html )

And of course “I Had a Dream“, also written on 2008 Aug 30. Short enough to be included here in its entirety:

Well, last night I had the strangest dream. I dreamed the leaders of the Alzheimer’s Associations, Researchers, Congressional Leaders, and a host of other professionals all sat down and agreed to sit around the table until they came to some consensus on how to lead this Nation through the greatest public health crisis of the first half of the 21st century.

I knew it was a dream because also seated around the table were many, many people living with one or more of the various forms of dementia. Jointly they agreed to the following:

The first priority for investing limited public funds in the battle against dementia is: people with the disease, caregivers, families, research into their psycho social problems, funding caregiver support services,

Then research into finding a cure for the disease, research into finding ways to delay the progression of the disease –

Let’s ALL talk about this before we rush off in this direction or another! Please, please, please!

Richard (at http://www.richardtaylorphd.com/blog/entry/21-i-had-a-dream.html)

* * * * * * *

Richard’s thoughts and actions had a big impact on our community, and I suspect that impact will continue to grow from his thoughts documented in text and video. He left books (such as “Alzheimer’s from the Inside Out“), blogs and articles, videos, etc. His website is http://www.richardtaylorphd.com/ but blogs cannot be accessed from there. I found blog access thru “tags” at http://www.richardtaylorphd.com/blog/tags.html . There are a few videos at https://www.youtube.com/user/richardtaylorphd .

* * * * * * *

Pages to honor Richard:

Ken Clasper wrote at http://ken2clasper.blogspot.com/2015/07/rip-richard-taylor-phd.html. An excerpt is:

“He was a true hero to many as he had shown what could be done after the diagnosis, but he was also a genuinely friendly man, who was down to earth and very modest.”

Mick Carmody described Richard as,

“The GODFATHER of advocacy of human rights for us all”, …
“Each time I speak in public you will forever in my thoughts.”

(above excerpted from http://carmodym59.com/2015/07/26/richard-taylor/)

Michael Ellenbogen wrote about Richard, excerpted below:

“There is no single dementia advocate that has done as much for this cause then Richard. … He gave 10 Years of his for all of us. That is a very heavy price to pay when you know that is all you have left. … My dear friend I know that were ever you are now you will start a new mission to make it better for others. I will miss you so much but will continue to do what we must do. I will so miss our disagreements and laugh’s together.”

excerpts from https://truthfulkindness.com/index-persons-with-dementia-pwd/michael-ellenbogen/richard-taylor-phd/;

Harry Urban’s remarks begin with some of the things he learned from Richard:

Stay true to yourself …
don’t get caught in the headlights of fame.
Remember who you are and …
leave a mark for others living this disease.

excerpted from https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/richard-taylor-phd/;

David Kramer wrote about mentorship from Richard at https://truthfulkindness.com/index-persons-with-dementia-pwd/david-kramer/richard-taylor-phd/; small excerpt is:

“He led by example. …
He spoke with elegance,
he educated without teaching.
His stories were poignant and moving. …

He gave so much to so many.”

* * * * * * *

Richard is also honored by some friends of the dementia community:

ADI (Alzheimer’s Disease International) posted “In Memory of Richard” at http://www.alz.co.uk/news/in-memory-of-richard-taylor-phd.

Shibley Rahman PhD, author and friend of the dementia community wrote “Richard would say, “I want to think how I am to live with dementia, not to die from dementia.” (at http://livingwelldementia.org/2015/07/27/a-quick-word-about-richard-taylor-ph-d/)

Lori La Bey, founder of Alzheimers Speaks, calls Richard “… a trailer blazer in the world of dementia. Known around the world for his honest and pressing insights.” (excerpted from her page honoring him at https://alzheimersspeaks.wordpress.com/2015/07/26/dementia-icon-richard-taylor-will-be-missed-but-never-forgotten/)

Teepa Snow, Positive Approach to Brain Change advocate, said “Richard has indeed lived with purpose and helped others do the same. He was an early adopter of the massive culture change that must happen as more of us learn to live with the changes in brains that come with various forms of dementia. He used every gift he was given and grew some he never thought he had… He will be greatly missed and always admired, loved, and respected.”

Dr. Allen Power, Geriatrician and Eden Alternative mentor, wrote at http://changingaging.org/blog/hello-richard/. An excerpt from his article is below:

At one point, I asked him, “What is the main point you would like people to know about dementia at this time?” He responded by talking about recognizing the “human-ness” in people, and then made this remarkable statement:

“I believe that as people progress with dementia, their humanity increases.
People have to get ready for that humanity to be unleashed.”

* 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. Full legal name Truthful Loving Kindness copyright on 2015-07/28. Spent 14 hrs putting together this particular blog. Photo with permission from Kim McRae to use poster she and Richard designed.

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Person with Dementia Symptoms

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

FAMILY HERITAGE:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

“This is the message, the insight I leave to myself and I share with you for you to consider and keep with you”

Since the diagnosis my relationship with my spouse, my family, and my friends has broadened and in some ways deepened. We spend more time really being together as a family. We talk more, hug more, cry more, and laugh more. We now seem to do each of these activities more, harder, and longer.

I knew it was a dream because also seated around the table were many, many people living with one or more of the various forms of dementia. Jointly they agreed to the following:

The first priority for investing limited public funds in the battle against dementia is: people with the disease, caregivers, families, research into their psycho social problems, funding caregiver support services,

Then research into finding a cure for the disease, research into finding ways to delay the progression of the disease –

Let’s ALL talk about this before we rush off in this direction or another! Please, please, please!

Richard (at http://www.richardtaylorphd.com/blog/entry/21-i-had-a-dream.html)

Pages to honor Richard:

Please pass on Dementia Awareness by Sharing:

“This is the message, the insight I leave to myself
and I share with you
for you to consider
and keep with you”