Focus on Essential Priorities

Posted on February 24, 2015 by Truthful Kindness

Rather personal entry; A discussion of my own goals … while living with dementia symptoms. (PS: “Bindy” was my nickname as a child and young adult).

This willow tree saw the pattern of our lives on a dreamy day in May.

Bindy is sitting on the first quilt her mother made,
reading from her grandfather’s third-grade textbook.
Shelly and Spence are playing “house” under the boughs on the other side of the tree.

Shelly plays the “Nurse”. And Spence is the “Hero” who dies.

What a forecast of reality –
Spencer died as a 21-year-old “Hero”, and Michelle was in charge of the cardiac-respiratory unit.

Me? I sit in my wheelchair, wondering what G0d has in store for my life.

I’ve been busy surviving the chaos, but I know He still has a purpose for me,
and He wouldn’t request something I am not capable of.
… So now I wait …

(Nickname was “Bindy” before I legally changed my name to Truthful Loving Kindness)
2001-01/15

On learning he had terminal cancer, neurologist Oliver Sacks wrote, “I feel a sudden clear focus and perspective. There is no time for anything inessential. I must focus on myself, my work and my friends. … I shall no longer pay any attention to politics or arguments about global warming. This is not indifference but detachment — I still care deeply … but these are no longer my business; they belong to the future.” (Link to NY Times article at bottom of page.)

……….***……….***……….

Tru here.
After developing dementia symptoms over the previous 12 years, on learning my dementia was probably irreversible and progressive, I also re-evaluated my priorities. Like Oliver Sacks, I discovered a feeling of detachment for politics and other issues over which I had little control.

In September of 2006, I had investigated the Hebrew words “chesed v’ emet”. My word study showed that, according to my own personal vocabulary, these words meant “Truthful Loving-Kindness” or actions based on Loving-Kindness (chesed) with unwavering truthful reliability (emeth). I said to myself, “That is what I want my life to be about. As much as possible, I want that to be the description of me; the MEANING of my life. A year later, on my 50th birthday, I legally changed my name to “Truthful Loving Kindness”. This has been a consistent reminder of my life goal, and a guide for decision-making and priorities.

Six years later I received a tentative diagnosis of dementia. No change in my life meaning, but a huge change in possibilities of how I could best accomplish demonstrating Truthful Loving Kindness.

The minor issues fell away.
I mostly lost interest in anything that was not in my own sphere of influence.
Oliver Sacks put it well;
it is no longer my responsibility.

Not many people are compelled to collect and analyze data. I am.
I remember my first conscious analytical decision.
At four years old I decided I wanted to be a good “Mommy” when I grew up, so I decided to pay attention. I started analyzing the parenting techniques of my parents, my friend’s parents, and everyone else’s parents. I thought about what did not work, and remembered what did work. Later, other ten year old girls played Barbie. I collected historical data, separated that data according to desired categories, and created my elaborate card catalog of dates and events. As you can imagine the computer is my friend. I am an avid Searcher. I also pay very close attention to the credibility of which sources I use, when adding to my vast collections.
(Obviously I use Dewey Decimal System in order to keep track of my various pursuits – LOL!)

Now I collect and analyze data about myself and my dementia symptoms, writing about them weekly in this blog. I collect things written by other PWD (Persons With Dementia) and make various pieces of that collection available to others on a monthly basis thru the online collection of links called the “PWD Perspective” (link at bottom of page). Am collecting PWD Dementia Success Stories and hope to bring copies of that collection when I speak at the annual Alzheimer’s International conference at Australia in April 2015.

Don’t get me wrong; yes, I “suffer” from my dementia symptoms. (And please do not complain about me using that term; as a Person With Dementia I personally am the ONLY person who has the right to say whether I suffer from my dementia symptoms.)
If you follow my blog then you know I have hallucinations.
I have mornings when I wake and do not recognize the man beside me in bed.
I have months when I average three hours sleep per night, and those few hours filled with terrible vivid dreams that are more real than my daytime hours.
These are all somewhat “expected” factors of Lewy Body Dementia, so not surprising in the least.
My reading comprehension has dropped from University-level to fourth grade, so I can rarely find an enjoyable novel in which to escape, and it is progressively more difficult for me to analyze the data I wish to add to my collections.
(In fact, now I collect only dementia data, almost exclusively from other PWD and often do not understand that either.)
It is a rare movie or TV show that I can even tolerate, let alone enjoy.
I can no longer enjoy music with more than one or two types of musical instruments.
And rarely do I understand what is said on a phone call, because I cannot see the speaker’s mouth move, so it just becomes a mass of scrambled sounds that makes no sense.

In short, I am slowly seeing everything I value in life being taken from me,
in tortuously slow increments,
requiring constant acknowledgements to loss and grief
in order that I can fully enjoy whatever joyful moments await me in the future.

That is part of the cost,
but the benefit is that I have the privilege of describing what it feels like to experience those dementia symptoms.
This is not a well-trained “expert” describing what they SUSPECT it must feel like, but what these symptoms feel like in my own lived experience.
And as a fellow traveler on this path, I can also collect and share what other Persons With Dementia (PWD) have written about their own lived experience.

My ability to make a difference pre-diagnosis, and ability to make a difference post-diagnosis are very different.
In the very-big-picture of what differences I can make while living on earth, I would pick the much larger differences with my post-diagnosis life.
In the really big picture I can effect my main goal of demonstrating Truthful Loving Kindness much better post-diagnosis.

Maybe those changes will not occur during my lifetime,
but I will write as long as possible … and eventually the PWD voice will be recognized as very valuable asset for those who have relationship of any kind with a PWD.
And that is a big deal to me because …

Relationships make life worth living.

Links:

My Motivating Hopes at https://truthfulkindness.com/2014/10/31/my-motivation-hope/ ;

Oliver Sacks at http://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html ;

Dementia Success Stories at https://truthfulkindness.com/dementia-success-stories/ ;

* Admin issues: SHARE dementia awareness thru buttons below. If interested in receiving notice of future blog postings there is a “follow” button in the upper left corner (MS Explorer) or lower right (Safari and Chrome). 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. — Full legal name Truthful Loving Kindness copyright on 2015-02/24, with revisions in 2016, 2017, and 2021. Tags: alzheimers, dementia, goals, lived experience, purpose, sufferer, symptoms .

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Danger of Unusual Circumstance: Storm

Posted on February 9, 2015 by Truthful Kindness

Tru here. Written on my cell phone before 6am: There is no need for worry when we have a storm. We are very well-prepared. Living in the mile-wide stretch of coastline between ocean and Redwood Forest, we are also well-prepared for the attendant electrical outages. But it does not happen often enough for the procedures to become habit for me. That is a problem when there is inability to think things thru. Habit and schedule are my primary individual guidance at this stage of dementia.

This storm began Friday and we lost power Friday night. No big deal because we are well-prepared … and because husband did not work Saturday morning. Electricity came back on shortly after dawn allowed crews to check the lines and probably pull whatever trees off the wires. That was Saturday morning.

Now it is Monday morning. We lost power again shortly before bed time last night. No big deal. Problem is husband left for work this morning.

My big dog needed to go potty. She can no longer see well and is uncertain of her footing. I did not think of putting on a coat, or putting on the rain shoes which were waiting on the porch.

So I help her down the ramp in the dark. Then she stops at gate, so I go back out and show her gate is already open. … Then climb my wet, pajama-clad body back into bed to get warm. Finally remember she is still outside. She laid down (beside open gate). I run out into the rain, guide her thru gate and up ramp. Thought things thru enough to find large towel. Dried her (but forgot about my self). Brought her back into house and offered her a drink.

Now I have stopped shivering but realize mattress and sheets are wet because I was cold so I climbed back into bed — without thinking about changing from my wet clothes and drying me.

Really, I think I did pretty good with my limited thinking resources in the situation. It is just that I do not have habit and schedule to guide me when there is sudden change like power outage. Hopefully the rest of my morning will go more smoothly and I will succeed a little better on thinking things thru.

UPDATE: I had forgotten daughter moved in a few months ago, and she was upstairs getting ready for work (yes; like many other places of business in our town, her employer uses a generator). Hot coffee was on the gas stove, and everything was set for me by the time it was light. Now generator is on so I have computer access for a few hours. All is well. This is just a lesson in WHY people say “be careful” and “be safe” when unusual circumstances occur. It is not that our family was not well-prepared for storm and loss of electrical power; it is simply that habit and schedule are important safety elements in dementia patient’s ability to complete activities of daily living. In unusual circumstances habit and schedule are interrupted. Food for thought in a true natural disaster, especially when combined with our emergency services’ complete lack of understanding for most types of dementia, let alone special circumstances like hallucinations from Lewy Body Dementia & its’ penchant for disastrous reactions to medicinal sensitivities! If someone would like to suggest helpful application for professionals and loved ones, in order to minimize problems when habit and schedule are interrupted, you are welcome to leave those suggestions in comment section below. Again, always nice to “Share”!

* Admin issues: SHARE dementia awareness thru buttons below. If interested in receiving notice of future blog postings there is a “follow” button in the upper left corner (MS Explorer) or lower right (Safari and Chrome). 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. — Full legal name Truthful Loving Kindness copyright on 2015-02/02. (Photo of my husband and grandson in our backyard 2015-02/09)

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Harry’s Lantern on the Dementia Trail

Posted on February 2, 2015 by Truthful Kindness

Harry’s Lantern on the Dementia Road

Tru here. Harry was leading the way as a Dementia Mentor when I arrived on this road.

Harry Urban February 1, 2015 at 7:14am

I want to go home, where I belong. I seem to be drifting away into this world of nothingness. I don’t belong here and can’t understand why I am here. These are …the thoughts that go through your mind when you suffer from some form of dementia.

You seem to suddenly realize that your life is being forgotten. You look around and don’t recognize anybody or where you are. It doesn’t seem right and you just want to go home. The problem is, I don’t remember where home is.

I may be at the point of no return. I can’t retrace my steps to that other life I once lived and I certainly can’t hide. I scream, I want to go home, but no one can reach into my mind to help me. I am alone and wandering down this road that I believe is going to lead me to a better life.

Truthful Kindness February 2, 2015 at 12:15pm Tru here: Harry, You are the Point Man. As expressed in the comments made after you posted this, near behind you are other friends. This status update of yours reminds me of my Daddy leading the way thru the night: When Daddy and I were walking in the night, he held the lantern to his side rather than out in front of him. In essence, it spotlighted his feet. That allowed Him to see a bit of the trail ahead, and me to see bumps and thistles on the trail between the two of us. This Dementia Trail is a very bumpy trail with tangles of thistles!! As we go, we can sign-post some of the dangers for those following behind, and I think that is what we do with our writings. Coaches & on-lookers can observe and assist, but we on the Dementia Trail itself have a unique perspective. Someday there will be a cure, and we hope the trail will not last long enough to become a well-worn path. But in the meantime … Thank you, Harry, for continuing to shine the light on your path, in order for us to better see our own paths. … You are loved, Harry. You are very loved. (( hugs ))

Harry Urban February 9, 2015 at 6:14am: Have you ever had the feeling that you helped someone you never met? There is nothing like it. I wish it would be a mandatory feeling that everyone had to feel at least once in their life. To me it is a very emotional feeling that is hard to explain. I never cry but I shed tears when I am able to help someone that has no one else to turn to. I call it my work but it is a gift given to me by this horrible disease I have called Alzheimer’s. Alzheimer’s has taken me to the darkest of places and I had to learn how to crawl out or be stuck there for as long as I live. It is not a social commitment or a part time endiver, it is what I am suppose to do with my life. I take it very serious and get upset when someone considers it nothing more then a place to talk. Unless you walk the path, you have no idea.

* Admin issues: SHARE dementia awareness thru buttons below. If interested in receiving notice of future blog postings there is a “follow” button in the upper left corner (MS Explorer) or lower right (Safari and Chrome). 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. — Full legal name Truthful Loving Kindness copyright on 2015-02/02. (Photo of my husband and grandson in our backyard 2015-02/02)

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Hole in my Self-Control

Posted on January 26, 2015 by Truthful Kindness

The Hole in my Impulse-Filter of Self-Control

Tru here. Due to several factors in my life and history, I have always had an iron-strong stubbornness with my own self-discipline.

More than one of my supervisors have remarked their appreciation that once I said I would do something, they could forget about it, they could consider the task as well as done. Doctor said “when I said to cut your fat intake to as low as possible I didn’t really mean for you to cut your fat THAT low. Etc.

I could handle my own self-control but I might get very angry if you torture me by setting that luscious donut on my desk for three minutes.

Now I am discovering a big hole in that self-control.

I cannot eat wheat or will be sick more than a week. But I am no longer safe with bread in the kitchen.

It has not been surprising that I will decide to do something and then forget to follow thru. (Consider it a memory issue, not self-control.) But now …

Impulse to say something to my friends in Dementia Mentors video cafe. Realized I should not say it and stopped myself before it was out of my mouth. But then that night husband told me “You know, you should wait before you talk about that.” I said “But I didn’t; I thought about saying it but I didn’t actually talk about it at all. I didn’t even bring up the subject!” Husband said, “Sorry, but yes you DID say it”. Called my friend. She agreed that I had said it. huhmph!!! I am SURE I stopped myself, so I must have thought of it again later … and NOT stopped myself.

I am discovering the Ritz crackers are already in my mouth! How did they get there? I would never purposely eat gluten!

*** *** ***

Remember when Teepa Snow had us put our hands in front of forehead, then illustrated impulse filter? Well lately I am seeing that demonstrated in my own life; my impulse-control is getting a hole in it.

This is really devastating. My iron-strong stubbornness of self-control is a big part of my personhood. Can I still BE reliable Truthful Loving Kindness .. if I cannot even rely on myself? As far as talking, it comes back to what I said three months ago; the only secrets I know I can keep … are the ones I forget. So again; if you don’t want me to spill the beans … don’t put them in the pot !

* If you are Person With Dementia and have yet to share your Dementia Success Story, please leave comment to I can get you appropriate info. 😀 — Tru
* Admin issues: SHARE dementia awareness thru buttons below. If interested in receiving notice of future blog postings there is a “follow” button in the upper left corner (MS Explorer) or lower right (Safari and Chrome). 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. — Full legal name Truthful Loving Kindness copyright on 2015-01/26

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Dementia Success Stories

Posted on January 19, 2015 by Truthful Kindness

My newest project: DEMENTIA SUCCESS STORIES:
“How we made a difference for self and those around us AFTER diagnosis”

A dementia brain-storming project by participants of PWD Perspective newsletter

Tru here. UPDATE at page

https://truthfulkindness.com/dementia-success-stories/

This project had humble beginnings during a neurology appointment. “No one with dementia could possibly prepare such complete medical folder”, was what the learned specialist exclaimed after reviewing my comprehensive collection of medical reports, test results, and copies of lab work neatly categorized in two 3” binders. Wow. CAPABLE persons cannot possibly have dementia; thanks for the encouragement! In the year since that specialist appointment, I have met many capable Persons With Dementia. The true realization just needs to be announced. “Success” can be anything from garden or craft project, to academic or dementia awareness efforts. Here is the proof that Persons With Dementia (PWD) can be capable, positive, dynamic, uplifting, motivating REAL People! Survey consists of only 12 short questions. May or may not make your legal name available. Answers will be compiled by Truthful Loving Kindness. Purpose: 1. To make available Dementia Success Stories initially in hard copy & continuing online. 2. To increase awareness for capabilities in early stages of dementia, to benefit newly-diagnosed PWD, family, & professionals. 3. To broaden perspective of PWD, families, & professionals. 4. To increase dementia awareness. 5. To provide contact information for peer interaction. 6. To increase application of PWD lived experiences thru including blog addresses. 7. To distribute at big international ADI conference in Apr 2015. 8. To make available to Alzheimers/Dementia organizations. 9. To make available to medical professionals and other professionals dealing with dementia issues. 10. To make available for PWD. 11. Donation-only; NO for-profit sales !! 12. Consequently hard copy distribution will be somewhat dependent on donations, because my wallet is not large enough to cover huge amount of printing and postage. Thank you to each and every one for sharing your story. If YOU have not yet submitted info, but would like to share your story please contact me. — Tru * Admin issues: SHARE dementia awareness thru buttons below. If interested in receiving notice of future blog postings there is a “follow” button in the upper left corner (MS Explorer) or lower right (Safari and Chrome). 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. — Full legal name Truthful Loving Kindness copyright on 2015-01/19

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Smell Hallucinations and Dementia

Posted on January 19, 2015 by Truthful Kindness

Tru here. These smell hallucinations (phantosmia or olfactory hallucinations) are driving me crazy!! Several times an hour I smell “hot” electrical wires -like a “short” in the system or an old iron with frayed cord. Been smelling this in living room, bedroom, car, etc. … Everywhere I go!

Smell hallucinations started a couple years ago with random smells like new-mown grass in the bedroom, with windows closed, in the middle of winter.

This particular “hot” smell started this Fall, and right now it is several times in an hour almost every hour! I rarely talk about it because I have discovered that there is usually no basis for the smell. But boy is it distracting! Uuuuhhhhhh!!!

Mentioned to my young-onset friends. Six out of the seven responders said they had experienced problems with “hot” or “burning” smell, either in past or currently. Since they experienced this, two of these PWD (Persons With Dementia) have almost completely lost all smell sensations. Seems like there should be some research on the commonality of this particular smell phenomenon, but I have never heard of any. One patient suggested her smell hallucinations seemed to be temporarily assuaged by sniffing freshly ground coffee beans.

Like many other dementia symptoms, I think smell hallucinations can be a tremendous distraction to thought; whether productive conversation or other types of thought. Another aspect of concern is safety. When I smell “burning” several times per day, I automatically discount my sensory credibility. If something was truly burning, I would not know it unless I noticed smoke, heat, or fire. So husband is extra-careful to make sure batteries are current in smoke alarms.

Additionally; when an alarm goes off, I often have no idea where sound is coming from because I cannot remember what sounds the different appliances or gadgets create. I check my phone, husband’s iPad, oven, microwave, etc, and then I just try to stop the noise by putting in ear plugs.

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Time Priority Adjustment and Bathtub Issues Since Dementia Symptoms

Posted on January 11, 2015 by Truthful Kindness

Tru here. Before tentative diagnosis 2.5 years ago I had a longer “productive” life expectancy, in order to do all the things I wanted to get done. Now that expectancy of “productive” time has been compressed along with additional, dementia-oriented set of goals such as mentoring and advocacy that are now very important to me, so attempting to achieve much much more — in shorter realistic time frame.

At the same time, it takes longer to do even the little things like getting dressed or pouring cup of coffee. Increase of tremors plays a part, along with much longer thought process, constant distractions, (especially increase in sound distraction, even from husband and daughter speaking quietly on the other side of room, or grandchildren happily playing) and much much longer recovery period in order to get back to where I was in my project. Often, recovery is delayed by hours. It becomes easy to panic because these projects are important to me.

Constant frustration of goals requires my strong stubborn streak, in ability to exercise self-control and refuse temptation for anger backlash toward my loved ones. I have to constantly remind myself that this is about relationship with my loved ones, which has higher priority than any project. I know that self-control will be progressively reduced, as further effects from loss of filtering process. But I will stubbornly retain as much control over my own attitudes and actions for as long as possible.

One of the end results is sacrifice of my hour-long daily bath (except on Sunday — & I am writing this Sunday morning). I am just too busy to take daily time for this as an indulgence. In the old days bathtime was my time of highest creativity, whether with pen and paper or with art supplies. My ever-creative, romantic husband set me up with secure tub platform, glass of beverage, and project case to hold supplies. (I am writing from tub at this moment.) Now I mostly use computer tho. Saves time transposing. Saves time filing paper (which seem to never actually get filed so then efforts are lost). And, like I say, I am running out of time, so time is very high priority.

… But these tub moments sure are nice; decadently indulgent. 😀 — Tru

PS: Compensatory tools I use during bath time:

1) I have developed extreme dislike for sound of water falling into tub from faucet, so I use a hose to fill tub, thus avoiding that strong splashing sound.

2) I absolutely hate feeling of randomness from water hitting my skin in shower (it feels like an attack) yet adore immersing my body in the warm water of a tub.

3) I seem to never anticipate all my supply needs such as shampoo, towels, etc, so repeated trips to gather supplies extends time needed for bath. I need check-off sheet for supplies.

4) Once I get my hair wet, I also forget at what stage of shampoo I am; have I put on conditioner … did I rinse? I have gotten out of tub then realized there is no hair in tub or residue of suds; I never even put on the shampoo … I only got my hair wet! It is a problem because cannot use check-off sheet for that. Need to remove all papers once I start washing hair — otherwise they get all wet. Have considered some type of soap-crayons to write on tub.

5) Another problem is that I have an eczema-type scalp condition that requires topical treatment. My hair is now dramatically breaking off near roots, so assume I fried it too many times by neglecting to set timer for scalp medicine before rinse.

So goes life; new advance of problems brings need for new compensatory tools and techniques for work-around, in order to achieve maximum desired goals in minimum time. — same as everyone else!! 😀 — Tru (Signing off for real this time).

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Monthly PWD Perspective Newsletter

Posted on January 5, 2015 by Truthful Kindness

“See life Thru the Looking Glass of fellow PWD (Persons With Dementia) Life Perceptions.”

https://paper.li/f-1408973778?edition_id=2b314b10-949b-11e4-9a08-0cc47a0d15fd

Tru here. “Best of 2014” PWD online Newsletter was published Jan 4, 2015. It held 55 PWD participants (Persons With Dementia) who contributed links for written, pictorial or video material. Index to newsletter is available at top of newsletter page. This “Best of 2014” issue included 79 written pieces, 30 video links, and about 10 separate pictures. Many resources in one location. New newsletter issues will now be available monthly, with subscription option in upper right corner of newsletter page. I would like the lived experiences shared in PWD Perspective to be applied by both PWD and non-PWD. Application of these experiences can enrich the relationships of all concerned. * Admin issues: SHARE dementia awareness thru buttons below. If interested in receiving notice of future blog postings there is a “follow” button in the upper left corner (MS Explorer) or lower right (Safari and Chrome). 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. — Full legal name Truthful Loving Kindness copyright on 2015-01/05

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Recent Disconnect from Understanding Source of Dissatisfaction

Posted on December 28, 2014 by Truthful Kindness

Tru here. Been sick this week so simply posting my FaceBook status update as blog:

Feeling a bit better so back at keyboard for few minutes anyway. Want to document this feeling because seems like “lived experience” (thanks Shibley Rahman for term) should be useful to others.

Lately been dissatisfied and grumpy at times throughout day.
Just vague feeling of irritability.
Today remembered that I have been feeling this way a lot recently.
Finally (10min – hour?) it hit me that I wanted a drink.
It is not automatic anymore.

Dissatisfaction does not connect with source of dissatisfaction – just too vague.

Then I decided wanted drink of coffee. No never caffeine but I like my chocolate coffee and didn’t have any this morning because of the extreme dizziness. So I find coffee mug. I know there is decaf in my teeny motel-sized coffee pot, (which I can now do myself with motel-sized pre-measured packets).

I picture mug full … but can’t remember how I get it that way.
What do I do first?
Now I remember that this is how it has been lately; not remembering how to get it that way.
uuuhhh!!! Constant change

… as soon as you get your feet under you for a day or two, you end up on the floor again
and trying to figure out new compensation strategies. –Tru

UPDATE: Now i keep a mug on table (and an additional mug on my workDesk) at all times.
Seeing the mug triggers transfer from feeling of dissatisfaction to feeling of thirst ((big smile)).

* Admin issues: SHARE dementia awareness thru buttons below. If interested in receiving notice of future blog postings there is a “follow” button in the upper left corner (MS Explorer) or lower right (Safari and Chrome). 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. — Full legal name Truthful Loving Kindness copyright on 2014-12/24. // <![CDATA[ (function () { document.write(“”);} () ) // ]]>

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PWD Experience as Resource for Dementia Professionals

Posted on December 21, 2014 by Truthful Kindness

Tru here. 2014 was the year I realized that, in an ideal world, the collective lived experience of Persons With Dementia (PWD) would be a rich resource for dementia professionals (or any person) dealing with PWD. 2014 is the year I began hallucinations, and then began Aricept prescription. Aricept much improved my hallucinations, recognition of husband, and reading comprehension for over six months. After this increase my reading levels continued to drop and I have not increased my Aricept dosage. By the end of 2014 my reading comprehension dropped back down to sixth grade, and then further dropped to fourth-grade level. Awkward situation now, but I can write better than I can read, so I lost much ability to edit what I write.

During 2013, I spent many hours looking for PWD blogs. I found a few, but most were inactive. Left some messages but no one ever responded.

During Springtime 2014 I started realizing what a rich resource this information is. For fellow patient, caregiver, or professional, narratives from “lived experiences” of collective PWD should better prepare anyone interacting with individual PWD. Astute caregivers and medical professionals will recognize benefits from descriptions of Lewy Body hallucinations, vividly dramatic dreams, pinball-effect of sound and light, characters and creatures produced from coloring and texture of coverings for walls floors and windows, and other daily events. Wise persons can APPLY these “lived experiences” in their daily interactions with persons who are no longer able to easily communicate.

Frustration: I became part of several groups for mixture of patient and “caregiver”, but they held comparatively few patients. I learned why. Often mixed groups appear to be a safe venue for venting “caregiver” frustration, but little APPLICATION of lived experiences from other patients takes place. The dementia patient experiences little peer support, and is not really able to impact care of other patients, multiplying their frustration. I dropped my membership in those groups.

Frustration: Stigma-induced attitudes and terminology triggered my comments at newspapers, magazines and webpages, but were often never approved, adding to my frustration. However, it is a good thing I did this reading and commenting while I could, since my reading comprehension further dropped during 2014, largely preventing my understanding of most news articles now. To top it all off, it felt like I was the only person on earth (PWD or non) who was interested.

Frustration: The PWD text group did not want to hear about my advocate efforts. Not only were they not interested, but they were offended by “self-promotion” if people linked a personal blog or current project.

I was part of an organized video “support group”, but they were not interested either. During weekly update round-robin for that support group, it was clear that even two sentences of my current advocate efforts were two sentences more than enough. I can’t complain. It is just that no one else was truly interested; it was not important to them. I don’t want people to pretend interest just to be nice! Since I couldn’t really talk about my current activities I re-directed my efforts to projects.

PROJECTS:

1. Blog: Began my blog http://www.truthfulkindness.com on July 12. I paid for a year’s use of blog webspace at that address. This blog has a rather specialized interest audience. It has been over ten years since I became disabled so I had no friendship base from which to pull readers. Consequently blog readership is still comparatively low with ~240 viewers per week. However, my personal perspective is that who knows what wise decisions will come from those particular readers, in part from factor of what they read in my blog? The number of readers is not crucial, but those decisions and alteration of attitude may be. I feel very good about productivity from my blog.

2. Newsletter: ((link below))

https://paper.li/f-1408973778

It wasn’t until summer that I began gathering blogs of other PWD into weekly newsletter titled “PWD Perspective”. I paid the fee for one year in order to enable ability to work in draft format and web-publish in an ad-free environment. The first few months were very encouraging, with readership between 50 to 80 per week. But I could not continue that huge investment of time and effort. As long as I sent individual Twitter links for newsletter to each recipient who showed interest, each week, I continued to get responses of how helpful the blogs were, etc. But they did not subscribe, so when I quit sending individual links for each newsletter, readership dropped to 10% of that number! Considering the hours in prep-time each week, why continue herculean efforts shouting to only wind and trees? Modification was clearly needed. Different preparation techniques are now planned for 2015 requiring much fewer hours, and frequency will be monthly instead of weekly.

3. FaceBook: Since so many of my friends are active on Facebook, but do not blog, I also began gathering FaceBook updates for my friends into “PWD Perspective”, but FaceBook recently deleted that account. FaceBook offered to transfer information into either “page” or “group” status, but neither of those formats worked for this purpose. FaceBook project seemed to have a nice response during the months that it was operational, so this was quite a disappointment.

4. Public Speaking: Submitted abstract for oral presentation at 2015 ADI Perth conference. We will see what happens with that project, but the possibility is exciting.

5. Memoirs: Still have not given up on the idea of someday publishing my memoirs, but have not worked on them much this year. I have not had time, with my advocate efforts as priority.

6. Personal: Now have craft room available, but no time to devote to my craft projects … yet.

So you see I have stayed very busy with advocate issues in 2014. Some projects are small but clearly productive, and some appear not-so-productive right now. But one day soon, astute “caregivers” and medical professionals will recognize rich resource from descriptions of PWD lived experiences. They will apply lived experiences of other patients to their own current PWD relationships, and those relationships will blossom as a result. Since relationships are what makes life worth living, THAT is a very big deal to me! — Tru

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