Live for Today

Susan Speech Aug2014LoLink to Susan Suchan’s speech at 2014 Tulsa, Oklahoma Alzheimer’s Walk: https://www.youtube.com/watch?v=CQSXM5JHBlU .  Transcript below:
It is wonderful to see you all here today, thank you.  I want to tell you a little bit about my personal story.

About eight years ago I lost my sense of smell.  I nearly burned my house down because I forgot there was something on stove and I could no smell fire.  This was an issue so I went to my doctor and he ran me thru a gamut of tests, hoping actually for a synovial tumor.  There was no tumor.  Who wishes for a tumor, right?  But there was no tumor which led me to a neurologist where I was told (after more testing) I had early onset Alzheimer’s.  He told me to go home and live my life.  There was nothing they could do.

…  And that is what I did.  I spoke of it to very few.  I followed directions very well; I just lived life.

About two years ago I started having trouble with being lost in familiar places, and behavior that was very unlike myself.  People around me thought I was going thru a mid-life crisis or menopause.  I had no notion other than my life felt very different and chaotic.

When things became more physical I chose to go back to my doctor thinking hormones, cholesterol meds, …  “What can we do?”  “Where is the magic pill to fix these changes happening me?”  After trial and error I ended up back at the neurologist who sent me to a neuropsychologist for a battery of tests.  Very interesting but very very exhausting tests that gave diagnosis FTD (or frontal-temporal dementia).

I was told to go home and get my affairs in order — there is no cure.  Being pro-active and independent, that is exactly what I did.  Zip-zap, I had it all done, and then it dawned on me …  What next; wait to die?  No!  There is diagnosis (and there ultimately is death) but there is LIFE in between diagnosis and death!

I challenge all of you to LIVE life!  Grab it!  Don’t let go of it because nobody knows what tomorrow brings.

I am 56 years young and I am living well with dementia.  That’s because I have …  Look at these people here today; that is just a small picture of what keeps me going.  Thank you.  Thank you so much.

I would like to say, for those of you who have a loved one, or who are newly diagnosed, things that have worked for me (try it!):

  • Routine … routine … routine!  Whatever that be for you, don’t stop your routine.
  • Stay physical; take a walk.  Swim.
  • Stay social.  There are people out there who care.  And things may change; just tweak it for you.  Alzheimer’s has a wonderful website for caregivers and patients alike.  There is also a wonderful new website, Dementia Mentors, where you can Zoom and talk one-on-one with people who are experiencing the same path as you are going on.

These are resources.  Don’t sit down.  Don’t sit down and stop living.

I would like, in closing, to thank each and every one of you for coming here today and participating/donating.  Whether it is for someone you have loved, someone you care for, or just finding an end to this insidious disease and all dementias.

I am going to continue to use MY voice for all of us.  I will no sit down chair and be over.

Live on everybody.  Peace!

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Video Driving with Dementia

616 DM driv201408 6in300dpi Lo Tru here.  My Dementia Mentors video regarding Driving with Dementia was posted at dementiamentors.com/videos section on Sunday August 24, 2014.  Some people have difficulty viewing Vimeo sources, so it is also posted at https://www.youtube.com/watch?v=IlXo8cvBpEc .   (I still have not learned this application very well so if that link does not work then go to “truthfulkindness” channel on youtube.)  Transcript of video is below: I am not going to suggest someone else is wrong in their course of action.  I am just going to tell you why I PERSONALLY quit driving. Driving represents the independence of an adult; it is always a big deal. But dementia is the permanent loss of multiple intellectual functions.  This influences my driving in that I have difficulty remembering where I am going, and how to get there.  The memory problems may cause further distraction to what is already possibly a longer reaction time due to confusion “fog”. The two biggest factors in my decision were: 1) Financial consequences if an accident occurs (regardless of cause):  I understand many jury members believe that it is gross negligence for a person with dementia to drive an automobile.  With dementia diagnosis, my family could well be sued and held financially responsible.  Thus consequences of potential legal liability must be a serious factor in decision of when to quit driving.

As Charles Warner, a retired lawyer wrote at http://www.alzheimersblog.org/2014/04/30/driving-dementia/; “Fault”, … depends on a number of factors.  One of the steps often taken in auto accident litigation is to obtain medical records of the injured party.  If there was any reason to believe any person involved in the accident was impaired in any way (such as with dementia) the medical records of that party may be obtained by legal processes.  If you have been driving with a diagnosis of any type of dementia, you run a significant risk that fault for the accident may be assessed, in full or in part, against you.  If you are driving and have not advised your insurance carrier of your dementia, there is reason to believe that they may not extend coverage to you under your own policy.

2)  Emotional consequences if an accident occurs (regardless of cause):  If I was in an accident and a person (especially a child) was hurt, could I ever forgive myself for the “what if”?  What IF my reaction time was an element?  What IF I was distracted by confusion? Even independence is not worth that “what if” for the rest of my life.  So I did not renew my driver’s license.

Friend Robert Bowles also wrote about his driving decisions at http://lbdlivingbeyonddiagnosis.com/2/post/2015/08/driving-a-vehicle-involves-more-than-memory.html

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Online Dementia Communities

PrplAngel Experts
Tru here.

AVAILABILITY of online dementia Communities:

Dementia Alliance International (DAI) sponsors several online video “support” groups, each with no more than ten members.  My group gathers on Mondays.  DAI also sponsors video group “Café Le Brain” online Memory Café, which I attended today (Tuesday).

Dementia Mentors (DM) has the video group Memory Café Wednesdays,

Forget-Me-Not has one Thursdays, and

Dementia Mentors (DM) has other Memory Café groups on Fridays and Mondays.

If I desire, each one of those organizations also has a text-based group that is available 24/7, in which many of us participate regularly.  All the video groups and two of the three text groups are made up of primarily Persons With Dementia in the early stages.

Many Persons With Dementia have Early-Stage groups with whom they can meet physically.  Considering that I chose to quit driving that would be a problem for me.  Also, I live 2.5 hours drive from the nearest group, which makes the option rather impractical and expensive in time, gas, and fatigue.  These online groups are free if I have a webcam (which are available as low as $10 from Amazon).

In addition to their weekly Memory Café groups, Dementia Mentors (DM) has weekly short and empowering videos (I personally have made two of them) instructing how to rule your disease, and offers one-on-one mentoring for newly diagnosed through video chat. These videos are also excellent for persons other than patient to understand the dementia patient’s perspective.

Dementia Alliance International (DAI) has monthly “A Meeting of the Mind” webinars on topics of interest to people with dementia (and we also say “and others facing the challenges of dementia in their own way” to be inclusive to caregivers and professionals). The next webinar will be September 23 and the topic is: Dispelling the Myths of Dementia. The panel will all be people with dementia.

During September, World Dementia Awareness Month, DAI will be holding weekly “Master Classes” as part of our new DAI University initiative.  These classes will be for people with dementia, and taught by people with dementia.  The classes are as follows:
Sept 3: I’ve just been diagnosed. What’s next?
Sept 10: My conversation with my doctor
Sept 17: Advocacy and speaking out
Sept 24: My conversation with my family

BENEFITS of online dementia Communities:  DAI text group has 76 members, not all of whom are active.  Virtual Memory Café thru Dementia Mentors has 39 members but there are seldom more than a dozen or so in the video meetings, and Forget-Me-Not (with many care-partners) has 1700, but again only about a dozen in video meetings.  Consequently, despite my dementia, I have a wide-based peer group with which to interact.  Because of this I feel much more “normal” than I have in past years, lowering my stress level and thus also lowering my care-partner’s.  Additionally, the pool of knowledge available in these groups is quite substantial, with several types of dementia and a wide variety of occupations represented.  We discuss symptoms and work-arounds easily and consistently.  The opportunities for mentoring and discussing advocacy issues is tremendous and energizing.  All in all, these groups have made a big difference in my life, and that difference is beneficial.

I encourage patient contact to Dementia Alliance International which can be found at [[www.dementiaallianceinternational.org]] and Dementia Mentors is at [[ https://www.dementiamentors.org/ ]].
Patients as well as care-partners are welcome at FaceBook groups Forget Me Not at [[www.facebook.com/pages/Dementia-Support-Forget-Me-Not/1487407131472045]] and Dementia Aware at [[www.facebook.com/groups/250325295027020/]] are available, along with several groups for specific types of dementia.  There is also a written forum available at [[www.alzconnected.org]].  Links for PWD blogs are at top of page, in pull-down menu under “About and Links” title

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Gillian thought PWD not valuable

Tru here. Edmonton Journal Link to article of August 20, 2014: Dead at noon: B.C. woman ends her life rather than suffer indignity of dementia (with video).

I have heard talk that in many countries suicide will be EXPECTED for those with disabilities (especially dementia) in the future, exactly because of the reasons Gillian discusses in the website she prepared; to spare the “meaningless care of a mindless body” and “wasteful expense” to a society that is financially responsible for her maintenance.  Thus her statements are disturbing to me as the reflection of a possible step in that direction.  Public expectation can be deadly.

It also seems obvious that to this woman we as fellow Persons With Dementia have no remaining value either.

In the news article it says she did not want to be a “carcass,” physically alive but “with no one inside.”  On my grandmother’s deathbed, she didn’t recognize me but she knew that whomever I was, I loved her.  She could no longer speak but her eyes reflected my love as she looked at me and squeezed my hand.  She was surrounded by those who loved her and she knew it.  Even in those last days she was VERY valuable!  I am sad that Gillian did not recognize herself as valuable.

Some valuable comments are attached so check them out.
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PWD Communication in Early stages

Tru here.  Please remember, each person’s experience with dementia can be widely different.  Not only are there many different kinds of dementia (with Alzheimer’s in the lead), but some doctors say that most people with dementia have a mixture of several types of dementia, each in different amounts.  Additionally, individual personality, motivations and life experiences create unique dementia characteristics in each individual.  So I can only give you hints for communicating with me as an early dementia patient.

VERBAL conversation with me as PWD (Person With Dementia) in beginning stages:  Must preface with fact that like many PWD I have a gigantic problem with understanding audio-only speaker (like radio or telephone).

a) My personal verbal short-term memory is severely impaired so don’t expect me to remember ANYTHING that you tell me (even for five minutes)!
b) Use shorter sentences than usual; with less extra phrases I am more likely to remember the subject, object, and verb in order to connect the sentence.  I am NOT stupid; I understand each word individually, but have difficulty connecting them as concepts.
c) Minimize descriptive monologues or conditional clauses.  (I may get the “if” part, but by the time you get to the “then” part I have lost the “if” entirely.)
d) Please wait short pause after each sentence for me to “compute” your words, then you can resume speaking for the next sentence.  The time necessary between sentences may change from day to day or even moment-to-moment (especially true with Lewy Body Dementia).
e) As an introvert (INTP analyst), try to give me a bit of silence in order to compose a response, because I cannot listen, or think, or speak at the same time.  Every function takes more time than it used to — especially thought functions.  I have list of possible responses beside phone because otherwise cannot think of words; “He is not in the house … I will ask him to call … take us off the call list”.
f) Show patience with my difficulty in getting words out; much brain energy is consumed in trying to find any vocabulary to match the foggy concepts floating around in this brain, so each word is a small success.  Nouns are especially difficult.  Do not be surprised at my “work-arounds” of giving you a description instead of the noun belonging to it.  In fact, you may congratulate me on my creativity in finding a way to communicate the concept despite blockages.
g) Really I am not purposely developing dementia in order to grow your “patience quotient” — it is just a side-benefit for all concerned.  ((big smile)) …  And the coup-de-gras; please allow me to interrupt if I raise my hand, because otherwise the thought will be forever lost.

WRITTEN communication with me as PWD (Person With Dementia) in beginning stages:

a) Much of the above information is applicable to written information as well as verbal.
b) My personal short-term visual memory is much much better than my verbal memory, so if I ask you the same question multiple times write the answer where it is easily and continually seen.
c) Info-graphics (conveying information with pictures or other graphics) are extremely helpful in my understanding of a concept.  (I suspect comic-magazine type material will be next on my reading list.)
d) My reading comprehension is greatly helped by hearing the words at the same time as I am reading them.  So I currently read my favorite books into voice recorder, to stretch my enjoyment time as long as possible.  I think this is also related to why many of us as PWD enjoy video chat even tho we have great difficulty with telephone conversations.
e) Lists are fine but when reading lists I often forget the premise or what list is about, so short lists are much better.
f) Cut written work into bite-sized thoughts — like you would for a child.
g) Double-space between sentences and Double-lines between paragraphs (instead of just indented).  It is much easier to follow a sentence if it is not just a large crossword puzzle covering the page.

If I ask you the same question multiple times there is a good chance that for some reason the answer did not “register”.  This may be because your answer did not address whatever concern caused the question, so look for something that maybe you did NOT answer earlier.  An example might be if the question is a matter of calendaring then maybe my concern is another event I think may conflict with this, and it might be helpful to visually compare the events on calendar.

If I asked a question and your answer was “I don’t know”, then I can almost guarantee I will not remember your answer so I suggest you just write it down now, BEFORE I ask you five times.  LOL to my husband!  How could you (the awesome answer man) NOT know the answer??  Of course that does not compute!!

Much thanks to husband; after I finished this article I was unable to understand what I had written so he did editing for me.

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New Poster for Dementia Mentors

Tru here.
I created this poster in memory of my two grandmothers who travelled this path before me;

Thank you, Leota Pearl Spencer (1892-1979), and
Thank you, Erma Leola Kilroy (1917-2006),
… for lighting the path ahead of me, eliminating my fear.

Thank you, Dementia Mentors for giving me the wonderful opportunity of passing on this illumination.  https://www.dementiamentors.org/
; “We Help You Rule Your Dementia”

Text of poster:

“Since I learned from those who sent before me and led the way,
I do not dread what is to come.
This is not a NEW path, even though it is unfamiliar to me.
Like those before me, I will travel this path with honor and integrity,
lighting the path for those who follow
— until a cure is found.”  — TLK  (me)

UPDATE:  Thinking about this more, I very much appreciate how both my great grandmother then my grandmother handled their dementia symptoms. Their actions AFTER dementia are almost appreciated MORE than prior, because it so excellently showed their fortitude, creativity, love (despite confusion over not getting what they wanted, & even when not remembering WHO they were speaking with) and the growth of their unseen, spiritual relationships.

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I was going to write

Tru here.

… but my mind is now blank.

.
When I sat down I had a subject in mind and I was thinking how helpful it might be to others
… but now that subject and potential content has disappeared.
Wisps of thought … gone.

That is how today has gone so it has been rather discouraging.
Wisps of thought … gone.

Every task I try to do today is repeatedly interrupted by forgetting why I am here and what I was trying to do.

At my own suggestion we are removing my name from credit cards and bank accounts.

I am glad that I don’t need to have any more mammograms or colonoscopies or anything like that,
but at the same time I am rather emotional that they are no longer needed.

I have no interest in watching another program or movie,
with characters I don’t remember
and plotlines that are confusing.
There are plenty of other things that I would like to do, so I am not bored, just frustrated.

((Sigh))

In our conversation I told my husband that
all I understood were the first phrase of the paragraph and the last phrase of the paragraph,
so all the sentences in the middle might just as well have been “blah blah blah.”
He took me in his arms and his reply was,
“Okay, are you listening?”

“I love you blah blah blah … forever.”

Then the waiting tears fell. It is okay to cry.  Now I can pick myself up and move on.

**
I have decided not to wait until what I write makes sense;
I cannot edit it so I am going to post it the way it is.
Maybe it will make sense on another day and I can come back to edit.
— 2014-08/11

See “New Normal” >> https://truthfulkindness.com/2014/07/26/my-new-normal/

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Tags: communication, dementia, discouragement, frustration, forgetfulness, marriage, relationship, writing

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Book “Deeper Into the Soul”

Tru here.

Blog REVISION of 2016 Dec 15:  Four years ago, on Dec 15, 2012 finished reading (after many stops and starts because reading is progressively becoming more dificult for me) book about dementia titled “Deeper into the Soul” by Nader Shabahangi, PhD, and Bogna Szymkiewicz, PhD. …  It was an EXCELLENT suprise; a distinct challenge to the current de-humanizing paradigm.  One thing which facilitated my reading was the many illustrations included in the book.  My first time reading the book, I merely read the graphics, giving me an idea of where the book was headed, and giving me a bit of a foundation for somewhere to put my thoughts, as I began reading the text.  This has become my “go to” book, when folks ask me for my favorite book about dementia.

Nader received his doctorate researching basic philosophical assumptions underlying present-day psychotherapies.  He has worked extensively with elders, and dislikes the term “dementia”.  He prefers term “forgetfulness”, which he employs in text.  I would disagree on that point, because forgetfulness is actually such a small part of the dementia picture for those who have diagnosis such as Lewy Body Dementia or Frontal-Temporal Dementia.  — Forgetfulness is an important element, but for me the hallucinations were a much more important element for the first several years.

But I strongly appreciate some of the techniques this book suggested to me as a person with dementia symptoms: sitting with person (no words necessary), finding new meaning and purpose AFTER diagnosis, Where do most frequent brain changes occur, and what can I do to maximize use of the areas of brain which are most usually retained longest (like art & music) in my strategies for work-arounds in my daily routines?  List some of my own communication hints (Part3 of book), as I encounter complications, that I can provide for others.  Thoughts on the role of bereavement from loss of abilities, in my own progress with dementia symptoms.  Nader definitely had a role in triggering not only this particular blog entry … but my decision to create a blog at all.  THANK  YOU !!
819Ph Bk Deeper 5in Lo
Some excerpts from introduction are quoted below:
“In this book we highlight a basic attitudinal shift:

  • Dementia is our teacher.
  • Rather than simply a disease, dementia has purpose and meaning.
  • Rather than being people simply in need of our care, people who forget can teach us about life and living.
  • Rather than a burden, people with dementia offer us an opportunity to deepen ourselves, to go deeper into our souls.” …

And later: “Being with forgetfulness indeed takes us deeper into the soul.  Whether we experience forgetting in others or glimpse it in little moments within ourselves, forgetfulness offers us a gift, if only we are capable of seeing it as such.  Perhaps loss is always a gateway to the real gains …”

And last but not least, this excerpt; “For those who can truly lay aside their aversion or discomfort and learn to accept what is, the gifts of the soul await; equanimity, intimacy with the dream-world and its magical ways, slowing down to the speed of soul essence.”

It took several tries for me to understand the text of this book, but even on the first try I could understand the brief blurb-balloons for the cartoon explanations that go with each page. VERY much appreciated the positive perspective offered by this book. Publisher http://pacificinstitute.org/eldersacademy.php#deeper still has it available $14 (softcover) and $20 (hardcover).

Related Links

819 blog 20160119a 3in100ppihttps://truthfulkindness.com/2016/01/19/impact-terrors-dreams/ ;

 

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Exercise with Dementia

Tru here.  The newest DEMENTIA  MENTORS dot com video https://www.youtube.com/watch?v=Fcv-CtYdrwE includes the one I did on exercise in the beginning stages of dementia.  Pass it on! DM Exerc 20140731 pic 300dpi4in

 Text listed below:

Text:
I exercise to keep relationships with the ones I love.

We don’t give medical advice so I will just tell you about my exercise as a person with the beginning stages of dementia.

When the doctor told me that exercise has proven to be more reliable than any medicine, for all forms of dementia, I said that it was the first step for me then.

When possible, someone walks with me outside. I need to use a walker or canes because my balance is poor.

We asked the doctor to sign a prescription so that I could have a treadmill walking machine for the days when I can’t walk outside. With the prescription and diagnosis we took it off on income tax. On Craigslist we found a used machine — what they call a “rehabilitation” model, which provides the bars that I hold to keep my balance when walking.

My first 10 minutes of exercise are devoted to my care-partner. I pray for him and think about him during those minutes. Then I go on to other loved ones and myself. I consider this one of the greatest things I can do to retain my ability to communicate with my loved ones, so it is very high on my list of priorities.

When lab studies were done, they used the standard of walking six miles a week, so that is my minimum. After that is done then I can do other exercises on any days in between.
When it is possible, walking with my loved ones physically beside me is extra-special! (Video ends with very short video piece of me walking with grandson.)

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Posting Memoirs

Tru here. I have begun posting memoir pages at right upper corner of this website, found under top header; some browsers show it as a drop-down tab labeled “Bits ‘n Pieces … Memoirs”.  My husband’s iPad shows it as a drop-down menu icon in upper right corner with no title, beside the search magnifying glass icon.

Inside that drop-down menu are more than a dozen pages from my memoirs, The title of each page begins “BnP” (for Bits ‘n Pieces).   Only one page can be read at a time, then go back up to the drop-down tab to read the next page.

Cover for "Bits 'n Pieces of Me: Memoirs to retain identity in the face of growing dementia"

Cover for “Bits ‘n Pieces of Me: Memoirs to retain identity in the face of growing dementia”

I realize this is a poor format for a book.  If someone knows of a better way to post my book online, please let me know by leaving a comment here or at my FaceBook page at https://www.facebook.com/truthful.kindness .

I appreciate comments from all, but especially from fellow persons with dementia, on readability and whether pages are helpful or inspirational for you.  At some time in the future I may publish as book, so input is appreciated.

UPDATE:
Thank you so very much to those persons attempting to read Part one of my memoirs yesterday! My blog stats show over 100 people tried to access Bits ‘n Pieces memoir pages yesterday, and only 14 people succeeded in getting to the BnP memoir pull-down menu with the actual pages of book. For those who had difficulty making their way to the actual BnP memoir pages, and would like to do so, I have posted them on a Pinterest page. It is not ideal either, but may be easier than blog format. Pages are listed as “BnP’ then (Part) 1 (dash) (Pg)#. To read, each page must still be opened separately, so suggest right-click and “open in new tab”. That will open Pinterest page in another tab, where you AGAIN click the picture, and it brings up the original Bits ‘n Pieces memoir page on my blog. When done, just close that tab and return to the Pinterest page, where you find the next page number and repeat the process.

There are 15 pages in part one, ending with the first big traumatic event in my life. Hope you enjoy. If anyone has suggestions I am still looking for alternate format in order to continue posting parts 2 and 3, since this doesn’t seem to work well. Hope you enjoy!   Link is at http://www.pinterest.com/tkindness/bits-n-pcs-of-me-bnp-instructions/

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