Dementia, Death, and Dying

Tru here. Joseph Curl’s editorial in Washington Times of Sunday, July 20, 2014 is titled, “The politics of death and dying” and discusses the issue of dementia. http://www.washingtontimes.com/news/2014/jul/20/curl-the-politics-of-death-and-dying/#comment-1513965074. My response, posted July 30, 2014, is below:

Like many other dementia patients (those of us still able to read and write), I am offended by the generalizations of this article. I can’t speak for others, but I can speak for myself:

Sometimes I see pity in the eyes of those I encounter, but actually I am very, very rich … and I am aware of that.

Even when my Grandmother was unable to recognize herself and most of those around her, even though she was embarrassed when her daughter needed to clean her up — she discovered a brand-new appreciation of prayer life. And her eyes reflected the knowledge that she was loved by the people around her — whoever they were. She especially responded to touch. In our world today touch is a very unrecognized and completely foreign communication. I saw how important it was to my grandmother … and I am beginning to see touch with new perspective myself. Even in those lost weeks she had the assurance that she was loved. She was rich … as I am rich.

I do not dread what is to come. I have learned from those who went before me and led the way. This is not a NEW path, even though it is unfamiliar to me. Like my grandmothers, I will travel this path with honor and integrity. Like these before me who led the way, I am much loved. Thank you to those who truly love me and continue to walk this path and hold my hand. Please stay with me. Even now I often forget your names but I don’t forget you are important to me. My brain is dying, not my soul.

((No; my writing ability has not suddenly returned. The above comment, posted in response to the Washington Times editorial, is an excerpt from the epilogue of my unpublished memoirs titled “Bits ‘n Pieces of Me: Memoirs to retain identity in the face of growing dementia”. Is that cheating?)

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My New “Normal”

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PANIC: 

Tru here.  That’s right; it is time for me to go ahead and PANIC !!

Yesterday started out great, with my first https://www.dementiamentors.org/ one-on-one video call (free). She and I had a lot in common and I didn’t feel guilty about taking more time talking about the complications in my own life, where I might have in the multi-person environment of the Memory Café.

Yesterday, after repeated attempts to understand what I had written the night before, I just broke down and sobbed … then sobbed some more with the cat’s condolences. Bereft of perception, bereft of voice and bereft of influence; that is what it feels like to realize that I have lost that much ability in 12 hours. Understanding what I read has been increasingly difficult but this is devastating. I will take some time to recover and lick my wounds, so you probably won’t hear from me for the next few days. Hoping to find some new work-arounds; in the past I’ve been pretty good at that.

… And now, when I look at what I have just written, it makes no sense to me either. I hope it is not gobble-dee-gook because I am not able to effectively edit it. What about finishing my book? I’ve only got a couple pages to add, but now … ??

Not earth-shaking, influential news, but it is a window into my world today. Welcome.  2014-07/25

MY  NEW  NORMAL

Tru here.  Today is better than yesterday. As a dementia patient I knew the day would come, but yesterday was the first day that I couldn’t understand my paragraph, when I look back on it to make sure it is accurately reflecting my thoughts. The panic is not quite so disruptive; my upset stomach is settling down and I am not crying quite so continually. It IS what it is, and I will continue to write … so recognize, grieve, … and continue writing.

What if my portrayal is missing key factors, distorting the message I am trying to convey? Am I gliding from thought to thought or are there chasms between them? Am I mixing my tenses? I don’t know because I can understand a phrase, but that portion is gone by the time I attempt to understand the next portion of sentence or paragraph. …

YES!! ((jumping up and down in joy)) I said that I have been pretty good at coming up with work-arounds; I figured out my first one for my new normal. Read it aloud! Information coming in through more than one sensory channel is more likely to register. It is practically impossible for me to understand telephone conversations, but video conversations are a joy. In the same way, reading while also hearing the sentence is much more understandable. In order to better share this frustration, I will deny the urge to go back and revise the mixed tenses in my first paragraph. My new normal just became much more tolerable. 🙂

I took a deep breath and had turned away from my keyboard when the thought came through; “you know, this posting would be a lot better if I toss it with some of that new raspberry vinaigrette dressing … but how would I do that with words and retain the sentence structure?”  Isn’t that funny; it must be time to eat but it wasn’t until my brain kicked in with a picture of alphabet letters tossed in the air that I realized how ridiculous the thought was!  2014-07/26

.

SEQUEL

“Text Format” LINK >> https://truthfulkindness.com/2019/03/04/text-format-dementia/

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Service User

Tru here. Discussion of terminology for care is a hot-topic all the way around. These are my personal thoughts regarding the term “service user”:

In my experience the problem is not the impersonal nature of the term “service user”, but rather the consuming nature of the term. We are the “user”, “consumer”, etc. Our care “provider” is the “Giver”; the one who has what we will use up. It all emphasizes the one-way road of communication and support. It emphasizes our position of sucking up everything you have.

How would you feel about finding out that you could never again be the “giver” and the “provider”, but would be on the other end for the rest of life — consuming and using and taking?

It is no surprise that many dementia patients are in the process of arranging for assisted suicide … because we cannot live with the idea of imposing that on our loved ones. I know many people object to it as unrealistic, but I think successful care-giving is only when there is a partnership in the process.

Our family taught ballroom dance, and I think really successful care-partnering is like partnership dance; there needs to be a leader and a follower to create the synergistic flow, but it is necessary for both partners to step in tandem in order for that beauty and exhilarating experience to be created. The patient is the employer; the teacher of patience and the instructor for the importance of awareness in each moment. Teaching the tremendous power of touch and the awareness of soul and spirit is an important role. Our brain is dying but I don’t believe our soul is dying. In the process of meeting needs created during the long good-bye YOU can be the consumer and student as well as a provider.

I don’t have the answer, but I think someone needs to ask the patient what WE think in the issue of terminology!

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Desperate with Dementia

Tru here.

I have a couple dementia friends feeling desperately helpless, desperately scared, and unwilling to impose this life onto their loved ones who are willing to be their “care-givers”.  Maybe you are feeling desperate too.  Some have said they rely on my positive “sunshine” and I have a message to you:

My “sunshine” is a REFLECTION from our maker. The real sunshine in your life is that DIVINE Truthful Loving Kindness; the Love that intimately knows every cell of your body and every small portion of every thought you hold for a fraction of a moment. You are so very VERY loved that I think you would regret ending your life now. No one can make that decision for you, but you need to make an intensive search for your Creator FIRST!!

Like I implied in my July 2014 article “My Faith and My Dementia”, I believe that dementia interferes with almost every OTHER function in life, but it does NOT interfere with our search for the Divine. Instead I think we are somehow even closer to that ephemeral consciousness … if we are only open and willing.

Search first, then decide.
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Please Further Investigate Dementia “News”

Tru here.  I have dementia. My productive time and energy is becoming progressively limited.

As a dementia patient I must prioritize my activities. I am not feeling sorry for myself — I am being pro-active. My abilities are dwindling because my brain is dying. How much of the important things can I fit into my remaining brain-life? It is a question each human needs to look at, but those of us with dementia probably have much fewer months of “productive” activity to reasonably expect. So prioritizing becomes even more important.

As a dementia patient I must carefully limit my intake of news exposure because I know that over-exposure means needless worry and sleepless nights, which result in lack of brain cell renewal and even greater impaired judgment. So I limit my news intake to items that pertain to dementia itself, and of direct impact on those with dementia. These are things I can hopefully apply in my own life.

As a dementia patient I am indignant at how the test results from the study of cynical distrust and dementia in Finland, published late May 2014 at http://www.neurology.org/content/early/2014/05/28/WNL.0000000000000528, have led to implications of cynicism as a personality trait for dementia. This has been implicated in numerous articles including CNN, BBC, Science Daily, Alzheimer’s Weekly, Medical News Today, Health Central, etc. I hope to further investigate this particular study’s conclusions and compare it to the implications stated in the above articles, but you readers probably have greater abilities than I, in order to follow up with that comparison. If this was said of any other minority population I think the public would take action. But our minority mostly does not have the ability to speak.  Please speak for the many who can no longer speak.

As a dementia patient I am asking YOU; please don’t assume dementia news is complete and well-researched. Please investigate. Come to your own conclusions and SHARE those conclusions (then SHARE again)!!  Could you please encourage me by also sharing those conclusions and plans in a comment below or an email to me? Thank you.

UPDATE: As my husband noted regarding world conditions during the years that the brain of these participants was being developed;  “This was a very difficult time in Finland, along with the rest of the world! Growing up (oh wait, what was the death rate for children in those years?) what was the nutritional diet lacking in those years? What was the orphan rate in Finland during those years? What kind of authority figures did those individuals have to look up to? What is the root cause of cynicism?”.

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Nocturnal Leg/Foot Spasms

Tru here.

 Nocturnal Leg/Foot Spasms
(probably related to Lewy Body Dementia and Parkinson’s)

Here it comes again;
not childbirth labor, but very similar contractions.

Here it comes again.
Wake up! Wake up!

Tension increasing.
Foot tightening.
Foot twisting until inside of foot is straight up-and-down.
Quick! Get foot FLAT and maybe it will improve!

Tension increasing.
Leg twisting.
Toes curling.
Quick! Put weight on feet and maybe the leg will loosen a bit!

Oh G-d!
Please Help!
Quick! Jump OUT of bed, before it gets worse!

Unrelenting …
Tighter and tighter …
Oh G-d, can it get any worse?
Oh G-d; it CAN’T get any worse!!

… Then it finally releases.

I get back in bed and am just drifting off to sleep
when I feel the tension beginning again for another spasm.

… Then another … and yet another…

… Four times in the last hour.
It could be worse;
I have lived thru eight in an hour
(but each time I was able to jump up and get them stopped).
My left leg has become very strong from these unwilling, unrelenting calisthenics.

… But I am very tired. Somehow I’ve GOT to sleep!
I am getting desperate for sleep, … but here comes the tension again. … Oh G-d, Please HELP !!

– Truthful Loving Kindness
2014-Jul 17 at 4am

Dear Reader,
Please don’t get me wrong – comments, “likes”, and subscriptions are appreciated, but:
1) Appropriate blood tests have been done and this is not caused by lack of potassium, magnesium, etc.
2) I drink one half gallon water per day so not caused from lack of liquids.
3) These spasms have continued periodically during the past four years.
… I walk one mile per day and do regular stretches of heel/ankle.
… In fact, now the angle of stretch must be extreme to feel any stretch unless cramp is imminent.
4) Next step is specialist at Mayo clinic in Minnesota, and I am waiting for appointment.

Somehow there is a certain relief in just writing this and putting it out there in public.
… This is my life …

Note:

“Spasms” vs “Night Leg Cramps”; Night leg cramps are relieved by “forcefully stretching the contracted muscle” per Mayo Clinic.  But forcefully stretching does not seem to help my spasms.  Putting weight on the contracted muscle often helps though.  (( Mayo Clinic >> https://www.mayoclinic.org/symptoms/night-leg-cramps/basics/definition/sym-20050813 ))

.

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MY FAITH AND MY DEMENTIA

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Tru here.

Morning entry on Oct, 18, 2012:
I don’t know the process that puts oxygen into the atmosphere, but I have an integral faith that when I take a breath the oxygen will supply what my body needs.

I don’t understand how it can possibly be fair that one child is born with downs syndrome and another is a mathematical genius, but I trust that the controller of the universe is fair, and that somehow the apparent un-fair-ness actually IS fair.

The same is true of how I could have been given a warm loving family, with parents who were there for me and showed unconditional love for their beautiful daughter, yet another child has parents who can’t stand the sight of him, forcing him to live in a dirt basement away from the rest of the family, and beating his head on the sidewalk while telling him exactly how unloved he is.

… How can that be fair? But I know the love of the Creator, and I know that the boy was just as loved by the Creator as I am. And I know the power and justice of that Creator.

I can’t understand HOW those terrible inconsistencies are fair, but I know that they truly are fair because I know the personality of this powerful being.

I don’t know how dementia can be a blessing, but I believe that for ME it is. I have done enough research on it that I understand it is not a purely enjoyable condition, but I know the giver.

… Yes; somehow this condition is not a condemnation but a gift. And I anticipate the blessings it will give my life, and the world at large — as well as the cost.

Evening entry on Oct. 18, 2012:
* * * Since childhood I have prayed for this time, and it has finally arrived:
Even though the love of my family is very real, and they are truly there for me, I FEEL the love from my G-d with more intensity than I feel the love from my family. And the love I feel toward my G-d is truly equal to (or more intense than) the emotions I feel toward my family. I realized this during worship time, when we were told to “picture in your mind a person whom you love, and hold them in your thoughts”.

There is no person from whom I FEEL more love than from this ephemeral consciousness who continually holds me … and upholds me. (I need held a lot now, more than I have ever known before; but I am also already receiving it!) … And the love I myself feel toward this being that holds me is finally more real than any other love. Maybe this is part and parcel of the gift, or the gift itself.

I don’t know … but I do know that it is precious and I appreciate it.

 

Please reader, I do not need discussion on the difference between Creator allowing negative circumstances, and the concept of a gift.  I have years of background with Christian Systematic Theology.  I am talking about the relationship between Creator and ONE individual; me.

Spiritual Journal here >> https://truthfulkindness.com/about/life-other/spiritual/

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2011-11/15 Maybe I will write a book

Tru here.
THOUGHTS:
Where is my legacy? What true difference have I made in the world?
… Did my ancestors feel this deep sense of failure?

WHAT is my legacy? From my parents and grandparents I inherited the values of unswerving honesty and deep kindness; … transparent loving-kindness, always while giving the glory to our Creator. Have I passed on those priorities to my children so that they in turn can pass them on to their children’s children, and continue the ripples from my ancestors who bequeathed them to me?

This requires careful analysis. (Of course it does; am I not my father’s daughter?)

Genealogy is somehow a step in that analysis. I started looking into genealogy last year, and decided that it was a waste of time and energy; what difference does genealogy make? But now … what difference does anything else make anyway?
Everyone is wrapped up in their own little time and space.
The lives of others are a distraction … or even worse; they are boring.
Spare time is spent watching entertaining movies or playing video games.
The history of their great grandparents doesn’t have anything to do with the history of their own person, so what real difference does it make in their own life?

How can my life experiences assist someone else? How can my life make a difference in the larger perspective? I have heard the answer of “Salvation is all that counts, so go out there and pull in the harvest of souls”. But that answer doesn’t match what I have learned from the original languages of scripture.

So I am going back to studying our genealogy. After I have gotten names and dates as far as possible, as a gift to our ancestors I will attempt to gather stories of their lives; their overcoming obstacles, their transparent loving-kindness. And then, as much as possible, I will tell the story of my own life, trying to put it into perspective with the lives of my ancestors and the lives of those around me.

Right now I will not worry about whether it is a waste of time and energy. I will not worry about whether it is boring to others or not, or whether it will impact the life of anyone else. I am doing it as a gift to my ancestors … and for myself.

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Chapter 1 Unpublished Book “Bits ‘n Pieces of Me: Memoirs to retain identity in the face of growing dementia”

Tru here.

2013-01/24

Decision time has arrived.  I knew this day was inevitable when my doctor gave the “probable dementia” diagnosis six months ago, at age 54.  It’s not like I don’t know what to expect because I saw this disease path first with Mom’s paternal grandmother, and then with her mother.  But … I thought I would have more time.

My coping skills are still good enough that most of the time I hide this illness well.  Even if I say the word “dementia”, people shrink back in horror but then chuckle and deny the possibility; “No; YOU definitely do not have dementia!”  But nevertheless …

Last year I lost the ability to understand the more complex stories on my bookshelf.  University and seminary textbooks were first to be set aside.  Then disaster hit.

 

Jan 24th was a hard day so I wanted to console myself with the cowboy stories that my great-grandmother introduced when I was in sixth grade.  I reached for one of the leatherette collector series by Louis L’Amour.  My husband bought this set of over 100 books for my birthday, and recently finished building the beautiful oak cabinet to house them.

The problem is that I cannot track what is being said in the book.  The author is describing location, but I cannot remember the start of the sentence long enough to get to the end of the sentence.  So I try to skip ahead to what I CAN understand.  After a dozen pages I give up on the book.

Sometimes this happens in conversations, and I have to just “play along” until the conversation gets to what I CAN understand.  Usually that will happen sooner or later.  With some people (like my Mom) I will stop the speaker and explain that I am just not getting what is said.  “Try to keep the sentences short, okay?”  Sometimes that works and sometimes it doesn’t.

… So I tried a different novel.  The same thing happened.  These are uncomplicated novels, listed at 6th grade reading level.  I can read the words, but cannot gather the single-word meanings into sentence concepts.  … And then I cried.

When I was in 6th grade my teacher, Mr. Fisher, visited our house.  I was in the “advanced” math group, and knew that I was doing well in school, so I was surprised that a teacher made a private visit to talk to my parents.  He was concerned that I seemed to live my life through books instead of getting out and experiencing life first-hand.  Now I am afraid this 55-year-old bookworm is running low on available books.

I told myself, “It must be time to go to bed.  Maybe it will be better tomorrow.  This was a hard day, and I am just too tired for my brain to hold the concepts.  Probably it will be better tomorrow.  Yes; … it will be better tomorrow.”

 

And Life Goes On:

… But it was no better the next day, or the next week, or the next month.  So now I need to make a decision; what am I going to do about it?  How can I prepare for the day when I look in the mirror and ask (like my Grandmother before me) “Who is this person?”  I need to compile bits and pieces of who I am, so that when that time comes, someone who loves me can read it to me.  I can listen to the names and events, and it will be a fresh new story each time I hear it.

… So this is the story of how I came to be who I am, and what has prepared me to live well after my Dementia diagnosis – in “Bits ‘n Pieces of Me”.  Most pieces were written by me, but some by other family members.  Some pieces were written a very long time ago, and some pieces very recently.

Welcome to my world.
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I am from Truthful Loving Kindness

Tru here.  ((From birth to 50 years old, life prepared Belinda to live well with dementia diagnosis.))

I am from Truthful Loving Kindness

… from the snug haven of a home created with the anchor of G-d’s truth and the rose of parental love,
 inside a greater world of uncertainty, pain, and illusion.
I am from the look in Dad’s eyes as he sang
“Have I Told You Lately that I Love You” to my mother.
I am from the look in Mom’s eyes as she cared for him while he died.

I am from “The Chippewa Song”:
I am from a FATHER,
exhausted after long hours of working two full-time jobs,
suspending me over his toe-tips
while teaching me to dance the swing; 
I am from the fun of riding behind Dad in the motorcycle and sidecar, 
holding a warm, foil-wrapped baked potato in my lap. 
I am from working evenings at Coach Service,
fire-lit evenings with his harmonica, 
impromptu poems composed at bedtime,  … and morning coffee breaks. 
I am from the shock of seeing him after cancer surgery,
on a breathing machine with tubes coming out of his body; 
… from the knowledge that he probably would not live
until I reached the age of high school, 
… and then from the joy of having him at my graduation ceremony.

I am from “Beautiful Beautiful Brown Eyes”: 
I am from a MOTHER
in the housedress of unconditional love, 
dancing me to sleep when my tummy hurt. 
I am from the love that always had room in the house to care for
one more … child, 
or one more uncle, or one more great-grandmother. 
I am from marshmallow roasts,
sledding down the hill by the light of swinging lanterns, 
helping with homework, … and quiet good-night prayers. 
I am from the smell of homemade bread while warming myself
between the old wood cook stove and metal cabinets, 
… from the knowledge that she would always be there
to share my problems, if I would only let her, 
 … and then from the joy of learning HOW to better share my life
with her.

I am from lots of songs while washing dishes; 
I am from whispered girlish secrets in the dark,
and gales of giggling in the light, 
… from the look in Mom’s eyes the first Sunday that
there were only three children to dress for church,  
— instead of four.

I am from funeral songs: 
I am from the look in Dad’s eyes when
there were only two children, 
— instead of three, … and then … 
… from conversations regarding the process of death,
regarding the importance of family, 
regarding G-d, and what it might be like to live in Heaven.

I am from wedding songs: 
… from finding the truth of G-d’s love AND the rose of marital love, 
both inside a greater world of uncertainty, pain, and illusion. 
I am from the security I feel when I praise G-d,
and the answers when I pray. 
I am from the look in my husband’s eyes as he holds me up
and dances with me in the living room. 
I am from the smell of the ocean and the sound of the surf, 
…while watching him build our house with his own two hands.

I am from songs sung to my children:
… the Chippewa song, bedtime songs, songs when working,
and songs while hurting.
I am from songs to express joy in life and love.
I am from songs to keep my mind off pain.
I am from songs to keep perspective in G-d’s plan.

I am from facing pain, loss — and death — with truth AND dignity.
I am from facing love, joy — and life — with kindness AND honesty.

Truthful Loving Kindness
I hope I can pass it on to those around me. (2007-09/16)

((Wrote this five years before my dementia diagnosis, in honor of my legal name change to Truthful Loving Kindness on 50th birthday, 2007-09/16.  This is one of my reading choices when feeling discouraged with life as a dementia patient.))

>> https://truthfulkindness.com/bnp/

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