Exercise with Dementia

Posted on August 3, 2014 by Truthful Kindness

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!

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.)

* 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 2014-08/03.
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Posting Memoirs

Posted on August 3, 2014 by Truthful Kindness

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”

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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Dementia, Death, and Dying

Posted on July 31, 2014 by Truthful Kindness

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?)

* 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 2014-07/31.
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My New “Normal”

Posted on July 26, 2014 by Truthful Kindness

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

Posted on July 24, 2014 by Truthful Kindness

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!

* 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 2014-07/24.
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Desperate with Dementia

Posted on July 22, 2014 by Truthful Kindness

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.
* 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 2014-07/22.
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Please Further Investigate Dementia “News”

Posted on July 20, 2014 by Truthful Kindness

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?”.

* 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 2014-07/20.
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Nocturnal Leg/Foot Spasms

Posted on July 17, 2014 by Truthful Kindness

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 ))

* 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 2014-07/17.
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MY FAITH AND MY DEMENTIA

Posted on July 16, 2014 by Truthful Kindness

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/

…

Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

2011-11/15 Maybe I will write a book

Posted on July 14, 2014 by Truthful Kindness

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.

* 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 2011-11/15.
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Person with Dementia Symptoms

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