Breaking News LBD- Lewy Body Dementia Assoc

If you look hard enough, search relentlessly, connect far and wide, there are times when email brings great news.

Early morning begins my ritual going through emails searching for knowledge to share both in my travel business and through this blog, "Life Times Three Living With LBD".

Lewy Body Dementia is a Thief entering your life stealing parts of loved ones and friends memories and abilities. There is no going back, so far, to better times or stopping.

My direct involvement with my Mom ended when she passed although I'm convinced it could have been better for her and for our family if we'd known what we were all experiencing.

As usual I scroll through a list of hundreds of pieces of news, seminars, general updates and new opportunities, invitations for both life passions. 

Most are marked to "come back to later". 

Those that get my immediate attention included one from the Lewy Body Dementia Association. Almost jumping out of my seat I read the following:

Thursday, February 29, 2024

"During this webinar, Dr. Kathleen Poston, a leading figure in LBD research and care and co-lead of the LBDA Research Center of Excellence at Stanford University will discuss the recent advances in the development of biomarkers for alpha-synuclein, how they are changing research in Lewy body dementia, and how they may change clinical practice in the future. 

"Dr. Poston will also describe the two synuclein biomarkers that are currently available to physicians and provide a sneak peek into the potential for future biomarkers that may provide even more information to researchers and clinicians about the development and progression of Lewy bodies." See click through at end of this entry.

Please let me know in the comments section if you found this helpful and if you're considering or planning to attend. We are each helping one another by sharing, caring and coming alongside.

GREAT NEWS:  I'm working on a NEW BLOGSITE with more ability to add features, conversations and connectivity. 

YOUR VISITS over the last few months, from all around the world, encourage me to take the next step with this "journal" that is becoming a gateway to understanding.

Walking this path with a loved one you are not alone, it's a shared journey when we bring into the light what keeps us in darkness.

Each of us creates change. All of us make a difference.

ADVISORY:  This may be designed for the medical field so not sure if it will be for everyone. 

Suggest visiting the LBD website: www.LBDA.org

Taking Away The Keys -- I Dare You!

Daughter and I have some "interesting" talks -- to say the least.

They often arise on the spur of the moment; when least expected and as I've mentioned to her, need a little more "introduction" to the subject rather than what sometimes comes out as a comment or statement "out of the blue".

This was the question/statement the other day: 
"How do I (meaning "she") take the keys away?"

Now, I had just driven her for her carpool and we were sitting waiting for her ride and after a few moments of silence and time passing, this "thought" came out without any warning.

I've always championed my children at all ages asking questions and speaking about almost anything -- of course, they were also taught about "time and place" because others could be offended by some statements or questions.

Hmm.... don't like the sound of that now, what will I think of that when I am in need of "giving up" my precious mobility and freedom to come and go, work and play, here and there with whomever, whenever?

Well, for sure, the communication needs to start now. 
I get that. 

My daughter asked when my Mom stopped driving. 
Much better statement and approach.

I told her, complimenting her choice of words and saying to myself, "She's still a quick learner. Good for her. Now, hold that thought. Retain that phraseology and we're good to move forward into wherever and however life takes our journey together!"

Mom never had sight in one of her eyes except for a little peripheral vision and I don't remember her without glasses. 

She never remembered having sight in that eye. It's possible she did when she was very small and that as has been "conjectured" by some about the area where she lived when she was a child having some water problems in local rivers and streams where kids played that caused eye problems. 

Honestly. I never noticed a challenge. She wasn't a "daily driver" and when we moved to the house we lived in until she passed and where we lived the longest as a multi generational family unit, she sold "her car", the one we moved with us from Illinois to Pennsylvania and to Missouri as my husband's work opportunities moved us.

The location was a little more challenging. An older road at the time, a busier street to turn off of and onto. What age was she at the time? Younger than I am now. Wow! Just realized ....

She wasn't a person who wanted to "go out" with others; I'm sure that was because the majority of her adult life she couldn't have social relationships because we never knew what state my Alcoholic father might be in. Same reason I never really had close friends and we moved as much as we did. 

Mom went almost everywhere with me or with our family. She said when the children were in the car, she felt better sitting with them, spending time with them. I did errands and picked up the children from school without her but she didn't work, she didn't belong to any "clubs" or "organizations" and she chose not to go anywhere even though I constantly tried to get her to "go out".

She went shopping with me for groceries, to the Mall, to school for events and on trips we took as a family to the beach, to the mountains and to the cities to explore, have fun and relax. 

Mom also went places on her own travelling extensively on tours taking her to Europe, Asia and beyond. I think that "freedom to explore" and time with other people was a great benefit through the years. It gave her conversations with family and friends she met with us and lifelong memories until her ability to recall finally was lost to Lewy Body Dementia.

That was our gift to her when she came to live with us -- the use of her Social Security monthly check to travel and for whatever she "wanted" -- and monetary gifts from us so she could travel to some places and in ways her small allotment would not allow. 

We also took her on "family" vacations; two a year; we found great value in family time and getting away from the everyday world of work. We also provided for her needs of daily living until the end.

I know it could be more difficult for me than for my Mom -- not driving.

I don't have the eye problem I've been very active and involved in the community and in business and will be until I have to use Uber or a self drive vehicle! 

As I relay this thought of using Uber and/or a self drive car to my daughter she laughs because....she knows me....she knows that's exactly what I'd do. 

So maybe we won't have that mother/daughter talk and the ceremony of the "keys removal". What a wonderful thought to have, to be "free" to move more easily into the world, to continue connectivity, build relationships, work/volunteer/go!

We gave Mom the world and now the world may just be giving some additional "perks" to Seniors with new ways and new technology.

Originally published Oct, 2017; republished Jan 26, 2024

Millenials Move Into The Woods

Standing back looking ahead seeing Gen X move into, while Millennials suddenly become immersed in, REAL LIFE

Ticking clock has caught another generation.

Birthing, climbing the business ladder, entering the social system, life as we "older" generations knew it. 

The first generation to allow themselves to be "influenced" not by parents, families, friends-- by complete strangers who became extended family.

Another generation who worked hard to "stand out", be "unique" & "make a difference".

A smile on my face. We walked your walk, talked your talk.

Can you begin to imagine what you see in 'historical" coverage was actually life as a highly involved, voices raised, first real protesting Generation"labeled  "Baby Boomers"?

A generation who dared to raise their voices as the first large number of people all across the country, large cities to small towns, without technology, willing to be beaten and arrested for long awaited freedom and equal value.

Where's the "Thank You" for your service to the generation who brought forward nondiscrimination, valuing all ages, stages of life, making, changing laws?

Their grandchildren and great grandchildren seem to be focused on blaming or being envious of Boomers who survived, created lives continuing to change and expand quality of life and living.

Move Out Of The Way!  

Not said as Boomers did to discrimination, inequality, denial of basic rights -- against their ability to overcome, to survive and thrive, to accumulate against decades of strife and War.

My husband served in the Air Force Reserves. We were just married and his one weekend a month moved to two and then to every weekend. 

Go to your History sites and see how those Late 60's, Early 70's with demonstrations, burning Cities, day and night vandalism were not as peaceful as proclaimed.

Few "teens" had cars and the "pocket money" to spend and it was exceptional to have a "credit card". 

Wives had to have "permission" of their husbands to get a CC and he could also take it away. 

Or, if she had the courage to get a divorce, as my Mom did from an alcoholic abuser she had to continuously run from to protect herself and me, she'd have her credit card removed and ended up not having "credit" for any use. 

Thankfully she found a couple of rental properties where the owners were compassionate.

I remember all the immunization shots my husband had to have. At least that's what he was told they were. It was a time when there was "high alert" and no long range missiles or jets we now use for border protection. 

The arms race had begun but it takes time and money to escalate when everything possible is being used on foreign soil to protect others -- sound like today?     

To prepare for "when" they had to leave for far away places with strange sounding names. It wasn't an "if" for many as more and more young men stepped up to serve out of high school only to return in a wooden box.

YOU didn't watch classmates run on the football field yesterday and know today they were somewhere running for their lives while trying to stop the advancement of machines killing, maiming and ending lives of families and small children.

Today there are conflicts, some very serious, world threatening, but for many it's "over there" and "over there" and "over there" but NOT OVER HERE.

My cousin, Jim, went to Vietnam returning with memories so vivid he often couldn't sleep. He couldn't attend his wife's funeral and doesn't attend family gatherings. 

Like his Uncles before him, who served in WWII, he "did his duty" but could not completely leave behind the horrors of the battlefields and cities where innocents fell besides those trained to kill the forces that had just attacked small children and families he had witnessed.

Today we seem immune or at least believing "it can't" and 'it won't" happen "here". Others throughout history thought the same way. 

The Woods of Life have beauty and hide atrocities. Each generation responds in ways they believe, for the times, is what is "right" to do. 

Boomers, the ones who fought on battlefields created not of their design, giving time, and many their lives, are now faced with the Battle of Aging --those who remain.

War is all around. Some day, perhaps sooner than we want or expect, this "new" generation or their children, will be called on, expected to protect and defend.

When they return, if they do, will they face a future of being told they don't deserve what they worked so hard to get -- a home of their own, a place of peace of mind, where they could "grow old" having worked so hard to buy, maintain and manage through decades of challenges?

Respect. Honor. Compassion.

We've lost these values and many others believing "ageing" changes who we were, who we became and who we are.

What will we try to take away and from which generation in all the tomorrow's we hope will come?

As your forefathers and their life partners, will you honor or demean, take away or share, tear apart or support. . . 

The woods can be beautiful or dangerous; what is created becomes where we and others, of all types, live ... or not.

Elder Abuse By Trusted Church Lady

Why didn't we see the manipulation, control and abuse? 

Living and coping with two medically challenged family members whose conditions were in need of constant attention my focus was on everyday survival for all of us and  trying to find some way to "normalize".

Our financial means were very limited and barely paid the regular bills. A major medical incident with one person, in this case two, was stretching our finances and resources far beyond what we could manage.

My husband spent over 100 days hospitalized, almost all that time in Critical Intensive Care. Then a month in an LTC to try to regain strength and hopefully better health. 

In a hospital bed, on the first floor unable to climb stairs due to two then three openings on his abdomen, needing to have bags "attached and changed as they broke apart" to "catch" the constantly seeping fluids. 

I was his caregiver. Our Insurance did not provide this "feature" and the cost was prohibitive to hire someone. 

Daughter was trying to stay and finish College as her brothers had done. 

I did double duty as caregiver for my Mom who'd lived with us since 1971, she was aging and although we did not recognize her having Dementia, it was there. LBD, Lewy Body Dementia, is often less pronounced in effects and affects, often slow moving and also seen as "aging" when it's far more.

Let's review what we know about Julia... who turned our lives inside out, upside down as she tore our family apart. 

Julia, seen at our Church but not a friend or even someone we spoke with regularly, we attended early services and she preferred later -- until she came into our lives and we began to see her across the Church which was designed "in the round".

She "volunteered" with the SVDP, Society of St Vincent de Paul, and offered to have people in the Parish provide dinner meals for our family for the first month my husband was home.

I vaguely knew her from being a Eucharistic Minister and we both took Communion to a residence for Older People near our Church. What I thought I saw was a dedicated and caring person was actually a disrupter. She also mentioned "working" with some older people in their homes. 

Our Church had a large congregation and was part of a private school for boys and young men. We didn't socialize with her or her family; my husband was active in organizations, my activity was with the school our sons attended.

As our "ordeal" with Mom and Julia progressed, I found out Julia also "cared for" older people in their homes, many who did not have relatives in the area. 

A regular church attendee who works and volunteers -- on projects that touch the lives of "Senior" church members has opportuniites & possibiliities to do good or cause harm.

She's trusted as she's seen as caring and giving; "walks the walk" and "talks the talk" leading everyone to believe she's motivated to give out of concern for all; has access to records of who's sick, needing "assistance" and residing in a Care Facility. 

We didn't "grab a coffee", there was no "friendship" or prior "relationship", she often led the religious service at the LTC when the Priest could not attend; this was all before my husband and my Mom both needed constant caregiving.

When she came to our house after my husband was home from the hospital, there were "brief conversations" and she talked about "working with older people in their homes"; she never mentioned if she was financially compensated.

Not knowing where she lived or anything about her, I thought she was someone who needed to  "work", was never focused on where someone lived, worked or their way of life. I didn't measure people.

Imagine my surprise when I discovered: She had an Upper Middle Class life, her father was in Banking, lived in an exceptionally nice home in our area, she attended Church by herself, occasionally with her son, very infrequently to the service we attended regularly.

Contrary to what she led my Mother to believe, she wasn't from a "poor area" like Mom. Yes, they both came from a very large family, but that's the only similarity. 

Mom left school in the eighth grade to go to work; Julia went to a prestigious East Coast Private college where she was on the Tennis Team and ranked very high, winning awards.

Julia became an RN after undergrad. We were not "friends" or even "acquaintances" prior to her volunteering to co-ordinate meals for the first month my husband was home.

Julia had many privileges; Mom worked to provide for her parents, younger children in the family, to support herself.

Julia and Mom came from very large families of eleven children; Mom lived in a small town, small house, father painted signs and hung wall paper. Julia lived near or in a very large city, on a large property in Kentucky "horse country", her father, a banker.

Mom felt fortunate to finish 8th grade and get a job cleaning and working in a  house in the big city across the River; Julia went to a very prestigious East Coast College, played Tennis receiving many awards. 

Julia was more my age, but Julia "built a relationship" on false representation and comparisons and/or taking advantage of Mom's Dementia, which, as someone who "worked with", volunteered "serving" the "elderly", was easy to do.

They both wore uniforms in their work; Mom was a beautician; Julia became a Registered Nurse.

When the month of arranging dinners from Church members had ended, Julia volunteered to "take Mom out" as she knew with my providing in home care for my husband, was becoming very challenging.

When Mom first started "going out" with Julia she was using a cane; after a couple of visits, Julia said she thought Mom needed to use a walker; then Julia felt she needed to have a portable wheel chair. 

From early Spring into beginning Fall, Mom's abilities didn't change but Julia manipulated and maneuvered us into making the changes.

I thought they were going to the Mall and other places where it would be challenging but good exercise for Mom to walk those distances. Little did I know they were going to sit and talk and that was the extent of their "time together".

Julia constantly wanted to "visit" with Mom in her room or go upstairs and get her or take her up to her room.

This "request" began after the first couple of times Julia came to  pick up Mom. Going out was what Mom wanted and needed. We'd always gone places together: Malls and stores, parks and visits to friends and family. 

My husband's severe medical condition required 24/7 caregiving. He had an opening on his right side and it was not closing, instead it was growing wider. Doctors never told us why and another entry will bring to light what we didn't see at the time contributed to his physical problems

Julia became Mom's "best friend". A woman younger than I by more than a decade and my Mom was in her 90's.

Elder Abuse can be done by "trusted" people in your or their lives. A "wolf in sheep's clothing" as the saying goes.

If I'd not had the challenges . . . of husband's being in a hospital bed in our home with his abdominal skin continuously opening, needing bags changed. . . my Mom's aging and developing what we did not know or see was LBD. . .

.

Julia became more and more 'involved" offering opinions, trying to become Mom's "advisor", never to me, now realizing Julia was manipulative and controlling to gain control of Mom and her limited "savings".

Trying to find a Day Care for Seniors for  my Mom . . . I found an amazing place Mom loved but because it was a JCCA (Jewish Community Center) facility, Julia felt it wasn't " a place Mom should be". Mom wasn't Catholic like Julia and the Center was open to people of all faiths, all races.

It Was "The Perfect Storm" created and crafted by Julia leaving scars that remain today reminding me the work I do to raise awareness of Elder Abuse, to start programs in the community for Seniors. 

I work with Memory Care Home Solutions and direct people experiencing "Dementia" to a prominent hospital in our area, BJC, "Barnes" for short, well known for its focus on The Brain.

ELDER ABUSE  is not limited to WHO, WHERE, WHEN, HOW or to ECONOMIC or SOCIAL STATUS, AGE or PROFESSION. This is a critical message I want to deliver.

ELDER ABUSE can be done by all ages, stages, male/female.

ELDER ABUSE can happen right in front of you or behind your back and it can be allowed to continue in Senior Living through personnel and visitors.

Keep a Diary, Notes, Create Correspondence.

Above all, if it looks, smells or acts like Abuse . . . 

or if it doesn't . . . look closer, listen and ask your loved one. . . 

What did you do today with "X", at "X" for "X"?

Elder Abusers come in all shapes, sizes and are not necessarily those in monetary need. 

CONTROL isn't about money. . . , 

It's about POWER & SUPERIORITY.

Julia, never asked if she could help in any way with my husband or assisted us to find help in the community.

Her eyes were "on the prize".

 

She never took Mom to places where she might enjoy watching kids play, like a park, enjoy the out of doors and the wildlife or even to the Mall where Mom could "widow shop" and enjoy "people watching" as she often did with us.

Julia was focused on disruption and distraction.

Not succeeding in getting into Mom's room upstairs, where she could "look over" or "look through" items Mom might have, take something and then probably tell Mom she'd "misplaced it", 

She convinced Mom I was "after her money" -- about $4,000 she'd set aside for her "burial" and enjoyed counting and occasionally adding to it when she received her Social Security.

She took Mom to her bank with the money and opened a Safety Deposit Box with both Mom and her name on it keeping keys.

I was unable to see behind the mask.

I loved them both husband and mother.

I cared for each as best I could. 

I write, advocate, attend meetings to learn about aging and Dementia, travel to see and hear those who are making a difference and positive change for our aging.

           NOW IS THE TIME TO PROTECT OUR SENIORS 

               Their Lives Depend On Each One Of Us

                   

My Father's Belt In Oldest Son's Hand

My father, true to the times, believed a popular parenting directive --  "spare the rod, spoil the child"  

Dad used his belt, removed as a threat, prepared and on the ready, from the time he woke until he left our apartment, or went to bed where it lay beside him.

A constant threat, a reminder of who was "in control".

Applied on my body to wherever his arm could reach for any word or action on my part challenging his authority & his control and reminding me of his "right" to correct me.

I was an only child, or so I believed until I was an adult and realized the picture in a drawer of him, a woman, a young girl and a young boy was a picture of Dad's "first family". 

I had two siblings. To this day I have never met them. Since they were quite a bit older, they may no longer be with us. Guess I could do "Ancestry.com" but then I don't know what to say about why I connected . . . don't know why I would or even should.

Children of abuse and divorce were not seen and not heard. When people asked "What does your father do?" I was at a loss because I didn't know where, what or even if, he was working or somewhere passed out, sleeping "it" off.

Dad was an alcoholic. Drinking was a pass-time in those days. Men who'd been to War, either WW1 and/or WW2, returned "different" and alcohol numbed the brain . . . although it turned many into being "dependent" on this "drug", first of choice and then of "habit". 

My first born son, you've been a challenge physically, mentally and emotionally. Unfortunately, you have followed in my father's footsteps.

Your "belt" is your actions and words.You took that belt on line including trying to strike me harder through including people in the "chain of conversation" you thought might subjugate me to your wants, needs and will, or at least "humiliate" me into not disputing and questioning why you wrote untruths about me and about your family.

Sadly, you joined with another, a spouse, who expanded your reach and picked up the belt to add her own form of punishment often leading the way you chose.

I'm curious, firstborn Son: What did and do you get out of closing me out of my grandchildren's lives?  

You also closed out your father and for a long time your Grandmother who lived with us as a multigenerational family.

Like a small child you pick up your "toys" and leave because you choose not to face life realities -- ignoring them, covering them up, pushing them aside.Choosing not to face up to your actions and responsibilities.

One by one your children are becoming adults. One day they'll realize there are unanswered questions and total misrepresentations of facts and truths.

They'll question why their cousins saw "their Dad's family" but they didn't. 

We, your birth family,  know too much, experienced your abuse first hand and have the capability and capacity to discuss this with "the children", especially those who have reached the legal age of 21 when, and if, they get outside your control.

So many false statements. Inability to control yourself. Dangerous choices involving yourself and others --  because "you could find a way, you wanted to do it, or you just moved with the moment and caused severe challenges for others and yourself".

Since you were in High School, in College and after you graduated, we've hid the truth about your actions and the mental, physical and monetary damages you caused including that Summer day when you struck me to the ground and broke off my back teeth on both sides of my mouth then physically knocked your father down, beat on him and kicked him, causing physical damage possibly shortening his life.

Years later, you told me, when I mentioned I was going to the Dentist to get work done -- work that would once again cost a few thousand dollars -- I should have had repairs done "when it happened", not years later.  

I had. Breaking off two teeth meant replacement; this lasts about ten to twenty years. Then it's time to get another replacement. 

You took no responsibility and still do not. 

Your then "girlfriend", now your wife, moved to the driver's seat, started the car and encouraged you to "Run!" 

We learned you "ran" to the Church we attended. One of you apparently thought if we called the Police you would be safe; you would have "sanctuary".

We gave you a life of privilege filled with opportunity and possibilities. It wasn't that we were "rich" or even "well to do" -- Dad and I worked hard to give all three of you better lives, educational opportunities, and so much more.

The question remains -- why do I tolerate your manipulation and control of so many years when "the children" are entering adulthood believing their grandparents and great-grandparent didn't care about them when they were actually abused physically and mentally?

Perhaps this Blog will be seen by one of them who will have the courage to reach out, to ask questions and to look through the real history, the reality of what happened.

I will continue to hope and to pray that happens.

You returned our "gifts" by making decisions that could have greatly affected your safety and well being and even your life and that of your younger brother and a friend.

It began in High School, continued in College and into your life without care or concern how your poor decisions hurt others.

The "belt" you used will strike back at you as you wielded it towards others. Just as my father's did to him.

Asset To Society -- A Scary Phrase

"Asset to Society" -- A Scary Phrase. 

Who defines "value" in humans -- of any age.

To who do we apply this "measure"?

This gift of long life which we used to highly treasure?

To aged 16 who tell us they can drive so let them vote...

Raise the level of responsibility, consequences, too.

Bear the costs of your demands to be "grown"

Get out there on your own!

Give Us Your Homes! 

Scream the youngest climbing the hill.

They have no wisdom, only the "will"

We live in the future you live in the past

Our way is the best, yours was the last.

We are rising, we want, we need, we deserve

You've given, you've gotten, now we need to be served.

Go To  "Aging Communities" where over the Hill

Defines 40 as verging on needing more pills.

We'll lock you away, it's simple you see,

You won't have the funds, we'll control even when you p..

What steps will we take,

We already worship at the "young is best" gate

Move on, move away, 

You've taken and had.

NOW . . .  give up, give in, give it . . . to "ME"

We want what we want,

You've taught us this way

We won't wait . . . NOT a single more day

Most of all -- GO AWAY

Who makes these decisions, these policies?

Look ahead and behind and surely you'll see. . .

 

Generations before were taught "you have to wait"

Today we teach youth it's all within your grasp

Just reach out and you'll have . . . 

Whatever you want is yours for the taking . . . 

It isn't always necessary you do the making

Where are YOU on this journey of self over others?

If you aren't included, raise your voice

The others are shouting so loud there's no choice

Each day you draw closer to your time of devaluation

We are all necessary and provide variation.

          

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