Death of a Loved One: Crossroads & Lifelong Scar

So many have come and gone since the deaths of my husband and then my mother as I look at a calendar. 

Husband in January 2011 and mother in January 2014.  

Moving into this "holiday time" with memories of loss of loved ones brings tears and laughter.

Changes, differences, accomplishments and achievements, positive and negative... it's life as it was becoming, life as it was lived before, and eventually years after, both were no longer living and with our family.

My Blog has captured a thimblefull of the waterfall of life experiences and many challenges that seemed to be insurmountable.

We faced each one, my daughter and I, rowing the life-boat through one wave after another that started small and grew to  tsunami size.

I recall last Summer, early one morning, daughter left for a day on a local river. Ever the mother, no matter what her age, I find words to express a little concern and a lot of love -- typical Mom stuff -- as she makes time to enjoy this special opportunity to be with friends. 

Swimming pools were not everywhere when I was young and so I never really learned to swim. I tried and made sure our three had swimming lessons and shared time with friends "on the water" and we took trips to beaches.

I "learned" to be around and sometimes in, but never really "took to" swimming pools, lakes and even the ocean. 

They can be beautiful, they can be treacherous, I love to look, admire and put a foot into, but an avid swimmer I have no interest in being.

Events we experienced along the way, during and afterward; many are still fresh and even influential in our life choices while others seem so far away, so distant and almost surreal.

How long has it been?  Really......? Or, That  Long ?!?  Family funeral on my husband's side and I'm surprised but then realize everyone's life takes different paths and only occassionally do we meet at a crossroads, like a family funeral.

Perspective. Compare it to if you're playing the music or listening -- most people don't pay attention to the individual notes, the notations written by the composer or even the exact nuances provided in the interpretation by the conductor. 

Those who participate in the action of the moment while it's happening, those who are most connected to the event, usually are the most influenced and affected.

Why is the death of a loved one like a lifelong scar?  It hurts when it happens, in the healing process there's concern for how long it will take, if it will ever heal completely and if it will someday be "unnoticeable".

The scar is a reminder. We choose how to see it and it will vary in appearance many ways many times as we move forward continuing our journey.  

Some will change their lives completely and the scar will minimize or even seem to disappear. 

Others will carry it and it will grow more prominent as the days, months and years pass.  

Finding the balance in life with this time and what follows is the key to continuing moving towards carrying, shifting the load and moving positively onward.

The "shock" of discovery, of finding 'hidden agendas" and "planned deception" and realizing it was like a puzzle where pieces were around you but not seen.

You look around and spend time while your loved one is in the hospital with Doctors and staff.

You attend "meetings" where the advice is -- "He needs to gain weight. He needs to eat more." It was a "continuous chant" by his attending staff including several Doctors.

They knew the truth. They created the problem They tried to hide it by creating a notation in the "patient record" stating a male Doctor who was not in attendance made an incision. "HE" was a "SHE" and not a Doctor.

The "scar" appears when your loved one leaves you -- it's there to remind you, invisible though it may be -- a precious life was lost and Hell on Earth was created by a voice on the phone directing a procedure without having the ability to see the physical area and who should never have asked someone who did not have surgical training to "cut into".

It took days and weeks spent in a special hospital area spending time that should have been spent alongside my husband but instead had to be spent in front of a computer picking away, line by line, paragraph after paragraph, hundreds, if not thousands of pages, for a hospital stay of 100 days.

It just did not add up. Why was my husband not getting better? Gain weight! That was the constant "mantra".

Medical Records tend to be challenging to comprehend. A lot of medical jargon and the continuity is lacking. It's not like reading a book or a magazine. It jumps around as each person "attending" each "incident" or "action" happens.

Then there's the "medical language" which requires a medical dictionary or sometimes interpretation.

The most alarming part is when you stumble across an entry where you were present for what happened and you see . . . 

A FALSE, MISLEADING AND DECEPTIVE STATEMENT

You should have sued many have said. 

Why did they falsify information, I was asked.

When crisis after crisis is happening and you're trying to find some way to understand what's going on, discover a link to a procedure which was totally wrong, done by a "woman" and NOT a "man" as was stated in the record.

NOT done by a Doctor, maybe not even a Nurse, or at least not one with any form of knowledge concerning the history or condition of the Patient she was told to "cut into" 

Or ...the knife slipped and instead of "lancing" it became cutting 

...Maybe, because of the status of the medical situation, she was not medically capable or trained specifically at the level needed for the procedure mandated by the Dr on the phone call and "she" was not medically capable enough to do anything other than FOLLOW ORDERS GIVEN BY PHONE 

. . . Question came to mind: how many "procedures" in ER's are directed by a Doctor on a phone call to someone in the ER and what qualifications are mandated by medical procedures for someone besides a Doctor to perform in an ER?

...Dr was not available in the Emergency Room at the time and "she" called one who made a decision without seeing the "patient" or "examining" him.

NOTE:  For those of you who are wondering why we did not sue the Dr or the Hospital -- death, financial challenges just hanging on, no one advising us to take that step, a friend who was a Doctor at the Hospital we thought '"had our back" .

The complications of responsibility of living as a family unit with my Mother who was experiencing more physical, medical and emotional needs and so we moved forward in a different way.

The addition of my husband's older brother being admitted to the same ER a few "doors" away with serious medical concerns and finding out his oldest daughter was taking her father "home" as she said,"to die". 

Aging Mom with medical challenges, brother-in-law in same hospital with complications of a daughter wanting to "get it over with" with her father.

Calling my second son to tell him about his father's advancing condition being told he was walking in his father-in-law's funeral procession.

We hadn't talked for a few days and the news was like a knife cutting through as I looked down at my husband, my son's wife's father-in-law, with rising concern for another life -- old wive's tale about death coming in three's when it comes in twos.

Today, I somewhat regret not pursuing what I feel was a major medical mistake. And, that they carried it farther and put my husband through a "procedure" where they "explored" the area which had to escalate and cause the extended stay, complications, and I added to his traumatic death.

They at least had the decency not to provide us with a bill commensurate with his stay but we had so many other costs and losses.

A Lifelong Scar I carry with me. 

One that will possibly never completely heal.

Sharing & Caring Builds Awareness & Action

I want to share my shock/surprise when I returned from my last trip in September to learn more about Senior Living and Senior Life Challenges and saw a number for visitors I thought I misread.

Surely that was 2,000 -- not 20,000? And climbing! 

Thank You. Please continue to read and pass along!

Look at the diversity, the inclusion, the wide and wonderful world!

United States, Germany, Canada, United Kingdom, Finland, Singapore, South Korea, France, Czechia, Brazil, Netherlands, Vietnam, Australia, Cambodia, India, Hong Kong, Israel, Sweden, Indonesia, and even a category marked "other"!

I wrote to "let it out" as the grief over not being able to see what was purposely hidden by the system throughout our country called "Senior Support" and "Long Term Care" is destructive and demeaning.

. . . and being told by one particular close family member I was harming people I loved, valued and respected, who lived on the other side of the country and rarely took time to connect or visit.

I'd start writing an entry and sometimes it would be days or weeks before I returned to add or complete one to publish or hold for the future. It wasn't an "easy write".

Last I'd seen, there were a few hundred "hits". Admittedly, I didn't check frequently, it was a "diary" of sorts yet hoping others would see the truth and the challenges needing to be changed.

After the trip, it was over 20,000 "visits".                                                                              I thought I'd read the number wrong.    

LBD, Lewy Body Dementia, had become more "visible" possibly because some well known celebrities disclosed they had this form of Dementia. Whatever woke us up as a society, it was a call to change.

It was so amazing to know someone, somewhere saw the light I was trying to move through the darkness of family life living with LBD.

My words reach around the world. . .  I am not alone!

My courage to walk onto this space, to share times that were life disruptive for our family.  To include my "self"; show how vulnerable, uniformed and lost I was; but the return could be others who didn't have to walk through the pain and suffering.

Trying to find a way to survive, to show "what's behind the curtain" of aging. Expose people who wear masks; harmful actions taken in trusted places.

We were and continue to be a family changed forever. . .                             

Thank You for giving me the courage to share and to continue to work toward more enlightenment.                                                                     

To change the desperation and darkness created by others, to hope for a better today, tomorrow and the future

For all ages and stages, everywhere a voice can reach, through the written word translated and understood.                                    

We face the unknown together sharing what we learn, bringing light into darkness and hope replacing despair.

Seniors Avoid LTC Like The Plague

When you no longer have the ability or the means to pursue life interests and you find yourself in a Long Term Care facility . . . 

Let's look inside where then and now are existing in a time warp because WE don't see reality . . . 

Until it's thrust upon us . . . and that's too late.

Come along with me to visit Mom's old SNC/LTC facility or drop into one and really look around, listen and learn. 

Mom stayed in her room; sat in one place; busied herself with what she had or found to do; and, waited ...waited...waited

to be told what to do, when to do it and how to do it. 

And this was when she was highly capable; it became far more challenging when she began losing capacity and capability.

Have you been told there will be "choices" and  many "opportunities"? Not in the "lower cost/lower class" mostly populated by "lower income producing and qualifying for Medicaid" residents.

No one really cared. 

They were understaffed and few families visited.

Mom had to initiate and show an interest, we were told.

She was taken to what she considered "mindless" and "childlike" activities that held no interest and she was bored.

The only computer in any type of accessible area was "off limits" and no resident was given permission to use it at any time. 

The computer waiting for an employee of the facility who had been given the ability to use it yet it sat in a room that was available to residents for "special occassions" by reservation.

We did not have the financial means and Mom's monthly check from Social Security went directly to the facility. 

Entering LTC, Mom lost the ability to control any of her SS. 

She was given about $30 a month and that was quickly taken from her in "services" from the facility. 

We provided for Mom, both daughter and I, working at low wage jobs with the goal to provide what we could and keep as much of our "prior life" functioning -- a roof over our heads, food on the table (no Food Shares back then), the lights and a/c or heat available even if only at the lowest levels, and more.

Mom "went into" a LTC not through our decision but through the manipulation and control of a "Church Lady" who came into our life.

One positive outcome was since she was "self admitted", 

I was able to finally get back into Mom's "good graces" after several months and she shared how the facility really treated her and we started searching for a "better place".

 

I looked long and hard to find for a facility that Mom qualified for -- we had to have her in Medicaid because she had no resources, no ability to pay, at that time, $3,000 to $5,000 a month for a shared room/bathroom. In today's marketplace, that figure can be even higher.

Those marketing pieces and glossy pictures and videos don't portray the reality of almost every SNC/LTC facility. Under staffed, run by people who focus on the bottom line (even the Not For Profits) and constantly besieged by more and more paperwork and less and less time to devote to services -- they are as "shelved" as the people they serve.

If you have the ways and means there are "better places".  But few in the Greatest Generation achieved the high financial status then required now to secure "good care".

Today's Baby Boomers are being "pushed" by many to get out and move to an apartment or residential facility. It's thought of by many as being "appropriate" and then "somebody else" has to shoulder the responsibility, the wants and needs.

Take a moment and stop, think and consider. 

What If YOU had to enter a Long Term Care Facility . . where would you begin, what would you look for, who would make the decision with you? 

Who gets good care?  Those who can afford it, with family members that include a doctor/nurse, attorney and well connected in the community. 

Like life, it's isn't just you get according to a cost,  you receive according to having influence and ability to affect outcomes.

Multi-Generational Living: Yes, YOU Can!

In November, 2010 , we ended our journey as a multigenerational family living together in the same home started in November, 1971 -- almost four decades.

I've written about a small part of that journey with Mom -- in reality a very small segment of about four years of the more than forty we lived together moving as my husband moved up the corporate ladder and then when he chose to "go out on his own with his own business" -- and the challenging time when an abuser came into our lives.

It's not a "new idea" -- it's been practiced for centuries among many cultures and it's been highly successful--multiple generational living under one roof.

What changed this practice for the Western World? 

Some say it was industrialization -- moving from rural to city areas and then to the suburbs. 

Some say the houses were "smaller" ---yet many "made do" in small apartments in the city with multi-generations; not everyone has had or has a home in the US and doesn't in other countries.

When did we start not being "neighbors", "family" and "friends in need"?

Yes, there are adjustments, concessions and even learning a "new way" to live with another person -- just like "living together" w/wo a legal agreement or document.

It's also like bringing home the first child and each child added -- it's a family, a growing and changing dynamic --where adjustments and considerations are a part of everyday life.

Think about how beneficial it is to have another person in your life 
someone to share time and experiences with everyday.
                   
It's a different kind of "life" and "living" -- less for the self and more for others.

It's like adoption.  You bring in a child or young person to your home, the family unit, only this is an "adult".

Have we turned to domestic animals to replace additional people? They're nice to have but they also require care, time and add cost.

There are differences, admittedly.... depending on the age of the child, usually the "family living together unit" is for fewer years...the "child" grows up, gains abilities, can share in the responsibilities of family life

THE ADULT joining the family grows older....usually experiences more "need" from physical or mental challenges.... has decreasing abilities and often special needs

We chose to have "an extended family under one roof", to provide for others in need who added to the whole of the family unit. 

THESE ARE THE VERY SPECIAL PEOPLE who everyday in every way are living a life of sharing their lives... 

My In-Laws youngest son had Down's Syndrome. 

It was the early 1950s. They were told to "instutionalize" him. 

They were advised not to "take him outside the home".

They chose to include Tom as a part of their family.

He was an active part of their lives. He went where they went. He was given an education (they worked to get Special Schooling and programs started). Tom (in younger years, "Tommy") was a part of our lives and proudly walked as a part of our wedding party.

Listen to your heart. Do what you believe is best for yourself and those you love.

Statements you may hear others say:

We should be able to take care of ourselves...all our lives
If you save enough..
If you're careful....
If you plan right...
You won't need to "impose" on anyone; 

you can afford to live SOMEWHERE ELSE....

Some can. Many can't. Especially as the years go by.

We've redefined the family in the past several years.

We've redefined relationships.

We've redefined so many areas of life but we still have a "hang up" when it comes to multi generational living.

Multigenerational Living ....this is the life we shared, we made together, we chose...and I am grateful every day as we worked to make it a life worth living . . .  for each of us

A relationship that enabled and gave value and opportunities to each family member.

A lifetime of caring, sharing and supporting one another through challenges & times of great joy.

Learning from one another and about ourselves.

We told Mom...who'd lived alone when I went away to college and since I was married, who worked and had her own apartment....when we learned she'd broken her wrist ... 

It's a choice you can make each day and you can choose to leave at any time. 

We will always be there for you whenever and wherever we're needed.

That was November, 1971 and in November, 2010 the manipulation and control of an abuser who came into our lives could not, in the end, separate our multi generational family. 

We, each family member, are who we are today because we opened our minds, our hearts and our home(s) to share a life we treasure now as we did when it was being created.

A family is created by the people who join together; it's not age restricted or limited to direct blood lines throughout.

Yes, YOU can become a multi-gene family. It's your life, not theirs!

Kelsey Grammer, Whoopi Goldberg, Teepa Snow Are Dementia Advocates

Reading this blog you might think we're negative and only see what's wrong with Dementia care especially in Long Term Care Facilities.

Our experiences are definitely more on the "dark side" of Elder Care and especially Dementia care but within the darkness has been ENGLIGHTENMENT and that is what we also share in this blog.

We realized we were not alone in our experiences. Advocating, becoming involved and networking, we heard stories similar to our own about Undue Influence, Abuse, Neglect and poor Senior Caregiving.

Generally, people who have these experiences are often consumed and confused just trying to survive another day dealing with dementia.

We've decided to raise our voices and provide actual personal experience with Dementia/Lewy Body Dementia) to build awareness and provide opportunity for advocacy and change.

There are a few prominent and easily recognized people on the "cutting edge" trying to change how Seniors with Dementia are seen, cared, and provided for. 

Teepa Snow is one of those rare individuals whose voice is growing stronger, louder and certainly more visible with her website http://www.teepasnow.com/  and parts of her videos which you can see at https://www.youtube.com/user/teepasnow

We found one of her videos when searching You Tube sometime after Mom was initially diagnosed with possible/probable Lewy Body Dementia in the mid or late stages.

At that time, there was very little on Lewy Body Dementia available on the web; this was Spring 2012 and it seems like an eternity has passed instead of just two years with the NEW and visionary entries on LBD on many sites. (Reposting this entry; it's now November 2023 -- almost ten years since my Mom passed.)

Teepa's approach to caregiving for Dementia patients focuses on her work with patients directly as an Occupational Therapist. 

This branch of Therapy, in our opinion, is the one least used in facilities mainly because there is very little financial support through Medicare and Medicaid for the general population.

In Mom's facility, almost all Physical Therapy was provided in a special area or room with varying types of equipment. It was "prescribed" and therefore could provide revenue.

Occupational Therapy tends to use everyday items to rebuild skillsets and can often be done outside of a specific location including the resident's room or the patient's home. 

In facilities and leaving hospitals for Rehab, the coverage by many private insurances and definitely through Medicare/Medicaid, is geared towards physical therapy with occupational therapy seen as aiding stroke victims and sometimes to regain basic skillsets like eating, dressing and other personal care areas. 

(Note added Oct 2023: Medicare seems to be changing and covering more Physical Therapy. Not certain about Medicaid.)

Teepa broaden's the approach of caregiving to every person, especially those providing the daily services (Aides, primarily but also Nurses and Doctors) to specific ways and means to touch, talk and see what is visible and what is hidden in providing care ensuring the safety and well being of individuals with Dementia.

We need more advocates like Teepa Snow within the industry of Senior Care!

HATS OFF TO VOYCE! It's the Ombudsman agency in the metro St Louis, Missouri area. They have changed to providing awareness, building knowledge with the general public and continuing to "supervise" Long Term Care within the limited bounds provided by the State of Missouri. 

YOU CAN MAKE A DIFFERENCE

The reality in many facilities is the Activity Department is the one that is given the responsibility of developing "social interaction" and various other areas. 

The challenge becomes anyone can go to Activities but you have to have "orders" for Occupational Therapy from a Doctor and that is reviewed for type and extent by the insurance companies both private, State and Federal.

What Teepa teaches are ways to live, work and play with individuals in various stages of Dementia. She also specifically addresses Lewy Body Dementia, how it differs and specific ways to cope with this roller coaster Dementia.

https://www.youtube.com/watch?v=U6kz-mcNNzo  and
https://www.youtube.com/watch?v=WRC3WLSQSq8

IMPORTANT NOTE: Teepa provides programs to various organizations and groups, some of her more informative presentations are located on sources not accessible through just searching You Tube with Teepa's name. Suggest as we have done you use her name and also a subject area like: Lewy Body Dementia.

You'll bring up various videos including one by Whoopi Goldberg who's become a spokesperson for the Lewy Body Dementia Association. 

Here's the connection to Whoopi's PSA: https://www.youtube.com/watch?v=FcSYg4xtVus  

and to one from Kelsey Grammer https://www.youtube.com/watch?v=eRg2RqQqnNo

Listen, Learn and Spread The Word -- 

Today, resolve to send three people this blog entry  or blogsite . . . 

it's important to their health and the health of family members and friends . . . 

to become aware of LBD and Senior Care Challenges and possibilities.

Thank You for reading my Blog, for positively changing our Seniors/Elders lives, who deserve recognition for all they have given, accomplished and endured.

CRITICAL READ: Dementias Have Personality Identifiers

IF ONLY I had known this article existed when we needed it:

  

Personality Changes May Help Detect Form of Dementia

https://source.wustl.edu/2007/05/personality-changes-may-help-detect-form-of-dementia/#.UG2PJYp39wY.email.

It was published in 2007 by Washington University St Louis in one of their publications usually not accessed by the "general public" in the early years of this century and before many people had continual access to computers.

None of Mom's Dr's ever guided or counseled me or my daughter or really brought up the subject of Dementia.

"Back in the day" even the first decade and longer in the 21st Century, Dementia was seen as a "disease" of someone who could no longer function, had to be constantly supervised or they could do themselves and/or others great harm.

I'd witnessed and stories were told about "behaviors" of my maternal grandmother. 

I was a child in a time when that meant we did not question and "seen but not heard" was the philosophy of the day.

Mentioned at the top of this post and worth a second time:

Personality Changes May Help Detect Form of Dementia was published  before Mom went into a facility. 

Most importantly, It was less available to the general public as Computers weren't in homes or libraries and Search Engines were in their infancy.

Mom's Doctors, those accredited by her Long Term Care Facility to provide medical care for her in both the first and second location, did not have a clue to what Lewy Body Dementia was.

We were told by a Social Worker with the DHSS (Department of Health and Social Services) with a Master's in Sociology:

"Doctors who care for men and women in Long Term Care Facilities, work in what are determined by the United States Federal Government DHSS and the State DHSS to be "medical facilities" and therefore, by practice, if not by certification or accreditation, are in the field of "Gerontology" based on the clients/patients they serve, the records they are required to keep and the focus of their practice with the facility do not allow time to do individual or independent research".

In other words, if it's not provided to them, required of them, they have no way of knowing what medical challenges have been discovered -- even if the work is being done in facilities in their immediate area.

It's interesting looking back and seeing now how one of our Nation's leading Educational Institutions with a World Class Medical Hospital, BJC Healthcare, affiliated with its medical program, is apparently ignored by physicians practicing in the field of providing healthcare treatment to the aged in permanent living facilities. 

Why? Because they, who "visit" and are not based in any specific Long Term Care but because it's more "lucrative financially" to "hit and run" meaning to "stop by and see" and possibly even "create notes without actual in person visitation but walking through the doors of rooms and notating a "visitation" and even an "examination".

WHO TAKES THE TIME TO CERTIFY THE RECORDS ARE ACCURATE when "they" have so much work to do and "they" see a "professional" (albeit often one with the ability to create and craft information from the resident's records or a "drop in" 

or "pass by".

Many LTC's are focused on the bottom line (profitability) and create their own chain of supply from food to medicine and everything the LTC uses and the people who work there use and the "residents" use.

The business of "supply chain control and manipulation".

We were "isolated" from communication with the Dr who saw Mom; he came to the facility and since she was the "primary" person, even though we had a Health Care POA, and was not considered "sedentary", she could make her own decisions and therefore we were "out of the loop".

Consider how profitable it is NOT to have a diagnosis of Dementia in a facility. Without it, the person can and should be allowed to make their own decisions. And yet if it's truly there, many are easily manipulated and controlled with the right choice of words and a little "encouragement" from someone who wears clothing symbolizing "authority" -- like a Doctor or Nurse.

What does that tell me about the quality of medical service given by Mom's "caregivers" in Long Term Care?

It tells me they're not really interested in providing care giving that doesn't involve prescriptions and that might lead to involving other medical personnel for whom there might not be the provision of medications or other charges the facility can use to add to its bottom line.

Sound like a leap?  Not really if you read other entries in this Blog.

It's the experience of watching Mom's level of medical care going from highly personalized, individualized care when we (myself and my daughter) were her care givers and advocates to being INSTITUTIONALIZED and becoming a "recipient" of "streamlined care" based on a degree of need having to be highly demonstrated (fever lasting for certain amount of time, noticeable infection (that wasn't always true) or demonstrated critical care need. 

We ensured Mom's health was monitored, the facilities are charged with monitoring but those who do the checking vary in their care, concern and even ability to carry out many procedures they're assigned. 

YOU SHOULD BE AWARE, in many States, Missouri where we live included, "on the job training" meaning learn through practicing on patients whether someone is beside you or on your own, in a facility where they sign the paperwork "certifying" the training and create the work records to "substantiate". 

Here's what we should have been advised concerning LBD:

Washington University St Louis

"Personality changes may help detect form of dementia"

May 29, 2007                  By Michael Purdy

"A simple personality test could help doctors more quickly detect dementia with Lewy bodies, a form of dementia often confused with Alzheimer’s disease, according to a study led by researchers at Washington University School of Medicine in St. Louis.

"Dementia with Lewy bodies is the second most common neurodegenerative cause of dementia. It shares many characteristics with both Alzheimer’s and Parkinson’s disease.

"Getting the correct diagnosis is important because some medications used to treat the mental health symptoms of Alzheimer’s disease can be potentially dangerous for people with dementia with Lewy bodies."

“Patients with Lewy body dementia often have hallucinations and other behavioral problems, so they’re frequently treated with antipsychotic drugs early in the course of their illness,” says lead author James Galvin, M.D., assistant professor of neurology." 

“However, some types of antipsychotic drugs may put them at risk of serious side effects, so it’s important for physicians to be able to quickly determine who has Lewy body dementia.”

"Such side effects include neuroleptic malignant syndrome, a condition where muscles become rigid and the body’s ability to regulate its own heat production breaks down. This can lead to renal failure and death."

The study appears in the May 29 issue of Neurology, the scientific journal of the American Academy of Neurology.

In Alzheimer’s disease, a protein known as amyloid accumulates in the brain. 

Amyloid is also often found in the brain in patients with Lewy body dementias, but the key diagnostic indicator is the presence of aggregates of the protein alpha-synuclein in brain cells. These clumps are called Lewy bodies.

Lewy body dementia can cause fainting, hallucinations, Parkinson’s-like symptoms such as tremor, rigidity and motor impairment, intermittent alterations in attention and awareness, and memory loss.

The study involved 290 people who were part of a larger study and were tested every year for an average of about five years.

By the end of the study, 128 of the participants had confirmed cases of dementia with Lewy bodies, 128 had Alzheimer’s and 34 had no form of dementia. 

Researchers followed the participants through death, including autopsy results. 

During annual interviews, participants or their family members were asked about changes in personality, interests and drives.

Even prior to diagnosis, researchers more often found passive personality changes in people with dementia with Lewy bodies than people with Alzheimer’s. 

Such changes included diminished emotional response, disinterest in hobbies, repetitive behaviors, and growing apathy, or lack of interest.

People with dementia with Lewy bodies were two times more likely to have passive personality traits at the time of the first evaluation than people with Alzheimer’s disease. 

By the time of death, up to 75 percent of those with dementia with Lewy bodies had passive personality changes compared to 45 percent of those with Alzheimer’s disease.

I created these writings mostly to give myself a way to cope with the time daughter and I were going through with an unrecognized "Elder Abuser" to get through another day and eventually look back from a future when I believed we would be more informed, aware and capable.

WRITING THIS BLOG GAVE ME HOPE. It didn't matter if few saw it, read it or cared enough to comment. 

It wasn't  and isn't easy -- "washing and drying your dirty linen in public" which is what generations before would say about sharing personal information when I was growing up.

Turning a blog written almost as a Diary gives some release to times that were critical in the lives of our family with no resources, no direction and mostly conjecture AND has given me the ability to move forward not "spinning in place".

It has given me peace to know it was ignorance and policies in place locally, regionally and nationally that did not include the realities of Living With Dementia in assessing family relationships and individual lives.

What Is Needed Today and In The Future? (side note, reading and writing additional info in 2023) the doors to knowledge continue to be hard to find.

Groups and organizations who can provide are short staffed, under funded and working against many odds.

What's Needed?

Medical & Social Personnel at Long Term Care Facilities      

should present programs on the challenges & possibilities

of aging to the families of their residents.

Instead, even the RN who "runs" a facility usually spends time getting Continuing Education credits on many subjects not related to direct residential care but rather to record keeping and updates on State Regs.

Who will fill the information gap? 

Where will we find direction when wanted and needed?

Where are today's sites for family and caregivers that you don't have to wade through to find just a small scrap of information and instead arrange information in categories that are easy to understand for quick reference?

PLEASE HELP SHINE THE LIGHT INTO THE DARKNESS.

PLEASE ADD YOUR EXPERIENCES AND COMMENTS.