Signs of Advancing Dementia

Part 1 of 3 .

Originally posted April 8, 2013.

Mom would pass January 2014.

More than a decade has passed. 

I miss her. I miss my husband.

These are the steps in life 

we do not choose to take

.

They are the times that challenge

 even the strongest.

Lewy Body Dementia 

has been trying to destroy our family.

It's making great progress 

with the help of people who chose 

not to see or accept the reality 

of this destructive and devastating 

terminal disease.

Fast forward 

with a few steps backward. 

Spent four hours with Mom 

from five to nine last night.

Had a phone call around 1 PM, 

it was a Sunday, 

alerting me Mom 

had fallen in her shared bathroom 

at the Skilled Nursing Center (SNC).

Was working, 

couldn't get to her right away.

Made sure she was not injured.

Held my breath 

wondering what I might find 

when I arrived.

Falls are common with LBD

as the body motor functions 

& mental functions 

do not always work together.

Her feet "stick to the floor" 

is how she describes it.

(Mom blames it on 

her "new" shoes; 

slippers she's worn 

for many months).

Her arms do not support 

the shift in weight 

from wheelchair to commode 

(she will not ring for help; 

they take too long; 

they're too critical).

The reality is the brain's messages

 do not always reach 

their intended functioning part 

while the brain believes they have 

and so an "accident" happens.

 

The internal organs

generally move to some degree 

but not with the support or ability 

the body should have

to "pass along" not just "eliminate".

There are many reasons for her refusal

including the most obvious: 

Mom wants to retain control 

of the basic parts of her life -- 

toileting is one of the most basic. 

Part 2 Will Be Posted 

Saturday, Sept 27, 2024

at Midnight, CST, USA.

Masked Faces

Cell phone pictures 

can be chronicles 

of life and death.

How often we                                                                            

"put on a face" in life. 

Smile for the camera!

We see the surprise, love,                                                                                               caring, passing of time 

on her face.

I just went through 

pictures of Mom.

In boxes & on my phone.                                                                                     Snapshots from 

the years of her life, 

our life together.

In later years 

so many pictures of Mom 

"daydreaming".

Appearing to be 

somewhere within her mind. 

With us sometimes briefly 

and sometimes deeply.

Her eye focus changed.

I see that now.

 

Her facial expressions lessened.

Smiling, reacting, common reactions 

faded slowly -- at first.

After her last birthday, 

we noticed she was losing                                                                                                                                                                                                                                                                                                                                                                                                                                     the ability to remember 

common actions.

She didn't understand 

how to take the wrapping paper 

off a present and couldn't open 

the untaped box with new clothes. 

Mom always tried to 

open packages with great care.                                                      trying to "keep the paper intact --

to use again".         

Valuing, knowing the end of time

comes without warning.

Being prepared meant survival.

A child of very little means growing up. 

A young woman during the Depression.

 

She taught us to "use it up, repair it, 

make do or do without".                              

Lessons for survival 

providing more 

than we'd ever expected.

I remember her ability to communicate 

and even seem to be cognizant 

to one degree or another 

up until about two weeks 

prior to her passing. 

No one prepares you 

for this major capability change.

My first blog entry was  

"When the Child Becomes The Mother" 

As I re-read this and other entries

I know the time has passed.

It just doesn't seem possible 

it's more than a decade.

I had no idea then it would be 

less than a year after that date 

Mom would leave this life. 

Looking back, 

reversing roles 

started long before that date;  

many adjustments 

to ensure her safety, 

her personal well being.

Subtle messages 

of what was to come. 

Trying to survive, work, 

visit her every day, 

we didn't clearly see 

what was happening 

before our eyes. 

Life moves 

in multiple directions 

all at one time.

LBD is a MASK 

like those worn for 

Carnival or Halloween.  

(Today, I can also reference 

masks we wore during COVID.)

Face coverings with a stick 

someone puts in front of their face 

meant to hold it in place 

or it can be removed to see 

the "real" person underneath.

Later, it appears to be

the kind that are put on

and have a ribbon 

to tie in the back 

you can lossen 

to drop down or remove.

As time passes, 

the MASK becomes 

the type with a stretchy band 

around your head or ears.

It's always there 

sometimes slipping down 

or confusing others, 

who you see & who you don't.

With LBD it goes 

down the front of your face

and remains around your neck.

Then, the MASK changes completely

and it's painted on the face;

always there, always prominent.

We had no roadmap to guide us, 

no specifics as to this disease's 

progression in behaviours.

We were constantly guessing 

as to what to do, how to act.

We had decisions to make 

to ensure we provided for 

and protected Mom -- 

from herself and often f

rom the acts of others 

who simply did not care 

to find out about Dementia. 

And, because no one 

ever counseled us or 

provided any information 

about Dementia, 

we wandered through this time 

as though in a fog 

looking for the Sun and a little light.

We took pictures and videos. 

At the time, many, to try to 

understand and explain to my son, 

who couldn't be with us, 

his Grandmother's actions 

and behaviors on any given day.

Often, especially in the beginning 

of her "last" months, she had the ability to talk 

and "fake" responses through common 

comments and even through appropriate 

responses (son:  Love you Grandma! Mom: Love you, too!) caused him to still question his grandmother's deteriorating health and the effects of the LBD.)

We took pictures to chronicle the numerous challenges we faced with Mom's Skilled Nursing Facility.

Highly recommend anyone with a loved one in a facility take advantage of the ability to chronicle/document what few people see, hear about, or realize.

Lewy Body Dementia doesn't just place masks on those whose bodies it invades, it puts masks on SNC staff and everyone who attends the men and women who live there.

(The above was originally written March 14, 2014) 

Very little has changed and this is January, 2025. 

Darkness surrounds Dementia of all types.

I continue my journey shining light as I go. 

Attending conferences, meetings online and in person.

I want to raise funding. My pockets are not deep. 

Advocating, Raising Awareness.

Encouraging others to seek counsel.

Support their walk with loved ones

Pointing the way to resources I share.

Amazed these words are being seen around the world.

Realizing we share concern for one another.

Grateful to see I am not alone and my words can give hope to others as I continue this journey I feel I've been given for a reason and a purpose.

LBD Social Signs

"Hindsight is better than foresight" is never more true than for caregiver's, family, friends of loved ones with Dementia.

Current studies cite the appearance of specific behaviours as being the "keys" to diagnosing Dementia.

Many forms cannot be specifically cited or identified until there's a post mortem examination of the brain.

It doesn't matter if someone has Alzheimer's, Lewy Body, Frontal Temporal or others, they have Dementia.

We need to recognize Dementia as the next big life challenge.

It's fatal, physically and emotionally draining.

It's destructive and stops life as we know it,

General articles and reports often become focused on the decline of mental processing citing bodily functions including standing, walking, incontinence as type or stage of the disease.

Are these really effective measures of Dementia's progression? 

Are we simply focusing on those areas we consider "more important" and use to determine the "level" of the progression and level of caregiving?

When are we going to recognize Dementia, especially Lewy Body Dementia, doesn't appear like Cancer often does with a lump you can feel or Heart Disease with a stroke? 

Lewy Body Dementia often masquarades.  As I wrote in the blog entry: Masks: Ever Changing Faces of Lewy Body Dementia , LBD is not always visible. 

People with LBD, in the beginning stages, seem to be capable of adjusting their minds, are "socially conscious", even far into progression of the disease.

They may laugh about "what they've just said", mix and match information that seems to go together to the "untrained" and "unfamiliar with the subject" ear and eye. 

Another observation I've had with Mom is how vacillating Lewy Body Dementia really is; behaviors were so unpredictable. 

It amazed me how caregivers at Mom's facility and especially the floor nurse, an LPN, believed we could affect her behavior or we could change it or Mom could choose to change it.

Unfortunately, these are all false beliefs about a real, medical condition that like Diabetes, Heart Disease or Cancer, cannot be controlled or adjusted through "willpower" or "determination".

The other night at a presentation, the message was conveyed by a gentleman about his wife and how she could somehow, if she just tried, control or affect actions like sitting up in her chair. 

It was HIS wants and needs for her to be who she's always been, not who she was becoming.

After a long period of time and a good day, when for some reason her brain neural pathways had shifted, changed or somehow let a message "slip through", my Mom might make that movement or give that response.

We, too, desperately wanted Mom to be the person we knew, we lived with, to be there, to have the ability to "return" to the person we felt comfortable around and with.

Like a trained animal, we reward the Advanced Dementia patient who shows us they "can" do something, hear something correctly, respond correctly, with a smile, words of encouragement and even with statements like "I knew you could do it if you tried hard enough".  

How grateful I am now realizing that with enough advancement of the Dementia this level of self satisfaction on the part of the visitor, the family member, may not truly register with the person struggling with Dementia.

Then, there is the other belief, and one popular today, about "the right medicine" controlling and eliminating "the disease".

You see, we're far more accepting of something we "catch" changing someone's life than we are when there is a "loss" of what is perceived to be the "self' of the individual which many believe should be able to be "personally controlled".

It may be more like eradicating Cancer. 

Controlled to some degree, possibly, perhaps, but the ability to eradicate may be more challenging or accomplished with some form of discovery that shifts development and progression.

We may find the causes of some Dementias and be able to change behaviors (smoking) or where you live (not close to where chemicals have been dumped) and therefore not get a specific Dementia (Cancer).

Unless someone determines there is one specific cause for Cancer -- possibly a genetic tendency or even lack of certain configurations/compositions -- Dementia, like Cancer, in my opinion, will be with us for many years to come.

Dementia may be seen as being prevalent in the very elderly but each passing day we're discovering, as we grow from an infant to a toddler, through adolescence and into adulthood, the vast frontier of the brain and how it is the center of the individual human universe remains an ongoing challenge.

Just recently, some have started  classifying other brain diseases, Muscular Dystrophy and Parkinson's for example, into the area of Dementias. They affect the brain and that is where Dementia works so the theory is they're related  or even one and the same.

Let's have a movement within society to be as health wary about Dementia as we are about Cancer and heart disease that affect human relationships and lifestyles.

Let's open the discussion, bring into the light, show the world we see, hear and most of all support those who are challenged with and from Dementia including the individuals and their care givers whether family or other.

YOU have the power to facilitate a change. 

Start a conversation. Volunteer to visit LTC's.

YOU hold the future in your hands.

It's your future or at least the future of someone you love.

Dr Phil: One Of Many Not Seeing Lewy Body Dementia

A few weeks ago I was home, turned on the TV and Dr Phil's program was on. I'm writing about what I saw because I can't get it out of my mind and because October is ending and we need to continue Awareness of Lewy Body Dementia. 

What caught my eye was a program on how an older woman had been "love scammed" by a man she'd never met but whose picture she'd seen, telephone conversations she'd had with him. Out of "love", she sent him money and gifts totaling over $300,000.

Her husband had died. She was lonely although she didn't say that. She had a computer and went onto Christian Mingle, a site for bringing people together. A site where the woman felt she could safely look for someone to take away the loneliness.

Unfortunately, even the best meaning sites can harbor people with anything but the best intentions and can be hiding places for individuals who take away everything of value from trusting, unsuspecting individuals.

Dr Phil was intent on reasoning with her and providing evidence of how this man was a scam artist including how the picture she believed was the man she "loved" was of another person. A picture taken from another website and NOT of the person she'd sent the money to; Dr Phil produced a picture of a man his team of researchers found to be the real person living far outside of legal reach in a country known for producing huge computer based monetary predatory scams.

To anyone capable of reasoning, it was obvious this lady was the victim of a scam. One of her last remarks:  "I love him."

My opinion?  Lewy Body Dementia. Watching her demeanor and listening to her agree to certain statements and then turn around and want to be with the man, want to be married to him -- obvious to me but not to Dr Phil the lady has neurologic problems.

I understand, Dr Phil. I really do. You're a medical professional and you cannot see. You've not been trained, advised or aware. This is your chance, Dr. Phil. You can be one of the strongest advocates LBD needs. Anyone who reads this, please forward it to Dr Phil. I can write but my voice will be only one. Ask others to send this note to Dr. Phil.

IMPORTANT:  Click through to build your knowledge and share with others to find out what we know about Lewy Body Dementiav --

MAKE EVERY MONTH, NOT JUST OCTOBER
    LEWY BODY DEMENTIA AWARENESS MONTH

http://www.lbda.org/content/10-things-you-should-know-about-lbd

We've brought Alzheimer's Awareness to the top of the medical challenges list, let's raise LEWY BODY to the same heights!

I understand Dr. Phil's challenge. Mom and I lived together for decades and I didn't see what was happening. Of course, everyone told me how capable, how competent and how "young" my mother looked. She was also social saavy and could smile, laugh and cover up, just like the lady on Dr Phil's show.

Looks and even words can cover up Lewy Body Dementia for a very long time. The slippery slope of the disease didn't progress like Alzheimer's.

Mom was taken off a drug that was supposed to aid blood movement throughout her body. It also caused her left leg to swell two to three times its regular size and for white flaky skin and sores to form and was painful. Apparently, now thinking back, this circulation was what kept Mom going and her brain "rebuilding" and without it, the disease took over and within a short span of time shut down her body functions.

Of course I wonder if we should have agreed to removing the medication. At the time all we were told was the medication was not one that should have been given for so long but I believe the Nurse Practitioner looked at Mom's more and more frequent visits to the ER and hospital as her life's end nearing and gaining momentum.

Perhaps she thought the swelling and pain was not worth what Mom was going through for the few extra weeks or months left in her life. Mom lived and loved and laughed and LBD was no longer controllable -- it was invading too many other systems, as we were told it would do.

Patients and families need professionals to know and understand LBD to work with them as they travel along this treacherous path that winds, twists and plummets into depths and darkness. Awareness lets in light; potentially provides treatments and may even provide a cure.

YOU and others hold the possibility, the potential. And all it takes is using Social Media and connectivity to remove this mask LBD hides behind.
.
Dr Phil thought if he just gave this elderly woman, this "lovely lady" who could use a computer, could sit and talk with him, who agreed to come onto his show, who appeared to be so "normal".....

THAT'S LBD.  IT'S A DISEASE OF MANY FACES. A CHAMELEON. Just when you think you might see something, the disease moves in another direction and mimics another affliction or physical problem and throws you and the Doctors onto a siderail.

LET'S KEEP MOVING IN THE RIGHT DIRECTION. Let's take over the tracks, let's put our hands on the steering wheel and let's overcome Lewy Body Dementia through AWARENESS!

The woman kept saying: "I love him".  "I want to be with him." Even when shown that the picture of the man she believed to be "the love of her life" was of someone else -- a man who'd recently lost his companion of so many years, the love of his life -- restated "I love him" meaning the person not in the picture but the person who'd taken the $300,000+.

This lovely older woman we believe is obviously in the first to mid stage of Lewy Body Dementia. She showed typical (to those of us who know LBD) non emotional reactions. Many would have gasped, cried or shown some emotion but she didn't.

Dr Phil, why didn't you see this lack of empathy, lack of ability to reason, lack of considering the depth of her loss of money?

We know -- she appeared to be so capable. It's the capacity that's gone or diminished to the extent the values and reasoning are greatly diminished or gone.

Reaction to being on TV with a "personality"?  We don't think so. The woman didn't appear to be controlling her emotions, she seemed to have lost their control along with the ability to reason effectively.

The woman kept stating how she wanted to be with him but she also mimicked Dr Phil when he found out she'd told the man she was going on his show and said "guess he didn't want me to come on your show". But she didn't seem to place a value on it; it was a statement without feeling. It was appropriate behavior/response but there was nothing behind the statement, no real comprehension for the meaning of what was being said.

Mimicking appears to be a part of the ability of the person with early/mid LBD but it's devoid of substance or value. My observation.

Her daughter joined her on the show. She said her brother was very angry about what the mother had done and wasn't speaking to either of them. The daughter did not intervene, apparently, and probably wouldn't have accomplished anything because like Dr Phil and like so many in our life -- the belief is the person is "perfectly fine".

This older woman used the computer. She lived in a facility. When she couldn't pay, she was asked to leave. She now lives with a member of her family, a brother or sister. What and who will ensure she doesn't go back to this man or someone else and continue to give away each month's Social Security or other benefits and income she has?

End of show. End of concern?  Just like the State of Missouri, our bank, our church and so many others, people don't see what's right in front of their eyes. Some don't want to get "involved" and others, like the State, get involved but aren't adequately informed or trained or aware of what Lewy Body Dementia is and how it presents itself.

Dr Phil advises on his website to get a Power of Attorney. Not good enough. That's only as good as the paper on which it's written and for the LBD person, who can be influenced by others to make choices and especially to entrust someone who "cares" about them as Julia did my Mom, they can remove it as easily as they gave it.

So what's the answer?  Dr Phil has the ability to bring to light this devastating disease that unlike Cancer and Heart Disease doesn't just directly attack the individual, it attacks the family, the community and society. Yes, the big "C" and "H" also affect more than the person with the challenge but today we have tests, usually there are many warning signs  -- we don't even have a clue as to what causes LBD, when LBD begins, how long it lasts, what the significant passages are from one stage to the next --if there are definitive stages, even.

Dr Phil hear our cry:  Lewy Body Dementia is there, has been there for decades and you are among those who can best bring to light this devastating disease. Dementia in general needs more light and publicity. It's not just happening to the older population; mental processing disfunction or disability can be seen in many ways in all ages from the very young to the very old. It's probably the most devastating and most prevalent disease we have as humans -- if we start grouping together and placing these afflictions and affectations into the wide description of Dementia. 

Those of you who read this, send texts, emails, review the program for yourself; it aired the last week in September. Visit www.lbda.org.

Again, visit:  http://www.lbda.org/content/10-things-you-should-know-about-lbd

OCTOBER IS LEWY BODY AWARENESS MONTH. 
TALK ABOUT LBD. READ ABOUT LBD.
USE YOUR SOCIAL CONNECTIONS TO GET OTHERS INVOLVED.

Some celebrities including Whoppi Goldberg have joined the ranks, it's time for many more. And, let her know, too, through social media, how important it is for her to speak up more on a daily basis for LBD.

BRING LEWY OUT OF HIDING --  NOW!

It's In The Giving We Receive

I did it. It was colder than usual but at least the rain stayed away so the Garage Sale went on as planned.


Having been on the "bargain hunting" end looking for those couple of dollar or less items I was now on the end of parting with things I knew were worth far more for little to nothing just to get them out and on their way.


True, I'm fortunately not forced to sell things and at least so far not having to walk away and leave behind everything but the clothes on my back. Been there, done that. Not my primary decision. Understand why now and did then but still hurt greatly to leave behind so little in today's terms but so much in my young life.


The best part of the Garage Sale?  A chance encounter with a few people I feel gave me the opportunity to continue to give.


Whatever I've had in life, if someone needed or appeared to need, my hand is ready to help, to offer whatever, to share what I have.


There was an older woman who found a blue sweater of my husband's I'd put out for $2. She was soft spoken and when I went to put the sweater into a bag, I noticed and she noticed there were moth holes. I told her I couldn't sell it to her like that and she said she'd pay $1 for it. I told her to just take it, please. She then said she'd lost her husband just forty days ago.... FORTY DAYS....how well I remember even though for me it will soon be four years.


She looked close to my age but could have been somewhat older. We were sisters in loss, sisters in life, yet have no idea who either of us really is as we both continue to redefine who we are, where we are and what we will do with the days and nights remaining before someone else starts our journey because we, too, have passed from this life.


The Mom who drove up as I was closing and putting away so many things that didn't appeal to someone, didn't find a "new home". She'd spotted a Fisher Price dollhouse and asked how much it was. I told her and could tell it was beyond what she felt she could pay.


When she'd gotten out of the van she drove, a young man and a girl came with her. She said her one daughter in the car saw it and she'd really like to get it for her but what I was asking was more than she could do. We talked more and she mentioned she had five children. Long story short, my heart saw her heart and I told her to take the doll house and furnishings, a chair and a doll stroller and even a couple of other small toys for less than what I'd asked. Chance acquaintance. Fortunate meeting. Making her day made mine.


Neighbors I'd not met before came by. Some walking dogs and some just walking. One couple from just down the street but whom I'd not met stopped to talk and then they were both drawn to an old display case. My father in law had found it and the paper still inside was dated before World War II started. 


A very heavy piece. I'd said "someday" I'll do something with it. Years passed. Someday didn't come. Daughter didn't want it. Sons have shown no interest in those "old things" ....so.... time for a new home, a family, a place where it would be cherished until they too decided the time had come and passed it along to another family to cherish and use and tell stories about how it had come to them.


It's not really a sale, it's a passing on. And, as for me, I truly give things away to people who touch my soul in passing, people who are kindred spirits. But let them be avaricious or appear to disdain my treasures and I'm tempted to not  sell to them at any price and very nicely say, no, I'm sorry, I think $2 (or $5 or whatever) is a reasonable price. And then smile as they walk away knowing someone will come by, someone who's meant to have that piece, that item.


I was exhausted by the end of the day. Daughter and I were up at 4 AM to lug, tug, tote and drag so much I thought we'd cleared out the entire house. Only to look around and see, you guessed it, a beginning and a clear vision of yet another garage sale -- maybe the following weekend, weather permitting. 


It was days on end of working, assembling, categorizing, pricing and wondering where so much came from since we'd had a fire and lost almost everything when we were married seven years.  Amazing what life drops in your lap from friends and relatives over the years!


So, I'm doing it again. Going through more "stuff".  Finding the courage to let go, to move ahead, to move on and to share with others and bring a little joy.


A simple, little story, for them to pass on. A memory of how that "garage sale item" from one Saturday in October in 2014 came into their lives when they met this woman who over four decades ago began a new chapter in her life as "the couple", became "the family" and then the "multigenerational family" -- who accumulated all those things by starting a life together as husband and wife.


It was a great day to make new memories and to cherish the old memories. He was with me, my husband; and so was she, my mom. I didn't give them away and I didn't give me away or our lives together. I reached out and touched other lives, found ways what we had could be shared, given and entrusted to others who would care for and about what was time to say goodbye to.


It's in the giving we receive.

Lessons Learned from Living With LBD & Being the Survivors

Daughter and I have one another. For this, I give thanks every day.


We've kept our home, a constant struggle economically in these most difficult times. Not working for as long as I did caring for Mom and my husband took tremendous tolls on what we'd saved and what we had.


Learning that choices made along the way of life may seem for the best at the time, may remain positive as the years pass while still causing great upset and difficulties.


Understanding some may never understand the value of what we chose to do as having the significant value we see.


The work I've found and daughter's found, often just in the last moments when we were "going down" for what we thought was the last time.


Struggling isn't always a positive action. It's never "fun" to wonder where and when the basics of life will be there or how you can make it to and through the next challenge waiting around the corner or behind the next turn.


Been there. Done that. Didn't want to again. Not my choice. Realizing I was too long away to truly understand. Down, but not for the count. A hand always reaching out from unexpected places and people, holding onto ours sometimes for a long time and sometimes for short periods but always there when we need it even if not the way we felt we needed.


Knowing I would do it again. All of it. For each of them.


Learning about people and especially family members and some friends. In the beginning they're there but then they go away. It's all right; it's difficult for them. They don't know how to act, what to say and certainly not who we really are. Their lives, too, will change in many ways as they travel life's road.


Survival is more than money.  Caring, sharing, discovering inner strengths and outer resources.


Taking even more pleasure in daily life "freebies": beautiful sunrises and sunsets; amazing weather; food, of any kind; finding extra change and knowing you can get gas to go to visit Mom yet another time before she leaves this life.


Anger comes along for the ride, too.  Frustration tags along. Disbelief in systems and people who should and could see, hear and speak up, IF ONLY .....


Realization life is personal and private while being up for grabs in the social media world we live in.


Despite one son's claims, I do have value, I have succeeded and I will continue...


Sadness for those who cannot or will not set their "egos" aside and see others needs and dreams.


Joy despite sorrow. Laughter amid the tears. Faith continuously abiding. Love eternal and beyond life as we know it. Hope for tomorrow here and tomorrow there with both sides giving Life.


These are some of my daily lessons and I know there is more to learn.

Seven Websites For Families & Individuals

Last night my daughter and I attended a program sponsored by the local Alzheimer's Association and the not for profit company that managed Mom's care in the Skilled Nursing Unit where she lived for a little over two years and where she passed through this life.

Mixed feelings about the program in general and others I've attended through this company and the association.

The Marketing Director of the group of senior service providers mentioned this was the sixth in a series of presentations. We've attended about half. The take away is a grain of information but it keeps us informed as to the level of capability of both these groups and also to the pulse of the people faced with the challenges of growing older and those caring for a Senior.

Here's what we would teach individuals and families:

Lesson #1
All Dementias are not the same and they do not progress the same.

Here's one of many resources I've read for guidance. It's not totally up to date esp regarding Lewy Body Dementia as the citations do not report the rapid growth of the discovery of LBD in our aging population as our abilities to diagnose the varying forms of Dementia evolves:  http://www.helpguide.org/elder/alzheimers_dementias_types.htm

Lesson #2
Even though there are is no exact way to distinguish among some Dementias (esp Frontal Temporal, Alzheimer's and Lewy Body Dementia), behaviours are based on brain function or dysfuntion and that is what should be the focus of providing care.  Suggest you take a tour of the brain on the Alzheimer's Association website: http://www.alz.org/alzheimers_disease_4719.asp

Lesson #3
Those who are challenged by Dementia are human beings and deserve respect, care, consideration and understanding first and foremost.

Here's a link I just discovered from outside the United States, in English, that many facilities should read and follow more closely:  http://www.dementiasa.org/advicesheets/english/Understanding%20and%20Respecting%20the%20person%20with%20dementia%20ENGLISH%20C.pdf 

Dementia is a worldwide challenge and as more countries develop and populations age, it becomes an international challenge for human rights.

Lesson #4
Know your rights in a Nursing Facility. Here's a website I just "stumbled across" I wish I'd found prior to my Mom's death and prior to her entering the first facility.

Knowledge is power and this paper is worth reading all the way through, getting a copy for reference and ensuring you pass along this important information:
http://www.nsclc.org/wp-content/uploads/2011/02/20-Common-Problems-Nov-2010-Final.pdf


Lesson #5
The presenter of last night's program documented his wife's advancing Dementia. We believe you should also document any challenges or problems you witness or your loved one talks about or you observe.

Take notes, take pictures and take videos of your loved one who lives in a facility. If you see something happening that's questionable, document it. You may not have the right to photograph or video another resident but you can make notes including the name of the person whom you think has violated the rights of the resident, caused possible harm to their person or caused any type of neglect or abusive situation.

Review your loved one's rights in your State's Rules and Regulations for Skilled Nursing Facilities and if they have them, for Assisted Living and even Independent Living.

Suggest you start here if you live in the United States: 

http://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/NHs.htmlifhttp://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/NHs.html 

Lesson 6:
Every Nursing Center should have both a Resident's Council AND a Family Council.  Start a Family Council if there isn't one and learn your rights as a member at this website and the one above (which has a section on Family Councils):  http://www.theconsumervoice.org/familymember/family-council center#Family_Council_Rights_and_Federal_Laws Regulations

Added Comment 4/08:  The Nursing Home Reform Law of 1987 provides both resident councils and family councils become established in "Nursing Homes", places we now refer to as Skilled Nursing Facilities (SNF's) or Long Term Care Facilities. Here's a link through another good general website resource:
http://www.theconsumervoice.org/advocate/issueindex/archivedissues/obra

CHECK IT OUT:  In Missouri, there is NO mention of a Family Council in the Rules and Regulations for Long Term Care/Skilled Nursing Facilities BUT there is a mention of Resident's Councils.  How about your State?  Care to share by letting us know what States mandate establishment or facilities that do have these councils?

Website: NonPartisan Info Social Insurance including Long Term Care and Medicare

I'm constantly surfing the web and continuously surprised at what I find. Found this site that appears to be nonpartisan and not for profit and covers information on Social Security, Medicare, Worker's Compensation and Disability, Unemployment Insurance and Long Term Care.


Of particular interest to us are the areas of Medicare and Long Term Care as it applies to our current and future possible experiences but all these areas contain great information you'd have to go to several sites to retrieve in one convenient location. Published articles and citations including providers of support from various foundations in just a basic overview of the site leads me to believe this is a "gem" of a site for anyone who really wants in depth information, great overviews and insights and a constant resource for keeping up to date on what's happening in our society in areas we're all facing.


Admittedly, I've not explored this new site in depth I've connected at the end of this entry but from first impression see information that appears to be nonpartisan and nonbiased.


Also found selections very prevalent to my latest experience "volunteering" to participate in a study by a local Medical Facility/Educational Facility designed to "open discussion" or raise it to a higher level between the "older generation" in a family and the "children".  It's the article on "self determination" you can access through


Second admission, I'm not exactly "thrilled" with the questionnaires I've been receiving nor with the way in which the program is progressing. Some questions I consider too personal and would welcome answering them if they weren't "me" specific but rather asked if I "believed" this or that was necessary, needed or wanted.


BUT, it has opened additional conversations about "life plans" among the three of us who I feel, at this time, I want involved in "making decisions and choices" especially when I no longer have that ability.


Witnessing how my Mom, with Lewy Body Dementia, could easily change, almost from day to day, her "choices" about who should/could make decisions or who she would trust -- hence our major problem with Julia and the woman's ability to use Undue Influence and get her hands on cash in our home -- I'm concerned about that possibility occurring again and causing hardships especially for my daughter as it did for me, as my Mom's only daughter.


So, I continue to search, to research, to plan, to try to understand and to encourage others to do the same.


If we want to have "personal choice" and "personal determination" we must be proactive and start early in life, even earlier than I'm starting, to understand the laws, the possible changes we can effect and the affects of studies and relationships. If we're fortunate to move forward into "stages" of life, we should understand the role we can play in self determination and effective directives that will, even with significant challenges, continue to provide a safety net surrounding the individual -- if that is what we believe we have, "the right to self determination".


I notice many readers of this blog from countries that may not provide this "right" and look forward to the day when you can join in this decision.  I see others who live in countries we've seen as "more progressive" in providing choices and values for aging far beyond what we currently experience in the United States.


Conversations are welcome. We're still learning about blogs and how to make them more interactive and responsive. Now that our lives have changed to hopefully provide a little more "personal" time for "personal choices", we hope to progress with this blog to more interaction, more inclusion of resources and build greater awareness of not only Lewy Body Dementia but recognizing the choices we have when they're available and known.


In Mom's memory, we've determined to share our experiences with her Lewy Body Dementia, references to reliable and lesser known resources, like this website connection, and advisories on areas of life we seldom think about until we're in dire need of information.


Join us for A Continuing Celebration of Life journey.


Here's the site: http://www.nasi.org/  and here's a section I found particularly helpful regarding considerations most of us will have to make regarding care for ourselves or a loved one  http://www.nasi.org/research/long-term-care 

 

It's Friday and Mom's Passing Comes To Mind ... Again

Called the funeral parlor yesterday. Life got in the way and I'd not called back to re-request Mom's death certificate. Or was it having that final piece of paper in hand meant the passing of both my husband and my mother were factual. No denial. No setting aside. No pausing and thinking: "Have to go to the hospital" for him and "Have to go to the Nursing Home" for her.


Reality has set in. It's not something I dwell on. But as anyone who's lost a loved one will tell you, it's not a simple matter of "here today, gone tomorrow" acceptance and moving on almost as though nothing really happened.


It's a major life event and in my eyes and mind having gone through the death of one absent parent, my father, due to divorce and not seeing him for a long time, I believe the closer the relationship is, the harder the adjustment (if we call it that) is and the more it affects everything we do.


I'm strong, I tell myself. I'm a fighter. True. I've survived a great deal in life and am still in survival mode. But that was usually with one or both of these people in my life and even if I was upset with them, angry about something, disappointed or in any way feeling that relationship wasn't what I wanted or needed at the time, there was still a chance, THE chance, to go back, reconsider, restart, rewind -- with one or both of them. No more.


Mom passed on a Friday afternoon. I'm not sure I remember exactly what time. We'd stayed with her, in her room at "the facility", for two nights and were believing we faced the third and then saw great changes and a definite progression that meant Mom would soon be leaving this life.


The staff had finally moved her roommate, who was sleeping most of the time but still "present" and when awake often verbally and physically active and sometimes very negative and somewhat abusive to attendants. We made do with sleeping, daughter on a makeshift pallet on the floor and myself folding into the permanently reclining lift chair that had decided to quit working about a week before Mom passed.


Grateful not to be living through that time, again.


Looking back, thankful it was in January and not in March; Mom loved the Spring and looking forward to the flowers we had in the yard that would start blooming now and then climax in July with the bursting forth of the dozens of varied day lily plants of all sizes, shapes and colors we'd planted decades ago.


When she went into the facility, I made it a point to take her blooming plants when none were blooming outside and cuttings from the flowers we had blooming in the yard.


Even when she passed through the Lewy Body Dementia "stages" of not recognizing me or others, she still responded positively to the sight and smell of flowers. Now taking them to her is a major trip as her final wish was to be buried in a small cemetery in a town where she spent much of her childhood and close to the actual town where she was born. But I remember both Mom and my husband when the flowers bloom, when the snow comes and when so many other life joys return to remind me of past love and family.


Memories hurt. Memories heal. Time hurts and it heals. It's approaching three months for Mom and it's been a little over three years for my husband.  Mom said when he passed, "It should have been me." She was so much more aware then even though she was deep into the progression of Lewy Body Dementia. That roller coaster ride was in the beginning stages although as we discovered, the LBD was not in the early stages.


Each stage for Mom was very lengthy and the really visual and continual and non ability to return "on course" characteristic of what we did see and know as LBD and remember pre LBD hit a relatively quick and fast decline -- about two weeks for the real physical/mental total downhill journey without any return to a previous level.


Sometimes I feel those who discover LBD earlier are more fortunate and sometimes I feel they suffer even more knowing what lies ahead.


Would I want to know if I had LBD?  If it could be diagnosed when I was truly competent, I think I would. I'm far away from the time we think Mom started her actual battle with the disease but each day does move me closer in that direction. Lewy Body Dementia causes so much mistrust on the part of the person with the disease. That alone is frightening when thinking about the "self" and the possibility of having LBD. 


Trust is a basis of my life with my daughter; it was my Mom's basis of life as well. Will I follow in Mom's shoes or will I succumb to something else?  Is there ever a "good way" to pass through this life?  My husband thought his father was blessed; Dad died in his sleep. But what do we really know about the end......

October: A Month To Remember: Requesting Maria Schriver To Report On LBD

Please forward this entry to as many people as possible. We all know the power of the Internet. Please use this power to gain recognition for Lewy Body Dementia!

This past week NBC's Today Show focused on Alzheimer's and devoted four days to special presentations on the disease.

Maria Schriver was a main presenter. As a well known personality, born into a highly recognizable family and having experienced coping with Alzheimer's, she is in a position of high visibility and her achievements in media can greatly benefit awareness of Dementia as THE disease, not just Alzheimer's. 

Dementia is like Cancer once was: Often not talked about, very little known about, consisting of varying types with some having greater advocacy and some types thought of as more "devastating".

The Brain is the New Frontier.  Before the CT and MRI, we had no means to see inside the body or the brain. Even now, age and related medical challenges may deter the ability to gain information in these ways.

Misdiagnosis of the type of Dementia and even greater numbers of individuals with undiagnosed Dementia are causes for great concern.

American Society must change its viewpoint of mental challenges, Dementia included. More Geriatric specialists are greatly needed and not just Doctors; Nurse Practitioners and RN's with this specialty are greatly needed. More in depth training of CNA's and those providing the basic quality of life daily care procedures is critical; they are the ones who often have first exposure to changing/changed or shifts, in physical and/or mental abilities.

Long Term Care Facilities with medical staff including Doctors aligned with the facilities must be required to evaluate accurately and thoroughly Senior medical conditions including the different forms of Dementia.

Continuing and ongoing education requirements for all types of Dementia should be more in depth, more current and inclusive within the medical community.

More educational opportunities for family members and caregivers of residents within Long Term Care facilities concerning Dementia and other medical and social challenges faced by residents should be required.

Unlike Cancer or Heart Disease, Brain Diseases affect an area of our body most people believe should be "controllable" and when not, something to be thankful for not having or seeking a pharmacological way to "handle and control" the "problem".

We believe knowledge is power.

Prominent people like Ms Schriver raising their voices for Dementia as a collective disease of many types, all requiring understanding and medical action, is critical to managing this devastating challenge undermining the quality of life of those suffering with the disease of Dementia.

Dementia breaks apart families, many of whom have members who simply do not understand the variations and challenges of different types of the disease.

Few people understand the differences between Alzheimer's and Lewy Body Dementia and how LBD can radically fluctuate; LBD has often been compared to a roller coaster ride.

Make October A Month To Remember

Lewy Body Dementia

Affects More Than 1.3 million families

 

With accurate diagnosis and reevaluation of those diagnosed with Alzheimer's, we believe LBD numbers of affected individuals and families will grow greatly.

 

Visit http://www.lbda.org/ to learn more

 

As a beginning, Ms Schriver, my daughter and I  hope you choose to continue to educate everyone through the power of public media this October with more specialized NBC programming on Lewy Body Dementia.