LBD Changes The Brain

Mom's LBD reminded me of an experimental music presentation I once heard that included many dissonant chords my ear and brain had difficulty accepting.

There's an underlying relationship of notes; the arrangement, the sequence and even the sounds themselves can be sequential and logical or varied and confusing. 

Having Aphasia also makes carrying on a conversation with Mom both interesting and frustrating. 

Mom inserts sounds and gives them various meanings. 

"Haska" is one of her favorite words. 

Just when we think we understand what she's using it to describe (a specific place she's going to; a hallucinatory place she's developed in her life) she may use it in another way.

Ha Ha (not a laugh, a type of "membership" in a Haska)

Wa Wa (membership in another group, not a Haska and apparently quite contrary to the Ha Ha group). 

Fascinating when you realize there are "values" associated to words that seem random or not "actual".

They have meaning to the speaker and theres's still a level of ability to set personal values even with adjusted words.

She may use the same sound combinations in a sentence where they have another meaning and we're left guessing what new identity they've taken on. 

There was never a "dull moment". 

I smile and even laugh today; back then it was confusing and even upsetting to listen and watch; we did not understand this was her brain trying to express, sort and communicate.

Now, I realize it was a sign of the Dementia.

Words were inserted into sentences as though they belong in a specific place and have a specific meaning. It's not random; it's as though the brain is simply substituting.

I often read about other LBD people who've been highly productive, intelligent and involved in life and wonder if having an active and capable brain helps to keep Lewy Body Dementia at bay causing the long roller coaster ride until it finally totally engulfs and destroys albeit often in the very last breaths of life.

The mobile phone we had for her became unusable.

Those who live long distances from someone with Dementia, who do not have personal interaction, often blame those who caregive of many negative actions.

The phone was small. The coordination needed to hold it, trying to locate the button to "connect" or "disconnect" was gone.

My oldest son claimed we "took away" his Grandmother's phone and wouldn't let him talk with her. Far from the truth.

Time passed and even if she was in the room and the room phone was allowed to ring many times, she didn't answer. 

When daughter or I called, we thought she wasn't in her room or perhaps was too far away, in the bathroom, for example.

When you love someone, you sometimes look past what's in plain sight including mental, emotional and physical changes.

For a period of time Mom could speak on the room phone.

Watching and listening, hearing and more fully noticing various progressions or lessening of skillsets, I believe she was progressing in deterioration/loss of various processing skillsets

She'd often pick up the phone and didn't know which end to speak into and which end for her ear. 

Mom was still good at "covering up" and had the ability to laugh at herself; she sometimes realized the phone was wrong side up for listening/speaking. Then it progressed to where she did not have this recognition.

Mom never ceased to amaze me, though. I'd spend time with her, notice what I felt were changes, think they're now a fixed behavior and then on another visit, not necessarily the next, that change would not be evident.

This was one of the "masks" I've talked about with Lewy Body Dementia; off and on, sometimes fixed sometimes loose, never knowing who was really there.

Mom seemed to stare a lot more than she used to. 

Yes, she had sight challenges and the hallucinations made that condition even more challenging. 

Or, could medications Mom was receiving produce these "side effects" and we didn't realize?

She fixed her gaze more often and seemed to be staring off into space without appearing to be thinking or focusing on anything, trance like. Dementia or medications?

We've all "drifted off" from time to time on a thought or concern This is how Lewy Body Dementia can affect in later stages and so we assigned this for years to LBD when maybe we were wrong, it could have been the "Meds".

To our knowledge, she wasn't on any "drugs" that would cause this behavior and I've noticed this in other people with advanced Dementia. 

We made many "missteps". Daughter and I are remedying as we move towards "unknown" parts of aging and what is holds.

Mom remembered certain actions needed to be taken but while in the process of doing the action would reverse her actions and undo what she'd done. 

She usually remembered she's supposed to lock her wheelchair before attempting to transfer to her chair (she does this herself even though she should have assistance with the transfer).  

She'll lock the brakes, move her hands and then believe she's not locked them and unlocks them. I'm sure others afflicted with LBD have similar reactions and that's why LBD can be so dangerous and so many falls.

Hindsight is always so much clearer. Advancements in the short time since I started writing this Blog, in the field of Neurology & Lewy Body Dementia, have moved light years ahead. 

Today . . .  
I'm really happy I somehow gathered the courage to "go public" with our challenges and share the problems and the possibilities we uncovered along the way.

I look even farther forward to the additional ways I can add to more individual walks along the paths we maneuvered so precariously.

Mom loved to read and she was a life long learner. I know she would be pleased to see what we've accomplished and how we're working to resolve problems that still exist and challenges we continue to witness and encounter.

Life is a process, it's full of surprises, Mom would say. 

The best surprise: finding others who share your journey.

Originally Published December 29, 2014. 

Mom's "100thyear". She passed the prior January.    

                                                                                                                                      Originally started September 7, 2013. 

Mom was still very much with us. 

Look Behind The Curtain

Let's take a look behind the "marketing" and "tour presentation" statements for many Long Term Care facilities. 

First area of "inspection" -- DINING.

Dining As It Appears:  Walking in you'll see tables, often a TV, maybe it's a combination "community room" used for visiting musical groups or for other uses. You're told how residents are "encouraged" to come to the dining room. How the staff has been trained in "white glove individual service" and it's like dining in a nice restaurant. 

You're told, if for some reason they can't get to the dining room or would prefer to "dine in their room", this is simply accomplished by the resident calling ahead and ordering what they'd like.  And, of course, they can do that for the dining room, as well.

Picture if you will someone with poor eyesight given a list with items on it about the size of this type. The list is in columns but isn't organized, just randomly posted. 

And on any given day certain items "may not be available" so the resident, who has difficulty making decisions due to advancing Dementia or just indecisive, now has to make another choice. 

REALITY DINING:  This mulitpurpose room may be used several times a quarter for meetings and other events and closed to residents. Residents must dine in their dining room on their floor or in their room. This can be for one meal: breakfast, lunch or dinner OR it can be for an entire day.

Dining on the resident's living floor is in a small area where the residents who cannot travel the distance or do not have the mental or physical abilities to sit with others due to either behaviour or limitations are regularly dining. No conversation possible.

Sights and sounds that to the more capable person are not just distracting, they're disturbing; you get to see what it's like, how you'll be, where you're headed. That's demoralizing and can cause the "moods" to be constantly down that are regularly measured as mandated by Federal and State Rules and Regulations in LTC Facilities.

Dining begins and service ends at a set time. If you don't make it, you may have to settle for whatever might happen to be in the refrigerator on the floor and due to "cutbacks" that's possibly now limited to ice cream, bologna sandwiches and maybe some low fat milk.

Why wouldn't you make it to dining on time? Multiple reasons.
Your roommate is in the bathroom and you need to wait until she/he finishes because there are no other bathrooms set up to accommodate your need to have a bar to transfer and enough space for your wheelchair to be moved behind you safely. 

You can roll yourself in your wheelchair but you can't get out of your bed or chair without assistance and staff shortages mean you wait a minimum of half an hour or longer for help that should have taken just a few minutes.

Or many other challenges faced every day by residents trying to adjust and adhere to schedules while they cope with limitations and deterioration.

Table Service isn't just one to one, it's one at a time and each person is asked what they want but no "written orders" are taken so the server heads back to "adjust" the order and wait to have it ladled out. She/he then walks slowly over to the person and delivers it and moves on. 

Fast food we may not want it to be but faster service would be easier on the residents who often wait over an hour before their turn to be served.

Assistance with anything in the dining room? The lady who broke her back has to ask repeatedly for her dish ring so it won't move while she works to feed herself. IF she wants assistance, she must be fed at the dining area on her residential floor, no accommodation in this dining room. 

Guess it doesn't "look good" to those who might be visiting. Besides, they only have so many "allocated" feeders so they'd have to pay an additional cost. You can always provide it yourself, of course, anything that you'd "like" to have, and pay independently.

REALITY IN-ROOM DINING:  Served from what's been brought to the upstairs dining room you may be served first or last. It's just like downstairs: one person scoops out for one resident at a time. Snails move faster. Then, one staff member takes one dish to one person either in their room or in the upstairs dining area.

Now, all this time, upstairs and down, residents are really lucky if that particular meal someone is kind enough to ask them if they'd like something to drink. They often wait from the time the arrive or are brought into a dining area for service to begin and for their "turn" to finally come to get some form of drink or food -- and seldom are they given within a short period of time of one another.

Room trays are assembled from a "ticket" that's been put together and sometimes the food is "preassembled" and usually very cold and very "tough". It's usually been sitting (goodness knows for how long and where) since someone assembled it downstairs to go up with the carts. It often arrives as long as thirty minutes after everyone's been assembled in the dining area by staff members. 

Many of those who "dine" upstairs on the floor where they live have been started to be assembled at least an hour before dinner's officially scheduled. Some have been sitting in the area almost all day long. Maybe they've been checked on and maybe not; maybe they've been changed, maybe not. Who keeps track? 

DINING ON SPECIAL OCCASIONS.  The facility posts an "Invitation" for friends and family to "join the festivities" and lists a menu with a set cost per person. This Invitation is limited to being posted in one of the two elevators so if you happen not to get that elevator, you don't know about this "opportunity".

Added staff appears for service. There's even someone acting as maitre'de to escort "families" to their seats. Tables are set up specifically for "reservations". It's not at all like everyday but visitors see and believe it is.

Missing are tables or areas for "singles" or "groups" of residents who don't have someone joining them for this "special meal" They're expected to "eat upstairs" -- either in their room or with the people who need supervision and assistance. 

Happy Holiday!

As mentioned about this past Christmas dining, name tent tags on the tables was a nice choice as were the tablecloths but adding "and family" and not having tent tags for residents who wanted to eat in the dining room but did not have a "place at a table" was upsetting.

QUALITY OF FOOD.  Prepared ahead most food is cold to lukewarm. Sometimes "water bath" serving containers are used, sometimes not. Everything is prepared alike; few seasonings and very little salt. But they're heavy on the sugar in the sweets!

Variety is limited. One choice of entree per meal. One set "menu" per meal. You can try to substitute but if it's "forgotten", too bad. And, you have to make sure you call at least two hours before the scheduled time which means you need to call by 5:30 AM for breakfast; kitchen staff isn't around to "take your order" the evening before; the person who does that is gone for the day before service begins.

COVERS TO PROTECT CLOTHING. Need a covering for your clothing because your arthritic hands have difficulty balancing the regular fork and spoon? Even though you use one every meal, no one thinks to put it at "your place". Every day your name is put at a certain place and although you've eaten there forever, no one thinks to provide this benefit for your arrival.

Covers have a nice pocket in the front to catch dropped food but they have a snap in the back even someone with capable hands and good eyes has difficulty closing. I tried. It took several attempts. Ladies with any hair length are greatly inconvenienced because they can't hold up their hair while trying to manipulate and place those small snap and closure in just the right configuration.

DISHES AND UTENSILS.If you want to use "special utensils", there has to be a "special order" for those. So, you struggle to balance food in a small bowled spoon with a very narrow handle you can barely hold onto. Grasping a slender handle on the fork they place in front of you is difficult but it's even more frustrating because you constantly drop food as you try, unsuccessfully, to balance it from the plate to your mouth.

Glasses!  Who in the world provides glasses filled to the top with liquid and expects a Senior to be able to ensure it gets to their lips and down their throat without spilling half the contents?  And a glass so small it's barely capable of holding 3 or 4 good sized swallows.

STRAWS. Ask for one and it's like you're asking for something that hasn't been invented yet. Do they have "special cups" similar to "tippy cups". YES.  What does it take to get one? Waiting half your meal and asking half a dozen times or more. 

Again, there is no consideration, no "remembering" what a "dining guest" likes/needs. That would be REAL service along with getting food that isn't dried out and cold, of course.

A PLACE FOR EVERYONE AND EVERYONE IN THEIR PLACE.  Yes, you can ask to sit with "someone" or in a "group" of people. But if that group isn't hospitable, you're soon looking for another place to sit. If you don't "ask", you're "assigned" and that means it's really difficult and sometimes impossible to get staff to move you or for you to move to another location.So, tables are set with "name signs" and you sit there every meal with the same people, hospitable or not.

It's not dining with whom you want and choices made each meal to dine with this person or that one.

TV IS ON WHETHER YOU WANT IT OR NOT.  Conversation? Depends on where you're seated. Close to the TV and you can barely hear yourself think but since some residents want it on, it's on. Sometimes I think it's more for the staff, especially in the "floor dining areas" so they can watch their "favorite programs" while serving the evening meal and feeding residents who take a longer time to eat.

AND TO THINK. THIS IS "DINING". THIS IS A "PLEASUREABLE EXPERIENCE" and as such is a "highlight" of your tour of the facility.

For many it's one of the few times they're social. Some days there are no activities. No events. And they don't have the strength in their aging bodies to make it up and down, up and down, up and down, more than three times in any one day.

ASSISTANCE?  At times. But because the facility is almost always short staffed, it's everyone for themselves and so many start down to the lower level dining room far in advance just to ensure they get there on time. 

Of course, those who have "challenges" in weak bladders truly have a choice -- stay on the floor and eat with those who provide no chance for conversation or socialization or take a chance they'll have an accident because there are no restrooms past their room that can accommodate their needs for entry and exit.

MOM never wanted to go into a "facility". She made me promise I wouldn't send her until she had no idea where she was going or where she was.

Well, Julia, the woman who came into our life and used Undue Influence on Mom helping her to "disconnect" from our family didn't have to "honor your mother" as I felt obliged..

Julia saw Mom's declining ability to reason as a trained Registered Nurse AND as someone who specialized in providing care giving for men and women with Dementia. She knew Mom's mental capabilities had diminished far beyond what we realized or saw. 

Julia succeeded in getting Mom and the State of Missouri Department of Health and Senior Services to "consider" and to "believe just enough" to put into action several steps that took Mom from the home and family she loved out to experience the raw, rough and hardship world of living permanently in Long Term Care.

BE EVER VIGILANT, FAMILIES.  Be ever vigilant Seniors. It may eventually be necessary as Mom and I always talked about but going before "your real time" is going where there are too few rules and regulations and too little enforcement to successfully ensure the safety and well being of one of our most precious gifts, long life.

Life Lessons Learned

Some say you can adjust, make the best of a life challenge.                                   It's like falling into the "rabbit hole" of Alice in Wonderland.

You try your best, do what you can and often "go with the flow".

Here's what I wrote as we struggled just to move day to day:

Daughter and I are both trying to find full time jobs.

We're both working part time.

Can't afford to work on Commission basis.

Need consistent income to overcome and just pay bills.

With full time jobs, we would have some security.

We've found "gigs"--always waiting for the next one "to appear".

One day out of many. We needed desperately to be different.

We both had the day off. This was unusual. 

We had enough in our "budget" for the week to use the Gas                                             we had in the tank and replace it. 

Decided to "splurge" and take a chance,                                                                         to continue to survive, move forward.

We, separately and together, felt the need to feel close.                                           That meant traveling to Mom's gravesite.

To gain strength from being "near" as we did for years.

A journey of more than 100 miles round trip,                                                         providing some peace -- now that we've returned.

It's been difficult at my work lately. 

Challenges I'm not sure I want to continue to endure.

With no other opportunities, I keep believing in tomorrow.

Like many others, we move from day to day.

We know this time provides the basis                                                                           for our keeping a roof over our heads                                                                     and food on the table.

I know I can't walk away until I find another. 

This is the typical "world of work" and I am only one of many.

There's one "challenge" I face many do not -- 

Not so easy to find work "at my age".

Mom's life was her example to me                                                                                    of personal strength and caring beyond yourself. 

She taught me to believe in my "self'. 

I'd practiced that lesson many times over when she was around.

A Higher Calling

You came into this world needing to be fed, changed, given care, concern and consideration by those around you.

Then you became less dependent and more defiant.

Assets and Liabilities depending on being born male or female.

Some see each as life generating, one life limiting.

Generations past heralded the birth of a boy as continuation of a family name, the passing of property.

Women just a vessel through which this goal became?

Some give more power to those who carry the "seed" while others believe it's not in sowing but the cultivating we achieve.

If procreation is the only measurement of worth what's to be done when a woman fails to perform?

Generations of women lived as subservient first to fathers, then to husbands. 

Society told them they had no individual value, they weren't even an extension, they were breeders and instructors, staying home, given an allowance, expected to follow, never lead.

Why choose to turn back the clock, reverse direction -- what's the purpose?

Did we make a "U Turn" somewhere since the 1950's?

Tarnished Golden Years

Plowed the fields                                                                                                       Cleaned the toilets                                                                                                   Survived the births                                                                                                     Fought the battles

Shared the bread

Saved the water

Found the money

Paved the way

 

Treated like a commodity

Told we have little value

Pushed to leave "our space”

Shelved as “out of date”

 

Predators circle

Smelling sweet success

Family far away

 

Tricks no treats 

Circling, following, pouncing

Waiting, watching, wondering

 

Youth is blind

Middle Age wears an eye patch

Old Age is told what to see

How Old Are You?

Usually sidestepping I decided this time to face the question and see the reaction.

She visibly jumped and immediately reached to put her arm around me even though I'd been walking on my own.

What's with this "age group"?

We were taught it's "not polite' and even "inconsiderate" to ask someone's age, race, educational or marital status.

Closest we've come is asking "Where'd you go to High School?" and that's after a conversation about where someone "grew up" starts.

We "birthed" this Gen and their offspring?                                                                   They seem to think today is where we've lived consistently.

It takes them time and often it requires a mixed age group for these "Gen Xers," who are actually close on our heels but don't realize it because they're so busy going through life stages they can't see where they are and where they're going.

Death walks in and reasoning walks out the door. 

I liked her, I still do, but it amazes me the questions 50 somethings ask directly.

No preparation.  Didn't know her name or relationship.                                                     A person obviously related; the Memorial Service was very small.

What happened to "polite conversation"?

Manners seem to have moved aside to instant gratification.                  

Where are the "manners"; not asking "personal questions" we taught?          

She seems bright and capable but this "direct question" of someone I just met is far too personal -- would she ask a contemporary what size Bra she wore on first meeting?

I know! She's amazed "people my age" aren't bent over, shuffling and having trouble processing simple sentences.

I like you but you really need to "get out" more and mix with all generations and not just see "growing older" as "getting senile".

Death isn't confined to age groups or "getting older'.

We are all, however, facing that "final curtain" and do not know when it will be drawn across our life. Even for Gen X the day grows closer.

Beginning of The End

In these words, I find the strength needed to share

Knowing you, who read, have a reason.                                                                         Need unfilled, often critical in timing and purpose.

A journey concerned, caring and confused, maybe alone.                               Medical error; no one admits

A few come to visit, some express concern.                                                                 Advice is their "contribution". Misinformation abounds.

Time and funds limited.                                                                                               Sons married living hundreds of miles away.                                                               Daughter trying to stay in college.

No cell phones or computers that could send pictures.                                 Believing each day would bring healing, life would change.

Lied to by the Hospital and the Doctors.                                                                     "All he has to do is gain a little more weight."

They knew what was happening to my husband.                                               They changed his dressing on the incision.

Record keeping often typed.                                                                                       Easy to "adjust" to "cover errors & omissions

The Dr writing them made the error.                                                                       Never set a foot near my husband on that fateful night.                                       Gave the direction on the phone to "lance" .

Infection or inability or both created a deep incision

HE was a SHE in the ER; short staffed, definitely.

SHE was unable to help my husband

         took out a phone and made a call

         followed orders given uncertain of how to proceed

        did as she was told

HE  was not in the ER

       was somewhere he didn't want to leave

       did not ask the right questions

       caused the beginning of the end

       did not appear all the time we were in the ER

       wrote the report, signed it stating HE did the cutting.

Sight unseen, she followed his direction              

He never saw the patient

He never ensured a Dr made the incision

How harmful his "advice" would prove to be

His failure to ensure competency led to my husband's death

It was 2009, personal computers were rare but hospitals had systems. 

No Dr attending. 

"She" made a call. 

Received directions to"lance" 

She did exactly as she was told.

Beginning of the end.

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.

Line of Descent

Life is life and death is death.                                                                                             Until the time when East meets West.

Extend your arms, reach out your hands,                                                                           Close your eyes & take a stand.

There they are, each one you knew,                                                                             Now gone as others and so will you.   

Parents left, then brothers, too.                                                                                       Sisters lingered as though they knew                                                                         When they walked on, so would you.

A line was formed and except for War                                                                         Each one came "home" to lay beside                                                                                 A wife, a child, in their own space.

You came and went leaving flowers for all,                                                           Knowing the day would come                                                                                     When you answered the call.

We wait for you to come and stay                                                                                   While now you turn and walk away.                                                                                   We too had hopes and plans like you.  

Some were done and some remain                                                                                 Others we took into this grave.                                                                                           It's up to you to carry on.                                                                        

To Move Is To Live

They sit in wheelchairs waiting. Some given privileges of chairs.

Forbidden to walk because they might fall. Too few caregivers.

Sometimes a smile from a passer by. Sometimes a glance of curiosity.

Dogs and cats greeted better than older human beings in facilities.

If life could only be like a story on a streaming service. . .

Where each of us who have abilities and choices change places . . . 

With family members in "Institutions". Would we then see?

Those who did not have or somehow lost the ways and means . . . 

Go through the doors of government subsidized Elder Care

Interesting they use the name "Elder" 

A title in many Communities given out of respect and honor

Are you so sure it's "as promised"? 

Have you really gone behind those "closed doors".

Do you see what you want to see because you need it to be?

I understand. I walked that walk. Everyday I had to work.

So hard to know we could not take Mom home.

She lived with us for over forty years into her 100th year.

We didn't want her "institutionalized".

We were finally able to move her but no money for private care.

Both of us had to work to survive.

We tried another facility and then another and another. 

LTC with government support was worse than kennels for animals.

Tears come to my eyes even today knowing what was done to us by the Church Lady is being done by others in a high tech world.

Predators are all around us as we move towards 2025

I found another attacking one of my Cousins.  

They are a devious group of humans, focused on self gain.

             

Do not go blindly, open your eyes wide.                                                                         When it's your time you'll see far too clearly.                                     

Society won't support you.  Your value is gone.                                 

Values are for what can be achieved and how fast.

Ability and possibility.

A commodity worth only what the market values.

Aging isn't what they tell you it is

When you're young and anxious to grow older.

When you arrive, it's not the destination you thought

No turning back, you can't even run away.

You'll stand up tall, hoping to look strong

Or bend over with the weight.

 

Looking into a darkness

Seeking to find the light

Making do, moving on, waiting for someone, anyone

And you, young one, see this as best for ME.

You who complain on ships about the food 

Waiting too long for anything, not enough space

Change places with me and see for yourself

Closed doors change points of view

Signed in, locked up, waiting for the light

A few privileged have it better, or so I'm told

I travel to meetings, conventions and find

What's practiced that's humane is few and far between

I will keep looking and writing seeing words are the way

To ensure those growing older will see better days.

Stop Pushing Me!

Close the door and the windows, please.                                                                       I’m tired of insects who buzz around                                                                            Looking for somewhere to feed.

Do, Watch, Contribute More.

If you don’t, you’ll close The Door.

Everyone’s waiting just for you

They can’t go another day

Without knowing ‘What’s New”

The pressure is strong

The days not so long

I juggle and leap

Getting very little sleep

 

If, When, How, Why

Everyone reaching for the Blue Sky

 

The Door That Will Open

Time that never stops

Life forever changed

When You’re “On The Top”

 

Remember those dolls?

I see at a glance

Their arms pulled to stretch

As we make them dance

 

Who’s pulling your strings

Who’s igniting your fire

What twists and turns 

Until you feel your life burn

The Treadmill 

Becomes a racetrack

We construct and design

Always seeing faster

Is at the head of the line

 

One at a time

Place a foot on the side

Deep breath, look around

Hear that familiar sound?

 

The person you want to be

Stands tall in your shoes

Run too fast

You’ll usually lose.

 

Slow down, sit and stay

Look around, take time to play.

Your inner child needs to rest

You’ve passed Life’s Greatest Test.

It's your race, not theirs

To walk or to run

To stand or to sit

In shadow or Sun.

When you measure you miss

The subtleness

Of This. . . 

Today followed yesterday

Tomorrow will too

It's your life you're living

You choose while you're giving.

Broken Family

Unification is all the rage

As we take our place on the center stage.

Looking around I fail to see

How everyone seems to be looking at me.

I have no control over what they do

Yet I feel the eyes and the shame they view.

When "Father Knows Best" is front and center

We "children of divorce" were unwelcome "Lepers".

With so much focus on family today

Those without almost always turn their face.

It's a lonely journey with a slow motion pace.

All of it seeming to face disgust and disgrace.

Not worthy of being called friend for so many

Plagued by a future pushing in so many ways

Life would be challenging each and every day.

Look in the mirror and see what you see.

Their measurements do not matter

Just be who you'll be.

Years pass, their time limited as yours.

You realized early the twists and the turns.

Life is a line you walk and you run

Often in shadow and sometimes in Sun.

It's your life to lead or follow 

You set the pace, do not form any disgrace

Look back and now ahead

See the life you've actually led.

Be proud of what you've done, where you've been

They don't control you now, they didn't control you then

See life as it was when you took the lead

Knowing you chose just how to proceed.

Turn away from the memories they no longer rule

While life is an education, it's no longer your school.

Gaining Peace of Mind

This Blog has travelled to many parts of the world.

Many speak different languages but all with a "common interest" -- CareGiving For A Loved One.

I've varied  writings about the time spent with Mom, the challenges of her unrecognized Dementia, the problems we encountered and were unable to resolve.

Knowing the challenge of unrecognized Dementia, of verbal abuse and manipulative control of the weakest among us who often were some of the most strong -- 

Taking advantage, getting "high" on manipulation and control of the weakest, wrecking havoc through  tearing families apart.

Julia appeared to "have it all" -- a beautiful home, active in the Community and in Church, volunteering to bring to those least able to attend an offering, a Communion, seeming to care when actually looking for their weaknesses to prey upon.

Learning shared brings peace of mind.

Reaching out I hope others will share their experiences.

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!

See the surprise, love, caring, passing of time on her face.

I just went through pictures of Mom.

In boxes & on my phone.                                                                                     Snapshots over 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 to common daily actions 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 times come without warning.

Being prepared meant survival and continuing.

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 entry was "When the Child Becomes The Mother" back on April 8, 2013. 

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 and 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 the masks we wore during COVID.)

It's often like those 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 the stretchable band around your head or ears.

It's always there sometimes slipping down or confusing others as to who you see and who you don't.

With LBD it only 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 and observations.

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 from 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 we took 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, her 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 September 2024. 

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.