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.

Another Entry From Before Mom's Passing

This entry was begun on 12/21; just days before Christmas Eve and Mom's first "hint" we were possibly closer to the end than the beginning of her stay at her current facility.


Over the time I've been blogging, I've started several "drafts" and set them aside. Sometimes I read them and think I'm being too harsh, not objective enough, including too many "personal things" those who read this blog may not be interested in my sharing.


Now, with Mom's departure, I'm going back, rereading this and other communication I've had with family and friends and seeing with "new" eyes things I believe need to be shared or at least brought into the light.


Again, this was written well before Mom's behaviours and our observations began to see definitive changes, or "end of days" as we experienced in what was to be a very short time.


What do you do when those around you are focusing on "the end"?



If you're me, you analyze, research and remember you know Mom the best of anyone, even the other two POA's, your son and your daughter. But you value their insights and opinions and seek their counsel because we are family; we are Mom's caring family and have been for decades.



Sharing this responsibility has given them insight into aging they would not have had. It's meant for my one son, who lives cross country and travels internationally, the ability to continue his life knowing we have open and constant communication and we're here to ensure Mom/Grandma is given quality of life and she's cared for at a level of her needs and wants.

For my daughter who values a multi generational lifestyle, it's given her insight into the years down the road when she will be me and I will be my Mom.

So, there's that question about "the end" of life, that is.  How do you know when it's really there? Internet and many resources including www.lbda.org and others give insights. But I've been taught to question, to look deeper, to ask more. It's a blessing and sometimes not.

My analytical side (scientific side) wants to know if the "observations" cited of behaviours as well as physical challenges are due to the disease or to actions taken in the course of the disase.


What would Mom want if she knew what was going on now in her life?
 

I reflect on many conversations she had about her Mom and how she felt about how she thought her mom was being treated; about sisters and brothers in SNC's and their treatment. About her own reflection on wishing she never had to go into a facility and believing the only time a person should be in one was when they didn't know where they were.
 

It seems we've crossed over from the time when Mom "came back" more easily from infections and neglect causing sores, cuts and even the need for stitches.


She's still on antibiotics and they play havoc with her body and her mind. Typical Lewy Body Dementia reaction.


And, that's the real challenge: What's "typical" of the disease stage and what's an accurate evaluation of progression. How "far back" will Mom be when this course of treatment ends? How soon will we see another infection?



Question: When Mom returned to the Skilled Nursing Center, she came back after having spent the last two days in isolation due to a Vacomyacin resistant type of infection.


At the SNC, they immediately returned her to her room complete with roommate who appears to be drugged most of the time (probably on Hospice) and "brought back" to consciousness to eat some meals.
 

Infections and diseases are rampant at the facility. Reminds me of the first hospital where my husband stayed. We finally "got smart" and realized we needed another medical facility and took him to the same hospital where we now take Mom.


They have a program of infectious disease control and practices that protect patients far better and should be more widely practiced by hospitals, Rehab facilities and especially Skilled Nursing Facilities.



STATEMENT:  A resident of a Skilled Nursing Center is there for one reason in the State of Missouri: he/she has medical conditions needing 24/7 attention by a level of medical care determined by the State as allowing a minimum level of LPN supervision. (My personal  opinion, they need RN staff; it shows when they try certain procedures or when more medical attention or observation is needed)
.

So many people see LBD as Alzheimer's and categorize it as being the same. It's definitely not and requires a higher level of accommodation. Interesting how we have "Alzheimer's Programs" and "Alzheimer's Units" but there's no "special treatment" let alone in many facilities there isn't even recognition of the disease as real Dementia.


Many people, professionals and the general public, see both as irreversible and as stages well defined. Not so.


We've walked this path and have been amazed at the cognitive level that can still exist -- even now.
 


Question #1:  What effect do drugs currently chosen to change the behaviours of the elderly have on their physical and mental capacity?
 

If Mom reacts to pain from an infection or from someone's lack of care in moving her, should we "mask" this ability to recognize yet not fully communicate her objection or recognition?
 

Who are we serving by not addressing the real issue, the infection or the procedure?



Question #2:  Is a series of medications to "ease" her transition into this "time in life" which others have said appears to be "the end stage" what she would want and how she would choose to live her "last days"?



While not a "self medicator", Mom valued medicine and the abilities it provided.


She doesn't want to be resuscitated but does that mean she gives us permission to "create" this situation through allowing "nature" to take its course and put her into a situation where infection takes over her body and causes functions to cease or actions to begin that intervene in the daily functioning of her body?



Question #3: Are we becoming a society that has redefined death as "OK" by whatever means once a certain age has been reached?


Haven't we gone that direction by saying someone is or is not a candidate for a medical procedure based on age? That is, of course, unless they have the financial means to procure the method withheld generally simply because if "we, the people" are paying for it, the cost at that age doesn't provide "productive results" and so why give, administer or provide?


It's necessary, you say? We may only have so much of something or so many to provide and must use this form of "control" to assure provision is where it can provide "results"? Perhaps this can be justified by need for an organ or other donation but should we be applying the same "medical reasoning/judgment" for more common procedures and medications let alone everyday treatment within a Skilled Nursing Facility and/or hospital or by a doctor or other medical person?



Question #4: Age is a criteria but what about life's value?


Saw a billboard the other day clearly advocating for the "right to life" of the unborn but it cited three age groups and a "beating heart" at 90, 25 and 13 days (these ages aren't accurate but approximate as cannot specifically remember) as being "life". That's one of the few times lately I've seen anything advocating for the "right to life" of someone in the most advanced years our current American population is experiencing.


You are among those who set the "rules" of life wherever you live.


How does your society, if you live outside the United States, treat the elderly, especially those who need assistance with daily living at advanced care giving levels -- feeding, toileting, dressing, moving from place to place, etc.?


Comments welcomed.