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.

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.

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......