Bethesda would not allow us to have "Hospice" unless we chose "their Hospice". They refused (now know they can't) allowing us to select our Hospice provider. In critical times, thinking rationally and constructively sometimes is forgotten.
To the very last it was all about "how much could they make", never what could they provide for her journey.
Daughter and I found a small area on each side of her and as our bodies touched, we felt the warmth slowly subsiding even though Mom's hands were continuously moving.
We'd seen those movements hundreds of times as she prepared with us for guests, family and friends, to arrive for life celebrations and just ordinary visits. We were a multi-generational family from the time our first born was just a few months old -- over 40 years.
Only daughter and my each taking a hand, holding it lovingly in ours and telling Mom/Grandma, "It's all right, you've finished the work you've wanted and needed to do. You can go now.
You're looking forward to being with family and friends," seemed to provide the release she needed to leave this world and our family unit.
Mom's hands were active to the very last breath she took.
Looking back. I realize there was more I should write . . . this entry and several others I started. . . . and then life...as always...seemed to move me away; need to survive, to cope, to adjust became the focus.
No one came to counsel us, checks on her were few and far between, they were simply waiting for what was "inevitable" -- and then there was the movement of her remains without any consideration for how it affected anyone experiencing and witnessing the "procedure".
SO COLD. SO UNCARING. Just another death for the facility.
To be expected? She was "old". Was it really her time?
Or was she no longer "useful" to the facility and to society who both determined the level of "caregiving" to be given when they controlled the pursestrings.
My husband was given a special mattress when he was in the hospital; but this place, this uncaring place where most turned away and just "let it happen" while providing for those who "paid extra" by using their facility's "Hospice Care" were accorded the privacy of a special room.
Mom was on Medicaid, as thousands who "live beyond" life years expectation find their journey. Our older population is being characterized as a "burden to society" as they no longer produce "income", do a society's measureable amount of "work" or serve any "recognizable purpose".
From Politics to Home Ownership -- our "elders" are being told to GET OUT, MOVE OUT, you're "useless". Shades of generations ago in less civilized societies.
It's now 2023, we said our last goodbye to Mom in January, 2014.
Looking back. I realize there was more I should write . . . this entry and several others I started. . . . and then life...as always...seemed to move me away; need to survive, to cope, to adjust became the focus.
For those who walk directly alongside on the journey from where we are to where we go, the road is filled with so many variations from smooth surfaces to huge potholes, from high visibility to dead stops due to impossibility to see where you're going.
Some say when they hear she died going into her 100th year how "fortunate" she was to have lived so long. Mom's life was filled with challenges and obstacles, born into a family that eventually had eleven children, ten of who would survive late into life.
Mom and her family members gave of themselves, the greatest gift we have, for others, in service to our Country, on the front lines and on the assembly line making parts and pieces and taught us the ways to ensure we value the world around us, natural and human made.
All the boys, six of them, served in the Military, one landing on Omaha Beach and others also "at the front"; the youngest "not allowed" to enlist, went to Canada to protect the Border and served with the Royal Canadian Mounted Police.
In those times, children only went to school until 8th grade and if they made it the full last year, they were very fortunate. There were four girls, five actually, one died as a baby, and Mom was the second oldest with two younger sisters.
Then it was "out to work" to help the family. Mom's older sister by ten years, "Tillie", really Matilda but that wasn't what she wanted to be called, had moved to the other side of the Mississippi River to the very BIG CITY of St Louis and into the State of Missouri from Illinois.
Mom followed and they both worked as domestics, one of the few ways "country girls" could work; a hard life and one with long hours -- cleaning and cooking. This was a "good job" for a thirteen year old where she could send money home to help care for her two younger sisters and one brother and share a place to live with Tillie and several others.
During the War Mom worked for Carter Carburetor on their assembly line; a job where someone else controlled the speed of the always moving belt carrying machinery used for the War Effort "Over There". Many injuries, long repetitive actions hours, few breaks
and always the concern to do more, faster, and with less.
I know Mom felt she was helping as many women did and trying to keep the wheels turning and the troops advancing so the day would come when the work would be done, World War II would be over, brothers, sons, uncles, friends would once again walk beside them.
She married "late in life" for the times, into her thirties. because of the War and few men of her age group "stayed behind". Mom met a divorced man. At her age this was common, not like today when marriage often occurs in later years.
I don't know what attracted her to him or IF she realized he was an alcoholic. Alcoholism was rampant among men yet never labeled for what it really was.
Even into the 1950's, it was a "personal problem" and one considered to be "of choice", when it was often used as a way to dull the senses, attempts to remove mental images and try to escape the never ending horrors many had seen or faced.
Dad had two children from his first marriage. I discovered this family history only through seeing a picture in an open drawer of him with another woman, a young boy and a young girl but never told about them and only realized what I'd seen decades later.
There was no Ancestry.com, no Internet and information was often hard to find and resided behind closed and often locked doors.
Because of the War and the economy, many men turned to numbing themselves with alcohol.
My Dad's "brand" was Hill & Hill, a convenient "hip or breast pocket size bottle". Whiskey. The kind that many build a tolerance to and so it takes more and more to "have an effect".
Mom said something once about getting married to help "Joe" not have to return to military life as men in their forties even with children were being "re-enlisted" to replace so many who died on the fields of battle -- he was twelve or thirteen years older than Mom.
Conversations about these "subjects" were not for children and even when I was "old enough" I didn't ask questions, didn't want to "ask about the family history" knowing Mom's life and mine had been very traumatic as we lived in fear of Dad's temper when he drank.
Dad believed in "spare the rod and spoil the child" -- only it was his belt he used.
He also believed (having come from a Catholic family) in punishing through having the "offender" kneel on hard floor surfaces -- never a carpet -- with stiff, straight posture ensuring the back never bent.
I don't recall being forced to pray but Dad always sat in front of me, watching as he consumed drink after drink, almost waiting for me to move or start to collapse to show his "authority" through snapping the belt sometimes in front of me but almost always against my young body trying hard to withstand this form of "punishment" for whatever he'd decided was"wrong" at the time.
This was a practice of many households, even my Mom's, where her Dad, as many did, sat at the table with their belt handy, ready to raise it and apply it, for any real or perceived "error or omission".
Mom said she was sad to leave her Mom but looked forward to not having to be around her father. Then she stepped into the same "dictatorial" relationship when she married, Joe.
Mom's life was hard work and caring for and about her brothers and sisters. Her marriage went from bad to worse and she always told me the best thing about it was -- she had "me".
Another time I'll write about how we lived, how we fled a life of fear, ran in all directions trying to stay ahead of Dad's ability somehow to find us, stand outside where Mom worked and shout humiliating false accusations about her to anyone who walked by. Not now.
For now, it's about my mother's amazing hands and how they gave so much to so many.
Even on her deathbed, she was working, most probably helping in the kitchen, one of her favorite places to show her love for family and friends.
Perhaps she was cooking and setting a table to welcome all who came, who joined together for everyday and to celebrate life's milestones and memories.
It was time. She was ready. All preparations were made.
Mom passed.
It wasn't a time we expected as she'd been in relatively good health for her age except for the Lewy Body Dementia we did not know about until the last few months after a hospital stay when she had a reaction to a drug she was given causing the Hospital to say "they thought she might have LBD".
It was 2013, the internet was in its infancy for research and content. Libraries didn't have information. True human connectivity would arrive years later and open our eyes and lives.
Dementia was lumped into that one word then and continues to be referred to as a "group" of mental/physical" challenges just beginning to gain recognition as a medical condition that may be preventable as we have done with other "afflictions" causing pain and suffering.
LEWY BODY DEMENTIA ASSOCIATION:
This secret thief of life has been recognized.
New possibilities and opportunities open doors and windows.
We can recognize this thief of mental ability, work to control and eventually eliminate its destruction and realize Dementia may be fully avoidable, controllable and at the very least managed.
Someone you know or you, will surely be exposed to this thief of mind and body functioning until we join together to learn, to understand, to eventually eradicate this destructive human condition.
READ. LEARN. UNDERSTAND. ADVOCATE.
Life is a gift to unwrap in all its layers and folds to understand, learn and help one another with their journey and our own.
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