Come Immediately, Your Loved One Is Dying

 Originally posted October 23, 2015. Mom Passed January 2014. 

I've written about the challenges and complications when death in a LTC isn't anticipated, no warning, no consultation, just a call as you'll read below. 

Reposting because it's as prevalent today as it was then.

I believe many of today's  LTC's are heartless and self centered focusing on the bottom line and not residents. Owners are multi millionaires in many cases; these are what I call the "government funded facilities" where many on Medicaid are housed.

Readers, in the United States the cost of LTC is so high it bankrupts most Seniors very quickly. In today's economic challenging times, I believe we'll experience many more.

Thank you for reading my Blog. 

Yes, it's been a few years since Mom passed.

Do we ever forget a loved one who meant so much in our lives? 

I continue to advocate for Seniors and plan to find ways to do more.

Join my journey. Welcome and Thank You for continuing to visit.

The message can be unexpected and delivered quickly.

Come quickly. Your Mom is dying.

For me, the LPN, the Head Nurse on Mom's floor, called and wasn't looking for a conversation, wasn't looking to provide information. Direct and to the point.

Shock and awe. Unexpected in its announcement.

We'd missed visiting Mom for a few days; horrible winter storm; car was out of commission; temperatures dipped so low our old tires couldn't take it so we had four flats. 

AAA told us it would be at least 24 hours and possibly 48 hours before they could come.

Once again we felt the heavy weights of life pressing down faced with not knowing what to do, where to turn. 

Family?  None around. 

Friends? Since husband's death those numbers had dwindled.

Car was parked outside. Tires were frozen to the ground.

It would take every dollar we'd been able to put away from the part time jobs we were able to get to replace the four tires on the only car we had but we had to find a way to go and be with Mom.

Daughter and I passed the LPN who had called us on the phone as we walked into the facility. She was walking out, leaving for the day. 

We thought she would stop, talk with us and help us through this difficult time. 

We thought someone would approach us, meet with us, go over Mom's condition, their observations and above all, a Dr's report generating this call to come, of imminent death. 

She paused when we called to her. She said very little, only responding to our approach and restating how Mom's time had come and it was good we were there.

She didn't take time or get anyone to go with us, to explain to us what had happened, what was going on, what to expect or what could be done.

In the hospital, when my husband's death was imminent, we had compassionate, caring conversations with a Doctor who attended him. Why should this be so different, this "medical facility" just a step down from a hospital. 

Why do we accept having Long Term Care, residential facilities that are not mandated by law to provide educated and trained personnel round the clock who have training in communicating with residents and those directly in their lives -- and deaths?

Death doesn't come by appointment or any specific scheduled time just as falls, infections, cuts, urinary tract infections do not arrive or happen "on a specific schedule of 8 AM to 5 PM" which Missouri State Law currently requires an RN to be on premises. 

(NOTE: Believe there's finally a new law in MO but not sure if it's 24/7 RN coverage.)

I felt as though Mom was here today, gone tomorrow and someone else would replace her -- in her room, her bed, the space she "occupied" for what to me was so short a time compared to all the years we'd spent together. So challenging to walk in totally uninformed.

We weren't thinking clearly. 

We expected to be taken to the Hospice Room where we saw others go during "the last days".

Not for us because we "refused" to allow the facility to use their "in house" Hospice; we wanted to bring in a local very well known Hospital's Hospice Service. 

Denied. Not allowed. No one except their facility "Hospice".

Isn't Hospice a level of medical care? 

How can any Long Term Care Service deny medical care and not be severely fined by the State of Missouri? By the Federal Government? By Medicare? By Medicaid?

We were once again facing end of life with a close family member and our first response was to get to her as soon as possible.

Imagine our surprise when we arrived and Mom was in a public area. Not in her room. Not exhibiting any signs we thought we would see as "End of Life".

Among so many others -- being watched as a group by staff sitting behind a counter, talking about whatever interested them, occasionally answering a phone call or a question from a passer by. 

Maybe writing a few notes in a book or on a form and "seeming" to be working while obviously taking their time and making this activity last as long as possible to perhaps avoid another chore, one less desirable.

Mom was in the on floor dining/"holding" area in the Gerri chair that had become her place outside of the bed in the last couple of weeks -- where we'd found her several times before the weather became so difficult.

Mom's lift/recline chair had stopped being able to be used because it was in a reclining position and couldn't be moved -- the facility promised to have it fixed before we left but of course, no one did and no "substitute" was ordered for her even though this was her "bed" and this was the most comfortable place and one she wanted to be in.

We tried to get a report from the floor nurse(s). No one seemed to know anything. 

I asked them for Mom's daily report. They didn't seem to know what I was asking for and said we could talk to the facility RN, the one mandated by the State to be "on premises" during "regular daily business hours -- 8 to 5".

We waited about 20 to 30 minutes. She'd left for the day.

We asked for someone, anyone who could brief us as to what was going on, why they believed Mom was in the process of immediately dying.

No one came.  

We asked about what "signs" they had about Mom's passing as we were seeing the same person and the same low level of ability but not what we thought we'd see: visual signs with labored breathing, unconscious, perhaps, or some other visual "clue" life was ending. 

We observed nothing different from previous visits.

Mom was in a public area . . .  in a Gerry chair with her legs hanging over . . . and a poorly wrapped area on her leg . . . where we'd seen cuts from the unprotected sharp metal edges on the chair we'd drawn to the attention of the staff the last time we visited -- and, of course, had not been taken care of.

One of the LPN's suggested we move Mom into her bed "where she'd be more comfortable".

Once again, we'd drawn attention to what we considered to be neglect on the part of the facility. That seemed to be the trigger to move Mom into "her room"; the room she'd shared with a lady who was unconscious most of the time, we believed because she was a challenge when she was awake. 

Of course, HIPPA prevented our knowing the truth and since the woman was never visited by family while we were there (and we'd been visiting every day for several months), there was no one to talk to about any concerns for the woman's safety.

AND SO IT WENT FOR THREE NIGHTS AND FOUR DAYS with Mom.  

Yes, this could be called a "short time" to go through the process of dying but we weren't sure it hadn't been an additional four days we hadn't been able to come plus the four days we shared with Mom.

Honestly? We weren't sure Mom hadn't simply not been fed or given liquids for several days and there was nothing in any orders or requests she'd made for this type of "denial" or "elimination" -- especially without a Dr's review of Mom's medical condition and advisory to us, her POA's and her designated Medical Power of Attorneys.

Mom wasn't offered any water or food while we were there. There was no mention of her not being able to swallow or of concerns for her choking or the need to place her on IV or a feeding tube. 

Did she "refuse" food?  There was none to refuse. 

I finally had a call placed to the Dr and the "staff" brought in a tray with plates of food -- food like you and I would eat, a regular menu. 

No soft or pureed foods. No liquids only. 

We saw it as a "slap in the face" to us; as if we were so "incompetent" to believe she could eat at all and providing this "full meal" was their way of saying, "See, we told you, she won't eat."

Death comes in so many ways and when we witness the death of an older person in a long term care facility, are we witnessing a "death" or are we witnessing the affects of neglect and/or abuse?

Our thoughts return to our own experiences and frequent observations before this time of vigil: the person assigned to assist Mom or even to try to feed her busy with conversations with other workers, have four or more people to feed and therefore couldn't keep track of who had what and when .... or.....what?

Heard on NPR today that when someone is dying, they often don't eat. Yes, and in LTC's, individuals with Dementia often refuse many services because of their mental inabilties and incapacities.  

Does that mean a facility can simply ignore the person and their family? Ignore the family's need for consultation and qualified medical conversations?

Who determines when someone is dying in a Long Term Care Facility?  

More importantly, who's in charge? 

The LPN's, the single RN on duty during business hours? 

They're the ones who make the decisions concerning when the Dr is called and for what reasons. 

Only when we finally made contact, finally demanded the Dr be contacted and spoke directly with her did we learn there was  no order to deny food or water and she knew of no reason why this should be withheld. 

The biggest surprise was the Dr had not been contacted by the facility about the "imminent death" observed by the LPN who called us or anyone else.

Mom wasn't even being given an application of a wet cloth to her lips, her face, her hands.  There was not attempt to provide a bed bathing. There was no compassion. There was no human touch unless we asked for a temperature to be taken or her heartbeat listened to.

We had to ask for care giving -- turning her, propping her up on one side and then another. 

Guess they decided there would be no "end of life care" whatsoever. Guess that wasn't their "responsibility"?

It was as though they felt their "job" had ended with what they determined Mom's death was "imminent".  

Oh, they brought in a rolling cart for us with some beverages and nutrition bars and other things. I thought how cruel to have this in sight of Mom but not offer any communication, any touch, any small portion of human kindness.

This "neglect" went on until Mom's final day when a male LPN, who had showed great compassion and concern for Mom, returned to duty and was "assigned" to Mom's room. 

A reprieve.  Someone who would talk with us and who worked with us to make what became Mom's final hours more tolerable for her and for us.

Why didn't we receive a medical doctor's evaluation during these days we spent with Mom trying to cope, trying to sleep, daughter on the floor and I crawling into the non movable lift chair in its continual reclining position -- difficult to get into and really difficult to get out of and miserable to sleep in?

Advice from those who've walked and grieved alongside a loved one:

If you wonder why your loved one gets sick so much, wonder about the food they eat, the real quality and quantity. 

Don't take it for granted what you see on "special" visitation days in meals is what's always served. The facility is on display; they'll do their best and present their best.

Take note of "changes". Watch for those provisions like food on the floor in refrigerators and pantrys being reduced or eliminated. Missouri State Law requires offering snacks on a regular basis but it was only during and for a short time after the "inspections" Mom's facility followed those mandates.

Our Voices Are Raised -- Raise Yours

It's time we had a list, a readable checklist, of the State provisions for quality care of residents in Long Term Care Facilities. 

Detailed, inclusive, clear and concise language. 

A list we could access and take with us as a checklist to ensure the laws, the rules, the regulations are being adhered to for the safety of our loved ones and ensuring their quality of life is maintained and sustained.

Explicit and detailed. Give us the facts. Give us the right to a life of dignity to the very end.

Surviving A Predator: Part 1 of 2

In all the years I've had contact with family members, friends and neighbors who've had Dementia there's not one who would choose our family journey.

It takes away the person we were and moves us in directions we do not choose or want to go.

No one I have known wants to "revisit" Dementia, especially Lewy Body Dementia, seldom seen or recognized in its earliest stages.

The diagnosis "tentative" or "grouped" with other types of "possible Dementias".

The journey with Lewy Body Dementia, complex and often unrecognized, even when you live together every day.  

Most of us have heard a friend or a relative say, "Oh, he/she is just in one of his/her "moods". 

"Nothing seems to go right, every little thing seems to upset him/her, they just need more rest, better food and exercise ."

The Internet has opened windows and doors to look through and go through   . . . 

      If you know where to look for competent advice.

It's like taking a trip to an unknown country with no set date for departure and planning not to return to where you started.

It's been my personal journey that's been most challenging. 

Working with friends and other relatives along the pathway of life where Dementia joins the journey . . .

I've chosen to learn locally and nationally.                         Advocate in my State. Be a "guide" for others.                                                  Sharing information, resources and support.

I encourage others to seek qualified, quality, knowledgeable medical and life changing assistance from individuals, groups and organizations dedicated to providing a better life for people with Dementia and loved ones.

Living with LBD, Lewy Body Dementia, traveling the last life road with my Mom, there were extreme challenges and outside interference with no maps or roadsigns to guide us.

We are learning, knowledge is advancing, new discoveries are made almost every day but the journey remains long and often difficult.

Dementia of any "type" or "kind" can be both a mental and a physical destructive process. 

Science is studying, many major cities have medical facilities working on the challenges and enlightening those who find out about them  on better ways to make this challenging journey.

I encourage you to NOT believe it's a choice and it's not "inevitable" with a family history. 

We do not know the cause, we barely see the effects and there are currently no tests to determine the likelihood or probability of "having Dementia of any type".

Support and follow on line resources in your general community and across the United States -- even into foreign "forward thinking" societies who create and discover ways and means to try to postpone, delay and offset the effects and affects of all types of Dementias.

There are ways to make the journey easier for the person with Dementia and loved ones who support and protect their lives.

Use the Internet to learn, to keep and stay in touch. Carefully read for content and intent. 

Just as there can be "scammers" and "manipulators", as we experienced in places we trust, as we did our Church, they can live next door, down the street or on the Internet.

Find reliable, caring resources but always on guard knowing when we have vulnerability,  whether mental or physical or both, we are prey to those who take advantage of all ages and stages in life.

Julia was our "demon in angel's clothing" -- it was through our Church she came into our home and life changing our belief there is safety in "trusted" places. 

Predators take advantage of life challenges.                       They insert themselves in circumstances& vulnerability.

Some hide their "tracks"very well and you won't see their manipulation and control until they "strike their prey"--it's often not fully visible, may be questionable, and difficult to believe.

They take advantage of and maneuver their prey into positions of more vulnerability striking when least expected and often act as "concerned" and "wanting only the best" for those they prey upon.

Set Aside Manipulation and Control

Evaluating an action to be taken, I consider alternatives.

When the path is blocked, I attempt to go around, beside, between and look for ways providing smoother transition with less challenges for  myself and others.

Would that were always possible to get needed results.  

In a “perfect world” where the situation, the people, the times were all in sync, perhaps results would be different.

Continuing to allow the "status quo" put in place by my oldest son disrupts, displaces and decomposes life for me. 

Harm intentionally done to someone without care or consideration of the action or effect is what I've undergone since discovering the deceit of my oldest son.

He does not stand alone. 

His accomplice stands mostly silent and will most probably disclaim involvement although she participates actively through her refusal to speak up, speak out and change the situation.

I sound negative and some would say "vindictive". 

They can and do live whatever life they choose that does not directly affect my life and my daughter's.

I've tried various approaches and considerations. 

I’ve sustained injuries, losses and setbacks.

If truth and right were foremost, there would be no problem. Instead we deal with egos, feelings and self before others.

When others are involved, when they stand to lose at whatever cost in time, money or possible damage or injury, I have always taken a stand, fought the battle for however long. 

Growing older we still react, we still respond but we have that “history” behind us with many “what if’s” based on knowledge of what “has been”. I've not wanted to take action but feel time is of the essence. My life has been disrupted since my discovery and that was just a couple of months after my husband's death.

Am I a warrior? Do I seek causes? They come into my life. I don't always see them for the amount of time they will take, the level of involvement and the life experiences and challenges that will follow. Do any of us truly see the future in the present? 

Called to action. Shown the way. Given the choice. Now I'm faced with another decision. With possibilities and with probabilities.

When does a parent stop taking a grown child’s manipulation and control?

Tried to ensure no stone was left unturned as he grew from an infant into adulthood. Afraid, perhaps, not clearing the way, not providing the opportunities he would become like my father, a man lost inside of himself with only a bottle for comfort.

I’ve lived the life. I’ve seen the challenges. I cannot say I truly know or understand my father. My son once asked me to tell him about my father because he’d heard I’d said when he was born how much he looked like my father -- blue eyes and blond hair from two parents with dark hair, one with green eyes and one with hazel.

Genetics. You’re going to look like someone, usually, you’re related to. 

We have choices. We make decisions. We are in many ways the artists of our lives creating the finished work which time and circumstance put before us.

My son lacks empathy. He does not go outside of himself to consider how I felt, being the first in the line from my father, make that the third as he was married before my Mom and somewhere there are two others who called him “Dad”.

He does not consider it’s not about being male or female, it’s about being human.When there is a parent with questionable behaviors it doesn’t matter if they’re male or female or you are male or female, growing up you wonder if you, too, will live your life or succumb to whatever they did to become who they were. 

My son, like so many, is too “self focused”. 

He needs to reorient. I tried. We tried. 

While given many privileges, some would say far more than we should have, he was also given direction, a foundation and life tools. He chooses, he selects, he lives the life he creates. As with many, he chooses what to use, what to pick up and what to set aside.

I will continue to consider what actions to take, when and how. 

It has been a long Winter of life.

When my husband passed, I wrote about feeling like my life was in “jello” – shaken,disturbed and feeling the effects like a constant earthquake accompanied by tsunami’s, hurricanes and tornadoes. 

I knew the sun was there somewhere but the darkness hung like drapes in rooms where they were heavy, musty and always shut to block the sun, the view, the world beyond.

Now, I am gaining the strength to complete a task I started with my oldest son.  

It will most probably be a path I’m forced to walk because he is not a person of reason, a person who wants to communicate, someone who has the ability to set self aside and consider others first.

He is not alone. He walks this path of life with the support of another. It is his choice; it is their choice. Both believe they are moving through life together when they are actually in two separate orbits overlapping.

I cannot chose to support actions that negatively affect the lives of others. It is not just me who is directly affected by his words and actions, he also negatively affects his sister's life as he did his entire birth family for decades.

The decisions he has made will continue to be abusive to me and to others until it is changed. 

I know I must be the agent of change and yet I know the journey will be one I would prefer not to take.

Once I begin, this time I must continue until the resolution removes the abuse and returns my rights directly to me, not through him.

Each year that passes I hope he finds the courage it takes to see the reality of actions taken and opportunities set aside.

I understand, my very being reminds him of times past and actions he took harming those who gave him life and more.

Another beginning. 

An awakening of self. 

A rerouting in my life's journey.

Time lost. His choice. Sadly.

Self Centered Parenting

Retire. Retry. Redo.                                                                                         Rewind. Recreate. Recraft.

Life's simply a journey, from beginning to end.

Time can be a weapon, time can be a friend.   

Putting in time doing what others tell you to do . 

To earn time for what you want, it's true!

Grandkids in the picture? 

Kids live far away?                 

Visits “on screen” give moments on occasional days.                        

They grow older and we feel drawn to connect.              

What did you fill their minds with that’s so incorrect?          

You can’t control them forever. False info will collapse.                         

With minds of their own they'll see and they'll ask.

Grandparents abused by those who gained so much.

Fortunately have others to love and to touch.

Two are out, three more to go.

Each day they become, soon they will know.   

When will YOU grow up, how old will you be?

Will I still be here or will he and will she? 

Give it a chance. Give it your all!                               

Whatever you do, try never to “fall”.                

They hold you above when you've stood down below.     

How will they react when they truly know?      

Your day is coming and your time is near.   

What you've done unto others will bite you in the rear.

Time waits for no one, especially me.    

I’ll extend my hand, my heart and let’s see --

If each has the courage to connect with -- me.

One by one they grow older each day.                                                

Your influence and control wanes in so many ways.                   

It’s not being stubborn, it’s truth taking too long:                       

False accusations, actions meant to wrong.                                 

You both stand in the darkness embracing its call.                              

Sadly unable to see yourself fall.                                                       

You lit fires and sewed seeds. . .                                                     

Never aware of the weeds.                                                             

We’ll create a lifeline.We’ll somehow connect.                                 

You can’t control them forever, as much as you try.                   

And if you do succeed, one belief still applies:                                   

We’ll meet in due time, on the other side.                                               

CRITICAL INFO: Medicare/Medicaid State Operations Manual

Attending a meeting of a group I started at Mom's facility, a Family Council, family members expressed many of the same concerns, problems and issues we faced during Mom's two year stay. (Note: Written in 2014. Shows my positive involvement for decades and sadly how after ten years we're still struggling with the same challenges.)

New Administration in now for almost two years; new food service just put in place. What's changed? From visiting, observing and now listening to family members, very little. In fact, in some areas it's getting more challenging for residents and their families.

With this in mind, decided to go back through my dozens of files on information concerning Rights of Individuals living in facilities and putting them here, on this blog, hoping more people in the United States will be drawn to reading small sections and passing this blogsite and its information along to friends and families.

SUGGESTION:  Make a list of these Rights by exact entry, number and quote the verbage as it is written. Your voice has more meaning when you use this approach. Copy it down, don't depend on memory; carry this one and the others I'll write about with you. When needed, you'll have them with you.

APPRECIATE GREATLY THOSE WHO "LIKE" THE BLOG AND "FOLLOW" US. (Note: There were a handful compared to today, May 2024. I am so amazed to see how people around the world are reading and sharing with others)

As we age we all face a time when we will be "taken care of" by someone other than ourselves. We may need to live in a facility. That place should be safe, welcoming, and provide safety, security and compassion.

This entry begins an overview of areas I've found highly important for those who walk the road of responsibility working with or managing the care of a loved one living in a facility.

You can access the manual  Transmittals PP by going to the following site location. Just checked and it's been updated!
http://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/som107ap_pp_guidelines_ltcf.pdf

It's a few hundred pages long and a great reference.  As time passes, these entries may contain additions or deletions, there may be more sections. Please check for the latest information if this is blog is being read far past the posting date of 11-07-14. 

(Wow!  Ten years ago I hoped my voice would be heard. It's now early May 2024, the future and over 67,000 views.

Here's to 100,000+ with your help, my continued ability to seek, find, attend conferences and meetings and share so you and others have the ability to see what's available, what needs change and how you and your loved one can move through the challenges of Dementia.

CHALLENGE:  In facilities, it's mostly verbal communication. Even though they're required by law to keep written records, during visits and at Resident Care Planning meetings we did not receive any written report, everything was verbal.

What's your experience? Reminds me to find a way to put a Poll on this site. Learning as I go. 

P.S. Creating a NEW Blog Site where we'll have the ability to communicate and more info can be shared.

Here's the exact citation from the Medicare/Medicaid State Operations Manual governing ALL the United States as linked above:

#1  Resident and/or Legal Representative has/have the right to access by verbal request all records. FACILITY CANNOT MANDATE A WRITTEN REQUEST

Why do you think this is important, verbal being enough to obtain records? Possible physical challenges limiting ability to write; eyesight challenges or other limitations often come with aging.      
                Limited abilities should not limit accessibility.

§483.10(b)(2) -- The resident or his or her legal representative has the right-- 

1. Upon an oral or written request, to access all records pertaining to himself or herself including current clinical records within 24 hours (excluding weekends and holidays); and (ii) After receipt of his or her records for inspection, to purchase at a cost not to exceed the community standard photocopies of the records or any portions of them upon request and 2 working days advance notice to the facility.

Interpretive Guidelines §483.10(b)(2)

An oral request is sufficient to produce the current record for review."

********IMPORTANT TO REMEMBER FROM ABOVE************

(1) oral OR written request for access to records

(2) access MUST BE granted within 24 hours --

                        (excluding weekends and holidays)

(3) AFTER receipt of records for inspection, to purchase at a reasonable community standards (think library copying or Office Supply Store) standard photocopies of the records OR ANY PORTION of them

(2) 2 working days advance notice

PLEASE NOTICE:  There is no time of day/night specified allolwance for your completion of your examination. 

UNLESS THERE ARE OTHER FEDERALLY  OR STATE MANDATED LIMITATIONS, you have the right to review these documents (1) more than once (2) on a basis of multiple days.

THE CHALLENGE. Unless you request "all records" and include any "historical records on file obtained from outside sources" or specify exact types of files, reports, papers, you may be given whatever the facility "wants you to have" and claim those are the "records".

RESIDENTS AND LEGAL REPRESENTATIVES:  You have the right to request a formal, written copy of the resident's Care Plan and any and all reports that directly affect decisions made by the facility on that Care Plan.

CHALLENGE:  Discovering what records are kept by their "in house" name or "State Required Title". 

Another quest as I move forward sharing and opening doors.

TO PROTECT OUR SENIORS, to judiciously manage their care, to ensure effective use of funds through systems we all pay for -- Medicare and Medicaid -- more effective record keeping and sharing should be a top priority.

Question: Did you know you, the resident, or the appointed representative and/or both, can review and determine and consult outside of the facility or get another opinion (probably at your own expense, but you have that choice; check your medical coverage) concerning the Care Plan.

KEEP THOSE COPIES. They're valuable papers in understanding treatment and progressions or regressions.

MY GOAL:  A COMMUNITY WORKING TOGETHER.

My writing, your reading and for those of you who choose, your submissions of additional information, will protect our loved ones when we cannot be with them, and ourselves, as we age and move through various life challenges and stages of life.

A Sincere Thank You For Sharing This Blog With Others

Mother's Day Without Mom

Mom laid on the bed, the uncomfortable, hospital bed, without anyone in the Long Term Care facility caring enough to provide her with a more comfortable last earthly place of rest. 

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.

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 and how it affected the bottom line 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 and their savings or other "convertible assets" 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".  

In reality, they valiantly lived through times and ways of life their Great and Great Great Grandchildren refuse to tolerate and even demonstrate and become activists for causes and beliefs.

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 2024, 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, most children were fortunate to attend 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.

Duty and Service. Family and Country. 

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 late 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:

https://www.lbda.org 

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 and at the very least managed as it develops.

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.

Another Predator Enters Our Family Life

May 2024. Ten years since Mom's passing 14 since husband's. 

Our journey was filled with medical and life interruptions looking back we should have seen as "signs".

Here & Now was just yesterday and will be tomorrow.

I've focused on bringing into the light and lives of people information from personal experience, challenges with the "system" in place, experiences, lessons learned then and now, still applicable and needing change.

How we can walk alongside loved ones, friends, family members and those we meet along life's path.

Currently I've been working for and with a relative who has their own version of "the Church Lady" 

A man, a neighbor, who saw an opportunity months ago when my relative's wife was diagnosed with Cancer and it was fast moving. 

Yes, please don't think a "predator" is one type or age. Male and female, young and old, can take advantage. Causing great loss and tremendous personal challenges.

It's a Jungle out there! Those who are weakened by physical, mental or emotional challenges are prey for those who see this as opportunity to gain for themselves. 

Putting on a mask of "wanting to help, being concerned" the fear of loss prominent with Cancer for her and medical challenges for him.

The "predator" steps up and "counsels" the already concerned and emotionally challenged with the BIG FEAR -- loss of everything they have TO OTHERS -- having to go into a facility and losing all assets including home, property, savings, etc.

All the while this stalker is gaining the confidence of the weakened and concerned Senior.

To me this is the lowest of the low but apparently others see this as taking advantage of an opportunity "they" want and need and this "older person" won't be around that much longer.

Some predators apparently believe they should "replace" a family member OR step into the line of succession acquiring assets because they've "performed a service" for the Senior.

Befriending for personal gain is a common practice. 

Influencing a Senior for personal gain  in times of severe life challenges is beneath being human. 

What can you do? Good question. 

One place is to go is to your local Ombudsman office. They vary in capability and capacity from State to State and can have different names, making it a little challenging to find.

Start there. Look for other Department of Senior Services and do not give up. It can be a complicated system, however, it's a human life, often of someone near and dear to you and worth the effort.

Just had a thought as I move down this Road I've decided to continue traveling. Can't say it will be tomorrow or even next week but with the help of my local Ombudsman and some other resources, perhaps I can share with you the opportunities and possibilities for you.

Noticed there have been "readers" of this Blog from around the world and I have no knowledge of what your country or area may offer or have available if any. 

ANNOUNCEMENT:  I'm looking to move this site because it's a limited format and there's so much more I believe can be included and offered with a more "open" Blog.

Hoping you'll join me on my journey and will find a way to let you know when this "dream", this "plan" becomes a reality.

Thank you. Appreciate your continuing visits and telling others about this journey I'm sharing hoping others will benefit.

Multi Gen One Home Living

Number of Americans who live in multigenerational family households is about four times larger than it was in the 1970's. while the number in other types of homes grew by far less. 

The share of the U.S. population living in multigenerational homes more than doubled over the past five decades.

Forty Years Living Together

Four decades creating a single family home for three generations 

Mom’s generation worked until they died and sometimes it happened in the field, the garden, the kitchen or the bedroom. 

Girls were trained to nurture and adapted to being trained to manufacture carburetors and even bombs.

Baby Boomers debuted into a Brave New World where women would eventually be treated almost equally and for some years have rights denied their Mothers.

Too chaotic for you and yours? Melding, merging, three generations. Who’s the “parent” and how does Grandma or Gramps “step back” or do they “step forward” and become the “enforcer”?

How many of you recall the saying of a few decades ago “It takes a village”?  In our community, we were the only ‘multi gen” family for a couple of decades.

 We’ve been in our current home, after moving around the country, since 1978 – over forty years. 

Just as we are redefining who each of us is or wants to be, we have the ability to choose how and with whom we want to live. MultiGen Living is a choice not many make.

Ever watch an orchestra being led by a conductor? Different instruments. 

Individuals with specific skill sets used in unique ways.

Instruments that could stand alone.

Together the range and scope of the music is wider, more complex and more interesting.

To us, it was natural. Mom was a beautician, she fell and broke her wrist, Dad was out of the picture years ago finally passed when I was going into my second semester at college from the alcoholic life he lived. 

It’s not for everyone just as some choose not to have children, some couples lead totally separate lives except they do it under one roof. 

Sources:  Retirement Living Sourcebook  

                Pew Research