Reaching Out, Touching Lives, Making A Difference

Met with another daughter of a mother with Lewy Body Dementia earlier today. Julie was her name. 

How strange. Julia -- with an "a' was the name of the woman who abused Mom and claimed I was the abuser -- see many entries about this nightmare created by a woman who is still licensed as an RN and to my knowledge is still "providing care giving services" to Seniors. 

Wonder if she's still focused on working with those whose children live out of State -- or did her experience with me and Mom show her she could "expand" safely even into families that were multigenerational?

Julia reapplied to the State of Missouri and reactivated her expired RN license -- it made her a "required" and UNQUESTIONED mandated reporter of "elder abuse".

She'd told me once...well before the time when she came into our immediate family life.....she often helped them "get rid of things" and even helped to "move them into facilities".

How convenient, I think now.  Get their and their children's trust and confidence, then you can move in to move on to your next "conquest"?

Julia decided, in my opinion,Mom was a "good mark" to exploit and I, who had the same name as her mother, someone she did not have a good relationship with, "deserved" to be separated from my mother. 

Those are the conclusions I've drawn with the passing of years since Mom's death.

I've had a slight "aversion" to that name ever since -- know I shouldn't but if you read about how she manipulated, controlled and destroyed the life we had as a multigenerational family for almost four decades -- you'll understand.

Checking this Blog; wondering if it's still "being read" meaning reaching someone, somewhere who is struggling with understanding and going through the "jello" of LBD or even other types of Dementia, I saw someone had just read the entry dated Sunday, April 20, 2014 (wow.....over five years ago) and titled: Constructing Change: Teepa Snow, Whoopi Goldberg, Kelsey Grammar

Although there have been new discoveries about the brain and about Dementia, including Lewy Body Dementia, in the more than five years that have passed since I wrote the entry, it's still relevant and useful as are my other varied entries to date spanning over seven years.

I met with Julie today after she reached out to me from an entry I made on line in a "local" Neighborhood chat site where people ask for help with many things including care giving for loved ones.

She'd been to a Neurologist and so many others who had no real clue about what was going on or misdiagnosed what they saw as so many other afflictions.

We sat and talked about where she is with her Mom. She'd just been told by their Primary Care Doctor her Mom had Lewy Body Dementia with Parkinsons.

FASCINATING. And he was with one of the three associated hospitals of the main hospital where I first saw the words as a diagnosis of Lewy Body Dementia, possibly mid to late, after Mom was hospitalized with a urinary tract infection.

PROGRESSION.  
     WORD IS SPREADING. 
           KNOWLEGE IS GROWING. 

We are succeeding in raising awareness about this debilitating medical challenge.

I asked her where her Mom had been "placed" in the measuring of "how far along" with the challenge and she said he hadn't mentioned.

I encouraged her to reconnect with the Dr and ask for a further diagnosis as to whether it was, in his medical opinion, early, mid or late stage.

IT'S TIME ... MEDICAL COMMUNITY.  

THIS IS A CRITICAL AREA OF NEED FOR INFORMATION, DIRECTION AND GUIDANCE.

We live with it every day. It's at the top of our life's list.

We need your "engagement" in our challenge.

We need you to "become involved" more directly, with greater consideration of OUR NEED TO KNOW, TO UNDERSTAND...so that we can shift this burden to a more manageable load as we continue to walk with and beside family members and friends as they walk this ever varying road called LEWY BODY DEMENTIA.


SCARY, TOO.  Misdiagnosis can lead to providing medications that can cause severe damage and bad reactions and unfortunately.....even death.

i realize Lewy Body Dementia is difficult to determine but you, the medical community simply need to put more value on this disease as has been previously placed on others and we'll have more ability to manage, if not control, its effects and affects.

It's time to be informed about ALL the  "TYPES" of Dementia. 

IT'S TIME TO FIGHT DEMENTIA AS WE ONCE RECOGNIZED AND JOINED TOGETHER TO FIGHT CANCER AND HEART DISEASE.

And....I have to admit....

What surprised me was when Julie told me she had to wait a year to "get into the program" at the hospital to go through more analysis of the disease.

WAKE UP AMERICA!  

WOULD WE DO THIS TO A CANCER PATIENT?  

Or maybe we do? Although my personal recent experience has been medical facilities for two friends acted quickly when they were discovered to have Cancer.

Or, is it because Julie's mother is fortunate. She's in an Assisted Living facility, a nice one -- although as Julie said, she's not really sure how "hands on" and "capable" they are.

We talked about the three levels of living for Seniors -- Independent, Assisted and Long Term -- and the State requirements for residency by individuals in their levels of capability or need.

Julie's Mom is one of the more fortunate as she has good Insurance Coverage -- few people do -- for these services.

Perhaps the Dr. felt there were limited spaces in the program and because the mother was in a residential care facility the "immediate need to know" the level of the Mother's Dementia and any "assistance" was perhaps not as "urgent" as for others.

OR.....perhaps the Doctor believes the woman is really doing better than she actually is.

Although he could see the LBD and noticed the symptoms of the shaking (labled as Parkinson's), he might not realize TIME IS OF THE ESSENCE.

People with LBD who are provided with mental stimulation, environments providing levels of mental challenge that works for the individual with physical activity and interaction that stimulates -- even attempting new skills or additional skillsets -- CAN POSITIVELY AFFECT THE  DISEASE PROGRESSION AND STAVE OFF MORE RAPID PROGRESSION.

Yes, it works. We watched it work. 

We didn't realize it at the time because we did not know about LBD but daughter and I now know we effectively helped Mom to live longer and a better life because of what we did for and with her.

And -- quality of food and types of food

And -- keeping mind and body active.

We could not stop the disease that is Dementia -- and that is what it is, just like Cancer which we're told "lies in wait in our bodies".

We gave Mom an environment that stimulated her mind and body and we found that even when she had periods of Aphasia, as mentioned in another article I wrote, she retained more independence and capability.

It was a difficult journey. The memories still present challenges. 

I would not have asked to live many times in life I've been given but I am grateful I was also, somehow, provided then and now with the ability to find ways to be of service to others who walked, are walking and will walk this disruptive life path.

World Of Differences: RIP Jesse Combs: a lesson she continues to teach

Media sets the pace in the length of our strides and often tries to determine whether we walk or run and in which direction.  

Ever so slowly over many years the "personality newsperson" has edged into the industry and now appears to be, at least on the national level, the rule rather than the exception.

There are thousands of "media influencers" many of whom we can carry in the palm of our hands or out into far corners of the world; they have great power to wield.

Took a few minutes to watch CBS several mornings ago and listened to a report on the female race car driver who was killed trying to break the women's land speed record.

On line and on screen Jesse Combs was referred to as the "fastest woman on wheels". 

CBS made a point of showing how "different she was" and citing how she did many usually "male" activities like repairing cars.

This comparison to what is typically "male" and typically "female" continues the division and the separation of men and women in STEM and in the work community in general.

Media who continue to use terminologies and comparisons from "another century" fail to serve the public for whom they work and often cause continuation of past practices of discrimination and lack of inclusion.

Competition. Sports and activities throughout our early lives build into us the NEED to "rise above, stand out, be first".

Less time is devoted to Team Work, supporting others in achieving goals, with more time devoted to those who "stand  out" rather than building the skills of those "with ability" being not chosen, not selected, overlooked and undervalued.

Our educational system is based on individual achievement and measurement and so is the majority of our work evaluation. 

The most admiration seems to go to the "winning team" or the "top achiever". We're not taught enough to value the experience, the "working together".

Even in sports that are "team oriented" we seldom see the team as a group lauded for their achievements -- we feel a need to "single out" and "find" one or a couple of "outstanding athletes" giving awards, higher compensation and recognition.

However, a few months ago when the St Louis Blues won the Stanley Cup, we saw how teamwork wins -- they were a unit, they worked together. 

There were outstanding plays and exceptional players but the focus each one gave was of the group and the people who supported and believed in them.

And, today at all levels on rinks around America you'll see some young girls and young women out there, showing how they can move alongside, with and independently to "bring home the gold" as a team.

When the St Louis Blues "brought the cup home", they didn't "hide it" -- they took it and continue to take it around the St Louis area allowing more people than ever before to be a part of the "achievement", to feel "they too" had participated and "brought home the cup".

Young boys AND girls have touched, felt the pride and seen the possibilities of hard work individually and as a team. 

Way To Go Blues!

Even their "image" of "Gloria" and "Stanley" sets a new level of recognition for a sports "mantra" to be shared.

While singular achievement is critical to a society, working together is also critical to asking questions and finding answers. 

One person may discover but it often takes a community, a group, a team to bring the idea to fruition.

In my current search for enlightenment in the Senior Long Term Care "industry" I believe it's not just the facilities but also society, groups and organizations and especially laws and practices at all levels that are the challenges to ensure we grow older and walk our live's path not dreading or fearing what's "to come".

I cannot look and not seek to learn when I  find a problem.

It often sets me on another journey I'd not seen or preplanned but life is not always as we'd planned, as we wanted, as we believed it would or should be.

And it often brings me and those who choose to learn....enlightenment.

It's our choice, yours and mine, individually, if we accept and simply wait our turn or if we choose to recognize and shine the light for others to follow and understand. 

It's when we build awareness, foster involvement and encourage action we teach a lesson and learn from it at the same time.

Generational Shift; Moving The Bar To My Level

A death of someone close or closer in age reminds us of our own mortality. 

We listen, watch and learn as we see others move along the path of life, dying and death.

A funeral. Same Church Mom was taken to; her choice; our love of her to fulfill, to participate, to ackowledge her departure.

A cousin by marriage. Close in age but not really close as we lived "in the city" and she and her husband lived "in the country" far enough in time and distance and leading their lives having and raising a family as we were.

My time. But it really wasn't. Thinking back. Yes, there were occasions, events, special times. 

The direction was always "moving ahead" against odds and challenges purposely moved aside in order to move ahead -- education, activities, family times -- prioritizing the positive while dealing with the negatives life hands out without any respect for to whom, when, where, how many times and how much disturbance is given.

Now I supposedly have "my time". 

Desires to continue to become -- before my time not to have choices, preferences, capability and capacity enter my life's door and that final curtain is drawn.

Life isn't selective although it often feels like it is; we are born, we live and we pass through this life.

No matter what you believe about here, now, there, whenever, as we walk, run, stand and wait watching others and ourselves move through life challenges, it's always a learning experience.

My cousin is now faced with "the process" of the absence and change that accompanies losing a spouse of many years.

Remembering the "period of adjustment" most in our age group went through as we married and started "cohabitating" -- so different from many today who chose to live together.

I wonder....if/when they marry and one or the other departs this life...will it be the same....I think the loss will be but the memories will be slightly changed.

How do we react to the loss? Each of us has our own tape measure; each of us has a life affected in different ways and so reacts at the moment and each step along life's continuing road very differently.

Some judge. Some evaluate. Some decide. The "some" being family, friends, acquaintances even. 

Sad but true; others are really thinking either been there, done that or glad it's not me or what now for her/him.

We are residents of the here and now asked to consider, evaluate and conclude about today, the future and the hereafter -- meaning our leaving this life.

Best we can do, in my opinion, is stop judging, start talking and above all live today as it will soon be tomorrow built on yesterdays.

Fence Sitters....It's Time To Read, Write and Speak UP!

Do you question your Doctor? Do you question their recommendations, services, communication?

Think what it's like when you have limited ability to communicate let alone be heard.

Let's do some research. 

Here's a website providing State by State "regulations"

The report is from 2010---does that mean the regulations and practices have not changed since that time?

Here's the website:

https://theconsumervoice.org/uploads/files/issues/Harrington-state-staffing-table-2010.pdf

Here's the top of the first page:

FEDERAL STAFFING: 1 RN 8 consecutive hrs/7 days/wk & 1 RN/LVN for 2 remaining shifts. 

Must have 1 RN who is full-time DON (5 days/wk); if fewer than 60 residents, DON may also be Charge Nurse.

 (For 100 residents, LN .30 hours per resident day (hprd) would be required.) SC= State Code SAL = State Administrative Law (Rules and Regulations) SDP = State Departmental Written Policy

The State of Missouri info is here:

MO SUFFICIENT STAFF: to attain or maintain the highest practicable level of physical, mental and psychosocial well-being

LICENSED STAFF (RN, LPN/LVN) 1 DON RN included in 1 RN Day and 1 RN/LPN Eve & Night and 1 RN on call if only LPN on duty 

When DON is LPN, an RN should consult 4 hours per week.

DIRECT CARE STAFF No minimum requirement (RN .08) LN .24 SAL: MO Code of State Regulation 19 CSR 30-85 (34)- (38) Eff. 1-30-04. http://www.sos.mo.gov/adrules/csr /current/19csr/19c30-85.pdf

SAL: Intermediate Care Facility: 1 DON RN/LPN. If LPN is DON, RN must be a consultant 4 hrs/wk included in 1 RN/LPN Day on duty and 1 RN/LPN on call 24hrs/7days.

Online Updates: Missouri Code of State Regulations: http://www.sos.mo.gov/adrules/csr/csr.a sp Legislative Updates: Missouri General Assembly: http://www.moga.mo.gov/statutesearch/

Missouri, for some reason, and other States as well, created "loopholes" most probably to "benefit" donors/supporters with vested interests -- I "bolded" the specific words that allow LTC's in Missouri to operate without sufficient ON SITE Medical Personnel:  "1 RN on call if only LPN on duty".

"on call" -- not in the facility, not able to assist with a life or death situation (this is an LTC and emergencies are constant)

We listen to reports of the 60's; we give vocal "honor" to our Veterans from WWII, Korea, Vietnam. 

We value families and many support valuing the unborn. 

WHERE DO WE SHOW WE VALUE OUR AGING POPULATION -- THE MOST VULNERABLE?

Do you write your Congressperson?  Time to put in a word about how people, many of whom still vote (LTC's often serve as Polling Places or bring Absentee Ballots to residents) are "in harms way" without GOOD HEALTHCARE IN LONG TERM CARE & GOOD QUALITY OF LIFE.

Remember.....not everyone in LTC is a Senior---laws vary.

Speak Up! Speak Out!

There are members of a Generation who have been labled "The Silent Generation" -- YOU ARE THEIR VOICES and those moving up in the age brackets or the medical needs statistics

You are the voices of those removed from speaking out, who are being silenced by drugs, who have advanced Dementia or who have no means to make private calls or use a computer to contact their Congressperson.

YOU ARE THE VOICE FOR EACH PERSON as we move along life's road and often find ourselves in places we'd prefer not to be in ways we wouldn't consider and with people who are "doing a job" without realizing how very low the standards are and how very high the needs remain.

Remember the history lessons....they came for.... I didn't speak up....

Think your time in LTC is far in the future?  Think about medical conditions where you'll need at least a short term stay...or possibly longer -- say 100 days. 

Read, write, share the information and advocate....advocate and bring about change!

Planted: Flowers For Carol; Remembering What Others Want Forgotten

The bright yellow chrysanthemum plant reminds me every time I look out my kitchen window, walk outside my back door, of the friendship and concern we had for each other, Carol and our family.

We'd bought it for her birthday. We'd celebrated her birthday for the past several years as we'd celebrated all the holidays spending time together.

In Hospice. Not her choice. Read the entry Last Rites for Carol.

We weren't told she passed.  I knew they wouldn't contact me. They don't recognize residents when they die. As a family we had a small reception at the facility when Mom passed but we had to go personally around to people and "invite them".  

Death isn't to be acknowledged although they lead people down the last path they'll travel every day and along the way they make friends in the facility. Friends who learn "through the grape vine" -- if they're lucky.

We weren't considered anyone worthy of being told, I suppose. Seven plus years of friendship, providing for Carol and being there for her wasn't enough. 

We didn't have a signed slip of paper, no POA or other directive. I'm sure Carol was told we'd be contacted but it's now been almost two months and not even a card or phone call

OH,BUT THERE HAVE BEEN THE SOLICITATIONS FROM THE PARENT COMPANY FOR DONATIONS TO "HELP" THE RESIDENTS.  

What they really mean is for selected individuals to "help themselves" to increases in already high salaries (for ten or more well over $100,000 each) -- in a Not For Profit.

We had brought her some small gifts. 

We often brought things she needed or wanted. 

Lotion, liquid soap, shampoo, deodorant -- daily items of brands she preferred. 

Baseball style hats from our travels which she loved. 

Some clothing items; she bought things from their onsite "charity shop" which she loved and once worked in but something from "the outside world of shopping" lifted her spirits as it was new, truly "hers" and specially chosen for her.

No clothing any more; she wore only hospital gowns. 

A few times they dressed her -- when I spoke up and insisted. But I had no "power", no "right" and they knew it. So they continued placing Carol's feet on death's path.

They had her open the door by "agreeing" to go into Hospice. She had no idea what "hospice really meant" -- the removal of medications she'd taken for years to help with her Lupus, for example.

Carol's facility was "tired", I'm sure, of our "intervention"; of our calling attention to the violations of personal rights of residents and of bringing to light their medical practices of putting residents on enough drugs to keep them sleeping night and day and not "needing" attention except when the CNA's "got around to it". 

I wonder if my concern she had been waiting over two years for the false teeth they promised, had endured that amount of time going through a "few teeth" pulled each time and my encouraging her to speak up about not having the teeth contributed to THEIR DECISION for her to go on Hospice. 

Last count, she had around fourteen remaining teeth and none of them were the type that provided good "mastication" of food.

Carol was not terminal.  She was not refusing medication. 

We watched the facility end Mom's life. 

We watched the facility end Carol's life. 

Along the way we saw how the Administrators kept the numbers of paid staff down, the residents "out of it" and therefore the expenses down and the Bonuses at year's end always "UP" -- for the selected few.

You and I would be sent to jail for taking as many psychotic drugs as as they put Carol on  but because they were "ordered" by a Doctor, NO ONE SEEMED TO CARE -- THEN OR NOW -- will you and I also go through this "planned death"?

She didn't want to go back to the hospital. 

She had numerous infections. Especially urinary tract.

Sitting in your own excrement and urine for long periods of time and then failure to effectively clean the area is the cause but no one really seems interested.

And so it's now July, almost the end of the month, reminding me of my friend, Carol, gone before her time. 

She was a liability to the facility. She'd started speaking up. 

She wanted answers to questions and no longer accepted as easily or readily their answers.

We were involved and had contacted DHSS.

That was a problem, I'm sure. 

A CNA told us it was. It should be a problem -- but not for the staff, for those in decision making for daily living choices including on site and remote Executives who prefer to raise funds and increase compensation and expenditures for their benefit rather than resolving the daily living challenges of residents.

Carol's Long Term Care uses HIPPA to eliminate any and all communication with friends and family who aren't "legally" appointed as a Medical Power of Attorney.

This includes posting, publishing, acknowledging or advising frequent visitors/friends of the residents of the passing of someone they've cared about, yes, loved, and cared about and for.

We weren't casual visitors or those who lived far away. 

We formed a friendship, a support system and even when times were challenging, we tried, as much as we were allowed and sometimes in ways to ensure safety and well being by going behind their "closed doors" to bring in outside "forces" to ensure our friend was treated fairly, justly and considering her wants and needs.

Who will follow in our footsteps? WILL YOU?  Do you understand the importance of vigilance and oversight?

Don't walk away. Run towards. Stop by often. Or get someone to ensure the safety and well being of your loved one.

Think the facility "guards" life?  Think again. Unless you're more valuable to them alive than dead, you're just a number in the progression of residents especially in the lower cost facilities.

Reality Check: Time Is Finite; Waste Not, Want Not

Dear Sam’s Club,

Here’s an example of how you turn more people away and decrease market share:

My experience this morning in my local Sam’s Club.

“Are You a Plus Member? “

I wasn’t really listening. Thinking about all I had to do today and looking for my credit card after presenting my Sam’s Club “old” membership card which they hadn’t changed when I “demoted” my membership from Plus to “Regular”.

“Not at this time,” I replied.

“Well, I can change that by adding $8.00 today.”

“No thank you”, I replied, “It’s due for renewal in a little over 30 days, I’ll wait until then.”

“You Aren’t Supposed To Be Here Now….”  He said.

Surprised by the negative admonition, he added, “Well, I can give you a one time “Courtesy” pass.” Which he did and which appeared in large print on the screen making me feel really bad about “not knowing better”.

“You’re supposed to be here after 10 AM.”

Really. Must have missed the Memo. But then I don’t shop Sam’s Club “regularly”.

That’s why I don’t get the “upgraded” membership – the extra “kickback”, excuse me, bonus reward, for spending up to a certain amount. No….I have credit cards that reward me without putting constraints on where I shop and with whom I shop.  

I tried the “Plus membership and found it a waste of money. This was before the Home Delivery and other “benefits” now added to the program which I don’t want or need.

I’m a Senior. I’ve seen lots of us in this age group shopping at Sam’s Club, especially earlier in the morning. Of course, for all I know they could be Plus Members. It’s just I notice demographics; it’s been my training to observe, to evaluate and to make positive changes based on various marketing analytics.

When it first opened, “our” Sams’ Club” was “the place” to buy our business supplies, home items, stock our freezer and feed two growing sons who could empty the refrigerator before I could get all the food out of the bags and into storage for, if I was lucky, a few days, before making another trip to what was then a great way to save on everyday items and larger quantities of food and other supplies.

This was pre Amazon and so many others who now lead the way along with other Membership and Non Membership businesses all seeking to retain, build and increase market share.

Sam’s Club Membership is $45 or $100 for Plus

All I want to do is walk through the door of this Warehouse Shopping giant and buy the items I use in bulk and be on my way.

Now, I’m told, my spending is welcome only during certain times that interrupt my morning which for me is an important part of my business day. It used to be 9 AM and now I found out it’s been raised. 

Next thing I know, it could be Noon or later before I’m “welcome” to spend my money in their facility that is mass market, bulk buying with a little bit of regular sized items at somewhat discounted pricing they hope you’ll pick up while you’re there.

For the record, I liked shopping at Sam’s Club; it apparently only likes my shopping there during times they determine and change and then publicly admonish you if you should “violate” their protocol.

I get the benefits concept of the levels of membership; I don’t get the discrimination of shopping times except for the fact having staff come in and opening your doors at 7 AM, for example, means more cost of staffing, etc (I am a business person, after all).

 So…..open for a few, charge for this “benefit” and no longer “card” people at the door to ensure they have the level of “membership” before they load their cart and get in the checkout line?

Poor policy.  Poor procedures. Speaks volumes about the business……

Yes, I work, have my own business and place a value on time and opportunity. We share a car, daughter and I, because we can’t afford two cars and we’ve come a long way in eight years because we’ve lived the lessons of life we’ve known and learned and one of them is to consider how we use what we have and what we are given.

We’ve survived and now we’re returning to being able to thrive and that includes choosing with whom and where we shop and spend time.

I wasn’t interested in the “perks” – not even the add ons for “just” an additional $40 when I was finally able to afford, yes afford, “going back” to Sam’s Club.

Sam’s seems to be equating or trying to become more “niche market” by excluding rather than including the community. That’s a business choice. A model. Poor one. Chosen one. Out of touch.

I always research when I “come up against” challenges like this one. Here’s what I found on the company’s website comparing the two membership levels benefits:

“Early shopping hours  Get in and out faster without the crowds starting at 7AM Monday - Friday (not available at all clubs) https://www.samsclub.com/sams/pagedetails/content.jsp?pageName=aboutSams

NOTE:  Their own website states “Not available at all clubs”. 

And, you’ll notice there is no on line posting about what time we “lesser customers” are allowed to spend “our money”. Wow! Discrimination seems to be changing again and refocusing on new categories.

So….how many of you reading this take the time to read the sign posted outside Sam’s Club door?  Last time I read it Plus Members were admitted earlier at that 7 am time and regular hours were 9 AM for others. Today I saw the 10 AM. Or maybe your Sam’s Club has other hours??

What about that “security” person who stands at the front entry who USED TO CHECK YOUR CARD before you could even enter.  Not now. You don’t need to show it, you just grab a cart and if you have  anything to “return”, they put a sticker on the item but anyone could walk in and look around.

I’d been surprised visiting Costco several months ago when no one asked to see my membership card and then surprised again when Sam’s Club seemed to “pick up” this practice and we no longer needed to “present” the card for membership.

As someone with a degree in Marketing Management – the ship has sailed….and it’s leaving behind many who don’t need to “walk in” to get what they want or need – it can be delivered, it can be waiting for pickup, it can be from many “bulk buyers” and “discounters”.

Walmart/Sam’s Club used to lead the way, were highly innovative and often controversial.

Now, they’re followers instead of leaders.

This lack of customer consideration and service lowers them even further in my opinion.

For the record, Sam’s Club … when we were celebrating a historical WIN in St Louis, you missed the shot.

Not a single St Louis Blues shirt or any other memorabilia was on your tables, racks or in your stacks. While at Costco---they were flying out the door.

I believe I made the right choice when we joined Costco. I was going to renew Sam’s also for the “convenience” – they’re on the way back from where I drive to take my daughter to work on the day’s I use the car. Guess that won’t be my plan any more because it takes away from “my time”.

It’s my choice, as a consumer. I do not see the benefit for our spending even the “small additional amount” which I can use to donate to a local charity or spend on something else we still need and have been putting aside purchasing – even at Sam’s Club.

My time is valuable. Even one hour. I’ll spend part of that time driving a little farther to where, at least from what I’ve seen, I’m still appreciated as a customer, a member.

Interesting how when the major force behind some businesses is no longer involved changes that aren’t focused on understanding what you say, how you say it along with what you do and how you do it, make the difference between revenue generation and revenue reduction.

Two Weeks: Bethesda Meadow Doesn't Respond; Grieving For Carol

Search for policies on the Long Term Care Facility's practices when a resident dies and you'll find varying viewpoints.

All I've read point out how the CNA's and other residents can be greatly affected.

Here's one from the National Institute of Health:

www.ncbi.nlm.nih.gov/pmc/articles/PMC4393773/

At Bethesda Meadow, they hide the event as much as they can. Usually they want the "deceased" belongings cleared out immediately -- the same day or no longer than the following day.

Memorials and mentions of a "passing" are rare.

Do they really think if they isolate residents, those living and dying, they won't be missed?

Carol was deprived from most human contact.

The facility did not take her out of her room but they paid for the rental of a gerry chair (believe the same one was possibly double paid for by Carol and her Roomate as I saw them use it once for each of them) except for two occassions when I insisted she be dressed and put in the chair to be able to socialize.

The curtain between the two beds in the room was almost always drawn.

The door to the room was almost always completely closed or if not completely, closed so far as to deter or disinterest any other resident or even a visitor from stopping by and visiting.

Isolation and segregation from the general population -- not taken to the dining room before she had "frozen" hands. 

No one assigned to feed Carol when her hands became inoperable. 

Given small glasses of liquids she couldn't begin to hold or reach to obtain.

Food placed in her room and aides walking away -- believing she or whoever was visiting would do the feeding.

I know it wasn't her time to pass. I watched too much. I tried to be heard. Many others understand; they've done the same.

Death is a part of life. Death should have its own schedule and not have someone who gives aid and assistance over weeks of providing unnecessary antipsychotics and other medications.

Anyone who loses as much weight as Carol did in the amount of time she did suffers greatly as the body goes through significant stress and duress.

She wanted to eat. We fed her. They did not.

Grief is a part of living.

Dishonoring the passing is demoralizing the living.

Carol's room was filled with her treasures; many had been removed; some we'd given her, hats from trips we took, pictures of us with Carol, were GONE.

No one has contacted us. It's two weeks today.

When we arrived that Wednesday evening, flowers in hand, to see an empty bed -- actually two--her roommate's and hers-- we went to the floor nursing station and the first person didn't even know she'd died -- another employee told us.

No Memorial Service. 

No posting of her picture.

It's as if she never existed.

Close your doors, Bethesda. We'll open windows.

Examining this Not For Profit who must file its Form 990's and can't understand the large salaries given to ten corporate people....

Trying to see where the money is coming from and going to over a million dollars in salaries and "other income" for just ten people-- and that doesn't include all the salaries for each facility including medical/non medical/office and other.

Know they have many Medicaid Beds. That's income. 

Know they doubleshift many workers -- less cost than adding another employee. And, they hire from outside services, bypassing the need to pay certain taxes and other payroll items.

Did you know you can find a Not For Profit's 990's on line?  All you need to know is the general name of the corporation/company/entity and it helps to know the State.

Anyone who believes Not For Profits in Long Term Care provision are barely subsisting should take a long look at the salaries and other compensation and should request -- it's public knowledge -- to see "the books" if they're Not For Profit.

If they're not .... there are other ways to check online their income, expenditures and salaries. In today's world, they can attempt to hide information but it's there and someone can find it.

You're paying the bills -- Medicaid is Federal Money -- where does that come from....your pocket and mine. And that's both For Profit and Not For Profit LTC's.

I called Bethesda Meadow following our finding Carol's bed empty and learned she'd passed and asked if there were any directives on memorials for Carol.

NO REPONSE.

They'd cremated her; she told me she wanted her body to be donated to science.

HOW DID THIS HAPPEN?

The receptionist didn't know. Said they would ask. 

NO ONE HAS CALLED. 

       NO ONE CARES ABOUT OUR GRIEF.

I asked for the mailing address of her only relative to send a note of condolence 

NO RESPONSE.

And why isn't someone asking these questions from the DHSS?  Seems to me without a body there could be no autopsy and with cremation -- evidence is gone.

I've watched so many come and go at Bethesda Meadow.

I've watched as the year progresses and "bonuses" are wanted to be met how cutbacks, eliminations and yes, inactivity for the residents becomes so prevelant.

• Food an animal would turn their nose up at.
• Cutbacks to one CNA per hallway; 2 per floor and sometimes just the 1; so many bed bound, always sleeping, morning, noon and night.
• Significant changes every time their yearly "review" by the DHSS comes around.  The DHSS says they don't schedule it and so it's a "surprise".

Really?  An authorization to operate, a license, that must be renewed within a period of time and the facility isn't aware there will be an "annual visit" for this purpose?

Not what we've seen. It's wall to wall staff and everyone in his/her place, volunteers and others playing games with, moving people around and so much more.

That's not reality; it's a created fantasy land.

If changes are to be made, they will have to come from the grass roots. They will have to rise up through the ranks of people who can well afford "Nursing Home" care at all levels and that includes all prices. 

Most importantly, until all ages form a movement to protect our Seniors as strongly as those protecting animals, the unborn and children, the challenges and the problems will grow for the aging Senior population and those will affect more and more families.

Some stats from the State of Pennsylvania:

https://www.phca.org/for-consumers/research-data/ltc-trend-tracker

• Most people will need some form of long-term services and supports in their lifetime, including assistance with daily activities such as bathing and dressing, because of a physical impairment or a cognitive impairment like Alzheimer’s disease.
• An estimated 70% of people currently turning 65 will require long-term care in their lifetime, and they will receive care for an average of 3 years.
• Eighteen percent of all seniors will require more than one year in a nursing facility.

More stats in the next entry.

Last Rites For Carol

Today is Monday,June 4, 2019. 

Carol passed through this life on Sunday, May 26, 2019,  Aged 72 and just three days before her 73rd birthday.

My last entry I was preparing to leave to visit her. It was Carol's birthday and I felt like I was in "jello" all that day -- a feeling I'd described in earlier writings after my husband passed and my mother.

Time seemed to stand still. I was moving but something was "different". I had no idea what awaited me and even though it was "expected", the cruelty, the thoughtlessness, the didn't seem to give a D... of the facility for Carol as a person, who lived, loved, cared about ... not in their range of humanity.

I'd asked someone to call me from the facility if she passed because I thought they might not let me know but I didn't want to believe they could be so thoughtless, so heartless, of Carol and of my daughter and I.

She didn't.  No one did. No call, no note, nothing.

I went totally unprepared socially and emotionally for the empty bed, the half cleaned out room yet so many "things" of Carol's still in the room, on shelves, on walls. 

I carried a potted yellow chrysanthemum -- another plant that would survive less watering and attention as staff usually ignored and allowed them to die -- like the people.

I can't describe the shock of not seeing her in the bed, usually starring straight ahead, a TV constantly on -- made that way by staff who usually closed the door, drew the curtain between the two beds (hers and her roommate's). She watched whatever they chose. No one to talk to; no one sitting with her. Alone. Isolated.

We had to ask about her. ASK about "the obvious" yet the totally shocking and unexpected discovery of the empty bed, the empty room -- her roommate.....did she pass also?

Walking out. Down the hall. Noticing so many residents sitting in the area where they're now fed. Unusual. There haven't been this many since months before Carol's move into Hospice within her regular room.

Always when visiting over the past nine months or so the residents have been in their rooms, almost all in their beds, asleep or in a dazed state. I've tried to "visit" but they've been beyond just as Carol was.

I believed then and I believe now they were all over drugged to accomodate the choice of the facility to have "low" rates of caregivers and hold down costs.

It will take time for me to adjust to this passing. Yes, it was inevitable because no one stepped in, no person cared enough or thought enough about ensuring the well being and health of someone "that age" -- which is really not old by today's standards.

Carol had become too expensive and she'd found her voice which was even more costly to a facility.

Did I mention when I arrived there was a new "face" at the Reception Desk? I struck up a conversation before going up to Carol's room -- before I knew she'd passed.

A lady I'd not seen before. Turns out she was someone who cleaned the rooms during the day and now was "extending" her shift by another four or more hours, total of at least 12, by sitting at the reception desk.

Where have all the "regulars" gone?  Or have they seen enough or were they "substituted" so as not to be able to see, to talk, to share their concerns?

I have other life responsibilities but I cannot set aside my concerns over the lives of people who enter a place to live only to be reduced to dependency and then dying under strange circumstances.