Crossing Paths of Widowhood

Last time we were together was at her Retirement Party. Time before that was her husband's funeral; a death totally unexpected and sudden. 

We'd exchanged a few on line messages but it had been two years since we'd actually spent some time together talking

I saw her across the room and thought, "she's changed" ...  and "so have I".

Two widows who'd met serving as Board Members for an organization providing needed services to our growing Seniors population. 

She was appointed, I was elected. 

She represented a major company influential in providing services to the entire community while I was elected to represent primarily Seniors who used specific area Senior Centers funded by the State. 

She's retired; I'm actively working. 

My friend had news. She was moving to Florida. And, the big news, she was getting married again!

We have similar interests but we're also somewhat different.

I've not found a want or a need to consider finding someone to spend the rest of my life with. 

I'm happy for my friend when I hear how her life changed when she lost her husband;

She'd taken her husband's death hard. She went to work, came home, fell in bed to sleep. It was another friend who finally reached through and brought her up and out of her depression.

My trauma of Mom's challenges and everything involved as detailed in this blog with the false accusations of Elder Abuse and the Undue Influence of Julia was my focus; that and financial survival without a job and having gone through almost every asset we had.

A son lived with her, he was in high school. Sons are different from daughters, most of them. Compassion and caregiving along with communication aren't as much a part of their "make up" as daughters. 

I am thankful every day my "end child" was a girl. 

Two sons were great. Companions for one another. Boys seem to "need" that when they're young. Like young creatures everywhere they're more physical, more needing "bouncing off" others.

Not meaning to be "sexist" in my statements, just observation of behavior of the majority within the groups and I know there are variations on the "theme" of sons and daughters.

My friend's son is older, he has a job and he's staying here. Her husband to be also has a son, finishing high school, ready to move out, ready to move on, has a girl friend. 

Geography isn't a friendship breaker the way it could be years ago. 

I recall moving as I grew up and not having the "life long" friends of those I met who'd bonded since "grade school".  

I've been somewhat of a loner although valuing the friendships and relationships established along life's way.

My married life centered around my husband, his family and my family, his work, my work, the businesses we built together and being a multi generational family with my Mom joining us when our first child was two months old, and that included our "entertaining". 

We often move through life changing while staying the same.

My friend is having work done on her home to prepare to sell it and buy a Condo in Florida. She went through a list of positives about moving there and they did sound good, I must admit.

She has someone. I have someone. Hers is building a new family; mine is continuing the multi generational family started decades ago.

Our lives move forward in somewhat different directions but the steps along the way have been challenged with that loss, that deep cutting removal. I understand her choices. She understands mine.

Relatively new friends in the measure of days of life brought together through a common interest and now building on another commonality with our life changes.

The Talk: Valuing Aging & The Aged

Aging is mostly hidden from Gen Xers. 

The generation next in line to Care Give for parents and others.

Off on their own, many of them living far away from family and relatives, socializing with "their own kind" they seldom visit or interact with society's "aging population".

A new industry has grown and is booming based on this "abandonment" of a whole segment of our population -- Continuum Care. 

You simply sell your home, move into a "condo" with "all the conveniences" and then advance at an unknown and totally unexpected faster pace into more and more managed care and less and less autonomy and freedom of choice.

OR DO WE?

Depends on how much we have to "invest" in the cost of living as we grow older.

What costs, you might ask?

Well, what does that contract say you're signing? 

What adjustable rates are there for what services?

Is there a monthly fee? 

As that residency "ages" just as you age, who's responsible for upkeep, maintenance and what kind of control do they have over those costs?

Many now advertise they have "stepped care" meaning you can continue to live with them no matter what your mental or physical care needs may be --- NOT QUITE TRUE.

If you require medical care beyond what the facility has available, cannot provide and you cannot provide at your own expense -- YOU MAY BE ASKED TO MOVE OR BE MOVED.

IMPORTANT:  There are no blanket guarantees. Even with Medicaid, the facility Dr and others can "put together" paperwork that can affect the continuation of someone in a specific facility.

REMEMBER:  One of our most difficult possibilities as we age is OUR MIND and how it determines what we say, how we act, what we do or don't do and what functions vary or fail and at what rate.

All ages need to be more cognizant of reality regarding residences and their actual practices and promises.

Each of these "care giving" centers, no matter how they advertise their services, are HOUSING & PROVIDING SERVICES for human beings who lose a great deal of self determination depending on the practices and legal inclusions in contractual agreements AND SHOULD BE HELD ACCOUNTABLE FOR PUBLIC DISCLOSURE OF ALL OF THESE FACTORS ON A YEARLY BASIS.

We brag about how the average life span is lengthening and how we're living "better lives" than our predecessors. 

On a local TV program today, an "info-mercial", a local Financial Planner said the latest figures show the average life span is 86. 

I think that may be a little high but it's still far higher than the age of 65 which was the determining point for Social Security being established as few lived to that point or longer back in the late 1930's.

We have Heart Disease, Cancer, Multiple Sclerosis and that most dreaded of all DEMENTIA .... but ...WE'RE LIVING LONGER!

Who prepares us to "care give" for our aging population?

Who educates us in what it means to grow old?

Who teaches us about aging as a process?

Who gives us the foundation to build relationships and responsibilities with and for those who have come before?

Schools teach us about who "WE" are.

We're taught how to navigate and negotiate through stages of OUR lives basically from the point we enter the educational system until we leave. 

Sometimes we get limited education on working and socializing with others. 

Rarely are we taught the importance of each age group in our society and how important it is to learn about and understand each segment.

We need to teach our children how the world is centered on ALL:  Ages, stages, beliefs, concerns, languages, colors and contrasts.

To educate everyone that aging is normal, to be expected and accepted and to understand what may cause changes along with "aging" -- medical life events like a TIA or stroke, what Dementia really is and how to work with and through the challenges experienced, what accommodations can be made that make life easier and how they can be done and supported by everyone.

It took years for the founder of Paraquad in St Louis to get people's attention to the NEEDS of those with physical limitations and laws passed (like the handicap parking signs so common on parking lots and streets).

We need to grow in tolerance, understanding and recognize it's critical to talk, to plan and to start with our very youngest citizens to educate and develop concern beyond themselves, for others of all ages, stages and abilities -- or lack thereof.

Fear of the unknown starts early. Seeing and not understanding, not asking questions and finding answers causes us to look away, turn away and in the end seal the fate of today's generations and our own.

Quick To Criticize & Find Fault

Interestingly, my oldest son, always quick to criticize and find fault with me, has told me we "never entertained". 

As I look through pictures of so many holidays at our house with all my husband's immediate and extended family; birthday celebrations with parties for adults and children; weekend meals together with the three Grandparents.... I see a family joined together and lots of celebrating and sharing.

I was an only child, my Mom came to live with us two months after our oldest son was born. Long story. Mentioned in other entries. We were a multigenerational family for decades.

So, Mom was a part of these times and a major contributor -- she loved to cook and she loved to bake and it was her way of sharing love, caring and concern.

Oldest son says we "used" Mom. She was a "servant".

So sad the way someone who was not a willing participant, someone who continuously took rather than gave, can try to destroy the good in life, the love in life.

Oldest son wasn't there when his Grandmother passed. Daughter and I were. Youngest son was on the phone.

Mama was in bed, sitting up, off in her own world..... she sat upright, turning her body and moving, constantly moving her hands and her arms. She was "working", she was "doing something" -- she was preparing for something, for someone...... until we told her everyone was there she'd waited for and she could now go and join them ..... and she did.

Two completely different pictures; one from actual history, one from "construed" history to avoid facing the reality of a loving, caring home and a family that worked together, played together and cared about and for one another --- always.

Oldest son was never involved in all the preparation: house cleaning, purchasing and preparing food, gathering special items together and all the work (along with the joy) of "entertaining".  Maybe he is now. 

Maybe he's beginning to learn there's more to "entertaining" than people walking through your door and your "socializing" with them.

He just came, did what he wanted and left -- a guest rather than a member of the family.

We tried. We used the typical parental methods. And, as often happens you finally give up, decide it's not worth the time or the battle and just move forward.

We also had neighbors and other friends come to our home although not as frequently as family who shared our table, came for socializing. 

We didn't sit and watch "the game" as my son does and so many others. We actually talked, we shared and we interacted. 

That seems to be oldest son's measure of "entertaining": people other than family and watching sports on TV together.

From my point of view -- this oldest son always seemed to "disappear" when help was needed whether it was to do a chore around the house or help his Dad, Grandmother or me with something.

I remember so well the retaining wall that was coming apart and needed major work. My husband was the ultimate "do it yourself" person trained as a Boy Scout from Eagle Scout to Order of the Arrow. 

It was "the way" in those days; it was survival through challenging times and it provided other uses for limited funds and time -- just like the clothing I described in the previous entry, Splitting Hairs: Practical and Planned

Oldest son worked for a short time, then disagreed with his father about the construction and instead of working it through, walked away to leave his younger brother and father to manage the lifting of very heavy blocks to levels above both their heads.

He disagreed with the way it was being constructed. So....he refused to help. 

That 's a memory I have of him --- "my way or the highway" from his teens until today.

Truth be told, he was the one who usually "avoided" the household work and maintenance; the "bookworm" and "computer geek" with school, activities and so much more!

The younger son was more willing to help, more available and more concerned as he still is today. 

We form our traits young; we are who we are and sometimes even the best parenting produces different types of people. 

Compassion, consideration, owning mistakes and taking responsibility describes today the younger son and our daughter and lacking in the older son, unfortunately.  

I often wonder how two sons with exactly the same opportunities and possibilities including education, activities and support, can be so very different.

I am blessed with two of three who listen, learn and share.

I have ongoing contact with three of my eight grandchildren; oldest son "removed" that "privilege" several times over the years. This latest event is going on its fourth year. More in another entry.

To those of you who understand from personal experience my concerns, feel my pain and heartache, please understand the importance of not always giving in to injustice and to those who would set aside right and do wrong.

His children grow older. I have these writings and I know my daughter and most likely my other son will carry the truth forward although I believe it will be my daughter who holds her older brother and his wife accountable.

Splitting Hairs: Practical and Planned

Death is a great separator. 

It separates people, places and things.

Temps are over 100 degrees so it's a perfect time to clean the closet closest to the front entry used for holding family coats and a few other "miscellaneous" items.

There they were. His coats, jackets.

More than pieces of clothing, memories hanging tightly to places and times past, never to be again.

Attached to his body before, attached to my memory now.

Pieces my oldest son would probably criticize as "costly", "branded" and other faults would be described.

He'd had similar clothes. When he outgrew them, some pieces were worn by his brother and some were passed over to my sister-in-law for her two sons. And, probably, they were passed even farther. 

Costly? Cost effective.

Almost always our clothing was on sale and chosen because the brands were well sewn, good material that lasted and style proof, meaning they withstood many years of wear because they weren't chosen to be "of the moment" but chosen for service, durability and long term savings.

"Splurges" were those special pieces, often those "memories for a lifetime" and even then, sales and special offers were always where we started and usually where we purchased.

Investment pieces we jokingly called our clothing but the truth was they more than paid for themselves in the small extra amount we paid at the time. 

Yes, we all had a few unique pieces, more trendy but basically it was basic -- a lesson I'd learned coming from a cold water flat, a father who drank more often than he worked and held down a job and a mother who stretched and made do and taught me how to do the same.

Now, I touch the leather jacket, folds in places where it draped on his body, the body that went from being so strong, so capable, so ..... to skin and bones as the MRSA, the medications, the inept decisions including making an incision causing more challenges and eventually the end of his life took their toll and he was .... gone.

We bought it on a trip. It was Summer....in Florida....at Disneyworld. A shop on their Main Street was having a really deep discount sale and this jacket caught my eye. 

My husband had admired one on someone but he, like me, never really said "I'd like that" or "I'm going to get one like that". 

Our family, our businesses, our needs to be met came first. Although from the outside looking in, people, especially oldest son who now says everything we did was wrong -- and dramatic ups and downs from every seven to ten years in vastly changing economies we're now just beginning to "discuss" as great factors in saving and spending -- added to our need to juggle, be creative and innovative ... always! 

And, there was our major decision to provide our children private school educations from pre school through college as each one showed special talents and abilitites we felt would best be served with specialized education only available through that choice.

My husband's "rain coat"; outer shell for Spring and Summer, inner lining made it go fairly far into the cold and wet seasons of Fall and Winter. Practical. Washable. Wearable. Casual when needed; professional for most often.

A longer heavier coat he wore to Church, for meetings and for funerals. He was a handsome man and we went well together -- or so we were told and pictures reflect.

The weight of removing these and other pieces from the closet to look over, decide if they should be kept or given away as many other pieces of his clothing -- to be used by others, to be passed on now that he had passed from walking this way and gone another. . .

It still takes me a great deal of time to "go through" things. Many I'd hung up, put away or given a few pieces to our sons, kept for our daughter and, for myself, or given so that others can benefit from the life of someone who lived the Rotary Moto "Service Above Self" and who lived with me the life of passing along to others, giving and sharing, caring and taking care of those who are in need in family and community.

Time to get back to the work of splitting hairs -- looking through clothing and other items and deciding which to keep and what to give away. 

Sometimes it's exactly that -- with an item that could be kept or could be given away -- and I choose to put it back, for just a little while longer, until another time when I can perhaps move from splitting hairs to making practical and planned decisions as I've learned.

ICSA International Conference: Undue Influence Rising Worldwide Challenge

Recently attended an International Conference with my daughter with an organization that has existed since 1979. 

It was founded during a time when Baby Boomers were young and many were "Flower Children" following cults and their leaders and new groups were being formed that we recognize today.

It's acronym is ICSA and when you first read the name, you'll probably think of turning away from it or considering it's a group "on the fringe of society". It's neither. 

Click through here to learn more about this organization working to raise awareness about groups and individuals with personal control agendas.

ICSA recognizes Undue Influence. It also talks about "mind control". Basic words, old thoughts, still actively practiced by groups and individuals looking to profit, to gain and to succeed to influence, manipulate and control.

Having experienced Undue Influence through the woman who came into our life during our challenges with undiagnosed and then diagnosed Lewy Body Dementia, I was looking for answers and input from others who had been affected and by those who are seeking to protect the rights of all not to be taken advantage of and not to be led down paths of self or life destruction.

My generation, daughter's generation. 
Little has changed.

Then as now, there were also movements to control, to manipulate and to take advantage of individuals looking to create a better world, a place of peace and caring about and for one another.

To quote lyrics from a popular song by the Beatles "Yesterday, all my troubles seemed to far away....oh, I believe in yesterday". By the way, we're just really beginning to understand the Beatles lyrics often had hidden references as in the song they wrote about the Guru they followed.

Those who would influence have simply moved on to one-on-one and can now use the Internet to influence and control; they don't need direct contact, isolation and deprivation of food, family or regular life inclusions.

There were movements that had been started in the mid to late 60's by individuals and groups who believed in the same standards taken up by the Millenials, many of whom are the children of the Baby Boomers highlighted at the conference and there were papers presented by PhDs in several related fields from highly reputable resources both public and private.

You can read some of these papers on line. Next year their International Meeting will be in Philadelphia; its a worthwhile attend for people in the United States, especially those near the Philly metro area. 

Attendees this year came from the United States, Canada, Argentina, Equador, Peru, Bolivia and other South American countries, Japan, China, France, Germany, Netherlands, Poland -- to name a few areas represented.

There were first and second generation individuals affected by cults, individuals and groups. Some were members of families where their children had been "captured" into beliefs years ago that still separate and alienate the child from their family members. Many were professionals with Masters and PhD's and even attorneys who attended and spoke.

ICSA is unique in how it brings together former group members, families, professionals and researchers. 

When I heard the words "undue influence" and "mind control" I felt relief someone besides my daughter and I were aware of these actions taking place and how they are growing and how some countries are putting in place ways and means to counteract individuals and groups who would split apart and separate.

We, as a family, faced one person who used "the system", including a professional accreditation, to discredit years of close and caring relationships for personal benefit. 

At the conference, we heard stories from others, in presentations and around dining tables when we met afterwards, of people with similar and related challenges with undue influence and mind control.

I am more convinced than ever the challenges of raising awareness of Lewy Body Dementia and Dementia as a classification rather than "segmenting" and "separating" this medical challenge is critical.

As our older population grows and our technology increases to allow more means of connecting, so also grows the ability to deceive, to manipulate and to control.

It's a worldwide challenge. We in the United States should be taking the lead and instead we're dragging our feet and falling behind.

Developing A Compassionate Culture

Today, it often takes a prominent and influential individual or group of people to make changes in our lifestyles in the work place and at home.

Just read an article in Fast Company, a magazine I read almost from cover to cover along with many others in the days when magazine subscriptions were part of my worldly capabilities to purchase and pursue. 

Online ability to read, to listen, to view, has been important to my well being as it keeps open access to information now and especially when we were unable to spend an additional dollar let alone the cost of a magazine or even the gas that would be used to get to a library.

It references Sheryl Sandberg, CEO of Facebook and includes her loss of her husband suddenly on vacation in Mexico in 2015 at the age of 47. 

Shock and awe. I understand. When death is the last thing you expect or believe will happen, you are set spinning or as I've stated in several previous entries in this blog, feeling like you're moving in "jello" every minute of each day.

Yes, you adjust -- in time. You continue to move forward. 

What you learn is what it means when you "directly" have an experience just isn't the same as hearing about a friend's unfortunate loss or an unrelated extended family member.

It's like watching anything happen, hearing about it as compared to having it happen directly to you; there is a distinct and more impactful experience.

Here's the web connection


Facebook, let's hope, is leading the way in creating work environments understanding we are not just "company" focused and they are far the better for our being human as we bring feeling, emotion and with it respect and consideration for what we do and how we do it.

Now, Ms. Sandberg, please take a deep look at other "policies" within your organization and view them from a more "personal" angle. Your employees are great assets when treated humanely.

All of you who live without truly thinking about the "human" side of life, the reality of the full scope and depth of being human, stop....look....listen. 

Develop a More Compassionate Culture.

Building Bridges

Caregiving often separates families at a time when coming together is in the best interest of the unit.

Scenerio:  Two or more adult children. At least one lives nearby and the rest live far enough away they cannot participate in daily care giving.

One or more of those close by "take over" or so it is often seen by the others. 

Even in our high tech world, being "on site" can provide a higher level of involvement simply because of the proximity to the challenges.

Involved with families and careers the caregiver/caregivers now add another layer to their already multilevel lives as they continue to learn, grow, experience, want and need.

Suddenly (or not) their time and talents are needed. To some it may come as a surprise; to one or more, it's a progression they've seen coming or due to illness or medical emergency had thrust into their lives.

How do you manage? 

What's most important? 

And if your family unit already has challenges in its functioning, how does the main caregiver or caregivers work around and through the family dynamics that continue to diversify and extend?

How Do You Build Bridges?  Open for discussion.

Serving Our Seniors: Join The Movement

SOS -- Serving Our Seniors.

A term I wrote in a blog entry a couple of years ago.

Daughter and I practice this concept as often as possible. 

She has a 9 to 5+ daily work schedule and challenging job but still found time to visit with an older woman who was new to our area, was living on her own in a condominium, had family in the area with busy lives. 

Sadly, her time ended when the woman passed unexpectedly a couple of weeks ago. It was as though an immediate family member had passed. Although I didn't visit her regularly as my daughter did, I feel the loss, the change, the difference.

We traveled by car for six hours one way to attend her Memorial Service. 

We met members of her family and friends from her childhood.

A small chapel service. Some pictures displayed. Children and grandchildren. 

A celebration of life and love and we were fortunate to play a part in the story.

I have a friend I made at my Mom's Long Term Care Facility whom I write about occasionally in this blog. 

I work and I'm involved in community projects and have been as long as I can remember. For me, reaching out, being there and making time are most important. 

Yes, family and friends are important; it's the definition of these relationships that makes the difference in our lives and the lives of others.

My friend has no family in the area although this was her "home town" growing up. 

She has others who visit her but she calls us her "family" here. 

Daughter and I try to spend each holiday when we're in town with her sharing a meal, participating in activities -- whatever fills her life with a little more joy for the moment she can carry forward in the days ahead. 

We also visit at least every other weekend and sometimes take her a favorite "take out" meal or I make a dinner and we share it under the trees or in the gazebo if the weather permits.

I also try to make sure she has the "little things" that make a difference. These were the items we had so much difficulty providing to Mom/Grandma as we struggled to stretch every penny from the losses we incurred after my husband's medical challenges and passing.

I remember when I was many years younger writing in a book I kept, "It's in the giving, we receive." 

Believe it went with a poem I wrote and know it's also a quote from St Francis of Assisi. Years later I would have the privilege and opportunity to visit the small chapel and town where he lived.

Life gives us many gifts as we move along the path.

Yes, I know you're busy. That probably won't change.

But, given the opportunity, I know you can find or make time for many things. It's what we choose to "make" time for in life that set our pace and direct our path.

SOS - Serving Our Seniors is a way of life you can choose and can do in many ways. We're all moving foward. We're all changing. Who will be there for you when others cannot?

ReHab: Truth & Consequences

I heard it again the other day when visiting Mom's previous Long Term Care Facility about no Rehab being provided even though a resident had received a Dr's orders for this service.

A "new" resident had arrived about a month previous.  Her husband was distraught.  They specifically chose the LTC becasue it had "on site" Rehab care.

He'd expected his wife would begin receiving rehab care immediately because it was "on site".

The husband was given every reason you can think of including the paperwork hadn't been processed for her "total" admission, the paperwork from the prescribing Doctor wasn't complete or certain Insurance information wasn't forthcoming.

Now, they're not sure exactly when the facility Dr will order the Rehab due to so many delays. Meanwhile, his wife's capabilities are decreasing below what she arrived at the facility having from her medical challenges and, of course, that means her "ability" to "go home" is far lower than when she first arrived.

While rehab may be the best course of action, because it is a medical decision, there are other factors entering in to whether or not your loved one receives physical/occupational therapy.

Our experience was if Mom didn't go to the "rehab floor", she didn't get rehab services or if she did, they were long in coming, short in duration and often didn't involve using the Rehab Facility on the lower level.

Our experience with my husband wasn't any better.

I chose a particular Long Term Care facility specifically because they advertised they had "on site" Wound Care and was assured in an interview they knew about my husband's condition and needs. 

I'd discussed at length the challenges my husband faced with an open wound and the skin constantly rupturing on his abdomen opening a second and sometimes even a third area needing to be bagged and providing a constant "collection system". 

He needed round the clock care and someone who knew about infections and wound care due to the high risk for infection and complications.

We chose to enter the facility. We saw a couple of days of really good care. Then it was downhill all the way. 

ONE person was trained. ONE person did not work round the clock. ONE person did not stay with the facility and left during his rehab period. They ran out of bags. I had to run to get more because they couldn't order more -- for whatever reason. Infection became a constant challenge.

This is the reality of Rehab in Long Term Care Facilities. This is the everyday experience of thousands of people nationwide. This is a contributor to the "short" life span of living in a facility versus living with family.

What happens is there is usually someone, one person, trained in wound care or other more medical forms of care in a facility. If they have a day off, if they take a vacation or IF THEY LEAVE the facility, your trained and knowledgeable provider of specialized care is not there and severe complications can occur.

Going back to the man and his wife's situation not receiving Physical Therapy:

In this case, the man's wife left the hospital with Dr's orders for rehab requiring a Physical Therapist and possibly an Occupational Therapist. 

It's also very simple mathematically. Dr prescribes, Insurance doesn't pay or pays limited amount, facility doesn't provide or provides less than needed for adequate recovery.

Once you return to a facility, your Dr in charge at the LTC takes over.

The challenge is the on site Dr can change, reverse or even eliminate that order and once you're "back in your room" the chances are strong you will not get into the REAL Rehab unless you leave the facility and return via the "special services of the Rehab floor".

My advice: if your loved one needs PT/OT, get the "prescription" in writing and you keep a copy. It can be your leverage and your evidence. 

Keep a journal. Take pictures. Use the tools we now have in starting a blog or add to another blog like this one your personal experiences and challenges.

The husband doesn't know what to do.  I told him about the Ombudsman program. 

WHERE'S THE OMBUDSMAN?  A program that's grossly understaffed and overworked. 

A program relying on Volunteers and few paid workers because your State has earmarked funds that should go for this purpose to other "more necessary" programs.

Federal Law gives us this advocate. Why didn't this man know about this service? Probably the same reason so many don't know about it -- because it's not effective, is poorly funded and cannot possibly do the work for which Federal Law was passed to ensure it could.

Why are we all so very uninformed when the time comes to make decisions for our loved ones regarding "outside" care and services including Federally Mandated and supposedly State provided protections for our aging population?

Where's the posting in the facility stating if you have a concern this is the telephone number and name of the Ombudsman for the facility to contact.

Not in the elevator along with other promotional signs. Not in the main area where visitors arrive. 

Not in the dining room.

Not in the cafeteria.

Nowhere prominent, nowhere you and I can be reminded there are others responsible for our aging population.

It's not there because there isn't one "assigned" or permitted by the facility to make frequent visits to talk with residents.

SIGNAGE is limited to "acceptable" communications.

SIGNAGE is used as Public Relations and anything about the real "rights" of residents would be a negative message.

What is posted? Featured in the one elevator on the back wall are announcements of upcoming "special days"; reminders about the on site extra pay "massage therapy"; gentle reminders how "Mom" would love to visit the Beauty Salon. An occasional reminder of a Family Council meeting.

The Entry Area 

Announces an upcoming "event", a luncheon where "guests" can attend for a price. 

Provides a prominent area for a display honoring our Veterans and on a "pole" facing the dining room are pictures of residents who served.

A Common Room

A room used only by facility employees for "training" and occasionally used for "approved" small meetings contains one computer never used by a resident as it's "off limits".

The system of US Health Caregiving for our aging population is greatly in need of a thorough and effective "house cleaning".

Our elderly who do not have extensive medical care and who must rely on policy's that "change" or become "reduced" are suffering as much or more than we who are coping with losses and reductions in provisions of health care. 

You and I must be constant advocates. We must be informed. We must know the rights of our loved ones and we must ensure these rights. 

You and I, everyone who care gives or cares about our aging population, needs to frequently and continuously take action on behalf of those who cannot speak out or act on their own.

You and I cannot age without advocating for Seniors in Long Term Care Facilities. 

People think there are "systems" in place, there are "funds" for them when they reach this stage in life.

NOT TRUE!  Investigate. Research. Learn.

Finding Senior Care Help

True or False:  There's great help, assistance, guidance and resources for caregivers and people with Dementia.

FALSE. 
The help comes with many strings attached and for us some of the strings have been:

(1) Knowledge of where to go, who to talk with and what to ask.
(2) Qualifying with some agencies and organizations
(3) Being in the right place at the right time which often means before the group, organization or agency's funds for a specific program or offering runs out
(4) Funding for programs, including Meals on Wheels,        mandated by Federal Law is left to each State to fund. 

I watched as Missouri's funding was reduced by 1/4 one year. Served as an Elected member of the Board responsible for

managing distribution of State provided funding.

The need had grown exponentially as the population continued to age.

That's a large number of elderly men and women who could not receive a daily prepared meal.

True or False: Family Caregivers are supported and encouraged.

FALSE. Most of us don't get time off from work for "Elder Care" unless death may be imminent. 

Friends often pity the family member and other family members often believe you do such a good job, they couldn't do as well and so they turn away, walk away or stay away. 

Some family members even believe you're "abusing" their parent especially when they only talk with them on the phone or visit once a week, once a month or even once a year.

True of False:  Caring for a loved one in a facility is much easier than care at home. Sure, it takes some time but all you have to do is visit once in a while because the residents are "taken care of" and "safe" in a Skilled Nursing Facility.

FALSE.  The laws, rules and regulations are wide statements allowing for various interpretations, on the whole. They are businesses, first and foremost, almost all of them are operated this way. If you find an exception, it probably has no vacancies and a very long waiting list. Facilities love it when you don't visit, seldom call and generally "turn over care" to them. Broadens their abilities with residents who can easily be led when no one is there as a "sounding board" or to question the facility's actions or decisions.

WEBSITE:  Here's a website for Missouri for checking out the broad base and limited spectrum of areas covered by the Department of Health and Senior Services regarding rules and regulations for Skilled Nursing Facilities and others. Each State is required to have this service. Google and find yours.

Remember to read realizing the statements provide loose ends, open interpretations and limitations on specific, itemized or detailed entries and instead allow large ranges, self interpretation and circumvention:
http://health.mo.gov/seniors/nursinghomes/lawsregs.php


True or False:  There are systems and checks and balances in place for any question or challenge you face and especially if you feel your loved one is being neglected or abused.

FALSE. From the Department of Health and Senior Services through the Ombudsman program, help and concern about significant issues and problems depend on the person, the time, the money allocated to the program and most of all to the laws, rules and regulations of the State in which you live. 

It also depends on staffing. In the St Louis, Missouri area, the Ombudsman Program, known as "Voyce" has huge turnover in staff, is underfunded and usually has less than 50 people to visit multiple hundreds of facilities.

With the DHSS, depending on where you live, in Missouri, their workers don't need to be Social Workers or MSW's or even have attended college. They can come out of working at McD's, take a test and become someone who fills out paper work and makes decisions about the lives of our most valuable Senior Citizens including determining their "capability".

Social Workers in Long Term Care Facilities are often non participatory with families and although supposed to be advocates for the residents under their "supervision" seldom are given authority or respect in the care giving and care planning process. 

Unfortunately many practitioners within these agencies are ill informed, grossly undereducated or mis-educated and they actively spread their inabilities through writing reports and submitting evaluations of individuals with Dementia that they fail to recognize either for its existence or actual stage of development.

THE REAL ANSWERS TO ALL THESE QUESTIONS ARE HOW INVOLVED ARE YOU WILLING TO BECOME AND HOW INFORMED?

Laws may be there but unless you are willing to make your voice known, present documented (generally pictures speak volumes) information to the highest level of authority, usually the DHSS, the problems you're experiencing will only continue. 

Visiting a Long Term Care Facility is challenging -- think about what it's like if you can't walk out the door you walked in when you arrived.

Touchstones: Renewing Acquaintences, Renewing Life

Ever watch a top spin? Some stay in one place, some move a little and some appear to be out of control. That's the life of a caregiver. That's the life of someone watching a loved one in the process of end of life.

Two people came into my life once upon a time. In different places. For different reasons. We arranged to meet again. In a familiar place. To catch up and to renew our friendship and one another.

How long did it take you, one asked, to move past the "jello like" existence I told her about. Then she surprised me by being so accurate when she asked "Three to five years?". How did she know? 

She knew it wasn't "getting over", it was continuing to move forward. It was facing new challenges and building ways to get under, over, beside and between those that kept me held steadfast within the boundaries others had made for me.

I didn't talk about how I have a few remaining personal challenges. 

In passing to one I spoke about my oldest son and his belief I had emotionally and financially abused his grandmother as Julia claimed to the DHSS and put my life and his sister's life into an out of control spin -- like that top I wrote about earlier.

Julia set so many out of control actions in place and so many devastating results. 

I didn't share with my renewed friend what decisions I have to make and how they have torn me apart for so long. I haven't had the courage to speak up and speak out. Why? Why not?

The first reaquaintence didn't caregive, or at least didn't mention she has. I have the feeling something she didn't mention obviously compared to what I had experienced to be so accurate in her calculation.

Three to five years. Sounds like a short time -- in the span of life -- when you say it.

Three to five years day to day, hour to hour and minute to minute when you're constantly facing a road of life that falls out from underneath you and drops you into a chasm, a crevice or what seems like a bottomless pit, seems unending and unchanging.

It ends. It changes. It's not the same. Ever again.

Lives are in constant motion. So is death. We never know which way we're headed or what each will bring in its wake.

Yes, I can recall that time. Strange how some parts seem to have slipped into a past tense that is harder to recall, more difficult to completely explain. 

Time changes things; time changes people. Time renews. Time replaces.

I reconnected not just with two people but even more with my "self". 

This journey I've been on and continue to believe is just a few steps farther, a little longer than expected and perhaps one that will be ongoing for the rest of my life is easier when shared.

Fed & State Govt Requirements Long Term Care Facilities

I find information and documents many people never do and I choose to share to enable more people to see what is generally hidden under layers of inaccessible "red tape" when it comes to Long Term Care facilities and living.

Here are some recent examples of information I've found trying to discover what is "on the books" of the federal and state governments regarding Long Term Care.

It seems to me this "business" of caring for our elderly has far more projects researching and formulating reports than it does truly providing for our older population who must or choose to live in Long Term Care/Nursing Home facilities.

Wonder what percentage of the yearly budget for the DHSS is spend on researching what "should" be done and what "could"be done versus enforcement and ensurance residents of Long Term Care facilities receive quality care.

Federal Government guidelines for State Operations of Long Term Care Facilities:

www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/som107ap_pp_guidelines_ltcf.pdf

State Operations Manual Chapter 7 - Survey and Enforcement Process for Skilled Nursing Facilities and Nursing Facilities

State Operations Manual Appendix P - Survey Protocol for Long Term Care Facilities - Part I (Rev. 156, 06-10-16)

This is a 104 page document. Use it for reference. Use it to become knowledgeable about the inclusions and limitations of Long Term Care Facilities. Use it to compare information you find on the State where you or someone you love will enter into Long Term Care.

The above is only one section. Use the reference to find the other sections. 

What's interesting from a "public" point of view is how the entire document is broken apart into sections and how it's difficult to find the document in its entirety almost ensuring the general public is unable to access.

COMPENDIUM OF RESIDENTIAL CARE AND ASSISTED LIVING REGULATIONS AND POLICY: 2015 EDITION  6/15/2015

Can't find a later edition; this may be the latest, may be produced every other year or even less frequently.

https://aspe.hhs.gov/basic-report/compendium-residential-care-and-assisted-living-regulations-and-policy-2015-edition
n &rep=rep1..

This last entry may be one of the most important. Check it out!
LONG Term Care Justice and Advocacy

http://canhr.org/newsroom/newdev_archive/index.htm