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

Missouri Has Someone Listening. Yea, MizzouRah!

People are reading this blog and people in places where changes can be made are taking effective action -- at least in Missouri.

Hey! Fellow Missorians, check this website out:
http://health.mo.gov/safety/showmelongtermcare/index.php

What's the difference? The State used to follow their guideline used with Long Term Care Facilities and only provide a current year's listing of their visits to each facility.

Now:  There are five years available.
One year reports can make a serious offense invisible as it "dissappears" beneath the layers of the months as they progress. 

You and I need that information when we need it, which can often be with little warning as a Dr releases a patient from the hospital and says they shouldn't be "unattended" or need 24/7 care giving.

You and I need to see how facilities actively and continuously remedy any and all infractions of State Laws on Nursing Home/Long Term Care and NOT just in the few months that follow a report.

NOW, MISSOURI, ANOTHER REQUEST:  Let's provide an easy to read, at a glance, comparison listing of those areas on the report so we can really see the "progress" and the problems.

No PDF format where each year has to be opened separately and makes comparing and seeing the true picture of the care giving practiced at any facility.

TIME FOR MANDATED COMPUTER RECORDING also of 

patient's administration of medications and personal care along with all notes from Doctors or Nursing Staff concerning the patient. 

MOST IMPORTANTLY:

In the real world, Mom wanted me to go with her to the Dr. She knew I cared about her health and well being. She wanted support and someone who truly cared about her and not just a medical person who "worked" with or for the Dr.

Never possible at the facilities where she spent the last three years of her life. Even though arrangements could have been made for a family member to attend, we were never consulted.

The State required "conferences" seldom included any actual paperwork presentation let alone a written plan of care. 

VERBAL. EVERYTHING WAS VERBAL. 

In many facilities, Dr's visits are not regular, not even scheduled. They come to see who they can when they and "just inside" what the law requires them to do or what they feel is necessary to avoid "medical malpractice" possible charges.

The Dr should be obligated to have a conference with the family member or other responsible party to ensure the Resident is receiving the highest level of care possible.

HERE'S ANOTHER ONE "FOR THE BOOKS":

It's time we spoke out about the lack of privacy given residents of Long Term Care/Nursing Facilities.

I don't want to see a patient's top or pants pulled down or opened at a dining table or any place where they are in view of any other resident, visitor or worker. 

Residents deserve dignity. 

Would you go to a Dr's office where everyone was in the same room, men and women, and the Dr reached under your garment  to listen to your heart or the Nurse pulled your pants away from your body to give you an injection in your side? It happens.

Let's Get Mandated Computer Recording and Reporting of Resident Reports and mandated printouts for meetings with the resident that are provided, computerized and available for comparison and ensuring actions have been taken and challenges resolved.

It's time to expand the information Federal & State Law requires to be provided to the resident or kept in records basically under lock and key and you have to move mountains to gain access.

Safety, security, quality of life, are not words and a phrase, they are what each of us wants for ourselves and for one another. We take pride in all that we have in the United States yet we ignore what we don't have, what we don't provide and what we believe we cannot fund.

Being institutionalized as a Senior should not be imprisonment.

Thank You! This Blog Is Making A Difference in People's Lives

This is a very focused website. By that, I mean, it's not on a subject nor does it have content large numbers of people would search for and  would generally pick up to read.

We should, of course, we're all aging. We're all facing life challenges and being prepared, having knowledge, working now to ensure a better future for times when we cannot work in this way.....

This being said, I am so grateful you and others have made the time to find this site. To read the entries. To understand my quest to share knowledge and to help others who caregive, who deal with life and death. 

As I write this entry there are over 18,900+ page views and adding more each day. Thank You! 

I see my journey of sharing our challenges, our misfortunes and our exploration of possibilities to raise awareness and be an agent of change is making a difference.

I continue to go on line, revisit various websites I've mentioned and find THERE ARE SOME CHANGES that have been made.

It's a start. We need to get to the finish line: transparency, immediate and accurate information provided to the general public and information provided in a clear, concise way that uses modern technology to give accurate current information along with accurate historical information.

Baby Boomers are on the front lines of caring for Senior family members and friends, the Gen Xers and Millennials are walking in our footprints. 

Last night at a special showing of the new movie, which I highly recommend seeing, "Going In Style", a theme interwoven is the responsibility of world societies to ensure the care of their oldest members. Laughed and laughed while seeing another wonderful theme -- aging is natural, aging opens doors to new opportunities while bringing more value to life and living.

What I loved about the movie was how it showcased the "real" Senior population --

• Often living long distances from family members
• Keeping or initiating new relationships including finding companionship, and yes "relations" -- so much is made today of "ED" everyone thinks you're incapable and not interested as you grow older and so glad to see this movie shows these concepts are myths perpetrated by a society who isolates itself from seeing the reality of aging is caused by a society that focuses inward instead of outward.
• The self focus of corporations and businesses who value only what is best for them, not considering those who gave them this opportunity through years of dedication, hard work and often health problems associated with the job

Gen Xers really need to go. Many are self absorbed and need to get out of their own lives and see the real world around them. Get involved like many of the Millennials. 

The challenges we resolve benefit all the generations giving everyone more freedom, more peace of mind, and above all safety, security and a higher quality of life.

As is my practice, sharing information, raising awareness is the goal of this website. 

Across the board, it's about Lewy Body Dementia, families, caregivers, life and living with Dementia of all types and our experiences to enlighten, assure and be agents of change. 

WARNING: Hidden Facts & Figures Endanger Seniors and Families

How transparent is your Long Term Care facility or the facility you're considering for your loved one?

Where is the DHSS report located? This is the mandated report done at least once a year or more depending on your individual State's laws, rules and regulations.

Although most states require only one year be "on display" or "readily available" -- a good facility should easily be able to provide, hand over, any time of the night or day, the past five years of their reports. 

Some states, as Missouri has finally done, hopefully because of this blog and a lot of "beating the drum" for reform and transparency advocating for Seniors in Long Term Care, Missouri now provides five years of reports on line when they previously only provided one year.

STILL NEEDED:  A much easier, at a glance, compilation of recurring violations especially, to ensure the safety and well being of our Long Term Care residents.

Where are the hours posted for the various members of the Administration and Management Team? 

Where are the days and hours of the Registered Nurse and her office/location posted?

Where, at a glance, in one specific area can you find, without having to ask someone, all the information regarding the rules, regulations, guidelines, practices and procedures if you have a question, a concern and/or an interest in volunteering?

Where, besides in a distributed flyer, usually provided to a resident and who, depending on their mental abilities, could misplace or lose, is there a listing of upcoming activities where you can visit and become involved with your loved one? How up to date and accurate is their website? How visible and viable is the information ?

When there's a meeting for residents and/or for family members aka Resident's Council and Family Council, both of which, by the way, are parts of State Statutes and Federal guidelines, where is this information posted -- is it in an area everyone can see or limited to posting in an area some might see but others might miss?

On the web, how easy is your State's DHSS posting of the violations of each Long Term Care Facility, the reasons for a visit, the infractions, the challenges found, the remedies required, to read at a glance? Or do you have to sift through pages of information rather than a straight and easy Excel type spreadsheet with click throughs to obtain more detailed information?

Does your State have a standard contract for Long Term Care? One that ensures and protects YOU and your loved one? Let me know if you find one; I've spent time since 2012 trying to determine the answer to this question and not finding any.

It's time these "businesses" who have been given so much ability to control what they do, how they do it, are held to a higher standard. That will involve all of our efforts to be united in gaining more transparency and more accurate reporting of what is done, how it is done and by whom.

WARNING: YOU MAY BE FINANCIALLY RESPONSIBLE FOR COSTS INCURRED IN REHAB AND IN LONG TERM CARE.

In admitting my Mom to one facility simply for Rehab services, reading the contract fully I found a small group of words that with my signing OBLIGATED me to pay for any and all services used or requested by Mom that were not covered by her Insurance. 

It was inserted within one of pages of paragraphs and if I hadn't struck it out, would have been paying possibly and potentially thousands of dollars, depending on what was deemed "necessary" for her care. 

With Insurance companies, Medicare and Medicaid paying less and less, not seeing this small entry could have been devastating for all of us for many years to come as it would have been a debt incurred through a contractual agreement. 

Why is it so difficult to find out what the basic requirements are in each State for Long Term Care Facilities/Nursing Homes?

I've spent a large part of the time since discovering Mom's Lewy Body Dementia in 2012 and writing this blog trying to find information that is clear and concise, where records can be openly obtained for comparison. It's an ongoing challenge.

I welcome any referrals to specific sites where you have found clear, concise information to pass along to those who read this blog.

In Mom's facility, just getting a list of the Doctors was a hassle. Once we agreed to a Dr, changing that Dr was long and tedious and both the Drs had to agree. Since there were few on the list, we were limited and some simply told us they had "no openings" at this time.

And, when a Dr "leaves" the facility, for whatever reason, you, the family member, are often not told. If your loved one is competent enough to notice, they may tell you, or they may not. Changes to medications, procedures, advisories and many other factors can occur with a change in medical staff and the resident and you should know when changes are considered or made.

If you go to/went with your loved one to Dr's appointments, as I did, you realize they often cannot follow the conversation of a Dr (you and I often have challenges in that way and have to ask a lot of questions) and the older the person is, they often DO NOT question, do not ask what other choices can be made or options there are. 

It's my belief a resident's rights should be ensured, not taken for granted.

For those of you "new" to Long Term Care, please don't assume you'll have connectivity directly with the Dr as they "value" their time and allocate a small amount to actual "on site" visits with a great deal of "phone" analysis, determination if and what level of medical intervention should be taken from information gathered/presented by the LPN/RN who calls.

Even when a resident is dying, the Dr doesn't make "house calls" in most facilities.

You can read the laws/statutes for Long Term Care/Nursing Home Facilities, on your State's website, however, these are the "general" rules and then there are the "specifics' -- for example:  how many hours of "nursing care" are required per resident during a 24 hour time period adjusts with the time of day and often does not include any consideration for the actual lefel of care giving that needs to be done due to the physical, mental, and emotional needs of the individual resident.

The very definition of "Nursing Care" is also open to interpretation. It does not always mean a Registered Nurse or even a Licensed Practical Nurse providing any form or amount of direct care for a resident.

Nursing Care includes administration of medications BUT it can also include the amount of time a Nurse spends in completing records. There is no additional contact or service provided the resident, however, there is service provided "for" the resident and so it counts and usually reported in 15 minute increments, not the actual time it takes. Go over 15 minutes with a service and round up is usually the practice in a facility, or so I've been told.

Hidden facts and figures endanger our Seniors and families. You are the resource, the ways and means and your reading, sending emails to State and Federal House and Senate members and ensuring the web is full of comments, pictures and concerns about Senior Long Term Facility Care is critical.

Like it or not, many of us will spend time in one of these places. 

Let's make it time worth the days of our lives and not time taken away from our lives.

Living In Jello: Life During & After Lewy Visits

Since beginning this blog, I've started many entries, stopped writing one and moved on to another as life happened, as life changed, as my ability to "cope" or "get through' one incident, another challenge, occurred. 

I've talked about feeling like I was living in "jello", as though the world around me was constantly quivering, quaking and although firm, feeling as though it would collapse around me at any moment.

When you have two separate, unrelated, highly demanding and constantly volatile life challenges and an outside influencer tearing you apart piece by piece, it's like any other unpredictable life event -- tornado, tsunami, economic shift or collapse -- out of your control and coming at you from all directions.

Looking backwards, picking up where you left off, returning to the scene, sometimes provides a new perspective. Here's one that's from the Summer of 2013. Husband passed a year and a half before, Mom was days away from her 99th birthday.

Originally started as an entry 8/1/13.  

Unknowingly then and even now, we provide Julia with ways to endanger and make life miserable for Mom and for ourselves.

Undue Influence in the Senior population is generally referred to as having a base in securing a financial advantage over the elderly person who may or may not have reduced mental capacity.

Using a relationship to direct, influence and produce action can be an emotional control mechanism over another individual as powerful a stimulant for Undue Influencers as drugs and alcohol are for others.

Many of us believe a Power of Attorney provides Seniors protection from predators and abusers.

There are irrevocable Power of Attorneys but they are generally written for specific items and not with the scope and content of most Powers of Attorney or Durable Healthcare Powers of Attorney.

To protect our loved ones, we are told to consider the significant step of Guardianship, basically replacing someone's rights and responsibilities in areas of independent action.

Hard to consider even with obvious advancing Lewy Body Dementia. 

The hallucinations and delusions are very frequent and anyone who cannot see this behavior simply doesn't want to see it -- the LTC facility, for example.

But making the decision to "take away" Mom's autonomy even with the mental anguish and monetary losses we've sustained -- just can't do it.

Why aren't there simpler procedures to stop undue influence?


We're all growing older. We all want to maintain our independence. We want to make decisions with our time and our money as independently as possible. After all, that's what we're taught: to be independent, self sufficient and self reliant from childhood on. 

Do it for yourself; don't depend on others; you make your own way in life -- and more admonitions.

HIPPA prevents as it protects and it's often used as a way to prevent.

Walking along the corridors of a Long Term Care, hearing and seeing questionable actions being taken, making the step to contact the Ombudsman office or the DHSS (Department of Health and Senior Services), I know I've become "one of them", someone who interrupts the flow of their daily work presenting new challenges and decisions they'll have to see how serious the report is to decide what action to take.

I am not a most welcome visitor. And, if they could, I'm sure the facility would stop me from coming. Thankfully, there are laws for that.

Keeping an open door and even more having everyone who visits focus on being more than a casual or even a frequent visitor to a loved one, looking, watching, listening and REPORTING TO AUTHORITIES is what's needed in many places.

Someday maybe I'll have the time and the ability to talk more about establishing a resource for families to communicate directly, not through the facility, with one another and with the general population.

Living in Jello as we move through the life of being a care giver needs to change.

Culture Club. Changing Values for Seniors

"SECTION 3 -CMS, CULTURE CHANGE, ARTIFACTS OF CULTURE CHANGE

CMS and Culture Change and Artifacts of Culture Change - The traditional nursing home regulatory approach has created tensions between providers and surveyors. 

Culture change is movement to transform a facility to a home, a resident to a person, and a schedule to a choice.

States and the federal government have worked over the years to examine regulations to evolve them into a more responsive regulatory system. 

Documents below are offered to home nursing homes to work with their regulators to change the environment of their homes while meeting the regulations. Missouri has set a 100% compliance goal for facilities filling out the on-line version of The Artifacts of Culture Change. (www.artifactsofculturechange.org)  

This organization tries to effect change. The wheels of government entitites who are responsible for change is more focused on other areas of our culture and apparently does not see the value in providing for "the later years" of its citizens.

Mom entered a facility in November 2011; she passed in January 2014. As a statistic, her stay was the average length lasting between two and three years.

Mom's actual costs during this time involved numerous trips to Emergency Rooms for falls necessitating sutures, to outside Dr's and ER's to correct neglectful and harmful situations (failure to adequately clean the perianal area resulting in sores, hemhoroids and infections, i.e.) and many trips to outside Dr's for wound care and other care not provided as required to ensure health and well being.

As a fact, Mom had more medical problems brought on by lack of quality medical supervision, the supposed sole purpose of someone entering into Long Term Care/Nursing Home Care.

If you've read previous entries, you'll know this was not my choice and never was her choice. It was a conspiracy of a woman who came into our life. 

Many are forced to make the choice of placing a loved one into Long Term Care. Few make that decision themselves except those with significant medical challenges (life changing conditions like Lupus and advanced age, loss of legs or limbs due to Diabetes, etc).

ALL NEED MORE PROTECTION, MORE SUPERVISION AND MORE INVOLVEMENT BY THE ESTABLISHED FEDERAL AND STATE REGULATORY ENTITIES including the Departments of Health and Senior Services AND the Ombudsman Program (known as VOYCE in my state, Missouri and possibly by other "names" in yours).

I will continue to visit, to watch and to actively report any violations I see. But what is really needed is the reporting of those who regularly visit a loved one because they see so much more than the "infrequent" visitor or guest of a resident who is not immediate family. WHAT WILL YOU DO?

Culture Club.  Boy George is now 54. Prime candidate for AARP. Why not turn this "name" into a real statement and focus on changing the "culture" of our country to recognize and support actions and living conditions that value those who provided the basis for our economy, our lifestyles, our discoveries and inventions, our very lives with their Service.