True/False Questions Families Must Read About Caregiving Facilities

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 were:
(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 run out
(4) Funding for programs, including Meals on Wheels, that while mandated by Federal Law is left to each State to fund. 

I watched as Missouri's funding was reduced by 1/4 one year. 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.

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.