Saturday, February 18, 2017

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.

Tuesday, February 7, 2017

Culture Club. Changing Values for Seniors


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. (  

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.