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.