Where Are We Going & How Will We Get There?

Written April 9, 2013 and set aside:

How long have we been traveling the road of Lewy Body Dementia? 
Since the "diagnosis"? Years before?  When is LBD, LBD? 

I've read so much over the past many months since Mom was finally given a "preliminary" diagnosis of "possible LBD". In the LBD world, that's as close as it comes for most living human beings: "possible" or "probable".  

For the very aged, like my Mom, only with an invasive die injection and MRI or an autopsy can a more definite diagnosis be given. It's important medical practioners know the diagnosis of "possible" and "probable" are diagnosis and should be cited and referred to when making medical diagnosis/prescriptives.

Unlike Cancer or Heart Disease or other "medical afflictions", LBD is more of a "mental disease" and we're as unknowing about the human brain as we are about outer space as far as the intricacies, complexities and realities.

I've watched as the LBD Association and others have provided "new" information based on observations and growing experience. This once thought to be rare disease is quickly becoming the challenger to Alzheimer's as the most prominent type of Dementia or at least coming alongside as equally important.

My oldest son still doesn't believe his Grandmother has any "real" mental challenges even with her most recent delusion of having gotten married to a man she'd met as a teenager over eighty years ago and not seen since; a man the Census lists as deceased for over twenty years. Oldest son can't grasp this disease's variations and length of impact on the individual and the caregivers. 

It took my youngest son almost two years to believe his Grandmother had significant mental processing problems; unsure if he understands how far back these challenges really go. Lived through many painful episodes trying to convince him with the limited amount of material available Gma needed more testing and diagnosis. He had the POA; JH, whom I'll write about in other entries, had Mom remove my POA of many years as she worked to gain Mom's confidence and trust so she could use Undue Influence.

My daughter lived with us and with her Grandmother during years when Gma was really changing mentally.

Daughter recalls incidents she did not relate to me that are now clearly the work of a mind growing more and more incapable of reasoning, rational thinking and consistent accuracy with daily skill sets. Incidents that clearly show an inability to reason and a willingness to make decisions irrationally and led to her being highly susceptible to JH's manipulation and control.

One of the principal components of LBD are the hallucinations/delusions.

Mom had "visions" of people outside our house in early 2010, people dressed in clothing more early twentieth century and small town styles like where she lived growing up in rural IL.

When I think about it, there was an occasional remark about seeing something or someone even earlier than that but we always thought it was her eyesight as she had cataracts and macular degeneration. That was before we knew about LBD. Mom's nose ran constantly; sounds silly but this is also a "warning" sign about LBD. 

We also wrote it off to possibly some medications she was receiving or a urinary tract infection; those "write offs" came at the suggestion of JH, a woman who entered into our life while my husband was critically and chronically ill during the many months prior to his passing in January 2011. She's an RN; she specializes in working with elderly men and women with Alzheimer's and Dementia; she works by herself, only for private pay. 

Daughter and I believe she's an elder predator focusing on relieving the most vulnerable of cash and other valuables, ensuring she stays alongside them until they pass on or totally lose their mental capacities and can no longer shed light on her actions or activities.

BUT....is it really a delusion/hallucination?  This "marriage" of Mom's to Lawrence? Daughter and I believe it's not.

Our research doesn't support d/h's that are as complex, have intricate and changing story lines and that seem to wax and wane and always have a central character somehow involved that's developing the story -- a woman. The woman has different "roles" she plays: sister, Nurse, provider of goods and services, but most of all, "trusted advisor".

I'll tell the story in a later Blog entry; it's fascinating and if we didn't have to live it we probably would have had a good laugh about it because it sounds so "funny" for someone to believe all that Mom has told us.

It's also sad and very maddening because the story also includes their "divorce" and his "already being married to someone else" and more.

Daughter and I see this as cruel and unusual mental punishment and not a self generated hallucination or delusion attributable to Lewy Body Dementia or any other type of Dementia. Manipulating the life and emotions of someone as old as Mom is despicable and sickening in my opinion.

LBD by itself has enough challenges and fluctuations to make the average person want to run away as fast as they can because you never know what mental or physical state your loved one will be in or may lapse into during time spent with him/her. 

Having someone who, it appears, is causing more challenges and fluctuations that disrupt relationships and cause more disturbance in daily living appears to be done to separate the support of loving and caring family members to ensure complete control and manipulation and that is a sick way of living, in my opinion.

This Blog gives me a voice beyond the small circle of people involved in Mom's life and daily living.

It gives me hope, a purpose and a means to encourage Baby Boomers and all ages to look, listen, learn and prepare never to let down your guard under any circumstance.

It gives me a voice to be heard by others to warn them to realize when you are most vulnerable is when you are most likely to be taken advantage of in ways that will attempt to destroy your life and your relationship with your loved one.

This Blog helps to get the word out about the real challenges of living with Lewy Body Dementia before, during and after the diagnosis and ways to survive and thrive making this end of life journey livable.

And, finally, provide information on how to unite with others to provide quality of life for our loved ones who must reside in a Skilled Nursing Facility through forming Family Councils or Alliances where friends and family caring for loved ones act together as a group and individually to support and when necessary, defend, those who cannot speak or act for themselves in ways that provide self protection and self determination.