Sunday, January 28, 2018

Criticism, Critical Care, Critique

Looking back the words still sting.

Emails filled with vicious accusations of incompetence.

False accusations, wild misstatements. 

How could someone who lived in the same house as two other children at the same time believe their life was so completely different especially when that life parallelled a brother's almost completely?

At the time I was barely coping. With two family members, husband and mother, both facing their life challenges, differently but similarly. 

He losing his physical abilities and she losing her mental abilities while going through continuing physical challenges and losses as well.

Where was the "coming alongside"? One visit during the 100 days almost constantly in Critical Intensive Care for his father?

I understand. He was working. He didn't have the advantage his brother had of travelling for business and being able to "swing through" with quite a bit of planning.

Phone calls?  They were to question, to accuse, to find fault and to let me know no matter what I did it was never enough, never the right way and always, always, in some way negatively affected him and his life.

That last phone call he had with his father. I walked in as it had ended. I watched my husband begin to sob and shake. He went from this to uncontrollable shaking and needing a Nurse to find blankets and administer meds.

He cried after ending the conversation when I walked in. I can't remember seeing my husband cry. I'm sure he did when his father passed as they were close and for his mother but not in this way. He seemed to be torn inside out.

My husband knew this son had ripped me apart on the phone and in emails. Even when I didn't share what was said, when he had bad days or when I thought it wasn't good to "update" him on all the verbal attacks the son had made on me and in so doing on him. We were abusers this son said. 

Today I know it could have been different. We'd called this son after talking with the other and finding he could not help but his words were gentle, kind and wishing he could. We were going through every penny we had. Poor planning the oldest son said. We should have and could have done better all the years before, we were told. 

Didn't matter through it all we ensured he, his brother and his sister and for a while a child we took in, husband's brother's son's child, was provided with food, clothing and education and more.

Didn't matter we survived at least once each decade odds that put others in far worse circumstances:  his birth and necessity of medical care far beyond the insurance we had; his brother's birth and complications from a milk allergy; his sister's birth and taking in an extra person while helping with two college tuitions and so many additional costs; a fire and loss of seven years of what we'd accumulated; loss of a job and months trying to find another; economic losses from moving to another location in times when company's didn't cover the cost.

A long story. A life story. Always focused on family. Always focused on the son and the others but him first as the oldest. He set the way, we did not want to play favorites. 

It's interesting now. He's shut us out. The two of us who remain of three of his immediate family. It's not the first time. He's played this "joker" of a card at least twice before or is it three times -- going through as much as we have I've lost count.

I can't be around his children. I'm the problem. His sister chooses not to be around him. She's not a child. She's an adult who's endured many of his abuses and wants no more.

I understand. This son once asked me since I'd said long ago how when he was born he "looked like" his Grandfather, my father, "how" he resembled his Grandfather now. 

At birth this first born was bald and blue eyed -- just like my father. And I'd told him that several years ago. It's typical after birth to compare physical attributes to one or another family member and he was my "first" so that physical comparison was expected. Plus, my father passed.

Cancer of the lung, too many years of smoking and too much drinking, when I was in my first year of college. Even with the life we had together and what we went through apart, I still loved him and watching my mother cry after years of being divorced, when she was told of his death, I knew she did, too.

So many times I told him he wasn't like his Grandfather, my father, as my Dad was an abuser. An alcoholic. He couldn't stop. Once in a great while he'd try but he always returned.

"Don't reach in that trash can, little darlin" he'd say to me. "Dad's thrown away a razor blade and I don't want you to get cut."  

Now, I didn't usually reach into trash cans around the house but I knew, even at less than nine years old this meant he'd thrown away another empty bottle of Hill & Hill, his whiskey of choice, cheap but able to give him the "escape" he needed.

No, my son, even when you went through your phase of underage drinking and the other questionable actions you took, I never compared you to him, I never believed you were "like him".

You see, as I've told you, my first born and my oldest son, I did what I did for you because I'd been told my father probably did what he did because he had no advantages in life. 

Dad was intelligent, I was told by members of his family, but he had to work in the Barber Shop, take money home to the family, never able to go regularly to school and never able to feed his love of learning.

I vowed no child of mine would ever have to go through not having the opportunity and the best I could provide. 

I lived my own life loving to learn and making sure, in a time when people my age were just starting to go to college in higher numbers, I was the first female and the second person in my mother and my father's family to go to college and I finished and I continue to learn.

I'm sorry for you, my son, as I've told you .... what is it now, going on five years...since you cut me off, for the third time, from any contact with "your family" and that includes your children.

You've had another child in that time. Believe he turns three this year or it could be four. 

Interesting how life moves forward. You've told me how poor my choices were and how they created problems.

I noticed your wife wrote on the internet how she was surprised by this "late in life" addition. It had been what, six years, since your fourth was born?

I'd heard differently. I'd heard there was a request for a vasectomy and it didn't happen. That's a personal choice. Like so many we all make in life. And, like many choices, it can have unexpected or difficult challenges added.

You know, my son, I'm reminded how your father and I communicated. How we cared about one another and how he had once considered taking that action after your sister was born. I told him I'd be there with him if he did. And I would have. He didn't. We had your sister late in life; a true blessing as were our sons, you included.

Life is choices. Some good. Some may not appear so good. 

What I value the most is the love we had and the support we gave one another and how as I approach, alone, this year of celebrating an amazing anniversary I wish was alongside him maybe taking a trip together somewhere or gathering the family together as we did when we hit that first milestone while you were in college.

But I'd do things differently. I've learned, you see, my son. I opened my heart and arms to the woman who became your wife and who, in my opinion, has split our family apart along with your willingness to let it happen.

I can bear this time. I've been bearing many "times" in life since I was very young. I don't like it; I wish it wasn't so and I'm concerned that what the two of you have done this time will have repercussions you cannot begin to imagine the longer you refuse to reconcile and remedy other actions you've taken to tear asunder what a power higher than you joined together.

I've gone through several years since my husband's passing and Mom's. Years when your coming alongside would have made the journey easier even in the most difficult of times.

You walk your path. I walk mine. As did your father with you.

Why? What cannot be mended and what cannot be fixed if LOVE is truly within us?

Criticism, critical care, critique. States of mind and states of living. For how long is in your hands, my son.

Tuesday, December 12, 2017

And Life Goes On . . .

Where I have been . . . where I was .... where I am

Choices . . . so easy to analyze in the future you cannot see from the present where you are

Chances . . . taking risk, making decisions, believing in myself and . . . 

So easy for others to negate. So easy to walk away. 

Facing life is far more challenging than simply interacting .

Feeling like I'm on a carousel riding round and round, up and down with no stopping or starting just going in continual circles.

Reaching out into thin air with hand extended only to close on .....

Believing in tomorrow while honoring yesterday

Give it up, move on, look away . . . or silence, no support, no suggestions, no concern

Who Am I? Who I've Always Been. Different Now. Forever Changed. 

Stepping into the future. 

Eyes sometimes closed, sometimes squinting, sometimes wide open. 

Listening. Talking. Sharing. Learning others walked a similar path and move down similar roads.

Who Am I? Who I've Always Been. Finding Myself. Again

Friday, December 8, 2017

Grief Wears Many Faces

Google the word "grief" and here's what you find:

GRIEF: Deep sorrow, especially one caused by someone's death. Trouble or annoyance.

Further google "sorrow" and you find:

SORROW: a feeling of deep distress caused by loss, disappointment, or other misfortune suffered by oneself or others.  feel or display deep distress.

Grief actually wears many faces -- the everyday, the horrific loss, the time past and the  faces presented to the world in each human encounter experienced today, tomorrow, everyday.

Death is one form of Grief. It seems to be the most challenging because there is no hope in the here and now for change. Death, after all, is the final frontier and not reversible.

Last night I met a woman who was working through her grief of a couple of years. Her "friends" keep telling her it's been long enough, she should "do other things" and of course, they tell her what she shouldn't do, too.

She had a very long marriage; they were a "good pair" as we would categorize people who made their lives together and survived decades of challenges.

Not to be minimal, but think of it as having in your life anything, human or an object, when it's "gone", you "miss" having it. The degree to which you miss this object is often associated with the length of time, the value and the part it played in your life. 

Well intentioned friends and acquaintances who have not experienced the loss of a spouse may not truly grasp the level at which the loss is experienced and how every facet of life is affected, every day that passes.

Grief has many "faces" to the world:

Some had less than good experiences in their relationship and so the "passing" may even be a relief but reflected to the world as one of their having "adjusted" so well, so quickly as they moved on. It's different for everyone; don't be quick to judge, to approve or disapprove; it's their life, not yours.

Some find a need to replace or restore their lives through finding another to share the time and reclaim life as they knew it.

Some bear the loss seeking solutions along the way to understand, comprehend and manage a new, yet unwanted, life beginning.

Some have been affected by more than just the death, the illness, the loss -- they are struggling to move forward and most people walk around these individuals, some offer support of one kind of another but most go on living their lives giving their support or encouragement when they have the time or when they come in contact with the "bereaved".

Why do we only see grief as being a "deep" feeling and if someone doesn't "display" this form of grief/sorrow, are they heartless, uncaring and unfeeling?

Some of us hide grief created by the actions taken by someone in their life that aren't associated with death but have the same effect. 

Children who remove the ability to talk with or visit grandchildren, for example, because they cannot resolve differences through active listening and engagement in resolution processes.

Parents often endure times of great sorrow when the children they love and have nurtured turn away and against them.

They've endured behaviours from these children over many years and now the "child" uses the "ultimate weapon" -- denial of the only thing they really control access to believing they are "winning" a "battle".

How very sad to use human beings in this way. 

How very unrealistic the parent is who uses this method.

There are, of course, valid reasons for denying contact including physical abuse but to insert another human being into a situation where you cannot face the challenges in the relationship you've created does not resolve the situation and only adds "fuel to the fire".

Sadly, these grown "children" who "pick up their marbles and go home" when they cannot get the other person to follow their lead, to do what they want and to give up whatever the other wants, are planting the seeds of a tomorrow when their children will be adults, when they will have the ability to question and when they will possibly put into practice what was done to them by these "grown children", their parents.

They have struggled in life facing and owning their negative actions and often hide behind masks they create to hide the reality of what they've done and continue to do. 

To the world at large, these providers of grief may appear to function normally, possibly even exceeding in areas, but in reality they are deeply troubled individuals who need to face the real problems in their lives, not those they "identify" or replace what should be faced, what should be resolved.

The definition of grief that includes "trouble" and "annoyance" I would expand and add "a force that weaves into and around the life experience causing unforseen and unanticipated disruption and potentially unreclaimable losses."

INTERESTING COMPARISON:  I've been writing about the need to redefine or rexamine DEMENTIA and recognize it's not the depth of the disease, it's the impact the disease causes in all its stages.

THIS IS GRIEF'S DEFINITION AS WELL.

To believe Grief starts with death and over time subsides or goes away is as false, misleading and deceptive as believing the only kind of Dementia is Alzheimers. 

As for me, I've chosen not to accept Grief as others define the process. 

Has Grief affected me? Absolutely. 

Does Grief rule my life and control me? Definitely Not!

It's understanding where you are, where you need to be that becomes important to allowing for grief but not succumbing to it or building the forcefulness of its impact on you.

I've lived believing each day I face choices, make decisions and continue the path with those whom I love and loved, walking together even though we're apart.

Many days, many years that have followed have not been pleasant, enjoyable, welcome; many have been devastating or highly challenging. 

We, you and I, decide each day how we will move through that time, when we have moved forward and to what point without someone with whom we shared and may still have or may choose to place in a different perspective, a life bond.

Grief is personal. Grief is not the feelings of a friend, acquaintance or another family member. Grief can be shared but grief is unique to all it affects.

We, you and I, can find a small speck of joy or simple positive thinking in the deepest of life's challenges.

Grief, in any form, is natural. You have the personal right to adjust, to find relief and to change your focus to provide positive life movement.

Wednesday, November 15, 2017

Putting On Widowhood: In The Beginning

In the weeks following my husband's death, as I spiraled and swam in the jello of life as it was becoming, I found refuge going to a bookstore. 

I was a "widow". I didn't know what that meant except I was no longer "married" and the person in my life was gone, never to return in this life.

How did others live during this time? What did they do? How did they go through the days, the nights and the time from ... here.....to.....there?

Books had always been a major refuge and a ways and means for me to move into and through various times in life.

Most of my life I couldn't afford to buy books but I discovered very early the wonderful world of the Public Library.

I was as deep into books as some kids are into video games.

Magazines and periodicals of all types beckoned me to open them and learn about history, science, the world in general and people in particular.

I loved to read. I devoured the classics,  SciFi writers like Bradbury and Asimov. The fantasies and deeper, more life challenging and thought provoking writings of Madeline L'Engle and others .

At thirteen I'd read many of Tolstoy's works including War and Peace and Anna Karanina. I was the girl walking home from the library with as many books as she could carry. 

My world was small in my first two decades; my time was vast. 

Moving as much as we did, friends came and went. 

Immersing myself in activities of the mind, you'd think I would have been a straight "A" student. I wasn't. In fact I was surprised when I was told I would be admitted to National Honor Society.

Then came college made possible by a small scholarship that would help me with tuition and books for the first two years. Working every chance I had and saving I was able to make it to the "goal" -- the coveted BS degree.

Being away from my Mom, my "rock" and the one person I had who was constant in my life, was challenging. 

I often found a way home from the not so far away college campus on weekends feeling the separation even though I was very involved in this "new life".

I met my husband at college. It was at a center on campus that had a Ping Pong table and I was learning and loving this sport where two or four could use both mental and physical abilities.

He was from an area close to where I lived and he had a car and drove back to see his parents and his sibling almost every weekend. It was early in our "relationship" that I went along for the ride each time he went. There were usually a couple of other people. 

I still marvel at how he was able to get four people's weekend luggage into a really small car. Over the years we shared together I continued to be surprised by his capabilities and how our interests, our abilities, complimented one another and built our life together.

First Semester ended. Home for the holidays. We shared time with his family and with my Mom. Then, life changed, as suddenly as it would as we moved through our lives together. 

I remember opening the door to our apartment and seeing my Mom  sitting by the phone with tears in her eyes and a handkerchief to wipe them away. Mom seldom cried. Throughout the long challenges she faced as a Divorcee I cannot remember seeing her cry as she did on this day.

She told me my Dad had died. 

 Although my Mom and Dad had been divorced for several years and we tried to keep where we were from him because he would get drunk and stand outside where Mom worked or where we lived and call her horrible names or try to get her to "come back" I had reconnected with his family.

I learned he was in a VA hospital. I, too, had wanted life to be so different. A family. That's what we should have been. Together. But not living with the abuse Dad could not control.

I'd been to visit him when I was told he was very sick and in a VA hospital. Cancer. Of the lung. Heavy smoker and heavy drinker do not make for a long life.

Mom was a divorcee. Another title in life that carries a list of society's tags. Was she also a "widow"? In her heart I believe she was because through it all I know she loved him, cared about him and truly wished he would change. 

She'd married for life, I believe. She could have remarried although at the time being into her 40's it was not nearly as common as today and as she said, "I know what I have now and I don't want to walk that path again."

Widowhood. How do you wear this "new" identity?  To wear or not wear your wedding rings. To become "Ms" instead of "Mrs".

To catch the glance of women you know who hold on tighter to the arms of their husbands either out of concern you might have something "catching" that might enter into their lives if they don't take precautions by holding on tightly to what they have, they might become like you.....

Hurricanes and rainbows.  Torrential rains and bright, clear, sunshine. Chaos and peace.

Advice. Always more advice on areas of life you don't ask for it. Other people who know so much more than you do because widowhood somehow makes a woman less competent -- if she was ever viewed as truly being capable, that is.

As always my life focus, I went to a bookstore believing I'd find books written on "being a widow" as though it was a profession or hobby one would write about.

Deep down I'm sure I was losing my life balance and looking for something to hang on to, to support me and to give me insight into where I was going, in what directions I might be going.

If it was only that simple. Like baking a cake, fixing a piece of equipment or going to school -- direction, guideance, focus from those who have "gone before" and prepare you for what's to come.

What I found?  Being a Widow comes with either a capital "W" or a lower case "w". It is the major part of your life or a constant part of your life.


What I found?  Widowhood isn't a popular subject.  After all....who wants to write about endings......

Saturday, October 7, 2017

Dementia Goes By Many Names

Spreading the word about Lewy Body Dementia I've often explained the difference between LBD and Alzheimers as a line that's drawn like stair steps for Alzheimers and a scribble on a piece of paper with no visible beginning and no recognizable end for Lewy Body Dementia.

It's important we all stand up and speak out to raise awareness for Dementia and understand when we separate into "camps" of "types" we lose the ability to wage the major war necessary to stop its effects or even possibly end some or all of these Thiefs of Life.

Long Term Care Facilities and others need to step up and recognize the majority of their residents have some form of Dementia.

The tools we currently use to recognize Dementia are obsolete and the general population and even some medical professionals still believe the disease has to be overtly obvious.

This means the person has to demonstrate visible and possibly audible affects showing their mind is not capable.

My story, Her Story, is one of waging a battle against the status quo to move society into the brave new world of recognizing and realizing Dementia can be managed, can probably to some degree be detoured and may be handled without severe medical intervention but most importantly, MUST BE SEEN AND MUST BE RECOGNIZED.

ACCEPTANCE.  Key #1

Focus on the person, where they are, with communication and compassion. 

Understand the first line of defense is a community of support, a family that works with rather than administers or directs relationships along the way of life.

Those who listen, those who actively learn, make their path and the path of their loved ones less challenging and more rewarding.

LEARN ABOUT DEMENTIA.  Key #2

We can learn more from networking and collaborating with agencies and organizations who have shown over the years to be "forward thinking" and effective in their ability to work with people with mental and emotional limitations.

TAKE/MAKE TIME. Key #3

Give your loved one and yourself time. In today's push-me-pull-you challenged society it's difficult but it's critical to a balanced life for them and for you.


UN-ISOLATE.  Key #4

Dementia isolates. The person from themselves and the person from the family/care giver(s).

Sitting alone. Laying in bed. Staring out a single window.

Rights are important. Decisions should be honored.

Dementia is a medical challenge and with that comes responsibility to interact and assist.

DON'T DIRECT. INVOLVE. Key #5

Take cues from what you observe, listen to your tone of voice and move slowly and ensure you're in their line of vision, hearing and/or at their level and remember these "senses" may be affected by the Dementia and may vary. 

The same great methods taught by leaders in the field of child and personal psychology can be applied with Dementia.

It's not an "I win" situation, it's a "we all win" plan.

LEARN AND PASS IT ON KEY #6

It's not easy. It takes time. You're busy. You have "a life". It's too far in the future. It may never happen....

We make time in life for what we value.

Qualify of life through the ages and stages is important to living together and living the solitary life.

We share this world and we affect what's been given to us by those who came before us.

Honor those going forward and moving quickly into the last of their time. 

Push Forward in Social Media   Key #7

Facebook, Twitter, whatever you use, wherever you post or speak out, add a line, a phrase, connect with an article.

The need to recognize DEMENTIA in all its forms is critical as is the focus and the collaboration of the organizations already established: Alzheimer's, Lewy Body Dementia, Parkinsons, etc.

Reach out and raise your voices to include those among the dozens of other types of dementia. Here's a list from the Alzheimer's Association of a few they recognize: 


Here's a resource I like to pass along

Feel free to copy and paste it when you help raise awareness and provide insight to:

Discover and Defeat Dementia



Tuesday, October 3, 2017

Run, Run As Fast As You Can . . .

Funny how many in their "middle ages" today run or bike or physically push themselves in sports chosen not as much for socializing but to try to stand out or show they can and will endure.

Are they running from something or towards something???


You can see personalities more clearly in those who push themselves to achieve . . . not just participate..


Could it be setbacks, disappointments, unplanned or planned life decisions not found to be as positive as expected are often the hidden challenges, the reason behind pushing for running longer, faster?  


Running after a life where personal recognition through pushing just a little harder, just a little longer, just a little more can make the difference in self satisfaction and recognition by others of achievements missed in other ways, in other places, other times?


This passion for running longer and longer distances or faster and faster times or against their own "personal record" gives them a focus, a means to an end, a way they can express their "need" to achieve while life is usually pushing them backwards or sideways.

They live as other generations have, they acquire and find themselves with memories from a lifetime growing in length and depth and believe they're not as "possessive" as their parents and grandparents because they don't "collect" or "assemble". 


It's fascinating how each generation believes they are so special, so different, so unique. 

Realization often comes when they've moved down the road of life into the final years how similar, how much alike, how they've followed in the footsteps of those who came before them even if they walk the same paths, share similar experiences and see the horrors of "war", each generation believes -- it's different.....this time.

The newest two generations, Millennials and those who follow closely behind are  experiencing the horror of unrecognized warfare in their homeland cities and states -- as the Baby Boomers did when three cities burned in the late 1960's.

Baby Boomers watched friends conscripted for a War that was undeclared, friends return without any "Welcome Home" as they were not the Heroes of their fathers' generation. . . IF they returned . . . and too many did not.

Broken apart by the mental and physical losses sustained by their brothers, cousins, friends, never to know or understand "why" and to watch as more challenges broke out, more losses were incurred.


Then there  were the "wars" on the home front. The economic crisis that seemed to come regularly, once a decade, and not just minimize but destroyed savings, plans, the present and the future.


And now, this aging population is being "blamed" for NOT saving enough, NOT planning well enough. Some of their predecessors and a few among them have "Pensions" but this "benefit" became a historical feature only available to certain categories and in fewer numbers.

Every decade from the 60's onward brought another severe financial challenge and many losses of the small amounts of "wealth" many accumulated.


Ask anyone who's had a child or family member with medical challenges how long their "savings" lasts. 

The Greatest Generation struggled through not having food, clothing, places to live and The Great Depression. Society went through times where they supported one another. Sacrifices were commonplace and most did not regret what they "willingly" gave to parents, siblings and others.


Baby Boomers saw, heard and experienced corruption within which was harder to live through than the corruption in a common enemy beyond our borders because we could not see, could not affect and had no voices on cell phones or the internet to raise, to share and to lead in other directions.


They demonstrated and raised voices. Women went out to work to be turned away, turned down for upward mobility and simply told, as I was "I want a man in this position."

Have Times Changed?  Or have they moved forward wearing different identities carrying the same challenges for another generation.

Run, run, as fast as you can but most will not be able to outrun LIFE, the unpredictable, the unplanned, the unwanted. 

Thursday, September 14, 2017

Lewy Body Dementia; Runs Silent, Runs Deep

#1 in a Series of Life Reality Letters 

Care Giving is not for everyone. 

We see an end in sight with a baby. 
Eighteen to twenty one years usually.

When someone has a medical or physical challenge, we can't see into the future, there is no specific direction and often no markers or guideposts that definitely apply.

Parents of children with life affecting illnesses understand a little better about eldercare. 

Some have hope for positive change, for progressive forward movement. 

Those who care give for a family member with Dementia, mental and physical challenges, illnesses and afflictions, stand alone while standing beside and walking along life's winding, steep and ever changing paths.

You, there! Yes, you who sit in judgement and believe you "know what's best" and it's not "being given" as you "believe" it should be . .

Where are you? On the sidelines? Living far away? 

Separating yourself rather than coming alongside?

I've known you.  You're my oldest son.
You find fault in everything that's done.
  And it's never enough.
You cut your family off. 
  It's easier than coming alongside.
You have "your own" life challenges. 
  So do we all.

I've known you.  You're oldest son's wife.
You make no contact.
  No phone, text or email.
You "follow" his lead
 Appearing to support while actually directing
You proclaim yourself a "professional mother" 
 Limiting yourself to who, when and where you practice what you preach.

Non Care Givers, those who have been judge and jury, move from sentencing others to putting the past "away".

At the time, months after action has been taken and in the years that follow you never once say "Thank you for taking care of . . . Dad, Mom, Grandma, Grandpa, my brother or sister....."

You attack, you blame and strike out verbally because you cannot accept life changes you cannot control. 

You hold everyone but yourself responsible and accountable.

Life has lessons to teach you.

Life is working daily as you progress down paths set before you not always of your choosing or planning. And when you do make plans, they seem to have a life of their own taking unexpected shapes and sizes.

You refuse to accept change and believe you can erase the present while not seeing the future if you can discredit the past.

You refuse to listen. 

You refuse to become involved.

It's "their" challenge, "their" problem . . .  if any problems really do exist, you tell yourself.

You twist and turn reality without spending real time with the person who needs the care, without truly being "the caregiver", you make your determination the person "isn't as needy as you've been told".

You visit for a short time. You leave. You're hundreds of miles away from the day to day and the constant fluctuations of a disease that wrecks havoc on the individual and those who care give.

You do not tend to the person's physical and emotional needs and the few telephone conversations you have you write off any "challenges" to the transmission, the person's "hearing" or any one of a number of possible excuses.

You shout for all to hear "Abuse". You support anyone who "believes" this is what's happening. . . especially anyone you see as supporting you and "respects" your "distance" or the person affected with LBD, known for turning the care recipient against the care provider.

You see the past, not the present. 

You cannot cope with reality. 

You create what you need, what you can accept.

Love is blind, so they say. So is fear of loss.

Dementia is a thief in the night. 

Lewy Body Dementia wears many masks; it plays many parts as it moves slowly through the brain and the body causing challenges and incidents.

We do not "connect the dots". 

We see TIA's, high blood pressure, falls and other "signs" as not being a part of the process of LBD and other Dementia.

Dementia does not appear full blown overnight, usually. 

However, some medical incidents can damage and destroy capability and capacity which is highly noticeable and permanent.

Lewy Body Dementia is a very clever disease.

It seems to "wait in the wings", on "the sidelines", giving direction and coaching in the beginning.

As the disease progresses, it begins to become the lead player, replacing the person with its own persona.

Taking over. Becoming someone "different" to the world. 

Being seen in its full regalia, finally, by those who care give, those who care about and those who have the responsibility they've taken on as "Care Giver" and fellow traveler walking alongside and sometimes running to catch up with the changes, the differences, the needs of Lewy Body Dementia.

Life is Reality when you are fully involved; it's distanced when you choose to put yourself in another place and time.




Tuesday, September 5, 2017

Come. Sit. Stay. An LTC Resident's Life Part 2

In many facilities the practice is to ensure "resident safety" and that means "get them into a wheelchair as fast as possible". 

What happens when a call light isn't answered from a resident who's semi mobile but really needs assistance and can't wait any longer as it's already been twenty minutes?  

Independent as they want to be, limited as they are, they find a way to stand, usually cannot balance and what happens is what's predicted -- THE FALL.  

Repeat. Generate Report. Repeat.

Family and resident are "encouraged" to use a wheelchair.

Family members who are concerned may follow suggestions to "remove the walker" as "that's the problem".

Family visits occasionally but relies on "professional staff" for direction and "oversight".

After a few months the wheelchair is ordered.
Mission accomplished.

Many Long Term Care residences do not have the time or the staff to "assist" residents and most families do not have the financial ability to augment and hire outside caregiver believing "the facility" is supposed to provide ALL services -- especially when costs are at $6,000+ per month/per resident for the "basic provisions".

In reality, Long Term Care has become the "shelving level" for Seniors who are about to transition or who have transitioned into being stationary or highly limited -- except for those who come in because it's the only level of care Medicaid will cover.

It's the "haves" with the money or the family support who can stay out of the "State Supported" system. 

The rest move in and move on but few ever return to "outside living" because this is not a place to "rehab", this is not a place to "strengthen". 

This is a place to sit, to stay and to come and go when you're told.

Some once highly capable, independent people, become social manipulators and users of people to ensure they maintain a semblance of autonomy until the time when their body and their mind no longer can assert themselves.


Like children and pets who want to "please" they come, they remain seated and they stay where they're told.

It's not a life any of us want for ourselves.

It's a life many are in and deserve better!