Saturday, November 28, 2015

A Caregiver's List of Daily Reminders

The list that follows is simply a quick reminder to those of us who find ourselves involved in a daily life far from regular or average and involving care giving on a "learn as you go basis".

(1)  Try to stand back and step back to evaluate and plan. As a 24/7 caregiver this is one of the hardest things to do. It is the most necessary.

(2)  Communicate as best you can. You cannot please everyone and people react differently to life challenges.

(3) Keep believing in what you're doing, the person you're doing it for, and yourself.

(4) Stay focused and create mini plans even when it's simply reacting to and dealing with one crisis after another.

(5) Remember, you are doing the best you can with what you have at the time you're going through.

(6) Listen, learn, research, but above all share with others. Find or create communities where life, living and its challenges are talked about and needed changes are made.

(7) Life is day to day and we create the future one day at a time in the present.

(8) Be thankful sometimes when no one is there to see what you see, know what you know and do what you do because not everyone can bear the weight you've been given.

(9) Find one thing each day to see or hear that gives a small amount of joy to you and to your loved one. It can be a word, a memory shared or even a smile. These moments are priceless.

(10) The person you care about, the person you care for, has a journey you can only share coming alongside and beside but to them there is nothing greater than your being there.

Wednesday, November 25, 2015

Mom's LBD Let's The Light of Truth Shine Through

This entry began a few weeks after Mom's passing. We were yet to lose our beloved family pet, a cat we'd had since daughter was quite small. Mom and my husband and the cat. A family unit passing through the cycle of life, one after another, each going through an end to their lives and what we shared together.

We marvel at how time flies as we live in today and work towards tomorrow not realizing we're creating yesterday.

Daughter and I remain; half of a family that lived together from before her birth with Mom/Grandma -- 

A family unit of three generations living together and sharing a life and love. 

Now I'm looking back, going into the closet, into drawers, places "belonging" to Mom. 

Places I really didn't go and certainly not to remove anything, to give anything away -- without her asking, without her directive and without her knowing.

Respect for other people's privacy. I was raised with that concept. It's hard to break that habit, that life direction, even when the person's no longer with us.

Mama. Mom. So much a part of my life, of our family's life. You made me promise I'd never put you into a facility until you had no idea where you were. I kept that promise, Mama; at least I fought hard to try to keep it. I didn't break it, someone who didn't really care about you, about our "family" did.

Saying Goodbye each time we visited until the last goodbye before we returned to keep our vigil with you as you moved out of this life, away from us, ending a long and loving time of sharing and caring for one another.

I was grateful, so very grateful, you'd had a moment of "realization" one day not that long ago. . .

It was Summer, you'd had your 99th birthday, Mama. Your LBD was showing more signs of advancing; we saw it and we know Julia, who still came to visit, also saw the progression and your slipping into the final stage where you'd be leaving us.

More importantly to her, you would transition to where she could feel "safe" because you were the only person who could really reveal her dark side, the part behind her public persona of "helping the elderly" as one of abusing those for whom she claimed to give care by helping herself to what she could, when she could, while she could and then sitting back to ensure they didn't reveal her true character through continuing to exploit them through a "friendship" that was filled with deceit and deception.

I'd tried many times to talk with you about "the situation". Your Lewy Body Dementia was progressing. Memories, the good ones, the ones Julia couldn't distort, couldn't erase as hard as she tried; you had those. And they were what finally broke through Julia's manipulation and control. 


I wonder if you still stand at the lectern in the Church we felt was our second home  -- we had to leave, to get away from you, your presence and your immorality. Perhaps we'll return .. . someday. We care about those who truly serve, who truly believe and who truly are religious but their eyes must be opened, their eyes must see and their hearts must know and understand real truth as hard as it is to accept one of "their own" has violated and desecrated that sacred place.

We didn't want the LBD to progress; we didn't want you to get "sicker", Mama, but I am grateful for the change, the progression from staunchly supporting and upholding Julia as "someone who could never do that" -- turn you against your family and take money out of our home and out of your pocket -- to recognizing her as being what she was, a liar and a thief who came into our lives with only one intent, to take what she could get and use her trusted position as a Registered Nurse as we believe she's done before and continues to do, to gain personally from other people's tragedies.  

You said it all, Mama, when you said "the lady who came to visit me did take my money, I know that now." My heart swelled while it broke apart because as much as I wanted to hear those words, I knew it may have been painful, although possibly not with your advanced LBD, to realize the harm that had been done to you and to your family, your home, your life.

How did you finally move to that place of realizing what she had done when you were progressing deeper into Lewy Body Dementia?  

Perhaps a section of the cognitive area, that "Executive Reasoning" part, opened up for one last time. 

My mother, my friend, my ever so special companion through so much of life's journey, had seen or been given the ability to see TRUTH.

Now, I begin that task of going through your clothing, your drawers -- your life. 

Every day you'd lived with us, many decades of days we lived together as a multi generational family, you used this item, wore that piece of clothing. I finally got your things back from Julia, those we'd taken to you in your first "residence", your first Long Term Care Facility Julia convinced you was where you wanted to stay, where you wanted to live,would be where you were safe and could do what you wanted, when you wanted, how you wanted.

LIES. UNTRUTHS. DECEPTIONS.  Easy to mislead someone with Dementia, especially Lewy Body Dementia. 

But you knew that, Julia, you were a Registered Nurse, you "took care of elderly people with advanced Dementia" as you told us. You helped them move out of their homes, even helped one or more sell their homes. So helpful. Or was it so "help yourself" you were "full of"?

We knew what you were and who you were, Julia. Even our dealing with caregiving of my husband/daughter's father's severe medical problems and eventual death did not take away all our abilities. Either that or a higher power watched over us, which I feel is also the case, and led us in ways that later proved to be provident.

When we found out -- through a card received from the Postal Service for a Change of Address-- Mom was "moving out" PERMANENTLY, we went from disbelief to shock to anger.

We'd been "counseled" by the DHSS/Medicaid representative Mom should have "respite". Told it was for Mom's benefit. We had no idea you'd reported me to the Elder Abuse Hotline (falsely, but no one has ever been willing to admit they took action too quickly and didn't do due dilligence).

We'd asked for an extension of days for Mom to attend Adult Day Care; the "counselor" from the DHSS, we didn't know she was an Adult Protective Worker as well as a Medicaid worker and didn't know how Julia had been working to get Mom removed from her home/our home where she'd lived for almost four decades and we had created many great memories of a multigenerational family.

"Oh what a tangled web we weave when we practice to deceive". Julia, you are a master spinner of webs.

Upset but honoring her decision, we first delivered her clothes and belongings to the SNC. Boxes and boxes. This must have delighted Julia; she didn't have to rely on the key she'd convinced Mom to find and put in her purse to "come back and get her things after she left". 

I took pictures of everything. I didn't trust Julia. She had torn us apart and succeeded in creating a huge abyss between Mom, my daughter and I.

Looking back I know the only way she did this was to prey upon my weakness, my natural instinct to care for and about my husband, my chronically and critically ill husband, and to not see her taking this opportunity of stress and uncertainty and twist it into an advantage she could use to turn Mom away from us, her family, and towards her, the predator.

I come across all the pictures of your travels from the time you were 62; you travelled the world and always more than once a year. We subsidized many trips; gave you the ability to travel more than once a year; provided a Single Supplement -- all because you didn't like or enjoy having someone else in the rooms or cabins when you travelled.

Why did you cut cards into pieces?  Why did you decide to throw away so many memories? We salvaged them but were so confused by how you started destroying the memories that meant so much to you. Was this the effect Julia had on you even then? To get you to "do away with" anything reminding you of your "past" and your family?

She managed to get you to put away everything in your room -- to pack up, convincing you there was a man who had come to "take you away". A man you "remembered" from your youth but barely knew. A hope held out to leave a place you really didn't want to be.

No reminders. No connections. Advance the Lewy Body Dementia through removing anything that symbolized her past life, her family, her loves and what she held so dear.

Keep Mom believing in an impossible dream. She, was after all, "out of her mind", so what harm was there in "stringing her along" with this fantasy?  It wasn't a typical Lewy Body Dementia hallucination or delusion -- it was undue influence and using the knowledge a Registered Nurse gets in psychology and working with the elderly with advanced cases of Dementia over the years that you used to make Mom's last days disruptive.

Were you trying to get the staff to order more "meds" for her, Julia? You had to know that might kill her -- LBD patients shouldn't have some of the meds for Dementia.

You came and went. You constantly "checked" on Mom watching her progress knowing the end would signal its presence because you'd seen it so many times before and taken advantage of so many, I truly believe, and still do, I also believe.

What "friend" of an elderly person purposely and intentionally tries to come between a family that's lived together in peace and harmony, in love and friendship, over almost four decades?

What "well meaning person" wants to see an elderly person "incarcerated" in a Long Term Care Facility when they had a home, a room of their own and so many amenities to move to sharing a smaller space, to having others tell you what to do, when and how. To go from a world of self determination to a world of dictation of movement and complete control of daily life.

I'm sorry, Mama, I wish you'd not had to have those experiences. We, your grand-daughter and I, did everything we could to ease the challenges, to make the path a little easier and to try, even against the odds of having people believe we were the abusers and not Julia, to give you, up to the moment of your passing, love, care, consideration and compassion.

I miss you Mama. I miss both you and my husband. 

We go on. We know this is what we are meant to do. We will, both of us, continue to bring to light Undue Influence, Elder Abuse and manipulation and control along with how this can be accomplished in a system of laws, statues and regulations that do not fully protect and ensure the lives of seniors in Long Term Care.

We heard you, Mom, when you said those words. When you realized, if for only that short moment in time, the truth and the recognition of the real abuser in your life. Julia.

We live with a sense of peace knowing you shared this moment with us. We are grateful. 

Wednesday, November 18, 2015

A Care Giver's Life Song

I wrote this entry several months ago.  As with a few I'm starting to post, the reader should realize my journey through life was greatly affected by the daily pressures of coping with caregiving 24/7, watching lives slip away or being on the precipice of another critical medical event. 

If my writing twists and turns, moves here and there, it wasn't my succumbing to mental decline but trying to adjust to an everyday life that was always on the brink of another challenge or even another disaster.

We focus too little on the care giver, the person or persons who use all their strengths and abilities focused on providing for someone outside of themselves

They are the untrained, unpaid and often disrespected men and women who stand beside the young and the old. 

Society claims there are places we can go, people we can talk with -- the truth is there's far more isolation and disassociation for those who are confined, those who must separate from the "normal" every day.

Services?  Budgets overspent. Limited to bare minimum provisions with ongoing needs growing like a Tsunami. 

How do you get there from here when all the time in your day is filled with ensuring the safety and well being of another? 

Who contacts you? How do you find who to contact and what specifically you need, what you SHOULD ask for? 

Those of us who are outside of this system, who are newly entered plunging head first and without any survival gear in place flounder not just with the adjustments to another person's needs but to how we begin the process and move from advancing point to point along the way.

If you're fortunate, just like we say "there's an AP for that", we can say about recognized and supported medical and life challenges "there's an Organization for that". 

The challenge is finding the "right" one at the "right time" and one that still has the allocations, budget, funding and provides the services for which our loved one qualifies according to their specific guidelines and parameters.

As a caregiver wading through these systems, departments, associations, organizations is dependent on the individual with whom you make immediate contact and the questions you know to ask. 

It also depends on their level of knowledge and your level of knowledge of the needs of your loved one. 

That's why it's often important to enter into this "arena" with a Durable Power of Attorney for Health Care as many will not talk with anyone but the individual without this document.

When Mom and our family went through Lewy Body Dementia, unrecognized and unsupported, the LBD Association was in its infancy. 

Today, they provide more online and other support. But they're not as local as others.Perhaps someday the Dementia organizations will collaborate more, will help one another through helping all who need Dementia assistance.

Hospitals release. That's it. Their work is done. 

You're sent to a Dr or maybe to rehab. 

Usually no one walks this path with you and barely gives you choices or possibilities -- just tells you "your loved one needs this" or "your loved one should have that" or "your loved one is no longer capable of staying alone and needs 24/7 caregiving".

They send you to a Dr. They're not knowledgeable about what you really need -- very few are. Many haven't had a course in Dementia in years but they "think" they know. You need a Neurologist but does your health care provide for that?

Sure, if you have the funds, you can get care. 

What happens when the funds run out or they're not there?Trust me, you don't want to know -- but you need to know.

Listening to NPR some time ago, I heard a discussion about Glenn Campbell and his recent song released about his fighting Dementia. He's been diagnosed with Alzheimers. His wife is saying he's in Stage 6 -- losing most of his ability to communicate. He speaks small sentences but cannot understand what is said to him. Sad, but fascinating, these losses of mental processing.

From our own experience and observation, Lewy is a difficult life visitor to determine when it arrives. 

On the outside, Mom appeared to be capable. She was using a cane to steady herself -- we didn't realize challenges with gait/walking and balance were a part of this disease process as we'd never heard of any Dementia except for Alzheimer's and this was not an AZ symptom. But isn't that just what "comes with age"? Especially very advanced age?

Don't you then just "naturally" transition to a walker and eventually to a wheelchair? Isn't that "normal".

IS IT?  Why?  What makes the legs move? Signals from the brain. What makes us capable of walking up and down stairs, in a straight line? Our brain.

As so many have done, we wrote off so much to "aging" and a belief any behaviours were "normal" when you get to "that age". 

Today, I believe we weren't seeing the signs and the behaviours; but that was in a time when we'd never even heard of Lewy Body Dementia and when LBD, when it was written about, was believed to affect only less than 5% of the general population.

Just a couple of years ago we were told by a State of Missouri Adult Protective Worker, at the management level, with a Masters in Social Work:

"If your Mom doesn't have Alzheimer's, she doesn't have Dementia."

Hope whatever school he went to has revised their training program and the DHSS has opened their eyes, their ears and ensured their Adult Protective Workers and others have extensive training in Dementia and ALL ITS TYPES AND THEIR CHARACTERISTICS.

So many "slippages" we overlooked, minimized.

Mom covered up smiling, laughing, saying how silly her actions or words were. 

After all, when someone "recognizes" they've made a mistake, isn't that good, cognitive thinking and analysis?

Apparently not or perhaps the disease had kept open this part of her cognitive reasoning ability while affecting others and as we saw in her advancing through LBD this "recognition" would become less.

Mom retained this "self recognition" almost to the end. 

A part of her mind still tried to regain control at times and she'd laugh and say, "That was silly to say, wasn't it. I don't know what I was thinking." 

And then a few minutes later, she'd slip into Aphasia with "WA WA WA" meaning something to her or "BA TA SA LA LA" meaning something else.

This "made up language" -- as we see it -- sometimes was retained and repeated and other times different sound combinations often strung together and still retaining a "sentence structure", if you will.

It was as is often mentioned by those who share information on Lewy Body Dementia on a roller coaster ride for her and for us. 

Can LBD be advanced through the world around us? 

Can we lose more capabilities through isolation, lack of challenge and new opportunities?  

Can we affect the ability of the mind through our surroundings?  

For that perhaps we should talk about the children in foreign orphanages who are said to have difficulty adjusting to relating to caregivers due to lack of caregiving. Or, how about solitary confinement or war and imprisonment?

Is our brain as we age so very different from our brain as we develop during the years from birth into adulthood and beyond?

I often wonder if her brain incapacity development possibly escalated within the facility as she sat by herself, alone and without anyone to talk with but herself. 

No radio. No TV. Mom didn't want one. For some time she'd had difficulty operating a remote but looking at some of them even today, they're becoming more and more complex rather than simplified.

But then, based on what we observed as her taking apart a lamp we had in her room, constantly unplugging her electric clock and turning it upside down or backwards on her bedside table, these typical items she was so familiar with for so long were sometimes now a source of possible challenge and even of injury and so we made the decision to remove and replace with ever simpler similar objects.

We had to remove a picture she was given from the grandchildren and great grandchildren -- a family composite of the three grandchildren and their spouses and the four grandchildren at the time. Mom would become upset because they would "talk" to her, they would move out of the picture and around the room. We often found the picture on a slant and sometimes even taken down.

Mom became obsessed with packing and unpacking; she wanted out of the facility, that was obvious. However, the outside influence of J. visiting and the "new stories" about a "male visitor" who was going to "take Mom away" and move her out of the facility (a story that ebbed and flowed with the visits of J and we saw as being influenced by and constructed by this Undue Influencer; the stories ceased when J was not visiting and reappeared after her visits).

Mom fell a lot.  Balance and gait in Lewy Body Dementia are affected. The facility wouldn't acknowledge Mom's "outside of the Dr from the facility" diagnosis of LBD. They didn't provide the level of care she needed. Instead, they "allowed" her "individual rights" to say "NO" and asked her questions, like about participating in movement "exercises" instead of giving her personal time and working with her on movement.

Looking back is always clearer than looking forward when you're walking a path you've never taken and all around you is a vast wilderness with only an occasional reference point along the way.

Here's to the unsung heroes of society. Those who walk the paths of life alongside people of all ages and stages of life. 

Their journey has a beginning and an end but it's always the way they choose to travel even in times where they appear to have no choice that shows us how honorable their life choice is to simply provide what's needed.

Sunday, November 15, 2015

Dementia Unit: Hiding Reality Behind Closed/Locked Doors?

How long have there been "Dementia Units" in Skilled Nursing Centers/Nursing Homes?

Earliest reference I've found on line is to one in Maine in 1983. If anyone knows of specialized units, those separated from the general population, a self contained unit, with special requirements for entry, prior to this date, please add a comment below.

Here's a click through  to reference more information.

"Fundamental principles of care for a resident with dementia include an interdisciplinary approach that focuses on the needs of the resident as well as the needs of the other residents in the nursing home." as quoted from Sections 1819 and 1919 of the Social Security Act (the Act).

A revised CMS guidance and surveyor training highlight and re-emphasize a number of key principles, including:

1. Person–Centered Care. CMS requires nursing homes to provide a supportive environment that promotes comfort and recognizes individual needs and preferences.

2. Quality and Quantity of Staff. The nursing home must provide staff, both in terms of quantity (direct care as well as supervisory staff) and quality to meet the needs of the residents as determined by resident assessments and individual plans of care.

3. Thorough Evaluation of New or Worsening Behaviors. Residents who exhibit new or worsening BPSD should have an evaluation by the interdisciplinary team, including the physician, in order to identify and address treatable medical, physical, emotional, psychiatric, psychological...

IMPORTANT TO REALIZE:  Current laws, regulations, standards, etc by the highest government departments are broad statements of generalized requirements allowing each State to interpret and legislate INDIVIDUAL STANDARDS without having a regulated and specific across the board set of standards and measurements.

Current evaluations are being done by staff members that can be “appointed” to positions in facilties that DO NOT have Medicare or Medicaid beds.

Many facilities are trying to move away from accepting Medicare of Medicaid and into the "private pay" sector. They're riding the coat tails of the Insurance industry who's sold a lot of policies on Elder Care Insurance and on current statistics of the average stay in a facility of three years or thereabouts.

A growing and current practice is to "secure" our older population with Dementia/Alzheimers behind closed and even locked doors in special units.

In our area, you don't need to be formally diagnosed at many facilities, only exhibit symptoms, and, of course, either have the ability to pay or can get Elder Care Ins to pay.

Mom's last facility has a place; there's a mural of tree's and blossoms painted on the wall surrounding the door. It's always closed. The people behind the door don't come onto the "regular" floor leading to the "regular" dining room, the reception area for guests and the front desk. 

On rare occassions, I've seen one or another "resident' of this special "Place" walk through the door with a family member and into the light of day, the reality of the facility beyond the area behind the closed doors.

A tall fence surrounds the outside of the unit. Supposedly there's a garden, places to sit where residents of this "Place" can move into the "outside world" but only when allowed, when the door is "open".

Isolation. Setting aside. For their own good, their best interests. 

For some, this is a good alternative. A dear friend living in a facility and my own mother have had the experience of living with roommates who were well into the advanced stages of Dementia and whose actions and activities warranted more supervision and separation.

But how much can you really do to "remove" someone from an environment to change that environment?  Sometimes, what's needed for our elderly just as for our youth is more individualized supervision, more guidance, more time from someone who cares to supervise and guide their lives.

In reality, there's no difference between care for our aging population and care for our children. The difference is in our society's priorities and what investment we choose to make.

If we believe there is no benefit, no "long term" receipt of return on investment, there will be none.

 As long as we see the older population as "terminal" and "just waiting to die" and don't realize the benefits their wisdom, experience and ability to learn and grow provide for even the youngest of our society, we will continue to lose the benefit of one of our greatest national assets -- those who have learned, those who have taught and those who continue to teach.

I witnessed the benefits Mom had when she was in an Adult Day Care next door to a children's pre school unit. The children were sometimes integrated into the activities of the older adults and when they played outside, the two "yards" were visible to one another. 

Think about it:  we move from childhood into adolescence and adulthood. We're told one of the greatest steps we can take is creating a family. We celebrate life coming into the world and families become "extended" with grandparents, aunts and uncles,  cousins and friends.

Then we grow to a certain age and we separate and segment. We believe growing older is reaching a point of being cared for more than cared about.

We separate, isolate and eventually only occasionally connect with or contact by the most convenient way for those who are mobile, those who are active, those who have "lives to lead" outside the walls of closed and often locked doors.

Is this how you see your life? Neither do they and neither did they. 

It's time to rethink, reassess and replan our "Platinum Years".

Tuesday, November 10, 2015

Who Cares?

Happy Days Are Here Again . . .

Technology will provide for all our wants and needs.....

Robots will do the work while we enjoy .....

Reruns of "advertorials" commonly shown in the form of classroom "science" movies (generally produced by large companies heavily invested in producing economic change and advancement) were shown starting in the mid to late fifties to showcase the homes, the cars, the highways and life as we would live it "before the turn of the next century" -- meaning, of course, into the year 2000.

Most of it didn't happen.  Much of it we're still being told is "just around the corner" in a few more years, it will be here!

YouTube and other venues proclaim our "soon to come" lives of more ease and convenience

Self driving cars, robots that will clean our homes or run our businesses .... why we won't need to lift a finger and we surely won't need to worry about any medical challenges or physical infirmities because...

there's an AP for that ... an Assistance based Personal program or provision.

Science Fiction becoming daily life?

When did we step into the pages of those long ago Science Fiction Comics or novels?

What happened to "the fruits of our labor" concepts?

How about a "good days' work" and "contributing to the family or to society"?

What form of economic change will it take to open our eyes and allow us to see we've turned away, walked away and often closed our eyes to so many challenges "others" have.

Oh, we donate and we contribute but how many truly add the level of commitment of ongoing involvement?

Where have the voices raised by the children of the 60's gone? Are they growing older and less audible and are we focusing on the "capable" and "outstanding in their fields of endeavor" so as not to see what's really ahead?

Who will rise to speak again?  The Millennials?  Those held back and those who may be shackled by debt from education not resulting in employment and many of whom are still reaching up, reaching out and trying other ways to "have the American dream" realized by so many just a few years older than they are.

Two eras of births in our immediate family:  Generation X and Millennial.

The older had their college dream realized; they found jobs; they started their climb into "arriving" at a place equal to their parents or beyond.

The younger has struggled with the challenges of caring for a father and grandmother. Challenges not shared equally by her siblings. 

Was it because she was "the girl", "the daughter", "the grand-daughter"? Because the others "lived far away"? 

Or were those the easy ways to explain their ability to move on, to get ahead and to grow farther and faster than she may be able?

She's not angry, resentful or in any way negative about the situation. 

She's not alone. 

Others in her generation are struggling for other reasons and together they're creating a "new generation". 

Their generation is defined by "New Economics" and forces not seen since before the "Baby Boomers", their parents and grandparent's generations.

I see this group as just beginning to define itself and not be defined by those who do not know, who do not see and who only want to "categorize" them as they used to those in my generation -- as a group, as numbers, as statistics.

Now we replace our parents as they depart -- each generation in its own time.

Who's writing this his/her/story, anyway?  
You and I or "they" and "them".

Take note, Gen X'ers and Millennials -- the only real difference is where we are in the great scheme of things that are and are to come. 

There will be no difference unless YOU make the difference. 

A tale as old as time . . . 

Friday, November 6, 2015

The Answer Is Blowing In The Wind on Lewy Body Dementia

Lewy Body Dementia, the dementia of many masks, is beginning to be recognized but not yet talked about as frequentlly as Alzheimers.

Could the answers to this formidable opponent, this destroyer of so many capable and gifted individuals like Robin Williams, Casey Kasen and others not recognized, be within reach -- through more investigation of causes of death and less acceptance of typical diagnosis of Alzheimers and other illnesses causing "brain damage"?

My personal belief is this form of Dementia, LBD, is far more prevelant and may hold the key to other Dementias as it appears to be slower moving or at least less effacing of complete skillsets and abilities. 

It also appears the brain may try to "heal itself" by redirecting messages and "requests" for various actions and spoken words, for a longer period of time than Alzheimers.

My comments in this blog are from the extensive ability we had to live with Lewy Body Dementia as it was developing and to see the results of LBD unrecognized, undiagnosed and working through the challenges of medical professionals, Government appointed Adult Protective Workers, individuals with Masters in Social Work and others being closed minded and non proactive -- non focused on the individual, the situation, the family unit. 

And, as life continues, faced with two immediate family deaths in a relatively short period of time, I post now to celebrate their lives, to celebrate our lives and to believe shedding light on the challenges of living with Lewy Body Dementia is a journey needing telling.

The celebrities had financial ability and families who could live with and try to manage the changes brought on by people who were truly fighting for their lives, for their "selves",for the people they believed they still were even while this "phantom" disease crept deeper and deeper into their very beings.

Yet, they too, did not see, did not realize, especially with Robin Williams, how devastating this disease is for people who functioned highly, were exceptionally capable and could not control, could not minimalize or change what was happening. 

Out of control. That's how they felt. When they had the ability to realize something was happening. Some respond with anger, some respond with despondency and others respond as Robin Williams did, ending what was happening in his own time, his own way.

Lewy Body Dementia needs the type of promotion and recognition of Alzheimers. I've been saying this since discovering Mom had the disease and since early 2013 promoting this to all who read our story.

LBD debilitates and undermines relationships and individuals; it is a cancer in its own right -- eating away at the body and being of everyone it touches.

LBD goes unrecognized and it may have related diseases of the brain we are yet to discover, identify or reclassify.

Whoopie Goldberg has spoken out for LBD.

The families of Robin and Casey are speaking up.

WE NEED MORE.  As a society, we need more. 

Each day our population ages; the world population ages. But aging isn't the cause of LBD; it may allow the disease to progress more rapidly but it may be we all harbor this inevitable brain disease if given enough time.

Should we not want to add years to our lives in fear of this phantom, in fear of this unknown?  

Or should we work to ensure we continue to spread the word about Lewy Body Dementia and eventually find funding for this and other lesser known diseases which may be related, may have similar causes and all negatively affect positive relationships and lives.

Collaboration and not segmentation is needed. Sharing of findings, information, concepts, capabilities within the educational and research community. 

Aligning organizations in the fight against Dementia and related diseases working together, sharing and caring about each positive step, each finding that will reduce, control, adjust, or even eventually eradicate Dementia, in its full range, it's full effects, as has been started within the medical communities seeking treatments and cures for other diseases. 

Please tell someone today to visit the website on Lewy Body Dementia. Here's the click thru.

Tuesday, November 3, 2015

There Oughta Be A Law

QUIET. SO QUIET. It's all been "swept under the rug". My husband’s dead, so is my mother and I suppose when I pass, the only one left who really cares and remembers will be my daughter.

That’s the way we function as a society, isn’t it?  Time passes and injustice reappears because we take no real action to ensure the ongoing protection of those who can be abused, mistreated and neglected?

Any person who purposely files a false report of elder abuse or neglect is guilty of a class A misdemeanor at this time and when I was accused of Elder Abuse. 

WHAT ABOUT UNDUE INFLUENCE?  No changes there I’ve found.

Here's a resource I found helpful.

Undue influence is tied to financial exploitation but this article and others do not take into account the ability to use current practices by the Department of Health and Human Services, Senior Services, through their lack of training personnel and creating specific systems and procedures protecting the rights of the accused to ensure another "Senior" isn't falsely accused and a family torn apart as ours was.

As our parents grow older, so do we. Aging into the 80's and beyond often means the "children" are now Seniors themselves. Their resources are being used to accomodate a lower income level (for many) and their abilities may be lessened physically.

Yet it was the Undue Influence which caused our problems and set into motion the loss of hundreds of thousand of dollars of taxpayer money and the tearing apart of a family that for years had been self sustaining and contributing to these funds now being abused and misapplied.

Thankfully, there are changes coming in 2017 although why it takes years to increase penalties and correct gross errors in State Regulations and Laws after they've been passed, I do not understand.

Financial abuse will still need to be proven and with cash, that’s still going to be difficult if not impossible.

So, J, and others like her, will still have that “loophole” to crawl through and continue to prosper from their actions of Undue Influence.


Will you read but turn away or will you choose to look deeper into the problem and read for yourself your State's laws regarding Undue Influence of the Senior Population?

Will you carry into your personal life questions about how groups and organizations are run to ensure Seniors are protected through systems that do not take for granted someone's "accreditation" or "registration" as a professional?

Will you advocate beside me and others for higher levels of professional capabilities for those entrusted with the social responsibility of "protecting" Seniors?