LTC;s : Trash, Treasure or A Box of Chocolates?

Originally written May 20, 2014 -- Mom passed last January.

Life is like a box of chocolates, we learned in a movie. 

However, as one candy manufacturer realized, when people are given an insight, a map, of what's where with a description of each piece and its location, they sell more boxes of candy and the level of satisfaction with their product is increased.

For more and more people, no matter how well we try to arrange and plan, life gets in the way and takes out all or most of the dividers, supporters and weakens the container. 

While we would like to be "special" and "individual", we become like the box that's missing those special pieces providing the support and ability to maintain the integrity and individuality of each piece.

Life is also like going out on the weekends to various sales labeled: Garage, Yard and Estate. And then there are the formalized Flea Markets, Consignment Sales and Antique Stores.

So many choices, so little time! 

How to make the decision and ensure it's right FOR YOU?

At a Garage Sale, the surroundings are usually just as they're labeled, outside of someone's home and either in the driveway or in bad weather perhaps inside the garage. 

A yard sale can be in the back or front of a house.  

Pricing at both is usually in the cents and small dollar range with perhaps a few items of "greater value" -- lawn equipment, furniture, large pictures or some "treasures" priced a little to a lot higher, depending on the experience, knowledge and desire of the person to let go, get it out of the way or simply just "get rid of it".

An Estate Sale, however, paints a picture in the mind of the prospective attendee of cherished items now having to be "sold" or "parted with" due to need that can be financial or it can be simply due to moving or sadly, death. 

Sometimes "professionals" are hired to price, arrange/display and manage the entire procedure receiving a commission or fee. There's     a level of service, even of knowledge and certainly, of caring about managing the sale to benefit both owner and prospective buyer.

What's the difference?  You can often find the same items at each of these places. Some may be in better condition thnt others but some may be exactly the same. 

Our Elderly are being treated like items at Garage Sales, Yard Sales and a few are privileged to receive Estate Sale status. 

It's all about how much you can afford and for how long. 

It can also be about your willingness to change your life early enough to invest in a level of care that changes as your needs change -- with or without Long Term Care Insurance. 

Choice depends on the challenges in life you face and how they deduct from the bottom line you've laid & plans you've made. 

It's about the willingness of families to support members through providing levels of increasing care and support either in a separate residence or within the family home of the younger members.

Looking around our area, I see many more facilities that are Independent Living with a few also having Assisted Living. 

How they define their care is somewhat dependent on their State's Laws regarding these facilities but it's also dependent on how much money the individual has as to when they change the definition of care they're willing to provide -- or the physical condition escalates to where constant supervision and medical care are necessary.

My experience over the past half dozen years entering into this "nightmare" of eldercare using funds or support/assistance beyond what we could personally provide or my Mom could financially afford, has shown a high level of want and need by people who are wasting away waiting for the end to come while trying to make the best of each day never knowing what level of care they'll receive.

Large groups of our most aged elderly, those 85 and beyond, are entering facilities where they are more dependent on others.  

In Mom's facility, within six months of entering, people went from a walker to a wheelchair and no real effort was made to strengthen their muscles, ensure their balance or oversee their needs so they could remain upright and walking. 

Focus was on control, not wanting movement as that meant more work and responsibility on overloaded and overworked Staff.

Mom's facility didn't provide one on one "movement" intervention; an occasional "activity" perhaps once a week, residents had to get there. 

Personalized Care might be in the directives of the State Guidelines for residents of Long Term Care, Skilled Nursing Facilities but no one really cares enough to ensure it's being provided.

COMPARE & CONTRAST ENTRY IN THE WORLD VS EXIT

WHAT A CHANGE.  We can't wait for a baby to take their first steps, to become independent and to take care of themselves. 

We spend years as parents getting them to be "competent" and "capable" and then take away their ability to move freely, make choices about when, where and what they'll eat or do and throw them in with a complete stranger who may have serious problems or just doesn't like "sharing" and so makes life very difficult.

NO CHOICES.  As a facility resident, you get what you're given. 

It's up to you or to your family or friends to make the area more "liveable" where the facility choses for you to live.  

A closet with a high bar to hang your clothes on?  

Well, you just have to "ask" someone to get what you want. 

It might take an hour or an entire morning.

Eventually someone will answer the call button.

Someone will make sure you're dressed for the day--eventually.

Marketing and advertising paint a picture of "gourmet" meals and show "caregivers" walking alongside, sitting beside and providing varied assistance and caring. 

Dare you to visit on a regular day when there is no special program, no expectation of family or friends visiting (no weekends, no evenings, no holidays or dates close to these times) and see the reality of Senior Care which is quite different from what is publicized.

TOO BUSY.  Some are definitely overworked due to understaffing by facilities that do not consider personal care needs important and base their "worker scheduling" on "medical needs". 

TOO TIRED. Short-staffed, double shifts, extra responsibilities.

Here's the reality of life in an SNC: 

You might not be able to stand and reach something you want/need.

       May need assistance getting on or off the toilet, 

       getting into a "medicine cabinet" placed well above your head 

         for a toothbrush and toothpaste, deodorant or other items; 

       might not be able to see yourself in the mirror in the bathroom                

       while seated in the wheelchair because it's hung so high; 

        may not be able to maneuver your wheelchair in and out 

         with the trashcan that's placed against the door to the bathroom                      to hold it open because it always swings shut 

without the weight of the can against it; you may not be able to remember where you put those personal care items you remember now and again you'd like to use; drop something under the bed and see how long it takes for anyone to notice; misplace anything and have staff tell you "they'll take care of it" only to never see it again.

JUNK. GIVEAWAYS. TREASURES.  How do you want to be classified when you need to live in a Long Term Care facility?

HOW DO YOU WANT TO BE TREATED WHEN FRIENDS AND FAMILY AREN'T THERE?

Most Importantly:  How are you going to ensure you receive a level of care consistent with your personal needs and beneficial to providing a life that's worth living?


 

Dying, Death, Decay: Natural Yet Unwanted

It's Spring...supposedly....with temperatures mimicking early Fall. Unnatural? Signs of changes to our planet? Doom and gloom? Death watch?


The flowering trees in our area this year were extraordinary. Remembering the bitter sub zero weather for longer than almost anyone can actually remember; Mom could have because she was 99 when she passed, it's amazing we had such a vibrant and amazingly beautiful Spring.


As each floral awakening of buds and bushes occurs, I wonder at the beauty, of the survival of the plants through such difficult times. Plants and people. Both amaze me.


Mom lived during times when there weren't shots for measles, mumps and other childhood diseases. Survival of children beyond the age of five or six was often extraordinary.


Mom's nine siblings all survived into adulthood and her brothers, six of them, each lived many years beyond their service in World War II. One brother did go to Canada, the "baby boy", where he served in their Mounted Police; I've no one to ask about this choice now as his wife and daughter are both gone and the son who survives served in Vietnam and has become quite the recluse.


What are the odds I'll live as long as my Mom and Grandmother? Ages 99 and almost 91, respectively? They weathered life's challenges; the stress and the losses. Each worked hard and each worked at living daily lives challenged by late in life Dementias. Will that also be my fate?


My beautiful bouquet of roses sent by my youngest son have almost all drooped and shown through falling apart their time has come and they are no longer "living". Six are left; three white, two pink and one mauve. Our family numbered six: my husband and I, our three children and Mom.


These too shall pass, I tell myself. Time will take its toll. Before we realize each of their time has come it will be here and those remaining will join them in their own time.


Unwelcome and unwanted, dying and death visit families. It brings a bittersweet time for those remaining. We want to be positive; to "know" we'll meet again if we have those beliefs, but for many it becomes surviving in the here and now that presents as much challenge as dealing with the then and when their loved one(s) departed this life.


Ashes to ashes. Dust to dust. Not a great thought, really, when you consider the process. Who wants to think about those passages? Few I know do.


Yet we see new sprouting from old; life extending through what appears to have ended.


Life continues to surprise us in its ability to go on and to return.


Hope. Faith. Love.  Basic elements of life. Basic concepts of death.


Life is truly a circle. As I move around this shape I wonder when and how I will complete its path. And as I go, I can only live each day reminding myself I make this circle in the here and now and each day I complete a part of it.


I pass along to my children and their children and perhaps someday, if I follow in my mother and my grandmother's footsteps, I'll be able to pass along to my great grandchildren, what has been given to me: a love of and respect for life and a desire to create a life that has meaning each day that I am given.


Dying, death, decay, are natural yet unwanted but a little easier if we are fortunate to live a life of sharing and caring for and about one another during all the days of our lives.

Roses: Symbols of Death and Symbols of Life

Reminder to self: on special days, check front door. Youngest son, always thoughtful, may send flowers. Not a good idea in 80 degree weather to have two dozen roses, no matter how "young" when picked and well wrapped, sit in blazing sunlight for a day or even two.


They are beautiful. Red, pink, mauve and white. Elegant and simple; most surviving but a few showing their ordeal through wilting in the earliest stage of their unfolding.


I've always loved flowers. It's one of my earliest and best memories of childhood. I used to not look forward to visiting my Grandmother because the drive took well over an hour and our car didn't have air conditioning so it was really uncomfortable in Summer. Stopping, on occasion and not always because money used for buying ice cream wasn't commonplace but a special treat, was always part of my "wishing" as we drove back from our weekly visit to Grandma's house. My grandfather passed when I was quite small so I remember my Grandma more than I do him.


Grandma would manage to stew a chicken, another luxury both for her and for us, and in the Spring and Summer, she would always tell me to "Wait just a minute, dear, before you leave. Let me cut some nice, fresh flowers for you." And she did. Lovingly gathered remembrances of a woman quite old (to me) with many grandchildren but always making me feel special with this parting gift. .


My Grandma would wrap the flowers in a wet rag and if I was lucky, some of them would survive the journey in the blazing hot car with windows rolled down making the back seat, where I sat, more like a wind tunnel where you hung on for dear life. Didn't have seatbelts -- back in the day.


She passed at almost 91 when I was pregnant with my first child, a son. I flew back to Mom's from Michigan where we were living; a very rare treat because flying at that time was not like it is today; women dressed up and so did men; it wasn't like a bus ride, it was a very special experience


Grandma had "common" flowers and those that mainly bloomed year after year. Her garden was on the back of her house but that was the entrance you used because that's where the gravel driveway was. Driving up the short hill that led to the house we'd pass a shed that had a sharpening wheel sitting prominently outside. Grandpa always kept his tools well sharpened.


A little farther over sat the most dreaded area I never wanted to go near but always had to pay a visit during the several hours we'd spend at Grandma and Grandpa's -- the outhouse.


The smell of that area will never leave my memory. And the insects! I hated the idea of going near it by myself and always begged Mom or Dad to go with me, hold the door open a crack and be ready to swat or step on anything that ventured near or (shudder) into the "two seater" where I held my nose and tried to ensure no piece of clothing got near anything it shouldn't.


I remember a concrete walk, short in length and poured by two of Grandma's six sons; they wanted her not to have to walk in dirt or mud when she had to use the outhouse. It didn't go all the way to "the facility", but it helped, I suppose.


As I've grown older, I can't imagine how she did it for as long as she did; she was about 87 when she moved from that little house to live with one of my Aunts. Or maybe she was a even older. I remember it wasn't long after a Spring or Fall when she chopped down a tree next to her house that was getting too big and she couldn't seem to get any of her "boys" to get to doing it, so she did it herself. The trunk was bigger than my fist is today. Did I mention we women are determined and some say "strong headed" in our family?


My Grandma lived to be almost 91 and my mother lived to be 99. What they saw in their lives; the history, the discoveries, the changes!


Roses recently have been for funerals. Red roses for my husband; deep pink roses for my Mom.


My husband gave me roses, red ones, several times during our time together; while we dated and when we were married. Pink roses, a shade deeper than the colors of their dresses, were carried by my bridesmaids; the maid of honors dress and roses were an even deeper shade.


Roses for a special Valentine's Day when my then "boyfriend" had already graduated from the college we both attended and was living in Michigan working in his first job; red roses; one of three bouquets delivered at the house I shared with three other girls. What a day that was!  We screamed, we cried and we felt so "special". I'll never forget that day.


Roses. A white rose I handed to my mother and a pink rose taken at the last minute from the bouquet I was laying in front of the statute of Mary; I walked over and presented them, one at a time, to my Mom and to my husband's mom as my new husband walked with me.


We walked together for decades. Now I walk alone but still beside his memory and with our daughter who in so many ways resembles us both.


I've raised roses. I've raised many types of flowers. I've become my grandmother.


Mom never really had a house before she came to live with our family. Once there was a short rental of a house but that only lasted a few months; flats and apartments didn't have flowers or space to plant anything. Mom loved flowers, though, and every chance I had, I'd put them in her room when they bloomed in our garden or get them from a florist, just to say "I love you, Mama".


Daughter and I always found a way to take a flower or two to her in the Skilled Nursing Center even when she wasn't "liking us" or turned away and followed the Undue Influence of her abuser, Julia.


As I've begun to write. I think the healing process is finally really beginning. It's been a long time. A time of complications and many challenges. Three deaths. Three times to begin another mourning process.


Flowers. For my husband. For my mother. For our beloved family pet, our cat.


Flowers for Mother's Day. From a son who's always been thoughtful and whose gift of love is seen as a gift of life and love at a time when these symbolic flowers have for so long in my life been symbols of love lost, love set aside, love buried yet always within and surrounding.


Thank you, my son. Thank you, my daughter. You are living gifts of Love.


You are roses in my bouquet of life.

Three Times Three: Screams of Guilt Beginning to Subside

Gone but never forgotten: three years for my husband and daughter's father, three months for my mom, Grandma, and three weeks for our beloved family pet, our tabby cat, a family member for two decades.


At a Green Day event last week, I was standing at a table with a local provider of used medical equipment about donating a wheelchair and walker and some other items. A woman walked over and also asked about donating.


Two people who may never have met except in this way with so much in common: she lost her husband two years ago, she lost her mother two months ago.


She mentioned how no one prepares you for this part of life and how challenging it is to make your way through each day until suddenly you realize how much time has already passed since the life changing event actually happened.


She'd just started back to work; I was returning to work in the field I'd loved for so long and made my professional home, where I'd not had the courage to apply since my husband's death.


We worked together for so many years in this field and I needed to grow in another direction before I could return to prosper growing where I'd been planted and thrived for so long.


It's a large company and chances of meeting this person except for this particular event might have not occurred for months or even years.


We talked, the woman and I; not for long but for long enough to exchange contact information and hopefully keep in touch. If not, this chance meeting served a much needed purpose for me and I hope for her.


On the surface, it was like looking in a mirror -- the reflection of someone looking back who had been formed by so much personal loss and survival.


Now I can share. Now I can compare. Now I can talk.


I've begun the part of my life's journey where I contrast and perhaps settle the still continuing "what ifs" and "if I'd only".


They used to scream at me, these feelings and thoughts, about what I might have, could have, should have --- done, said, been.


Words or actions I believed would have stopped, changed, delayed, redirected -- or any other adjective or adverb of change for what inevitably did occur and over which I and they had little if any control in the outcome and result.


In reality, daughter and I did the best we could, at the time and under the circumstances of what we knew, were told and could do. But when it comes to end of life or even the journey moving in that direction, there's always those lingering "what if" and "why" that continue to fly around and pursue you long after the times have passed.


I am grateful for small things:


Memories we made and did not wait "for another time, another place, more money, more time ...." to make.


Reaching for "stars" and willing to dream and turn them into realities.


Including many in our lives and in our hopes and dreams.


Taking chances, seizing opportunities and being willing to walk alongside others on rocky roads, bumpy paths.


Together, finding ways around what seem to be dead ends in roads less traveled.


Making mistakes -- they gave us the opportunity to see the strengths and abilities we built together to overcome, outdistance and go beyond while learning and growing as what we were -- individuals and a family unit.


Treasuring one another and measuring one another not by other's standards but by standards passed down by generations who preceded us and who will follow:  faith, hope and love.

First Mother's Day Without My Mom is Bittersweet

Today is my first Mother's Day totally without Mom. She chose to be buried in a small cemetery near where she was born and spent the early years of her life. It's more than an hour's drive one way to visit her grave.


We were the only ones following the hearse in January to take Mom home again. Daughter and I driving our car and praying we'd make it knowing there were repairs that really needed to be done but we couldn't afford.


Sons came in from their homes across the country bringing their families; my grandchildren and Mom's great grandchildren. They chose to not follow the hearse and understandably so as the children needed something to eat before the long afternoon and one family's extensive drive home the same day. 


We'd had a short two hour "wake" for Mom that morning and some family and friends came to pay their respects. Then, we were on our way to take Mom to the church where she'd been confirmed, for our final goodbyes with Mom's family members who lived in the small town and surrounding areas.


As a young girl, Mom went to work in the "big city" to provide for others still at home. She sent them money and bought both necessities and gifts for her family.


All her brothers went to serve in WWII and Mom served alongside so many other women working in factories and supporting the war effort.


Mom's one last wish was to have Taps played at her funeral.


Military protocol would not allow this last salute to a woman who served her country the only way she could at the time -- building the equipment used by the men flying missions both of war and of mercy thousands of miles from home.


Daughter brought a recording of Taps on her phone and we stayed after others had left. Grandma's last request was honored.


Later that evening a cousin called. The one we'd asked to play the Taps; Mom's Godson and one of a few remaining real buglers playing taps at funerals.


On his own, as a "private citizen" he returned before sunset to the gravesite with his bugle and paid tribute to Mom. 


I cried when he called and I cry when I write this; thankful for those who care and find ways to celebrate life when others put "protocols" in the way blocking recognition of an under-recognized War Service -- women who supported our country in the only way they could at the time.


Mom received another tribute daughter and I will cherish all the days of our lives. To understand the depth of meaning of this event, a short return to the time before Mom's death, after my husband's passing, is inserted:


After my husband passed and was buried, about two months later we had a visitor we'd never had before. A hawk, a large, beautifully graceful and magnificent creature who flew directly into the towering oak tree that now stands more than forty feet tall; a tree that was a cutting from a backyard tree my husband's father had planted in their backyard decades before. 


Dad "rooted" the cutting and gave it to us a couple of years after we bought the home we love so dearly today. It's now as tall as his tree was then.


The hawk faced the house and I could almost see directly into its eyes as I stood at the kitchen sink and looked out the window. This was the window where I'd watched my husband and our sons and daughter work and play, my father-in-law catch fish in the small pond and the amazing changes of the seasons passing year after year after year.


At first, I was amazed seeing the hawk simply because we'd never, in all the decades we'd lived in the house, had a hawk come to visit. Deer, raccoon, geese, ducks, neighborhood dogs and even a rare coyote and once an owl even became entangled in netting daughter placed over the vegetable garden she'd planted, but never a hawk.


Birds of all types flew in because of the small pond and other non water fowl built nests and had their young only to fly away and sometimes return as adults to start the cycle of life again.


We would always find spare pieces of bread or purchase birdseed (when we had money to spare) and share with them. Some would visit close to the house, especially the geese, who almost "knocked" on the door (actually one did peck at the door one Spring) asking for us to take notice of their return and bring food for an expectant mother goose or their recent hatchlings.


So, this appearance of yet another wild creature near our home came as no surprise. What was surprising was the "vigil" it seemed to keep and the way it would come and go.


Over the months after my husband's death, the hawk would come to visit on a regular basis, arriving when I was feeling down or reaching my wits end trying to survive yet another crisis; it would perch in the tree and look toward the house. Its appearance always seemed to coincide with my overwhelming sense of need to return to the time when my husband was beside me and we would "get through" whatever life threw our way.


After a while, I started asking it to return when it hadn't appeared for several days, as I gazed out any window that faced the tree. I'd tell the hawk how much I needed it to return, needed a sign my husband was still with me in some way. Amazingly, my spoken or unspoken request would result in a visit.


I came to see the hawk as a sign of everlasting love enduring and eternal.


The severe winter and Mom's advancing Lewy Body Dementia took great tolls on our everyday lives; we saw our time with her as becoming less and less.


Then, what seemed like suddenly but had taken many weeks, we were on our final earthly journey with Mom/Grandma/Great Grandma keeping our vigil, journeying with her as life allowed, alongside her during her days/nights of passing and then to her final resting place.


I drove our car immediately behind the hearse, just as I'd done when my husband passed, my daughter sitting beside me as she'd stood beside me during the challenges we faced with two lives moving in this final direction.


Mom passed on the third anniversary of my husband/my children's father's burial; both were buried on a Monday and both in the first days of a new year on a day in January that wasn't typical even though the weather before their deaths was cold and very wintery.


We stayed close as we drove because we hadn't been told the route we'd take but knew we had to go from a small suburban community near where we lived, over several roads to a major highway, across a bridge spanning a large body of water. This was our final journey with her along a roadway into the past, a small town that to this day remains almost the same as I remember from my childhood.


To get to the main highway from the funeral parlor travelling from the city and state where we/she lived for so long to the hometown area/state where she would be buried, we had to go to a road widened many times to accommodate growing neighborhoods and traffic. Access required a right turn and a sharp somewhat long descent onto a ramp, a half cloverleaf, and onto the roadway.


Daughter and I were mostly silent as we followed the hearse. Two remaining family members there for one another as we'd been through one death and now travelling for a second time the familiar but unwelcome road of final departure from this earth and life together.


Following closely, emergency lights flashing to let others know we were with the hearse. No sign on the car that we were a "funeral". Just the three of us as we'd been for so long during Mom's journey with Lewy Body Dementia. Others came in and out of our life but we three were the "warriors" who suffered, endured and tried to overcome the effects of yet another life challenge to our family.


Moving in unison with the hearse, we both began to edge onto the roadway leading to the final highway journey taking us to where Mom would rest.


From our left we caught sight of the largest and most magnificent hawk, even more impressive in size than the one who visited regularly after my husband's death, flying on a downward path that brought it directly over the hearse from one side to the other within inches of the top. A dip of one wing was visible as we watched this amazing final tribute.


This unexpected, silent and quick appearance was followed by what seemed like a disappearance almost into thin air. Daughter and I were both amazed and each questioned the other about what we saw.


It was real. It was amazing.


The day before, visiting with my second son and his family at the hotel where they were staying, I shared the story with my oldest granddaughter, who'd just turned thirteen, about the consistent visits by a hawk to our home


When we were at the church before saying goodby, my grand-daughter turned to me and said, "Nana, I saw two hawks when we were driving here. They seemed to follow us for a long time."  I told her Great Grandma and Dad were watching over them now, together, as Grandpa did for so long by himself. Then, we shared the "fly over/salute" given Great Grandma by the single massive hawk on our way to the church.


Now there are four generations of women following in one another's footsteps. This great grand-daughter like her grandmother (her Nana), her Nana's mother and her great-great grandmother all carry the same name. Not always as a first name but definitely as a "namesake". All shouldered what life gave them putting family first. Character and integrity important in their lives.


I look forward to how she'll carry forward the legacies of the women she's named after. I look forward to how life and love will mold her and make her the person her daughter, grand-daughter and great grand-daughter will someday share stories about. 


Mom is in my thoughts a lot these days. Especially today, being Mother's Day, as well as yesterday, the third month anniversary of her departure from this life.


Love. Hope. Faith.


Memories of Mother's Day and other holidays, joys and even some sorrows, challenges faced and overcome and even tragedies that only time could repair or replace.


Each day we write our life's story. Today and tomorrow are filled with opportunity and the prospect of another day.

Three Deaths; Three Restarts; A Family Unit Survives Outside Challenges

When my husband passed, I felt like I was living in a form of gelatin. The world around me seemed to be there but it seemed to be varying in consistency and moving ever so slightly in varying directions over which I had no control.
 


I felt like I was functioning at the time. I moved forward but I always felt like I was leaning backwards in time and space or at least living on a slant. To all appearances, I was "moving on"; making decisions, taking actions and even showing some "progress" into a new life forever changed through circumstances beyond all of our controls.




Grief, I believe, isn't definable by someone's deciding there are stages or types and everyone goes through them. For me, grief has been a constant battle as it was so many times in my life to survive, thrive and manage odds and situations beyond my control. Times on my journey I would not choose and did not want but also could not avoid.


Personally, I didn't want to join or attend a group dedicated to grief understanding and/or recovery. Not for me. Also not interested in a group for survivors of anything including the death of a spouse.


Possibly because I had support and gave support living each day with a family member who walked the same path, lived the same journey and understood enough to be both supportive and needing support. We reached out but not to join others in the same circumstances.


Instead, we reached out to find out, to be there for those who remained and those who needed us and who we also needed.


Right or wrong, we've travelled the distance. Surviving outside influences and actions that could have destroyed who we were, believed we could be and wanted to be.


Looking back -- always easier than looking forward -- what we chose to do, what I chose to do, may not have been agreeable to others and they might have seen our choices as unrealistic and even pushing us farther down in life.


Not so. We chose to keep our home despite it taking every penny we could find through making choices to sell items we felt would provide for that need. Oldest son isn't speaking to me and has withdrawn all contact with his family including his children. That's his choice. He's always had challenges and in my opinion finds faults, real and adjusted viewpoints, to mask his challenge of dealing with his own life decisions and actions.


Our home gives me solace. Even with its mounting challenges in making mortgage payments and holding life together. I've been able to get jobs and so has my daughter. We've taken whatever we could to hold our life together. And, that is the focus for the two of us -- our life together. We make the decisions, together.


Many cannot understand this choice. Many her age are torn apart by the media who call them "boomerang kids" -- those who return "to the nest" to live with their parents.


We just never stopped living together in our family unit that once included her grandmother, her father, her mother and her.


I had a conversation recently with a young man where I work who's chosen to return to live with his parents for another personal family reason. He has a job; he could make it on his own; instead, he chose to provide support when it was needed by his presence and abilities greatly needed by his family.


In my mind, that's a sign of personal courage and integrity not to turn away and go on with your life but to see the need in others lives; a definition of family in the past and for the future.


That was what my Mom did all her life and even though she never really talked about all she did for family members well before I was born, I saw through her actions and heard in her words during our trying life times how important our family unit and her family remained to her.


A legacy my mother gave me: 
                 Look outside yourself and live and give to others.


Death chose how to redefine our living arrangements; it was not a choice we would have made. A family of four (plus one amazing family pet, our cat) now down to simply two. I have faith, though, this change will continue and as time moves forward we will regrow through a new addition of a like minded person who will add greatly to daughter's life and my own.


Decades of making choices including others best interests while allowing them to come and go, leave or stay and always freedom within the unit of the family others seem to have difficulty understanding. That's the basis of many "Gen X'ers" lives we seem not to want to see. These are the nonselfcentered, nonselfserving young men and women of a new generation.


Get real, media!  See the positive effects of a society that has an inner strength in supporting the family unit in ways those who travelled life's difficult roads have done. Families come in all shapes, sizes and types as we're told.


Start accepting the differences in lifestyles chosen by those who "return to the nest" and give them the support and positive recognition they deserve!

Lessons Learned from Living With LBD & Being the Survivors

Daughter and I have one another. For this, I give thanks every day.


We've kept our home, a constant struggle economically in these most difficult times. Not working for as long as I did caring for Mom and my husband took tremendous tolls on what we'd saved and what we had.


Learning that choices made along the way of life may seem for the best at the time, may remain positive as the years pass while still causing great upset and difficulties.


Understanding some may never understand the value of what we chose to do as having the significant value we see.


The work I've found and daughter's found, often just in the last moments when we were "going down" for what we thought was the last time.


Struggling isn't always a positive action. It's never "fun" to wonder where and when the basics of life will be there or how you can make it to and through the next challenge waiting around the corner or behind the next turn.


Been there. Done that. Didn't want to again. Not my choice. Realizing I was too long away to truly understand. Down, but not for the count. A hand always reaching out from unexpected places and people, holding onto ours sometimes for a long time and sometimes for short periods but always there when we need it even if not the way we felt we needed.


Knowing I would do it again. All of it. For each of them.


Learning about people and especially family members and some friends. In the beginning they're there but then they go away. It's all right; it's difficult for them. They don't know how to act, what to say and certainly not who we really are. Their lives, too, will change in many ways as they travel life's road.


Survival is more than money.  Caring, sharing, discovering inner strengths and outer resources.


Taking even more pleasure in daily life "freebies": beautiful sunrises and sunsets; amazing weather; food, of any kind; finding extra change and knowing you can get gas to go to visit Mom yet another time before she leaves this life.


Anger comes along for the ride, too.  Frustration tags along. Disbelief in systems and people who should and could see, hear and speak up, IF ONLY .....


Realization life is personal and private while being up for grabs in the social media world we live in.


Despite one son's claims, I do have value, I have succeeded and I will continue...


Sadness for those who cannot or will not set their "egos" aside and see others needs and dreams.


Joy despite sorrow. Laughter amid the tears. Faith continuously abiding. Love eternal and beyond life as we know it. Hope for tomorrow here and tomorrow there with both sides giving Life.


These are some of my daily lessons and I know there is more to learn.

Eating, Being Fed, Dining .... Vast Differences

Mom and our cat had some basics in common -- eating was one of them. They both loved food, had their favorites and enjoyed eating alongside others.


As long as we could, while Mom was in LTC/SNC at her second facility (this opportunity did not exist at the first), we'd stop by and "dine" with her in the cafeteria where we could purchase food and eat with her.


Or, we'd bring homemade meals and sit outside at a picnic table under the trees alongside the waterfall -- admittedly a wonderful and soothing place (donated by the facility Auxiliary).


Yes, there were features to Mom's second facility which, on the surface, provided ambiance and seemed to promote "family" and "friendship". Sadly this appearance did not permeate the facility into daily individualized care as it's supposed to do.


We knew the diagnosis and these times were very limited. We felt guilty because we were both trying to work (with only having one car for transportation) and cope with the challenges left behind by the damages of Julia's Undue Influence and a really sour economy.


My age and having had my own business for so long turned out to be very detrimental factors; settling for minimum wage while trying to maintain a home and all the other life expenses was often stressful and even demoralizing.


Daughter's leaving college to help care for her father as he was struggling and eventually lost his battle to stay with us and her Grandmother's growing physical, emotional and psychological challenges, made getting anything but a minimum wage job impossible and ditto for the horrid economy.


Without a college degree and in a still declining economy back in early 2011 when my husband/her father, passed, and into even now, has presented challenges as rough and difficult as both their illnesses and deaths.


So we treasured those times with Mom visiting and sharing a meal and the other "plus" was the very, very low prices of the food which on our more than limited budget where every penny, nickel and dime counted, there were times when we just sat with Mom and she ate and we went home to find whatever we could but at least we were with her.


Cat, too, loved to eat -- until a few weeks ago. She had her favorites and could be "picky" when offered something she felt wasn't what she wanted. And as time passed, this became more and more apparent.


Now, like Mom, our cat is losing a lot of weight and she's not eating and having more "accidents" as well as more than the usual spit ups (used to be hairballs and now seems to be liquids or solids that don't agree with an ever increasingly difficult to digest internal challenge).


Notice similarities in our cat's approach to food and eating with Mom's and other people who sat in the dining area. They were in this "special area" on the same floor where their rooms were and where many had to be supervised, most didn't have the mental capability to make the choice to be fed in their rooms and none could get "downstairs" by their own power as was definitely necessary. And, some were physical and mental wanderers who needed but did not get more supervision and so being on the main floor with an "outdoor" automatic exit was not in their best interest.


In some videos on YouTube and other places, some self proclaimed "experts" in caring for the elderly and even some recognized experts claim the person who refuses or finds ways not to eat is telling you they want to die with this action.


NOT TRUE.  Watch and listen closely and carefully. Be highly observant and perhaps you'll see what we saw. At Mom's facility, they were greatly understaffed and often took residents into the upstairs dining area as early as 4 PM. These were people who could not get there on their own. Shift change, by the way was at 7 PM -- something to remember.


DEMORALIZING AND LESSENING DIGNITY THROUGH WHAT IS SAID AND DONE CAN CAUSE CHANGES IN BEHAVIOURS INCLUDING EATING DISORDERS.  Think bulimia and anorexia as well as the opposite, gorging.


Dinner was "scheduled" to begin at 5 and last for an hour or so -- at least that was the practice in the main dining area downstairs for those who could remember what time it was and who could get themselves into the elevator and down into the lobby.


Must admit the ladies who manned the front desk were most helpful when residents did make it that far. However, on the floor where they resided, it was a totally different story. If residents received any assistance it was because there were aides on floor duty who cared enough to help and weren't busy tending to someone's personal needs.


Upstairs, people didn't sit down and have dinner served to them. People waited. On more than one night I watched as dinner plates were made up, ONE AT A TIME BY ONE PERSON who was obviously not in any hurry. These were put on trays and delivered to rooms -- one tray by one person and usually there were only a couple of people doing this task.


AFTER ALL THE TRAYS WERE DELIVERED, the singular person began to put together plates for those still waiting in the dining room -- one at a time, of course and no hurry.


Apparently this was "protocol" in the facility because down in the Main Dining Room (funny name since the real majority of people on the two floors using this facility ate in the Dining areas on their residential floors) the same "snail's pace' was followed with only one person plating and serving.


Daughter and I were amazed how slowly one person in the Main Dining area could serve between ten and fifteen people.  First it would be going to one person, asking if they wanted soup or salad and then going back and putting that one order together. Returning to that person with the requested food.


NEXT PERSON; NEXT ONE SERVING. I've watched as the clock ticked off 45 minutes and only the first course was totally served. And, the majority of the time people had to sit, wait their "turn" or "next turn" and stare off into space because some sat at tables by themselves or with people with whom they had no conversation.


Once this round of soup or salad (most dinners did have a first course) was accomplished, it was time for the INDIVIDUAL DINNER SERVICE where the server went to first one person, asked if there was anything being served they didn't want, went to fill the plate checking to see if what they'd "plated" was correct on a "ticket" she/he was given, rechecked the ticket and slowly delivered the plate to the ONE person.


MEANWHILE, IN THE UPSTAIRS DINING AREA, ON THE RESIDENTIAL FLOOR:


Did I mention the residents were lucky if someone cared enough to at least get them something to drink to at least have something at the table while they waited?  Nothing to eat, though. Several nights we observed some of the residents, who could not feed themselves and even those who could, not getting any food service until after 7 PM yet many had been sitting there with nothing to do since 4 PM.


NEGLECT can cause an individual to not care and to not want to go on.


NEGLECT at every turn from no one answering your call light, making you sit and wait in the bathroom for half and hour or more, "forgetting" you need help getting dressed or changing your outfit that they "forgot" to change when you went to bed in your clothes because you fell asleep in your chair.


NEGLECT masquerading as a resident saying "NO" to an offering and not attempting again to make the offer or adapt the offer to something the resident used to like our could be a part of.


NEGLECT in moving so slowly or in attempting to feed someone who doesn't appreciate the way you turn to talk to someone else and jab at their mouth and shove the food inside and then another and another until the resident says "NO MORE" and so you claim the resident "isn't hungry" or "is refusing to eat".


NEGLECT in ignoring the resident's wish to dine downstairs because you don't have the time or don't want to be bothered with having to roll them down a short hall to the elevator or perhaps "escort" them all the way to their seat.


NEGLECT causes despondency and can lead to delusions and hallucinations as a way of "coping" with an existence that is demeaning, demoralizing and inhumane.


NEGLECT pushes aside Hope for a better tomorrow because tomorrow is just another day of being neglected in one or more ways.

Neglect, Retalliation: Still Practiced Years Later

OPENING STATEMENT:  We've been there; we've gone to almost every level possible in our State with complaints including the DHSS, Ombudsman, Elder Abuse Hotline. All that results is a "show of interest" without any visible actions ensuring continuing adjustment and correction that's lasting.


As for an interest in the problems or people . . . it's an interest only in showing a response has been made and attempt to recognize the problem(s) without continuing follow through and the most important result:  publically published reports in plain language on one website with dates, names and locations of facilities and violations itemized in a format that's easy to read, easy to access and easy to compare and for more than one month or year "at a glance".


Yesterday my daughter and I visited Mom's old facility to be with a woman who's much younger than most of the population and has been in a SNC for quite a few years.


She needs someone to talk with; someone to confide in outside of the facility. It's obvious she can speak for herself but she also suffers from being "targeted" when she does; reduction of privileges and being treated with less "positive rewards" if she does. Our friend has no family in the area and the closest relative lives almost a thousand miles away.


Mary (not her real name) was telling us how no one came to help her out of bed; she wears braces on her legs and needs assistance getting out of bed and into her wheelchair. No one helped her to get clothes and get dressed. She waited an hour and a half for someone to come to her room and help her get to the toilet. When she was taken to the toilet, she was left "sitting" for so long she felt her legs going to sleep and tried to get up by herself, resulting in falling.


QUESTION:  "Mary" fell. Report was probably generated. Who do you think was claimed to be responsible? "Mary" of course. Who was really responsible?  An overworked Aide who cannot be in two places at the same time and who will most probably, like so many others, either burn out or go somewhere else where they think it's better and then find out it's the same.


"Mary" was walking when we first met her but when we started to work with her to leave the facility under Missouri's program of "Money Follows The Person" to move to a higher level (independent living), "Mary's" life became altered. She was "removed" from her volunteer job in the small "store" on property. Activities seemed to be reduced for her. The attention she received and the assistance became slower and slower in being provided; some might have been due to lack of staff but from the Nursing staff, most probably this was due to "the word" of her possible departure became known.


"Mary" had many problems with getting special shoes and braces replaced when they broke and spent months in a wheelchair waiting, waiting and waiting and then receiving "incorrectly sized" shoes that had to be "redone" resulting in more "confinement" to the wheelchair and more dependency on "facility assistance. Of course, the Independent Living place she was trying to move to required she not be in a wheelchair so the longer she "stayed" in the chair, the more possibility she would remain -- as she is today -- and this was approx. a year ago.


This inactivity led to atrophy of muscles necessitating, of course, on site Rehab, at more cost to Medicare/Medicaid, to try to help her "rebuild" what never should have deteriorated or been affected. More income for the facility; more challenges for the resident. Our tax dollars being used to provide services that were "necessitated" by what, exactly? The resident's "need" or the resident's need due to negligence or even to abuse?


BUT HOW DO YOU "PROVE" THIS AMOUNT OF NEGLECT AND RETALIATION?
The facility is celebrating its 125th anniversary this year. They've been in the business of providing "elder healthcare" at all levels for most of those years. They know the State inside and out and the legislation. They know how to "walk the line" and "bend the system" and "cover their tracks". Most of all, they know the State's bark is worse than its bite and in reality they will issue a reprimand in a written report which allows the facility to "correct" the situation. The facility will appear to change, for a couple of months, and then it's back to the same behaviors, systems and procedures.


We will continue to publish these insights.
We will continue to challenge families and those on the path to the day when they may have to "survive" Long Term Care facilities.
We will continue to seek and find information that enlightens and works to bring about change.

If not ME then WHO. I will carry the torch for our aging as I join the ranks.

Appalling Minimal Standards SNC/LTC Facilites for CNA's

Aides do the grunt work, the dirty work, the work "Nurses" generally believe are beneath their professional level -- both LPN's and RN's.

Over the years Mom was in a Long Term Care Facility, I've watched the services provided by CNA's, Certified Nursing Assistants/Aides, and never been able to locate details of their qualifications -- until today.

The Internet is an amazing wealth of information but sometimes you have to pose your question in exactly the right way OR stumble on the specific information while seeking other general info.

Today, I was researching general regulations and rules like how many personnel there should be on a floor attending residents at any given time. Imagine each State differs and as always, I access info on Missouri, you can seek info on your area and compare from some sites I mention in this blog that provide lists of various states or query Google or other search engines for similar information.

Let's talk about the requirements for the Aides in Missouri; these people who basically are the servers and observers of the men and women who reside in the SNC's. After all, they attend to all their personal needs including dressing, toileting, bathing, feeding (when needed) or delivering food trays to rooms and so many other functions.

My heart sank when I saw the minimal requirements in Missouri:  75 classroom hours and 100 hours "on the job" training. Theoretically, a person could attend two weeks of a "classroom/school" and be capable of going into a facility for "on the job" training" that would take another approximate 2 1/2 weeks to complete.

In Missouri, that means someone could be responsible and working solo with men and women in varying stages of physical and emotional needs including various forms of Dementia and using lifts and other mechanisms to move and turn patients that could potentially cause physical discomfort or even harm.

Read it for yourself at this link for Missouri: http://www.sos.mo.gov/adrules/csr/current/19csr/19c30-84.pdf

This link goes on to specify: "a minimum of seventy five (75) classroom hours of training on basic nursing skills, fire safety and disaster training, resident safety, rights, social and psychological problems of residents and the  methods of handling and caring for mentally confused residents such as those with Alzheimer's disease and related disorders .... followed by"100 hours of supervised on-the-job (clinical practice)" training

175 hours and an examination that isn't even standardized but each "testing" allowed to be done without any State certification of capability of the individual's actual abilities.

Mom was a hairdresser and she had to go through months of training, classes in physiology and chemistry and then had to go before the State to have a State Board examination. Not sure if that is true today but understand the course and time involved is quite a bit more than for the Aides who are daily providing life affecting services and observations for the Elderly -- at least in Missouri.

There's a whole list of Missouri schools that qualify to provide these courses and I randomly chose one:  http://www.medskc.com/programs.html

They offer many different class times/days of the week; one scheduled to begin April 18 and runs until July 18 is held each Friday from 8 - 3:30.

So, with a regular work week, "Marcie" (fictitious name) could be a CNA and responsible for the lives of elderly men and women through providing services, if she goes through the program and passes a test often administered by a facility who has the ability to create their own tests, by August of this year.

Wow! What other profession dealing with managing human life do you know about that is so minimal in its requirements for education and training?

Aides are the first line of knowledge of the individual resident in a facility yet they are given limited instruction and are constantly "on the run" to provide services generally requiring time and skills far beyond what they're allowed or trained to accommodate.

Returning to the Missouri site linked above:  "Curriculum content of the program shall include procedures and instructions on basic nursing skills in the following areas: basic hygiene techniques; bed making; personal care of residents; food service, charting; safety measures (including fire/safety and disaster preparedness, and infection control); basic preventative and restorative care and procedures; basic observation procedures, such as weighing and measuring; communication skills; methods of handling and caring for mentally confused residents; residents' rights' ethical and legal responsibilities; death and dying; and mental health and social needs."

BUT WAIT, THERE'S MORE:  "The orientation module shall include, as a minimum, the following topics: handwashing, gloving and infection control; emergency procedures and Heimlich Maneuver; residents' rights; abuse and neglect reporting; safety (fire and accident); lifting;' moving and ambulation; answering signal lights; bedpan, urinal, commode and toilet; preparing residents for and serving meals; feeding the helpless; bathing; dressing and grooming; mouth care; bed making (occupied and unoccupied); promoting resident's independence; communication and interpersonal skills." These are the directives listed on the State of Missouri cite referenced above.

SO WHAT ARE THE REQUIREMENTS FOR THE PERSON TAKING THESE COURSES AND BECOMING AN AIDE? Students must be at least 18 years of age or older, must pass Background Checks, must have a negative TB Test or Chest X-Ray, and score 75% on the Basic Education Test given the 1st day of classes -- is the statement on the Education Facility Site cited above and also detailed by the State of Missouri, which I believe uses the terminology must be able to work at an 8th grade level or above.

I remember watching many "new" hires at Mom's nursing facility where she passed and wondering how much training they had because each one seemed to be less prepared than the last one providing one on one daily care for Mom and others without anyone "supervising" or "tagging along" to train or oversee.

Think about it:  Your loved one is advancing with Dementia. New hires are arriving who are "in training" with your facility or who come from a "service" -- and family and friends and possibly you believe your loved one is "safe" and in highly "trained" and "caring" hands.

I challenge everyone to think again.

One Size or One Description Does Not Apply To All Dementia or All People

Going through some old papers. Since husband died in 2011 it's been sporadic cleaning, giving away and putting away for another time. This is one of them. Also going through bits and pieces of life so important at the time realizing I must have a more discriminating eye and let go of more. After all, who wants half the stuff I found so memorable and necessary? And I can't take it with me.


As with so much in life, organization is not my foundation of saving everything. I tried over the years but something more important always interrupted. Even now, I find I've put things with great meaning down on a desk top, placed lovingly in a box and then managed to combine it with other things for a more "thorough" going through that gets shelved along with the mementos.


Came across an envelope I remember Mom handing to me some days or even a week or more after my birthday before last. Inside were four broaches, two with missing "stones", all dating from varying time periods.


Costume jewelry, not that old and certainly not of any value other than sentimental. She still had them with her although we'd slowly exchanged her "old" jewelry for pieces we picked up at various discount places because she kept breaking pieces apart, especially necklaces that wouldn't go over her head. She couldn't fasten clasps and hadn't been able to wear her pierced earrings for many months; no one in her Long Term Care facility cared enough to help her with them.


Each piece came "wrapped" in one of the paper hand towels dispensed in a container in her bathroom she used after she washed her hands. It was all she had. And she wouldn't ask us for wrapping paper because she would then, as she always did, want to surprise us, want to do something "special" and want to "do it" herself.


I cried thinking of how she was still able to print/write even though we'd finally learned just months before she had possible or probable Lewy Body Dementia. Even that short a time ago, the diagnosis wasn't certain and it took Mom's final months exhibiting constant forms of the disease's effects to showcase the disease as what it is -- debilitating and providing a constant battlefront for the person who suffers from this roller coaster disease.


Mom's Dementia did not put her into a "comatose" state until the very end; one where she simply sat or laid somewhere with no ability to converse. Mom's abilities varied widely and they came and went but she was high functioning almost to the end of life.


Because Mom was able to fight and win some struggles while incapable of stopping the continuing advancement and inevitable end, people she would meet in 2012 thought she was "so good" "for her age".


Looking at the envelope, comparing it to other years, such a change. Mom said her "problems" were sight but seeing how she wrote words that were somewhat aligned and had space and dimension, you have to look further. She used to use cursive, on this envelope she mostly prints. She's recycled an envelope we'd given her with a card for her birthday which was a couple of weeks after my actual birthdate. Can't remember exactly when she gave it to me; that time was so crushed together.


She'd used the back of the envelope to try out pens, you can see many up and down marks from different pens, black and blue ink.  She wrote on both sides and probably forgot she'd written on the front and then wrote on the back. The words are almost the same so at this time she was able to hold some thoughts, still, in her mind. "Happy xxth Birthday Late .......With Love, Mom" on the front and "Happy  xx Birthday Xxxxxxx Love, Mom" on the back. Similar but slightly different.  She mentions my name on the back, not the front; she uses the format of a number followed by "th" on the front but not on the back and gets my age correct; she calls me by name on the back but not on the front."


Mom had lost all ability to read by this time. Her eye Dr said she had "perfect" vision after her laser surgery and at a recent appointment to check the eye that was done. But Mom could not focus, could not "read" and that's common in Lewy Body Dementia and others as it's the brain's ability to interpret what the eye sees.  Yet her writing, while certainly not "linear" has some format.  And, you can see she wrote under the seal of the envelope the word "HAPPY" because she sealed the envelope to keep the items inside the bulging envelope.


Mom's Lewy Body Dementia did not showcase itself in many ways we're taught Dementia and Lewy Body Dementia "exhibits".  Mom's social skills, her intelligence and probably her lifelong ability to struggle through and overcome so much were all a part of her disease and its effects. From reading other websites including http://www.thieflewybodydementia.com/ , people affected with the disease often function until the very end at higher levels of ability both physical and mental.


LBD mimics Parkinsons and other brain illnesses in affecting some processes and functions while others remain until they're reduced or eliminated. We look forward to the day when Scientists compare the very young and those with Dementia, especially Lewy Body Dementia and contrast the abilities and capabilities of the underdeveloped and undeveloped mind to the mind that has been attacked by the disease of Dementia.

My Cat Has Dementia -- Possibly Lewy Body???

I know. By the title of this entry, you must be thinking I'm seeing Lewy Body Dementia everywhere!

Well, maybe because we're more knowledgeable about Dementia and especially Lewy Body Dementia, my daughter and I see more clearly the symptoms and behaviours around us reflected in people we've visited many times at Mom's SNC/Long Term Care Facility and we've also noticed the same and similar behaviours in our very old cat.

Our cat's physical challenges and behaviours are very similar to Moms.

Balance & Gait -- she places her "feet" differently and often tilts or starts to fall to one side

Incontinence -- more bowel than urinary right now; she seems to go by smell and if she has an accident, we have to be very careful to clean it thoroughly or she goes back to the same area. Strange, however, if her litter box isn't cleaned frequently, she'll walk out of it and look for another place -- which is totally different from the above behavior -- possibly a memory of how that area"should smell" still remains?

Loss of direction/location of familiar items and areas -- we've moved her bed closer to where her litter box is located but still in the kitchen and it's in the laundry room--we turn on another small light to give her more ability to see;--we've had to close the door to one room because when she comes downstairs she turns into that room thinking it's where her litter box is and all that's there is a carpeted room -- not pleasant for us.

Eating and Appetite -- she's hungry and persistent about being fed or she doesn't want to eat when I try to feed her; she eats a few bites, leaves the can or dish (we try both because sometimes she refuses one but eats from the other. 

She often "forgets" the food is in front of her especially if she becomes distracted by my opening the refrigerator or pantry. 

Lately, I've taken her can and bowl and moved it beside where I'm sitting and she'll eat a little more when I do that although her attention span is still limited.

Sleep -- she gets up frequently in the night and thinks it's time to eat or if she does choose to sleep, she tries to lay her body across my face -- I thought it was to get my attention but now think perhaps it's to feel my breathing and know I'm there or cause me to wake up and feed her

Need for Companionship; cats are usually very independent -- know going up and down the steps is becoming more of a chore for her but she seeks us out as though needing companionship more than ever

Grooming --  is sometimes done and sometimes not -- any cat "parent" will tell you cats are constant groomers and so was ours; now, grooming isn't as
detailed and seeing the "tangle" of hair on parts of her body, not as thorough as she used to do

Appetite -- she acts hungry and begs for food and then takes a few bites and walks away -- only to return to my side to beg crying out for something to eat

Span of attention -- getting shorter and shorter -- she sleeps a lot; she eats small amounts; she turns away from her food and then can't find it again and when I take her back has to be coaxed, sometimes using a small spoon filling it with a little food and placing it against her mouth so she realizes it's there

OK, this may seem like a "stretch", but if we believe, as has been written in several articles about comparing the "years" of a dog and a cat's lives to a human life, a cat that's over 20 (we're not sure how old she was because we choose our cat from a cat rescue organization) she must be around 100 human years old. So, why couldn't she have Dementia/LBD?  Let's explore the internet and see if my "crazy idea" has any merit; as usual, LOVE the internet!

Here's a resource I just checked; read for yourself; it's quite interesting -- http://www.calculatorcat.com/cats/cat-years.phtml and here's another resource: http://www.petmd.com/cat/conditions/neurological ct cognitive_dysfunction_syndrome

So, the world is filled with "cognitive challenges" and Dementia.

Why, then, do we know so little about how to work with, care about and recognize Lewy Body Dementia and other Dementias?

Why do we ISOLATE Alzheimer's patients and set them apart in some Long Term Care facilities and yet let others live openly in the facilities when they have similar "challenges" but a Dr or other person has not decided to "declare" the person to have this "challenge"?

In the United States, we're bragging about, advertising and seeking higher rates of compensation for caring for "select" individuals when it's obvious there is a much higher rate within the aging population of individuals deserving better care, more focused care and more individualized care.

You and we will make the difference if we pass the word along and become active in our communities, with all organizations and through our legislators to turn this NATURAL life event that comes our way if we live long enough.

Many of us will exhaust our funds set aside for "Elder Care" or the costs will become far beyond the policies we've paid or they'll be "adjusted" (I'm sure there's fine print in those contracts; no company can begin to predict the costs of goods and services over more than 20 or 30 years)

Continue this journey with us to make a difference in the everyday life and care of a part of our population who lived to make a difference in the world and provide what we eat, drink and use and who nurtured us and cared for us.

Live long and prosper -- in the words of Star Treks' Vulcan, Mr Spock. Ray Bradbury was a science fiction writer but also a futurist!