Saturday, April 26, 2014

Farewell, Dear Friend: Our Circle of Life Third Member Passes

In Human compared to Cat years, she was as old or even older than Mom when our beloved companion and pet of twenty years passed two days ago.

I'd written how she appeared to have Dementia similar to Mom's -- the cat's gait, balance, incontinence, confusion, changes in eating habits and more -- and finding references to articles about Dementia in animals. It stands to reason. They have brains, we have brains; they get many of the same diseases we do.

Our domesticated companions are an intricate part of our lives bringing the same joys and challenges as members of our families.

As with Mom, we could see the end nearing but a part of us kept hoping it would be a little farther down the calendar than it actually was. We felt comforted that it came this past week and not the next. My daughter and I were both starting new jobs and while I worked every weekday, her work gave her two days off during the week. Fortunately, one was the day our dear companion, our cat, passed from this life.

The night before I could not leave our very weak and so very slight little friend downstairs and just knew she would not be able to make it up the steps, as she did for so many years, to be with us.

Daughter said cats usually seek someplace to hide when it's "their time" but I felt this wonderful life's companion who so often came to lay beside us, climb onto my lap, would not want to "hide" or "be alone". She was as close to us as we were to one another.

Her moving around the downstairs or coming up the flight of stairs became more difficult this last week.  The day/night before, she went to the steps but then returned to her box. I think it was two nights she'd spent totally downstairs and waited for us to come to wake her up when she would usually climb the steps (often as early as 3:30 AM) to let us know it was time for us to open a can and feed her. Dry food was for dry times, she seemed to say, when you aren't around and I have nothing else.

I'd noticed she could no longer jump onto my lap in the last week. She'd come in and "cat-wail' letting me know she wanted to lay on my lap as I sat in a favorite chair with an ottoman. I'd tell her to move closer so I could lift her .... and she would. Placing her gently on my out stretched legs, she'd struggle to get her body to move to a reclining position. I'd gently help her move limbs showing less flexibility and even some arthritic misalignment in hips and joints. Sometimes she'd fall asleep and I'd cradle her with my arm where she'd lay her head and stretch out her paw, always moving it back and forth caressing my arm to let me know how pleased she was to be so close and yet have such freedom and ability to move or even to leave, if she chose.

We took her upstairs the night before she passed in the box she'd claimed a few months before. Just an ordinary cardboard box, a three sided box that wasn't very deep but she could lay in it with a cushioning of an old towel.

She'd found it on the kitchen floor one day; a box without it's top sections I was going to discard but when our dear friend selected this box, we found some old towels and made it her "special place". It sat in our kitchen and often she'd move from another towel on the floor, where she liked to stretch out in the sunlight, to the cozy, secure and comfortable box.

During the really cold, subzero Winter weather we'd experienced this past year, we would microwave a small rice filled pillow, place it between layers of a hand towel and against the side of the box to give her additional warmth.

The box became her "special place"; we moved it into the sunlight or the shade, depending on the weather and her "preferences". The box gave her room to change positions but supported her as she advanced in her journey these last several months. 

And so this was our choice for her burial, this box of comfort, love and family.

The night before she passed, we took her upstairs in the box wanting her to be near us and us to be nearer her. We saw the signs, those we'd witnessed in other family members in these last three years of life changing events. But as with husband and mother, we did not know the time or place, only that this unwelcome guest named Death was coming closer and would soon arrive.

Our loving cat managed to climb out of the box during the night. She dropped herself down onto the carpeting and appeared to try to sleep. I slept on and off. Whenever she moved she'd make a pitiful crying sound. She had problems with her sight the last couple of years but her hearing would help her to "find us" and know when we left or came home or even if we'd opened a can of food for her.

Now, she seemed to be turning her head, looking for me and wanting to be near. I picked her up and put her beside me in bed, cradling her with covers and placing my arm near her; she'd taken to laying beside me in the last several months and even as her strength was deteriorating in the last week, managed to use the "cat stairs" we'd found at a garage sale and make her way up to sleep on the bed.

Purring, so natural for her and so frequent, had become as much of a challenge as her trying to groom herself in the last couple of weeks. I heard a soft sound so familiar and so welcome as she turned her head toward me laying curled up beside me. A thank you for caring for me type of sound. And, that familiar movement of her paw up and down.

We both slept but my sleep was shallow and I grew more and more concerned about her inabilities now to move and disinterest in food I'd tried to offer to her earlier in a small spoon. She'd kept drinking even when she didn't eat but now she was incapable of moving for any basic self sustaining need.

When the morning came and I had to leave for my new job, I cried and pet her; telling her how much she'd meant to me, to our family. I hated to leave my daughter to go through what I felt would be another last day on this earth for another family member.

Yes, this was an animal, but this was a third link in our family unit; a long part of our family history, our daughter's pet, chosen by her but loved by all. I felt I had to say my goodbyes to her; her weakness and inability to move, her difficulty just lifting her head. I knew her life was leaving her little body, now so slight and so light we could barely feel any weight when we moved her from the bed to the box for her final journey.

We had so many memories. My wonderful husband always told me he didn't like Cats. Never had one. Always had a dog. Didn't trust them. So, of course, he was the one our new addition always sought out to rub against, jump on his lap when he sat down, greeted when he walked through the door.

It didn't take long for man and cat to bond. And when he was sick, laying in his hospital bed in our downstairs family room, our loving cat would lay on the floor beside his bed knowing she should not jump up on him because of the four open wounds draining on his abdominal area. Or, she would jump into a chair nearby, always keeping watch. Always there. Waiting. Hoping, as we did, for the day when Dad would get up, go out and come back, get something to eat from the refrigerator they could share......

And as for my Mom and the cat. Well, that was another family story. Mom and I had cats over the years. They were often strays that "found us". We both couldn't turn them away. Or from the humane society (our wonderful cat was from a Cat Rescue). We'd had kittens and we'd had wandering males in our years of being cat people. So, this addition to our family after a year without our wonderful but much more dependent cocker spaniel, was most welcome by her.

Mom talked to Cat, fed her and sometimes scolded her for walking on a counter. Our cat was very capable of jumping and showed her accomplishment at most inappropriate times like when Mom was trying to roll out a pie crust and our dear friend's curiosity just had to be satisfied.

Mom missed our cat. She welcomed occasional visits to the cat who lived at her second Long Term Care facility and a dog that "owned" all territory outside of the cat's domain which was the main Activity Center. Mom shared her love of life and animals with me and I have tried to pass that on to my children.

Daughter and I both went through the last two days much as we did with her father, my husband and my Mom, her Grandmother. Death and mourning are  complicated by expectations: planning, gathering, sharing and moving forward.

With this third family member's death, we both have wept and shared the tremendous grief we've kept, for the most part, inside and weighing down almost everything.

We've moved forward with each passing -- sometimes reluctantly and sometimes forced to do so by circumstances. We've spent time before the previous deaths and all this time after almost always being stoic and shouldering whatever came our way. This is just another step in our life journey. Time to move forward .... again.

Death is an unwelcome guest. One we do not want to prepare for but must. One we are uncomfortable hearing about and having visit. We look forward to Death's immediate presence leaving and the memories of its visit fading. We do not welcome its return, yet know Death will come again. We value life welcoming and celebrating its presence.

Daughter was given the day to participate in her pet's death as she'd been given the gift of being there to care for her Dad and Grandma. She read from the Bible at her father's funeral and sang a beautiful old hymn at her Grandmother's.

For her special companion, she tended to the basic needs, placing her cat lovingly in her box with a clean towel, gathering brightly blooming flowers our dear cat would have welcomed going up to outside and smelling (and did over the years) and placing them lovingly around the inside of the box.

Using a beautiful cutwork table runner and oversize placemat my daughter had found at a garage sale recently, she placed the box with our dear friend inside on top of a step stool and covered it. She took a small bowl, one given to me years before, and placed dried roses from Dad's and Grandma's funerals in it setting it in front of the covered box. Symbolically, they were together.

Of course it rained, heavily, that evening when I came home, so we could not go to bury our beloved friend. So, like the other family members who preceded her, we had a wake, a time of mourning, so to speak, yet another family member passing. It was perhaps one of the greatest gifts we received; the gift of time to mourn, of time to rejoice and of time to reflect.

The next day, the sun shone, the flowering trees were magnificent in their glory. We said goodbye to our friend, our constant companion for so many years....For everything, there is a season .... and a reason.

We Rejoice and Remember: Families come in all sizes and shapes.  They have joy and sorrow. They live with the memories of yesterday, the joys and the challenges, and, the Hope of another day, of Tomorrow. 

Rest in Peace dear friend and companion.
      You will be missed and remembered.

Monday, April 21, 2014

Communication: Word Choice, Tone of Voice, Personal Attitude

Seniors with Dementia deserve better communication. Here are some of the words/phrases we overheard at Mom's SNC/LTC facility, within Hospitals and Medical Care facilities including Dr's offices and Rehab facilities.

Patronizing, accusatory and negating approaches resulting in Seniors various reactions from frustration to anger and everywhere in between:

"Come on now, honey, you can do it, just try a little harder."

"Now, Mary (made up name), we both know you know how to do this. You've just got to put your mind to it."
"I don't get it, "Mary", you were able to do this earlier today/yesterday and now you don't want to even try?"
"There. That's right. I knew you could do it if you just tried a little harder."
"All right, "Mary", you said "No" and I have other work to do with other people."

Language and choice of words that can be personally demoralizing or demeaning take away a person's feeling of dignity and when applied by one constant caregiver or several deteriorates the Senior's well being both mentally and physically.

One of the many personally demeaning comments I heard directed towards my mother: "Oh, (name), you made so much Poo; so much; so much Poo.  Such a mess. Such a mess.  Now I have to clean you up and you know that hurts when I do.  So much Poo."

My heart broke so many times when I saw or heard actions and words taking my Mom, my wonderful, highly capable Mom, that had once again failed to please, failed to do something or did something that caused more work, more care, more time.

What was missing?  COMPASSION. And also concern for the other person; belief that there was still, no matter how "conscious" or "unconscious" a person was, some part of their "being" was still hearing/seeing/feeling. DIGNITY.

Child psychologists tell us HOW we talk to a child and WHAT WE SAY can have more of an affect on their development and ability to have self esteem and grow positively.

WHY AREN'T WE UNDERSTANDING HOW IMPORTANT WHAT WE SAY AND HOW WE SAY IT IS TO ADULTS who may have cognitive or capacity issues/challenges but who are still, like an infant or young child, listening and learning about the people who "care" for them and forming opinions of their "self" and "abilities" as much as they are about how they will respond to others.

As has been written many times in this blog, Lewy Body Dementia DOES NOT totally disable, totally impair or destroy capacity or cognition and can provide a level of these abilities capable of being affected far into the disease and the "Late Stage" as well as the Beginning and Middle Stages.

SPEAK UP, PLEASE.  Let your voices be heard. We want your comments. We need your feedback. We all benefit from observations and comments from relatives and friends in this blog and others and in ways that will change our society's way of communicating and serving our older population, especially those who visit medical facilities including staying in Rehabs, have Respite or live "permanently" in Long Term Care Facilities.

QUESTION:  How were you taught to walk, feed yourself, hold a pencil or do any other skills involving using both your mind and a part or parts of your body? That's a basic learning stage. How many books, articles on line and other resources did you use including attending seminars and school meetings to "learn" how to work with your child, to develop their "full potential" whatever their mental or physical abilities or challenges?

NOW, ASK YOURSELF:  How many meetings directed towards developing/maintaining the potential of our elderly are in our Communities, Long Term Care Residences and other places?

QUESTION:  Why aren't all members of Long Term Care Facilities and Rehab Facilities required to take special courses in Communicating With Mentally Challenged Individuals AND required to complete specific levels of training on Dementia of all types along with Certification in various levels of care?

Topic for another time:  Lack of Accreditation for Senior Caregivers in Dementia and related diseases recognition, management and communication within the Elder Care Community.

Why isn't there more of a movement in the Senior Care/Caregiving area to use skillsets developed in Early Childhood Education and working with people with limited abilities (aka "disabilities", a word I find inappropriate at the least) using similar techniques and tactics to promote retention and building of skillsets?

DEMENTIA IS A DISABILITY and we should recognize it as being one. 


I like the word and terminology "limitation" applied to people of all ages who experience challenges physically and mentally in daily activities.

Please: Speak Up; Speak Out; Write: Video; Take Pictures: Make Dementia Known & Respected

Sunday, April 20, 2014

Constructing Change: Teepa Snow, Whoopi Goldberg, Kelsey Grammer

Reading this blog you might think we're negative and only see what's wrong with Dementia care and especially in Long Term Care Facilities.

The reality of life is you generally talk about and live within the parameters of what you experience or learn about. Our experiences are definitely more on the "dark side" of Elder Care and especially Dementia care but within the darkness has been ENGLIGHTENMENT and that is what we also share in this blog.

We realized we were not alone in our experiences. Advocating, becoming involved and networking we heard stories similar to our own about Undue Influence, Abuse, Neglect and poor Senior Caregiving.

Generally, people who have these experiences are often consumed and confused just trying to survive another day dealing with dementia.

We've decided to raise our voices and provide actual personal experience with Dementia (especially Lewy Body Dementia) to build awareness and provide opportunity for advocacy and change.

There are a few people who are on the "cutting edge" of trying to change how Seniors with Dementia are seen, cared for and provided for. Teepa Snow is one of those rare individuals whose voice is growing stronger, louder and certainly more visible with her new website  and parts of her videos which you can see at

We found one of her videos when searching You Tube sometime after Mom was initially diagnosed with possible/probable Lewy Body Dementia in the mid or late stages.

At that time, there was very little on Lewy Body Dementia available on the web; this was Spring 2012 and it seems like an eternity has passed instead of just two years with the NEW and visionary entries on LBD on many sites.

Teepa's approach to caregiving for Dementia patients focuses on her work with patients directly as an Occupational Therapist. This branch of Therapy, in our opinion, is the one least used in facilities mainly because there is very little financial support through Medicare and Medicaid for the general population.

In Mom's facility, almost all Physical Therapy was provided in a special area or room with varying types of equipment. Occupational Therapy tends to use everyday items to rebuild skillsets and can often be done outside of a specific location including the resident's room or the patient's home.

In facilities and leaving hospitals for Rehab, the coverage by many private insurances and definitely through Medicare/Medicaid, is geared towards physical therapy with occupational therapy seen as aiding stroke victims and sometimes to regain basic skillsets like eating, dressing and other personal care areas.

Therapy is an additional financial expenditure. Teepa goes beyond this concept and broaden's the approach of caregiving to every person, especially those providing the daily services (Aides, primarily but also Nurses and Doctors) to specific ways and means to touch, talk and see what is visible and what is hidden in providing care ensuring the safety and well being of individuals with Dementia. We need more advocates like Teepa Snow within the industry of Senior Care!

The reality in many facilities is the Activity Department is the one that is given the responsibility of developing "social interaction" and various other areas. The challenge becomes anyone can go to Activities but you have to have "orders" for Occupational Therapy from a Doctor and that is reviewed for type and extent by the insurance companies both private, State and Federal.

What Teepa teaches are ways to live, work and play with individuals in various stages of Dementia. She also specifically addresses Lewy Body Dementia, how it differs and specific ways to cope with this roller coaster Dementia.  and

IMPORTANT NOTE: Teepa provides programs to various organizations and groups, some of her more informative presentations are located on sources not accessible through just searching You Tube with Teepa's name. Suggest as we have done you use her name and also a subject area like: Lewy Body Dementia.

You'll bring up various videos including one by Whoopi Goldberg who's become a spokesperson for the Lewy Body Dementia Association. Here's the connection to Whoopi's PSA:  and to one from Kelsey Grammer

Listen, Learn and Spread The Word -- today, resolve to send three people this blog entry  or blogsite and tell them it's important to their health and the health of family members and friends to BECOME AWARE OF LBD AND SENIOR CARE CHALLENGES AND POSSIBILITIES.

Saturday, April 19, 2014

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.


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.


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.

Friday, April 18, 2014

Comparing, Contrasting & Always Remaining Open To Discussion

Most people will agree, expecting a baby is often exhilarating.

When we face challenges with the baby who doesn't want to nurse as we're told they'll naturally latch on, do we deprive the baby of what it needs? Do we conclude the baby doesn't want to live?

NO. In the twenty first century we move heaven and earth to find out what, why, when, where and most of all how WE can work through this challenge.

Seeking medical counsel or counsel from books and You Tube to try to find out what else we can do, how else we can "present" or "offer" or encourage or what else might be affecting this valuable asset to society, this child we've brought into the world, we do not stop until we find a way to work with and for this human being.

That's a key phrase in today's world"  "Asset to Society". A scary phrase, in my opinion. For who defines "value" of a human being of any age or any capacity?

FAST FORWARD.  This baby has survived life and its many challenges, has matured and moved into many decades later and is now faced with the challenge of Dementia. 

Now this disease or medical challenge is taking over the person's thoughts and even the body's daily actions and activities. 

Now society focuses not on growth and gain but on loss of ability and deterioration and most act in ways that emphasize these activities rather than work to minimize or stabilize these actions.

The patience and perseverance with which we faced the challenges of working with new life disappears and the frustration can build.

As a baby and far into adulthood, the focus was on "training" the brain, "expanding abilities" with growth and development. 

Somewhere along the journey of life individuals and society have taken on the belief that this slows down and even stops.

On TV yesterday I saw someone talking about how the age of 24 was the end of abilities to effectively and efficiently grasp, retain and learn at a pace to keep up in our "modern world". Maybe 25 is the new/old 40 that once was seen as "Over The Hill" and downhill all the way?

OR .... maybe we need to rethink our values as a society and our practices that seem to be determining what we say and do and how we act towards one another contains respect and dignity. We write that we do this but few actually practice these values.

A GUARANTEE.  If you shelve people, like books they will collect dust and show their age more than if you open them often, share them with others and find their contents as relevant today as they were yesterday when you "purchased" them -- when they were born into your life.

BRAIN DRAIN.  What have we learned from RETIREMENT?  

We've learned people who stop actively participating in life become bored, begin to lose certain functions and abilities and can become despondent. 

AARP, OASIS and other organizations along with some communities and family members encourage active involvement, provide programs and activities at varying levels of ability offering variety and interest and self satisfaction. (I decided against a link to AARP because the site has too many pop ups and ads).

Here's the link to Oasis (which, by the way, like AARP now starts for people aged 50 and above): 

Inside the walls of many facilities for Long Term Care, however, we revert to amusing, cajoling, entertaining and other very mindless activities and call that "individualized caregiving".


Come along with me sometime to visit Mom's old SNC/LTC facility or drop into one and really look around, listen and learn. 

Mom stayed in her room; sat in one place; busied herself with what she had or found to do; and, waited . . . to be told what to do, when to do it and how to do it. No one really cared. Mom had to initiate and show an interest, we were advised. Or, she was taken to what she considered "mindless" and "childlike" activities that held no interest and she was bored.

NO COMPUTER ACCESS.  The only computer in any type of accessible area was "off limits" and no resident was given permission to use it at any time. It sat waiting for an employee of the facility who had been given the ability to use it yet it sat in a room that was available to residents for "special occassions" by reservation.

I looked long and hard for a facility that Mom qualified for -- we had to have her in Medicaid because she had no resources, no ability to pay, at that time, $5,000 to $8,000 a month for a shared room/bathroom.

Those marketing pieces and glossy pictures and videos don't portray the reality of almost every "average" SNC/LTC facility. Under staffed, run by people who focus on the bottom line (even the Not For Profits) and constantly besieged by more and more paperwork and less and less time to devote to services -- they are as "shelved" as the people they serve.

  • Clocks and watches used to have to be wound to be functional.
  • Auto settings on appliances didn't exist; you had to actively turn them on & off.
  • People repaired or had repaired shoes, clothing, tools, appliances and more, stimulating business and brains to remember, retain and function.
  • Families were units of generations caring about and for one another; often living together or nearby.
DEMENTIA may progress because we fail to actively use our brains as well as from medical causes.

What if we weren't a "throw away and consumer oriented society"?

What happens to parts of your body you exercise or use in specific ways if you don't continue that function? 

Shouldn't our brain be considered the most important "muscle" or "organ" or "part" of our body and in need of the same ongoing attention we give to our heart, kidneys, other organs, eyes, teeth and even our nails and hair?

Dementia may be visible as an accumulation of plaques or other materials but what about our bodies and what they can show when they're not taken care of?

Right now... take a moment and stop, think and consider. WHAT IF ....
  • We valued age as we value youth.
  • Experience and learning wasn't considered obsolete because it was gained at another time in another place.
  • We realized you can continue to learn, to grow and to become even when you're confined to a specific space or place if someone takes an interest in you and if someone cares enough to work with you.
Spread the word:
  • Dementia is a disease to acknowledge for more than the damage it does.
  • Dementia is measureable and it's also workable; it might even be preventable in total or to a significant degree.
There are people who pass through this life every day at very advanced ages and with many of their "capabilities" and "capacities" still intact. That might be a sign of someone who's struggled with, fought the war and won many of the battles even when, as with my Mom, life ends. And, it's also a sign that they and others had the foresight and insight to find ways to live and provide life to the fullest and be valued for who they are as much as for who they were.

ONE SUGGESTION:  Stop reminiscing with people about what they did, who they were & what they no longer have -- that can be negating here & now.

  •    A TODAY to value themselves and continue to grow and learn
  •    A TOMORROW to look forward to great possibilities
  •    A future YESTERDAY filled with more positive memories      

Thursday, April 17, 2014

Going Back To Mom's SNC; Seeing Others Being Neglected/Abused

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?

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.

Tuesday, April 15, 2014

Sick To My Stomach Reviewing Minimal Standards SNC/LTC Faciliites 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:

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:

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.

Saturday, April 12, 2014

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 , 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.

Friday, April 11, 2014

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 -- and here's another resource: 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!

Wednesday, April 9, 2014

Major Sources for Nursing Home/Long Term Care Rules, Regulations and Individualized Care

A helpful tool is your State's Department of Health and Senior Services published materials for information on the responsibilities of the Long Term Care Facility and the rights of residents, families and caregivers. Here's the site for MO:

A primary person at the facilities should be the Social Worker who is supposed to be the advocate for each individual patient. However, they're employed and paid by the facility or ownership.

Here's a revision of Missouri's Ombudsman (now VOYCE) "The Role of the Social Worker in the Long Term Care Facility" pamphlet originally written as a result of a conference of independent practitioners and academicians from 1985 - 1987, it's gone through three revisions with the latest from 2005-2006 and latest publication in 2008. We've found the Table of Contents on Page 2 most helpful:

Remember, this is a report, a guideline, it has no real legal authority and only the published laws, rules and regulations of the State, the County, the City and Federal Authorities with jurisdiction detail what the realities are regarding the specific obligations of Long Term Care Facilities.

One of our early misconceptions was documents like the above were actually enforceable. They are insights and possible procedures but not mandates. The actual State laws are very broad, rules and regulations are developed to "funnel" down some more specific mandates. Then there are Medicare and Medicaid requirements for receipt of funding.

Some sections of the referenced report from the ombudsman we've found most helpful: Pre Admission Screening, Resident's Rights, most important section: Individualized Service Delivery including areas entitled Care Planning, Minimum Data Sets, Assessments, Notes & Plan of Care. Again, however, go to the actual State Rules and Regulations and there may be several under different areas. One of the greatest assets we have as caregivers and those who are growing older is the internet and its vast abilities to seek and find and refer to other resources.

SUGGESTION:  Spend the small amount of time and money and get a copy of each individual assessment and caregiving plan. The insights you'll gain from the facilities observations and reports as well as what has been submitted to "higher authorities" that must be transmitted to the State and Medicare/Medicaid can be invaluable as time passes.

Be sure to ask what specific reports, evaluations or other State, Federal or other entity required documents the facility must complete, produce or provide and on what regular basis to ensure you have a "total picture". And, always do it in writing; you'll probably have to pay a per page price so you can always ask to review any and all documents and reports and request specific pages or a page. In hindsight, I would do this from day one of entry of a loved one.

SUGGESTION: If you value the quality of life of your loved one, maintain a close and highly observant role and keep a diary, record or notes; today's cell phones and computers make this much more possible to maintain, update and retain words, pictures and videos of your loved one as mentioned in the blog entry:  under Lesson #5.

 Having experienced several Long Term Care facilities for both Rehab Care and Long Term Care, we believe it is the Administrator of the facility and the ownership/top management who generally sets the "pace" for the involvement of all employees and independent contractors "employed" by the facility.

Depending on the "hierarchy" within the facility and the Staff Responsibility Relationship Chart (if there is one) as to whom the Social Worker reports to, is directly responsible to, there can be a wide variance in the actions of the Social Worker, the level of competence and the level of the person's ability and/or responsibility.

As mentioned in the previous BlogSpot entry above under Lesson #6, check not only to see if your Long Term Care facility has a Resident's Council, but that it also has a Family Council. 

KNOW BEFORE YOU GO:  Attend a Family Council Meeting and if they don't have one, ask how the families communicate with one another.

Before you choose to admit yourself or a loved one, attend both of these and at the Family Council, which is open to "everyone" in the community, you do not have to be a family member, ask to see any and all notes from meetings and/or ask to meet with a few of the people you've observed have made both positive and negative remarks about care and services within the facility.


Administration and even ownership changes; since this may be a place you entrust yourself to at a time when you may not be as capable, it's best to Plan Ahead.

Our Advice:  We plan for our education and profession; we plan for our community involvement and choices in what organizations we belong to but we don't consider planning for how, where and why we'll live some of the most important time in our life, the time of most personal care need and the time of least ability to provide it for ourselves -- eventually

And, even if your goal is to remain and to pass "at home", your life may not follow that path of pre-determination. Protect yourself with a level of "insurance" we all deserve -- DIRECT AND CONTINUING KNOWLEDGE.