Are Your Loved Ones Lab Rats And You Don’t Know It?

Knowing now what I know about Lewy Body Dementia, I’m concerned there could be individuals in Long Term Care Facilities that are being used for experimentation after finding the following website:  http://www.cms.gov/Regulations-and-Guidance/Guidance/Transmittals/downloads/R12SOM.pdf

It’s become more widely known the executive functioning, the decision making area, part of the brain is affected with LBD and other forms of Dementia.

Because they can pass the MINI MENSA and other “psychological” evaluations for a long time into their disease progression, THEY HAVE THE ABILITY TO GIVE CONSENT TO PROCEDURES AND TESTS that might cause them more harm, more pain and most importantly, more suffering. 

People with the first stages of Alzheimers and other Dementias also have limited abilities and one might argue distorted executive level abilities that should not be used for actions of this kind.

Every day we see the ads on TV citing the side effects of drugs, even those released on the market, that have provided serious health problems and life ending effects causing them to be pulled from distribution. 

Just because someone may be seen as closer to that "end of life" stage, should this allow our society to condone using Seniors in Long Term Care Facilities as "lab rats"?

Every day medical facilities, and Long Term Care Facilties are classified in this category, are involved in research and trials. It's evident in a cms.gov document quoted below.

WHAT’S GOING ON AT YOUR FACILITY? 

Is this another reason Mom’s facility, in our opinion, and others “assess” residents at a higher level than they actually are and fail to recognize congnitive degeneration – because the residents then can “make decisions” where the facility would benefit? Is a facility compensated for these "trials"?

Most importantly: Why haven't we, the general public, been told about these "trials" being done at Long Term Care Facilities?  Why aren't we provided with a list of facilities that are involved in these tests? And a history of what tests they've participated in. I, for one, want to know before I go!

TRANSPARENCY.     FULL DISCLOSURE.       SUNSHINE LAWS.

Please read the following excerpt from http://www.cms.gov/Regulations-and-Guidance/Guidance/Transmittals/downloads/R12SOM.pdf

Ask yourself:  Why would this section be a part of Federal documentation if there haven’t been problems, causes for concerns and previous violations?

F155

§483.10(b)(4) -- The resident has the right to refuse treatment, to refuse to

participate in experimental research....

Interpretive Guidelines §483.10(b)(4)

“Treatment” is defined as care provided for purposes of maintaining/restoring health,

improving functional level, or relieving symptoms.

“Experimental research” is defined as development and testing of clinical treatments,

such as an investigational drug or therapy, that involve treatment and/or control groups.

For example, a clinical trial of an investigational drug would be experimental research....

The resident has the right to refuse to participate in experimental research. A resident

being considered for participation in experimental research must be fully informed of the

nature of the experiment (e.g., medication, treatment) and understand the possible

consequences of participating. The opportunity to refuse to participate in experimental

research must occur prior to the start of the research. Aggregated resident statistics that

do not identify individual residents may be used for studies without obtaining residents’

permission.

Procedures §483.10(b)(4)

If the facility participates in any experimental research involving residents, does it have

an Institutional Review Board or other committee that reviews and approves research

protocols? In this regard, §483.75(c), Relationship to Other HHS Regulations applies

(i.e., the facility must adhere to 45 CFR Part 46, Protection of Human Subjects of

Research).

NOTE:  The statement above about being "fully informed". Seniors are generally in Long Term Care because the majority of them cannot provide their own daily life needs and one of these is medications. 

Yes, they can be self administered, if the facility finds the patient is "capable", but change a resident's medicine and see how many actually inquire about: dosages, side effects, expected results including cure or control and other effects.

Some people will undoubtedly see this as a "breakthrough" and a "way for those in the last part of life to contribute". In an altruistic world I'd agree. 

Unfortunately, Long Term Care facilities are few and far between that have the medical ability to monitor some experimental research programs.

At the very least, these programs should be fully disclosed to the general public as they involve individuals who are 24/7 influenced and managed by the people who could directly benefit from an experimental study and because there should be no "hidden" parts of Long Term Care that could influence an informed choice.

'Tis The Season: Family or Facility, Always Trade Offs, Often Incidents

We used to spend holidays with extended family at our home. We provided all the food, the drink and everyone came ready to enjoy and imbibe.

Back then, it was three days in a row “shared” with husband’s family because it was “traditional” to spend Christmas Eve, Christmas Day and a few days before to celebrate his youngest brother’s holiday birthday – all together, the same people.

I understand now and I understood then. My husband’s brother was born with Downs Syndrome and when he was younger, Christmas was a very big deal and so was his birthday. As he grew considerably older, though, and we had children and friends and other family, we would have liked to have had “our time” as well as “family time”.

We would have welcomed another day, perhaps before or maybe after by several days, Christmas day, but the added stress of getting everything ready, including the major holiday feast and all that entails, was not always a joyful sound within our family.

Looking backward, I did a great deal of accommodating, of living life as others wanted.

We arrived at Mom’s old facility to share the main meal, Lunch, on Christmas Day with two women in their mid sixties whose medical conditions and daily needs have placed them in these rooms and hallways long before what would normally be considered “their time”.

One of the women, newer to the facility, wasn’t waiting in the dining area or the lobby when we arrived, daughter and I. Told she’d returned to her room upset and deciding not to join the dining, I hoped maybe by going to visit her room I could bring her back down to main dining.

Sitting in her electric powered wheelchair, not able to move very much below her neck since breaking her back, she’d obviously been crying. I smiled and was hopeful she’d join us. She just said, no, she wasn’t interested in leaving her room. She finally shared why she couldn’t bear to go back down to a dining room where she didn’t feel welcome; didn’t feel included.

Tears streaming down her cheeks and barely able to wipe at them, she said she’d gone down, looked for us, didn’t find us and then saw all the tables were set up for “families” complete with the name of the resident followed by the word “family”.

She didn’t see and we didn’t see any tables set up as they usually are for”communal dining” of residents. Only “family” tables. Although we included her in our “family”, because we’d only gathered once before, since she didn’t see her name but saw the names of almost all other residents who normally ate in this Main Dining Room, she felt left out.

No table for any resident who didn’t have “family” dining with them. I noticed a couple of small, empty tables without “tent” name identifiers. They were located in closed in areas and not accessible for anyone in a wheelchair and especially not the type our “new friend” used – larger than most, more accommodating for her broken back and for her larger sized body.

My heart was heavy. A facility representative had come to her room, she said;they asked her what was wrong, but no one made any attempt to remedy the situation or apologize for the oversight.

They told her she could eat in the upstairs dining room – which is always relegated to those who did not have the mental or physical ability to get downstairs to the main dining room.

Mom used to hate having to eat upstairs whenever a medical challenge made it impossible for her to move herself down to the first floor dining area. It’s difficult for anyone who wants “companionship” as almost everyone is in their own world and almost all have no idea if anyone else is around them.

This was her first Christmas in the facility. She came mid Spring earlier in the year. Being of very capable mind but highly challenged body, she’s had to rely completely on assistance for almost everything: dressing, undressing, movement into bed and out to her motorized wheelchair, ensuring her wheelchair is charged, emptying her ever present collection bag and being cleaned up when she soils her paper pants.

This once, not that long ago, highly capable, very intelligent, working woman with significant responsibilities is now confined to a life of hoping and waiting. 

She’s still highly verbal but in a facility, that can make your life even more challenging for “contributing”, you choose to weigh your words carefully and become more silent rather than speaking out.

She knows she’s basically helpless and that’s a major fear for her. 

I remember with Mom during the early days how she talked about some of the staff being “out to get her” and I thought this was due to her changing mental capacity/capability.

Hearing it from more than Mom, seeing the fear on faces, we’ve varied from standing up to those who show their “annoyance” at the needs and emergencies that arise to confronting them and reporting them to the facility and to the Ombudsman and State Department of Health and Senior Services.

Treading lightly at times, we too are concerned about leaving and having the resident traumatized by one or more staff members through ignoring calls for assistance, slowing down response time, coming in and turning off the call light but leaving and not returning for at least another 20-30 minutes.

She was hurt. She was embarrassed. She felt alone. A once capable leader in the business community with great responsibility now has to spend endless time waiting.

Not knowing, she’d had another “incident” with the facility that added to the day’s weight of being “different” and “not wanted” later explained her feeling lost and forgotten.

The night before, she’d been so sick she’d thrown up all over herself. She turned on her light. NO RESPONSE. She waited and worried as her sickness continued to take its toll. SHE CALLED OUT. No one came. After what must have seemed like an eternity, her phone rang, a friend was calling. “X” was in tears and said she couldn’t get anyone to come and help her.

Long story short: phone call was ended by caller; second call was placed and Nurse Manager was requested; Nurse Manager accompanied by Floor Nurse responsible for “X’s” side of the hall came in and apparently their demeanor did not suggest they were concerned for “X”s” welfare as much as they were about how long it had “actually been” from the time of the incident to the response.

Instead of ensuring “X” was well attended to, “X” feels like she’s receiving the third degree and when the Aide returns, “X” feels the cold and frustration the Aide generates because she’s been “reported”. The rest of the night, “X” tries to care for herself not wanting to endure the discomfort she feels is generated in the handling by the Aide as a means of retaliating against the “report” made on her.

WHAT’S WRONG WITH THIS PICTURE?  One of many residents who live in fear; taking whatever treatment they’re given because speaking up, speaking out, asking for help is not adequately overseen by higher administrative personnel with authority – they go back to their offices in other, more remote parts of the building, and staff knows they’re really not to be “bothered” for such trivial matters again.

It’s a holiday. A time we’re supposed to celebrate with others. A time to share Joy and Happiness. That is, if you’re included; if you’re a part of the “festivities”.

What had happened?  SIMPLY PUT:  THERE WAS NO PLACE IN THE INN FOR HER.

Just talk with the Administration, the Head Nurse and get it straightened out?  

The System itself is in great need of overhaul, of procedures and most importantly of knowing that there is “zero tolerance” of residence neglect.

I can only imagine how “X” felt in the dining room surrounded by images of being alone, without family and not even identified by name on a table where she should have been included.

ASHAMED. EMBARRASSED. Wanting to run away but without the physical ability to do anything more than move the lever on her chair and pray it still had enough charge to get her from the downstairs dining room back to her upstairs room without stranding her.

What’s needed to provide quality individualized service in Long Term Care Facilities?

• Effective communication between and throughout all levels of service and administration with a total Open Door policy promoted and posted throughout the facility.

• Residents seeing effective leadership. Total community awareness of remedies taken and challenges facing through Monthly Meetings with Open Invitations posted throughout the facility to provide transparency

• Responsibility at all levels – every problem, every challenge, belongs to every staff member

• Zero Tolerance for resident Neglect and injury.

• Admininistration that’s highly visible within the facility and actively engaged with residents on more than a “friendly” basis providing a feeling of safety and concern

• Open Door policy and in the lobby a listing of each name, title and location of all offices.

• A Suggestion/Recommendation/Complaint Box with forms laying beside them on each floor and in every “public”place for both residents and guests to leave comments and questions.

• Prompt attention to and response to each inquiry, concern or question. Maximum five business days response in way requested: phone, email or in person.

Reality Check: Time & Clocks in a Dementia Driven Person's World

In our individually busy and hectic worlds, we look forward to being somewhere there are few or no clocks, no reminders of the passage of time. We long for a place where there's "nothing to do". 

ENTER A LONG TERM CARE FACILITY AS A RESIDENT and you're in this place where time often stands still but I doubt you'll really want to stay for very long.

Let's set the stage for the Long Term Care/Skilled Nursing Facility:  Residents are primarily in wheelchairs or use self driven mobility "vehicles". A few use walkers. It's rare to find some residents walking on their own or using canes. Many have visual challenges and anything at a distance or of "average" size is often not visible or able to be "seen" by most residents.

Remember, there are many residents with some form of Dementia and they're in various stages of ability to recognize and interpret visual information.

Contrary to current belief by many, Dementia isn't relegated in LTC/SNC's to specific "Alzheimer's Units" or other "segregated areas". 

In Mom's most recent facility, it was obvious there were fewer than 10% on any floor without some form/stage of Dementia and each floor accommodated about 50 or more people on two "wings" while the "Alzheimer's Unit" or "Special Neighborhood" only accommodates around 20 residents.

How well would you get through daily life without a clock nearby?

CLOCKS: How many clocks are there? Where are they located?
               What type are they?

Residents can have a clock of their choice in their room and can wear a watch or use a timepiece. The challenge is keeping them due to "disappearances" that can even include the resident or roommate who has Dementia "borrowing" or even throwing the item away.

Finding and purchasing a watch/clock that's easy to read is also a major challenge. We know. We searched high and low. Clocks with traditional circular faces became impossible to read; the brain no longer understood this abstract layout and the eyes/brain had difficulty comprehending the number "4" meant twenty minutes past an hour and not four minutes past; the 8 was difficult to read as twenty minutes to the hour or forty minutes past. These more advanced reasoning skillsets diminished and disappeared.

Clocks with arabic numbers and arranged linearly worked best. We opted for an alarm clock because Mom could hold it in her hands and place it closer or farther from her eyes as she wanted.

Mom wanted an alarm clock always in her room until about four months before she passed. In the last year of her life, we were replacing them about every three weeks. 

We searched until we found one that had lighted numerals thinking the color and the large size would help. That worked for a while, except as Mom's Dementia progressed, she didn't realize if she placed the clock right side up or upside down.This digital clock wasn't everywhere; clocks are becoming scarcer and scarcer to find. We couldn't afford to buy more than one at a time so we would constantly pray the one place, the only place, we'd found this timepiece would continue to carry them and have at least one in stock.

Mom was functioning with the clock out of retained habit; remaining ability and remaining desire. 

Mom went from resetting her alarm (through random pushing of buttons as her ability to retain this skill apparently left sometime during her first year at this facility) to closing it in the drawer of her nightstand, knocking it off the side where it hung until we noticed it or somehow disconnecting it from the wall plug and putting it anywhere she thought about at the time. 

However, Mom was still in the stage of recognizing items from her life and "needing" them to be there even when she couldn't use it.

We went through this with less safe items: iron/ironing board, pots and pans on stoves, sewing kit with needles. It was a progression -- the lessening of her mental and physical abilities to accurately and safely use every day items.

The challenge for us was understanding when she'd arrived at a stage where it was less safe for her to have access to certain things. It was the reversal of building certain skillsets -- as you would do with a young person.

No one gave us any advice; no warnings. And, care givers cannot always go to a meeting because someone has to stay with the person needing care giving. This is another of my "advocacy" for understanding and recognition of agencies and organizations to provide connectivity. Our connectivity with organizations gave us such little help, so small an amount of information and often incorrect information because it was all geared towards Alzheimers and Lewy Body Dementia is "a horse of a different color".

We constantly played "hide and seek" trying to put the clock back for her because she "had to have it" and "needed it to ring at 5 AM so she could get things done". The alarm clock became a fixation perhaps because it was one remaining constant of her previous life that helped her hang on-- to a life she didn't want to leave and wanted to return to--a life where she was in control of what she did, when she did it. 

I didn't see that then; I do now.

At the time, we didn't recognize or draw inference or conclusion from finding the clock on the floor, upside down or broken. And, no one counseled us, no Social Worker, no Doctor, no Director of Nursing, no Administrator. 

No one guided us, no one cared enough to have any kind of "information meetings". The facility and its entire organization joined with The Alzheimer's Association and co-sponsored some "talks" held in large facilities with large groups of people but NEVER offered any on site group meetings or any education from their "MEDICAL STAFF".  

It was as though Mom's Dementia progression was seen but not heard, not discussed and certainly not recognized especially for its specific type, Lewy Body Dementia.

We believe the reason for not acknowledging Mom's decreasing abilities and growing Dementia, Lewy Body Dementia, was the requirements for more personalized care necessitated by Medicare guidelines. That would increase cost to the facility and cost cutting was evident everywhere.

Because this type of behavior (the clock being somewhere else like under her nightstand or broken) wasn't typical for Mom, her brain, we believe "invented" a little boy who came in and did these types of things -- dropped, threw and even moved things around. 

I WONDER:  An active, involved mind, capable and creative.......
Are Delusions really "made up stories" or are they a means the brain is using to cope with a situation it knows should be different, has always been different, and so "invents" a scenerio that upon general analysis (little boys have always been characterized as "mischevious" and more so during Mom's early years) is seen as "delusional" yet makes good sense if we use analytical thinking and understanding the life of the individual?

PERSONAL NOTE:  The Lewy Body Dementia brain for us seemed to be a never ending source of adaptation for as long as it could resist the building of the blockages. We would marvel at how Mom adapted and adopted to changes, much as she had all her life when challenges in work and in her marriage necessitated her being resourceful and creative.

CLOCKS IN THE FACILITY RECEPTION AREA ON THE MAIN FLOOR:

In the Reception area in Mom's facility is a traditional clock located on a side wall of the Receptionist's desk area. It's the type that has the numbers arranged from right to left around a circle. Another clock, small in size, a table decoration with roman numerals sits in the "living room" area on a side table. More visual for visitors than for residents and certainly more capable of being read.

CHALLENGES:  Locations. The clocks cannot be read easily by anyone in a wheelchair unless they're positioned at an angle that allows visibility. Many Dementia patients lose the ability to read this type of clock and need the type that displays the numbers as a time, e.g.: 5:15 PM. 

Anyone who wants to know what time it is in the reception area has to stand at the reception desk and look to the right or with good eyesight can see it from a few other select locations. But you have to be standing. Only in one small area, the entry into the receptionists desk, can anyone seated really see the time on the clock that hangs on the wall.

TICK TOCK TICK TOCK  Time passes and how do residents "know" when it's time for breakfast, lunch or dinner or shower or whatever?

Simple. Most are told. An Aide lets them know when it's "their time" to eat. Notations on who eats where determines when the resident is "told" and of course, general status of the day determines if they're told or "let to figure it out" on their own. Usually that happens, especially with advancing Dementia by someone saying, "Why, "Mary", aren't you going to breakfast/lunch/dinner?"

However, in this usually understaffed, underserved facility (as so many are), sometimes Aides forget who they've told and who they haven't and only when they notice it's too late to go down, offer to sit them in the floor dining room or bring a tray.

That's complicated because often the food served upstairs isn't the same as what's available down and the only alternative at this "late time" is finding a sandwich inside the floor's refrigerator. A practice that was discontinued; food on the floor became a rarity -- a violation of State Law, not to have food readily available but no one really cared. Again, reports and outcries fall on deaf ears because there's no ability to enforce any standards without specific standards in place.

Aides know the routine: tell a resident it's time for breakfast and they need assistance (many of them) to go to the bathroom.

You see, only the most capable can use the bathrooms on the first floor. The seats aren't high enough and there is no one to assist you -- they're typical public restrooms with one stall as "handicap" with side rails and one stall regular and little room to move around in if you have a wheelchair.

SUMMARY COMMENT ON CLOCKS:  Seniors with advancing mental and physical challenges need easily read clocks placed in several locations highly visible and with numbers and letters displayed in a format easily comprehended: Example: 5:30 P M and displayed in a color or colors promoting easier "reading".

CALENDARS.  Try to find one displayed in Mom's facility. Residents were given a calendar every year but it was their "right" to display it or not and for those who couldn't get this flexible and flimsy paper calendar affixed to their wall (or a family member didn't do it for them), the calendar often "got lost" either misplaced in a drawer, thrown into the trash (presumably by mistake) or "carried away" by another resident who's state of mind didn't realize it wasn't "their room, their things" and no one noticed, was supervising or cared to see items in the room were missing or there were "extras" that belonged somewhere else.

HOW DO RESIDENTS KNOW WHAT DAY IT IS?  Well, if they don't have their own calendar, or it's not displayed on a "calendar" type clock in their room, or they don't have a TV or other means of "hearing" the day, date, time, weather, who the President is or any other information on the current world.... THEY DON'T. Yet they're asked in the MDS test mandated to be given if they know what day of the week it is, the month, the day and the year.

OH! My mistake, someone usually writes it on a blackboard (writes usually, not prints, so it's difficult to read) that's in the hall and supposed to list activities for the day. WHAT SHOULD THERE BE?  A large monthly calendar with large numbers and a ring that can be moved from one day to the next; a resident could even be "asked" if they'd like to move the ring. A WEATHER INDICATOR -- What the weather's like today and what's forecast for the rest of the week. 

ASK YOURSELF:  Without your cell phone, without a computer in front of you, without any means to check the date, would you always know what day it was? 

Do you sometimes get confused as to what day of the week it is? 

If you're inside a building often with no windows in areas where you are or/and curtains are drawn by a roommate who controls that part of the room -- how do you know what the weather's like outside?

MY BELIEF:  Residents in facilities age quicker and become demented due to the conditions under which they must live. Little exercise, little access to information and lack of interest in them as individuals.

They may lose track and eventually lose interest seeming to be even more "incapacitated" than they really are OR to have "lost interest" or even worse, "be depressed".

QUESTION:  How do facilities make accurate records of the capabiltieis of residents and their mental capacity when most are kept unaware of these basic everyday facts?

CONSIDER:  You go on vacation and you have no access to cell phone, phone, internet, books, magazines, newspapers, radio or any form of "world information".  You have no clock or calendar.

HOW LONG WILL IT TAKE YOU, SOMEONE ASSUMED TO HAVE "NORMAL" ABILITIES TO LOSE TRACK OF ANY ONE OF THESE AREAS OR TO AT LEAST FIND YOURSELF QUESTIONING: What time is it? What day is it? What event or person did I last hear about?

AH.....PROVIDING INFORMATION TO RESIDENTS.... another topic to consider:  How Residents Are Kept Complacent and Focused through Information Deprivation and Select Sharing of Topics

BLOG ENTRY TAKE AWAY:  Sensory deprivation and information limitation or selective provision can be a factor of the advancement of Dementia not being considered and should be addressed.

Thanks for reading and sharing. Please add your comments. Discussion and open consideration of Dementia in all its forms will lead to a better quality of life for millions.

First Holiday Without Both Husband and Mother: Sorrow Turned to Joy

Joy and Sorrow. 
A new beginning bringing me into the light of others  -- Joy.                         
Making the double trip to visit their grave sites, both in the same day -- Sorrow.

Mom had a long life. Husband's was too short. Both suffered; husband from the medical challenges brought on by what we believe was medical error and Mom's complicated by gross human and institutional error.

Neither should have had the deaths they had. Both deserved better. That is not always our choice or our ability, though.

Grateful for my daughter who each day stands with me as we stand beside one another as we did during the long journey with her father and grandmother; a journey she willingly made, step for step as the later days with her father and those with her grandmother moved to their inevitable end.Grateful for my youngest son who stands alongside us and is there for us in many ways. Sad for my oldest son who's chosen to separate, who cannot find within himself what makes family more than numbers, more than time.

Death is difficult when you're older; when you're young and it comes directly into your everyday life, it's a weight like no other.

Joy. We've found times to rejoice; to be happy but always reminded of the missing piece, the part of us that is no longer.

Thankful. Daughter's as resourceful as I am. We're both indebted to Mom who taught me and modeled for her the adaptability and true love of one family member for another; the selflessness and the strength to face head on whatever life dropped in your lap, whatever came, even the unwelcome or unwanted.

Spent a day finding joy in being together. Daughter and I on this side reaching out by visiting the two separate and distanced grave sites. And then, back among the living to visit a cousin I've become closer to these last few years. We grew up across State lines and seldom saw one another even though we were only a few years apart in age.

I never realized the closeness of our ages until recently. I've never focused on age and because I was born late in life to my Mom and she had so many brothers and sisters, I was on the edge of two sets of relatives -- the older and the younger.

We came together after my husband's passing when I learned she was in the hospital "over here" having a double mastectomy. I was amazed at her resilience and at how quickly she was recovering. It was also a little difficult as it was the first time since my husband's passing in the same hospital that I'd found myself back in a hospital room there.

It had been at my Aunt's birthday party celebrating her 90th  when I noticed my husband wasn't feeling well. Just a few days later, we went to the hospital and began our nightmare journey. That was the hospitalization where he picked up MRSA and no medical person saw it for what it was and his primary care doctor didn't recognize it when he went back for a check up. 

That was the start of our family's journey into almost total darkness; we held to the light even when it was only a flicker; today we shine the light for others.

My cousin and I had been together when daughter and I gave Mom a "surprise" birthday and we celebrated by going "out to the country", to the small town where several of her brothers and sisters and their families lived, to celebrate with Mom's sister-in-law, my cousins' Mom, and other family members. 

This was still a difficult time because the woman who tore our family apart falsely reporting me for Elder Abuse of my Mom and managing to get her to move into a facility, was still visiting, as she continued to do until Mom's 99th birthday. It was very obvious Mom's Lewy Body Dementia was taking more and more of the ebb and flow of her life. 

We had next to nothing; giving Mom a party, purchasing a cake and a few other things was stretching the money we did not have, the money we kept praying would continue to come, and the gas to travel over an hour to be with family, we rationed going only back and forth to the part time/temp jobs we had trying to survive another day, another week, another month. 

My cousin and I and my daughter had had a laugh over Mom and her mother, Mom's Sister in Law. At Mom's birthday party the two older women were both reminiscing and each of them said about the other, "I really think she's losing it; she doesn't seem to be like her old self" to their own daughter.

In truth, they were both beginning separate journeys my Aunt would first succumb to -- Dementia and complications -- and then Mom -- Dementia and complications. But we had made the journey, taken the time, brought them together for what would be the last time on this earth. And they were happy. Today's memories made yesterday through taking action.

When my Aunt passed, we took Mom to the funeral. She realized what was going on and to everyone she seemed quite "with it". Daughter and I saw and knew Mom was still in the "hiding" stage where she could laugh and smile and react to people; she could tell stories and because no one knew the details were mixed up, out of order and often unrelated, she appeared to be "quite capable for someone her age".

Now, here we were, the "next in line" generation. Cousins who once played together in their Grandmother's back yard or danced together to the music of the Uncles who all played different instruments and entertained whenever family gathered. Music that was "old"; music that was not "current"; music that was a special joy I'm sure they're sharing today and that's what Mom was looking forward to finding again.

My cousin surprises me. She retired early and she's worked for several years in her community helping to preserve and restore historical homes and businesses. This is the small town Mom chose to return to for her burial, the place among many of her family members, her ancestors.

She has this huge ring of keys that opens doors into the past, doors into the lives of women and men, children and adults, who lived and worked, who've gone before us. Once accumulations of lives stacked and gathering dust and grime, the doors now open and life that once was comes flooding into view. Not a museum, a living history; as though the people had just stepped away; had just went down the street or across the yard.

The buildings are amazing! You walk inside and return to a totally different time -- somewhere between the 1880's and the 1940's as everyday furnishings and even jars of left behind canned fruits and vegetables of the day are on display as though the family had just walked out the door to return any time.They've been restored but still need restoration. Most of all, they're "time capsules" faithfully and lovingly renewed and preserved by my Cousin and people of the town and I'd never known they existed although they've been completed for several years.

Memories. So many memories.

It was a surprisingly good feeling to tour these houses and walk in everyday footsteps of a family, in many ways just like ours, who lived, worked in their homes, celebrated together and lived their days much as we did and do, together and separately.

It was fascinating to see what was left behind. What was saved and put away. What was prized and valued. The everyday and the special occasion. The early years and the later years of a lifetime.

We know the feeling of walking through the remnants of life; of what was left behind, put away, set aside and never to be used again by the same person.

The challenges of knowing someone will never return; this isn't a business trip or a trip to some great place around the world. There will never be another time they come through the door, repair anything, cook a meal or even change a light bulb.  Those small little actions and big significant times are now the past. Only Memories. But thankfully they were chosen to do and to have then so we have them with us now.

It was a good feeling, though. Very much like other times when I've talked to someone who's also been "through the gate" and walked onto a path alone.

Knowing these people, these family members, lived and breathed, loved and lost, were born and died -- gave us a sense of unity of the human spirit.

Today, I took some old cards out of a drawer. Can't remember when I put them away. A couple appeared not to have been opened but I can't believe I wouldn't have opened a birthday card or a "special" card given "just because".

Cards within the stack of old Christmas cards. An anniversary, a birthday and a card given for no special reason but just to say "I love you" -- not usual for my husband; he was often the one to forget until the last minute birthdays and anniversaries. But there they were, as though a special plan was laid some time ago in some way for me to find these cards. And, a card from Mom for me; a birthday card, one of the last she was able to get and to sign.

Admittedly, I was never one to collect and organize pictures although we took many. I didn't assemble around our home these mementos. We made memories. We did the best we could at the time and with what we had. We made mistakes. We created great opportunities.

Joy. Sorrow. Today. Tomorrow. Time run together. People brought together.Lives of meaning and lives lived together for one another.

A difficult time, this first Christmas without both husband/father and mother/grandmother. Each day we continue. More steps on the path of life we started together and now travel differently. Daughter and I. Relatives and friends.

Life in all its complexity and in its very simplicity.

Robin Williams LBD Found

First Written December 21, 2014

Robin Williams was a man of many faces and voices; he made us laugh at ourselves.

His departure, though sad and untimely, gave a brighter light shining on Dementia, especially Lewy Body.

The beginning of a whisper about a form of Dementia thought to be  "rare" and "seldom seen".

Actually it was all around us but unseen 

It's still "early in the game", ten years from his death, which was

I started an entry on my blog (but set it aside and felt now is the time to publish this entry) when I read the medical report on his brain biopsy and would like to recount how the Dr's added the LBD "was not noticed" within his lifetime and still cannot commit to specifically identifying the disease unless all currently known "signs" and "inclusions" are at a currently accepted high level at that autopsy.

Our multigenerational family lived together for almost four decades and did not see Lewy's beginning or see through possibly years of advancement and neither did so many others.

We were fortunate to be there at the end with Mom and to have finally found the right diagnosis, albeit not one the facility supported due to the terminologies currently used by medical diagnosis of "possible" and "probable" before death and autopsy.

In her memory, while she was alive and now that she is no longer daily with us, I live to write, to speak and to raise awareness of the challenges within facilities of recognizing Dementia, especially Lewy Body, in the general population and not just within the isolated units and not just Alzheimer's.

Let's work to see and work with the "masks" of Lewy Body, realizing our loved ones are not "gone" and certainly "not forgotten", they' are simply walking alongside us as they always will but following a different path.

Thank, you, Robin, and all who blaze a trail for us to follow. You may not be with us in body but you definitely are in spirit.
In Tribute:

Robin gave us many gifts of lasting value. This gift of discovery of another "face" and "personality" adds to his great ability to reveal life beneath the surface of what we see or chose to see.

Robin wore the mask of Lewy Body Dementia, it appears, and the whole world watched and did not see beneath the mask.

Robin Williams legacy is multi faceted. Perhaps his greatest will be his ability to poke and prod people into thinking a little more and laughing a lot more while recognizing eyes, ears and minds are most functional when they are open and receptive.

Culture Change: There's A Co-Ordinator For That, at least in the State of Missouri

How many Seniors die every day waiting to be recognized as individual human beings living in Long Term Care Facilities?

My stomach, quite frankly, turns when I read that in my State of Missouri there is a philosophy, as in others, of “taking your time” to use “An Organizational Readiness Assessment Tool” for Cultural Change – change that refocuses from an institution mentality to a human being mentality.

Mom didn’t have the time and neither do many who enter the doors of facilities.

This attitude, in fact, is exactly what I’ve been blogging against for so long – taking time and making more backwards than forwards progress on the part of Long Term Care Facilities.

We even have a Missouri State Culture Change Coordinator!  As if adult human beings, supposedly skilled as Medical and Social Welfare specialists cannot on their own, of their own accord, with their own trained abilities, IN specialized Long Term Care “Medical” Facilities, recognize the need to honor the human being entrusted to their care through ensuring individualized treatment and service. We need to employ someone who can manage and ensure the word is delivered in a “tone” and with a “positive directive” to bring about “willing compliance”. Interesting. Human lives lost or greatly negatively impacted and we’re willing to wait for LTC’s to “adopt” and “adapt” to cultural change providing basic human rights?  Where do we live?

 What exactly does that say about the progressiveness of the United States society and its treatment of an exploding Senior population?

 Does a Dr approach all his/her patients with the same diagnosis and treatment?

That's what Long Term Care Facilities have often done OR treated them like a “group” with similar needs or the need to eat, use or take part in whatever is “offered”, “available” and “in stock”.

Why change? Why make the expense? Take the time? Do anything “radically different”?

Medicine is supposed to be individualized care – if it’s not, you might get the same surgery or medication the person who walked through the door before you did. Does that make sense?

Watch the Dr make rounds at a facility.  How much time does he/she spend with each patient? Two to three minutes?  How often does he/she actually do more than take a pulse and listen to a heart and possibly review a chart?  

What privacy is given even to these “prelimnary” medical procedures?  NONE usually. I’ve seen LPN’s administer shots to residents at the dining room table because it’s more convenient and easier for --- WHO?--- staff, of course.

On websites I’ve seen Drs and other medical professionals cite the LTC faclities as being “medical facilities”.

Really???  I’ve not visited one that has any type of examination room to provide privacy for examinations. What about equipment?  Do they have any medical equipment?  Resuscitation Paddles?  Guess everyone’s supposed to just “pass” once they move through those doors?

From what I’ve seen, everything has to be “brought in” by a medical service; many of the services “just happen” to be owned and/or operated by the same people who own the facilities.

MEDICATIONS?  There’s an “ap” for that – meaning there’s a connection with a specific pharmacological company. Ever notice how your loved one is “switched” to another type of drug that, in the opinion of the Facility Dr. is “better” for her/him? Oh, it might take a few months, but more likely than not that will happen.

WALKERS, WHEELCHAIRS . . .  if you’re one of the “lucky few” to have the personal funds or wherewithal through Insurance coverage, you’ll have the ability to get your choice of equipment.

Medical equipment at every LTC facility I’ve visited is “brought in” and not kept on premises.

TESTS?  A Nurse can draw blood or collect a urine specimen – SOME CAN, THAT IS.

One of the hardest times I witnessed in Mom’s last months was the horrible attempts made by staff members to collect blood – poorly trained and infrequently requested to make a draw, they’d poke, prod and create area after area of black and blue skin.

And don’t get me started on the incapabilities of the LPN’s to catherize or to get a Urine sample through catherization. TRUST ME, you’d run as fast as you could away from this type of “medical care” because you’re able. Our Seniors have to take what they’re given, endure whatever “haphazard” pokes and resulting infections they receive AND THEN WE, THE PUBLIC, ARE TOLD HOW RAMPANT URINARY TRACT INFECTIONS ARE IN LONG TERM CARE FACILITIES!

LPN’S are the highest level of medical service mandated within a Long Term Care Facility in the State of Missouri any time after the “regular” Day Shift, usually between the hours of 7 AM and 5 PM.

To me, if I'm supposedly in a Medical Facility, like a Hospital, or this "step down" which is what LTC's are supposed to be, I want someone trained and experienced at a higher level of medical expertise, an RN, at least "1" for the whole facility, around the clock.

DO YOU GET SICK DURING REGULAR HOURS?  DOES YOUR CHILD OR YOUR PET?  Do they really want us to believe, the Administrators of LTC’s, that older men and women all sleep through the night and have no need for qualified, competent, experienced medical personnel round the clock?

Truth will set you free but first truth will make you sick to your stomach if you face it and see if for what it is.

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TRANSPARENCY: #1 State Laws, Rules and Regulations

Consumers deserve clarity, consistency and above all, truth in advertising and in delivery of goods and services from those who regulate and provide so that they and their representatives know what they’re actually getting when they sign on the dotted line and make a commitment to relinquish various rights and responsibilities to a facility or a person.

 
I’ve spent almost four years trying to unravel a web of people and words that make up the system of providing housing and health care in Senior Long Term Care. Every corner I turn, every page in the thousands I’ve reviewed, convinces me the system is long overdue for the light of Sunshine Laws to shine through and for specific business laws to be enacted to ensure the safety and well being of a precious commodity, Seniors.

 
Aren’t our Seniors worth as much as our children? How about our pets? There are more laws, more outcry and more organizations devoted to ensuring the health and well being of animals and children than of our Senior population.

 

Try to read your State’s Statutes and their guidelines on Senior Care. It’s a maze of words and if you use the internet you’ll find dozens of possible click throughs and referrals to various other sections and subsections.

 

Why the confusion and complexity?  Are Seniors all lawyers or legislators that they can understand the legal language and the numerous citations? No, of course not.

 

Maybe no one has considered the importance of better regulation of Long Term Care Facilities and Senior Living facilities because in the past, the number of Seniors using these places has been limited?


Today, however, it’s a booming business and a business with regulations from programs like Medicare and Medicaid but few real regulations on the administration of daily services that fall under the heading of non medical provisions although they are critical to the health and well being of residents and families.

 

#1  Each Department of Health and Senior Services should be an advocate for Seniors as well as a Regulatory and Review Board. As an advocate, there should be clear, concise and common language reports detailing each and every visit made to each and every facility within their jurisdiction and NOT just a summary of the findings and a summary that corrections were made. It is there, it’s just hidden beneath so many layers that few people find it.

 

#2 Let’s see a detailed list for the last three to five years of each visit made by the DHSS of each State by date, specific cause for the visit – a report to the Elder Abuse Hotline, a call from a concerned relative or friend and specific concern -- published on one State reference site for ALL facilities regulated by the State in which they're located.


NOT summary statements. NOT synopsis. NOT limited to most recent. ALL calls and inquiries by date, by status of follow up, by type of complaint classified in clear English as to whether it was negligence or abuse and the specific type of concern: sores on feet, UTI possible Sepsis, fall (and when and where), use of equipment causing possible risk or harm.


#23 Concise yet accurate and easily understood actions or conditions that can be reviewed easily by potential clients, customers, residents, committed Adults to Long Term Care Residential Centers.

 

Harmful to their business?  False reports can be made?  Simple. Detail any unjustified, unsubstantiated findings and ensure on the report this is made totally clear.


A Better Business Bureau for the Business of Long Term Care.


The housing and complete oversight of human beings deserves more attention and detail.


Do you want to take a chance it won't happen to you? Do you want to buy your care giving in a facility where you may not be able mentally or physically to make a change based on not knowing how SAFE and SECURE the facility has been for others?

It seems ironic to me that we "take" people, human beings, that our State can take people, human beings, to facilities where there have been violations of Human Rights and drop them off, leave them alone without direct connection to family or friends and even tell family and friends to "let them adjust and don't visit for X amount of time" -- which some do.

Children react when dropped off at a new school
Animals react when they're put in a kennel or have a new caregiver
BUT WE DON'T ALLOW OLDER HUMAN BEINGS TO HAVE FEELINGS ABOUT LOSING THE LIFE THEY KNEW, the place they may have spent their entire life, the things they had and accumulated even if we see it as "junk" or "lots of stuff"?


ABANDONMENT or at the very least a feeling of being LOST, FORGOTTEN, SET ASIDE....

REMEMBER:  Whatever your age now. Your day will come. You will, if you live long enough, most probably "need" or "have to" enter one of these facilities.


YOU AND I are paying with our taxes for some, with what we earned, with what we set aside, with what we scrimped and saved to ensure we could "take care of ourselves". 


We are paying high prices and often getting minimal, non acceptable, highly questionable provision of goods and services often from people and companies that believe they're "doing their best with what they have" and "fighting the system day after day to just get bare minimum payment".

As for me, I've been taught it isn't how much you spend but how you use what you have and how you determine what's best for someone else based on their needs and not on your wants as being the priority.

SENIORS AND THOSE ON THE ROAD TRAVELING IN THAT DIRECTION must awaken to understanding society as a whole needs to value people and let go of stereotypes and preconceived ideas. Whether it's a racial or ethnic or whatever "basis" used as a "standard" of life, realize it's not right, it's not best and it's socio economically destructive to hold these "stereotypes" and "preconceived ideas" about GROWING OLDER.

Share these thoughts. Explore other sites and their challenges with Senior Care. It's great when someone says they're "loving" where they live. Let's make that the feeling and experience of all.

It's OK to Remember; It's OK to Continue to Mourn

It's not that I go around each day focused on my life that used to be. 

I don't "live in the past" and I truly have few regrets.

For me, it's a few triggers of sight or sound that bring to the surface feelings and near tears, even, after almost four years for my husband and almost one year for my Mom.

Please don’t let well meaning friends or relatives tell you to “move on” or to shake their heads and remind you HOW LONG it’s been and you’re still here and so on and so on.

As with so much of life, it’s in the actual day to day living where we understand what the walk of life we’re taking actually is. Anyone who believes they know “best” or at least “better” always walks away, remember that!

Yesterday I went to a mall; with our financial situation, that’s a rarity. I had business to do. Work to do. And a short window of time when I thought I’d just walk through a local department store that’s been an anchor of the center for decades.

The competition and changes are everywhere. The day after Black Friday and the store didn’t look like it had been “picked over” but more like it had been “looked over” – meaning people chose to go and spend elsewhere.

Interesting to remember when we had a small business and our landlord put a direct competitor in one of our primary retail sales areas into the same center claiming “competition is healthy”. 

Actually, as can be seen throughout the retail sales chain today, there are various levels of competition and some levels actually undermine and cause the demise of long standing businesses. So appears to be the case for the retailer I visited yesterday.

Some effect could have been the last few day’s of protesting brought into our local area Malls by demonstrators from Ferguson. 

This Mall and many others are far removed from Ferguson but many people from the area shop beyond the community as Malls in their direct area closed many years ago due to merchants having challenges with declining sales and rising incidents not positive for their business. So, they moved elsewhere.

What tugged at my heart was walking past a department where last year I looked for an outfit for Mom. 

It was a particular maker that made clothing for the more “mature” figure. Elasticized pants that had become totally necessary as pulling up and closing a zipper, buttoning a small button and a waistband that didn’t “give” with the challenges of standing and sitting, were too uncomfortable and too difficult for her and unwanted by staff who assisted Mom in so many daily needs.

It was the realization there would be no Christmas shared with Mom this year; no scrimping and saving and looking for a bargain as we had for so many years to continue to ensure she, at least, had a little “joy of the season”.

Daughter and I couldn’t afford to buy anything for one another; day to day, struggling to bring in money to make the mortgage payment and utilities, put gas in the car (the car we were given as a gift by my younger son; older and many miles but still moving and keeping us able to work), and food on the table. 

We’d stopped “celebrating” holidays and birthdays for ourselves except to wish one another a happy day and make the best of whatever we had since husband’s medical challenges and family needs took us to this level. But we always found ways to ensure their needs were met and beyond their needs, too.

We could give up the house; my last ability to have something to fall back on when my day comes to “go forth” and out into that dreaded life of living in a “home”. 

As with my Mom, don’t want, really prefer to “go” before that happens but facing through living the realities, how possible this time is and how important it is to have something to “buy your way into” a facility. Otherwise, you’re really at the mercy of availability and get the lowest possible living arrangements because you’re, as Mom used to put it, “on welfare”.

Not the best choice. Even with recent challenges. We move forward and we move onward. Daughter and I support one another; some see this as “unnatural” yet these same people are the first ones to tell us how it “should be” and, of course, walk away.

Mourning. Living. Coping. Surviving. Sometimes we’re fortunate to have someone come alongside. Sometimes we struggle alone. It’s life in all its complexities, like Mourning.

Mourning/morning. Words that sound alike and are alike in many ways. Both represent beginnings after endings – life and a day. Both bring changes and Seasons. Each provides a place to start, a time to go through – a transition.

Life is a journey. Remember it’s your journey. 

Honor others but listen to your heart, to advice from those who care and to those who truly care about YOU as those will be your best guidelines and guideposts as you move forward.

Peace of Mind: Stop Ongoing Abusive Behaviour

It’s almost December. January and another new year with two anniversaries of death will soon return; my husband’s on Jan 5 and my mother’s on Jan 10, on the third anniversary of my husband’s burial.

 
You don’t forget or set aside these times, these dates, when the people who passed are intricate and daily parts of your life who you loved, cared for and about.  

 
Visiting Mom’s gravesite is a little difficult but I know other relatives visit when they go to see their own loved ones. We’ve found remnants of flowers, a potted Pansy (for remembrance), on Mom’s grave when we visited several weeks ago. It’s an hour’s drive to the site and a gravel road, not great travelling in this cold and uncertain Winter weather.
 
Visiting my husband’s grave is far more difficult even though he’s buried much closer. Although I’m still comforted by surrounding gravestones with memorable sayings that gave me solace when we looked for a different gravesite for him, for me and for our daughter and her future husband, it’s disturbing.
 
I can’t go as frequently as I’d like because I won’t be buried with him. My oldest son has made that impossible. I will not allow myself or my daughter, and she is of the same opinion, to be controlled and manipulated by him or by the cemetery who calls our situation “a family matter” and refuses to stop the abuse we’re enduring.
 
We won’t continue to be abused now and we won’t be afraid of a future where my oldest son or his heir(s) might refuse or make the whole process of burial and saying goodbye full of hostility and regrets.
 
When I agreed to inter my husband’s body in a cemetery different from the one we had planned, actually just across the street, it was openly discussed within the presence of a representative of the Cemetery

• (1) we had available burial space, free and clear, titled to me, within the other cemetery
• (2) both sons had shown through their reactions and our talking they would prefer not to have their father buried in that cemetery due to its lack of care and maintenance
• (3) I was not able at the time to cover the amount required to inter my husband but would take over payments
• (4) I negotiated the lowest possible payments over the longest span of time believing as times passed we’d both (daughter and I) get jobs and be able to make minimal payments,
• (5) daughter suggested burial with us and her taking responsibility for 1/2 of the cost and myself 1/4 and we would purchase 2 graves with possibility of four internments, 2 in each, and  
• (6) it was agreed by all I would be on the contractual agreement

My oldest son was given a copy of the contract on the first day we visited the “new” cemetery – the day before we actually made the decision and the commitment to inter my husband. It was a significant additional expense and I was basically asking both my sons for help with burial assistance due to the debilitating expenses of both my husbands long term medical challenges and the costs incurred with my Mom’s growing care needs and our having used all resources we’d accumulated.



On the second day, when we decided as a family to have the burial at the “new” cemetery, I recall asking my oldest son when he went outside the conference room “to check on the contract’s being ready” if I should go with him and his telling me it wasn’t necessary as he was just checking. Then, when he came back, asking him if there was anything I should do and his answer that nothing was needed at that time and he’d signed the contract. I asked if they needed me to sign and he said it wasn’t necessary.
 
He lied. Plain and simple. Nothing new. Same problems we experienced when he was younger; same problems we experienced in our relationship with him and also with his wife. You don’t think straight when you’re mourning; when challenges are coming right and left as life throws curve ball after curve ball.
 
I cannot chose to live with the emotional abuse his ownership of the gravesite provides both me and my daughter. We don’t know which of us might need that site first, daughter or myself; God alone knows.



The law provides no rights to our daughter.. Oldest son and his heirs hold all the rights of internment and monument erection as everything currently stands.


He knew it. He received a copy of the contract and I did not. Again, over a year of medical caregiving and emotional distress with husband’s more than 100 days hospitalized almost all in intensive care/critical intensive care and the ongoing challenges faced by the woman who abused Mom – neither of us were thinking, considering or believing this son, this brother, would abuse us – again.
 
The Cemetery is owned by the same religious denomination who turned their backs on the abusive situation caused by one of their members; who told us we had to forgive the woman who abused Mom and our family.



What to do? How to regain my rights my oldest son took away and this religious denomination turns their back on remedying? Walk away? Be buried elsewhere? Cremated? The choice is not just for me; the choice also involves my daughter.

 
We’re deciding.  We’re focused on ending the abuse we’ve endured for almost four years. If we decide to move my husband, the cost will be extensive and there are legal procedures with high costs.

On our forty second anniversary, my husband lay in a hospital bed in critical intensive care. I couldn’t find a card in the hospital gift shop. I saw a child’s “Magic Slate” and wrote a special message I placed it where he could see it:  “Happy 42^nd, Darling!  In Sickness and in Health, To Love and To Cherish”.

 
Now, our oldest son, violates our vows as he changes the words: “Let no man put asunder” the joining together of husband and wife, of my husband and myself, and instead makes even more meaningful the words, “Til Death Do Us Part” as it appears I will be forced to do by my oldest son.