Saturday, January 31, 2015

New Term for Senior Care: A Wonderful Concept

As I walk this life journey, I give thanks for the directions I move into and through bringing enlightenment and possibilities to others.

Here's a site I've found about a way of life for Seniors I didn't know about and as with so much in life, depends on "stumbling over". It's about "The Green House Project"

It's wonderful to discover there's someone else out there who's been able to use their time, talent and has the finances to positively provide for Seniors who deserve and need to be valued and honored for all the days of their lives and for what they have given to all of us.

Click though and check out this amazing concept and movement:

Move Over Nursing Homes....There's Something Different  

YOU CAN HAVE A POSITIVE INFLUENCE. Speak up. Speak out. Tell your friends and family about what you read. The good and the not so good. 

Start the Serving Our Seniors Movement by speaking out, writing, spreading the word.

The concept of the Shahbaz -- someone who actually, truly cares about their life's work; caring for Seniors.  Read this interesting story about the Legend of Shahbaz:

The Green House Project:  Proven Tools, Resources & Partnerships
  The Legend of Schabaz   Adapted from What Are Old People For? How Elders Will Save the World by William H. Thomas, M.D. Reprinted by permission of VanderWyk & Burnham, Acton Mass. Copyright 2004 by William H. Thomas.

Thursday, January 22, 2015

A Tie That Binds: Picking Out Burial Clothes for My Husband

I remember when it was the first year without my husband. 
How can it be four years since he passed through this life? 

How did I move through that time, those days after the early morning of his passing? Then I couldn't have written about those times. Now I find the words come to the surface and seem to want to be seen and heard. 

I still get a lump in my throat and tears that form deep inside. I've not found it easy to cry since we parted. I don't know why.

For me, it's taken this long and going through the total change that happens when the cycle of your living/dying experience has moved past a point that only each individual life marks. For me, it was his death, Mom's death and the death of our long time family pet, our cat. 

That was my personal "death sequence"-- time of beginning, different perspective, moving into another phase of life -- a change as significant as night into day.

With my husband's death, I went through a few of his things while our sons were in town for the funeral and gave them "memories" to cherish. 

I admit, I haven't totally cleaned out "his" closet today . Some clothes still hang where they were placed, some by him and some by me as I moved them and chose a few to "give away" to those in need and keep others both daughter and I were too "attached" to as memories of times spent together.

For me, because he traveled as much as he did, it was simply like those times. I knew and I know, he's not coming back, there is no return, and that's not why the clothes still hang. I, we, are going through our transitioning in so many areas, making our way through bare bones survival, seeing a little bit of light, finding a few "pieces of sunshine and starlight" along the way. It's a long, challenging process. We're still on that journey.

His ties. How I loved to find a "new" tie for him. He wore one almost every day for business. A new tie was our way of "stretching" clothing as we stretched so many other things to provide other opportunities for our family. 

I went through the vast number we'd accumulated and memories flowed. Special events, times of new beginnings, even those times of sorrow for others who passed, came to mind when looking at each one.

I pulled this one and that. Taking them down, holding them up and out, passing my hand across the fabric, feeling where a knot was tied here, a hand may have smoothed there. 

A connection that was ending with each hour that passed; a separation beginning to feel like a chasm opening and swallowing me and everything around. 

I moved from one task to another, I tried to remain organized and focused. 

It was like moving through jello. A familiar feeling I would live with for many months to come.

I remember picking out the clothes my husband would wear for his final journey.

That was difficult and yet I remember doing it as I would have for him at other times.

A labor of love. One of the last familiar labors.

For most of our married life, he traveled for the work he did. I was "used to" his leaving and being gone an entire week and sometimes over a weekend.

I often helped him pack making sure the things he liked to wear were clean and ready to go. Making sure the "little things" he needed in his "Dop Kit" (don't know, think that goes back to a military reference; he was in the Air Force) were full: shaving cream, razor and blades, deodorant, combs, nail kit, cologne, etc.

Those were the days "on the road". He didn't stay in "nice" hotels that provided these items; chains then didn't set out anything more than a bar of soap. Not the type our sons stay in where they get to rack up points and reap the rewards. 

Besides, when it's your business, you cut corners and make do and find ways to stretch because the bottom line is, what you spend,you don't have to pay yourself, to provide for shelter, food and all life's possibilities that come when you have a family to consider.

It was also somewhat cathartic, going through his clothes, it reminded me of the many times we went "shopping" and, again, of the closeness we had, the sharing and the caring.

Not a suit, I decided. Yes, he had a few and he'd worn them more recently, primarily for funerals, or very important business meetings. No, I decided on a sportcoat and jacket, one I knew he chose to wear often . . . and a special tie. 

Although I didn't realize it then, I didn't want to have my last sight of him, before we said our final farewell face to face, before we stood and watched as my husband, their father, was permanently removed from our sight, from being there for us, to be in clothing that reminded me of a funeral, I preferred to remember him as I'd known him in life when he was so vibrant and so much a part of life.

And casual but still "business" pants, a belt, socks, shoes and even underwear. 

Funny, we know how we dress each day but when you gather together the items of that ritual it seems strange to put together these items, some more intimate, more basic, with those that speak to the world about who we are, how we see ourselves.

A tie was definitely needed. But which one?  His Rotary tie?  

I wanted the funeral to be on Monday, he passed on a Wednesday. 

I wanted it to be at Noon. 

We were married at Noon.  The Rotary met at Noon each Monday.

My husband was a Rotary President. He believed deeply in their motto, "Service Above Self". It was a part of our lives long before he joined the organization.

My eye goes to a tie I hated to part with but realized it was the only "perfect" tie. The tie that truly bound us together. A symbol of great memories, challenging times and of our life together: a tie I'd found by chance, much more expensive than I'd ever spent and only bought when returning to the store I found it on a "clearance sale" and knew it was there, at that time and so was I. And it was. My husband loved the tie. He wore it often. I'd given it to him for his birthday. Now it would follow him as his birthday celebrations came to an end.

It was a beautiful, elegant, old world drawing elegantly showcasing the world and various international symbols. Describing it makes it sound "busy" but it wasn't. The colors were more muted and everyone who saw it complimented him on its uniqueness. Like him. Like our life together.

It was the perfect choice -- although I often wish I had it with me, could touch it, could see it and could feel his closeness through it once again

No. It was the right choice. He often wore it with the sport coat and pants I'd chosen, so it was truly the perfect choice for me to make to send with him on this final journey. And so I packed it.

In the inside pocket of his sport coat jacket there was a piece of paper, regular size like a letter is written on. I placed it in his outside pocket.

It was a registration form for a special community training program. Sometimes he had a habit of placing those in his outside pocket and so I did this for him. He was always looking to share the opportunities he was given and this was one his health had interrupted and he never was able to complete.

Did I mention I can think about these actions and my thoughts at the time better now than I could then? I moved through everything, all the planning and all the rituals seeing and hearing but somehow as though I was the coat on the body and not the person inside. 

I walked, talked, did what was needed and tried to do what should be done but somehow "I" was apart from everything being done.

My husband. My life. Met in college and dated for four years. 
Spent forty two years together in marriage. 
Moved down and over the rocky roads and smooth sailing times, always together.

Yes, as the bells tolled and we drove up to the front of the church, we were about to walk down an aisle that was shorter but longer than the one we walked down at our wedding.

You went before me instead of beside me. Friends and family carried you, standing in front and beside you. Honorary and actual, your sons, your friends, people who held special places in your life, now walked with you on this final journey escorting and sharing the responsibility of walking together as they walked in life, beside you and with you along your journeys.

This Noon ceremony would be memorable, would be meaningful but would also be the beginning of our separation, the first in a very long time.

The only certainty we faced together was not knowing how long a separation lay before us and that's no different than when we walked down the aisle so many years before, side by side, leaving the church to begin our lives together, this life we now celebrate and honor.

Today, four years later, I know:

Each life journey begins and what we see as the end may often be another beginning.

Tuesday, January 20, 2015

Discovering Thrush In Mom's Mouth As She Lay Dying

Just reading over The Kaiser Commission on Medicaid and the Uninsured and as usually happens, my thoughts return to areas of neglect and abuse within the Skilled Nursing/Nursing Home facilities industry. 

It's a long report but worth scanning through and picking up valuable information on neglect and abuse in facilities.     

Here's the link:
http://www.canhr.org/newsroom/newdev_archive/2013/ACA%20Nursing%20Home%20Report.pdf

I'm going to be taking sections of this report and putting into later blogs with our own experiences and observations that continue today, incidents and events from a personal point of view. No human being should be subjected to any of these let alone all we witnessed being done to Mom and all we've seen being done to others.

The report seems to "minimalize", while stressing the importance of change, the actual incidents and occurrences of Neglect and Abuse in Senior Long Term Care Facilitates. 

No one talks about many of these areas and quite honestly few who come to visit give it a second thought. 

People who do these "personal cleanliness" functions daily don't think about it, they "just do it".

Having traveled to some of the less sanitary or advanced areas of the world, my daughter, who's walked among people living in garbage dumps in South America and I, who have travelled the Caribbean before high rises and multi chain resorts brought "civilization" to communities of people living without running water and in tiny lean to "houses" the size of a large dumpster, made from cardboard or if they were very fortunate, cast off metal roofing, have seen and understand unsanitary conditions.

I understand there, I DO NOT UNDERSTAND HERE, IN THE UNITED STATES, and more exactly within facilities that receive tax payer dollars for their support and continuity and who are supposed to be "monitored" and "regulated" to ensure the safety of each individual UNDER THEIR CARE AND TOTAL SUPERVISION.

I've mentioned a little about our last days together with Mom, my daughter and I. I've not shared the heartache and the sickening feeling then, and what I get now, when I realize how Mom was neglected during her life and in her death. 

Oh, there was "show" of care and concern at the last; and some real concern by one special LPN who truly did care; most, however, "steered clear" of us, my daughter and I and we got the feeling they were positively anticipating Mom's death because we were always watching and always concerned about her care and her health while living there -- and other residents, also.

They're surprised we're still around. We have others in the "community" we see being mistreated and neglected and we, with their permission, are vigilent and there for them in whatever times of need or just as "friends" doing what we can to make their lives a little easier and less filled with hopelessness.

MOUTH SORES AND THRUSH.  

Mom had sores in her mouth and when we removed her teeth while spending the last days with her, we discovered thrush in her mouth -- very well developed thrush.  

No one had apparently cared enough in some time, especially while she was in her last days, to clean her teeth or even remove them from her mouth, rinse them and check her mouth for sores.

Mom may have died with Lewy Body Dementia, but it was the neglect and the complications of poor medical care that really took her from us.

It was obvious Mom could not do for herself; you didn't need someone to point that out. 

And, other times when she was sick with Urinary Tract Infections and other illnesses, we found the sores and the thrush and so much more.

We were so challenged by life and all it was putting in our path we sometimes didn't think, didn't look. And, sometimes when we visited Mom was "not in a good mood" so trying to check her mouth and other personal hygiene factors didn't always seem like a good idea.

And, too, often there was a major event happening: sores discovered on her legs that were weeping, compression stockings so tight her legs above the tops were swollen to twice their size, nonexistent nurse call button w cord (not attached to wall, not anywhere to be found) or a myriad of other significant challenges we had to address and resolve through numerous channels and ensure they were addressed, were resolved.

Our care for Mom wasn't just in visiting her and bringing her something she might like.

We were always vigilant, always trying to check and double check, feeding, toileting, cleaning up and taking care of.

Yet, with all we did, tears often come because I feel I could have, should have done more for my mother and so sorry I did not have the ways or means to provide more for her because of all the losses we incurred and all the challenges we faced.

BEFORE YOU ASK: We made so many calls to the Elder Abuse Hotline, to the DHSS, to the Ombudsman's Office, they must have thought we had them on speed dial. 

We were responsible for numerous facility "special visits" by the DHSS. 

AND, AS FOR CHANGING FACILITIES:  We had experience through stays in Rehab Centers within Skilled Nursing Centers that showed us you were often moving "from the fying pan to the fire" AND WITH ADVANCED DEMENTIA, people do not adjust well to change, especially a change of living space. Mom at least had a window to look out of, we were close by and could be vigilent and she had space in her room for her reclining/lift chair -- which was more than she had or we could find at any other facility. WE DID LOOK. WE DID TRY. It just wasn't meant to be is all I can believe.

Read the Kaiser Report and you'll find a section on "under reporting" by local DHSS representatives charged with filing reports on "incidents"; it will be a subject for a future blog entry.

I'm writing this the day before the one year "anniversary" of Mom's passing.

Can't think of another term for this day but certainly not one to "celebrate" as that word implies. I'll be publishing this entry several days later. I often write ahead; sometimes my train of thought, my ability to find information or just my writing comes faster and sometimes life happens and I can't find the time or the right thoughts or additional information.

Yesterday we visited one of our friends at the facility. The facility was on its best behavior; people couldn't have been nicer

I'd heard on New Year's Day from another resident the "rumor" about the State's Annual Inspection and a visit "the next day". That, I thought, didn't sound right because of the holiday but knew the facility's "license" was due for renewal and soon the DHSS would come.

Yesterday, though, EVERYONE said hello to our friend, stopped to talk with her and just couldn't be more cordial.  At least three different people "stopped by" while we were in her room to invite her to do something or see if she needed anything. NOT AT ALL USUAL.

YES, DEFINITELY. The days are ticking by and someone has provided "advance warning" to SET THE STAGE and diminish any "negative" reports.

YOU SEE:  It's really quite simple.  If you replace poor treatment with good treatment, even for a short time, minds that are affected can only relate to the latest experience and anything they might "say" could be taken as "possibly a delusion or misinterpretation" because they'll also mention the "good treatment" they're receiving.

As for others, it all depends on if they're even asked about the facility. Not all are, you see. We never received notification THE STATE DHSS was visiting. Correction: One time there was a posting on the entry door when the DHSS spent an entire week "investigating".

But, as always, the facility "corrects" whatever they find and another year of returning to old practices and old ways gradually and sometimes quickly -- returns.

Think I'll write another entry SETTING THE STAGE: THE ANNUAL DHSS VISIT MAKEOVER and hope you'll return to learn more about Senior Living Facilities, Lewy Body Dementia and life during and after being a caregiver for two family members.


Sunday, January 18, 2015

LEFT BEHIND: Loss of Talent, Ability and Mentoring

Baby Boomers Unite!  Let’s demand, as we did when we started the “revolution” more rights, more inclusions and more recognition as we go forward into needing the support of society.

What has happened to us? We were so vocal about issues and causes. 

We still raise our voices and many of us are actively involved in change, but as a whole, our voices are much quieter and raised more singularly than when we were in our teens and twenties.

There are, of course, exceptions and their aging faces and graying hair are visible (ladies tend to cover that feature more than men although those products have greatly grown in popularity with the "graying" of America) and seen even on LinkedIn.

What's needed is to ensure that when our bodies become more limited through the passage of time, when we are more limited to where we can go and even where we can live, society doesn't see this as "the end" and treat us as though we barely exist.

Long ago we realized people can work from home, they can commute across time and place and work far into decades that were previously considered "mandated retirement".

The tools we have and the opportunities we're given result in what we can and will do.

It's no different for the aging and the aged than it is for our youth.

I admit, I wasn't a picketer and didn't carry signs or write messages and distribute them when I was younger (that came along much later in life). I was more of a conformist working behind the scenes for change in society.

Let's get our communities and the Senior Centers and Senior Organizations to recognize our talents, abilities and contributions still viable and vital to society and to ensure this message is delivered and distributed to all ages and stages of life.

Let's "reactivate" and find our voices and raise them for our brothers and sisters, some of whom are our age and others who are from the generations before us. 

We have precious abilities only time can teach and experience can "hone" -- yes, we're like a great tool and like that tool, keeping us "sharp" and "in repair" benefits our habitat, our surroundings, life itself.

LET'S NOT GO QUIETLY INTO THE NIGHT.

This means:  Please realize many of us are NOT INTO Bingo, board games or puzzles. If you're going to offer computer technology, recognize there are many of us far ahead of the "beginner" or even "familiar and interested in learning more" stages. 

We want to learn specific programs to create and to stimulate; our brains need the exercise and expansion and not to just duplicate what we've known and done for years on end or have no interest in learning or participating in.

We need mind stimulation. We are, after all, the first largest demongraphic group where college education became "the norm" for a large percentage of high school graduates. 

Our generation was in high school when man landed on the moon. We had parents who were scientists and teachers and other professionals who steered us on paths involving science, math, engineering, business. And even if they only graduated from eighth grade, they had open minds, loved to learn and were our examples of dedication and perseverance.

We Did Overcome -- to some degree:

We were told men were wanted in various positions but it was our generation that fought and won and got that high heeled foot and body into the doors -- sometimes later than others -- of major corporations and into the C Suite.

The Pill changed our lives. Our focuses on growing ourselves as well as our families and supporting our husband and his job changed society as a whole. And he didn't have to worry about so many mouths to feed as his father before him; but then he didn't need those hands, either, to work the land or help to feed the family.

We were born into a world of "separate but equal" and we opened the doors and windows for future generations to walk through and see through.

WAKE UP AMERICA:  You wait for us to come to you. You offer us centers with “activities” ranging from Bingo to cards and maybe some “dancing” – which for many of us is a turn away because we lost our spouse and don’t feel like joining the “stag line” as we did in our teens waiting and hoping for someone to ask us to dance.

You plan all activities during the day as though we have nothing to do with our time and that’s the only time we can or will attend. And, what about weekends?

I guess you see "other groups" as occupying our time: church, grandchildren and family, educational opportunities through a myriad of places: library, local colleges and even on line. All obtainable by reaching out, taking that first step and, quite honestly, wanting to stay within a basic "safety zone".

And then there are those of us like so many I've met in these last few weeks who are "still working" because where we worked and for whom we worked didn't provide a pension, didn't have "retirement programs" or who have found life circumstances of medical or other debt from the huge economic challenges we've faced every decade since the 1970's have eaten away and basically destroyed "our golden years".

What's puzzling is how we manage to compete, to stand resolute and to continue to make our own way when:
  • You “put us out to pasture” long before we’re ready and long before we want.
  • You categorize us as not being capable of learning, adjusting, being tech saavy; we can run rings around you given the exposure and the disposable income of those younger and we do when we have those abilities.
Why? Because we have the experience, a higher level of judgment and a knowledge beyond many, those of us who have successfully weathered storms and made decisions others face and “hope and pray” no one will realize they are making a decision based on trial and error.

CHARACTERIZATION.  Focus on the weaknesses and that's what you see. 

Yes, there are those in the 50+ range -- that's the range "Senior" organizations like AARP and OASIS start at, or the 60+ which encompasses the State Run Senior Centers, who are vibrant, active, many still working full time jobs and even more in part time and highly responsible volunteer positions. There are those with limitations -- but not always the limitations the most vocal in our society want us to believe and see a specific, and only one specific, way.

LIMITATIONS.  Society starts culling around the age of 40 now. 

What's concerning is my daughter's generation, the Millennials, are having such difficulty getting jobs that by the time they're just getting to be "ripe" and "seasoned" in the outside world, it will be their time to be "put out to pasture".

Guess we should be glad we're in the United States and not in Spain where the outlook for the Millenial generation is even bleaker at 55% of the population of this age group unemployed.

SCARY!  If the young are unemployed and underemployed what does this say for the future and for the "next" generation coming up the ladder?

Friday, January 16, 2015

The Whole Person Needs Primary Care

When someone you care for or about has medical challenges, you wish there was more you could do.

We visit, call, write and often feel our hands are tied as we wait.

Some of us serve as direct caregivers and walk alongside wondering where we're headed and when we'll get there. The same questions we always ask when we embark on a journey and don't know the distance or the path.

The closer the person is to us, the more challenging our vigil is.

What's needed is insight and overview from more than a "medical" perspective. Training, experience and knowledge can provide insight and possibilities but it's the individual that will determine the outcome.

What's missing or what's not seen is often where the person is and how to come alongside.

Medications and treatments are aids; finding ways to bring quality of life to illness is as important as bringing quality of life to everyday life only with adjustments.

Understand that this time is special. It will not come again in the same way. 

To be beside this person is a gift only you can provide.

Vigilance is part of keeping vigil. 
Watching the person and watching all that surrounds them.

There can be some who come alongside, who proport to bring assistance, relief, comfort bringing instead their own needs and wants above all else.

Remember, too, the person you serve is there beneath the challenge, inside the difficulties and wanting out as much as you want them to be.

Measure the road ahead with a ruler and the road traveled with a yardstick.

Weigh the hour in ounces and the days shared in tons.

Simply be there. Simply let them know you are there. 

Listen to what others say with kindness but listen to the person who's being talked about through their life and their time with you.

Lives aren't written in stone until they become epitaphs. Change can always happen.

See the flicker of light in deepest darkness;know tomorrow will surely follow today.

Above all, know the person who you keep vigil over values what you do.

Wednesday, January 14, 2015

The Numbers Game: Facility Approved Dr’s Have Captive Audience

How many Dr’s does your loved one’s facility have listed as “approved” to practice inside their location?  

What's the population, the average occupancy and usage of this number of doctors per month and per year?

Facilities must retain records; should know which Dr sees what patient. If using the computer at minimal functioning ability this information should be easy to access.

How many Dr’s are currently accepting “new” patients in case your loved one decides they or their representative are not satisfied with the medical care being provided?

We wanted to change. We couldn't get a “current” list; the Director of the Facility didn't have one and neither did the Nurse Administrator, the only RN required by the State of Missouri. 

It took three weeks. Why? Good question. First we were given a “couple” of names: one no longer worked for the facility and one was not taking new patients. Next “offering” produced two names not accepting new patients. Finally received ONE NAME possible; new Dr accepted by facility.

Do you have the full information on the Doctor who attends you as resident/the person you’re responsible for in a Long Term Care Facility?

Is this information available in the room of the resident posted on the back of the bathroom door or some other “safe” but visible place for those needing to know? At the Nurse’s Station or on the computer?

And, above all, have you checked to make sure your resident’s records are current? When we once checked ours, the facility had “failed” to update and still listed the old Dr on Mom’s personal record.

Yes, it is important to “follow behind” and ask for an updated printout of the main sheet of your loved one’s general file, the one they send with the resident when they leave for an outside Dr apt or ER or other medical appointment/transfer.

Do you have a complete list of all Dr’s currently accepting new patients at your/your loved one’s facility?

A list dated and including name, type of Dr (MD or DO), specialization(s), office(s) location, name of practice, office telephone number, exchange number, emergency number.

You should not be dependent on a facility to provide this information or make it available to you or your representative when you can “meet with” or “get through to” the person or persons with the “authority” to distribute this information. This was the case in Mom’s facility. And it changed. We never knew who did what, who was responsible for what and who to ask for what. 

Another entry; another time. Understanding the “politics” and “titles” at Long Term Care/Nursing Faciliites.

Critically Important Take Aways from this blog entry:

You are giving up rights currently held by individuals outside of Senior Long Term Care/Nursing Facilities TO CHOOSE YOUR OWN DOCTOR when you do not have this information. You should not have to ask for this information; it should be readily available to all residents and their representatives. See below re computer accessibility.

This is, in my belief, against the rights of people with disabilities to treat them differently from others, to NOT provide the ways and means for those who cannot be transferred or for personal/medical reasons are incapable of being transferred, to a Doctor outside of a Long Term Care/Nursing Facility -- current and accurate contact information on an individual basis, placed directly in the hands and at the immediate reference of residents and their representatives for all medical personnel, Dr’s, approved to practice at a facility.

SOAPBOX TIME:  Let’s have it put online! The list of Doctors affiliated with each LTC/Nursing Home facilitiy.

TRANSPARENCY. SUNSHINE LAW. AVAILABLE TO ALL CONSIDERING A FACILITY.

Shouldn’t you have the ability to check out the Dr’s practicing at a facility as easily as you can check out a Dr “on the outside” through the many on site resources to see their medical records, malpractice suits, etc. etc.?

You and your loved one are making a substantial financial and time commitment. You’re entrusting your LIFE to their medical personnel, their Dr’s. Even if you have an outside Dr, you may still “employ” the facility Dr.

AND THAT’S THE KEY, dear blog readers, YOU ARE THE CONSUMER. You have rights!

CONCERNS YOU SHOULD BE VOICING TO YOUR DHSS AND LEGISLATORS:

  • Long Term Care/Nursing Facilities have taken away the Dr/Patient relationship by coming between the two and relaying all requests and concerns without including the patient or the patient’s legal representative directly with the Doctor.
  • Most facilities do not have scheduled days/dates/times for Dr’s to visit. They come when they want to. The facility isn’t on a system of “rounds” and they are not truly “on call”.
  • Representatives of residents appointed or with Durable Power of Atty for Healthcare should have the ability to find out when the Dr will be visiting the resident. There should be appointments for the DHSS mandated visit interims (if there is such a thing; must check).
  • Residents and their representatives deserve medical updates especially test results provided directly to them following receipt of results. If a second test is usual, this step should not be excluded and all responsible parties should be advised of this procedure when the first test is done and the results when the second test is completed and results received by the facility.
BTW, if your resident misses a Dr’s “visit” to the facility, they wait until the Dr “comes again”. How can this happen? If the resident isn’t “on the floor” the Dr may not include them in their “rounds”. They have no responsibility to ensure the resident is located to ensure they are seen “this time”. Unfortunately, this is now some diagnosis are not made, some minor problems become major issues.

My second son thought that a Dr on call at his Grandmother’s facility meant if she or a resident became very sick that Dr on call would make a personal visit to the facility. NO, meant he/she could be reached by telephone for consultation by the facility.

WE ARE IN THE COMPUTER AGE.
  • Facilities have websites if they’re any type of business wanting to stay in business.
  • There should be resident/representative specific information available on Permission Level pages

Monday, January 12, 2015

Death In A Facility Often Warrants Investigation and Autopsy

When a baby, for no apparent reason, dies in their crib, we mourn.

When a Senior dies in a facility, we simply say it was "their time" and go on.

How many autopsies are performed on Seniors who pass while living in a Long Term Care/Nursing Home facility?

As usual, another question and my fingers begin searching for an answer.

A question brought about thinking back to our not being told about several of Mom's falls, about the real extent of her injuries and about the real reason the fall happened.

Not being told about many of Mom's illnesses until they were so advanced and the "medical facility", the Long Term Care/Nursing Home, was unable through the services they "chose" to provide, could not control progress that was controllable and we had to once again, RUSH Mom via ambulance to the ER.

I see medical incompetence, negligence or abuse. But then, I'm just a family member.

And, because of the horrible journey we were forced to go through with Mom preceding her death and during her final journey, her final days.

Once again, what I find is not only shocking but information we never see unless we happen to "run across it" in our busy lives. 

Yet, every day we're entrusting our loved ones to facilities, signing contracts, making commitments. Many walk away totally entrusting the life and death of those we care deeply about to people who are continuously hiding inappropriate behaviors and actions.

"An array of systemic flaws has led to case after case being overlooked:

When treating physicians report that a death is natural, coroners and medical examiners almost never investigate. But doctors often get it wrong. In one 2008 study, nearly half the doctors surveyed failed to identify the correct cause of death for an elderly patient with a brain injury caused by a fall.

In most states, doctors can fill out a death certificate without ever seeing the body. That explains how a Pennsylvania physician said her 83-year-old patient had died of natural causes when, in fact, he'd been beaten to death by an aide. The doctor never saw the 16-inch bruise that covered the man's left side.

Autopsies of seniors have become increasingly rare even as the population age 65 or older has grown. Between 1972 and 2007, a government analysis found, the share of U.S. autopsies performed on seniors dropped from 37 percent to 17 percent."

So what difference does it make, cause of death?
Look back to Point #1 -- cause was brain injury from a fall.”

But elderly people fall all the time, right?
Not all elderly people and not all falls are inevitable.

However, a fall in a facility reported as a cause of death would lead to another State investigation and that would be a "double inconvenience".

It might also prevent the neglect provided by low staffing, inept training and poor supervision.

Point #2: "In most states, doctors can fill out a death certificate without ever seeing the body."

Makes sense, they prescribe medications by phone on request from LPN's and often these are medications with serious side effects that are NOT fully explained to the resident and/or the responsible representative.

Mom's Dr didn't see her as she lay dying. We called upset because Mom was not being given any food or water. The facility had seen Mom as "dying" so they simply didn't provide any and provided absolutely no consultation or advice to us as to how or what to do including taking a damp cloth and wetting her lips. NOTHING.  And the Dr didn’t bother to “drop by” just to check on one of her patients? AND THIS IS LONG TERM “CARE”?  MEDICAL CARE?

Two days we went through this. On the third day, she finally passed. We have no idea how long she had not had food or water and if this could possibly have been the "cause of death". We do know she looked dehydrated and as though she'd lost considerable weight.

When you're "run through the wringer" as we had been for so long, you function as best you can.
You try to think and reason and act at the highest level but you ENTRUSTED your loved one TO THIS MEDICAL FACILITY and surely they will act, will provide, will ensure medical services are provided.

Once again I feel guilt. Did I do the right thing? Was she actually dying? Or was it what we did, what we went through with her the way we did that brought about her life's end before its time? 

We mourn the child because of the life that never was. 

We mourn the Senior because of the life that ended in ways that should not have been.
 

Wednesday, January 7, 2015

Childlike: A Label More Negative Than Positive

Ever hear someone say about a person with Dementia how "childlike" they are?
To me, that has a "negative" connotation.

Negative because we don't usually say to a child, "you're so childlike". 

And we don't say to those who are beyond a certain age as Adults, "you're so adult". 

We feel perfectly comfortable, though, referring to the actions and behaviors in Seniors as "childlike" and allowing ourselves to believe this is acceptable and expected aging. 


We fail to recognize Dementia isn't one size fits all and Seniors have the ability to take offense at hearing this "labeling" of themselves or others in this way. 


When we use the term "childlike" we often believe the person this refers to is incapable of understanding, or hearing what was said. They often do and they often are.


Those assignments of behavior values are generally used when we're comparing and contrasting actions and words to expectations of what we think should be seen or heard.


If, however, we use a comparison once used with men versus women (that's "feminine" or that's "masculine", for example) we would be looked at by society as being "chauvinistic" or "feminist".


As a society, we need to remove this Senioristic set of labels that starts early in today's life expectancy. 


Too soon we begin to devalue individuals with "Seniorism" and "Ageism" and then we feel comfortable with adding additional labels, e.g., "childlike". 


Demoralizing, demeaning and unflattering. We spend years of our life working to leave this time behind, to become independent, self sufficient, capable, productive and more. Then to be told, or have someone talk about those around us, in our age group or a little older, they're "childlike"? 


It's offensive for those who can hear and understand and those are who should be considered. It's as offensive as talking about someone's religion, skin color, sexuality, gender.


In the United States age denotes ability; advancing age or achieved age brings specific and absolute levels of ability and capability seen as "good" or "not good". You are categorized and pigeonholed for achieving what we all aim for -- gaining life experience and knowledge. A few are accepted and even revered, most are set aside and walked away from.


We should weigh carefully our choice of descriptive words. 


Using "childlike" can be seen as "loving, caring and wanting to protect" someone. Those actions may be seen as well intentioned, however, they also act as a lessening of the value of a person. 


Just try calling an adult woman a "girl" or adult man a "boy", especially if they happen to be of a certain ethnicity and see how acceptable your "endearment" of "She's such a nice girl" or "He's really a great boy" is taken.


Childlike because of their seemingly constant smiles like one woman I visit in Mom's old facility?  Because of her constant mantra "Honey", "Honey", "Honey"? 


Or perhaps like another woman who always seems to be frowning and everything she says has a "negative sound" like she's angry-- who would be characterized as someone mad at the world and probably always has been.


The first woman's response may be part of her earlier adult life when she interacted with perhaps a husband or family member and her pet name for them was "Honey". Now, this piece of memory remains and she looks for this person all around her and calls out for him/her as her mind reaches out using what remains of this memory.


The second woman may have led a life where being aggressive and assertive was part of her everyday life OR she might be reacting to what she sees and hears in the facility and it's her way of ensuring she keeps it from happening to her.


LABELS are a challenge to all ages and groups in society. They come with varying shapes and durability. Some can be temporary and others permanent. Many do not deserve the permanence or the strength/durability they're given.

Sunday, January 4, 2015

Lift The Curtain And See How SNC's Really Operate: Dining

Let's take a look behind the "marketing" and "tour presentation" statements for many Long Term Care facilities. 

First area of "inspection" -- DINING.

Dining As It Appears:  Walking in you'll see tables, often a TV, maybe it's a combination "community room" used for visiting musical groups or for other uses. You're told how residents are "encouraged" to come to the dining room. How the staff has been trained in "white glove individual service" and it's like dining in a nice restaurant. 

You're told, if for some reason they can't get to the dining room or would prefer to "dine in their room", this is simply accomplished by the resident calling ahead and ordering what they'd like. And, of course, they can do that for the dining room, as well.

Picture if you will someone with poor eyesight given a list with items on it about the size of this type. The list is in columns but isn't organized but just randomly posted. 

And on any given day certain items "may not be available" so the resident, who has difficulty making decisions due to advancing Dementia or just indecisive, now has to make another choice. 

REALITY DINING:  This mulitpurpose room may be used several times a quarter for meetings and other events and closed to residents. Residents must dine in their dining room on their floor or in their room. This can be for one meal: breakfast, lunch or dinner OR it cane be for an entire day.

Dining on the resident's living floor is in a small area where the residents who cannot travel the distance or do not have the mental or physical abilities to sit with others due to either behaviour or limitations are regularly dining. No conversation possible.

Sights and sounds that to the more capable person are not just distracting, they're disturbing; you get to see what it's like, how you'll be, where you're headed. That's demoralizing and can cause the "moods" to be constantly down that are regularly measured as mandated by Federal and State Rules and Regulations in LTC Facilities.

Dining begins and service ends at a set time. If you don't make it, you may have to settle for whatever might happen to be in the refrigerator on the floor and due to "cutbacks" that's possibly now limited to ice cream, bologna sandwiches and maybe some low fat milk.

Why wouldn't you make it to dining on time? Multiple reasons.
Your roommate is in the bathroom and you need to wait until she/he finishes because there are no other bathrooms set up to accommodate your need to have a bar to transfer and enough space for your wheelchair to be moved behind you safely. 

You can roll yourself in your wheelchair but you can't get out of your bed or chair without assistance and staff shortages mean you wait a minimum of half an hour or longer for help that should have taken just a few minutes.

Or many other challenges faced every day by residents trying to adjust and adhere to schedules while they cope with limitations and deterioration.

Table Service isn't just one to one, it's one at a time and each person is asked what they want but no "written orders" are taken so the server heads back to "adjust" the order and wait to have it ladled out. She/he then walks slowly over to the person and delivers it and moves on to the next person. 

Fast food we may not want it to be but faster service would be easier on the residents who often wait over an hour before their turn to be served.

Assistance with anything in the dining room? The lady who broke her back has to ask repeatedly for her dish ring so it won't move while she works to feed herself. IF she wants assistance, she must be fed at the dining area on her residential floor, no accommodation in this dining room. 

Guess it doesn't "look good" to those who might be visiting. Besides, they only have so many "allocated" feeders so they'd have to pay an additional cost. You can always provide it yourself, of course, anything that you'd "like" to have, and pay independently.

REALITY IN-ROOM DINING:  Served from what's been brought to the upstairs dining room you may be served first or last. It's just like downstairs: one person scoops out for one resident at a time. Snails move faster. Then, one staff member takes one dish to one person either in their room or in the upstairs dining area.

Now, all this time, upstairs and down, residents are really lucky if that particular meal someone is kind enough to ask them if they'd like something to drink. They often wait from the time the arrive or are brought into a dining area for service to begin and for their "turn" to finally come to get some form of drink or food -- and seldom are they given within a short period of time of one another.

Room trays are assembled from a "ticket" that's been put together and sometimes the food is "preassembled" and usually very cold and very "tough". It's usually been sitting (goodness knows for how long and where) since someone assembled it downstairs to go up with the carts. It often arrives as long as thirty minutes after everyone's been assembled in the dining area by staff members. 

Many of those who "dine" upstairs on the floor where they live have been started to be assembled at least an hour before dinner's officially scheduled. Some have been sitting in the area almost all day long. Maybe they've been checked on and maybe not; maybe they've been changed, maybe not. Who keeps track? 

DINING ON SPECIAL OCCASIONS.  The facility posts an "Invitation" for friends and family to "join the festivities" and lists a menu with a set cost per person. This Invitation is limited to being posted in one of the two elevators so if you happen not to get that elevator, you don't know about this "opportunity".

Added staff appears for service. There's even someone acting as maitre'de to escort "families" to their seats. Tables are set up specifically for "reservations". It's not at all like everyday but visitors see and believe it is.

Missing are tables or areas for "singles" or "groups" of residents who don't have someone joining them for this "special meal" They're expected to "eat upstairs" -- either in their room or with the people who need supervision and assistance. 

Happy Holiday!

As mentioned about this past Christmas dining, name tent tags on the tables was a nice choice as were the tablecloths but adding "and family" and not having tent tags for residents who wanted to eat in the dining room but did not have a "place at a table" was upsetting.

QUALITY OF FOOD.  Prepared ahead most food is cold to lukewarm. Sometimes "water bath" serving containers are used, sometimes not. Everything is prepared alike; few seasonings and very little salt. But they're heavy on the sugar in the sweets!

Variety is limited. One choice of entree per meal. One set "menu" per meal. You can try to substitute but if it's "forgotten", too bad. And, you have to make sure you call at least two hours before the scheduled time which means you need to call by 5:30 AM for breakfast; kitchen staff isn't around to "take your order" the evening before; the person who does that is gone for the day before service begins.

COVERS TO PROTECT CLOTHING. Need a covering for your clothing because your arthritic hands have difficulty balancing the regular fork and spoon? Even though you use one every meal, no one thinks to put it at "your place". Every day your name is put at a certain place and although you've eaten there forever, no one thinks to provide this benefit for your arrival.

Covers have a nice pocket in the front to catch dropped food but they have a snap in the back even someone with capable hands and good eyes has difficulty closing. I tried. It took several attempts. Ladies with any hair length are greatly inconvenienced because they can't hold up their hair while trying to manipulate and place those small snap and closure in just the right configuration.

DISHES AND UTENSILS.If you want to use "special utensils", there has to be a "special order" for those. So, you struggle to balance food in a small bowled spoon with a very narrow handle you can barely hold onto. Grasping a slender handle on the fork they place in front of you is difficult but it's even more frustrating because you constantly drop food as you try, unsuccessfully, to balance it from the plate to your mouth.

Glasses!  Who in the world provides glasses filled to the top with liquid and expects a Senior to be able to ensure it gets to their lips and down their throat without spilling half the contents?  And a glass so small it's barely capable of holding 3 or 4 good sized swallows.

STRAWS. Ask for one and it's like you're asking for something that hasn't been invented yet. Do they have "special cups" similar to "tippy cups". YES.  What does it take to get one? Waiting half your meal and asking half a dozen times or more. 

Again, there is no consideration, no "remembering" what a "dining guest" likes/needs. That would be REAL service along with getting food that isn't dried out and cold, of course.

A PLACE FOR EVERYONE AND EVERYONE IN THEIR PLACE.  Yes, you can ask to sit with "someone" or in a "group" of people. But if that group isn't hospitable, you're soon looking for another place to sit. If you don't "ask", you're "assigned" and that means it's really difficult and sometimes impossible to get staff to move you or for you to move to another location.So, tables are set with "name signs" and you sit there every meal with the same people, hospitable or not.

It's not dining with whom you want and choices made ach meal to dine with this person or that one.

TV IS ON WHETHER YOU WANT IT OR NOT.  Conversation? Depends on where you're seated. Close to the TV and you can barely hear yourself think but since some residents want it on, it's on. Sometimes I think it's more for the staff, especially in the "floor dining areas" so they can watch their "favorite programs" while serving the evening meal and feeding residents who take a longer time to eat.

AND TO THINK. THIS IS "DINING". THIS IS A "PLEASUREABLE EXPERIENCE" and as such is a "highlight" of your tour of the facility.

For many it's one of the few times they're social. Some days there are no activities. No events. And they don't have the strength in their aging bodies to make it up and down, up and down, up and down, more than three times in any one day.

ASSISTANCE?  At times. But because the facility is almost always short staffed, it's everyone for themselves and so many start down to the lower level dining room far in advance just to ensure they get there on time. 

Of course, those who have "challenges" in weak bladders truly have a choice -- stay on the floor and eat with those who provide no chance for conversation or socialization or take a chance they'll have an accident because there are no restrooms past their room that can accommodate their needs for entry and exit.

MOM never wanted to go into a "facility". She made me promise I wouldn't send her until she had no idea where she was going or where she was.

Well, Julia, the woman who came into our life and used Undue Influence on Mom helping her to "disconnect" from our family didn't have to "honor your mother" as I felt obliged..

Julia saw Mom's declining ability to reason as a trained Registered Nurse AND as someone who specialized in providing care giving for men and women with Dementia. She knew Mom's mental capabilities had diminished far beyond what we realized or saw. 

Julia succeeded in getting Mom and the State of Missouri Department of Health and Senior Services to "consider" and to "believe just enough" to put into action several steps that took Mom from the home and family she loved out to experience the raw, rough and hardship world of living permanently in Long Term Care.

BE EVER VIGILANT, FAMILIES.  Be every vigilant Seniors. It may eventually be necessary as Mom and I always talked about but going before "your real time" is going where there are too few rules and regulations and too little enforcement to successfully ensure the safety and well being of one of our most precious gifts, long life.


Friday, January 2, 2015

Help! I've Fallen Down The Rabbit Hole and I Can't Get Out!

Mom’s old Skilled Nursing Facility "loves" PNR medications!  Especially the kind that are for "pain" and for "discomfort", emotional as well as physical. Imagine many facilities love these types of medications.

You see, while they may have to be reported to the State depending on when they were “last given” if it falls within a window of time the DHSS requests, they may not have to “list” these because they’re “as needed” and not “prescribed daily dosages”.

Little loopholes mean big opportunities to facilites. They’re a part of the infrastructure of Long Term Care Facilities we never really notice, don’t pay more attention to and don’t realize how extensive they are as a practice.

What happens when you take narcotics? You generally get drowsy, often sleep a lot and you almost always “mellow”. Seniors often sit or lay in bed and require a lot less attention – giving the facility the ability to operate with fewer staff.

I’ve witnessed many “nurses” (those LPN’s responsible for sections fo the floor and specific patients) ‘inquire” or “ask”: Patient A, do you need anything for pain?” OR, “Patient A, on a scale of 1 to 10, how’s that pain you’ve been having? Would you like to have a “B” that’s been prescribed for you ….when you need it?”

Those pills can be addictive. They can build up tolerance and require heavier dosages or types to gain the same effect.

Just like we’re being advised NOT to take antibiotics because of the raising of tolerance and immunity of bugs built around frequent usage of certain kinds. THOSE PILLS CAN BE ADDICTIVE. 

Who advises the residents about this “side effect”? That’s right, that’s the Dr’s place to explain but he’s not there; he’s only available through the Nurse contacting his office and not able to “speak with the patient” when the Nurse calls to request “something”.

I’ve heard these same nurses on the phone to the Dr’s office saying, “Patient A could use something to calm down, she seems to be agitated and doesn’t appear to be getting enough rest.”  

I’ve had the Floor Nurse call me and try to convince me Mom needed “something” to calm her down; she seemed “more agitated than usual” or “a little more difficult to work with”.

Some people like that feeling; many are traumatized by what they consider to be a "loss of control" and a "feeling of helplessness".  With Lewy Body Dementia, there are types of antipsychotic drugs that carry the warning MAY CAUSE DEATH.

Opportunity. Often unnecessary and more often not warranted. Ease. Convenience. Good for the facility. How about the health and well being of the patient?
  
How do you handle these “offhand” requests if the floor Nurse calls and wants to get an "as needed" prescription for "mood changing" medication? 

You’ve been caught at a time when this is the farthest from your mind or daily schedule. It’s not convenient. It would be so easy to accept what you’re told, to just this once let it happen.

It's important to understand the basis on which this drug can be given. There is no mandate the resident has to ask for it. The Nurse or the Licensed Medications Distributor can access the patient's need for the medication and can try to "administer" it to her/him.

BE VERY CAREFUL. This request can also include a sliding scale of levels of medication. We had that happen and almost lost Mom. She was limp as a rag doll from too high a dose and we were very fortunate it did not kill her -- that we were vigilent and arrived in time to take her from the facility to the ER and to have confiscated the drug before it was administered yet again by the same Licensed Medications Distributor.

CAUTION ALWAYS. EXPECT WHAT YOU HEAR ISN’T WHAT IS MEANT. ASK. PROBE. ENSURE. Your loved one’s life itself may hang in the balance.

Here are some ways we responded. We suggested "alternative methods" provided by Teepa Snow and others who are in the forefront of care giving for Seniors and especially those with Dementia.

Questioning what was being done in the facility to provide activities and interests Mom would enjoy, that would occupy her mind and body, that would give her "something else" to focus on.

Suggested Action: Leaving the room and returning after a short time.

Quite simply: What would a parent do with a child that didn’t want to cooperate with a direction that was for their safety and well being or in their best interest? TRY A DIFFERENT APPROACH.

Change The Environment. Take her/him something new that’s “tactile”. Touch intrigues many people.. For Mom, involve her in being busy with folding stacks of washcloths and when they were done, take them out of the room take them apart and go back and ask if she’d like “some more” to do.

Mom needed and many Seniors need, to be active and need to be positively accomplishing something. Sitting around playing games, putting together puzzles, cards or even TV was never their lifestyle. They can’t change now. Their minds are “set” and the best action to take is to honor and recognize their habits and their interests and work with them.

Frustration and boredom are catalysts for people of all ages to do and say things that are counter productive. It doesn’t take much professional training but it does take common sense to look, listen and learn from our Seniors about what values and interests make their days positive.

Every day decisions are being made concerning what medications are given to residents in Long Term Care facilities.

Reports on the overuse of drugs to "adjust" behavior are rampant.


Overuse may also be attributed to Federal and State mandated evaluations where questions about "MOODS" are mandated.

 It's an open door for Dr's to slide through and "evaluate" the "patient" as being depressed or "in need" of this drug or that drug.