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.

Humans Need Touch: Many LTC Facilities Isolate and Shelve

What if some of the "problems" of Alzheimers and other forms of Dementia were discovered to be more social rather than physical?  

Cultures other than the American system of caring for the elderly have provided evidence many behaviours and actions can be managed without drugs or "shelving" people in an institution.

Understanding which parts of the Disease are manageable and moving to ensure resources are available is critical. 

This includes activities both mental and physical are provided in Adult Day Care Centers and ESPECIALLY in Long Term Care Facilities which generally shelve or "park" people with Dementia at certain levels or stages.

Why aren't we cross applying findings in medicine and behavioural studies to benefit Dementia patients?

Touch. Many of our elderly go from day to day only experiencing the touch of another human being providing necessary medical procedures or daily life skill assistance.

These times of "touch" can be more beneficial if the procedure is done in a caring and patient centered way. Unfortunately, observations have been the usual "interplay" is one of get it done as quickly as possible, with as little time as possible and no time to interact or talk directly to the individual to prepare and to encourage.

I've seen more caring from the receptionists and cleaning/maintenance staff at Mom's SNC than I have from most of the CNA's, LPN's, the RN and the Adminisrtative Staff at the facility.

How long would a baby, infant or child survive and how greatly would they thrive if we denied this comforting human interaction?  

Remember the children adopted from foreign countries who were isolated, denied human kindness/touch? How difficult was it for adopting parents and for the children? WHY AREN'T WE WRITING ABOUT OUR ELDERLY and how they're being shelved and greatly ignored all in the name of "care management" designed for the benefit of the facility and not for the benefit of the individual resident.

Speech. How often does someone sit and talk or involve more than one person in a conversation -- even if the majority of the talk is done by the "caregiver"? One on one. Stop and smile. Stop and talk. Recognize the humanity of all with whom you come in contact while visiting a loved one in a facility. Spend a moment and give someone the greatest gift -- human interaction.

Most "interaction" at Mom's facility has a purpose -- analyzing and charting. 

If someone doesn't want to participate in the group activities at Mom's center, they become more isolated. When I visit I see many people who barely get out of their rooms and who are becoming more and more "dependent". Some may have mental challenges but many of those seem to have "developed" with the systems and procedures used in the facility.

One dog and one cat live at Mom's facility.  The dog is older and very set in his ways. He used to take the elevator and go up to various floors and "roam". Now, he lays around, has put on lots of weight and often moves away when people approach him or sleeps most of the time. The cat is "isolated" in the 
Activities Room so only those people who visit that room get any interaction and she, too, is a loner (typical, I realize of cats). 

Occasionally a couple of dogs are brought in to "visit" residents and you can see the joy in their eyes and in their bodies. They virutally light up and wait patiently hoping the dog will be brought to see them. A few residents have family members who bring in dogs to visit. Unfortunately, these dogs often don't see anyone but their owners and I understand they're not "trained" to accept other people.What's needed is more frequent interaction of residents and pets.

Humans thrive using our senses. When they're deprived or eliminated, at any age, our body functions are greatly affected along with our brains. It changes our personality, our outlook, our behaviour.

Let's find more ways to give Seniors interaction with humans and pets. Let's stimulate their brains, their positive emotions and build healthier lives for all.

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.

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.

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?

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.

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

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.

Here's my resource of the day:  http://www.propublica.org/article/gone-without-a-case-suspicious-elder-deaths-rarely-investigated

"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. 

Anniversary Waltz: Mom, Husband, Our Last Dances Together

Slow, slow, quick, quick. The dance of life. The dance of death.

One foot in front of the other we reach the milestone of the first and fourth years without those we love and cherish.

Tick, tock, the clock begins to run and chimes are heard.

Moving back my chair, I hit the clock slightly with my shoulder. Silent for months it starts again. Slowly the pendulum swings and ironically it starts on the day that shows to be correct and near the time it actually is. How? Why?

A clock I wanted and he bought for an anniversary. A memory. Tangible measurement.

Counting the hours, the days of our time together and of my remaining time.

I miss you, I wish you were here.

Another day. Time to run out and pick up daughter from work. Hurry, scurry but be safe and watch out for cars parked along the street that usually aren’t there. Slow down a little and SWOOSH! Oh, my word, can it really be…..

Magnificent in flight, so low it crosses my windshield, above the hood and across the entire front of the car, a quick and beautiful sight.

The hawk, big and beautiful, when it swoops down from the Oak tree on rare visits now, that once were residential times, when day after day it returned, is now flying directly across my driving path, head turned my way, eyes bright and shining, so amazing, so welcome.

The even larger hawk that flew directly in front of our car and over the hearse carrying Mom to her last place on this earth – bigger than this one, boldly flying on a downward angle, wingspan almost as wide as I am tall, paying homage, appearing to welcome home a traveler from this world on her way to rest among family and friends.

Thank you darling. Thank you, God. As always in times of need, of what seems like darkness and never ending strife or challenge, I ask and you answer.

The day will turn to night as always. Tomorrow will dawn and that day will also close. The clock pendulum swings and marks the passing. What’s old is new. We continue in memory and in spirit. Love you, Mom. Love You, My Darling Husband.

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.

Rooms Designed For Personal Failure & Increased Dependence

Long Term Care Facilities/Nursing Homes are obsolete in their room design and function.

They're set up for residents either with high physical function or with no need to access various areas.

We made adjustments to our home to accommodate Mom's progressive age advancement and her physical needs.While some rennovations are costly, others can be done with simple adjustments.

Missouri State Law includes parameters regarding "repairs" mandating if a certain percentage of work is done, a higher level must be done and may increase to the entire category within the facility or a large percentage thereof. 

This doesn't sound "fair" but neither does the alternative which is living in obsolete and potentially endangering surroundings.

Long Term Care Facilities I've visited and where Mom lived expected the resident to adjust to whatever surroundings they were given with very little consideration for their needs, especially in the "common" or "public" areas.

NOTE:  This blog does not address those "high end" and "elegant" facilities where money buys new everything. We write about the average, the most prevalent and the many that are perhaps at least 40 plus years old and showing it. 

Mom's facility had a "face lift" on the very public, very pricey, Rehab Floor, where people came and went and where this was a "showcase" for obtaining future business.

Even here, though, whoever designed the place had in mind people far younger and more capable. Elegant, dark colors predominate. Each room with a large flat screen TV. Few lights, though, and the bathrooms although a little more modern, were still small'; someone with limitations could use it but anyone with more advanced needs would have great difficulties.

The rooms are all one to a space in this "privileged area". Rooms on the "regular floors" accommodate two usually or one if you pay "a premium".

How long has it been since a renovation has been done of the facility where your loved one lives?

How old is the building? How old are the furnishings? How long ago was the bathroom redone?

Chances are the facility has a face lift in the "public areas" but the rooms and the areas used by residents are the last to see any "redo" or upgrades"

THE SHOWER ROOM. This is a separate location usually located down the hall from the rooms. Look as closely as you look at your own bath/shower area. Don't just give it a quick "once over". ASK when it was last renovated. Chances are you'll see by the tile, the grouting, the layout and design, the area used to "bathe" or "shower" will tell the story. Think of what happens in your home with usage; you have to clean constantly. HOW OFTEN IS THIS AREA CLEANED? 

Mom looked forward to her shower(s); sometimes she received more than one a week. Times were at the convenience of the Aides and since they were understaffed, some residents received showers well past the time they'd regularly "go to bed/go to sleep". BUT, IF THEY WANTED THEIR SHOWER, they accommodated. They waited. And often, they were disappointed. One Aide given too many showers and too many other responsibilities just couldn't manage everything.

THE BATHROOM -- one facility per resident room accommodating one person at a time. If your roommate "has to go" you have to wait. In Mom's facility, there were restrooms in the hall. You had to walk the length of the corridor where your room was located (those at the end were really walking far) and halfway down the side hall to get there. These restrooms were "handicap" BUT the size of the stalls were too small to have a wheelchair enter inside and very small for turning around from entering to trying to actually use the commode for its intended purpose. 

ENTRY AND EXIT IN RESIDENT ROOM BATHROOM.  With a walker it was a challenge; with a wheelchair, you had to be a really excellent driver and manipulator. The door would swing closed on its hinges if you didn't place the upright rectangular (about 12 inches long by 6 inches wide) trash can AGAINST THE DOOR.  And it had to be placed "just right" to hold the door open. If you happened to move it, the door could close -- against you and if in a wheelchair, the weight of the door and its size meant a struggle and possible injury.

I often wondered why Mom and other people had black and blue arms or cuts and abrasions on their legs -- that may be the reason.

TOILET.     HEIGHT.  Adding on a higher seat and side bars was common. What wasn't common was any other bar or railing on the walls to assist with turning the body or allowing someone to stand and move "into" the opening of the high sided rails attached to the toilet seat. 

CONDITION.  Don't look too closely. No amount of scrubbing can get rid of all the built up residue and areas that are in need of constant repair but should be replaced. How long ago was that toilet replaced? 

CLEANLINESS.  We scrubbed Mom's many a time. We'd ask and it was another one of those "housekeeping has to do it and they're busy somewhere and will be here as soon as possible". Meanwhile, Mom has to go or her roommate had to go and that wasn't going to happen on our watch with "remnants and remainders" contaminating the seat and surround.

TOILET TISSUE HOLDER: Two. Sounds great, right? Inevitably the closest one would be empty and the other one would be just far enough away that a resident had to lean forward (you guessed it, causing them to possibly get off balance and fall forward and onto the floor).

Paper the quality of writing paper. Seniors are known for having hemorrhoids and this aggravates and irritates and causes bleeding and infection. BUT, THAT'S TO BE EXPECTED, RIGHT? Those irritations and infections? NO.

CALL LIGHT.  If you're lucky, someone has attached a string that stretches horizontally and within reach of the toilet. If not, no string and the "light switch" is too far to reach, again, without putting yourself way off balance and falling. 

No matter how soon you put the light on, inevitably, due to the lack of adequate numbers of Aides on duty, you'll wait at least 10 -15 minutes or longer. You'll "tell yourself" you can take care of this "basic need" and before long, another FALL happens and it's onto a hard, unforgiving floor capable of causing cuts and bruises and breaks.

WASH BASIN.  No adjustment here for anyone in a wheelchair. Installed at a height for someone standing, anyone in a wheelchair has to try to move it at an angle (remember, the waste can is right beside you and you have Dementia, so, it's really fun to try to figure out). Washing your hands is challenging because the spigot isn't very long and the handles for the hot and cold water -- two separate handles -- are quite a stretch and you have to lean forward when there's little space to accomplish this "acrobatic feat".

SOAP DISPENSER.  Located high on the wall, to the side and on the back wall with no room to get to it by moving your walker or chair. Again, it's leaning and a possible fall. But, who takes notice? 

They find you on the floor and it's never noted the challenge with the design and layout of the bathroom is the contributor to the accident. .

THE MIRROR. Someone did think to put it on a slant but obviously didn't sit in a wheelchair while determining the slant as it barely lets you see the top of your forehead, not your entire face and front of your body. 

THE MIRRORED STORAGE CABINET WITH TWO COMPARTMENTS SIDE BY SIDE located to your right as you sit in front of the wash basin.

The only place you can store your toothbrush, toothpaste, denture cleaner, deodorant, etc. UNLESS... like we did, we gave Mom a three drawer plastic unit that went between the toilet and the wash basin. ONLY ONE COULD BE ACCOMMODATED IN THE SPACE SO, FIRST COME, FIRST SERVED and the other person, no matter what their limitations, had to "make do". 

However . . .   this cabinet was also at a height to accommodate someone who could stand. The small and difficult to "grasp" with arthritis mini knobs are challenging to get your fingers on and the glass shelves provide an accident just waiting to happen. 

NOW, CONSIDER THIS.  

Each side is labeled according to the bed location: "A" and "B". No name, just that. WE'RE DEALING WITH PEOPLE WHO HAVE DEMENTIA!  We're dealing with people "sharing" items they should not have to share but because the facility is old, outmoded and totally unsafe, it's what there is to use. We're dealing with someone "using" another person's toothbrush or even dentures simply because there's no real separation of place that someone with advancing Dementia can always adjust to. And people with Dementia can't always determine what's "theirs" and what belongs to someone else.

THE CLOSET -- a fixed bar far too high for anyone in a wheelchair to reach without the possibility of getting off balance and falling. Mom tried using a hanger to pull her clothing down. She wanted to be "independent" and to at least get her clothing but what usually happened was more on the floor inside the closet and outside and when she did try to reach for them -- another fall. Of course, the facility didn't tell us that was how it happened; while Mom was still able, she could tell us.

Accordian style doors. A shelf up high and a floor down below. It was up to the resident to make any "adjustments" or "additions" and most don't have the money, the ability or the family for this. Try to get your shoes off the floor underneath a rack of clothes from a wheelchair or balancing with a walker. 

THE DESK complete with chair without side arms. Show me, please, someone in these facilities capable of using this type of chair. 

When Mom lived with us, as Mom's balance and range of motion/movement declined and became challenging, we made sure wherever we went, and especially when looking for Adult Day Care, there were chairs with not too soft seats and definitely had usable side arms for pushing down on and aiding in lifting a body up.

THE CHEST OF DRAWERS -- inexpensive when first purchased, now definitely showing age and wear although not falling apart as in some facilities, drawers aren't "locked in" and can fall out if pulled out too far.

THE BED -- dare you to try to sleep on the mattress that's thin, hard and made out of material, along with the pillows, that takes some time go get used to using for the purpose of sleep. 

NO WAY TO ADJUST THE BED'S HEIGHT by raising or lowering by the patient -- whoops! "resident". 

Yes, that's right, these beds residents lay on night after night are "hospital type" beds. How quickly did you want out of "that type" of bed when hospitalized. Think about spending years there.

Mom had a fracture in her neck and laying in the bed was very painful; she slept every night in the chair we brought from home, the chair we'd bought for her (the one I insisted she have several years before, yes, me the "abusive" daughter called so by the "new friend', Julia, who really provided nothing but took everything she could from Mom and from us).

THE CALL LIGHT  The mandated light supposed to be connected to the wall and connected to the system that alerts the Nurses and the Aides to a resident's need for attention. IT'S ALWAYS SUPPOSED TO BE WITHIN REACH.  We often found it detached and laying in a circular pattern on the bed. Now, Mom couldn't remove it because of how it was attached to the wall and where it was attached. But there it was, disconnected and obviously useless in time of need.

THE TELEPHONE You have to remember to dial "9" to get an outside line. Try that one on someone who has Dementia! It has the numbers to press but it's an older model phone and there are no adjustments to turn up the volume (something really needed by most residents who suffer some form of hearing loss). The numbers are way too small but you're supposed to be able to locate them by "memory" -- again, fun for someone with Dementia. You can supply your own, of course.

THE WALLS  -- Any space to hang or display besides just plain old open wall space? Most probably this "unit" is bare bones. The resident can "display" what they'd like but there's nothing to accommodate any display of anything. And, because most rooms have the furnishings (low level dresser and desk) two pieces for each room resident, along one wall, it's a challenge to keep "your" things separate from "the other persons'".

LOCKED DRAWER OR SAFE?  Not in "average" units. Everything is out there and "up for grabs" and with many advanced Dementia patients, chances are things will "walk" and may never reappear.

FALLS ARE INCREASING. RESIDENTS ARE BEING BLAMED. When you point a finger in one direction there are four pointing back at you. FACILITY OPERATORS TAKE NOTE!