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.

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.

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

Facility Deaths Seldom Investigated

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.  

The Dr didn’t bother to “drop by” just to check on one of her patients? 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.