Thursday, October 29, 2015

Cultural Differences or Economic Necessity?

Driving home today I heard a comment on NPR from a listener about care giving for older generations as a "part of their culture" and how they would never "institutionalize" a family member.

I followed that practice. It was never my intent to "institutionalize" my Mom. And she'd told me from a very early age how she didn't want to be put into a "home" until she didn't know anything or anyone around her.

Sadly, she and we didn't understand the "faces" of Lewy Body Dementia and how the executive skill sets -- the ability to reason and rationalize -- can be manipulated and controlled by someone aware of the vulnerabilities of men and women with this disease using Undue Influence.

We're living in a time when aging is becoming the norm. Many diseases have been eradicated or controlled and the most challenging are somewhat manageable -- cancer, heart problems, MS.

There remain a few diseases in our privileged society that remain severe challenges for those who suffer and those who walk along side them daily -- ALS, for one. However, as advances in genetics and research conquer new frontiers, we become a nation of more possibilities for greater health and greater longevity.

However, we continue to change. Lifestyles become far different from previous generations. Active lifestyles need to be created, no longer mandated by working.

Individuals and families in today's USA do not generally live a sustainable lifestyle where the "sweat of their brow" doing daily work produces food for the table or clothing as bare minimums.

Governments and idealistic practices aside, take a look at emerging countries and islands set in a time when cars needed to be shifted to change gears and people repaired rather than replaced.

However, today, for most, daily living is a high cost and work means going outside the home often at minimal wage and long hours, often at the mercy of the employer who practices "part time" assignments with full time workloads.

Work is physically and emotionally taxing and trying for many and even those who've "made it" are torn by the stresses of coping with an ever lengthening and expanding work versus "play" or "leisure" time.

I've walked that path and continue seeing a long stretch of it in front of me as I try, just as I did so many years ago, to move ahead, gain a little more, provide and produce.

Our lives, daughter's and mine, are a little better. We went through times when every penny, every item we needed, not wanted, was a major decision as to how long we could "do without" and "make do".  

We still struggle but have a little time and a little money we can call "extra" to buy a few things -- not like we see advertised everywhere but at least we can replace some necessary clothing items and do a few repairs we've had to set aside for so long.

Mom taught me to make do; she taught me to remake and reuse. These skillsets were a necessity as we made our way through caregiving for her and my husband. 

I see friends and relatives who have had challenges but they've also had health insurance that totally or mostly covered their major events. But then, none of them endured quite the long term stay we did -- 100 days -- when you max out all the resources and the bills keep piling up because "health" has not returned, does not return and more problems occur.

We rarely see behind the curtain of extensive health care problems. 

When we're given a glimpse through fund raisers or through TV commercials asking for support, we're shown the positives, the possibilities, and never behind the doors of the families and what they struggle with to make it through every day. 

There was a day when Americans married very young 15 - 18. There are still societies where this is a practice and we "more enlightened" societies work to "protect" young women from this life of hardship. It wasn't considered to be that by our society; it was simply a norm; a practice; the way life happened.

My mother didn't marry until she was past 30 -- she was a "spinster", in the language of the day. Most friend and family members had several children by the time she had her first; most of my cousins were either quite a bit younger than I was or quite a bit older.

Those were the days when family almost always took care of their own. Children, of whom there were often more than a half dozen, took in their aging parents. 

Then came the days of the "single family household" when a family was considered to be the father, mother and child/children and anyone else was looked at as a "freeloader" or someone who "couldn't make it on their own".

It hasn't been that long we've actually had "places" where our aged population "were placed" to spend "the end of their days".

Click through to gain historical insights into Aging in America and the "system" of Long Term Care for our older population through this portal 

Are we really so much better off without the wisdom of our older generation readily available?

Do we really believe we harm one another or each other by having an extended family unit?

Or is that how our society in the United States focuses with so much for so many for so long that we forget the basis of the family is the family, in all its shapes and sizes, all it's inclusions and not exclusions.

We're not different, you and I, or differentiated by where on this earth we live. We're only as different as we create our societies to be and as similar as we allow them. 

Perhaps we should learn the lesson of the ages -- not everything that's "old" is disposable, unusable and irrelevant.

Many of life's greatest creations are the most valuable because of the value we place upon them.

Where are you in your journey of life's values?

Friday, October 23, 2015

Come Immediately, Your Loved One Is Dying

The message can be unexpected and delivered quickly.

For me, the LPN, the Head Nurse on Mom's floor, called and wasn't looking for a conversation, wasn't looking to provide information. Direct and to the point.

Shock and awe. Unexpected in its announcement.

We'd missed visiting Mom for a few days; horrible winter storm; car was out of commission; temperatures dipped so low our old tires couldn't take it so we had four flats. 

AAA told us it would be at least 24 hours and possibly 48 hours before they could come.

Once again we felt the heavy weights of life pressing down faced with not knowing what to do, where to turn. 

Family?  None around. Friends? Since husband's death those numbers had dwindled.

Just what we didn't need -- replacing four tires when we'd just built up a small emergency fund. Oh, well, this was an emergency; it's just that eliminating that "safety net" pulled yet another small security away and out from under creating more stress and concern.

Daughter and I passed the LPN who had called us on the phone as we walked into the facility. She was walking out, leaving for the day. 

We thought she would stop, talk with us and help us through this difficult time. 

We thought someone would approach us, meet with us, go over Mom's condition, their observations and above all, a Dr's report generating this call to come, of imminent death. 

She paused when we called to her. She said very little, only responding to our approach and restating how Mom's time had come and it was good we were there.

She didn't take time or get anyone to go with us, to explain to us what had happened, what was going on, what to expect or what could be done.

In the hospital, when my husband's death was imminent, we had compassionate, caring conversations with a Doctor who attended him. Why should this be so different, this "medical facility" just a step down from a hospital. 

Why do we accept having Long Term Care, residential facilities that are not mandated by law to provide educated and trained personnel round the clock who have training in communicating with residents and those directly in their lives -- and deaths?

Death doesn't come by appointment or any specific scheduled time just as falls, infections, cuts, urinary tract infections do not arrive or happen "on a specific schedule of 8 AM to 5 PM" which Missouri State Law currently requires an RN to be on premises.

I felt as though Mom was here today, gone tomorrow and someone else would replace her -- in her room, her bed, the space she "occupied" for what to me was so short a time compared to all the years we'd spent together.
We weren't thinking clearly. 

We expected to be taken to the Hospice Room where we saw others go during "the last days".

Not for us, I guess, because we "refused" to allow the facility to use their "in house" Hospice; we wanted to bring in a local very well known Hospital's Hospice Service. Denied. Not allowed. No one except theirs or no hospice.

Isn't Hospice a level of medical care? 

How can any Long Term Care Service deny medical care and not be severely fined by the State of Missouri? By the Federal Government? By Medicare? By Medicaid?

We were once again facing end of life with a close family member and our first response was to get to her as soon as possible.

Imagine our surprise when we arrived and Mom was in a public area. Not in her room. Not exhibiting any signs we thought we would see as "End of Life".

Among so many others -- being watched as a group by staff sitting behind a counter, talking about whatever interested them, occasionally answering a phone call or a question from a passer by. 

Maybe writing a few notes in a book or on a form and "seeming" to be working while obviously taking their time and making this activity last as long as possible to perhaps avoid another chore, one less desirable.

Mom was in the on floor dining/"holding" area in the Gerri chair that had become her place outside of the bed in the last couple of weeks -- where we'd found her several times before the weather became so difficult.

Mom's lift/recline chair had stopped being able to be used because it was in a reclining position and couldn't be moved -- the facility promised to have it fixed before we left but of course, no one did and no "substitute" was ordered for her even though this was her "bed" and this was the most comfortable place and one she wanted to be in.

We tried to get a report from the floor nurse(s). No one seemed to know anything.

I asked them for Mom's daily report. They didn't seem to know what I was asking for and said we could talk to the facility RN, the one mandated by the State to be "on premises" during "regular daily business hours -- 8 to 5".

We waited about 20 to 30 minutes. She'd left for the day.

We asked for someone, anyone who could brief us as to what was going on, why they believed Mom was in the process of immediately dying.

No one came.

We asked about what "signs" they had about Mom's passing as we were seeing the same person and the same low level of ability but not what we thought we'd see: visual signs with labored breathing, unconscious, perhaps, or some other visual "clue" life was ending. 

We observed nothing different from previous visits.

Mom was in a public area . . .  in a Gerry chair with her legs hanging over . . . and a poorly wrapped area on her leg . . . where we'd seen cuts from the unprotected sharp metal edges on the chair we'd drawn to the attention of the staff the last time we visited -- and, of course, had not been taken care of.

One of the LPN's suggested we move Mom into her bed "where she'd be more comfortable".

Once again, we'd drawn attention to what we considered to be neglect on the part of the facility. That seemed to be the trigger to move Mom into "her room"; 
the room she'd shared with a lady who was unconscious most of the time, we believed because she was a challenge when she was awake. 

Of course, HIPPA prevented our knowing the truth and since the woman was never visited by family while we were there (and we'd been visiting every day for several months), there was no one to talk to about any concerns for the woman's safety.


Yes, this could be called a "short time" to go through the process of dying but we weren't sure it hadn't been an additional four days we hadn't been able to come plus the four days we shared with Mom.

Honestly? We weren't sure Mom hadn't simply not been fed or given liquids for several days and there was nothing in any orders or requests she'd made for this type of "denial" or "elimination" -- especially without a Dr's review of Mom's medical condition and advisory to us, her POA's and her designated Medical Power of Attorneys.

Mom wasn't offered any water or food while we were there.
There was no mention of her not being able to swallow or of concerns for her choking or the need to place her on IV or a feeding tube. 

Did she "refuse" food?  There was none to refuse. 

I finally had a call placed to the Dr and the "staff" brought in a tray with plates of food -- food like you and I would eat, a regular menu. 

No soft or pureed foods. No liquids only. 

We saw it as a "slap in the face" to us; as if we were so "incompetent" to believe she could eat at all and providing this "full meal" was their way of saying, "See, we told you, she won't eat."

Death comes in so many ways and when we witness the death of an older person in a long term care facility, are we witnessing a "death" or are we witnessing the affects of neglect and/or abuse?

Our thoughts return to our own experiences and frequent observations before this time of vigil: the person assigned to assist Mom or even to try to feed her busy with conversations with other workers, have four or more people to feed and therefore couldn't keep track of who had what and when .... or.....what?

Heard on NPR today that when someone is dying, they often don't eat.
 Yes, and in LTC's, individuals with Dementia often refuse many services because of their mental inabilties and incapacities.  

Does that mean a facility can simply ignore the person and their family? Ignore the family's need for consultation and qualified medical conversations?

Who determines when someone is dying in a Long Term Care Facility?  

More importantly, who's in charge? 

The LPN's, the single RN on duty during business hours? 

They're the ones who make the decisions concerning when the Dr is called and for what reasons. 

Only when we finally made contact, finally demanded the Dr be contacted and spoke directly with her did we learn there was  no order to deny food or water and she knew of no reason why this should be withheld. 

The biggest surprise was the Dr had not been contacted by the facility about the "imminent death" observed by the LPN who called us or anyone else.

Mom wasn't even being given an application of a wet cloth to her lips, her face, her hands.  There was not attempt to provide a bed bathing. There was no compassion. There was no human touch unless we asked to a temperature to be taken or her heartbeat listened to.

We had to ask for care giving -- turning her, propping her up on one side and then another. 

Guess they decided there would be no "end of life care" whatsoever. Guess that wasn't their "responsibility"?

It was as though they felt their "job" had ended with what they determined Mom's death was "imminent".  

Oh, they brought in a rolling cart for us with some beverages and nutrition bars and other things. I thought how cruel to have this in sight of Mom but not offer any communication, any touch, any small portion of human kindness.

This "neglect" went on until Mom's final day when a male LPN, who had showed great compassion and concern for Mom, returned to duty and was "assigned" to Mom's room. 

A reprieve.  Someone who would talk with us and who worked with us to make what became Mom's final hours more tolerable for her and for us.

Why didn't we receive a medical doctor's evaluation during these days we spent with Mom trying to cope, trying to sleep,
daughter on the floor and I crawling into the non movable lift chair in its continual reclining position -- difficult to get into and really difficult to get out of and miserable to sleep in?

Advice from those who've walked and grieved alongside a loved one:

If you wonder why your loved one gets sick so much, wonder about the food they eat, the real quality and quantity. 

Don't take it for granted what you see on "special" visitation days in meals is what's always served. The facility is on display; they'll do their best and present their best.

Take note of "changes". Watch for those provisions like food on the floor in refrigerators and pantrys being reduced or eliminated. Missouri State Law requires offering snacks on a regular basis but it was only during and for a short time after the "inspections" Mom's facility followed those mandates.

Our Voices Are Raised -- Raise Yours

It's time we had a list, a readable checklist, of the State provisions for quality care of residents in Long Term Care Facilities. 

Detailed, inclusive, clear and concise language. 

A list we could access and take with us as a checklist to ensure the laws, the rules, the regulations are being adhered to for the safety of our loved ones and ensuring their quality of life is maintained and sustained.

Explicit and detailed. Give us the facts. Give us the right to a life of dignity to the very end.

Tuesday, October 13, 2015

Numeroglogy: Aging By The Numbers

YOU are #1 in managing Long Term Care and care giving in residential facilities. 

YOU can make a difference.

Statistics taken from the St Louis, Missouri area of the Ombudsman organization, aka VOYCE .
"The long-term care industry has grown rapidly in the past decade due to growing demand generated by our aging population. This demand will only increase as we live longer and more individuals reach the age where they will be more likely to require some type of long-term care.
Looking at the Numbers
"70% of people turning age 65 can expect to use some form of long-term care during their lives. (U.S. Dept. of Health & Human Services)

"Baby boomers started to turn 65 years old in 2011.
"The number of older people will increase dramatically in the period from 2010 to 2030. 

"By 2030, the older population is projected to be twice as large as it was in 2000 – growing from 35 million to 71.5 million people. (2009 Long Term Care Insurance Sourcebook, American Association for Long-Term Care Insurance)

"The population 65 years and older is increasing as a percent of total population. 

"Of the older population with long-term care needs, about 30% have substantial long-term care needs. 

"Of these, about 25% are 85 and older, and 70% report they are in fair to poor health. (Long-term Care: Medicaid's role and challenges, Publication #2172, The Henry J. Kaiser Foundation)

"40% of the older population with long-term care needs are poor or near poor (with incomes below 150% of the federal poverty level). (Long-Term Care: Medicaid's role and challenges, Publication #2172, The Henry J. Kaiser Foundation)

"There are over 44 million caregivers, or one out of every five households, involved in caregiving to persons 18 years of age or older. 34 million caregivers provide care to someone 50 years of age or older. (Caregiving in the U.S., National Alliance for Caregiving and AARP)

"By 2050, the number of individuals using paid long-term care services in any setting – at home, residential care such as assisted living, or skilled nursing facilities – will likely double to 27 million people from the 13 million who were using long-term care services in 2000. 

"This estimate is influenced by growth in the population of older people in need of care. (The future supply of long-term care workers in relation to the aging baby boom generation: Report to Congress, U.S. Department of Health and Human Services and U.S. Department of Labor)"

In Summary:  Most people want to live longer. Medical Care, Genetic Testing and other advancements are focused on providing a better quality of life, eradication or lessening of diseases or their effects and generally increasing longevity.

However, life happens. Accidents happen. Diseases for which we have no cure and those that are "orphans" -- where research is underfunded or symptoms are not recognized -- will continue to be plagues on world societies and affect care giving for all ages, including but not limited to the advanced in age.

Long Term Care facilities are places where men and women who need constant medical care are housed and they cannot, due to physical limitations, move independently or maneuver without assistance in case of an emergency.

For their sakes and the well being of everyone in Long Term Care facilites, there are actions needed to protect and defend these individuals.

YOU are the first line of defense.

YOU are the voice of those who cannot be heard.

YOU are moving daily, no matter your age as a Millennial or Baby Boomer, into that current darkness, that current hidden and seldom spoken about world of Long Term Care Facilities.

YOU hold the keys of knowledge and the ability to speak out about those places where people receive less than quality care, are treated as less than individuals and whose quality of life is managed and hidden in its inadequacies and inabilities through carefully managed reporting and occasional cover up with appearances far above the every day. 

Make a friend in a facility. If only to attend a "public event" and get to know someone who you include in your very busy life. 

Their life is a life of waiting, of hoping and of needing connectivity with the REAL WORLD, the world beyond their limitations within the walls, sometimes the grounds or areas just outside the walls. 

Many residents have no immediate families nearby.

Many residents wait day after day hoping someone in their family can take the time or find the time to visit.

Volunteering or simply finding a reason -- donating craft supplies, teaching a class of some kind, playing a musical instrument -- these small gifts of time make Aging By The Numbers a time in life to look forward to and give meaning to many who place a value on your time even higher than you do.

Wednesday, October 7, 2015

The Privilege of Standing At Death's Door With A Loved One

That most challenging of times standing at what I finally realized was my husband's death bed, assuring him daughter and I would be all right, we'd make it. 

It wasn't my first time to attend a family member who was dying. I'd taken steps to ease the transition for my husband's Aunt when she was passing several years ago. 

Much younger then, I'd agreed to be her Durable Power of Attorney for Health Care. 

She felt her husband, with physical limitations himself, could not and would not be able to help her or make decisions when the time came. I suggested others in the family but she said she felt I would make the decisions she really wanted.

That was a very difficult life experience. Not when she originally made the decision, but when it actually became a reality, a responsibility. 

It prepared me in some small way for facing this time, this unwelcome time, walking alongside my husband as far as I could in his end of life journey.

You see, she was Catholic. He was not. She'd been married before and I believe he had also. She wanted Last Rites. She knew he would object. 

It was her death, her needs and her wants I believed were more important. I brought her a Priest. A family friend, older and compassionate, someone I felt would help her transition and ease her journey.

When she passed, her husband ignored me at the wake and funeral and didn't speak to me for six years. 

However, he remarried within six months of her death.

I know I did the right thing. He did what was best for him; I did what was best for her. That was the responsibility my husband's Aunt gave me. 

She was wise in this decision realizing choosing anyone directly in the family "line" would be even harder for them. She knew my husband; she knew me. She knew we both could weather the "storm" that would occur. She was right.

Facing and walking a journey alongside my husband was even more challenging but still a privilege to be with him before we parted in this life.

Before this moment in time, this unwanted, unwelcome life experience, being told the hospital had tried to turn down the respirator but he couldn't tolerate the reduction. 

Memories of being told his body systems were closing down, asked to make decisions, knowing his beliefs but still challenged by making that final, non returnable decision to remove the equipment.

No matter what I knew, believed or thought, I couldn't make the decision alone. I turned to my daughter, I turned to my sons, yes, even the oldest who has been a major life challenge, still our family.

I'd called the youngest and told him what daughter and I had been told and I didn't know how long we'd have their father with us but it didn't appear the time would be long.

Both sons decided to come immediately, to be with him, to be told first hand. One was across the country on business and the other on the opposite side of the country where they both lived.

I'd walked this road before. I wanted each of us to speak directly with the medical advisors, ensure there would be no surprises; no misunderstandings. 

Each would know, each would have time to question, to agree or object to any and all decisions.

Considering oldest son's actions had not been positive and he'd even stopped communicating with his father and me I still felt some unity, some semblance of what we had before so much changed and so many decisions made causing separation and loss of real communication.

Our oldest son also had a very negative telephone conversation with his father that caused great hurt and stress just hours before my husband went from sitting up in a chair to being placed into what would be the start of his final journey.

I watched my weak and struggling husband cope with the hurt and pain of that call.

Opening our hearts was difficult but he was, after all, family, our son, our first born, the beginning of our truly being a "family".

I didn't want to make any decisions; I wanted them made for me but life doesn't always travel the road the direction we want it to go.

Standing there, watching him leave us, not wanting him to go while realizing there was nothing left to do, nothing but release him from the struggles and the fighting with his body's final struggle. Sustaining "life" through equipment that breathed for him was not what he wanted even if we did.

But life doesn't end right away when equipment is removed even when Dr's assure you the body is "shutting down" and major life systems are failing, one after another.

We should have been better prepared for this event; this watch and wait while life leaves the body and the person you love moves away, never to return to your side in this life.

That's not the portrayal of dying and death we usually see -- it can be what seems like a much slower progression.

Birth and death. Happiness in the first, sadness in the last.

Death is a process that's many faceted just as it is for life and living.

We understand more today about how disease, accident and medical conditions can progress -- to some degree. We're still "hiding" -- to some degree-- the possibilities of end of life.

Is that why for so long I felt guilty? Wondering if and what I did and said was right, for the best -- all those second guessing and "what if's" many survivors go through?

Is it because this journey was not expected; was believed to have been "advanced" by decisions made by those who should have known better, done more and taken more time to instruct, guide and provide -- within the medical profession.

Whatever the process . . . however it came about . . . 

Living and dying is a journey of complexities in our society.