Category Archives: Personal Experiences

Ideas to Inspire!

  By lonp | March 6, 2013 - 6:13 pm |
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ALentertainmentby: Denise B. Scott – nursing home and assisted living administrator; coach & mentor to care organizations

For some reason, many leaders in healthcare like to equate stuff in their lobby to person-centered care: player pianos, coffee for visitors, seating areas with plants.  Leaders that were eager to tell me about how they are “doing” culture change have proudly presented each of these examples to me – Pathetic.

The greatest pianist, coffee or seating does not make up for the fact that most healthcare organizations deprive people of their dignity and individuality.

Extreme? Perhaps. True? Absolutely.

The idea of person-centered care is not new.  It has a long history in various levels of healthcare. Yet somehow the concept of person-centered care still struggles for the respect that clinical outcomes, quality measures and financial results get.

But is what a person wants any less important than what a person needs?

Don Berwick, former CMS Administrator, describes himself as an extremist in his article on patient-centered. It is one of the best articles I have read on the subject.  In it, Berwick addresses common objections that I often see.

One objection is, “What do we do if a person wants something crazy or foolish? In a training seminar that I recently conducted, a staff member asked, “Do people just get anything they want now?”

The answer is “Yes!”

On rare occasions a “No” may be necessary.  BUT we shouldn’t make blanket policies that affect everyone based on one situation.

As Berwick writes, “…rare occasions make for very bad rules for the usual occasions.”  He also addresses the fear that person-centered care will have a draining effect on staff members.

Take Action: Person-centered care goes beyond customer service and aesthetics. It asks, “What do you need and want?” It acts on the answer and then asks, “How could I do better?”

Inspire: Berwick shares some ways to bring patient-centered care alive:

Control – Give control over to patients, residents, and the loved ones they choose. Take over control rarely and only with permission.

Transparency – Share outcomes, processes, and errors freely. Apologize when things go wrong.

Individualization and customization – While the environment is important, the focus of culture change should be on creating systems that are adaptable to individuals.

Training – All staff should be equipped with the skills they need to support residents’ needs and wants.

What do YOU think? Is coffee in the lobby enough or should you say “yes” to everything a resident wants? Is the answer somewhere in the middle or is that a slippery slope back to mediocrity?  Tell me here!  

Extremely thankful for you reading, Denise

The Great Bridge

  By lonp | December 3, 2012 - 6:50 pm |
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by:  Martin Bayne – Journalist, Buddhist monk, MIT graduate, and well-known advocate for the aging; cofounder & CEO of New York Long-Term Care Brokers, one of the nation’s largest LTC insurance brokers, Martin developed Parkinsons disease at the height of his career and has spent more than a decade energetically advocating from a wheelchair while personally experiencing life in LTC facilities.  He knows whereof he speaks.

We call the bridge between birth and death “aging.”

In it’s ascendancy, we are “young” even though our 10 trillion youthful cells have already started losing DNA telomere base pairs each time they divide.

If we survive youth, our aging cells become senescent and start to die. We call this “growing old”.

We are the only species that attempts to manipulate this natural cycle. (Ever see a  toothless lion in the wild?)

Because of our aversion to death, we prolong or “stretch out” this aging cycle, but the mind and body have no blueprint for these extra years, and without an instruction set, we simply create more hospice, skilled nursing, and assisted living beds.

What is the answer? In my lifetime, man has discovered DNA and mapped the human genome, rocketed to the moon and back, invented the transistor and created ambitious machines the size of small cities to explore sub-atomic particles. Yet, elder care remains stuck in the nineteenth century:  we still throw the confused, demented and disabled in “facilities” hoping God will sort it out.

Solving the aging dilemma is like nailing Jello to a tree. In truth, despite what the country’s most astute geriatricians, erudite scholars, and faceless Internet experts will tell you, there is very little one can do for an 82 year old woman with Alzheimer’s, a frail, 97-year old man in protracted renal failure, or a 62-year-old journalist with 19 years of Parkinson’s under his belt.

I know.

Learning Compassion for Dementia Patients

  By lonp | August 15, 2012 - 2:13 pm |
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by:  John L. Roberts, JD; Member of the Board of Directors, Mass. chapter of the Nat’l Academy of Elder Law Attys.

In July, I took a ten minute Virtual Dementia Tour that opened my mind and heart to the emotions that might be experienced by a person who has diminished capacity.  The tour was provided by the staff at Keystone Woods Assisted Living in Springfield.

Have you have ever taken a guided tour that provides a cassette tape, illustrated book, or a live tour guide who directs your attention and helps you understand a new or unfamiliar place?  The dementia tour is just the opposite. (more…)

The dementia tour used props and devices that made it difficult or impossible for me to walk and do simple tasks.

The tour began as the tour guide placed headphones over my ears.  I did not hear the clear and confident voice of a tour guide. Instead, the headphones played distracting bits of conversations, sirens and noises, to simulate the mental confusion that goes with inability to process and sort out sounds and voices.

To simulate macular degeneration and loss of vision, my eyes were covered with yellow tinted goggles that had a solid black focal point that obscured the center of my field of vision.

The tour guide had me take off my shoes and insert plastic sheets with prickly spokes, to simulate neuropathy and loss of feeling in me feet.

The tour guide put thick plastic gloves with bumpy spikes on both of my hands, taking away my sense of touch, and any dexterity that I may have had.

These artificial impairments set me up for the indignity of dementia, and the very serious emotions that a person with diminished capacity has to deal with every day:

CONSTANT IRRITATION: I felt annoyed that my hearing and vision was being interfered with.  Why couldn’t I see the full field of vision? What little I could see was obscured through a yellow filmy haze. But this was only the beginning.

ANGER: The tour guide gave me quick instructions of what I was supposed to do next: fold up a pair of socks, straighten up my dinner plate, brush my teeth, and several other tasks that I couldn’t hear through the cacophony that was pouring into my head from the earphones.  Why wouldn’t she speak more clearly?  I asked her to repeat the instructions, but she was too busy, and sent me into the assisted living room to begin my day.

FEAR: I can only imagine the panic I would be feeling if this demonstration was the real thing.  Someone who should know and understand my needs has just taken ten seconds telling me what to do, and pushed me away.

FRUSTRATION: I fumbled with the pair of socks, and tried to remember what tasks the tour guide told me to do.  How am I supposed to get through this if no one will help me?  There is a sitter in the room, watching me to make sure that I don’t trip and fall and hurt myself.  I ask her to help me remember what to do next.  Without looking up from whatever she is reading, she just tells me “do the best you can.”

SADNESS: I know I could do some of the tasks, if only someone would prompt me, or give me just a little bit of time or attention.  But no one does.  I am alone in this semi darkness.

After 5 or 10 minutes of futility, the tour is over.  I have a small understanding of the emotions experienced by the person with dementia, and a much greater understanding of the importance of our responses to the need for care. The Virtual Dementia Tour helps people learn the  importance of a positive environment for those with dementia, and is explained  as: “Your Window Into Their World.”

Joanne Koenig Coste wrote about need for this understanding in Learning to Speak Alzheimer’s.       The Alzheimer’s Association has a booklet on activities at home that explains how to approach the person with diminished capacity.        Psychologists and other experts have explained how to avoid the need for antipsychotic drugs that are often prescribed when the frustration, fear and sadness leads to erratic behavior.

Alzheimer’s – a One-way Time Machine

  By lonp | June 22, 2012 - 10:15 am | ,
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by: Lon Pinkowitz, EVP FuturAge Consultants; Advisor to CCAL

Having been a caring witness to the long goodbye that is Alzheimer’s, that eventually ended the lives of my father and mother-in-law, I know well the ravages it wrought to their minds and bodies.  Watching the devolution of a life is a painful process, but if one pays attention there is an opportunity to discover the essence of a loved one, as the carefully crafted layers of a life history begin to peel away.  It is a time machine of sorts, one that can offer an opportunity to better view the unencumbered core around which their life was built. (more…)

Over the last five years of my father’s ten-year journey, his life as an electrical engineer vanished and soon he and I, no longer remembered as his son, but rather a friend he had come to know,  shared his vivid experiences during WWII.  This emotionally charged part of his life had deeply etched memories.  I got to know him as he recounted the good and bad of those experiences, as well as his relationships with fellow soldiers/friends who were now back among the living.

As time passed, WWII slipped into oblivion, and my father revisited teenage years; years replete with the newly reconstructed reality of his core as an artist.  He shared with me that he, his brother and father had been together just the day before.  He confided in me that this resort hotel (an Alzheimer’s home to those not privileged to share his vision) was a favorite place that they liked to go to relax.  He happily recounted what they had done, giving me insights into feelings he had that I would never had known had we not traveled together, raconteur and avid listener.

Unrelentingly, Alzheimer’s deconstructed his body as well, eventually stealing the ability to communicate, his control over bodily functions and his auto-immune system, all of which required a skilled nursing facility for the last 10 months of his life.

Although the journey was emotionally wrenching, I appreciate having had the opportunity to discover the essence and building blocks of the wonderful person that was my father.

Living with Dementia

  By lonp | May 16, 2012 - 11:43 am | ,
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by: Richard Taylor, PhD – Author, Alzheimers from the Inside Out, Richard’s experiences and people’s reactions to his eight years living with symptoms of dementia.

In the eyes of many others, sometimes even the eyes of care-partners, I am seen as less than a complete someone. Just because my memory sometimes fails me, just because my cognitive abilities some seem to slip, just because I don’t always think like you do, nor do I remember as much or how you do – (more…)

Please, please know that in my own eyes, and I hope your eyes, I am still a whole and complete someone. I am still me. I am still Grandpa, and Dad, a friend, and whole and a complete human Being. I am in my mind still and have always been a complete person.
I am not becoming any less a person simply because I cannot remember like you, talk as you do, or think as you do. I know many of you want me to be who I was yesterday, or last year, or the last time they saw me, but I cannot be.

I have ceased looking back over my shoulder at who I was, and now spend most of my time working on who I am , today!

From – Alzheimer’s from the Inside Out –
Health Professions Press, 2006
By Richard Taylor, Ph.D.

“I race up and down the corridors of my mind, frantically seeking to make sense of what’s going on around me. Sometimes this process makes me even more lost, and I become lost about why I am lost!

It is amazing to me to ponder the possibility of missing the ultimate unique moment of my life, my death, because I have no words to describe it, or understand it, or appreciate it.

Perhaps too much time is spent trying to answer and question each other, when what I really need is to feel like I am being heard. I know you don’t have all the answers. You also don’t have all the questions!

“Don’t worry if you don’t know all the answers,” says the examiner.
“Which ones is it okay for me to not know?” ask I.

How can I do this “right” in the morning and “wrong” in the afternoon? Why do I recall details no one else remembers and forget major points everyone knows?

Medication and the Elderly: Russian Roulette with Pills

  By lonp | March 15, 2012 - 9:15 pm | ,
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By Lon Pinkowitz, EVP FuturAge Consultants, Advisor CCAL

Medication errors are costly and often life-threatening.  More than one third of med errors in the US involve patients over 65 for myriad reasons beyond the easy leap to cognitive impairment.  Given the reality that elders are often taking at least six to eight medications to address their co-morbidities, the opportunities for medication errors are alarmingly high.

The following list, compiled from over a decade of involvement with aging parents, in-laws, and residents of independent and assisted living communities, though categorized with benign titles, can have serious – even deadly consequences.

The wheel-of-fortune method:  My Mother, who remained cognitively sharp until her death at 86, when in her mid 70s and living in Florida, consolidated her seven medications and my father’s nine prescriptions on an attractive lazy-susan storage tray in her kitchen cabinet.  My wife and I learned about this during our quarterly visit to Florida when my mother reminded my father that it was time to take his Aricept.  Yes, that sense of alarmed consternation you just felt duplicates our reaction to my mom asking a man with Alzheimer’s, albeit early stage, to spin the wheel-of-fortune, find his medication and self-medicate. After we all had an intense conversation about the dangers of this practice, my mother felt we were over-reacting, but agreed that she would at the very least separate his medications onto his own lazy-susan.  This began our campaign to have them move to New Jersey to an independent living community near us.

Efficiency trumps sensibility:  My father-in-law was living in an excellent assisted living community near us.  Although afflicted with Parkinson’s, he remained cognitively bright and analytical.  The assisted living offered medication management, which he insisted he did not need.  Given the additional expense involved with this service I opted to monitor his self medication by counting his pills every time we visited (4 times a week).  Every visit the pill counts were on track.  The pills he took three-times a day were diminishing in threes, as were the other medications based on their dosages.  One evening we received an emergency phone call that he had been taken by ambulance to the hospital displaying highly erratic vital signs.  Once he was stabilized I asked him if he had forgotten to take any of his medications that day.  He assured me that just as he always did, he took them all at lunch.  “But what about the pills you take at breakfast and dinner?” I asked.  He looked at me pityingly for having missed the obvious.  “I take all my pills once a day, at lunch; it’s so much more efficient.”  We started him on medication management the day he went home from the hospital.

Waste not want not:  Having lived through the great depression, our parents were very frugal, at times dangerously so.  If my mother received a new prescription, or a new dosage, she remained reluctant to throw out her old prescription.  “After all, it’s medicine, not poison; and medicine is expensive.”  You can see how this concept leads to emergency room visits. 

Self-reporting can lead to self destruction: People in general do not do a very good job of self-reporting medical symptoms, medications they take, and most often supplements they take. The elderly reside at the high end of this spectrum.  My mother, returning from a three-day sojourn to the hospital had been given a new prescription for a blood thinner, which I picked up at the local pharmacy.  Handing it to my mother I asked if the doctor had advised her to stop taking her daily aspirin dosage, as well as vitamin E.  She assured me he had not.  “Did you tell him you take them every day?” I inquired.  “He didn’t ask”, she explained.  I responded in as calm a voice as I could muster,”since they are both blood thinners, there is an excellent chance that you can hemorrhage; please call him.”  She did; he said don’t take them; we avoided a potential return trip to the emergency room.

This list could continue ad infinitum.  Rather, let’s consider how to diminish the opportunity for disaster.  If an elder is living at home, consider medication management devices, or if affordable, a home health care agency that can help with medication management.  If in an assisted living community, be sure to investigate their medication management services.  It may help preserve your loved one, and your sanity as well.

For the Love of Family: A Story of Hope and Triumph

  By lonp | March 7, 2012 - 6:25 am | ,
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by: Claudia S. Blumenstock, NHA, Pres. & CEO Copernicus, Inc.

What if you couldn’t enjoy the distinct pleasure of sharing a meal with your family? What if you couldn’t dine in a restaurant with friends, savoring sumptuous entrees, delectable desserts and engaging conversation? What if the wonderful way in which we consume food and drink was suddenly taken away? What would you do?

Last summer, my father suddenly discovered that he was unable to swallow without aspirating as evidenced by a severe case of pneumonia. He was told that immediately, he must stop consuming anything by mouth, and that a feeding tube would be inserted. He was told that there was the remote possibility that by performing a series of exercises, he might regain muscle strength, providing support to the mechanics of the valve that protects the lungs when swallowing. The outlook was bleak at best.

So, my family got to work. My dad was hospitalized for eight days, while a battery of tests were run to determine the cause of the problem. We relentlessly questioned every health professional, medical team and specialist. We took turns taking copious notes, spearheaded by my brother, e-mailing them to one another, and posing additional questions to his medical team. Then we planned and strategized how we would celebrate his 83rd birthday at home without food and drink.

Dad left the hospital on his birthday with no diagnosis, no answers and an array of exercises. He was remarkable, determined to regain his swallowing, working his exercises just as the Speech Therapist had instructed.  We decided to give him a wonderful celebration without food and drink and with abundant love. My son’s girlfriend made him paper cupcakes; colorful and with loving messages. My nieces and nephews put candles in the Jevity (nutritional formula) bottle which we lit in celebration. We were determined not to eat in front of him as to not make him uncomfortable. He firmly told us that this act created the discomfort and that we should all be around the table together. Being with us was the most important component of the meal for him.

We contacted my mother’s first cousin, head of Neurology at Drexel University College of Medicine and planned a trip for my dad to get the crucial answers to what was happening to him. Meanwhile, my parents’ 57th wedding anniversary was upon us. No dinner out which had been the custom for 56 years. What to do? As patrons of the arts in Rochester, the philharmonic had always been an enormous part of their lives. I contacted friends, musicians with the orchestra, and asked if we could make arrangements for a private musical celebration; a deviation and distraction from the food and an enriching experience for both of them.  On August 15, the first and second chair flutists arrived at their home with flowers, instruments and an hour of music and conversation. How wonderful it was and how completely involved were my parents; a perfect substitute for the usual celebration.

My mother vigilantly supported my father and my siblings and I took turns supporting my parents and their struggles; sisters traveling from the New York City area regularly to provide support and relief. Appointments and travel arrangements were made and my father was admitted to Drexel so that our cousin could evaluate him. He discovered a very unusual condition; a bone pressing against the nerve periodically which hampered his swallowing. Tests were repeated to assess dad’s swallowing and we discovered that his vigilance had paid off; muscle strength had improved, he could eat by mouth once again. Success!!

Today, dad is eating again and enjoying his favorite food; ice cream! Family love conquers all.

 

Lights! Camera! Action! Person-centered Living in All Its Glory

  By lonp | February 19, 2012 - 3:50 pm | ,
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Click on photo to view video.

200+ friends, family, staff, and residents of The Westmount Long-Term Care Residence in Kitchener, Ontario, got together for an afternoon of dancing for a video to be entered in a Chartwell Reit corporate video contest. Good luck y’all! As you can see, these people know how to have fun.

“Personally, I can’t wait to get old so I can live here”. – Ken Ogasawara, producer.

Special thanks to:

Dorothy (bike), Eric (trumpet), and Jim (parallel bars) for being the stars of the show.  Stella for being a great (impromptu) lead! Amie for her great energy and good cheer in pulling this whole thing together.”

Kudos to everyone involved in the making and posting of “The Westmount:  Flash Mob” on You Tube.

The Visit

  By lonp | August 30, 2011 - 8:27 pm | ,
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René Cantwell, advocated for her father after his stroke the night of the millennium and for the ten years that followed. After forming a Family Council in her father’s nursing home, Cantwell put her skills to use as she published the caregiver resource Families of Loved Ones (FOLO). FOLO, no longer in print continues to be available online at www.familiesoflovedones.com.

We all know those weeks that just sap all of your strength. Well, it was Saturday I had had a long week, and I was whipped. Maybe it was because I was acclimating to my typical schedule after an unprecedented week long vacation. Perhaps that dastardly thyroid was off again. After all, travel, weight fluctuation, eating too much fiber, the wind blowing in a different direction, almost anything could trigger an uncomfortable level change with the thyroid. Perhaps I was just bone tired, but going home to take a break was really not an option. (more…)

Why? On this day, just like every Saturday for the past ten years (unless there was an extraordinary exception) I knew that someone special was waiting for me. It was the same on Tuesday and Wednesday too.  I was obligated, but not in a bad way, more like the commitment a new mother feels to care for her infant. Three days each week were reserved for my visit with Dad. He set his clock by it, and so did I.

As a family, we had come together in crisis on many occasions. By the time Mom was 49, she had endured over 20 major surgeries, leukemia, heart and lung disease, kidney failure, throat cancer, and most devastating of all, neurological impairment that brought about a type of personality disorder and dementia that was as debilitating as it was devastating. Dad’s compassion and devotion to his soul mate, in the most difficult of times, was often the topic of conversation among family and strangers alike. My Dad, it was often said, was a saint.

There are many stories on how their lives became an accumulation of sorrow and hardship. Job loss, no insurance, loosing their home—they were no stranger to life’s challenges. But as long as they had each other, they were able to move on. As adult children, we worried. We helped and supported as we could, our distance from the epicenter of their lives allowed us to become marvelous critics.  Conversations between the siblings would often contain phrases such as enabler and denial, but mostly the tone of the dialogue was that of concern. Our worries were real; the toll that Mom’s care was taking on Dad was measurable. He already had open-heart surgery, he was diabetic, and at 69, still had to find work in order to make ends meet.

On the night of the millennium, when most were celebrating a new era and worrying about Y2K, the family was about to learn how our worst fears were materializing.  A quick visit for the New Year revealed that Dad had a stroke. We think it happened sometime during the night before. Mom had made her way to his side, but once she sat on the couch, she was unable to get up.  She could not reach the phone, and didn’t quite comprehend that something was amiss. We don’t know how many hours passed, but she assured us that Dad was just napping, probably not feeling well today.  In that moment, life as we knew it had changed.

As tears flooded my eyes, my thoughts ran in a million directions. Call 911. Oh my God. I had Matt (my 12 year old), and my mother in law Dolores with me. Stay calm. Oh sweet Jesus!  My mind was racing, I’ve got to get them out of here. This is too much for them to see. Why am I crying?! Dammit, shit, (Mom always professed that nothing relieved stress like cursing.) I preferred deep breathing. Breath. Ok, I’m good. It’s not working! I decided to pray instead of curse.

My family has often marveled at my ability to delegate. In fact, my brother John nicknamed me “The Delegator,” and delegate I did. In the moments before the ambulance arrived, I was able to summon help to gather up the kids, get a friend in the house for Mom, and have someone contact family. My husband, a musician, was playing a gig and not reachable. For a fleeting moment, I felt utterly on my own. Waiting for the ambulance was the longest 5 minutes of my life.

On the way to the hospital I sobbed. It was the only thing I could do, and I so appreciated the ambulance driver just allowing that to happen.  I rang in the New Year in the emergency room, along with my brother and sister-in-law. At midnight, we could hear the staff wishing each other well, but not one of us could muster the strength to stand. Our reality, as if in sympathy with my father, was momentarily paralyzing us.

The next few months were horrific. There were so many decisions to make because Dad was not going home.  Within days of his stroke we had Mom in respite, and I began to learn the language of long-term care.  As the weeks and months progressed, the family settled into our new normal.

Mom’s condition was confusing to the nursing home staff; her often-caustic behavior required soothing interventions for her and those around her.  Dad was progressing a bit, but he was completely paralyzed on his right side. No more walking, ever. He was also aphasic. After years of being the voice of reason, the voice for my mother, he now uttered unrecognizable gibberish. The aphasia was termed “expressive.” Which meant he had thoughts, he was still “in there.” His inability to express himself was excruciating for everyone, but most especially for him.  You would think that he could just write letters to form those precious words and thoughts; but any attempt was as garbled as his speech. I became his voice.

We finally settled them both into the “honeymoon” corner suite of the nursing home. Mom asked to go home every day. We never told her that the apartment was no longer there. What purpose would it have served? At least she could dream and imagine the day they could go back. But that would not be, Mom only lasted until August that year. It was her time. Although she was relatively young, only 65, she appeared as you would imagine a 98 year old would look. In her final days she was granted the blessing of hospice and finally, sufficient pain control. Blessed morphine allowed her moments of clarity that we had not seen in years. She closed her life with dignity and peace, for which my family and I will be forever grateful.

After mom’s passing, we moved into a new phase for Dad. No longer tethered to her bedside, he slowly came into what would constitute his new life for the next decade. Thinking back, I’ve often commented on how those ten years were the most stress free of his life. It’s a very sad commentary, but true.  Living in a large facility afforded him plenty of room to move around in his wheelchair and when a neighbor gifted him a motorized chair his world really opened up. The principle would call me in; um… I mean an administrator would call me in to tell me he was in trouble, again, for going off property. He would beam with delight as I listened to the manager, concerned about his adventures. I loved that. While I was professing my alarm, I was secretly thinking, You go, Dad. Go!

I became Dad’s voice, his advocate. The one he knew would be there, without fail every Saturday, Tuesday and Wednesday. I could have never done this without support. My husband stepped up to the plate from day one. I curtailed my work hours, and even the kids knew that Grandpa was a priority, just like them. My siblings, God bless them, knew I would be the one calling the shots. My sister became my greatest partner in Dad’s care. The others did the best they could, but their circumstances were all different. The one promise that they made to me was the greatest gift I could have asked for. They never hassled me. I’m sure there were decisions that I made that they would have done differently, but they always supported my decisions because it was the kind thing to do. The last thing I would have needed would to have been arguing with them.

So back to that Saturday I first mentioned. It was now over ten years after Dad’s stroke. How could I not go see him, even if it was just a quick visit? Knowing that he would very well be waiting for me in the lobby made it impossible to not go.

When I got there I was surprised to find him in bed. I came to learn that he had been up, but had a colossal “accident” while up in his chair. He sheepishly giggled and motioned, clearly letting me know that “Geeze, you can’t believe what happened!”  The room was not so fresh. Well, at least I wasn’t hungry any more. I set about to reassure him and help the aide (also a saint) clean up. Every time she came in he was embarrassed all over again. I’ll never forget what she said to him. “Philip, someday I will need help. I want that person to treat me kindly. Why wouldn’t I do that for you?” Spending time at the nursing home was often fraught with life lessons. Another thing that developed as I spent time at the nursing home was an increasing dialogue with God.  My conversation with Him typically went something like “Alright, I think I get the compassion thing already. Can we slow down on the lessons?” But yet, here was another day, and another lesson.

As the hour stretched into two I realized I was now very hungry and excruciatingly tired—I needed to leave. I hurried to washed up and set about to say goodbye. He was tired too, but I could tell he did not want me to go, not yet. I hated it when that happened. I shushed him from his last minute question, kissed him on the forehead and intended to leave. Instead I realized that although he had been thoroughly cleaned, he was clammy, he looked sad. I could not leave him like that, so I put down my stuff and got him a washbasin and we spent a few minutes reorganizing. We washed his face, neck and back, powdered him up, got a new pillowcase, some cold fresh water, and wa-la—a new man. Now he was comfortable and sleepy and he was chasing me to go. That is how I liked to make my exit.

The events of that day could have been any number of days with Dad. What makes this one different is that it was the last time I saw him before his final days. My sister spent an equally beautiful Sunday with him and on that Monday night I received a call that he had a heart attack. While he lingered for a few days, he was not aware. He was just giving us time to adjust to the fact that he was leaving. As always, he continued to be a perfect gentleman.

It’s now been two years since my dad passed and the life lessons are still being lovingly delivered. I think that the greatest gift I’ve received is the ability to reflect on my experience and have no regrets. Not that I believe for one second that I did everything perfectly, far from it. But I do know that I did the very best I could, and it made a difference in someone’s life—and was appreciated. In the end, who could ask for more?

Doing the Right Thing; It Can Come Naturally

  By lonp | August 19, 2011 - 5:13 am | ,
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by David Sprowl: Executive Director at Lutheran Towers, Atlanta; Director CCAL.

A recent and very personal experience put the concept of person-centered care in the forefront of my mind.  Last month, my 90-year old grandmother, Mama Dora, fell and broke her hip.  Until that time, she had lived independently in her own home and until her car was wrecked by her great-grandson, she was still driving.  Being the dutiful grandson, I immediately took the one and a half hour car trip to be by her side.  (more…)

In less than a two week span, she underwent successful hip surgery, a short hospital stay, rehab in another city, and was suddenly returned to the hospital with renal failure before peacefully dying.  As someone who is particularly sensitive to how individuals treat Elders, I was struck at how well the hospital staff interacted with Mama Dora.

From the aids to the nurses, to the doctors, everyone without exception focused on her.  They did not exclude my family in their  interactions, but it was clear that my grandmother held their primary interest.  They spoke directly to her, asked her personal questions about her family, about how she was feeling, etc.  Now, I must acknowledge that Mama Dora has never met a stranger, so she exerted her own personality in the exchange.

I suspected that each staff member providing care was not especially trained to be sensitive to the needs of Elders, but it was simply a natural part of who they were.  Upon asking one of the nurses, I  learned that they had not received any special training related to  eldercare.  It turns out that she and the others had only received basic patient care training delivered via educational videos.  She had never heard of culture change, patient-directed care, or person-centered care.

Often, we only hear the horror stories, but we have to acknowledge that there are those who are doing the right things for the right reasons, but lack the awareness and formal training that provides them a common language from which to speak and a platform for working at a higher level.

Although what I observed seemed to happen naturally, how much more meaningful would the experience have been if the individuals providing the care were given tools to enable them to create a culture of caring that would last beyond the current group of employees?