The Visit

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

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. Continue reading

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?

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CARF Accreditation: Striving for Excellence

Kayda Johnson, COO, Senior Resource Group (SRG)

Accreditation by an independent non-profit organization such as CARF (Commission on Accreditation of Rehabilitation Facilities) is a sign of quality and should be an important consideration of seniors and their families in making a decision about a retirement community. More than operational prudence, CARF accreditation demonstrates heightened care, comfort and peace of mind for residents and families.  What’s more, it signifies a provider’s dedication to offer a range of activities; emphasize resident choice; and a provider’s willingness to solicit resident feedback. Continue reading

CARF’s over 1,000 rigorous standards and dedication to person-centered care are reflected in provider facilities such as Senior Resource Group’s nine locations (SRG). Through SRG’s Genuine Hospitality program, service is delivered by a dedicated group of people who truly believe residents’ well-being and quality of life is their personal responsibility. The goal is not just to meet resident needs but to enrich and enhance their lives in the process.

Just as striving for excellence is an on-going endeavor, so is accreditation. SRG is committed to continuous improvement and enhanced performance in serving its residents, future residents, and their families.  As such, in addition to maintaining their current three year accreditation status at nine communities, SRG is seeking accreditation for all of the company’s assisted living communities when they become eligible this year.

“While no easy feat, CARF accreditation is a worthwhile venture for any senior living provider who seeks to improve the quality of their services or demonstrate true value, care and consideration of their residents,” said Johnson.

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Doing the Right Thing; It Can Come Naturally

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.  Continue reading

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?

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A Challenging Parent in a Challenging System: What Would Person-Centered Care Look Like?

by: Penny Anderson: Secretary  CCAL.

At the risk of sounding selfish or self-pitying, when I hear stories of adults who have lost patient, loving, and caring parents, I often feel a twinge of jealousy.  My family, like many others, was challenging; and my parents’ behaviors, including alcoholism and a variety of mental health issues, continued throughout their lifetimes.  This made attempts to ensure appropriate care for them extremely difficult.  My mother died many years ago at a relatively young age (68), so  I am going to focus on my experience with my father who lived to be almost 84.   Continue reading

My father was a demanding (including of himself), obsessive-compulsive man throughout his life, with the focus of his obsessions being primarily on things, processes and routines. After he retired and my mother passed away my father developed a rare and debilitating disease called Primary Lateral Sclerosis (PLS), which meant he would gradually lose limb and likely some speech function, however his cognitive abilities would remain intact.  For my father, the PLS first resulted in the gradual loss of the use of one leg and the eventual need for a wheelchair.   This was one of the worst possible diseases for an obsessive-compulsive person such as my father to endure.  His need for assistance coupled with his uncompromising rules and routines was unbearable both for him and for those who cared for/about him.   While quite a few of his routines and demands could easily be considered bizarre, they were extremely important to him; they were his ways and it was his life that was  eroding.

We were unable to locate an assisted living facility that met my father’s requirements (including a willingness to allow residents to drink at will) or that would accept him given his physical needs.  Another issue was that he refused to wheel himself in his wheelchair, insisting on being pushed at all times (strength was not an issue — at the time, he was still able to do an amazing 60 pushups).  The residences we visited were also reluctant to accept an individual who needed assistance with transfers from a wheelchair.  Some would have accepted him until he reached the point where two individuals would be needed to assist, but then he would have had to leave.  He ended up hiring an agency to provide him with a 24-hour in-home care provider.

My father refused to provide an actual bed or bedroom for his caregiver – a sleep sofa was used, which had to be folded up each morning and taken down each night.  The sofa was in a room that was actually my father’s office.  Each provider tried to comply with his many rules and demands, but it was extremely difficult for them and frustrating for him.   An example of one of his somewhat unusual requirements was that his caregiver had to put on my father’s shoes (with rubber soles) and socks prior to pulling on his trousers (the reverse was true as well – trousers off before shoes).  He would not budge on this routine, even though it made getting the pants on and off  very difficult.

Some caregivers were much better with my father than others, in terms of patience, tolerance, and even knowledge of how to provide the most basic physical care e.g., transfers.   However, most of the providers sent by the agency spoke little to no English, which for someone as precise as my father was extremely frustrating and upsetting, again for both him and the caregivers, and often resulted in my father becoming extremely angry, shouting and name-calling.  Particularly for someone with limited English, it can be difficult to understand the exacting routines my father demanded:there must be exactly 15 bitesize shredded wheats in the cereal bowl; the cereal box must be opened in a certain way; the juice glass must be exactly half full; the bathroom fan cannot be turned on for any reason; a certain pen must always be in a certain place, etc.  Needless to say, he went through many caregivers.  The home care agency never suggested that we meet to discuss his needs or issues.  My father would not suggest such a meeting, and he was adamant that I not contact them myself.

Towards the end, my father lost the use of his other leg.  He had also begun to lose the use of his hands and his clarity of speech was diminishing.  With neither leg functioning, he required two caregivers for transfers. He decided he needed to move immediately into  a nursing home.   His selection was one that I recommended he avoid after speaking with the county ombudsman.  But his chosen facility allowed him at least one drink before dinner, and he considered the place “classy” as well.  The experience was a nightmare.  His first day there, three staff members came to prepare him for bed and were in such a rush that they would not even take the time to listen to his routine, much less abide by it.  His items were randomly tossed out of his trouser pockets, rather than removed in the careful order in which they had always been removed and placed just so on the bureau.  Of course his shoes were taken off before his trousers.  He felt manhandled, disrespected, and abused.

My father lasted two nights in the nursing home, and then suffered a massive stroke.  When it became clear at the hospital that he needed to be removed from life support, he was returned to the nursing home.  We contacted hospice, who came regularly to ensure that he was receiving enough morphine (often he was not).  One early morning when I arrived in his room, the television was on.  Nighttime staff had taken advantage of his stroke to watch some TV.

I am a staunch believer in person-centered care/living.  But in some cases, such as my father’s, given the murky mix of issues affecting everyone involved, I struggle to conceptualize what it would actually look like. How could someone like my father mesh with person-centeredness and vice versa?   I would love to hear from others who have experienced, or are experiencing, similar convoluted and conflicting physical, mental, and emotional experiences/anguishes with an aging parent.


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Person-Centered Care: Is It Actually Happening

by: Karen Love, Founder CCAL

Recent experiences have me wondering if our country does a
better job caring for and about people when they are dying in a hospice program than when they are living.  My mother passed away earlier this  year in a hospice.  The last several months of her life included numerous hospitalizations, several ambulance trips to the Emergency Department, a 10-day stay at a nursing home for rehab services, and many doctor and therapy appointments. Continue reading

During this time she received care from the spectrum of health care settings including primary, ambulatory, acute, rehabilitation, sub-acute, nursing home, and hospice.  The clinical care she experienced in all of the settings – except the nursing home – was excellent.  Yet it was only in the hospice setting that she and our family experienced humane care.

While my mother was only in the hospice for five days, the staff and volunteers all took the time to get to know us, made us feel welcome and at home, were attentive to our comfort needs, went out of their way to answer questions, and even made sure we knew when food was set out.  Everyone we encountered at the hospice was kind, caring, sensitive, and thoughtful.  They were as focused on my mother’s clinical needs as her human needs.  As a result, the sad and difficult experience of dying for my mom and losing a parent -grandparent for our family was special and memorable.

In contrast, my mother’s 10-day stay at the nursing home was barely humane and mostly unpleasant.  Not one staff member took time to get to know anything about her other than her medications. Despite the fact that she was very ill and scared, the staff bathed and toileted her as if she was an object.  The environment was noisy and intrusive at night making sleep difficult.

The other care settings at least provided good quality clinical care, but ranked low in humanism.  Staff generally were hurried and only focused on her clinical care: taking her temperature; drawing blood; and delivering medications.  Occasionally someone would mention how cold a room was, but make no effort to do something about it or to get a blanket.  It was as if they had blinders on about the fact that they were caring for human beings with emotional, physical, mental and social needs.

In our family’s experience, all the talk about person/patient-centeredness was just that…talk.  It’s hard to understand why.  Not only was the time at hospice good for our family; it was the only setting where the staff seemed to actually enjoy being there.  Maybe person-centered and humane care is good for staff too.

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Satisfaction of Life Self-Assessment

With Sincere Appreciation to Professor Edward Diener, Josseph R. Smiley Distinguished professor of Psychology and Editor of Perspectives on Psychological Science, for granting us permission to share this:

This test is designed to identify your level of satisfaction with life Continue reading

 NOTE: To understand life satisfaction scores, it is helpful to understand some of the components that go into most people’s experience of satisfaction. One of the most important influences on happiness is social relationships. People who score high on life satisfaction tend to have close and supportive family and friends, whereas those who do not have close friends and family are more likely to be dissatisfied. Of course the loss of a close friend or family member can cause dissatisfaction with life, and it may take quite a time for the person to bounce back from the loss.

 Another factor that influences the life satisfaction of most people is work or school, or performance in an important role such as homemaker or grandparent. When the person enjoys his or her work, whether it is paid or unpaid work, and feels that it is meaningful and important, this contributes to life satisfaction. When work is going poorly because of bad circumstances or a poor fit with the person’s strengths, this can lower life satisfaction. When a person has important goals, and is failing to make adequate progress toward them, this too can lead to life dissatisfaction.

 A third factor that influences the life satisfaction of most people is personal – satisfaction with the self, religious or spiritual life, learning and growth, and leisure. For many people these are sources of satisfaction. However, when these sources of personal worth are frustrated, they can be powerful sources of dissatisfaction. Of course there are additional sources of satisfaction and dissatisfaction – some that are common to most people such as health, and others that are unique to each individual. Most people know the factors that lead to their satisfaction or dissatisfaction, although a person’s temperament – a general tendency to be happy or unhappy – can color their responses.

 There is no one key to life satisfaction, but rather a recipe that includes a number of ingredients. With time and persistent work, people’s life satisfaction usually goes up when they are dissatisfied. People who have had a loss recover over time. People who have a dissatisfying relationship or work often make changes over time that will increase their dissatisfaction. One key ingredient to happiness, as mentioned above, is social relationships, and another key ingredient is to have important goals that derive from one’s values, and to make progress toward those goals. For many people it is important to feel a connection to something larger than oneself. When a person tends to be chronically dissatisfied, they should look within themselves and ask whether they need to develop more positive attitudes toward life and the world.

There is no computer-related interactive component to this instrument in an effort to protect your anonymity. No one has access to your results; they are for your review only.

Below are five statements that you may agree or disagree with. Using the 1-7 scale below, indicate your agreement with each item by placing the appropriate number on the line preceding the item. Be open and honest in your responses. 

  • 7 – Strongly Agree
  • 6 – Agree
  • 5 – Slightly Agree
  • 4 – Neither Agree nor Disagree
  • 3 – Slightly Disagree
  • 2 – Disagree
  • 1 – Strongly Disagree

_____ “In most ways, my life is close to my ideal.”

_____ “The conditions of my life are excellent.”

_____ “I am satisfied with my life.”

_____ “So far, I have gotten the important things I want in life.”

_____ “If I could live my life over, I would change almost nothing.”

30 – 35 Very high score; highly satisfied
Respondents who score in this range love their lives and feel that things are going very well. Their lives are not perfect, but they feel that things are about as good as lives get. Furthermore, just because the person is satisfied does not mean she or he is complacent. In fact, growth and challenge might be part of the reason the respondent is satisfied. For most people in this high-scoring range, life is enjoyable, and the major domains of life are going well – work or school, family, friends, leisure, and personal development.

25 – 29 High score
Individuals who score in this range like their lives and feel that things are going well. Of course their lives are not perfect, but they feel that things are mostly good. Furthermore, just because the person is satisfied does not mean she or he is complacent. In fact, growth and challenge might be part of the reason the respondent is satisfied. For most people in this range, life is enjoyable and the major domains of life are going well – work or school, family, friends, leisure and personal development. The person may draw motivation from areas of dissatisfaction.

20 – 24 Average score
The average of life satisfaction in economically developed nations is in this range – the majority of people are generally satisfied, but have some areas where they very much would like some improvement. Some individuals score in this range because they are mostly satisfied with most areas of their lives but see the need for some improvement in each area. Other respondents score in this range because they are satisfied with most domains of their lives, but have one or two areas where they would like to see large improvements. A personal scoring in this range is normal in that they have areas of their lives that need improvement. However, an individual in this range would usually like to move to a higher level by making some life changes. 

15 – 19 Slightly below average in life satisfaction
People who score in this range usually have small but significant problems in several areas of their lives, or have many areas that are doing fine but one area that represents a substantial problem for them. If a person has moved temporarily into this level of life satisfaction from a higher level because of some recent event, things will usually improve over time and satisfaction will generally move back up. On the other hand, if a person is chronically slightly dissatisfied with many areas of life, some changes might be in order. Sometimes the person is simply expecting too much and life changes are needed. Thus, although temporary dissatisfaction is common and normal, a chronic level of dissatisfaction across a number of areas of life calls for reflection. Some people can gain motivation from a small level of dissatisfaction, but often dissatisfaction across a number of life domains is a distraction, and unpleasant as well.

10 – 14 Dissatisfied
People who score in this range are substantially dissatisfied with their lives. People in this range may have a number of domains that are not going well, or one or two domains that are going very badly. If life dissatisfaction is a response to a recent event such as bereavement, divorce or a significant problem at work, the person will probably return over time to his or her former level of higher satisfaction. However, if low levels of life satisfaction have been chronic for the person, some changes are in order – both in attitudes and patterns of thinking, and probably in life activities as well. Low levels of life satisfaction in this range, if they persist, can indicate that things are going badly and life alterations are needed. Furthermore, a person with low life satisfaction in this range is sometimes not functioning well because his or her unhappiness serves as a distraction. Talking to a friend, member of the clergy, counselor, or other specialist can often help the person get moving in the right direction, although positive change will be up to the person.

5 – 9 Extremely dissatisfied

Individuals who score in this range are usually extremely unhappy with their current life. In some cases this is in reaction to some recent bad event, such as widowhood or unemployment. In other cases, it is a response to a chronic problem such as alcoholism or addiction. In yet other cases, the extreme dissatisfaction is a reaction due to something bad in life, such as recently having lost a loved one. However, dissatisfaction at this level is often due to dissatisfaction in multiple areas of life. Whatever the reason for the low level of life satisfaction, it may be that the help of others is needed – a friend or family member, counseling with a member of the clergy, or help from a psychologist or other counselor. If the dissatisfaction is chronic, the person needs to change, and often others can help.


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The Language of Culture Change: Informed Choice

by Kathy McCollett: Kathy is an Organizational Culture Change Specialist with PHI’s Training and Organizational Development team.

Language is a powerful indicator of organizational culture.

The words we choose—either consciously or unconsciously—influence our actions. We have worked hard in the culture change movement to choose words that reflect home and person-directed values. For example, the term “moving in” is an alternative to “admission” and “walking” replaces “wandering.” Continue reading

I reflect a lot on language and lately I have been pondering the notion of “informed consent.”

What does “Informed Consent” Really Mean?

If you think about it, we almost all have an opinion about what someone else should do in any given situation. We believe we have good judgment and helpful advice. This is also true of doctors, nurses, dieticians, therapists and others in the long term care professions.

As professionals, we want to do the “right thing” by someone who sees us as more knowledgeable about a certain diagnosis, procedure or treatment. We discuss with the elder or consumer the issue or concern we have in relation to a diagnosis or condition, providing them with the information we think they need in order to make a decision.

Quite naturally, but unfortunately, we usually have an opinion about what we believe the correct decision ought to be, and our perspective is the filter from which we offer the options. All of this is with good intention.

The purpose of the discussion isn’t just to provide information, but to assist the elder/consumer to make a decision related to ongoing care and treatment. What we are looking for through this discussion is what has come to be known as “Informed Consent.” However, the phrase “Informed Consent” infers that if we tell the elder or consumer what we feel they need to know, they will consent to the treatment or procedure.

Informed Choice

At this time, we recognize the right of all persons to self-determination in regards to medical care and treatment. In order to ensure that true choice is being offered and accepted, the person must not believe that the only acceptable way to proceed is to consent to the perspective of the medical professional. Using the phrase “Informed Choice” would better embody the rights of the individual to be informed or otherwise gather the information needed to make a true choice regarding medical treatment.

It is important that the individual has the information available to make the choice, the ability to follow through with their decision, and the right to be responsible for the consequences of those choices.

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Designing for Health and Well-being

by Lydia Stone Kimball, ASLA, LEED AP BD&C, Principal, Mahan Rykiel Associates Inc., Landscape Architecture, Urban Design and Planning. These exerpts are from Lydia’s article “Putting the Health Back in Healthcare Settings”, HealthCare Design Magazine online, July 12, 2011.  Lydia’s insightful perspective, creativity and commitment to person-centeredness are evident  throughout  her article.   We are delighted that she is sharing a sampling from that article with us:

“Much has been written about the need to create healthier environments in healthcare facilities. One might reasonably wonder why healthcare environments would be otherwise. However, after a generation of designing facilities to be more and more sterile, more and more suburban, and more and more maintenance-driven, it’s not hard to see why the pendulum might swing toward a more patient-centered environment. Continue reading

As landscape architects with a healthcare practice that includes urban and suburban hospitals, senior living, and specialty facilities, Mahan Rykiel Associates Inc. is seeing a number of emerging trends that indicate most facilities, in some way, now are incorporating a healthy environment as part of their design strategy.

Understanding of the outdoors as a healing and restorative environment can be found not only in the acute care world, but also in specialized healthcare venues, where this element can be particularly valuable.

There is scientific evidence and widespread support for the idea that outdoor environments are good for people. Exposure to the outdoors reduces stress and in measurable ways reduces the amount of medication patients require. There also is evidence to suggest that a well-designed outdoor environment contributes to staff retention and can be a key marketing tool for facilities that are competing for both patients and healthcare professionals.

The synergy between healthy people and healthy outdoor environments is becoming more evident in healthcare facilities. Coupling compliance with regulations and adherence to various guidelines with design ingredients that enhance healing can be a powerful combination. A roof garden that provides a calming view from a patient’s bedside, absorbs runoff, or provides space for fresh vegetables; a mulch path around gently curving rain gardens where butterflies hover; or pockets of herbs tucked into a planted border along the walk between existing buildings, are all ways that designers can easily incorporate these elements into their projects.

Creating places of respite and patient access to the outdoors often can be done by incorporating simple elements into an existing facility. For seniors, in particular, having a small overhang covering a doorway allows space for several people to gather to listen to the rainfall. Incorporating a rain chain near a window or door can capture the sight and sound of that rain, even for those patients or residents who are not able to get outside.

In Annapolis, Maryland, for example, a skilled nursing facility incorporated a courtyard garden in the very center of the second floor unit—with a covered doorway and windows surrounding the garden, everyone in the unit can feel a part of the space.

At the same time, these landscape decisions allow healthcare providers to send a simple but important message about their facility: This is a place where healing is important on a personal level and on a global level. That this message seems to be resonating more and more is a positive trend.

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The Eye of the Beholder

by: Sheryl Zimmerman, PhD., Kenan Flagler Bingham Distinguished Professor of Social Work and Public Health and Co-Director of the Program on Aging, Disability, and Long-Term Care of the Cecil G. Sheps Center for Health Services Research

My father, who was suffering from dementia, needed to move to a nursing home.  The assisted living community in which he had been living couldn’t provide the medical care he needed, a fact that became abundantly clear when he was hospitalized.  My mother and I worked with the hospital social worker to select the nursing home that best met our primary need:  location, location, location.  We wanted to visit my father — often — and distance mattered.  We knew the closest nursing home wasn’t the “best” nursing home in terms of its quality rating, but it was the best in terms of what mattered to us.  The social worker made the necessary arrangements, and he was to be transferred the next day. Continue reading

Later that same day, a well-intentioned physician who valued quality, quality, quality, changed the discharge plans so that my father would be discharged to a “better” nursing home.  What I found rather remarkable about this experience was that (1) the physician made a decision about discharge location without talking with my father, mother, me, or the social worker, and (2) the physician expressly changed the discharge plan, without inquiring as to how it had been determined.  My indignation as to how this unfolded made it easy for me to take action to over-ride the physician’s discharge plan …
without talking with her about it, since that was a style with which she was obviously familiar.

I reflect on what would have happened had my mother and I not considered in advance what mattered to us, and had we not felt empowered to guide my father’s care.  We would have spent much less time with him during the three months he lived in the nursing home before he died.  Restated: We would have lost cherished time, time when it was most important to be a family.

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Preserving Assets, Peace of Mind and Human Dignity

by: Suzana Hot, Esq., Tucci Hot & Crupi

As important as the preservation of assets is attaining peace of mind via the creation of wills, living wills, powers of attorney, guardianships, and conservatorships. Continue reading

Why is estate planning important?
Estate planning allows you to direct how your estate is distributed among the people in your life, whether they are related to you or not. It eliminates the need for the representative of your estate to obtain a bond in order to administer the estate. In NJ, if you die without a Will, an administrator must be appointed by the court in order to administer your estate; that person must obtain a bond in order to serve. The priority of persons to be appointed is dictated by statute & the process can become overwhelming, even litigious depending on your family size and structure. An estate plan may also allow you to structure your estate in such a way that there is optimal tax savings at your death, and if you are married, at your spouse’s death.

Power of Attorney and Living Will
There are many issues that may arise if you do not execute a Living Will informing your family and medical practitioners of your wishes under certain circumstances. This can eliminate, to some degree, the stress a family faces when certain decisions must be made. Without a Power of Attorney for Health and/or Finances, if you are unable to make decisions or handle your affairs, there may be no legal authority for anyone else to do these things for you, which would necessitate a guardianship and involves the Surrogate Court in the county in which you reside.

A guardian of the person and property acts for the person adjudicated as incapacitated. There may be some aspects of life over which the incapacitated does retain the ability to make decisions, and this is addressed on a case by case basis. The guardian of the person and property makes financial and healthcare decisions for the incapacitated person and there is Court oversight along the way. The guardian must report annually to the Surrogate Court of the County in which the incapacitated person is a resident, as well as to the interested parties in the matter. If you have a family member for which you think a guardianship may be required, you should contact an attorney that specializes in guardianships to discuss the situation and determine whether it is in fact necessary. The attorney will be able to guide you through the process to make it as seamless and painless as possible as the overall situation involving the incapacitated person is often very stressful already.

There are often situations where an individual is mentally competent to make financial decisions, but either does not want to handle their finances or are incapable of handling their finances. The individual may wish to appoint a person to do this for them, but with oversight. In such a situation, an action may be brought before the Surrogate Court in the county where the person resides to have a Conservator appointed. Again, if you or a family member are in such a position, you should contact an attorney that specializes in this practice area to discuss the matter fully.

Asset Protection Plans
In-home care as well as Assisted Living and Nursing Home care is costly. Depending on the facts and circumstances of the situation, both medical and financial, it may be beneficial to speak with an attorney about an asset protection plan. If you or your loved one are diagnosed with a debilitating illness, including but not limited to, Alzheimer’s Disease, Dementia, or Parkinson’s Disease, which may eventually require around the clock care for you or your loved one, the sooner you speak with an attorney who is familiar with and specializes in this area, the better.

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