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2017 Resident's Voice Submissions

The Resident’s Voice is an opportunity for residents from facilities across the country to share their ideas about this year’s Residents’ Rights Month theme with other residents, ombudsmen, families, community members and nursing home staff. Find 2017 entries below.


(1) I Love My Life - An essay by Tim Conroy Ingham County Medical Care Facility (Dobie Road) Room 318-2

​I Love My Life - An essay by Tim Conroy Ingham County Medical Care Facility (Dobie Road) Room 318-2
Okemos, Michigan

My life is full and worth living. The quality of life I enjoy is very high. I believe the quality of life of an individual in a nursing home is as important as other medical needs. Without a reasonable quality of life there is little motivation for nursing home residents and to keep on living. Motivation to keep on living is necessary for medical treatments to be effective. Read the entire essay here.

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(2) Kinds of Choices - A poster by Dar-Way Nursing Home Inc. PEERs (Pennsylvania Empowered Expert Residents)

Kinds of Choices - A poster by Dar-Way Nursing Home Inc. PEERs (Pennsylvania Empowered Expert Residents)

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(3) "What factors contribute to the quality of life in your nursing home?" -  A poster by Towanda Memorial Guthrie Skilled Nursing Unit PEER (Pennsylvania Empowered Expert Residents)

What factors contribute to the quality of life in your nursing home? -  by Towanda Memorial Guthrie Skilled Nursing Unit PEER (Pennsylvania Empowered Expert Residents)

Poster Side A

Poster Side B

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(4) It's All About Me - A poster by Barnes Kasson Skilled Nursing Unit PEER Group

It's All About Me - by Barnes Kasson Skilled Nursing Unit PEER Group

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(5) Good Quality Care - A poster by Broad Acres Skilled Nursing PEER group

Good Quality Care - Broad Acres Skilled Nursing PEER group

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(6) How About Asking Us - An essay by Dick Weinman

"We will introduce a new administrator to you, once she or he is chosen,” or words to  that effect, spoken to the residents of my ALF by the Big Boss.  

The Administrator of the dwelling in which I dwell is to retire soon. Several candidates  are competing for the honorificabilititudinitatibus (indeed there is such a word, but rarely used   most notably by  Shakespeare and Joyce.)  One of the seekers of the job  – naturally, the best  -   whatever “best” is in this case - will be selected on the basis of their vitae and application. Then,  a few will be selected to be interviewed (one assumes by the Big Boss.) A choice will then be  made among the interviewees, and the Administrator will be crowned when being introduced to  the residents – we, the people whom s/he will administer.  (And without whom there would be  no need for her/his administrative abilities.)  

Wait. There’s something wrong here: the scenario I have just described omits a role for  the residents - those whose lives are impacted by the Administrator. Not to be included as a stake holder on the Search Committee (There is one, right?)  Not to examine the written applications  of the contenders? Not to interview them?  

While it will be nice to see who will have the say how we live the final years of our lives, it would be nicer – and more important to the residents – to have some input in the selection process. 

After all, we are the consumers – well, maybe not entirely. As truth may have it, our   children are the real clients of the ALF, the ones who chose where we live or where we’re put  away.  And pay the bill. They, as   the real  customers of the ALF, should help choose among the  applicants -  have their thoughts added to the judgment of the “honchos,” “bosses,” whatever. 

Is this scenario outlandish? Maybe.  Is it unheard of? No. There are other institutions in  our social landscape, in which the affectees play a role in the hiring of the affector.  

I have participated in one of them, as the head of a university program seeking a new  faculty member. Our search committee included student representatives.  The students, after all,  were the “customers.” They studied the applications of contending persons and participated in interviewing them. The vote of the students was important in the selection process. 

Even in the ginormous world of global business, the Deloitte company, a world-wide  network of business services, allows its employees to chose their CEO. Whole Foods allows its  employees to oust a boss if s/he doesn’t work out.  The editor-in-chief of The Guardian  newspaper is selected by the staff. And, in the mid-size community in which I live, the  prospective City Manager, while chosen by the City Council, is interviewed by the residents of  the city.  

Even in the Long Term Care industry such revolutionary ideas like the Green House  Project, the Consumer Voice, Pioneer Network,  and the development of the concept of  “Resident Centered” care are but steps away from residents playing a role in the choice of  Administrators. 

From the remarks of the Major Domo about the selection of the Minor Domo who is to  administer our ALF, it seems that we residents will only have an introduction. Perhaps the  Administrator who follows her/him, will be chosen by we, the people, rather than appointed. 

Read the essay as a PDF here.

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(7) What Makes Me Happy - A photo collage by the PEER group of The Personal Care Home of Guthrie Towanda Memorial Hospital

What Makes Me Happy - A photo collage by the PEER group of The Personal Care Home of Guthrie Towanda Memorial Hospital

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(8) Six Years Later - An essay by Bob Carr of Richmond Virginia

Bob Carr of Richmond Virginia wrote an article for the blog Veteran Speaks. Read the essay here.

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(9) My Choices - Videos by Veldonna Armstrong of The Bridge in Post Falls, Idaho

My Choices - Videos by Veldonna Armstrong of The Bridge in Post Falls, Idaho

 

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(10) A Resident's Definition of Quality - An essay by Penny Shaw

A Resident's Definition of Quality - An essay by Penny Shaw

Read this essay as a PDF here.

Quality is something we all pursue in life. We can define it as excellence. CMS' Nursing Home Compare 5-star rating system includes health inspections, staffing and quality measures. The focus is primarily on physical and clinical quality as proxies for overall quality. Since care and life in nursing homes are complex and multidimensional, the expertise from residents' lived experience should be used for a more comprehensive list of quality indicators - skilled care, a real home, resident-direction, and compassion. 

SKILLED CARE 

Residents want high-quality care, so their physicians, nurses and rehabilitation staff must be knowledgeable, skilled, and experienced. They must deliver the full range of clinical care for medical, physical, cognitive and emotional needs. Physicians and nurses must work to prevent serious care problems including falls, pressure ulcers, infections, dehydration, weight-loss, pain and elopement. The ability to manage complex care, prevent unnecessary secondary complications, avoid inappropriate treatments and unnecessary drugs, restore function, manage chronic pain, detect changes in physical and mental status and avoid adverse events and harm are all essential. Physicians and nurses must also ensure residents' rights to self-determination in medical care, to informed consent, to refuse treatment and to choose a personal attending physician.  

CNAs have a critical role as providers of direct care. They must keep residents clean and comfortable, monitor for skin breakdown, make sure residents are properly fed and hydrated, and assist with ambulation and safe transfers. They must also make sure residents have their assistive devices - glasses, hearing aids and dentures; provide some engagement to reduce agitation, as well as protect clothes and other possessions from loss and damage. There must be adequate staff to take care of residents properly and respond to call lights in a timely manner. A strong positive relationship between total direct-care staff and quality care has been shown. 
Skilled rehabilitation services across the continuum of physical, occupational, speech and respiratory must be provided to maintain and improve functioning, promote independence and comfort through devices and equipment such as individualized manual and power wheelchairs. 

A REAL HOME 

Facilities are residents' homes where they might live for a long time. A home should be a place where they feel they belong, feel comfortable, secure and happy. Quality experiences depend upon the contributions of staff from all departments who support residents making their own daily life choices based on their preferences and priorities. Kitchen staff must see that residents get their favorite food and that dining is an enjoyable time to socialize. Activities staff must see that residents have engaging, interesting, fun activities based on their interests, strengths and real needs. In addition to providing distraction and leisure, being with other residents at activities can support forming friendships and feeling part of a community. Without this purpose and meaning there are days of boredom, loneliness, unhappiness.  

Social workers must help residents access facility services and past associations, like their faith communities, to promote the continuity of each person before and now. Maintenance must provide a comfortable calming pleasant home environment, free of hazards. Maintenance must also assist in helping to make residents' rooms spaces that promote preservation of individual selves and identities by providing furniture and places for cherished possessions. Management must provide access to outdoor areas where residents can walk and wheel for pleasure as they did before. Housekeeping must keep the environment sanitary. Laundry must make sure units are stocked with clean linen to save CNAs' time, and that residents' clothes don't get damaged or lost, ensuring residents feel secure about their belongings. 

The director of staff training must keep staff's skills current and can serve as a general resource. The hairdresser must make residents look kept. The receptionist has an important role in greeting residents and, perhaps, ensuring mail is not lost and seeing that residents get their spending money. Central supply has a role in the quality of life of residents, and must keep units stocked so direct-care workers can be efficient and spend their time with residents, not chasing supplies. The administrator must set the tone for the work of all departments so residents' days are made good, and their expectations met that they are living in their real home. 

RESIDENT- DIRECTION 

Residents, or their legal representatives, are in the best position to identify residents' unique needs and goals, as well as direct and manage services. Facilities must accommodate each resident's individuality by respecting their right of choice. Independence and a dignified existence can only occur when residents have self-determination and autonomy in decisionmaking regarding every aspect of their lives, balanced against safety standards. Personal control, the ability to be effective in getting significant choices, and autonomy, the innate desire to experience freedom and to be one's own true self as the origins of one's actions, are both essential. Even residents determined incompetent, should be able to assert this right based on their capacity.  

The resident-direction process for staff includes knowing the person's own unique life story, culture, personality, wishes, experiences, feelings and perceptions, then respecting the person's expertise and supporting their decisions. The positive psychological impacts for residents of autonomy and control are numerous - having a sense of agency, getting individual needs and preferences met, flattening hierarchy with staff, experiencing freedom, being more involved and empowered, feeling joyful, interested, optimistic, improving self-esteem, leading authentic lives, retaining one's own identity. Preserving residents' self-determination, agency and autonomy also benefits staff. There is less conflict. Physicians will listen to residents or their proxies, with regard to administration of medications and treatments. Nurses and CNAs will be less affronted, no longer misinterpreting requests as signs that residents do not respect their expertise.  

Without resident-choice there is paternalism which discounts the individual, thwarts a basic need for control resulting in negative effects on mental health. Feelings of powerlessness, loss of selfefficacy, decreased motivation and engagement, poor adaptation, more emotional distress, increased pessimism, retreat, passivity and fear are the cumulative set of reactions referred to as 
learned-helplessness. A self-directed model of care and life as practiced in written care plans, should thus be the gold standard. 

COMPASSION 

Technical task-oriented care and services alone are insufficient. Compassion is needed. Compassionate staff respond to the central human need for connection, psychological care of the whole person - empathy. Empathy is the ability to understand the emotional state of another person, be kind, humane, gentle, involved and comforting. Compassionate staff listen actively and attentively, recognize, understand, acknowledge and respond to anxiety, worries, distress, pain, suffering and vulnerability. Compassionate staff go above and beyond with significant acts of kindness, from the gift of a simple can of favorite soda to a resident to emotional support for family members during a vigil. Management must have staffing patterns that allow sufficient time for staff and residents to develop these quality interactions so critical for vulnerable residents.  

Management's role is to also provide leadership and organizational support for compassion. They must have an open-door policy for both residents and family members, seeking them out, valuing them, making them feel comfortable speaking up and being involved, be good listeners and be open-minded. They must address any and all problems identified and solve them, creating mutual respect. Daily compassionate interactions have the power to alter lives, enhance health outcomes, create trust, prevent emotional harm, provide hope, and remind us of our common humanity. 

OUTCOMES 

Quality matters. Providers can assure quality facilities by being committed to service excellence, and by creating a dynamic system of continuous adaptation and improvement in planning, preventing, identifying and correcting problems. Quality experiences will provide quality outcomes for residents, transforming their lives, boosting satisfaction, and assuring they achieve not only their personal goals and outcomes, but their highest practicable levels of physical, mental and psychosocial well-being. 

Penelope Ann Shaw, PhD
Board Member. Massachusetts Advocates for Nursing Home Reform. Member. Citizens Advisory Committee. Massachusetts Executive Office of Elder Affairs. 

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(11) Children of the Fog - An essay by Filmore Jacobs of East Bay Rehabilitation Center

Children of the Fog - An essay by Filmore Jacobs of East Bay Rehabilitation Center

Read the essay as a PDF here.

Elegy

A dense fog had moved in during the night and was ignoring the sun’s feeble attempt to burn it off.   We traveled slowly to lessen the fog’s dangers. Visibility was bad enough that only the ghostly-gray outlines of the trees could be seen at the sides of the narrow road. I began to worry that we had started our little jaunt too early on this foggy morning.      

Barbara paid little attention to conditions outside her car window except to tap on her glass in wonder at the fog. So much was alien to her since the onset of her dementia and its consequent loss of memory that she took a child’s delight in the things that now seemed ever new. She hugged her stuffed animal to her chest, almost tight enough to activate its voice box.     

I glanced at her from time to time, trying to keep my mind on the road and off that sinking feeling that comes to me when I contemplate our sixty years of near-perfect marriage and the disturbing certainty that it must end prematurely in any preferred condition. Noticing my attention, she gave her head a slight toss the way women do to compose their hair and this caused her hair to float about her head in a lovely dark cloud that left me troubled.

Are women even vaguely aware that these unconscious little tics burn themselves into a man’s soul—only to haunt his nights after they are gone from his life?  

Suddenly, without warning, my thoughts were interrupted by the high-beams and fog-diffused headlamps of a vehicle coming head-on. Reflexively, I turned the car hard right as far as I dared, causing the oncoming vehicle to barely miss our left side. But I kept us out of the brush and unmired in the gullies at the edge of the road.

Our sudden swerve threw Barbara’s weight against her stuffed animal, causing it to exclaim in a child’s gleeful voice, “That was a great hug! Now I’m ready for another one!” 

We had stopped for a frightened minute to calm our nerves, when the absurdity of the toy’s voice caused us to laugh together, although such attempts might just have been her way of trying to stay with the mood. No matter, her efforts were the important thing—in her former life she was fearless and wouldn’t suffer anything to defeat her. Some of that courage was still in her.It is hard to imagine the kind of daily struggle Alzheimer’s patients must go through.               

“Do you remember that time soon after we were married, when we fell asleep on the beach and woke up after dark? All we could hear was the seething murmur of the ebb tide and a mournful fog-horn way out at sea. That was pretty scary, wasn’t it?”             

Yes,” she answered and squeezed my hand firmly. It was clear that she had some memory of the event and I was grateful to know that our ties with the past had not been completely severed. Her loss of short-term memory created a few daily disconnects, but how dull our lives would have been without the long-term memories that enrich us and inform our struggles.

If a dear one’s splintered person is the sum of the many parts that made her a whole person, then the memory of our lives and experiences must be the most profound part of it.

It is saddening to learn how the dementias work insidiously to steal one’s personhood while the rest lives on—identity theft in extremis

Sooner or later, without further scientific advances, I think any of us might become the child of one fog or another. I wondered what Barbara thought of her condition, but the possibility of guessing what’s in another’s mind is usually fraught with error, even without dementia. We are like unmoored islands that would drift apart but for the loving relationships that anchor us.

(This unmooring is a greater risk in nursing homes where so much autonomy is relinquished. Friends and family should be encouraged to visit or call often. As a long term resident here I know how my spirits are nourished by contact with my people from the outside—I am fortunate to have that support.)  

Barbara was an extraordinary woman, strong of mind and spirit, and she had schooled herself after her retirement from business (and before her Alzheimer’s affliction) to manage tennis tournaments and ultimately become the Executive Director of the U.S. Tennis Association’s Mid-Atlantic Division. It was remarked by her tennis mates that she was as clever and quick as a fox and how difficult it was to get a tennis ball past her. If a marriage can survive playing tennis doubles with one’s intense wife as his partner, nothing could bode better for the health of the union. I’m sure all wives are beautiful to their men and Barbara’s dark, exotic beauty was a thing of joy to this man.   

For a few minutes today, she and I became the happy, resourceful people we once were, as we laughed together at her stuffed animal’s startling voice. She had occasional moments of sly mischief that caused most people to like her soon after knowing her. I was with her in those early days when her psychiatrist asked her how she thought her dementia was doing and she replied:

“I don’t know—because I have Alopecia, no—wait, that’s Fil’s condition… at this point the doctor knew he was being put on, but he grinned and waited for the punch line.) She continued, “I meant to say, I have Alzheimer’s and can’t remember diddly-squat.” (In those early days she could still invent neologisms with fitting accuracy). The doctor gave her an appreciative chuckle. She had her moments in the early days of her illness, dealing with it the way she had dealt with her life; with resolve and humor.  About five years ago Barbara passed away. May she be exalted in her new home among the stars.

******

Greetings to those of you who have precious ones in a Nursing/Rehab Center or one who is about to enter same. No worries, but please take it from me, because I am one of you—a long-term resident at East Bay Rehab in Clear Water, FL.  Let your Special Ones know if you are free to visit them on certain days of the week so that they will have something fresh to look forward to. Regularity and dependability are the keys to success in this shared endeavor. Our directors, nursing staff, and CNAs are excellent at this facility, and at others, I would imagine—I believe oversight is usually provided by departments of local governments. Help your residents to organize smaller rooms than they have been accustomed to. Try to distract them from too much TV—a walk and activity outdoors is of greater benefit to their health.

Shakespeare said it best, circa 500 years before the invention of television and I must borrow it now:  “Sound and Fury Signifying Nothing! A Tale Told by an Idiot!”

Don’t forget how important human touch is—it will show your affection for your Special Ones: (Massage lotion onto dry skin as a treat—check with the nurses for help if questions of sensitivity arise).  

Good Luck from your fellow resident and writer, Fil Jacobs

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(12) My Life, My Care, My Choices - A poem by Vickie Edwards, a resident at Morgantown Health

My Life, My Care, My Choices - A poem by Vickie Edwards, a resident at Morgantown Health

Read Vickie's poem here.

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(13) I Did it My Way - A poster by Bradford County Manor PEER

I Did it My Way - A poster by Bradford County Manor PEER

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(14) Don't Worry We're Happy - A video by residents from Parma Care

Don't Worry We're Happy - A video by residents from Parma Care

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