THIS HAS JUST GOT TO STOP!

Yes, we’ve just got to put a stop to ageist remarks and attitudes. Like every ‘ism’ ageism unfairly characterizes a group of people because it judges all of these people based on one characteristic: chronological age.

Melissa Harris Perry has a two-hour program on MSNBC on Saturday mornings and I watched it this morning. I like MHP for her political views and her ability to bring a fresh perspective to many social and cultural issues. A remark that Melissa made, which I’m sure was totally unscripted, stunned me. Stunned because her comment was so blatantly ageist.

I’ve reached the point where I can’t just shrug such incidents away. I feel an obligation to address ageism just as emphatically as I would address examples of racism. I wrote the following letter to Melissa. If she responds, I’ll post her response.

Dear Melissa,

This morning you asked a guest to explain to the “75-year-old little old ladies” what a particular sports phrase meant. Please, please do not stereotype people by their chronological age. Ageism is so pervasive and so deeply entrenched in our culture that we do not recognize it. I know you meant no harm and that you did not mean to disparage women 75 – or older. But the term “little old lady” is especially pejorative and reflects a negative bias toward persons based solely on their chronological age.

Senator Dianne Feinstein of California is 80 years old. Would you refer to this woman, or does the Senator deserve to be characterized by anyone as a “little old lady?”

One of the highlights of my leisurely Saturday mornings is to watch your program, Melissa. I have a high regard for the work you do in your position to raise awareness and to critique so many social and cultural issues. Your remark this morning was way out of step with your usual sensitivity to those very issues. I know you understand the power of language to create or change a culture and I implore you to monitor your use of phrases that reflect an ageist attitude.

Thank you so much.

Sister Imelda Maurer

Does the Nursing Home You Visit Sound Like Home?

What sounds do you hear in your home?
Soft music from the CD player or digital cable TV?

Bird songs from the yard?

A dog barking in the distance – or maybe right there in your front room?

Cars passing by?

Children’s exuberance at play next door?

A public address system announcing through amplifiers throughout the house that you have a phone call?

Bells and harsh-sounding alarms going off at any time with no apparent rhyme or reason?
Are those last two probabilities of sounds heard in your home jarring? Such would be a natural response. Of course we don’t want those kinds of disturbances in our home. They shouldn’t be part of the environment either for people who live in nursing homes, or in any community setting that provides aging services. For the last three or four years there has been a growing clamor to remove bed and chair alarms, used all too often under the guise of preventing falls and keeping residents “safe.”
Research – and common sense – reveals that alarms do not keep residents safe and that, far from preventing falls, alarms may increase the risk for falls. As with any restraint, and these alarms ARE restraints, whatever the State Regulators say, every single system in the body is adversely affected as is the emotional and mental well-being of a person fearful of moving lest that *$%@*# noise go off again.

Adding to the harm of such alarms, all too often the common response by poorly-trained staff when an alarm goes off is to say, “Mrs. Johnson, sit down,” rather than try to determine what Mrs. Johnson needs or wants, and then accommodate her needs or preferences.
Progressive nursing homes are eliminating these alarms and realizing that individuals are doing much better and that the number of falls is decreasing. An article in The Patriot Ledger, Quincy, MA just this morning details such a move.

If you want to read this short article and the reasons why alarm restraints are being eliminated, this is the link.

http://www.patriotledger.com/topstories/x863235157/A-GOOD-AGE-Silencing-the-alarms-in-long-term-care#axzz2Ub9TJ5ey

HUGE things happening in the small town of Perham

Much has been written about the documented dangers of prescribing antipsychotic drugs to elders diagnosed with dementia. This off-label use of these powerful drugs are often prescribed to "manage" "behavioral problems." Several of these commonly used drugs have had Black Box warnings from the Federal Drug Administration (FDA) for years. Those warnings include things like increased risk of death, stroke, and heart attack. There are numerous other unpleasant side effects from the use of any antipsychotic.

I have addressed this issue here at this blog several times. If you are new to the topic, those links are provided below. 

But first, hear Marilyn's wonderful success story, a story that reflects good nursing, good doctoring, and a good life for all those blessed to live in a place like Perham Living!

Marilyn wrote this just weeks agoabout the decreased use of antipsychotics at Perham Living in Perham, MN. where she served as Director of Nursing and was highly instrumental in initiating and implementing that nursing home's journey to Culture Change.


Marilyn Oellfke:
We at Perham Living saw a significant impact on the use of anti-psych meds with the implementation of the households. If we think about it, the household model meet all or most of the principles of dementia care: quiet setting of home; no distracting noises like overhead paging; normal conversations; and a routine that is based upon the resident's desires - rise at will, eat when and where the resident wants to, bath when the resident chooses and is ready, etc.


I think the fact that the residents are able to sleep better at night helps also. The resistance to care behaviors we used to see all but went away with the household routine. We went from 17% to 3% use of anti-psych meds and have maintained that rate since 2005. (Emphasis mine.)

We also spent time teaching the nurses not to call the physician with the first sign of behavioral symptoms - often the physician's first response (sometimes with the nurses urging) was a med. They look for the cause of the behavior "what are they trying to tell us" and modify the care plan. We also work with a Geriatric Psych NP who is very conservative when it comes to meds.

We find that it takes residents who are admitted with behavior issues a period of time to adjust - sometimes meds are needed initially - but once the resident is responding, we begin looking at how we can reduce and ultimately eliminate them. The few residents that we do have on meds are R/T a psych diagnosis requiring them.

FYI: Perham Living is a 96 bed skilled facility with 6 household of 16 residents each. We do not have designated memory care areas - all households are safe and prepared to meet the needs of residents with dementia. We have never had a separate dementia care unit and wanted to create a place where all residents could age in place without having to move because of change in diagnosis. It works well for us.


http://www.providencewomen.blogspot.com/2013/01/selling-well-being-in-pill.html

http://www.providencewomen.blogspot.com/2012/12/would-you-give-your-mother.html

http://www.providencewomen.blogspot.com/2012/10/information-about-psychoactive-drugs.html

http://www.providencewomen.blogspot.com/2012/10/are-you-advocate-for-someone-living-in.html

http://www.providencewomen.blogspot.com/2012/08/when-are-antipsychotic-medications.html

http://www.providencewomen.blogspot.com/2009/09/drugs-and-dementia-care-unnecessary.html

Where is Perham Minnesota?

Tuesday’s post noted the meaningful ritual around death and dying at Perham Living, a nursing home that operates with the resident as the center. Not the schedule, not the task, not the staff, the resident. This is the essence of Culture Change. It turns the “normal” ( actually a system that is lethal to staff and residents) way of running things on its head. That’s why a whole new understanding of the role and exercise of leadership is of foremost significance. It too is turned on its head. Really, it’s transformation. Seeing things with new eyes. My goodness, this sounds like Easter! Transformative culture change DOES generate new life for residents and staff! And it is budget neutral!

So where is Perham? It is a small town in western Minnesota. Perham Hospital was originally owned and operated by the Franciscan Sisters of Little Falls, MN. Many years ago the Sisters turned the hospital over to the county who still owns and operates the hospital and the retirement complex.

I visited Perham Living when it was offered as an onsite visit (and 6 CEUs!) opportunity of the 2006 Pioneer Network Conference. The nursing home was five years into it transformation from a mni-hospital model of a nursing home to HOME. An interesting question and even more fascinating answer was part of an interactive discussion period:

“Do you have a short-term rehab program?”

“Yes.”

“How many do you presently have in that program?”

“None presently. However, a very high percentage of individuals who come for short-term rehab choose to continue to live at Perham rather than exercise their option to return home.”

We as a group were pretty amazed. However, it was clear from our tour and conversations that people who live at Perham Living ARE at HOME! That’s the goal!!

A comment from yesterday's blog entry

I enjoyed reading about the dignity quilt and walk of honor that has been established in one nursing home to honor those residents who have died. As a former Department of Health surveyor for long term care, I would often ask the Director of Social Work what was done when a resident passed away. One nursing home places a rose on the pillow of the deceased resident’s bed to honor them. They felt this would be comforting to the resident’s family when they came to their room to pick up their loved one’s personal belongings. A very thoughtful gesture in my opinion.


Cynthia H. Adamowsky, LMSW
Sisters of St. Francis of the Neumann Communities
Director of Aging Services

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Thank you, Cynthia, for sharing your experience. I know how comforting it is for family members and friends of the deceased who come after a death and see that the room is still being honored as a dwelling place, as still holding a special meaning and sacredness.

I have seen other meaningful practices in nursing homes which include – especially in Sisters’ retirement settings – a Scriptural verse or some other signification quotation printed and formatted appropriately and then posted on the door of the recently deceased.

It is so much more sensitive doing things this way rather than the task-oriented approach in which a CNA is assigned the task of clearing the room as soon as the body of the deceased is removed. I have heard of the shock of family members who walk in and find the bed and the room already stripped bare.

Even writing of such a thought-less practice evokes very negative and sad feelings for me. Let’s focus on and implement the actions and practices that reflect thought and sensitivity as well as respect and honor for the deceased, the staff and friends and family members.

Wonderful Things Happening!

Yes, there are wonderful things happening in some nursing homes! The following post is taken from a Web-based group-by-invitation that I belong to. It is a forum open to individuals who have participated in Action Pact’s week-long workshop, “Choreography of Culture Change.”

In this post, Marilyn describes the evolution from awareness to action around the issue of honoring death and dying in a nursing home and supporting those who have lost someone through that death: family members, other residents and staff.

The rituals which which became a tradition at Perham Living reflect staff sensitivity to the reality around them. It reflects a response to “the signs of the times.”

There is no one-size-fits-all in any such significant ritual. What is common in all meaningful practices is the intentional response and value-based philosphy undergirding them. There may be ideas that Marilyn’s article stirs in you. If you have any connection with e! nursing home, you may have experiences of a similar approach. You would enrich us all by sharing them in the comments section or by e-mailing your comments to me so that I can post them. (ilmcdp@yahoo.com)

To the article!
By Marilyn Oelfke former Drector of Nursing at Perham Living, Perham Minnesota

Perham Living began their culture change journey in 2001. As the households evolved, it became apparent to everyone that we needed to find a way to help family members, the other residents in the households and the staff cope with death. We wanted to treat residents with dignity and respect from the time they entered the home until they left. As relationships grew stronger, the loss of a resident was more difficult for everyone to manage. We had tried to find new ways of addressing the need and nothing seemed to be really effective. Until one day when a household lost two long-time residents within 5 minutes of each other. The families, other residents and staff were deeply affected - something needed to be done....It happened that the first resident to pass away had been lovingly called the "jungle nurse" by her family as she had served in the Korean War. We had a quilt in the living room that had a vine quilted around the edge. Someone took the quilt to the room and placed it over the gray zipper bag that the funeral home typically used. Her body, draped in the quilt, was brought to the living room in the household where a brief prayer was said and everyone had an opportunity to share. When we were ready, everyone escorted her out through the town center to the front door to the waiting hearse. Our new tradition was born - each house now has a dignity quilt for use when a resident dies. The "Walk of Honor" is done on all shifts.

The practice was well received in the community of Perham - we heard many positive comments. The hospital adopted the practice as well. They too use a Dignity Quilt and the Walk of Honor when a patient dies. The Funeral Home staff have been very supportive of the practice and give residents, family and staff as much time as they need to say their "goodbyes".

This may not work in all facilities - it happened so naturally out of a need at the moment and everyone was involved in making it happen. It has made a significant difference for those at Perham Living and certainly worth consideration for other households.

We also have Memorial services for residents if the family wishes. One difference is that the service is prepared and done by the residents and staff in the household.

Hand in Hand

This information was provided in an earlier post, but what I alluded to is SO important, I believe, that I want to share it again -- with a special focus on our many convent retirement settings which, because they are not licensed, do not have the same easy access to information from CMS.

I want to share some information with Sisters and lay person who serve our Sistsers  about a marvelous resource, the "Hand in Hand Toolkit". My copy of this resource arrived a couple of weeks ago. After reviewing it, I highly recommend it for use in your retirement setting. Added to this good news is that the resource is FREE to all, available upon request!

The Center for Medicare and Medicaid Services (CMS) has created this training tool that emphasizes person-centered care in the care of persons with dementia. There are six modules, each one hour in length, four of which relate to dementia and caring for residents living with dementia. The two remaining modules deal with the recognition and prevention of abuse.

The Patient Protection and Affordable Care Act (commonly called Obamacare or the federal healthcare law) mandates that licensed nursing homes provide CNAs regular training annually on caring for residents with dementia and on preventing abuse. Licensed or unlicensed, the information contained in this resource is vital information for caregivers and for those who act as family members to our Sisters in the retirement setting.

The two-inch thick manual provides step-by-step guidance (like a teacher’s manual!) for effective presentation of each of the six modules. Suggested teaching materials are also included and can be duplicated for each participant trainee.

There is a very helpful glossary and a rich resource section in the Toolkit.

Karen Schoeneman, a major player in the development of resident-centered regulations at CMS and Dr. Al Power, author of the outstanding book, DEMENTIA BEYOND DRUGS, each give a short audio-visual introduction, and overview on the first of the DVDs included.

This is how you request this FREE, EXCELLENT resource: go to this link:

http://www.cms-handinhandtoolkit.info/Downloads.aspx

(Enter the name of your convent or the name of your retirement center for “facility”.)

I encourage you to forward this letter to any appropriate parties, to request a copy of this valuable resource, and encourage your team in the retirement center to engage in the use of this excellent training. Our elder members as well as our devoted staff will be the beneficiaries.

I got a letter the other day from the government that I want to share with you.

Now I know that perhaps the cynical among you will think that I’m sending this with a smirk. Actually I’m not. Actually I’m sharing it with the same sense of enthusiasm that I experienced when I read it. The letter came with a resource offered by CMS entitled “Hand in Hand” which is available FREE OF CHARGE to anyone who requests a copy. Information about how to request this excellent resource is included in the letter.
The letter that follows will be of great interest to anyone who works in a retirement setting, licensed or unlicensed, or for anyone who knows someone living in a retirement center, licensed or unlicensed. This is because in reading the letter one sees that the government agency that sets the minimum standards of care in nursing homes, in this letter, makes clear that it is the individual elder who comes first, not the task, not the paperwork, not staff convenience or efficiency. CMS refers to this aspect of standards of care as person – centered care. Note the entire paragraph in which person – centered care is described and defined.

CMS also makes clear that if person – centered care is adopted as a philosophy in a nursing home, organizational changes will be called for. We can’t keep doing the same things the same way and just say we have person – centered care. We can’t keep using the same words and say that we have person – centered care. One word that comes to mind is “compliant.”

The letter is from the Department of Health and Human Services, within the Center for Medicare and Medicaid services (CMS) and I quote it here in its entirety.



Dear Nursing Home Administrator:


Section 6121 of the Affordable Care Act requires the Centers for Medicare and Medicaid Services (CMS) to ensure that nurse aides receive regular training on caring for residents with dementia and on preventing abuse. CMS created Hand in Hand, the training you are receiving today, to address the annual requirement for nurse aide training on these important topics.

Our mission is to provide nursing homes with one option for a high – quality program that emphasizes person – centered care in the care of persons with dementia and the prevention of abuse. The Hand in Hand training materials consist of an orientation guide in six one – hour video – based modules, each of which has a DVD and an accompanying instructor guide.

Person – centered care is an approach to care that focuses on residents as individuals while also emphasizing the role of the caregivers working most closely with them. It involves a continual process of listening, trying new approaches, seeing how they work, and changing routines and organizational approaches in an effort to individualize and de – institutionalize the care environment. Person – centered care is at the heart of the Hand in Hand training.

Consistent staffing, empowering nurse aides, making person – centered care a team commitment, and building relationships, you and your staff will be able to better understand and respond to residents’ needs. These practices may also play a role in preventing abuse by helping caregivers put themselves in the shoes of residents, understand residents’ actions, look at their own actions, and know themselves and their limits.

Implementation

Though Hand in Hand is targeted to nurse aides, it has real value for all nursing home caregivers, administrative staff, and others. For this training to be most effective, it is important to choose a team approach to training. Hand in Hand asks nursing home administrators to educate, empower, and create an environment of person – centered care with an emphasis on a team approach and building relationships.

Person – centered care is about seeing the person first, not as a task to be accomplished or a condition to be managed. It is the fulfillment of the Nursing Home Reform Law (1987) to consider each resident’s individual preferences, needs, strengths, and lifestyle in order to provide the optimum quality of care and quality of life for each person.

While annual training for nurse aides on dementia care and abuse prevention is required in current nursing home regulations, we do not require nursing homes to choose Hand in Hand specifically as a training tool. Many other excellent tools and resources are also available.

Thank you for your commitment to utilizing available materials such as Hand in Hand for the required annual training for nurse aides. We anticipate that these enhanced training programs will enable you to continuously improve dementia care and abuse prevention, as well as resident and caregiver satisfaction in your community.

For information to download the training modules or inquire about replacement copies of the Hand in Hand Toolkit please visit http://www.cms-handinhandtoolkit.info/Index.aspx

Sincerely,

Patrick Conway, M.D., MSc
CMS chief medical officer
Director, CCSQ































































http://www.cms-handinhandtoolkit.info/Order.aspx

Selling well-being in a pill

The title here is not original. I wish it were! The phrase comes from Al Power, M.D., author of DEMENTIA BEYOND DRUGS. This morning the St. Louis Post-Dispatch carried an article about research being done at St. Louis University (SLU) to study the effects of Ritalin on persons living with Alzheimer’s. I read the article amidst several mental alarms going off.

Source of one alarm: persons living with Alzheimer’s,  according to their family members, often display apathy, social withdrawal, loss of enthusiasm and indifference. Alarm: what might be some underlying causes of an apparent emotional change? Other medications? Bcoming depersonalized via an institutional task-oriented nursing home environment? Boredom? Lonliness?The sense of losing one's self in the institution?

Never fear, help is on the way! No need to reflect or investigate external stressors. A pharmaceutical company paid this SLU MD/professor $ 183,540 to see if their product might be just the right intervention, “well-being in a pill.” Oh, another thing, this same company, according to the article paid the professor $28,000 in 2010 to speak to other physicians about its products. Hmmmm.

In his book, Powers points out that all of the research done on the use of antipsychotics for persons living with dementia were funded by --- guess who --- yep, pharmaceutical companies.

Second alarm. This logic is presented by the SLU physician-researcher in this morning’s article: if a person is depressed, s/he is less focused on the environment and therefore at greater risk for falls. So if individuals have “greater energy” they will be more focused on their environment and less likely to fall. Pass the pills!

I wrote to Dr. Power about this article and asked his opinion. He wrote back saying that there has been some benefit in the use of Ritalin for depression, “but it's not well-studied, and it begs the question of whether we just continue to try and sell well-being in a pill.”

Dr. Power has a blog which can be found at www.changinganging.org. In a recent post, Power states succinctly the misplaced role of drugs for persons living with dementia in typical nursing homes. He says this: “The bigger issue is the inability to realize that much distress comes from our institutionalized, dehumanized approach to care for people with dementia. The real problem lies not so much with one particular class of drugs, but rather the idea that ANY pill is the solution to unmet needs or environmental stressors." (Emphasis mine.)

If you have not read DEMENTIA BEYOND DRUGS, you're missing a whole new world of understanding of dementia and a world of hope beyond its too-often-prescribed drugs.

“If You Change Your Words You Can Change the World” or “Never Say ‘Pet Therapy’”

Imagine you are returning home from a day’s work, from a trip, or from the grocery story. You have a pet at home – a dog we’ll call Lucy. You know what to expect when Lucy sees you: Lucy’s tail begins to wag energetically. She may bound up to you and wants to lick your face. You automatically reach down to pet her, to receive her unconditional love, her pure doggie affection. You automatically smile and even chuckle a little over this creature in your life, this creature who affords such delight by her very being, such company and comfort.

Now step back mentally from this image. Would you use the word “pet therapy” to describe the effect on you of Lucy’s warm greeting and presence? Would you describe Lucy to others as your therapy dog?

What do we mean when we use the word ‘therapy’? A quick Internet search surfaced these definitions.

--“Therapy” the treatment of disease or disorders, as by some remedial, rehabilitating, or curative process: speech therapy.

-- Therapy is the action taken to begin a healing process.

-- Therapy is a session where (sic) a health professional aims to provide remedial or compensatory strategies and treatment to improve a participant’s function or well-being. It may first involve assessment of needs, then planning of goals, treatment and finally, review of progress / success of treatment.

What all the definitions have in common, and what we also instinctively conclude when we hear or use the word ‘therapy’, is that it is an approach to addressing a deficit, a treatment to cure an illness, to bring health in place of a lack of it. It is a medical term.

Many nursing homes and assisted living communities have pets who live in ‘the community, and/or pets that are brought in on occasion. That’s a good thing! What is not so good in the vast majority of these circumstances is that the pets are labeled “therapy dogs” or “therapy cats”.

In these circumstances the ‘therapy dogs’ “help combat loneliness, helplessness and boredom among seniors at nursing care centers by offering sensory stimuli and a way to give and receive affection.” (Source is at link below. Accessed January 15, 2013.)

Is this how you or I view the impact our pets have on us? You get it, don’t you. In such labeling, we are medicalizing a human experience. We are medicalizing the normal human activities of interacting with another creature, a pet. We are also revealing the fact that our view of our residents is not holistic but medical.

In the movement of transformational culture change in which the nursing home moves from INSTITUTION to HOME, pets are seen, experienced and described for the wonderful creatures they are, for the gift they give to all of us. You know, just like you and I experience our pets at HOME.

We make changes in our practices and in our concepts by changing our words. Let’s use words that express what we really intend. The delight, the company, the gift of domesticated animal creatures living in or visiting our home is “pet”. Period.

Read about therapy dogs at
http://wcfcourier.com/lifestyles/resident-therapy-dog-brightens-seniors-days/article_ef0657bf-2ef1-5839-913c-7995251a3f7a.html

A Christmas Message

LeadingAge offers a daily news clipping service as one of its membership benefits. So each day I get an e-mail with links to a half dozen or so current news articles that relate to aging and aging services. This morning one of the articles is from an article originally in The Boston Globe, but quoted from the San Francisco Chronicle. The article is about lack of enforcement for inappropriate use of antipsychotics on nursing home residents in Massachusetts, particularly those living with dementia. It's not a happy Christmas Eve message, but one that too often is found in newspaper and journal articles -- reflecting a tragic reality for too many elders in our country.

I quote just one sentence here, but include the link to the article also:

“A few reports detailed cases when residents were so overmedicated

they were unable to open their mouths to eat or do much but sleep.”

I venture to say that in too many “typical” traditional nursing homes it would not be unusual for a visitor to observe one or more residents at the dining room table so sedated that it was difficult for staff to assist him/her with the meal. Do we just smile such scenes away with some misguided, “sweet” myth that elders just sleep more?

Federal and State regulations forbid use of antipsychotics for the “treatment” of “behaviors” for good reason. Such use does not address the issues at hand, does damage to the resident physically and psychologically and is a cruel imposition of “treatment” – fierce and deadly chemical restraints – on helpless individuals. It is abuse clear and simple and must be stopped.

Not a pleasant message to post on Christmas Eve. However I am reminded of Howard Thurman’s message, “The Work of Christmas.” I offer it here. We must do what we can to “heal those broken in spirit” and to “radiate the Light of Christ . . . in all that we do

When the song of the angels is stilled,

when the star in the sky is gone,

when the kings and princes are home,

when the shepherds are back with the flocks,

then the work of Christmas begins:

to find the lost,

to heal those broken in spirit,

to feed the hungry,

to release the oppressed,

to rebuild the nations,

to bring peace among all peoples,

to make a little music with the heart…

And to radiate the Light of Christ,

every day, in every way, in all that we do and in all that we say.

Then the work of Christmas begins.

Newspaper article quoted can be accessed at:

http://www.sfgate.com/news/article/Report-Mass-rarely-nixes-nursing-home-sedatives-4141901.php

“Would you give your mother . . . ”

Later today the Missouri Quality Improvement Organization is providing a webinar for those involved in long-term care. The topic is antipsychotic medication use in the elderly. The phrase that I have used as the title of this post heads one of the slides for this presentation and goes on to list the serious negative side effects of all categories of antipsychotics. It’s scary, really to read all the side effects in one place at one sitting.

A few thoughts come to mind about this. When antipsychotics are used to “treat” “behavioral issues” as a result of dementia, the drugs don’t work! The drugs don’t address the “cause” of the “behavior.” So in addition to not working, the resident living with dementia suffers a myriad of negative side effects, not the least of which includes strokes and as much as a 1.7 fold increased mortality.

My second thought: no, I would not give that to my mother. Who would, really, if one is informed about these issues. This surfaces the importance of being fully informed. Within birth families, when a parent begins to show signs of increased frailty or cognitive disabilities, the adult children are often bewildered. It’s all a new experience; they have little or no knowledge of the aging process or of the avenues of appropriate services that can and should be provided. Often times, there is an admission that when the second parent needed more services, the adult children were more knowledgeable and comfortable in providing them or seeing that they were provided. The adult children have through their previous experiences become informed about appropriate issues: aging process, medications or other treatments, and how to make a decision of informed consent in keeping with the wishes of the parent.

And thirdly, for those of us who live in communities of Religious Institutes, we shouldn’t feel so flustered. Seeing our mentors, our congregational giants, and our friends move along this path, it is not so new to us. With our experience, with our growing knowledge of the intricacies of aging, normal or with more chronic disorders, we should be able – in a very informed way – to companion our Sisters wisely, gently, compassionately and competently.

"An Encore Presentation" -- Lee Chung Hi

This entry was posted originally on August 10, 2008. I have put it here 'at the top' of my blog again because the story, told by Steve Shields, is so profound; because the story is so well-written; because the description of "traditional" nursing home care is so heart-breaking when viewed from the humanistic, holistic view of culture change; because the story has such a wonderful, inspiring ending for all of us in service to elders.

--- "In screaming, Lee Chung Hi had used her only tool for hanging on to herself…" ---

Original post:  August 10, 2008:
This blog entry is longer than most of mine. The sacredness, poignancy and deep symbolism of the story that I excerpt here, however, merits its telling. It's a story of a woman with courage, reaching out in the only way left to her, and of an exceptional leader who trusted his gut instincts about his nursing home which kept telling him: 'It can be better. We must make it better.'

The author of the events recounted in the story that follows is Steve Shields, CEO of Meadowlark Hills, a nursing home, in Manhattan, Kansas that Steve guided from "traditional" nursing home to "home", an ongoing journey. I know Steve. He is an effective, professional executive, a leader with qualities stretching across the four types of leadership: intellectual, reformist, revolutionary and charismatic. (For more information about these types of leadership, see Sister Joan Chittister's address at the 2007 LCWR Assembly when she was presented with the Outstanding Leadership award.) Steve's actions flow from a profound faith and contemplative spirit.

I direct you to the book, quoted here, (co-written with LaVrene Norton another faith-based driven advocate for our frail elders). In Pursuit Of The Sunbeam: A Practical Guide To Transformation From Institution To Household. Published by Action Pact Press, 2006.


FROM CHAPTER ONE: 'The Way It Is."

"She screamed for years but nobody ever really heard it until she stopped. It was a shrill, penetrating, constant and unsettling shriek; a noise not readily identified as human. Words were not part of it. She could not form them. Instead, it was the cry of a trapped and desperate animal hoping someone could hear and understand. The howl haunted the nursing home corridors like a shackled ghost intent on settling its business, belying that the source of the sound was less than five feet tall, not even 90 pounds and unable to walk.

Her Asian skin was healthy and beautiful. The Meadowlark Hill staff moistened it with lotion, turned her at night and positioned her at specified intervals. Lee Chung Hi lived year after year, perched in a reclining Geri-chair. It kept her safe and in place. Her graying black hair was brushed and shining. Vital signs were monitored with regularity and her care-plan was carefully executed. She was bathed on schedule at three 'clock on Tuesday and Friday afternoons. By all valued and applied measures in long-term care, she was well cared for. In the nursing notes, and in the minds of all who cared for her, the never-ending screams were the result of dementia . . . an illness of the mind, which surely must have caused her initial placement. But then nobody remembered for sure.

The other residents were routinely lined up outside the dining room to wait for lunch. Lee Chung Hi ate alone in her chair, parked in the corridor farthest from where people gathered. Nobody – residents, staff or visitor – wanted to be near her. Caregivers attended to her dutifully, yet her noise repelled them. She ate alone, sat alone and slept alone.

She became her noise in the eyes of everyone. But nobody could hear her screaming for what it truly was. It never occurred to us that we might be the cause of it – we, who carry out the biddings of a system lethal to the human spirit.

Years passed before we finally understood it. And not until we transformed Meadowlark Hills into a vibrant household community and witnessed Lee Chun Hi's parallel transformation did we realize how profoundly appropriate her screaming had been in response to the dehumanizing conditions in which she lived."


FROM CHAPTER SIX: "The Essential Elements of the Household Model"

"I rang the doorbell and Susan, a household employee, answered the door and welcomed me in. I saw a warmly furnished living room and an adjacent kitchen and dining room; all appointed like any other home in America. The residents, an average of sixteen per household, had moved in less than two weeks before.

The signs of home were already visible amid what previously had been public corridors, cramped bedrooms and large public gathering rooms. The institutional odor was gone. My stomach growled in response to the smells of breakfast floating from the household kitchen. The previous set of monotonous unit style chairs, tables and other office-like trappings had gone to the auction block to make way for more cozy furnishings.

People were visiting with one another and, in stark contrast to the dismal scene of slumping, slumbering elders once parked at the now-dismantled nurses' station, a more inspiring dance of life unfolded. My heart warmed with hope.

But all the blossoming signs of home faded into the background when my eyes found Lee Chung Hi, the lady who screams. She had abandoned her Geri-chair and was sitting comfortably at the dining table, just as my wife had sat at our kitchen table when I left home for work that morning.

It was the first time I had seen Lee Chung Hi when she wasn't screaming.

She was smiling. Her eyes locked with mine, conveying a warmth of well-being that sent me into a suspended sense of time and place. All I could see was her warm smile and radiating eyes of peace, and I felt myself walking toward her as if in slow motion.

I stopped near her table. With her hands at her side, she bowed her head slowly forward and then back up, all the while continuing her smile. This gesture of greeting and respect, practiced in her culture yet universally understood, enveloped my whole being. I found myself returning the gesture in full communion. I was able to return eye contact and nod in mutual affirmation before emotion overtook me.

Her years of screaming, contrasted with the moment we had just shared, represented to me everything we must leave behind and everything we must achieve. The glaring reality was that she hadn't screamed for years because she was sick, but because we were.

In screaming, Lee Chung Hi had used her only tool for hanging on to herself rather than giving in to vacant slumping. She was a fighter -- a screaming indictment of the traditional nursing home system and proof in the pudding that we can overcome; that we have a moral imperative to do so."

Does Honoring all Creation Include Having Pets Live in our Homes?

Texas LeadingAge has a short article in this Friday’s e-newsletter entitled “Senior Care Center Sees the Power of Pets.” A not-for-profit nursing home in the greater Dallas area is featured. Mary Poole, Director, attests to the physiological and psychological benefits that pets bring to the residents who live in her center. The video is 2 ½ minutes long and is worth watching.

Viewer advisory: there are scenes of residents lined up in chairs totally unengaged, and there are some “slumpers.” Not the reality we want to see in today’s nursing homes. However the scenes with the pets are replete with LIFE!

For those of us who profess a strong adherence to Creation Spirituality, does that conviction extend to four legged furry creatures that bring such life by their very presence?

Granted, any pet living in a more-than-one household must be a good community member. Not every cat or dog is suitable for a nursing home. Personality, temperament and adaptability are important factors. But beyond that, what is the sticking point in so many retirement centers that prohibit the ongoing, in-house presence of pets as part of everyday-life?

Comments anyone? Any great in-house pet stories to share? See "Post a Comment" below.

Here is the link to the video:    Senior Care Center Sees the Power of Pets

When an Older Adult is Hospitalized

One journal that I always look forward to receiving in the mail is Caring for the Ages from the American Medical Directors Association. The current issue, October 2012, is chuck full of great articles. I write about only one of them here.

When an elder is hospitalized, there is a high risk for the onset of delirium. Delirium was once perceived as a short-term, transient cognitive disorder. Now there is increasing evidence that delirium carries longer-term effects on cognitive function.

Studies which show such results highlight the importance of “proactive interventions” to prevent delirium and to lessen its impact if and when delirium is diagnosed. One highly recognized program that addresses this very issue is the Hospital Elder Life Program (HELP).

The website for that program is this: http://www.hospitalelderlifeprogram.org/public/public-main.php

I encourage readers to access that website for the valuable resource that it is.

On the left side of the HELP homepage, you will find numerous helpful links. For anyone who is responsible as a family member for an elder, click on the “Older Adults/Caregivers” link near the top of that long list of links on the left. There is a wealth of information there for the elder and for the caregiver.

As a corollary to this topic of delirium, I’m reminded of some writings of Jerald Winakur, MD, a geriatrician in San Antonio, Texas. Dr. Winakur-- speaking both as a geriatrician and a son who cared for his elderly father – says again and again that an elder should never be left alone the first night s/he is in the hospital.

Good reading for good advocates! Carry on your noble work!

Information about Psychoactive Drugs

Yesterday I posted an article about antipsychotic drug use on our elders in nursing homes. Today I post this table for your use. It is a list of all the drugs that CMS looks for in reporting on usage of antipsychotic drugs in nursing homes.

 

You can Google the name of any drug here and learn much more about that drug's intended (on label, FDA-approved) use and its side effects.

 

DRUG	On Label Use	Trade Name(s)
Clozapine	Schizophrenia	Clozaril, Gen-Clozapine
Haloperidol Deconate	acute psychosis, schizophrenia, and Tourette's syndrome	Haldol
Droperidol	Used as an antiemetic and antipsychotic. Droperidol is also often used for neuroleptanalgesic anesthesia (a state of quiescence) and sedation in intensive-care treatment	Inapsine, Droleptan, Dridol, Xomolix, Innovar
Loxapine	Loxapine is used to treat the symptoms of schizophrenia	Loxitane
Thioridazine	Thioridazine is used to treat the symptoms of schizophrenia	Mellaril
Molindone	Molindone is used to treat the symptoms of schizophrenia	Moban
Theothixene	Thiothixene is used to treat the symptoms of schizophrenia	Navane
Olanzapine	is used to treat the symptoms of schizophrenia	Zyprexa
Pimozide	Pimozide is an atypical antipsychotic drug used to treat serious motor and verbal tics associated with Tourette's syndrome	Orap
Fluphenazine Deconate	An antipsychotic medication used to treat Schizophrenia. It is a highly potent behavior modifier with a markedly extended duration of effect.	(This is an injection medication.)
Fluphenazine	Fluphenazine is an antipsychotic medication used to treat schizophrenia and psychotic symptoms such as hallucinations, delusions, and hostility.	Prolixin, Permitil
Quetiapine	Quetiapine tablets and extended-release (long-acting) tablets are used to treat the symptoms of schizophrenia	Seroquel
Risperidone	Risperidone is used to treat the symptoms of schizophrenia	Risperdal
Mesoridazine	Mesoridazine is a neuroleptic drug used in the treatment of schizophrenia.	Serentil
Promazine	An older medication used to treat schizophrenia.	Sparine
Trifluoperazine	Trifluoperazine is used to treat the symptoms of schizophrenia	Stelazine
Chlorprothixene	Chlorprothixene's principal indications are the treatment of psychotic disorders (e.g. schizophrenia) and of acute mania occurring as part of bipolar disorders.	Cloxan, Taractan, Truxal
Chlorpromazine	Chlorpromazine is used to treat the symptoms of schizophrenia	Thorazine
Acetophenazine	Acetophenazine is an antipsychotic drug of moderate-potency. It is used in the treatment of disorganized and psychotic thinking. It is also used to help treat hallucinations or delusions.	Tindal
Perphenazine	Perphenazine is used to treat the symptoms of schizophrenia	Trilafon
Lorazepam	Lorazepam is in a group of drugs called benzodiazepines and is used to treat anxiety disorders. Includes	Ativan
Oxazepam	Oxazepam is used to relieve anxiety, including anxiety caused by alcohol withdrawal	Serax
Prazepam	Prazepam is indicated for the short term treatment of anxiety.	Centrax
Diazepam	Diazepam is used to relieve anxiety, muscle spasms, and seizures and to control agitation caused by alcohol withdrawal.	Valium, Valrelease
Clonazepam	Clonazepam is used alone or in combination with other medications to control certain types of seizures. It is also used to relieve panic attacks (sudden, unexpected attacks of extreme fear and worry about these attacks).	Klonopin or Klonapin
Hydroxyzine	Hydroxyzine is used to relieve the itching caused by allergies and to control the nausea and vomiting caused by various conditions, including motion sickness.	Vistaril, Atarax
Halazepam	Halazepam is indicated for the treatment of anxiety.	Alapryl, Pacinone
Chlordiazepoxide	Chlordiazepoxide is used to relieve anxiety and to control agitation caused by alcohol withdrawal.	Angirex, Elenium, Klopoxid, Librax, Libritabs, Librium, Mesural, Multum, Novapam, Risolid, Silibrin, Sonimen and Tropium.
Aripiprazole	Aripiprazole is used to treat the symptoms of schizophrenia	Abilify
Alprazolam	Alprazolam is used to treat anxiety disorders and panic disorder	Niravam, Xanax
Amoxapine	Amoxapine is used to treat depression.	Asendin
Nortriptyline	Nortriptyline is used to treat depression	Aventyl, Pamelor
Wellbutrin	Wellbutrin is used to treat depression. Bupropion is also used to treat seasonal affective disorder	Buproprion
Trazodone	Trazodone is used to treat depression	Desyrel, Oleptro
Venlafaxine	Venlafaxine is used to treat depression.	Effexor
Amtriptyline	Amitriptyline is used to treat symptoms of depression	Elavil, Endep, Vanatrip
Lithium	Lithium is used to treat and prevent episodes of mania (frenzied, abnormally excited mood) in people with bipolar disorder (manic-depressive disorder; a disease that causes episodes of depression, episodes of mania, and other abnormal moods).	Eskolith, Lithobid
Maprotiline	Maprotiline is used to treat depression, bipolar disorder (manic depressive disorder; a disease that causes episodes of depression, episodes of mania, and other abnormal moods), and anxiety.	Ludiomil
Isocarboxazid	Isocarboxazid is used to treat depression in people who have not been helped by other antidepressants	Marplan
Phenelzine	Phenelzine is used to treat depression in people who have not been helped by other medications	Nardil
Serzone	Nefazodone is used to treat depression.	Nefazodone
Desipramine	Desipramine is used to treat depression.	Norpramin, Pertofrane)
Tranylcypromine	Tranylcypromine is used to treat depression in people who have not been helped by other medications.	Parnate
Paroxetine	Paroxetine tablets are used to treat depression, panic disorder and social anxiety disorder	Paxil, Pexeva
Fluoxetine	Fluoxetine is used to treat depression, obsessive-compulsive disorder, some eating disorders, and panic attacks	Prozac, Sarafem, Fontex
Sertraline	Sertraline is used to treat depression, obsessive-compulsive disorder, panic attacks, posttraumatic stress disorder, and social anxiety disorder	Zoloft
Doxepin	Doxepin is used to treat depression and anxiety.	Sinequan, Adapin, Silenor
Imipramine	Imipramine tablets and capsules are used to treat depression	Tofranil
Protriptyline	Protriptyline is used to treat depression.	Vivactil
Flurazepam	Flurazepam is used to treat insomnia	Dalmane
Quazepam	Quazepam is used to treat insomnia	Doral, Dormalin
Estazolam	Estazolam is used for the short-term treatment of insomnia	ProSom
Temazepam	Temazepam is used on a short-term basis to treat insomnia	Restoril
Triazolam	Triazolam is used on a short-term basis to treat insomnia	Halcion
Zolpidem	Zolpidem is used to treat insomnia	Ambien, Edular, Intermezzo, Zolpimist

 

 

 

 

 

 

 

 

 

 

Are you an advocate for someone living in a nursing home?

Are you an advocate for someone living in a nursing home? Are you a medical power of attorney for someone living in a nursing home? If so, please read this. You cannot advocate well for someone until you are well informed about standards of care. Of course this is true whether the nursing home is licensed or unlicensed, as is the case with many Sisters who receive skilled nursing care at "home."

Did you know that across our country almost one of every four nursing home residents is on an antipsychotic medication? In the majority of cases, these drugs are prescribed for elder residents who are living with dementia. These antipsychotic drugs given to persons living with dementia are being prescribed "off label." This means that the drug, approved for a particular use (psychosis, depression, etc) is being used for another purpose: to eliminate "problem behaviors."

All too often in retirement settings, persons living with dementia are seen as "having behavior problems, difficult, non-compliant, hostile, aggressive" and on and on all because staff is not trained to understand that all behavior is meaningful, and that the "problem" is not with the resident, but with the staff not yet able to understand the message or need the resident is attempting to convey. Such understanding takes time and a genuine knowledge of the resident. Thus the call for consistent assignment of those providing care.

The quick answer to "problems" in too many nursing homes is use of antipsychotic medications which, among other things, can so sedate a resident that the "problem" seems to be taken care of. Of course there are so many negative outcomes from such abusive use of powerful drugs. There are negative outcomes to every system in the body in addition to the side effects of these powerful drugs. I encourage you to Google the name of any drug below, for example, and learn its side effects.

Several years ago the Federal Drug Administration (FDA) issued a Black Box Warning in the case of several antipsychotic drugs when they are used off label for older adults with dementia. Those drugs include the following: Tinclude Compazine (prochlorperazine), Haldol (haloperidol), Loxitane (loxapine), Mellaril (thioridazine), Moban (molindrone), Navane (thithixene), Orap (pimozide), Prolixin (fluphenazine), Stelazine (trifluoperazine), Thorazine (chlorpromazine), and Trilafon (perphenazine).

Newer drugs that continue to carry the black-box warning include Abilify, Clozaril, FazaClo, Geodon, Invega, Risperdal, Seroquel, Zyprexa, and Symbyax. Source of information (accessed Oct. 9, 2012): http://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/Downloads/AntipsychoticMedicationQM.pdf
The Center for Medicare and Medicaid Services (CMS) reports that information covering March through December of 2011 reveal that the national average among nursing home residents who received at least one antipsychotic was 23.9%. CMS has begun an initiative to reduce this usage rate by December 31, 2012.

To emphasize the importance of correcting the abuse of overprescribing antipsychotics for nursing residents living with dementia, CMS has added this topic as one of its Quality Measures (QM). These Quality Measures are found on the CMS Nursing Home Compare website for consumers to do precisely that --- compare nursing homes based on certain quality measures. This measure will be show for nursing home inspection reports made beginning in July, 2012.
(Go to http://www.medicare.gov/NursingHomeCompare/)
As an advocate, ask questions if a doctor or nurse suggests that an antipsychotic drug is advised. What questions should you ask:

1. For what medical issue is this drug being prescribed?
   If the 'medical issue' is really what they call a 'behavior' such as agitation, restlessness, anxiety, etc. be very, very wary. This is the very abuse CMS is addressing in their new initiative to reduce the use of antipsychotics.

2.    Are there alternative ways to treat this medical issue?
3.    What are the benefits of this medicine?
4.    What are the risks of taking this medicine? (What are the side effects?)
5.    How long will the treatment last? (How long will the person be on this medicine?)
Only when you have all this information are you qualified to weight all the facts and then to give informed consent for the treatment to proceed, or informed refusal for that treatment too proceed. The resident, and you, on behalf of that resident if s/he cannot speak for him/herself, has the right to choose or to refuse treatment.