Elder Fraud & Abuse
Good news abounds in Harrison, Arkansas, and a 5th grader is the one who set this story in motion.
Ruby Kate Chitsey spends lots of time in nursing homes because her mother is a nurse practitioner and Ruby Kate loves to join her mother while she’s at work. Ruby noticed something at nursing homes that wasn’t getting the attention she felt it deserved. Wait until you read this brief story about how this young girl took charge of making life in nursing homes better for those who live within.
Goodness abounds, yes, it does.
We don’t hear or read about it enough but trust me, hatred and evil have got nothing on goodness and kindness in our world.
It has been said that it is the horrific stories that make headlines and quite frankly, that is true. Newspapers, magazines, television and social media news outlets clamber after Breaking News in their attempts to be the first to offer their take on ongoing incidents. Clamber means to “climb, move, or get in or out of something in an awkward and laborious way.” Can’t you visualize hungry journalists doing just that: pushing others out of the way, pulling yet others down in their singular effort to be first?
I am all for free journalism; without it I would not be writing this 990th post, so bring it on in all its raging color…however, wouldn’t it be rewarding to have our day interrupted by Breaking News that reports on the good and kind incidents that occur as well?
All right, I’ll do just that. Allow me to introduce you to two wonderful souls who have brought light into the darkness. This is Breaking News of the very best kind.
Sophie Andrews is a person who learned the hard way – one of the hardest – that The best way to help is often just to listen. Sophie was on death’s door – you have to listen to the 14-minute TED talk to learn of the details when a volunteer at UK’s Samaritan helpline picked up the phone and changed 14-year old Sophie’s life forever. Years later, Sophie gave back and paid it forward by starting a helpline for some of the most vulnerable human beings in society who are lonely and without access or means for socialization. Her Silver Line fields more than 1500 calls a day, making the lives of more than 550,000 UK senior citizens brighter, fuller and healthier each year.
Dixon Chibanda, one of 12 psychiatrists in the entire country of Zimbabwe – a country of 16 million people – created a program to treat individuals in need of psychiatric or psychological counseling: The friendship bench program – or why I train grandmothers to treat depression. This program was birthed when a desperate young woman didn’t have the minimal bus fare needed to commute the 15 kilometers to meet with him in person and who suffered the tragic consequences. Dr. Chibanda created a program that brings care and hope to those in need powered by a limitless resource: grandmothers. Sitting on a bench, talking to someone who listens without judgment serves to make a difference in the mental health of thousands across his country and other countries as well – including the United States where a similar program has been started. Please take 12 additional minutes out of your day and listen to the TED talk I have linked above.
Listening – a free resource that is oftentimes not employed when needed the most; listening that actively tunes into the person speaking.
If you are someone who sets resolutions or intentions for the new year, perhaps practicing the art of listening might be at the top of your 2019 list.
I know it is on mine.
- My first job in this industry was in the corporate office of a very fine assisted living and memory care company. In time, I decided to work in one of the company’s facilities so I could spend more time with the residents and families who chose our company for their LTC needs;
- When I left the company, I took several years off to care for my father who had Alzheimer’s disease. A few years after his death, I became a certified long-term care ombudsman for the State of Washington – an advocate for vulnerable adults living in LTC settings;
- Concurrent with my ombudsman work I became a trained Alzheimer’s Association caregiver support group facilitator, providing a listening ear to those on the caregiving path.
Given all that experience, I’ve seen and heard of many unfortunate and nasty occurrences where residents and patients were denied the basic rights each living person should expect to receive, especially those dependent on others for their well-being and quality of life.
I’m sorry to say that some nursing homes, assisted living/memory care communities, and adult group homes do not employ sufficient staffing to meet the needs of their residents. I can confidently say that the government agencies that oversee the LTC industry are also understaffed. When complaints are called in, those government employees have to apply grease to the squeakiest wheels and must turn their fire hoses on the most out of control fires in their case files.
That’s where you and I come in.
We must be the squeakiest darn wheels we can be so our complaint(s) are attended to.
We also need to be the hottest, most devastating fire imaginable so that our vulnerable loved one’s rights are respected.
Nursing home call lights are being ignored so that residents/patients are left to defecate and urinate in their adult sanitary garments on a routine basis. Not only is such an act demeaning to the poor soul with no option but to let go of his/her bodily wastes, but said wastes are sure to cause skin breakdown and a urinary tract infection that is not only extraordinarily painful but can also be life-threatening.
What does the family member/good friend do about this indignity? They need to complain vehemently to the administrator of said facility and when she/he does nothing or very little, family and friends contact the local area’s LTC ombudsman program. This website will direct you to ombudsman resources right where you live: National Long-Term Care Ombudsman Resource Center.
Your local ombudsman program will investigate, work with the facility’s staff, and if need be, get the full force of the law to come to the defense of those in need. State ombudsman programs are staffed by paid and volunteer employees, therefore their staffing levels are usually higher than many government agencies. These ombudsmen all receive the same extensive training required for such a vital role. Once you’ve reached a dead end at the facility, ombudsmen are your most active line of defense. They are passionate about what they do and they will ceaselessly advocate for you and your loved ones. Their proximity to appropriate resources and their intimate knowledge of residents’ rights laws makes them an approachable and viable alternative for the common man’s (yours and my) needs. Caveat: if you suspect criminal activities such as physical or sexual assault law enforcement needs to be immediately involved in the matter. Additionally, severe lack of care that endangers the lives and well-being of adults more likely than not will also require law enforcement involvement.
Adults in long-term care settings are a reflection of you and me. By that I mean they were once active and self-reliant adults, just like many of you reading this piece, but they now find themselves unable to fend for themselves and need you and me to step in for them. Imagine, if you will, being in their shoes, unable to speak up for yourself. If you or I ever find ourselves in a similarly vulnerable situation, wouldn’t you want an advocate to step in on your behalf?
Advocacy for vulnerable adults falls on all of our shoulders. You can make a difference in the life of your loved one. Won’t you please step up to become their most important advocate?
September is World Alzheimer’s Month. READ THIS ARTICLE CAREFULLY TO DISCOVER HOW YOU CAN WIN A FREE COPY OF MY NOVEL, Requiem for the status quo.
Several of the AlzAuthors group of writers who have written fiction or non-fiction books on the subject of Alzheimer’s or other dementia are offering special, discounted offers to those who would like to get ahold of a select group of books being offered September 27 – 30, 2017.
I am a member of this group of writers and am offering a total of eight free copies of my novel, Requiem for the status quo: four (4) free Kindle eBooks and four (4) free paperback books (the latter available to residents of the United States only). All you need to do is Like/Follow my author Facebook page, then write a comment in the AlzAuthor post that appears on that page.
In order to get in the drawing for a free Kindle eBook or free paperback copy, you must indicate in the comment section which format you would prefer: Kindle eBook or paperback. Please don’t say you don’t care which format you receive; for accounting and distribution purposes I will only put your name in one of the drawings so be sure to specify your preference.
All those Liking my page and posting a comment indicating their format preference will have their names entered into a drawing that will take place at Noon, Pacific Standard Time, on Saturday, September 30th. I will Messenger the winners through FB to request either your e-mail address (for eBook sending) or postal delivery address (for paperback book shipment) so that I can send out your complimentary book copies the first week of October.
But I am not the only author offering great deals on books – all the books contained within the graphic on this post are discounted during the September 27 – 30th timeframe. Be sure to go to the AlzAuthors website, click on the Bookstore tab, locate the author and their book being offered at a discounted price, click on the photo of their book and you will be directed to the site where their discounted book can be purchased. Since I am personally offering free copies of my novel – as opposed to doing so through an Amazon.com promotion – you will not find Requiem for the status quo in the AlzAuthors bookstore during this promotion.
I’ve been authoring this blog, Baby Boomers and More, for five and a half years. Perhaps that’s a record for blog ownership, I’m not sure, but what I do know is that I thoroughly enjoy writing about matters of significance. I guess that’s why my blog has survived as long as it has: there are a heck of a lot of things going on in the world that fall into that category.
My website address remains the same: http://www.babyboomersandmore.com, but with a broader emphasis on life as it unfolds for all of us born within a certain year bracket:
- iGen (after 2000)
- Millennials (1980-2000)
- Gen X (1965-1979)
- Baby Boomers (1946-1964) and
- The Greatest Generation (before the end of WWII).
Yes, there are many differences between the generations but we have one major characteristic in common: although as individuals we are strong in many ways, we still need each other to get to the finish line.
With that change in overall focus comes a new, primary blog identification:
Living: the ultimate team sport
If we consider all the people with whom we come in contact as being members of the same team, we will do all we can to support them. We’ll bolster rather than compete; we’ll pick them up rather than step over them as a means to an end; we’ll exhibit respect for each other’s talents while nurturing our own; we’ll not take advantage of weaknesses in order to falsely boost our own strengths. In short, we’ll stand by our teammates and want only the very best for them.
Another goal of mine: write more succinctly, at least after this particular post. 🙂 I know you’re all busy and have better things to do than read my oftentimes lengthy magnum opuses. I’m newly committed to being as succinct as possible, somewhere along the lines of an article I wrote on December 27, 2016: Don’t go there. Let’s face it, as a writer, I should be able to use an economy of words to get my point across to those who’ve chosen to follow me.
And one last thing: the header images you’ll see at the top of my blog (which will cycle through randomly) are from photos I took during a few of my hikes around the Pacific Northwest. Hiking is my passion, so I’m pleased to provide snapshots of views I have been privileged to see.
With that, I’ll sign off for now, so very glad to be a member of your team.
If I can’t do anything useful, at least I would like to do as little harm as possible. Wherever You Go, There You Are, by John Kabat-Zihn
Do no harm is a practice found in various aspects of society – including the Hippocratic Oath – and it was the underlying principle of Mahatma Gandhi’s revolution and his personal meditation practice. But what does it mean? Is it really as simple as doing no harm? You tell me.
Do no harm: Don’t do anything while driving that will piss off other drivers.
Do no harm: Don’t speak ill of others behind their back.
Do no harm: Don’t use social media to bully or anger an individual or a group of people.
Do no harm: Don’t ignore the server or courtesy clerk who’s working as hard as he/she can for you. Engage them in conversation; make their day by respecting what they do.
Do no harm: Don’t be unkind to anyone; think of how it felt when someone was unkind to you.
Do no harm: Don’t litter or do anything that harms the environment, regardless of how small.
Do no harm: Don’t put off a kindness such as sending a card to someone for no reason at all – or for every reason you can think of. Your card and message may be just what that person needs that day.
Do no harm: Don’t ignore the impulse to turn around to the person behind you while in line to say, “I’m not in a hurry, why don’t you go before me.” You may not be in a rush and he or she may be; think how your thoughtfulness will impact the remainder of their day.
Do no harm: Don’t keep compliments to yourself. For example, if your spouse or friend looks nice, tell him or her. It doesn’t do the person any good if you keep it to yourself. Your lack of attention may cause harm.
Do no harm: Don’t expect someone else to make a difference; you make a difference in whatever way you can, even if doing so is an inconvenience. Your inconvenience may be just what the world needs at that very moment in time.
Do no harm: What I have provided above barely scratches the surface of how we can do no harm. Please add your input in the comments section below to provide all of us with examples of how we might improve our personal corner of the world.
My wish for you: health, joy, and peace in the New Year.
For the next few Fridays, I am going to re-blog articles I’ve written over the years that address being a positive influence on the world around us. My about-face, (see my post Good Starts with Me) got me thinking about whether or not I’ve sufficiently addressed topics that provide encouragement to all of us, to live a life centered around acts of kindness for others.
Turns out I’ve written 216 posts on this subject. But have no fear, I won’t post all of them, but I will select a few to offer you on a weekly basis for awhile. I hope you enjoy them.
Helene Gayle, Care USA President and CEO, learned early on in her adult life that giving to others was a necessary part of her participation in this world. It makes sense, then, that she heads a major international humanitarian agency that delivers emergency relief and support for long-term development projects. This organization is nonsectarian, impartial, and non-governmental. In my estimation, what could be better than that? In the book, Getting There by Gillian Zoe Segal, Ms. Gayle had this to say about effecting social change:
Social change is better achieved by being for something (rather) than against something. Growing up, I was part of a protest generation. We protested the war and stood in support of liberation struggles in Africa. Whenever we saw a problem, we were “against” it.
It’s easy to think that by being against something you’re standing up for a cause, but if you want to have…
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Gay, straight or trans.
Rich, middle class or poor.
Religious, agnostic, or atheist.
Young or old…
We’re all the same, but different.
In the book A Different Perspective on Alzheimer’s and Other Dementias: Practical Tools with Spiritual Insights, author Megan Carnarius relayed a conversation she had with one of the employees she supervised in a long-term care facility who was moving out of state. Ms. Carnarius asked this young caregiver what she had learned from her job of four years. This is what she said,
Older people are no different from any of us. People with dementia are no different from us. They all, we all, have the same feelings and needs.
They want to laugh and be silly, they want to be listened to and be taken seriously, they want to be reassured and loved, they want to love and be helpful, make a contribution, just like everyone else.
I learned that here.
It is my hope that all of us learn that same lesson so that whomever is in our lives, so that all those with whom we come in contact, we’ll be able to recognize ourselves in them and perhaps treat them with the respect for which all of us yearn.
Dedicated to unappreciated care partners worldwide. Thank you for all you do. Dear random person who sees my care partner from time to time and feels the need to point out s/he has bruises all over her/his body that look frightening and s/he has really declined a lot since the last time you saw her/him and…
I don’t know what is the average survival rate of a Blog. I guess as long as the host has something to say and is willing to be consistent in her/his efforts, it can last quite some time.
Four years after the death of my father to Alzheimer’s disease I started looking into what all this blogging crapola was about. I felt my experience as a caregiver, coupled with my work as a long-term care ombudsman for the State of Washington (now retired), gave me ample ammunition for subject matters that relate to our aging population … but not just to our aging population, to all of you who are faced with the struggles inherent from having aging loved ones.
About half way through my Blogging experience I changed the “About this Blog” portion of my website to reflect that there is a commonality among those problems experienced by young and old alike. Those problems may look somewhat different on the outside but all of them involve the following sentiment:
Life sometimes throws curve balls at us for which none of us are prepared.
I guess I still maintain this Blog because I still have something to say, and some people out there still need to hear it.
I witnessed a sad occurrence at my local grocery store the other day. Read the rest of this entry »
When I’m an old lady and end up in a care facility, I sincerely hope my personality and attitudes don’t relegate me to the category of “that crabby old lady in Room 210.” Have you visited someone in a nursing home or hospital and had the distinct feeling that the patients were treated like numbers or medical cases? You know what I mean: “the urinary tract infection in 4A” or “the decubitis in South 6.” Wow, that’s a horrible thing to consider for myself: the history of all my years on this earth being characterized as a medical condition or an intolerable behavior resulting from that condition.
What about my history of being a pretty darn good mother/wife/business person/neighbor/community volunteer/friend? Doesn’t that person still exist within the body occupying that bed?
Let’s all take the time to read this poem that depicts such a scene. Gender-wise, this could be about a crabby old man as well. Read the rest of this entry »
In my blog post, BEWARE of this Craigslist scam, I highlighted an online crime that almost succeeded in robbing one of my family members. He posted a piano for sale – a piano that needed quite a bit of work to make it operational – and he almost got taken to the cleaners. (Read the BEWARE article for the details.)
A couple weeks later, a true lover of all-things piano contacted my family member and said he was interested in purchasing the piano and he and his wife wanted to have a look-see. The couple arrived – a couple in their 80s – and when the husband took one look at the beat up piano he said, “You’ve got a deal!”
It turns out, this fellow is an expert at restoring pianos. For years now, he’s been buying pianos that are on their last legs; he restores them and gives them to children who would otherwise not be able to own a piano. What a fabulous gift these future piano virtuosos – and their parents – receive because of this couple’s “ministry” of helping young musicians.
I’m thrilled I was able to provide this Craigslist redemption story that – in my mind – wipes out the bad taste in my mouth from the previous one.
I’ve used Craigslist once. I announced a garage sale from which all proceeds would be donated to the Alzheimer’s Association. I felt safe advertising the sale because a) it was only scheduled for six hours on a Saturday; and b) several friends and supporters were on site throughout the entire sale so I wasn’t alone. (And of course all items were outside and there was no access to the inside of our house.) The garage sale was a huge success but I haven’t used Craigslist since.
I’m sure many of you have either listed something for sale or purchased an item that was for sale on Craigslist and were very pleased: the money exchanged hands and both parties benefited from the online service.
That was not the case for an acquaintance of mine who was recently set up for a scam but was smart enough to realize that if it looks like a rat and smells like a rat, it’s probably a rat. (Bad analogy, but you get my point.) Read the rest of this entry »
The attached article from the Kindness Blog immediately caught my attention. Please take the time to click on the above link to discover nine easy ways to help an elder in your community. Whether that person is a family member, or a perfect stranger, the basic truth remains the same. As an advocate for the elderly I can’t help but encourage all of us to practice respect for those older than ourselves. Read the rest of this entry »
If you’re like me, you’re wondering how another year has slipped by so quickly. I’m sure there were a few of the 52 weeks that seemed to slog by, but all in all we can now look back and marvel at what we accomplished, or what others accomplished in our stead, during the past 365 days.
An accomplishment with which I’m happy is having authored this blog for the past three and a half years. I’ve provided this blog for you, but I’ve also provided it for me because I truly enjoy having the opportunity to share my experiences and my viewpoints; I hope in the process that I have encouraged, helped, and entertained you. From the start of Baby Boomers and More in 2011 to the end of 2014, I posted 520 articles. I’d be a very happy blogger if the quality of those articles surpassed the quantity because if I’m just talking into thin air without benefit to others, its hardly worth the space my blog occupies.
Here are links to the five most visited articles in the year 2014 based on WordPress statistics:
Read the rest of this entry »
Thank you for returning to this multi-part series on long-term care residents’ rights. At the bottom of this article, you will find links to the previous five postings. As this is the last in the series, I want to advise my readers that I have in no way covered every topic that could be covered in a series such as this one. I have, however, covered complaint topics that quite commonly occur in long-term care settings. In most complaint categories, more than one residents’ rights law has been violated. For the most part, I have only mentioned one aspect of the law that addresses the rights violations.
Today’s topic covers the umbrella topic of dignity and quality of life. Without exception, every rights violation is an infringement of a resident’s dignity and a detriment towards enhancing the quality of life residents should expect to experience. The same holds true whether that resident lives in a “Champagne and Chandelier” facility or a “Generic Brand X” facility. Regardless of how fancy, regardless of how bland, the same rights are afforded to all residents. All situations listed in this six-part series assume a resident is cognitively capable of making his or her own decisions.
Breakfast in bed, pee on the side
I rolled over in bed thinking I might get a few additional minutes of sleep, but those potential minutes were rudely interrupted by the assault from the room’s overhead light, the hustle of someone rushing into my room, and the abrupt raising of the head of my electrically powered bed. I don’t know if you’ve ever tried to remain curled up on your side while half of your bed is put at a 90 degree angle, but trust me, it’s not possible and it’s not comfortable.
“Hey, Gloria, time for breakfast. Come on, open your eyes and sit up so I can give you your breakfast tray.”
I’ve lived in this nursing home for three months now and every time one of these care people talks to me, they call me by my first name, and in my eyes, that’s a sign of disrespect. “First of all, I’ll remind you that my name is Mrs. Lewis, and second of all, I absolutely cannot eat the morning meal prior to going to the bathroom. Please help me to the toilet and then I’ll have my breakfast.”
“No can do, Gloria, you’re just one of forty other patients I have to personally deliver meals to this morning. You should have thought of that earlier and asked one of us to take you to the toilet before we started delivering meals.”
“But I was asleep, and besides, I told the head nurse many times that I require toileting assistance and that I require it before my morning meal. How many other times must I make this request?”
“I don’t know, how many?”
I looked at this uncaring individual and pleaded with her. “Please won’t you take me to the potty? My bladder is ready to burst!”
“Look, I’m already running behind. Just go in your pants, that’s what your nighttime diaper is for any way. Sometime after your breakfast, someone will clean you up, but it won’t be me. After I deliver all my trays, my shift is over.”
Imagine, if you can, not having the opportunity to use the bathroom after a full night’s sleep, and trying to enjoy a meal that is placed before you. Then imagine not being able to hold it any longer and peeing yourself and sitting in it for who knows how long. The above scenario is real. A family member of mine experienced this exact scenario. I also am acquainted with a gentleman who, after asking three times in a half hour period to be assisted to the restroom so he could evacuate his bowels, he was told “Go in your pants. I don’t have time to help you right now.” That neglect does not preserve a person’s dignity, nor does it promote quality of life.
42 CFR 483.15 Quality of life. A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement of each resident’s quality of life.
(a) Dignity. The facility must promote care for residents in a manner and in an environment that maintains or enhances each resident’s dignity and respect in full recognition of his or her individuality. See also Washington State law RCW 70.129.005 and RCW 70.129.140
What follows are a few other frequently occurring scenarios found in LTC residential settings:
Visitation policies: residents have the right to receive visitors of his/her choosing and a facility must not interfere with such access. There is no such thing as visiting hours, regardless of the LTC setting. If an adult son’s work schedule is such that he can only visit before 8 a.m. or after 9 p.m., reasonable accommodation must be made to facilitate his visit.
Choices regarding schedules, clothing: regardless of LTC dining room and meal hours, a resident has the right to receive meals outside of those hours. For example, if a resident is not an early-riser, he should still be able to acquire a suitable breakfast meal; this does not mean that he has full access to all that was offered prior to the “end” of breakfast hours, but he should still be able to eat breakfast items. A peanut butter & jelly sandwich does not qualify as such – unless, of course, that’s his choice. Unless a resident has turned over the responsibility of making daily clothing choices to a staff person, a resident must be given the opportunity to make clothing choices that are important to her. Clothing choices promote individuality. Each of you reading this article dress as you please; that shouldn’t change just because you move into an institutional setting.
Isolation & seclusion: punishment to a resident for perceived misbehavior in the form of prohibiting participation in dining room meals and/or activities of his choosing, is not appropriate and is a complete violation of a resident’s rights. A better response to behavioral issues is to discern the cause of said issues, e.g., depression, medication anomalies, medical conditions such as a urinary tract infection (UTI). Resolve the cause, and you resolve the effect.
Series links: Part 1, the right to make choices that are important to the resident; Part 2, admission polices, waivers of liability; Part 3, eviction and discharge process; Part 4, substandard and neglectful care; Part 5, accepting or rejecting medical care.
If you or a loved one need assistance regarding LTC residents’ rights, contact your local LTC Ombudsman office which can be located at the National Long-Term Care Ombudsman Resource Center.
Welcome to Part 5 of my series on long-term care (LTC) residents’ rights. Part 1 focused on a resident’s right to make choices that are important to her. In Part 2, I discussed the topic of LTC admission procedures, specifically, a Waiver of Liability document that is oftentimes included in the admission packet. Part 3 addressed eviction/discharge from a long-term care facility, and Part 4 addressed abuse and substandard care. Today’s topic addresses a resident’s right to choose, or reject, prescribed medical care.
A pile of poo disguised as a hot dog
I guess when you don’t have a choice in the matter you gradually come around to liking life in the assisted living “community” as the staff at this facility like to call it. When I couldn’t get around my old place without the constant threat of falling in the neighborhood or falling asleep at the wheel of my 1994 Mercury Sable, I took my son’s advice as gospel, and let him move me five miles from my lady friends, and ten miles from the Baptist church I had attended for God knows how long.
Now, my only option is to attend an ecumenical service in the activity room each Sunday – it more or less satisfies those who rely on some sort of ritual to get them through the following week – and I have a completely new set of lady friends with whom I eat every meal.
It must be baseball season; for lunch today, the dining room is decorated with red, white, and blue crepe paper and the centerpieces contain a miniature bat and ball placed “just so” surrounded by a pile of sticky Cracker Jacks that we’re told are not edible, but I try one anyway and add credibility to the admonishment by spitting it out into my napkin.
Lord have mercy, we even have a special lunch menu from which we can choose what apparently is considered food one would eat at sporting exhibitions: hot dogs, hamburgers, fries, all served with a gigantic phallic-looking dill pickle on the side. Now, don’t act so shocked. The young people don’t think us older folk know what the intimate body parts are called and that we would never know what to do with them even if we did, but let me tell you, my group of lady friends have a laugh or two over things of a sexual nature. We’re not dead yet and most of our memories of such things are still intact.
The four of us ordered the chili dog special and got caught up on all the latest news since the previous time we saw each other. About ten minutes later, my meal was served, followed by everyone else’s, and the young server said, “Bon appetite!” But something was horribly wrong. Before the gal got too far away, I beckoned her back to the table. “Sweetie, what is this pile of dog-poop looking stuff on my plate?”
“That’s your chili dog.”
“My lady friends ordered the same thing I ordered and yet look at each of theirs: a hot dog is nestled into a bun, smothered by chili, cheddar cheese, and a few onions. My hot dog, on the other hand, looks like a pile of poo!”
The waitress addressed me, and therefore all the other ladies at the table. “We have a Special Menu report the kitchen & wait staff are required to review before each meal. There was an entry for you stating that all your food must be pureed because you’ve been having difficulty swallowing. Evidently, when you went out to dinner with your son a couple days ago, you almost aspirated on a piece of flank steak. Remember? The Maitre d’ of that restaurant had to Heimlich you. You could have choked! You won’t choke on pureed food – or at least we hope you don’t – so that’s what you have to eat. Doctor’s orders.”
My lady friends looked embarrassed for me and pretended that this youngster wasn’t talking about my health issues in front of everyone within hearing range. But that’s not the only thing that’s bothering me right now: I want to eat a chili dog that looks like the rest of the chili dogs on the table so I decided to tell the server. “I’m sorry, remind me of your name, sweetie?”
“My name is Jessica.”
I picked up the plate of poo and shoved it towards her. “Jessica, please toss this mess in the trash and bring out a real chili dog, and while you’re at it, I want a hefty serving of French fries as well.”
“I can’t do that Mrs. Bellamy, I’ll get in trouble.”
“You’ll get in trouble if you don’t provide me with the food that I’ve requested. Please take this plate away from me, my arm is getting tired holding it up.”
The youngster took my plate and with the other hand, signaled her boss to join her in the kitchen – no doubt to report my aberrant behavior. My lady friends, however, applauded my assertive efforts, and offered me a bite of their dogs while I waited for mine to be served.
Mrs. Bellamy’s pureed diet was prescribed by her doctor; as such, it is now a part of her medical profile at the assisted living facility in which she lives. Mrs. Bellamy chose to ignore her doctor’s orders – certainly her right whether she lived in her private home or this public facility. Residents at LTC facilities have the right to refuse prescribed treatments such as restrictive diets, medications, or physical therapy to name a few. As cognitively capable adults, they have the right to go against doctor’s orders, fully understanding the risks of not abiding by such orders.
42 CFR 483.10
(b) Notice of rights and services.
(1) The facility must inform the resident both orally and in writing in a language that the resident understands of his or her rights and rules and regulations governing resident conduct and responsibilities during the stay in the facility…
(3) The resident has the right to be fully informed in language that he or she can understand, of his or her total health status, including but not limited to, his or her medical condition;
(4) The resident has the right to refuse treatment, to refuse to participate in experimental research, and to formulate an advance directive as specified in paragraph (8) of this section; …
(d) Free choice. The resident has the right to –
(1) Choose a personal attending physician;
(2) Be fully informed in advance about care and treatment and of any changes in that care or treatment that may affect the resident’s well-being; and
(3) Unless adjudged incompetent or otherwise found to be incapacitated under the laws of the State, participate in planning care and treatment or changes in care and treatment. See also Washington State law RCW 74.42.040(3)
Additionally, Mrs. Bellamy’s medical condition should not have been discussed in front of everyone within hearing distance: her lady friends, other residents seated adjacent to Mrs. Bellamy’s table. The HIPAA Privacy Rule also applies in LTC settings. Jessica, the server, violated Mrs. Bellamy’s right to privacy by talking about her medical condition.
If you or a loved one need assistance regarding LTC residents’ rights, contact your local LTC Ombudsman office which can be located at the National Long-Term Care Ombudsman Resource Center.
Part 6, the final installment of this series, will deal with dignity and quality of life. Part 6 will be posted on Wednesday morning, November 26.
Welcome to Part 4 of my series on long-term care (LTC) residents’ rights. Part 1 focused on a resident’s right to make choices that are important to her. In Part 2, I discussed the topic of LTC admission procedures, specifically, a Waiver of Liability document that is oftentimes included in the admission packet. Part 3 addressed eviction/discharge from a long-term care facility. Today’s topic addresses substandard and neglectful care. Let’s look at this scenario:
Take the pressure off Mom
My mother was the quintessential social butterfly but not in the way one might imagine. Her social involvement didn’t include tennis or golf, nor did it center on being seen at extravagant galas around the city. My mother, Joan Young, socialized with the homeless, the hungry, and the vulnerable. Mom was a volunteer extraordinaire whose monthly calendar was filled with opportunities in which she would donate her time, her resources, and her compassion.
One of her most time-consuming, but most gratifying volunteer venues, was as an activity assistant at Shady Rest Nursing and Rehab Center. That same venue is now her permanent home where she’s lived the past month and a half since a massive stroke robbed her of the ability to speak or move her limbs. We think she understands what we say to her because oftentimes she’ll get a twinkle in her eye that appears to relay some sort of connection with us. The experts say she most likely still recognizes us, but even if that is not the case, I hope the presence of smiling, happy visitors go far towards improving her quality of life.
The last few days, however, mom was withdrawn, and more often than not, she slept through my visit. Because I live within close proximity of the Shady Rest, I visit her almost daily. Dad and his wife live another state over, so although they were on speaking terms prior to mom’s stroke, speaking to anyone isn’t really mom’s strong suit right now. I don’t mind carrying the torch for mom; she’d do the same for me.
After four days of a significant reduction in alertness, I talked to the head floor nurse to discuss mom’s change in condition. She assured me that one can expect sudden changes in levels of cognition after the assault that was placed on her body as a result of the stroke. The nurse told me to toss my cares aside and trust the Shady Rest staff with mom’s care. “She’s in good hands, Robin. There’s no need for you to worry. If there is ever anything that needs medical attention, be assured we’ll take care of her.”
But they didn’t. Three days later, I noticed a fetid smell as soon as I entered her room. At first I thought that perhaps mom had gone Number 2 in her adult diapers but when I lifted up the sheet that covered her body, I saw she wasn’t wearing any. But oh my God, the smell was even worse. I looked behind me to see if anyone was looking, and seeing that the coast was clear, I gently rolled my mother’s body away from me and discovered the source of the stench: an oozing, red and green sore about the size of a quarter on her left buttocks. I couldn’t help myself; I ran into the bathroom and threw up the lunch I had eaten prior to arriving.
Then I pushed the Call Button which is supposed to summon a health worker post-haste – or so I was told when mom first moved in. Three minutes ticked by: no response. I pushed the button again, this time walking to the doorway of mom’s room to look up and down the hallway for signs of incoming staff members. Not a soul in sight.
I left my mother’s room in search of a staff person and landed in front of the nurses’ station. I pounded on the counter, “Hello! I’m Robin, Joan Young’s daughter. I called you twice from my mom’s room.” That’s when I heard, for the first time, a sound that in the past always seemed to be an indeterminate background noise: the persistent dinging of Call Button tones from various rooms on the floor. A quick glance up and down the hallway also showed lights blinking above numerous rooms that coincided with each ding.
I pounded the counter again and pointed at the LPN sitting at a computer. “You, follow me.”
“Miss Robin, I’m finishing up a report, I can’t leave my desk right now.”
I tossed all protocol to the side, walked behind the counter, pulled the computer mouse out of her hand, jerked her chair back and tilted it forward. “Come with me, now.”
That seemed to work but I didn’t take any chances. I held her hand and pulled her down the hallway into my mother’s room. “Do you smell that?” And then I pulled down the sheet on my mother’s bed, gently rolled her away from us and added, “Do you see that?”
“Oh my, Mrs. Young has a bed sore.”
“Ya’ think? This sore didn’t just materialize in the past three hours ya know. It’s been festering.”
“You could be right.”
“No, I am right. I want you to summon the head of nursing and I want you to summon her now. Tell her to meet me in my mom’s room, ASAP.” The LPN didn’t move, so I pushed her out the door. “Go!”
The bed sore – or decubitus – had yet to go bone deep. Had that been the case, mom would most likely not have recovered from the infection. As it was, her health never returned to its previous state, even with the excellent care she receives at a different nursing home, thirty miles away from where I live. Sunnyside Nursing Home wasn’t as fancy as the other place, but obviously, looks can be very deceiving. What my mom saw as an activity assistant volunteer was far different from what she experienced as a patient. When we chose Shady Rest as her new home, we did so without the benefit of readily available resources that would have provided red flags as to the quality of care provided. We figured, “Heck, mom loved volunteering at Shady Rest, why look any further?”
Shame on us.
Joan Young was the victim of willful inaction that caused a potentially fatal injury to her person. Joan’s inability to verbalize or express her pain and discomfort, other than the withdrawal and malaise eventually recognized by her daughter, put Joan at even greater risk of serious health decline resultant from the unattended bedsore. Facilities must assure that a resident’s body is routinely turned to different and varied sitting and lying positions in an effort to prevent such bedsores. In addition to bedsore prevention, if Joan had been diligently cared for – for example, if her ongoing bathing and care plan had been strictly followed – any skin abnormalities would have been immediately noted and attended to and infection could have been avoided.
42 CFR 483.25 Quality of care. Each resident must receive and the facility must provide the necessary care and services to attain or maintain the highest practicable physical, mental, and psychosocial well-being, in accordance with the comprehensive assessment and plan of care …
(c) Pressure sores. Based on the comprehensive assessment of a resident, the facility must ensure that –
(1) A resident who enters the facility without pressure sores does not develop pressure sores unless the individual’s clinical condition demonstrates that they were unavoidable; and
(2) A resident having pressure sores receives necessary treatment and services to promote healing, prevent infection and prevent new sores from developing. See also Washington State law RCW 74.34.
Some of you readers might be thinking, Well, if her daughter had been more attentive, she would have noticed the sore earlier or Why didn’t she say something about her mother’s malaise right away instead of waiting several days? Being an armchair quarterback is a very easy position to play. The very unfortunate – yet somewhat understandable – attitude of some family members and/or patients is: This is a licensed facility staffed by medical professionals; who am I to question their ability to take care of my mother? The answer to that is obvious: even when a family member moves into a long-term care setting, you must continue to exercise your role as family advocate. I understand the relief one feels of trusting ones care to a staff of professionals, but the unfortunate truth is sometimes that trust is misplaced.
If you or a loved one need assistance regarding LTC residents’ rights, contact your local LTC Ombudsman office which can be located at the National Long-Term Care Ombudsman Resource Center.
Part 5 of this series will deal with a resident’s right to make choices about their own medical treatment. Part 5 will be posted on Friday morning, November 21.
Welcome to Part 3 of my series on long-term care (LTC) residents’ rights. Part 1 focused on a resident’s right to make choices that are important to her. In Part 2, I discussed the topic of LTC admission procedures, specifically, a Waiver of Liability document that is oftentimes included in the admission packet. Today’s topic speaks of the practice of illegal discharge from a LTC residential setting.
Adios, Mr. Reilly
“What do you mean I have a week to move my father? For what reason?”
Raymond Ortiz, the Easy Breezy Group Home owner, situated himself in the plush chair in which he was sitting, opened up the manila folder that was on the desk in front of him, put on his reading glasses, scanned the piece of paper inside, and then closed the folder. “I know this seems to be coming out of the blue, but the staff and I have decided that your father just doesn’t fit in with the rest of the residents. They, and us, would be happier if Harold wasn’t living here.”
I couldn’t believe what I was hearing; dad had lived at this group home for three months without a complaint from anyone, and now this? “What specifically has he done – or not done – that renders him an unsuitable resident? What do those notes in my dad’s file specify as the reason?”
“You see, it’s not as simple as that. Your father hasn’t complied with the way the other residents live, and let’s not forget, they were here before him.”
I was having a hard time controlling my temper. Through gritted teeth I said, “Specifics, please.”
“For one, he wakes up earlier than the other five residents – sometimes as early as 6 am – and in the evening, he insists on staying up well past 10 pm. His early morning schedule disturbs those who are sleeping, as does his late night schedule. I’m sure you can understand that sleep is a very important aspect of our residents’ healthcare and when that is jeopardized because of just one of our residents, we have to take measures to accommodate the majority.”
“Wait a minute, you mean to tell me that the other residents’ schedules are more important than my father’s? That’s utterly ridiculous. Tell me, is my father doing jumping jacks in the middle of the living room with the stereo blaring while everyone is asleep?”
“Now you’re being silly.”
“No, Mr. Ortiz, now I’m getting angry. If dad isn’t making a ruckus, why the concern? My father has always been an early riser – moving in here shouldn’t require that he change that feature of his life; same goes for staying up later than the others. His end-of-day routine has always involved sitting down with a good book and reading – sometimes for hours on end. What’s so disruptive about that?”
“Two things, really. He flushes the toilet, which of course makes noise, and the resident on the other side of the bathroom hears the flush and his sleep is disturbed. Also, the evening caregiver has evening chores to do and afterwards, lays down on the couch to be rested up for the next day’s activities. He can’t sleep while your father is still awake.”
I closed my eyes and tried to compose myself. “Look, when my dad moved in, you made a point of telling us that Easy Breezy is his home, just as if he owned the place, just as if he’d lived here all his life. Kind of like, ‘Mi casa es su casa’ and I took you at your word. Nothing you’ve said today jives with that sentiment, and I’m quite sure that nothing you’ve mentioned is grounds for throwing him to the curb. First of all, I know you have to give written notice and it has to be given with more notice than you’ve given me, and I’m damn certain your flimsy reasons won’t stand up to legal scrutiny once I’ve looked into this.”
“Now Ms. Reilly, no need to get all huffy about this. That’s just the way it is; majority rules.”
I stood up, slung my purse over my shoulder and said, “We’ll see about that Mr. Ortiz. I’ll be back.”
As Ms. Reilly surmised, any notice of discharge must be made in writing and must be provided at least 30-days from the date of discharge from the facility (said requirements stated at length in 42 CFR 483.12.) Federal and State governments make it very difficult for administrators/owners to move a resident out of their property. As stated in the CFR below, there must be a very valid reason, e.g., health and safety of individuals are in jeopardy, and certainly that is not the case in the scenario above.
42 CFR 483.12 Admission, transfer and discharge rights.
(2) Transfer and discharge requirements. The facility must permit each resident to remain in the facility, and not transfer or discharge the resident from the facility unless –
(i) The transfer or discharge is necessary for the resident’s welfare and the resident’s needs cannot be met in the facility;
(ii) The transfer or discharge is appropriate because the resident’s health has improved sufficiently so the resident no longer needs the services provided by the facility;
(iii) The safety of individuals in the facility is endangered;
(iv) The health of individuals in the facility would otherwise be endangered; See also Washington State law 70.129.110
Part 4 of this series will deal with abuse and neglect of residents in LTC facilities. Part 4 will be posted on Wednesday morning, November 19.
I hope you have already had a chance to look at Part 1 of this series on LTC residents’ rights. Today’s topic focuses on one aspect of the admission process that oftentimes slips through the cracks unnoticed.
The case of the missing Kindle Fire
That’s my cue to vacate the apartment and let a staff member clean my place. I turned off my Kindle Fire, placed it next to my reading chair, and opened the door. “I’m so glad you’re here. I love having a clean apartment and always look forward to my weekly cleaning.”
“You are Mrs. Ruth Milliken?”
“Yes, that’s me. Are you new on staff at Fairview Manor?”
“Yes, I am Carolina, I start this week. May I come in and clean?”
“Certainly, I’m heading to lunch so take your time.”
It was so nice being able to take advantage of the good weather by having lunch on the patio for a change. I’m going to read a bit and then maybe take a nap; all that sunshine made me a bit sleepy. I unlocked my apartment door, made myself a cup of tea, and returned to my reading chair.
“Oops! I’d swear I left my Kindle right here on the table next to my chair.” I stood up and lifted the seat cushion, thinking perhaps that it slipped between the cushion and chair frame without my knowing it.
“Now this is silly, I know I placed it on the side table.” Just the same, I looked throughout my apartment to make sure I wasn’t mistaken. A sudden realization hit me, “That new housekeeper, she must have stolen it.”
I made my way to the Administrator’s office to report the mishap. “Jason, may I come in?”
“Certainly Mrs. Milliken, have a seat, how can I help you?”
I sat on the edge of one of the visitor chairs and relayed my suspicions about my missing Kindle. “So you see, I’m certain it must have been your new housekeeper, Carolina. She was the only one who had access to my apartment while I was at lunch.”
“Are you sure you’re not mistaken? Was your door locked when you returned from lunch?”
“Yes, it was; at least the housekeeper locked up after herself.”
Jason got up from his desk, retrieved a folder from the large file cabinet behind him, and returned to his desk. “I’m truly sorry you’ve misplaced your IPad.”
“It was a Kindle – the latest Kindle Fire and it was a gift from my daughter-in-law.”
“Okay – Kindle.” He opened the folder and thumbed through a few pages and folded back one of them. “If you’ll look right here, you’ll see that you signed a Waiver of Liability when you moved into Fairview Manor.” He turned the folder towards me so I could read it. “This is your signature, isn’t it?”
“Well, yes, that’s my signature, but you can’t be saying that you’re penalizing me for signing that document. I signed lots of documents that day, fully trusting that everything you placed before me was on the up and up. Let me read that thing.” I glanced through the wording and couldn’t believe what I was reading: Fairview Manor and its parent company, Senior Housing Corporation, accepts no liability for items lost, stolen, or otherwise misplaced.
I looked up at Jason who was comfortably reclining in his executive desk chair. “This is utterly ridiculous; if I had understood what you were asking me to sign, I would have never signed this piece of paper.”
“If you hadn’t, we would have had no recourse but to refuse your admission into our community.”
“But that housekeeper stole my property. You have a thief on staff here.”
“I assure you, every employee hired at Fairview Manor goes through a criminal background check – otherwise they can’t work here.”
“Did Carolina’s background check come back clean?”
“Her State background check came back but not the Federal. She has a clean slate in Oregon, I’m sure the Federal check will come back clean as well.”
I am absolutely stunned; I know the implications. “So she could have committed a crime in another state – which would show up on the Federal database but not the State one – and you let her work here without first knowing if she was cleared?”
Jason had the audacity to shake his head and chuckle. “I assure you, in all my years working in the industry, there’s never been an employee who didn’t pass with flying colors. I’m not worried about Carolina.”
I stood up and addressed the Administrator. “I can’t believe I’ll never see my Kindle again. You can’t possibly think that’s fair, Jason.”
“My hands are tied, fair or not.”
All employees working with vulnerable adults are not permitted to work in a facility without a completed criminal background check.
42 CFR 483.13
(c) Staff treatment of residents. The facility must develop and implement written policies and procedures that prohibit mistreatment, neglect, and abuse of residents and misappropriation of resident property.
(1) The facility must
(i) Not use verbal, mental, sexual, or physical abuse, corporal punishment, or involuntary seclusion;
(ii) Not employ individuals who have been
(A) Found guilty of abusing, neglecting, or mistreating residents by a court of law; or
(B) Have had a finding entered into the State nurse aide registry concerning abuse, neglect, mistreatment of residents or misappropriation of their property; and
(iii) Report any knowledge it has of actions by a court of law against an employee which would indicate unfitness for service as a nurse aide of other facility staff to the State nurse aide registry or licensing authorities.
(2) The facility must ensure that all alleged violations involving mistreatment, neglect, or abuse, including injuries of unknown source, and misappropriation of resident property are reported immediately to the administrator of the facility and to other officials in accordance with State law through established procedures. See also Washington State law RCW 70.129.130
The admission process into a long-term care facility is stressful on residents and their family members. What they fail to realize is that the resident agreement they sign, and all other sub-documents of that agreement, are legal documents: some of them binding, others not. As such, it is a very good idea to read them ahead of time and even have them reviewed by an attorney or legal advocacy group. Most states do not permit Waivers of Liability to be a part of the LTC admission process. Administrators, however, oftentimes succeed in slipping that document into the ream of documents residents must sign. The good news is that such waivers are not enforceable; the bad news is that residents assume that because they signed a Waiver of Liability, they have no recourse when their personal belongings are stolen by staff and/or other residents.
Washington State law RCW 70.129.105 Waiver of liability and resident rights limited. No long-term care facility or nursing facility licensed under RCW 18.51 shall require or request residents to sign waivers of potential liability for losses of personal property or injury, or to sign waivers of residents’ rights set forth in this chapter or in the applicable licensing or certification laws.
Since the Waiver of Liability is not enforceable, the flip side of that is that the facility is liable and should either replace Mrs. Milliken’s Kindle Fire or provide the funds for her to purchase a new one.
Part 3 of this series will deal with the discharge/eviction of a resident from a long-term care facility. Part 3 will be posted on Friday morning, November 14.
Since Baby Boomers and their family members face the possibility of arranging long-term care (LTC) housing for a loved one, or will be on the receiving end of long-term care, I am providing information related to what one can and should expect while living in a LTC setting. This will be a multi-part series wherein I provide a real-life scenario, and the Code of Federal Regulations (CFR) citation applicable to that scenario. Since I live in Washington State, I will also provide the applicable State statute, and I encourage those living in other states to do an internet search for “long-term care residents’ rights in your state” in order to locate your local laws. All scenarios assume that the resident in question is cognitively able to make his or her own decisions.
My kids aren’t the boss of me!
I’m so excited, my soaps are about to start and I have the whole afternoon to myself. I’m looking forward to seeing how they’re going to get rid of Sami. She’s been on Days of our Lives since she was a young teenager; that’s a long time in soap opera years. I’ll just wheel into my bedroom, get my knitting basket, and set myself up in front of the television.
All right, now I’m ready; it’s time to tune in!
There’s a knock at the door, drat, right when my first soap is about to start. “Come in!” Oh no, it’s that perky activity person. When they interviewed candidates for her job they must have had a perkiness contest as one of the criteria for hiring. I’ll see if I can get rid of her real quick-like. “Hello, Ruby, what can I do for you today?”
“What can you do for me? Don’t be silly, it’s what I can do for you that matters, Mrs. Tanaka. We’re showing a movie in the main living room that I’m sure you’ll like. It’s called, 101 Dalmatians, won’t that be great?”
A movie about dogs instead of my soap operas? Not going to happen. “That’s okay, Ruby, I’m happy just watching my TV shows. Maybe some other time.” Now I’ve gone and done it, Ruby looks baffled, not sure how to change the course of her task.
“Mrs. Tanaka, I was told to wheel you to the living room for the movie and not take ‘no’ for an answer.” She pulled a piece of paper out of her smock’s deep pocket and showed it to me. “Look right here. It says, ‘The family has requested that their mother not spend an inordinate amount of time in her room and that she attend at least four activities per week.’ It’s already Thursday and you haven’t even been to one event this week. We have to make up for lost time.” She bent over my wheelchair, unlocked the brake and positioned herself behind it.
“But I don’t want to see the movie, I want to watch television. I love my soap operas and today’s the last day Sami is going to be on Days. Please, I don’t care what my children have requested, I’d really rather stay in my apartment.”
Ruby leaned over, picked up my yarn and needles, and placed them in my knitting bag on the floor. “Come on, I’m sure you’ll like it once you get there.” Pushing with all her might, Ruby escorted me out of my room, thus bringing an end to all my plans for the afternoon. Those children of mine have no right meddling into my private life. “Ruby, whose opinion matters most: the person who lives at this assisted living facility, or those who don’t? This isn’t fair; don’t I have rights?”
Mrs. Tanaka was coerced to go somewhere she didn’t want to go; because she was confined to a wheelchair, her ability to stand her ground by refusing to attend an activity was compromised. Additionally, although this resident can get around her apartment in her wheelchair, wheeling herself long distances is very problematic for her; as a result, once in the living room she would require assistance to return to her room, rendering her a captive audience.
42 CFR 483.10 The resident has a right to a dignified existence, self-determination, and communication with and access to persons and services inside and outside the facility. A facility must protect and promote the rights of each resident, including each of the following rights:
(a) Exercise of rights.
(1) The resident has the right to exercise his or her rights as a resident of the United States.
(2) The resident has the right to be free of interference, coercion, discrimination, and reprisal from the facility in exercising his or her rights. See also, Washington State law: RCW 70.129.140
Mrs. Tanaka has the right to make choices that are important to her. She wanted to watch television – not attend a kids’ movie. Regardless of what her adult children want, Mrs. Tanaka’s rights trump theirs.
42 CFR 483.15 Quality of Life A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement of each resident’s quality of life.
(a) Dignity. The facility must promote care for residents in a manner and in an environment that maintains or enhances each resident’s dignity and respect in full recognition of his or her individuality.
(b) Self-determination and participation. The resident has the right to:
(1) Choose activities, schedules, and health care consistent with his or her interests, assessments, and plans of care;
(2) Interact with members of the community both inside and outside the facility; and
(3) Make choices about aspects of his or her life in the facility that are significant to the resident. See also Washington State law RCW 70.129.140
Note: there are even more legal citations applicable to the above scenario; a quick search of 42 CFR 483 on the internet provides all laws relating to long-term care residents rights. If you or a loved one need assistance regarding LTC residents rights, contact your local LTC Ombudsman office which can be located at the National Long-Term Care Ombudsman Resource Center.
Part 2 of this series will deal with the illegal practice of requiring residents to sign a Waiver of Liability prior to being admitted to a facility.
How many of you have been hurt by something someone said to you without words?
To get you started, I’ll provide a couple personal examples:
Growing up, I was always taller than most kids my age; with my height, came big feet. Although I’m now in my early 60s, I still remember how it felt at approximately thirteen years of age when, while standing in line at a movie theater, an adult looked me up and down and then focused on my feet. She turned to her companion, nudged her, laughed, and held her hands apart, as though measuring the size of my feet. How do you think a gangly self-conscious young teenager felt about that situation?
As a manager for an assisted living/dementia care facility, I wore many hats – especially since the executive director of the facility was extremely ineffective as that building’s director. One day I found myself rushed beyond all measure and needed to get in touch with the Health & Wellness Nurse whom I knew was in the secured dementia wing of the building. I entered that wing at full-bore, with single-purposed intent, ignoring the dazed residents I passed in the hall, leaving a wake of distressed residents behind me. One of those residents somehow caught up with me and grabbed my arm, “What’s going on? Is there an emergency? Do we need to evacuate? Will you help us?” Shame on me. Without a word, I caused aggravation in someone who was the unfortunate recipient of my careless behavior.
How many of you have spoken volumes to someone without saying a word? Did you speak love, patience and comfort, or intolerance, annoyance, and anxiety?
Which would you prefer to receive?
Which would you prefer to offer?
Ending life on your terms | Opinion | The Seattle Times. by syndicated columnist, Froma Harrop.
Being prepared, well in advance of needing to be, will serve you well.
All our lives, we set out on new adventures having prepared for them to the best of our abilities:
- First day of school;
- The start of a new job;
- Preparing for a first date;
- Wedding preparations;
- Organizing a Holiday meal;
- Even something as mundane as putting together a grocery shopping list.
We know how to be at our best, and being at our best means painstakingly and carefully preparing for important events in our life. You didn’t personally have the option of preparing for your birth, but you do have the option, right now, to prepare for your death.
What does it mean to end our life on our own terms? This doesn’t have to be a controversial topic. I’m not talking about assisted suicide/right to die matters. What I am talking about, however, is the importance of each of us to spell out in painstakingly and carefully prepared language, all that you want done – or not done – when you are determined to have an irreversible fatal disease.
Death is such a taboo subject.
Why is that? None of us will avoid the inevitable, but many of us avoid laying down our wishes regarding that final time in our lives. The subject matter of the attached article relates to medical insurance companies reimbursing medical professionals for end-of-life counseling provided to their patients. I repeat, this counseling is not controversial. As Ms. Harrop states, “Critics of end-of-life discussions argue the doctors would ‘push’ patients to end their lives prematurely. Why would doctors do that? Where’s the financial incentive in losing a patient?”
The report Dying in America calls on Congress “to end the ‘perverse’ financial incentives that rush fragile patients into invasive medical treatments they’d prefer to avoid.” That being the case, it seems to me that counseling a patient about their dying wishes hurts, more than helps, the physician’s bottom line, so forget the nonsense about doctors encouraging patients to die sooner than later. That’s just hogwash.
“Meanwhile, there’s evidence that for some very ill people, a palliative approach may extend life longer than industrial-strength medicine.” And certainly ones final days without the poison of chemotherapy that has no prospect of curing a cancer, would be far more comfortable than if that therapy had been employed. “In a study of terminal lung cancer patients, the group that chose hospice care actually lived three months longer than those subjected to hard chemotherapy.” Again, that would be a more pleasant exit from this life than suffering the ravages of a chemo treatment that is not curative in nature.
“An end-of-life talk with a doctor spells out the options. Patients can use it as a basis for filling out an advance care directive – a form listing which treatments they would want or not want.” And let’s not forget that such a document only comes into play if the patient can no longer speak/express his or her wishes regarding their care. An advance care directive is a legal document and as such, spells out when it can be put in motion, and when it can not. If ever there’s a time when you can benefit from being a control freak, your final days is it.
This legal document is not just for the older population.
Once you’re considered an adult, you can decide what you want regarding your life. Don’t wait until it’s too late and someone else decides medical matters without your input.
Did you ever get so busy that you received an award and didn’t go pick it up, and then you forgot that it was waiting for you? That’s me. Lori, one of my most favorite bloggers, has been writing her blog Let’s Talk About Family since December 2011. This fabulous person nominated me for the Best Moment Award in May of 2013. All I can say is that not “picking up” my award qualifies me for the Worst Moment Award, but I’ll try to make up for it with this post.
Lori’s blog family history starts with her mother’s failing health and death, and continues with her father’s life as a widower who eventually moves into an assisted living facility (ALF). Her blog is one that I never miss. You know how you can manage the notifications you receive so that you get a notification e-mail immediately, daily, or once weekly? Her blog is one of those that I receive immediate notifications – I can’t wait any longer! is the way I treat her blog. Thank you so much for opening up your life to us in the blogging world.
Rules for the Best Moment Award:
Winners post information about the nomination, thanking the person who nominated them, with their acceptance speech that can be written down or video recorded.
Winners have the privilege of awarding the next awardees (see below) The re-post should include a NEW list of people, blogs worthy of the award, and winners notify them the great news. Winners should also post the award badge on their own website.
What makes a good acceptance speech?
Thank the people who helped you along the way, be humorous if you can to keep the reader entertained and smiling. Provide inspiration that helps your story to touch the lives of others.
And here’s mine: I’m thrilled to be acknowledged as having something good to say from time to time. I don’t think I’m an excellent writer, but I do have lots to say and I’m quite willing to write up a storm. I’m the youngest of three siblings and the only one of us who has been involved in the lives of senior citizens – and everything that involvement implies – for close to two decades. I’ve always loved people older than me; I guess it gives me comfort knowing that I’m younger than someone else. My official responsibilities over the years involved: working in the senior housing industry both in the corporate environment and in assisted living/memory care facilities, being an Alzheimer’s Association caregiver support group facilitator, and a Certified Long-Term Care (LTC) Ombudsman for the State of Washington (an advocate for vulnerable adults living in LTC facilities.) I’m retired from active work but I am actively still involved in being an advocate for the vulnerable by writing my first novel – a project I hope to complete by end of this year. My novel focuses on the lives of family members who care for a loved one with Alzheimer’s or other dementia.
My nominees for the Best Moment Award are:
Kay Bransford, for Dealing with Dementia. The reason I enjoy Kay’s blog is best described by her blog’s subtitle: A family caregiver’s journey to deliver loving care with grace and humor. We all know there is absolutely nothing humorous about Alzheimer’s or other dementia, but humor can be found in the human interactions between caregiver and family member. If you look for them, you will find them. Kay, I’ll be posting my acceptance of a different award you recently nominated me for very soon. THANK YOU!
Dementia Poetry is an in your face journal of a daughter-in-law’s disease journey with her mother-in-law, in the form of extremely well-written poems. The subtitle for her blog is: The Politically Incorrect Alzheimer’s Poetry Blog.
Theresa Hupp’s blog, Story and History, is a moving journal of a family’s life covering past, present, and future. But that’s not all: Theresa is a fabulous, published author. I’d say I’m jealous, but friends, and that’s what I consider Theresa, don’t turn green with envy – at least they shouldn’t. Theresa, you nominated me for the Versatile Blogger Award in February of 2014, but I already received that award a couple years ago so I’m not going to claim it again, but I thank you profusely for nominating me.
Reflections on Dementia, Caregiving and Life in General is a must-read blog all the way from Singapore. This blogger takes care of her mother who has Alzheimer’s and vascular dementia. Her insights and her view of her world will engage you from the very first posting you read.
What a horrible title for an article.
It’s also a horrible concept, don’t you think?
But many with dementia are dead inside without any means of engaging with others in meaningful conversation. Heck, they might not even be able to talk to themselves: a practice I engage in quite frequently.
What an isolating state to be in: you’re there, but not there.
Fortunately, those with Alzheimer’s, dementia, or other cognitively restricting illnesses, have a chance to awaken their memories – and therefore their history – but not without the tools to do so. Alive Inside, the 2014 Audience Award winner at the Sundance Film Festival, is a one and a quarter hour documentary film that touts the benefits of personalized music therapy for those who are living dead inside.
Dan Cohen, social worker, Founder and Executive Director of Music & Memory, started this awakening project several years ago. Here is a description of the project, taken from the film’s website: “Music & Memory … promotes the use of digital music players with individualized playlists to improve the quality of life for elders, regardless of their cognitive or physical status … Dan has spent most of his career helping individuals and organizations leverage technology. Music & Memory operates in hundreds of long term care homes across the U.S. and abroad.”
Watch the 2.15 minute trailer on the provided Alive Inside website to witness a few of the individual awakenings spotlighted in the film.
Even if the film is not scheduled to appear in your area, you are still able to help awaken the millions of people in the United States and abroad by your participation in Mr. Cohen’s project. Whether it’s feet on the street or a click of a mouse to donate funds, each of you can become a part of these efforts.
Additionally, if you know someone, or are caring for someone with cognitive decline, put together a personalized database of music for that someone in a digital music storage device, then connect them to it with a set of headphones. You might be able to awaken him or her with that simple effort on your part.
“Someone else will step in.”
“My God, this is horrible; someone should really do something!”
That someone is you and me.
In the attached article from today’s Seattle Times newspaper, Pulitzer Prize winning columnist, Leonard Pitts Jr., poses a question that all of us should readily be able to answer. If you see someone in need of help, do you wait for someone else to do the right thing, or do you step in? Do you need to look to other people, watching the same emergency situation as you, to receive the correct “cue” as to what is required of you? No, each of us should assume that if I don’t help this person, no one else will. That’s what Martin Luther King Jr. encouraged us to do when, during one of his speeches, he relayed the story of the Good Samaritan from the Bible.
Pardon my paraphrase, but his message went something like this:
When I happen upon someone in obvious need of assistance, instead of hesitating and wondering what will happen to me if I render assistance, I should be asking myself, “What will happen to this person if I don’t stop and help?”
Some needs are obvious as detailed in one of the stories in Mr. Pitts’ article: Just outside of a New Jersey McDonald’s restaurant, a female McDonald’s worker was savagely beaten by a co-worker who was upset because the other woman gossiped about her. During the beating, no one stepped in to help. While the crowd exclaimed over what they saw – and even took photos and videos of the beating – the only person who came to this victim’s aide was her two-year old son who did what he could to get the mean woman off of his mommy. Not one person at this McDonald’s eatery called 911. I encourage you to read Mr. Pitts’ account to learn the outcome of this story.
Some needs aren’t as evident: in the heat of a summer’s day, you see an elderly man walking down the street when you leave the house to do some errands, and on your return trip a couple hours later, this same elderly man is sitting on a boulder at the side of the road – a bewildered look upon his face. That’s when you need to trust your gut. You say to yourself, “This isn’t right. This guy must be lost and most certainly could be dehydrated,” and so you pull over the car. I wrote an article last summer on this very subject matter, Trust your gut!, resultant from an experience that reinforced my belief that if something feels wrong, it is wrong.
Whether a need is obvious or not-so-obvious, you’re the someone who needs to step up to meet that need. Life is too precious to be an apathetic bystander.
Malaysia Airlines flight 370 is us.
What these two disasters and many like them have in common is that billions of us can say that they didn’t happen to us. I live in a suburb of Seattle, approximately 60 miles south of Oso, Washington – the town that was buried by a landslide that killed at least twenty four people as of this writing. This landslide didn’t physically happen to my town of Redmond, Washington, but it did happen to us.
The crash of Malaysia Airlines flight 370 took the lives of 239 people and affected thousands of people who lost one of the 239. This crash appears to have happened over the Indian Ocean, many, many miles away from where you and I live, and most of us can say that we weren’t connected to any of those victims, but we would be wrong, because that crash happened to you and me as well.
I don’t take comfort in the fact that so many of the disasters that occur in the world haven’t personally or physically happened to me. There is no distinct separation between me and those pointedly affected by the tragedy that has inserted itself into their lives; no safety shield between my location, and theirs. They are me, and I am them.
It is far too easy to sit comfortably at home and simply be grateful that such tragedies didn’t directly happen to me. You know that saying, “There but for the grace of God go I.” I think the intent of that statement is well-meaning but it must be said and felt purposefully so that we truly recognize that another misfortune, at another time, could be our own. All of us are vulnerable, and we are all connected. What happens elsewhere, happens to us.
The reason for this article is to express my hope that all of us, wherever and whomever we are, may more readily and clearly identify with all of humanity: the “them” or “they” to whom tragedies befall.
Empathy trumps distance, nationality, or circumstances.