Family issues
Caregiving 101 through 1001
I’ve written several articles over the years about the importance of assembling a caregiving team when caring for a loved one – a team that doesn’t necessarily rely on family because not everyone has a participatory family when it comes to these matters. Of all the life-changes we encounter during our journey, caregiving is one of – if not the most difficult – speed bump to get over.
Caregiving: the ultimate team sport suggests how one might use the strengths of each team/family member to handle the varied needs during the caregiving journey.
Family dynamics that hamper caregiving success exposes the need to let go of stereotypes or childhood roles that don’t serve siblings well as adults. If ever there was a time to work together for the greater good – taking care of a family member with dementia or other terminal illness – this ranks right up there at the top.
Solo caregiving addresses the needs of the person who appears to be strapped with fulfilling all the roles needed for a successful caregiving venture. As the sole caregiver, you need not settle into those roles, not without the help of other, well-meaning individuals. Certainly, much relies on the neighbor, coworker, even casual acquaintance, but said entities are a resource from which much assistance can be found.
And here are several more articles for the caregivers out there – and those acquainted with a caregiver – to provide some wisdom and encouragement through the tough times: Read the rest of this entry »
Our school of hard knocks: life
Okay, my life isn’t always crappy, quite frankly, it’s rarely crappy. I’ve had a great life and I certainly can’t complain too loudly. But I’ve learned many things in my umpteen years of life, one of which is that there are teaching moments – and teachers – all around us and if we’re diligent students, we’ll learn something new now and then.
Dr. Bernie S. Siegel in his book 365 Subscriptions for the Soul, brings up this topic in one of his daily meditations. He starts out by offering the following Taoist quote:
When the student is ready, the teacher appears.
Why I love the internet
Sure, it’s convenient and very utilitarian for our every-day use. As a writer, I benefit greatly from an online Thesaurus to use alternate words. Case in point, there’s gotta be a better way to say, “Colleen got angry (irked, vexed, indignant, apoplectic, choleric) when traffic made her late for her hair appointment.”
And among the many other reasons for which I use the internet, I count on it for quick access to a recipe for an I’m too exhausted to be creative meal on a Monday night or in the alternative, a restaurant that’s not too far away from home and can seat us at the last minute. Bottom line, I take full advantage of what the inter-web has to offer.
But the biggest reason I love the internet is that it reaches anyone who has access to any type of computer device – especially those in need of some sort of assistance when sorting out the difficulties of life. My need for a dining alternative pales in comparison to someone searching for help when caring for someone with a debilitating illness.
One of the blogs I follow: My Dementia Experience, is written by a woman, NorCalMom, who takes care of her mother-in-law. This delightful caregiver also has five children of her own. But NorCalMom jumped into caregiving with both feet in 2013 when Marie, her mother-in-law, moved in with her and the rest of her household because of Marie’s advancing dementia. Reading just one of this blogger’s posts will show an outsider what types of challenges NorCalMom faces on an ongoing basis.
As caregivers, and I’ve been one as well, we oftentimes “wing it” when it comes to handling the day-to-day, and shockingly acute, issues that occur during our caregiving journey. The unpredictable nature of Alzheimer’s or other dementia makes even the most mundane activities frustratingly impossible to handle with only a layman’s knowledge of providing care. For example, how does one communicate with a person who can no longer understand what is said to her and who can no longer respond cogently to questions proferred by their primary care person?
Caregivers need psychic powers to unravel the mystery of care providing. Or do they? Read the rest of this entry »
Focus on Caring: raising children who care
Source: 7 Ways To Help Your Kids Embrace Kindness – By Lucy Martial
We’ve all heard the admonishment that we should lead by example. The intent of that statement focuses on providing good examples for not only our own children and grandchildren, but also our neighbors’ children, school students, and all other young people with whom we come in contact. The final increment of this Focus on Caring series suggests that adopting an attitude of caring is best started at an earlier age.
If we live in such a way that our words and actions positively influence the younger set among us, we are to be rewarded. But if our actions negatively influence children, we’ve done them – and the world – a grave disservice.
The article attached above from the Kindness Blog – a website that ONLY provides stories that focus on kindness – lists seven suggestions for effectuating kindness in children.
My article focuses on two of the article’s very apt suggestions: Read the rest of this entry »
Perfecting our life’s target practice
Dr. Bernie Siegel, 365 Prescriptions for the Soul, provided the following regarding the art of focusing on the right target for our lives. The first quote is very timely advice by the late, great, Yogi Berra:
TARGET PRACTICE
You got to be careful if you don’t know where you’re going, because you might not get there. – Yogi Berra
Your target in life helps you to direct your course. So before you aim, be sure you choose the right target.
What are you aiming for? What is your goal? What goals are you trying to achieve? What are you trying to hit? These are the questions you need to ask yourself, because they tell you your direction and where you will end up.
The more target practice you engage in, the more likely you are to hit the bull’s-eye.
SOLUTION OF THE DAY
Take the time to refocus on your target. Ask the questions often to be sure to hone in on your center.
Our life: an ongoing parade
Here I go again, relying on Dr. Bernie S. Siegel to provide some wisdom for your day, but what can I say, his 365 Prescriptions for the Soul catches my attention more often than not and when it does, I like to share the good stuff I find. The following is provided verbatim:
Parade of Life
Forget past mistakes. Forget failures. Forget everything except what you are going to do now, and do it. – William Durant
Life is a parade. Sometimes we march along and realize we have passed by what we were looking for. What do we do? Stand there and drop out of the parade? March on with regrets? Feel bad about how we looked or that everything we wanted was on the wrong side of the street? It’s passed! Forget it and march on!
Sometimes our parade isn’t so pretty, and the crowd isn’t interested in us. If we drag everything we have passed with us, we will destroy the present. We have no future when we live in the past.
We even talk about past lives. Whether you believe in them or not, the same principle applies. If you are living a past life, you are destroying your present one. In therapy, people come to understand why they are acting the way they are and how the past is affecting them. They learn to let go, move on, and not sit in the same classroom year after year. They graduate and commence a new life.
A closing comment by this blogger:
The good news is that we can learn from our past, both the good and the bad. But if we stay cemented in the past and don’t move on, that parade Dr. Siegel talks about? It’ll pass us by.
I don’t know about you, but I don’t want to get left behind.
Time to recognize & bolster family caregivers
The proposed Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act would require the development of an integrated national strategy to provide resources for under-served family caregivers in the United States. If you are not currently a caregiver for a loved one, you most likely will be, and no doubt you know of someone who is already an unpaid caregiver (as opposed to a hired caregiver) for a person in their family.
Source: Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act – AARP
Many families, even those with young children, find themselves thrust into the role of caring for a loved one when they least expect it and can ill afford to. Caregiving for a child or an adult with disabilities, or caring for an adult with a debilitating illness, has become the norm for many in the United States and abroad.
These caregivers “prepare meals, handle finances, manage medications, drive to doctors’ appointments, help with bathing and dressing, perform complex medical tasks and more – all so loved ones can live at home.”
Keep in mind, the above tasks are those they were already performing for their own household, tasks that multiplied exponentially with the increased needs of their disabled or ill family member. Add a job outside of the home to all of that, and you have to wonder how these overworked and over-stressed heroes manage at all! Read the rest of this entry »
Focus on Caring: Boundaries that constrain us
How are you defined? What kind of box would you fit into? Here are a few characteristics some might assign to me:
- White American
- Baby Boomer
- Pacific Northwest resident
- Wife
- Mother
- Sister, aunt, niece, cousin, friend
- Seattle Seahawks super fan
All items on that list are correct but if that’s all that people see about me, they’ve greatly reduced the trueness of who I am because my box also contains the following:
- spiritual but definitely not religious person
- free-thinker (is that redundant?)
- writer of things that matter to me
- advocate of the elderly and just about everyone else who crosses my path in life
Setting boundaries between who I am, and who you are, benefits no one.
Leonard Pitts, Jr. spoke at a TEDx event in February of this year. His 20 minute talk, The Boundaries We Choose, is readily available on YouTube so I strongly suggest you seek it out. He suggests, “Our labels shouldn’t define who we are and place us in a strict box.” He then spoke of labels one might put in his box: African American, Christian, Husband, Father, Fan of the LA Lakers. If you’ve read any of Mr. Pitts’ literary pieces in the Miami Herald or any of his books, you already know that he is more than the contents his box may imply. (To be sure, there is a very valid reason why he was named the 2004 Pulitzer Price Winner for Commentary.)
During his February TEDx talk, he provided a fabulous story that illustrates the downside of labels or identifying markers. I’ll let you discover that beautiful and clarifying story by watching his TEDx video, but for the purposes of this blog posting, I will provide you with one of his statements from that video.
Our bonds are more than connecting with certain markers that define people.
Examine, if you will, your way of describing something that happened to you during the course of your day.
When you relay a story about a person taking his or her time in line at the Starbucks store, holding everyone up for far too long a time, do you define the person this way?
This Asian woman in front of me acted like she owned the damn place. She was so selfish, taking her damn time ordering her fancy drink when all I wanted was a damn cup of brewed coffee.
Or did you simply say
This damn person in front of me took so much time ordering a fancy damn cup of coffee that I just about ran out of time to get my plain and simple cup of brewed coffee.
Alzheimer’s caregiving: The Art of Lying
Alzheimer’s Australia | Therapies and communication approaches. Caregivers have it hard enough without having to crawl through the maze of ethical versus practical when it comes to communication.
The above article provides a clear perspective of the challenges inherent with taking care of someone whose reality doesn’t come close to matching that of the caregiver.
Whether you are an unpaid caregiver – someone who cares for a friend or a loved one – or a paid caregiver providing services for which payment is received, you need to embrace the art of lying for your benefit, and that of the person for whom you provide care.
I feel so strongly about this matter, that over the years I’ve written several articles proposing one engage in the fine art of half truths, omitted truths, and out and out lying to save the day.
Here are two articles I think you will find of interest, articles that might just infuse you with the strength to take the low road from time to time:
Good citizenship starts young
Operation Good Citizen: Teaching Kids to do the Right Thing in 2015.
A recent article in Parade Magazine spotlighted the efforts of older adults mentoring children on how to be good citizens. Specifically, Veterans and Congressional Medal of Honor recipients volunteer as mentors in schools across the nation.
The article emphasizes the point that parents and other adult family members should be the main source of such teaching – teachers have enough work to do just getting our children educated – but with a little bit of reinforcement at school, the lesson becomes that much more vital to the young learners. Read the rest of this entry »
Single ladies, this one’s for you
What do you look for in a man? I did a wee bit of internet research and gleaned some listed qualities from websites such as Ask Men, Men’s Health, and Psychology Today. Here are a few of the qualities listed:
- passionate
- humorous
- faithful
- dependable
- mysterious
- exciting
- kind
- generous
- confident
- good job
All but two of those qualities were on my list when I was looking for a husband. Maybe it’s just me, but a man who’s mysterious seems to cancel out a few of the other list-worthy qualities above. Additionally, I think exciting is completely overrated.
I hit the jackpot when I met my husband.
I don’t wanna brag … who am I kidding, I really wanna brag about my choice in life partners.
Sexual intimacy in memory care
The attached New York Times article by Pam Belluck addresses the ambiguous loss experienced by men and women whose spouses are still alive, but not fully there. More specifically, it addresses the need for intimacy that still exists for the spouse without cognitive decline, and that can also exist for the spouse with the decline.
It is a well-known fact that advancing age doesn’t mean the end of desire for sexual intimacy. Whether in the privacy of ones home or in a long-term care housing situation, sex is alive and well. Even people with varying degrees of dementia maintain the desire for intimacy. What the above NY Times article so carefully exposes, however, is that sometimes the act of consent for such intimacy can be a subjective one when viewed by a third party. Read the rest of this entry »
Setting aside our perceived limitations
Earlier this year, Richard Glatzer, co-director of the award winning movie, Still Alice, died at the age of 63 after battling ALS for four years. It would have been unfortunate if he had gone with his first reaction when approached to adapt Lisa Genova’s novel into a movie. (Evidently, he almost turned down the project.) Fortunately for us, he did not. One article on this subject indicated that it was Glatzer’s personal connection to independence-robbing illness that gave Still Alice a greater authenticity.
From what I understand, Mr. Glatzer used one finger – using a text-to-speech app – to communicate every directive. I don’t have to know anything about film directing to understand that doing so with his “limitations” would have been extraordinarily clumsy and time consuming. I wonder if his decision to accept the project was made in part because he believed he was the best person for the job. Did you see the movie? Wouldn’t you agree?
Yet all of us are faced with far less daunting struggles than those experienced by Mr. Glatzer and we cave in to our well-honed ability to find every reason not to pursue a task that requires exceptional action on our part.
I’m ashamed of all the excuses I’ve come up with to postpone – or to avoid entirely – new ventures that required more of me than I was willing to give. Ugh – I grieve those lost opportunities when I think of the benefit to me and others such ventures would have provided. But crying over spilled milk won’t undo the past.
Going forward I can commit to seizing new opportunities and disregarding the emotional and physical hurdles in my path.
I can, but will I?
Will you?
Renaissance – Baby Boomer style
Abby Ellin, New York Times, writes about the late-life renaissances that many Baby Boomers experience when they re-decide what they want to be when they grow up.
When we were younger, many of us drifted into college studies and post-college careers that may or may not have been our first choice but at least paid the bills. As we near retirement, or even years before retirement, we wonder, “Is this all there is?” And when we wonder like that, we get dissatisfied, and when we get dissatisfied – if we’re gutsy – we’ll do what it takes to become satisfied. If we don’t attain our desired level of satisfaction, we’ll languish: lose vitality, grow weak, and become feeble. My oh my, is that what you want? Read the rest of this entry »
Requiem for the status quo
Allow me to reintroduce myself:
My name is Irene. I am the author of the upcoming novel Requiem for the status quo.
Some of you know me as a family member, friend, or casual acquaintance. Others are familiar with me as the author of this blog, a writer who has posted hundreds of articles over the past several years. Still others know me because of my professional connections as a volunteer advocate for vulnerable adults living in long-term care (LTC) facilities, or because of my years as an Alzheimer’s Association support group facilitator.
I’m here to announce that in addition to being the family member/friend/acquaintance/volunteer/co-employee of the past and present, I am also the novelist who has something to say.
“Oh my gosh Irene, I didn’t realize your book was already published!”
It’s not, but I’m actively pursuing agent representation by contacting several agents per day until I no longer need to.
“Why should people be interested in your book?”
Because I have an engaging way of writing about Alzheimer’s disease – a disease that will affect each and every one of you because until a cure or vaccine is developed to eradicate it, this disease is here to stay. Whether a person’s diagnosis falls into the actual Alzheimer’s category, or into one of several other dementia such as: vascular, lewy body, frontal temporal, Parkinson’s, or dementia resultant from a traumatic brain injury (TBI), there’s no escaping its effect on the unpaid caregiver (that’s you and me) and the person being cared for (spouse, partner, mother, father, brother or sister).
And here’s a fact of which some of you may not be aware: Alzheimer’s is not just an older person’s disease; an increasing number of people are being diagnosed well-before the age of 60.
“Say it isn’t so, Irene.”
I can’t do that. What I can do, however, is tell you a wee bit about my book: Read the rest of this entry »
A loved one’s move into memory care
An Alzheimer’s Love Story: The First Day of the Rest of My Life.
I hope you’ll watch the attached 4 minute video that chronicles a husband’s experience of moving his wife into a memory care facility.
This is not a decision that comes easily to anyone.
Think about it. You’ve spent decades living with the love of your life. Your days are structured around each other; the ebb and flow of all those hours are what you crave and enjoy.
You are faced with what will most certainly be an irreversible decision to leave your wife in the hands of others. You feel guilty, regardless of how well-informed and appropriate the decision. Read the rest of this entry »
The first Valentine’s Day without your loved one
The first Valentine’s Day without your loved one..
I’m re-posting this article I wrote back in 2012 that discusses one of the many “first times” survivors go through after the death of a loved one.
My article contains a link to another blogger’s article in which he discusses the experience of his first Valentine’s Day without his wife. On a personal note, that blogger is my brother, a man who came through that period of his life a survivor. Although he still misses his wife who died of early-onset Alzheimer’s disease at the age of 69, he can now look back and relive the memories of the numerous happy celebrations they both shared throughout their almost 25-year marriage with gratitude and hope for the future.
When being a control freak is a very good thing
Think of a very uncomfortable subject that you don’t like to talk or even think about.
By any chance was that subject death?
If it is, you’re not alone. Given the option of getting a root canal or talking about our eventual demise, many would leap into the dental chair. Why? What’s so yucky about death? It’s an inevitable outcome of our life experience here on earth. To my knowledge, no one has successfully hidden from the grim reaper when it came knocking at their door. So what’s the big deal? I’ll tell you what’s the big deal.
A Super Bowl loss is not a matter of life or death
It may feel like that, but it’s really not. Win, Lose or Draw, it’s (only) a Game – Not a Matter of Life or Death – by Dietrich Gruen (Hospice Chaplain).
Dietrich Gruen, the author of the attached article, is a Green Bay Packers fan. My team, the Seattle Seahawks, beat his team in the game he references in his attached article. When I’m on the receiving end of a victory, I’m always cognizant of the fact that when I’m celebrating a win, there are those who are bemoaning a loss.
Well, let me tell you, the football field is a great equalizer, as was evident yesterday when the Seahawks lost the Super Bowl to the New England Patriots. It was a devastating loss, but it was not life-changing.
Sure, it may change some aspects of some of the Seattle team members’ lives, but it won’t alter what is truly valuable: life itself. With several hours separation between Seattle’s shocking loss and now, I’m able to re-categorize that loss as a speed bump. Read the rest of this entry »
Caregiving and the Super Bowl
This is NOT an article about football. Anyone who has a loved one for whom they provide care – whether hands-on or peripheral – knows all too well how unpredictable life can be with that 24/7 responsibility. We’d all like to think that special occasions and events are immune from medical emergencies and other disasters, but all too often that is not the case.
Welcome to the life of a caregiver.
I honestly didn’t think I had another football article in me but the unfortunate circumstances in my best friend’s life have proven otherwise. Read the rest of this entry »
Teamwork: playing nice together
As a child, do you remember being admonished to “play nice together” with your siblings or friends? Or perhaps you’re a grandparent who has encouraged your grandchildren to behave better with others by using that same phrase. I like it, and I think playing nice together needs to be a part of our daily life strategy. Read the rest of this entry »
If Alzheimer’s disease isn’t a secret, then why are we whispering?
Alzheimers Research Funding Lags Other Diseases- Dementia – AARP. The January/February 2015 AARP Bulletin focuses on the prevalence of Alzheimer’s disease in America. The cover contains photos of fifteen celebrities who died from the disease. Some of those spotlighted may surprise you because their cause of death was not broadcast to the media.
What a shame.
It’s a shame that the stigma attached to the disease still manages to relegate Alzheimer’s to the closet. Cancer used to be that closeted disease – so much so that many years ago people shied away from even mentioning the word, preferring to call it “The Big C.” Before Alzheimer’s disease, cancer was the whispered disease but now the populous embraces each and every body part afflicted, even those considered of a private nature: breast, ovary, prostate, rectum. Read the rest of this entry »
Caring for our elders
9 Reasons why it‘s important to care for our elders – by Sai Santosh K.
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 »
Welcome to the year 2015!
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 »
Do you believe in magic?
My December 29, 2012 Horoscope:
Today is a 7. Now’s perfect to start a new writing project; no need to wait until next year. Put down your thoughts without worrying about form, one word at a time.
Prior to 12/29/2012 I would have stood by my belief that Horoscopes are merely faulty predictions by faulty people provided to those of us who are humored by such baseless declarations of personalized present and future outcomes.
But that personalized declaration for Irene on a day in late December 2012 was right on the money.
The backstory: During the summer of 2012 I made the decision to write a novel that focuses on the lives of caregivers of loved ones with Alzheimer’s and other dementia. The focus would be split with equal attention spent on the person with the disease. My book’s mission: to put a personal face on those every day people (that’s you and me) thrust onto the memory-removing disease journey. Once I made the decision to write a book, I set January 1, 2013 as the start date for my project.
That start date was moved up based on the extremely accurate Horoscope (see above) for this wannabe author whose birthday fell under the sign of the bull: Taurus.
I obeyed the directive and sat at my computer that very day and managed to write page after page of content. Wow! I’m writing a novel! It was quite exhilarating being able to spew page after page of fictional story line based on experiences I had with my father, my sister-in-law, and the many people with whom I became acquainted during my years of work with vulnerable adults.
I finished the “final” version of my manuscript earlier this month and set the timeline for next steps: starting January 1, 2015 I will actively seek representation for my novel. Oddly enough, that seems to jive with today’s Horoscope (2 years after the first timely Horoscope) if you force a few of the jigsaw puzzle pieces to fit what’s currently going on in my life.
My December 29, 2014 Horoscope:
Today is a 6. Hide away somewhere peaceful and you can get some productive thinking in. Inspire intuitive leaps. Creative work pays well now. Don’t squander an enticing opportunity. Meditate on it, and your choice comes to you. Nurture your physical health with exercise, good food and rest.
I guess I may as well get to it based on previous personal declarations that brought me to this stage of my writing career. Seriously, why wait when I can do it now?
If you’re interested in how this all pans out for me, I hope you’ll Follow my blog for updates. If you’re already a Follower, stay tuned for more predictions and/or fabulous outcomes.
My wish for you: joy in good measure
It’s always a pleasure putting my thoughts and words out there to those who follow me and to those who, by happenstance, land on my site. Either way, I’m grateful for your attention.
Some of you are anticipating a joyous Holiday experience.
Others are biding their time wishing the season would quickly pass them by, especially now that they are constantly bombarded by good vibes that they believe have no chance of alighting on them.
If joy is your portion this season, please share your delight with those who are lacking – either directly, or through your projected good wishes and thoughts. I strongly believe that positive energy has a way of catching up with those depleted souls in need of a boost.
Sometimes our light goes out but is blown into flame by another human being. – Albert Schweitzer
I have some light to spare, do you?
As relationships move online, neighbors become more vital
Lately, it seems everywhere I look I read articles about the importance of neighborhood connections. In the past few days I wrote two articles specifically addressing that concept: The importance of good neighbors, and Positive community activism.
The attached article above, written by Froma Harrop, compares today’s community with that which existed in the movie It’s a wonderful life, an annual Holiday classic. George Bailey’s bank customers and neighbors were people with whom he had a connection, “of varying incomes, education, and ethnicity. Each of them was an individual, not just a useful provider of a good or service.” Ms. Harrop goes on to say that the middle ring of society – as existed in George Bailey’s life – has been weakened over the years. Her article outlines her belief that social media and e-commerce are responsible for that societal change.
Here’s an article excerpt that further explains the phenomenon:
Marc Dunkelman writes of the fading town-based model of society in his book, “The Vanishing Neighbor: The Transformation of American Community.” The middle ring, he says, was “where communities of people with different skills and interests, disparate concerns and values, collaborated with their neighbors in the pursuit of the common good.”
Those middle relationships are what bind us together.
That’s what I want, and thankfully, that is what I have with the households in my neighborhood where that connection exists. Eva and Ian across the street, Irma and Larry next door to the south, Simone and Gareth, our New Zealand next-door neighbors to the north, and Patty and Bob just around the corner, all represent my middle ring of people who collaborate for the common good.
If you live on the outside of that ring, I encourage you to make your way into the center, and bring your other neighbors with you.
(all images courtesy of Pixabay)
Long-term care residents’ rights: Part 6
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.
Long-term care residents’ rights: Part 5
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.
Long-term care residents’ rights: Part 4
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.
Living: the ultimate team sport 