by Sue Anne W. Kirkham
How it all began:
It was late October when my husband, Jack, and I showed up at my father and stepmother’s townhouse to walk their two dogs—a duty we’d taken on several months earlier, after they announced they no longer felt up to the task. At 84, my father suffered from respiratory and circulatory problems; at 81, my stepmother showed early signs of dementia, with some Parkinson’s-like tremors erupting, just to keep things interesting. I was determined that they not be forced by these circumstances to give up their pets. On this day, Dad greeted us at the door with another shocker. “We have to move into assisted living.” No hello. No how ya doin? Just this stark declaration.
Dad and Zelda had always been younger than their years in every respect. He continued his career as a psychologist into his late 70s, and the warm, witty, delightful woman he married in 1972 had always been active and ready for a new adventure. Each enjoyed absorbing hobbies, and they eagerly traveled the globe together for most of their 32-year marriage.
As Jack and I herded the pups that chilly autumn day, I remained troubled by the prospect of a radical change in lifestyle for my beloved father and stepmother. So I hatched a plan: leave my dreary clerical position and devote myself to lightening their load and injecting some sparkle back into their lives. I would carve out a new weekday vocation as companion/housekeeper/social director/exercise coach/assistant cook.
I kept a journal from Day One as, over the next 18 months, Zelda suffered incremental losses of mental acuity. Less noticeably, my father’s COPD was cranking toward a dramatic climax that none of us anticipated. While I focused on finding enough fingers to plug the ever-multiplying holes in the home-front dike, Dad’s staunch self-sufficiency propelled him through his own physical deterioration. Meanwhile, I watched Zelda—former organizer of Fourth of July kitchen band marches—fade into confusion. To be at her side through the slow, agonizing loss of her Self would prove to be the most affecting experience of my life. It soon became clear that the course I was chronicling was strewn with striking contrasts: moments of high hilarity and wrenching despair; snapshots of the struggle for dignity in the face of decline; arcs of mood between fear and optimism, gratitude and resentment. Hobbling my efforts to navigate these troubled waters was the crushing blow of friends and family members challenging my motives, questioning my trustworthiness.
This enterprise had much to teach me about life and death, human limitations, faith, and endurance. The struggle, as they say, was real. But the joys and rewards were every bit as genuine.
Why I wrote about it:
As my time with Dad and Zelda ended, a fresh commitment shaped my mission: I had been seeking a book topic I felt passionate about. This was that subject. I would share our experiences, unique amidst all the universal similarities, to promote understanding and support others confronting the challenge of caring for those who once cared for us. I chose the memoir format because, as dementia robbed Zelda of her voice, my journal became the story; it painted a complete and authentic picture for readers. Memoir also allowed for the interweaving of family history, a fleshing out of characters, and a means of affirming through narration the individual’s continuing worth, untainted by the loss of physical and cognitive abilities.
ABOUT THE AUTHOR
Sue Anne Kirkham is a freelance writer who blogs atwww.yourrecipesforlife.com. She has published print articles on aging and family relations as well as online profiles of inspiring everyday heroes, and essays on health-conscious living and the peculiarities of contemporary culture.
FOLLOW THE AUTHOR:
FOLLOW THE AUTHOR:
Author website: www.lovingzelda.com
Author Facebook page: @LovingZeldaCaregiving/
LinkedIn: Sue Anne Kirkham
This story warmed my heart in a very big way. The newly married bride is 103 and her groom is 100. Between the two of them, they have four spouses whom they loved dearly before they departed this earth. It looks like these two love birds hold the secret to happily ever after. Wait until you read about their Ohio-based love!
Who doesn’t like a little pampering now and then? A Stanwood, WA retirement community believes everyone should feel a sense of worth and pride when it comes to appearance, knowing that it’s not just how you look that is most important, it’s how you feel. I am quite certain you will love this story that celebrates the gift of volunteerism.
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.
I wrote this article five years ago and I’m posting it again today because it is one of the most viewed posts on my blog. Financial figures are five years old so current, 2018/2019 figures will be considerably higher.
I read a fabulous article in the “Home” section of today’s Seattle Times newspaper. It’s a throwaway section that I always read before I toss it into the recycle basket.
All of us are getting older – there’s no cure for that other than not growing older by leaving this earth before you’re ready – so where are all of us going to live – especially Granny and Pappy who can no longer safely live on their own?
Long-term care (LTC) facilities have priced themselves out of most households’ bank accounts and the alternative solution of having grandparent sitters is cumbersome and expensive in itself. What’s an adult child to do? If you have space on your property to have a guest house newly built or better yet, if you’re willing to turn your sunporch or guesthouse into accommodations for mom and dad, the original outlay of funds will pay for itself because you will have avoided the need for a facility’s ultra-expensive long-term care services.
One company that makes the pods spotlighted in the Seattle Times’ article is called Home Care Suites. Disclaimer: I am not advocating for this company’s product. I am merely pulling information out of the article and presenting it to the reader so you can do research that applies to your situation and your budget.
The pods made by this company range in size from 256 to 588 square feet with prices ranging from $42,000 to $83,000. This is no drop in the bucket but let’s consider the cost of facility care. Genworth (who sells long-term care insurance) states that the average monthly fee for assisted-living (AL) was $3,300 in 2012. I think that’s a very naive figure based on my experience of having worked in the LTC housing industry. Maybe Genworth’s lower number is just the cost for monthly rent – but what about care services? Cha-ching!!! Now you’re looking at double that amount and the cost will only go higher as care needs increase. But even at only $3,300 per month, that amounts to $158,400 for a four-year period. See how do-able the pod concept seems now?
Many of the AL service needs are simple monitoring of a resident – tasks that you can do for your loved one: waking them up, helping them get dressed, a certain amount of medication assistance, meal provision. Many seniors living in AL facilities don’t need the massive hands-on care of bathing assistance, toileting services, physical therapy, etc. I know for a fact that if a family member has the time – and a little patience – they can provide these lower acuity services on their own for quite some time before securing hands-on medical care for the elder member of their household.
Skipping ahead to after Grandma and Grandpa/Mom and Dad have passed on, you now are left with an added structure on your property which you can transform back into the porch or game room of its earlier existence, or simply leave as is as a guest room that may accommodate someone else in your family. I have to believe that your initial investment in constructing a pod is an investment that you won’t regret. And don’t forget – the costs for such a project aren’t necessarily out of your own pocket. Perhaps Grandma or Grandpa are willing to pull some of their savings out from underneath their mattress and contribute to the cost of this alternative living arrangement that would certainly be more attractive to them than a lengthy stint at an AL facility or nursing home. Just saying.
I have been closely involved in matters regarding Alzheimer’s disease and other dementia for eighteen years now: long-term care (LTC) housing, memory care, Alzheimer’s support group facilitator, and Washington State LTC Ombudsman. But it took me becoming a published author of a novel that focuses on a family’s Alzheimer’s disease experience before I finally found my Alzheimer’s community.
AlzAuthors is a group comprised of over 170 published authors (as of this writing) who have published fiction and non-fiction books reflective of their personal Alzheimer’s experience. The six members of the AlzAuthors Management Team (Team) is the Alzheimer’s community about which I speak.
The Team’s motto says it all:
We can sing a lonely song, or form a choir and create harmony.
Without exception, the authors featured on our site and each member of our Management Team had the experience of struggling with the learn-as-you-go-task of caring for someone with cognitive impairment. We all made mistakes, and we learned from them, but we also had successes, and we celebrated them.
As a recent addition to the AlzAuthors Management Team, I became even more convinced that my personal Alzheimer’s community resides within this group. The support, the kindness, the giving nature reflected within the Team is incomparable in my experience, and we are not just keeping it to ourselves. AlzAuthors is spreading their influence into numerous parts of the world…which is kinda why they asked me to join the team as their Global Outreach Coordinator. The six of us know our presence is evident in more countries than just the United States, but our imagination and passion is boundless so we have set out to become a household word in small and large communities throughout the world.
Why AlzAuthors? Because this 100% volunteer group has brought together some of the best books on Alzheimer’s and other dementia in one central location: our bookstore. We’ve categorized those books to make the personal caregivers’ or professionals’ shopping experiences an easy one with categories such as: Caring for Parents or Grandparents, Caring for Spouses or Partners, Living with Dementia, and Children and Teen books, to name a few. We know a caregiver’s “free” time is limited or non-existent, so we’ve done our best to make their shopping experience an easy one. They simply click on the cover of the book they’re interested in and they are taken directly to Amazon to make the paperback, eBook, or audiobook purchase.
We’re working hard so you don’t have to.
And finally, we understand the journey of unpaid (family & friend) caregivers because:
- We have experienced the loss of a loved one with dementia.
- We know the pain of being forgotten.
- We all have witnessed decline.
- We have provided countless hours of caregiving.
- We know many others have experienced the same and we believe in the power of sharing those stories.
This week’s kindness spotlights the Women’s Fiction Writers Association (WFWA) a fabulous group for writers of women’s fiction. Most if not all the administrative staff is volunteer – the reason why their kindness is this week’s selection. As a member of this organization, I was given the opportunity to have a podcast recorded for their Hear Me Roar program because I’m a debut author. Although my novel, Requiem for the status quo was released a year ago, it was my debut publishing effort.
This podcast is approximately 30 minutes in length, and although my novel is certainly the focus, much attention was spent on the prevalence of Alzheimer’s and other dementias in the world. Perhaps this podcast will keep you company on your commute in the next few days; although it may seem a bit choppy, I think it’s worth hanging in there to hear my, and the host’s, provocative discussion.
I was asked to write a story or two for an anthology of short, short, stories that would be read to seniors with cognitive impairment. I jumped at the opportunity. That anthology, The Mighty Ant, is now available in paperback on Amazon.
I am one of 33 contributors to this collection of short stories for seniors who suffer from dementia and other related memory or cognitive disorders. This book is the culmination of a project from editor and contributor, Jessica Bryan, who is a caregiver and advocate for caregivers. Several years ago she began to notice that her mother, who suffers from Alzheimer’s disease, lost focus and could no longer read lengthy books. Jessica began reading to her mother and found that simple, short stories were easier for her to understand. The Mighty Ant is filled with these kinds of fiction and non-fiction stories.
The proceeds from the sales of the books will be donated to a local Council on Aging. The generous contributions of authors like myself have come from all over the world. The result is a book with different perspectives, reminiscences, and tales that reflect not only local culture, but a variety of customs, ethnicities, and lifestyles.
I am honored to have my two stories titled, A Neighborly Friendship and A Sweetheart of a Story included in this collection. A Sweetheart of a Story was selected as the final story in the book because the editor felt it was the perfect selection to provide a sweet ending to the anthology. Buy a copy or ten or more for yourself and others…perhaps your local memory care community would love to include the reading of this book to their senior activity schedule! Currently only $12 for this 322-page large print storybook.
Today I celebrate an author friend who has been so supportive of my writing journey. Jill Weatherholt is a fabulous writer of inspirational romance novels. Second Chance Romance is the first in the Love Inspired series that will grab you from the very first page. The second in the series, A Father for Bella, will be released August 1, 2018, but is available for preorder right now. I already ordered my copy and can hardly wait for the continuation of a series that has warmed my heart and has me wanting more.
This delightful author friend of mine inspires kindness wherever she goes, and she certainly warrants a Kindness Friday spot on my blog today for it is today that Jill posted an essay I wrote that gives readers a peek at my personal caregiving experience with my father. You can view that post, here. I wrote about this personal experience of mine when Jill indicated she wanted to feature me yet again on her author site, and could I please write about a caregiving episode from my past.
It was my pleasure to do so, just as it is my pleasure to give you, my blog followers, a peek into this North Carolina author’s exceptional romance novel series. I certainly hope you will pick up your own copies of Jill’s two books in the Love Inspired series, and that you will perhaps gift others who also might be interested in receiving their very own copies. At the very least, be sure to share this post with your friends so they can have quick and easy access to her novels’ Amazon purchase links.
The best part about my own publishing experience has been the authors I’ve met along the way; what giving and loving individuals they have proven to be. My life is greatly enriched by them. Thank you, Jill, for your friendship.
- 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?
I discovered something shocking during the weeks that followed my novel’s release:
Alzheimer’s disease is still a secret.
I know; we’ve all certainly read about it, especially when a celebrity is diagnosed with the disease. Every once and awhile there might be an Alzheimer’s Association commercial on television…that is assuming we don’t fast forward through it or walk out of the room. Another reason we’re familiar with the disease is that it is happening to so many people with whom we are acquainted – whether intimately or tangentially.
But it’s still a secret. The very definition of the word speaks to its intent: adj. not known or seen or not meant to be known or seen by others; n. something not properly understood; a mystery. from the Concise Oxford English Dictionary
In many of my promotional posts and boasts for my novel Requiem for the status quo, I’ve indicated that my book tour would probably look more like a senior center tour than what is normally the route for authors: readings and signings in major and independent bookstores. That’s the tact I took, approaching numerous senior centers in Western Washington. 25% of those I approached booked my author event on their activity calendars. But when I approached a major senior housing community foundation to get on their speakers’ calendar, I was told the residents pushed back at the foundation’s previous efforts to enlighten and inform when they hosted those who spoke to the reality of Alzheimer’s disease and other dementia.
Writing a novel just for the hell of it isn’t what I did when, on December 29, 2012, I started to write REQUIEM FOR THE STATUS QUO.
First and foremost, I sat down at my computer because I had something to say about how Alzheimer’s disease affected my father. Additionally, having graduated from the unofficial school of family caregiving, I figured someone just might benefit from the good – and the not-so-good – ways in which I managed my father’s illness.
Now thirteen years after my father’s initial Alzheimer’s diagnosis, my novel will hit the virtual and brick & mortar shelves of bookstores. It will also make its way in person to a number of senior centers and senior living communities in my area. As an event on their activity calendars, I will read passages from my novel that might just ring a bell in the minds and hearts of those gathered to listen to what this Baby Boomer has to say. Maybe what I share will inspire them to purchase REQUIEM which I will gladly sell to them at a highly-discounted price. And once they’ve read my novel, perhaps they will share it with someone else, and so on down the line.
Is REQUIEM about Irene Frances Olson and her father, Don Patrick Desonier? Read the rest of this entry »
Here’s another article from the past that draws lots of attention. Bringing it into the present today.
First of all – take a deep breath and shed the mantle of guilt you’re wearing. Now let’s address your dilemma.
When your father was on his deathbed you made a promise to take care of your mother in her old age. Now she is at the point of not being able to care for herself and you realize that you’re absolutely not cut out for – nor are you capable of – taking her under your roof to provide the care that she needs. What’s a dutiful son or daughter to do?
I’m not advocating that you break your promise to your father but I am suggesting that you consider redefining what that promise looks like. You promised your father that you would take care of your mother and that’s exactly what you’re going to do. Taking care of your mother is not solely defined as moving her into your home and taking care of all her basic needs until she dies. Very few people have the ability or the means to provide 24-hour care in their home. You made that promise with the best intentions and you can still honor your promise without dishonoring your father. Keep in mind that loving your mother doesn’t guarantee your success as her caregiver. Even adult children with a fabulous relationship with their parent struggle greatly in their efforts. And if your relationship with your mother is tenuous at best, try picturing the scenario of you as caregiver and her as recipient of that care. What effect will that have on her, you, and the remainder of your household?
Let’s clarify how best to care for your mother.
Why can’t caring for your mother mean that you’re honest enough to admit that you’re not the best caregiving option? Do your best to find the care alternative that will provide her an optimal quality of life, e.g. adult daycare, errand and housekeeping services, assisted living. Do the research and consult the experts to confidently fulfill your promise to your father by securing the best care solution for your mother. If that solution involves selecting an assisted living facility, there are many resources available to you that can make this move a successful one for everyone involved. As her son or daughter you will be able to lovingly help her transition into a residential location with like-minded older adults where she can receive the care that will fulfill the promise you made to your father.
Now imagine the NEW normal that your mother and your family can experience.
Your mother lives nearby in an assisted living residence. She has companions with whom she enjoys spending time. She receives three wholesome meals a day and when she, or you, feel like seeing each other, you’re just a short drive away! The time she spends at your house will be as a pampered visitor – not an inpatient (or impatient) relative. It’s probably difficult right now for you to see this as a viable option, but I think in time, you’ll find that everyone, including your father, will be pleased with the outcome.
I covet your input. What success, or challenges in achieving success, can you share with us? I look forward to hearing from you.
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.
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…
- Bring her a low-maintenance houseplant
- Take in his mail
- Do yard upkeep, whether raking leaves, mowing the lawn, shoveling snow
- When you’re heading out to buy groceries, ask him if you can pick some things up for him
- Take her kids or grandkids to the park or to a movie
- Stop by with a board game or a movie to watch – a perfect way to get his mind off things
- Visit her with a pet that has a sweet disposition
- Take his dog on a walk – maybe on a daily or weekly basis
- Do some light housework or repairs: dishes, vacuuming, dusting, ironing, smoke alarm battery and light bulb changing, fixing a leaky faucet
- Return her library books
- Volunteer to stay at home to wait for the cable technician, repairman, etc. while he attends to other more pressing needs
- Bring him a week’s worth of meals in freezable containers
- Send her a greeting card on an ongoing basis. Who doesn’t love to receive real postal mail?
- When visiting, let the person vent, without passing verbal judgment on what they may say
- Do an item or two on her To-Do list – I promise you, her list is extraordinarily long
- Offer to make a photo album with him, using photos that mean a lot to him and the rest of the family
- Give him a gift card to a restaurant he may enjoy, or better yet, take him out to dinner
- Help him decorate for the holidays
- Drop off or pick up a prescription
- Keep in touch with her, even after her loved one passes. Too often, the grieving one has more attention than she can handle immediately after someone dies, then when she could really use some TLC, no one can be found.
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.
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 »
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 »
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 »
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 »
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:
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Are you preparing right now to never lose your boogie, no matter your age? I am. The attached article is a delightful story of how music affects the elderly – whether cognitively impaired or not.
The Alive Inside program proved how beneficial music therapy is to those whose world has diminished and whose communication and connection with others has been cut off. Regardless of the music’s era, regardless of the generation listening to it, everyone can harken back to long-ago memories just by listening to familiar tunes that meant something to us then, and that mean something to us now.
Retaining ones essence and ones individuality goes far towards announcing to the world, “I’m still here; I’ve still got it; I’m still vital.” As expressed in the article I’ve shared from a fellow blogger, I hope I will indeed be the smiling lady that gets up and dances, and I hope you’ll join me on the dance floor.
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.