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
How often have you felt defeated because your day-to-day existence is somewhat routine and boring?
The life of a family caregiver, attending to a loved one with a disease or malady that is all-encompassing, is never Same-O Same-O. Any semblance of status quo flies out the window shortly after taking on this learn-as-you-go caregiver role. The boring life about which the family caregiver used to complain no longer exists as she or he memorializes that long-abandoned way of living. My memorial to status quo existed while attending to my father during his Alzheimer’s journey.
Requiem for the Status Quo speaks of that memorial to things that once were.
In a recent interview with Oprah Winfrey, New York Times columnist and author, David Brooks, eloquently responded to Oprah’s statement where she said, “I hear that authors write the books they need to read.” Mr. Brooks’ response:
We writers are beggars who tell other beggars where we found bread.
He further explained that statement by saying:
We found it here, we want to share it with you.
That is what the more than 200 AlzAuthors have in common. Each author may describe their quest or mission somewhat differently, but no doubt many of them would agree that the impetus to write about their personal experiences was a call to action they could not ignore.
As a member of the AlzAuthors community, I personally feel that the more mainstream the conversation surrounding the Alzheimer’s and dementia experience becomes, the more the AlzAuthors’ vision will be realized:
Our vision is to lift the silence and stigma of Alzheimer’s and other dementias.
May you find sustenance within the AlzAuthors community.
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.
Requiem for the status quo was picked up by a publisher two years ago this month. The eBook and audiobook will continue to be available on Amazon through Black Rose Writing until the end of 2019. I am arranging for different publishing options for the paperback version, however, and will be releasing that paperback later this year.
In the meantime, my publisher and I reduced the paperback price for the month of February so those who want to add this book to their library can do so at a discounted price. If you are a Prime member, shipping is FREE! When I self-publish my novel I’ll be sure to send out an announcement so you’ll again have access to the paperback version through Amazon. And of course, the eBook is still available on Amazon and will continue to be available forever and a day. (I will self-pub the eBook at the end of the year.)
Let these recent reviews encourage you to get your copy today!
Jill W. I’ve never written a review when I’m only halfway through a book, but I wanted the author to know sooner rather than later, how much her book has affected me emotionally. My family has been dealt the dreaded card of dementia so reading REQUIEM FOR THE STATUS QUO has been difficult since we’re living Coleen and Patrick’s nightmare now. I find myself only able to read pieces at a time because the author has done a superb job of making Patrick and his family’s battle with this horrible disease, so real. Last night as I read, I found myself laughing and then crying. This book is a must read for anyone touched by Alzheimer’s or dementia.
Ann C. Irene Frances Olson writes believable fiction. Her characters are kind, funny and endearing — even in their flaws. When Colleen takes over her father Patrick’s caregiving because of his advancing memory issues, the reader can’t help but be moved by the tender relationship between them. The effervescent Colleen finds herself in a challenging life situation — pulled between her father’s condition, her working life, her brother’s disdain for her father’s illness and her own desire for companionship. Having experienced the devastation that Alzheimer’s can bring to a family, it was both heartbreaking and a joy to follow Colleen’s path. Yes, there was loss, but the author helps us see the beauty and courage in facing the inevitable challenges of aging and how it’s possible to do it with grace and love.
Jason This book is about the many faces of Alzheimer’s, from those how bear the thief in their brain to those who must cope with and care for loved ones. The story is straightforward and written with love, it is a daughter’s anthem of love for her father while also being a support for others facing the journey of incremental loss. Colleen describes it best when she identifies Alzheimer’s as a thief robbing us of our memories and our future. If you or a loved one are walking this journey, this story is sure to give both a sense of how to make this journey possible and how to mourn with others on the path.
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 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.
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.
Regardless of the industry you represent your goal must always be to deliver the best customer experience.
I have read and viewed many advertisements in which a company assures a future customer that their goal is to deliver the best customer service to each and every customer they serve. This is a very commendable goal in my eyes – a goal that must be reached by every provider of products and/or services. Whether I am a passenger on a multi-level cruise ship or a seaport’s rickety party boat;
whether I dine at a casual eatery or a popular Michelin 3-star restaurant; whether I am a guest at a Residence Inn or a resident at a senior citizen housing community, you must provide me with the best customer experience you can muster.
A couple months ago, I commented on a LinkedIn article that discussed one particular goal that should be considered by long-term care (LTC) providers, e.g., senior housing, assisted living, and memory care owners and operators. The particular goal stated in that article was to fill the buildings, attain high census, or as some industry leaders describe as putting “heads in the beds.”
My comment to this article centered on my work as a long-term care ombudsman (advocate for residents living in long-term care facilities). I explained that when a new General Manager was hired for any of the facilities to which I was assigned, I made a point of meeting her or him to explain my role as a resident advocate and to get to know a bit about this new person who was now in charge of 50 to 100 or more residents.
I asked one particular newbie what he felt was the greatest challenge as the new General Manager for this particular independent/assisted living community. “Fill up the apartments.” I suggested that a more appropriate goal might be to retain the residents he already has. I explained that retaining residents most likely means that he and his staff are doing the right thing in delivering the best care and customer service experience to each of his residents.
- Retaining the residents he already has equates to fewer additional apartments to fill;
- Retaining the residents he already has means satisfied residents who say great things about the building thereby attracting additional friends/acquaintances as future residents;
- Family members of happy residents in LTC means happy adult children who will also spread the good news to others;
- It stands to reason, therefore, that satisfied current residents are the best tool a manager can maintain in his marketing tool chest.
I have retired from working in long-term care housing and from my advocacy work as a certified LTC ombudsman. I know first hand the pressure that employees experience each and every month to report the right numbers to the corporate office. The suits want the bottom line, baby, and if you can’t deliver the numbers they want and need, you’re outta there! (Just like all the losing pitchers the Seattle Mariners have gone through in the past ten years or so.)
I’m not saying that the Suits are only concerned about profit, but I will say that perhaps their focus needs to center more on the delivery of exceptional care for those who are entrusting the Suits with the lives of mom, dad, spouse/significant other, or sibling. Those family members want to be able to sleep at night knowing that their loved one is receiving the best care possible, the most nutritious meals known to man, and that their loved one is living in a safe environment staffed by employees who care.
All you have to to is deliver the best customer experience. Do that and the bottom line will take care of itself.
I’m attaching the above article from a fellow blogger. He, like so many of us, find it difficult to fathom how anyone would take advantage of a vulnerable human being. The very unsettling fact, however, is that incidents of abuse of the elderly occur and are far too common.
Whether the abuse is instigated by family members upon the elderly in the privacy of their home, or by “professionals” in long-term care settings such as assisted living facilities, nursing homes, or group homes – it happens. Oftentimes such incidents go unchecked for months, or years, and are discovered only when a death occurs, or when someone with a conscience steps forward and complains to the authorities. Those being abused either don’t have the ability to complain or they fear that doing so will make matters even worse for them.
Worse? Residents fear that if they complain, they’ll be thrown out of the place in which they live – the place in which they receive the abuse. I know that you and I are quick to say, “Fantastic! What a great relief that would be if the person no longer lived with his or her abusers!” We say that because we have not experienced what they have experienced; we have not heard the threats and vicious statements directed towards these vulnerable human beings. These violated human beings don’t understand that abhorrent behavior is not normal because it’s all they’ve known.
These are older human beings who at one time were innocent children showing up on their first day of school; worried teenagers fretting over what to wear to the prom; young adults heading off to college and/or a career; husbands and wives, moms and dads … people just like you and me. Now they’re nothing but broken, barely alive bodies who have been treated worse than a junk yard dog.
That makes me mad.
The last Father’s Day that I spent with my dad, Don Patrick Desonier, occurred on June 17th, 2007. That year had been a definitive year in my father’s decline from Alzheimer’s so I didn’t need to be prescient to know that his time to escape the disease was drawing nigh. (Additionally, it didn’t help that his inoperable prostate cancer had decided to grace his body – like it needed something else to assault it.) I would normally not leave my husband to his own devices on Father’s Day – he’s a terrific dad and deserves to be spoiled – but I knew his adult daughters would give him his due so I left our Redmond, Washington home and flew down to Medford, Oregon for this mid-June celebration with my dad.
We enjoyed a subdued Father’s Day breakfast in the memory care unit’s dining room. My father didn’t eat all that much but he seemed to enjoy the ritual of sitting with his fellow memory-impaired friends as smiles and congratulations circled the table.
Those of you who are familiar with a memory care unit of an assisted living facility are also acquainted with the dearth of engaging activities therein, especially when your loved one can no longer participate in a meaningful way. Because of that dilemma, I always took my father “off campus” to take a walk at a nearby park. Mind you – his ability to ambulate was hindered, but we usually managed to walk the full perimeter, as we did that day. June in Medford, Oregon is H-O-T, but like many older people whose inner thermometer doesn’t seem to be working at full power – my father was dressed in a long-sleeved heavy cotton shirt buttoned right up to the neck, and an old standby wool cardigan – one of his faves.
Part way through our walk, I somehow convinced dad to at least take off his sweater, and to enjoy some hydration from the bottled water I always carried with me. Shortly thereafter, two 20-something year old men on bicycles approached on the path in our direction; they slowed down and before they passed us one of them uttered, “Happy Father’s Day, Sir!” Dad wasn’t quite aware of what they said but I reiterated their greeting, “Dad, they said Happy Father’s Day to you – isn’t that nice?” “Yes, Irene, it really was.”
Fast forward to June 16th, 2013; this adult daughter still remembers, and cherishes, the random act of kindness by those young men. It made my day in June 2007, and it’s made my day ever since. I’ve never forgotten your greeting, given to an old man who had certainly experienced many Father’s Day events in his 89 years. Thank you – bike riders at Hawthorne Park, on Main Street, Medford, Oregon. I hope you will always be on the receiving end of timely acts of kindness.
You are my heroes because you are ordinary people who did the ordinary right thing on June 17, 2007, making my dad’s last Father’s Day an extraordinary time.
Don Patrick Desonier:
March 12, 1918 – October 13, 2007
Were you eating breakfast in bed at the time?
Or perhaps while sitting in the easy chair next to your bed, you tried your very best to ignore the urge to purge … but you couldn’t wait any longer for someone to assist you so you let it all out, leaving you in a shameful way, sitting in a mushy pile of excrement while a stream of urine puddled at the base of your chair.
Welcome to the life of a vulnerable adult living in a nursing home. From coast to coast across the United States skilled nursing facilities (SNF) are filled with adults needing the greatest amount of assistance with their activities of daily living (ADLs) – toileting is one of those ADLs.
The following true scenarios occurred recently at a nursing home in a Seattle suburb, and at a similar facility in a suburb of San Francisco.
A man who is fully reliant on mobility assistance pushed the call button near his bed to register a need for assistance. In this case, he needed to go “Number 1” and “Number 2” and had the audacity to require assistance while the staff was busy attending to other residents’ needs – but not his needs. When a staff person finally entered his room an hour later, she did so to simply indicate that she didn’t have time to take him to the bathroom so he should just go in his pants.
A woman equally as vulnerable needed the assistance of a staff person upon waking in the morning and – knowing that breakfasts were brought around to the rooms at 7 a.m. – the 91 year old started to press her call button at 6 a.m. hoping to have her morning pee prior to the arrival of her breakfast tray an hour later. That “luxury” was one that would not be afforded her; instead, a caregiver brought a breakfast tray to this patient in the seven o’clock hour and when the patient asked if she could receive help to the toilet prior to eating her breakfast, the employee told her to just go in her pants because no one had time to help her at that moment.
I can’t help myself – here’s another incident: A staff person helps a woman to the toilet first thing in the morning. The woman who is clothed in a lightweight nightgown finishes using the toilet and is ready to receive assistance back to her bed – but lo’ and behold, the staff person forgot to place the call button within close reach of the patient so she is not able to alert someone of her desire to go back to bed. Enough time has passed that by this time the patient is shivering and screams for help – screams that went unnoticed for a quarter hour. In desperation this elderly woman somehow managed to lean far enough forward to push over a metal trash pail which she then kicked repeatedly until someone finally arrived to see what all the commotion was about.
These stories don’t paint a very pretty picture do they? They depict a low quality of life that no one deserves.
What does Quality of Life mean to you?
- Eating at fine dining establishments?
- Having a clothing wardrobe that rivals the catwalks of Paris?
- Driving in a luxury vehicle that provides amenities previously only found in limousines?
For most of us, quality of life boils down to leading a dignified existence in which we are allowed to take advantage of the basic necessities of life. For me, those necessities should include a safe living environment, sustenance, the inclusion of loving family and friends in my life, the freedom to make choices about matters that are important to me, and being on the receiving end of respectful behavior from those with whom I come in contact.
The most vulnerable among us should expect no less than those basic necessities, but “the system” isn’t working to guarantee those basics. Try to imagine, if you will, your own grandparent, parent, spouse, partner, or other family member in any one of the above scenarios. How comfortable are you with that type of day-to-day existence for them? You’re not comfortable at all – as a matter of fact you’re feeling a bit uneasy about this whole subject matter. I’m sorry to place doubt in your mind about the care your loved one is receiving but I’ll just bet that you need to get out of the comfort of denial you’ve been enjoying and into the eye-opening role of resident advocate.
Lack of caring = lack of care. Nursing home management is a tough job to do correctly, but I know it’s possible because there are some reputable and well-run facilities out there – not perfect by any means, but fairly acceptable. So yes, some nursing facilities employ stellar care staff but there are also those employees who just don’t give a damn. “I go to work. I go home after work. I get paid. What more do you want from me?” Caring – that’s what we want. You’ve chosen to work in this particular type of environment so don’t act like you didn’t know what you were getting into. Withholding proper care for those who have no recourse but to depend upon you is not only unfair, but it’s illegal. And how about answering these questions about your own aging prospects: Do you think you’ll somehow skip the journey into old age? Do you not realize that you too will be as old as the patients whose care is entrusted to you? What type of care will you hope to receive? Does it resemble any of the scenarios I’ve illustrated above – or are you under the impression that you’ll be at a “Champagne and Chandelier” type of place where you’ll be waited on hand and foot?
Not gonna happen.
This article just scratches the surface of the sub-standard care that can be found in nursing facilities. I only mention the toileting issue because it’s been front and center in my experiences with some of my acquaintances lately. One place to start getting some positive traction where these matters are concerned is the National Long-Term Care Ombudsman Resource Center where you’ll find links to advocacy programs in your state. Call those local representatives and report any concerns you may have about how your loved one is being cared for, or not cared for, in their nursing facility, assisted living facility, or group home.
If you act on behalf of your loved one, you’re also acting on behalf of everyone else in the facility because trust me – your mom isn’t the only one being neglected on her nursing home floor.
This article, written by a fellow blogger, is beautifully descriptive and paints a clear picture – not just of the visual scene – but also of the emotions that exist in those who step into the world of their loved one with Alzheimer’s and other dementia.
The two poignant themes that resonate with me are: the development of resident boyfriend/girlfriend relationships within a memory care community; and the wonderful interaction between a great-grandson and his great-grandpa with cognitive difficulties.
I honor this blog author and her family for choosing to integrate a youngster into what could be a scary or challenging environment for a child. One of my articles, “Alzheimer’s Heartache: young family members adjusting to a grandparent or parent with dementia,” addresses the difficulties that families oftentimes experience in long-term care (LTC) settings. I can see that this family already figured out how to soften the hard edges to make the visiting experience beneficial to all.
In yesterday’s post, a Seattle Police Detective defined elder abuse as:
- sexual abuse
- physical abuse
- financial exploitation
In Part 6 of Seniors for Sale: Placement perils and successes, Michael Berens, Seattle Times reporter, delves into the senior housing placement industry, focusing on one placement company that placed a client in a Tacoma-area Adult Family Home (AFH) with a history of safety and health violations – elder abuse – even a fatal event, but because the placement company had not done its research, it was not aware of the home’s previous infractions and kept placing unknowing vulnerable adults in the home’s care.
Many of these placement service companies operate state-wide and/or nation-wide, and believe that there is no way that they can help as many people as they do if they are required to visit each and every home/assisted living option available to the public that they are trying to assist. These companies are oftentimes characterized as Bed Brokers – an industry that is growing exponentially without much scrutiny or State controls.
CAVEAT: Just as in every assisted living situation – there are good senior housing options and there are bad senior housing options – so too there exist reputable senior placement companies, and not-so-reputable placement companies.
I personally think that these companies can be helpful to those looking for a senior housing option that suits their, or their loved one’s, needs. I caution those using these agencies, however, to understand that not every option out there is listed with placement companies. If a senior housing company does not choose to be listed with a placement service company, that option will not be offered, even if that particular housing option might be the very best choice for some families: cost-wise, location-wise, and even service-wise.
In a news update, Michael Berens’ article, State gets tough on referrals for elder care, we see that attention is now being directed at these placement referral companies in the hopes that those they serve – vulnerable adults in need of some sort of daily care – are protected from those companies who are simply aiming to make a profit at the most vulnerable time in an elder’s life.
As I mentioned in previous articles found in my blog category, Senior Housing, there are numerous resources available for those looking for senior housing for themselves or a family member. Please go to that category and type in a search term in the space located on the right-hand side of the page to find the topic that interests you most.
Part 5, of Seniors for Sale: Hiding Harm: the human toll, is one example of the lack of reporting that goes on in some assisted living residential settings – in this case – an Adult Family Home (AFH).
When you watch the video link above, you’ll be shocked at how a particular accident happened – and its after effects on the victim – and you’ll be horrified at how long it took before it was reported to the police.
Perhaps this statistic will provide a partial explanation:
only 16% of all incidents of elder abuse are reported.
Not only are many caregivers not reporting incidents of abuse that occur; surprisingly, family members fail to get beyond the denial stage when they discover that their loved one just might be in danger in the very location entrusted to his/her care. They can’t believe that the caregiving solution they found for their loved one has turned out to be disastrous in every way.
The police investigator for this case states the following:
We don’t tolerate domestic violence, but that’s not always the case with elder abuse.
The final episode of Seniors for Sale will be submitted tomorrow, Saturday.
My local newspaper ran an investigative report about the Adult Family Home (AFH) industry in Washington State. Depending upon where you live, a similar assisted living home may be called a Group Home.
In Washington State, no more than 6 residents can live in an Adult Family Home. These “businesses” popped up all over Washington State over the past several years as entrepreneurs realized how much money they could make taking in residents and charging thousands for rent and resident care. At this writing, there are close to 2,900 AFHs in the state. Since 2010, 446 of those were cited for violations of health or safety standards. Caveat: there are many Adult Family Homes that are doing an extraordinary job, but it’s the bad ones that make the Headlines and that’s the way it should be.
June is Elder Abuse Awareness Month. I thought it appropriate to provide Michael Berens’ series, “Seniors for Sale” in six parts this week, but I provide it with a warning that this Pulitzer Prize winning expose can be very difficult to read, and watch. Nevertheless, awareness is key, so I hope all will benefit from his extensive work on this piece. Whether you live in the United States, Singapore, the United Kingdom, or elsewhere globally, abuse occurs world-wide and it’s the vulnerable adults in this world who are its targets.
Seniors for Sale – I provide this link to Part 1 of the series – “Ann.”
Moving Mom and Dad – Leaving Home is an article from the June/July 2012 AARP Magazine. Statistics on aging are astounding, and scary. “By 2020 some 6.6 million Americans will be age 85 or older.” That’s an increase of 4.3 million from the year 2000. Time to celebrate – right? We’re living longer – and in some cases – thriving in our older age. The reality of the situation, however, is that eventually we’ll need some sort of assistance with our activities of daily living (ADLs) that might require a move to a care facility of some sort.
The stories presented in the attached article describe family instances where emergent circumstances warranted an emergent decision to move a parent into some sort of care facility. The best case scenario, as this AARP article suggests is that you, “dig the well before you’re thirsty.” Nice sentiment – but not always possible.
I have written numerous articles for my blog that address the difficulties the caregiver, and the one needing care, go through when making the decision to choose a long-term care (LTC) facility for a loved one. Below are links to each of those articles. I hope they prove beneficial to you.
More often than not, a senior citizen moving into a long-term care (LTC) facility is doing so under duress. “My kids said they’re not comfortable with me living on my own anymore. Well I’m not comfortable living in this old folks home!”
Sound familiar? It should. I am a LTC Ombudsman in Washington State and I can’t tell you how often I hear residents who provide nothing but negative comments about their living conditions. Regardless of how good the building; regardless of how fabulous the food; regardless of all the fun activities in which the residents participate, they are still not happy because the overriding dissatisfaction of not being in control of where they want to live colors all that they do.
And I agree with them.
Losing control and losing independence – a natural outcome of getting older? Gosh, I hope not. For the most part, a person moving into a long-term care facility has been in charge of their life – managing finances, choosing when and where they want to drive in their vehicle, eating whatever they want, whenever they want – in short, doing whatever they damn well please! Suddenly someone else, regardless of how well-meaning, takes those freedoms away and those choices because they’re not comfortable leaving mom and/or dad alone in their own house.
In my article: “Adjustment disorder: a long-term care facility side-effect,” I talk about the difficulties that befall the elderly as they endeavor to acclimate to senior living. Think about it! Going from a schedule-free life to a regimented one is difficult – whether you’re a young adult going into the military, or a senior citizen moving into an institutional living situation. Both generations suffer greatly during this adjustment period but the adjustment takes longer when you’re in your late 70’s and upward. And don’t forget, if the senior citizen wasn’t the one making the decision – choosing to move out of her home and into a senior housing community – the adjustment period will take longer still.
How can the adjustment period be made easier?
As advocates for residents in long-term care living situations, LTC Ombudsmen emphasize and promote a resident’s right to make choices about pretty much everything that goes on in their new “home.” What a novel idea! Some of the choices that we know are important to residents are:
- Choosing the clothes they want to wear.
- Choosing what time they want to go to a meal. Even if the resident wants breakfast after posted dining room breakfast hours, the culinary staff must make reasonable accommodation and provide some sort of breakfast item for that resident.
- Choosing which activities – if any – in which the resident wants to participate. No one should be forced to go somewhere against their will – that’s called coercion. “Come on sweetie, you’ll like it once you get there.” No!
- If the resident is on some sort of care plan in the facility, the resident has the right to refuse care, even if it might be to that resident’s detriment. When she was living in her own home, she had that right – nothing’s changed – only her environment.
- The resident can even choose to move out of the long-term care facility if she chooses. Don’t forget, it wasn’t her decision to move there anyway. Long-term care housing isn’t a prison – she can leave if she wants to, even if doing so goes against the wishes of the family, and against the advice of her physician.
The bottom line is that residents in long-term care facilities aren’t children who need someone else to make decisions for them. Granted – some residents with major cognitive decline may rely on others, such as a Power of Attorney (POA), to make decisions for them – but even then, that POA should be making decisions that the resident would have made if he/she were still capable of doing so.
Put yourself in your parent’s or grandparent’s shoes. How would you feel if your opinions, wishes, and rights were dismissed? Feels lousy, doesn’t it?
It’s so unfortunate that Alzheimer’s, and other dementia, have become the new condition to avoid and/or not acknowledge. A dementia diagnosis is SO difficult for everyone – including the one with the disease. I think this article is very well done and provides a perspective of which many need to be aware. Dismissing, or using euphemisms for this disease e.g., my wife has some memory problems – won’t make it go away. Helping others to understand – not necessarily accept – this diagnosis is a very worthwhile endeavor.
Think of a moving/relocating experience you’ve had with all of its inherent tasks of purging of items, packing what remains, and leaving all that is familiar as you move into uncharted territory. In your new neighborhood you’re starting all over again to find: new friends; a new supermarket with the best deals; perhaps the best school(s) for your children; a new church; and new ties to the community. Not exactly an enjoyable experience. It took you some time to adjust to your new community and feel that you fit in, didn’t it?
Now imagine doing the same thing as someone who is at least 70 years old with failing health, no family nearby, and perhaps with a compromised cognition level. Vulnerable adults move into a long-term care (LTC) housing environment because of a condition, or combination of conditions, that make living independently no longer an option. Because of this disruptive move, another disorder – adjustment disorder – makes their move a perilous one.
A loss of context in a new environment. In my work as an advocate for vulnerable adults, I had the privilege of hearing a wonderful speaker, George Dicks. At the time, Mr. Dicks supervised the Geriatric Psychiatry Service clinic at Harborview Medical Center in Seattle, WA. He was also a contracted instructor for the University of Washington, teaching courses on Gerontology, Psychiatric Consultation, and Mental Health. He emphasized that residents living in nursing homes and assisted living facilities struggle to look for context within their new environment. For example, context is hard to come by when your daily bath occurs at 2:00 in the afternoon instead of in the morning or evening as was the case prior to the move. And forget about finding comfort in routine because the demands on LTC staff are such that caring for numerous residents on their shift can’t possibly assure a routine on which the residents can rely.
Just providing care doesn’t mean that a staff person is caring. Everyone who moves into a long-term care facility will have difficulties, but those who are cognitively impaired face an especially arduous adjustment. As I previously mentioned, staff are hard pressed to provide individual care to their residents, and oftentimes are poorly prepared to handle the disorders that walk through the door. Just getting through their daily shift is troublesome so trying to learn the habits and routines that are so vital for quality of life of the resident with dementia is a very time-consuming task.
Quite frequently, the only contact a staff person has with a resident is when they are making demands of that resident: “time to take your medicines Mrs. Jones;” “let’s get that soiled clothing changed Mr. Smith;” “open your mouth Mrs. Clark so I can feed you.” Providing for basic needs is not providing care. Why? Because the staff are requiring something of the resident. There is no connection. When a staff person interacts with a resident, absent a provision of care, that’s a better definition of care.
How to lessen the effects of adjustment disorder. Those living in a long-term care housing situation oftentimes feel as though they left all their power, and all of their basic human rights, at the door. They are constantly surrounded with reminders of their condition – all those other residents who look as lost and helpless as they do – and it seems that the only time anyone pays attention to them is when someone is demanding something of them in the form of providing some sort of assistance with their care needs. If every staff person spent just five minutes of non-task-oriented time with each resident during their shift, those residents just might start feeling better about themselves.
- Walk with a resident for a few minutes by simply accompanying them in the hallway and reassuring them along the way.
- Play music the residents like in the common areas and in their rooms – and don’t assume that you know what they like to hear. Take the time to find out what gets their feet tapping.
- When you walk past a resident, greet them, smile at them, just as you would if you were in a social environment instead of a clinical environment. Again, do so even when you’re not providing a care service. Your friendly, heart-felt greeting may just make their day.
- Start a dialogue with residents that allows them to open up to you about who they are; what their lives were like prior to arriving at the facility. If you need to jot down some of their stories so you’ll remember them later, do so and continue the dialogue the next time you see them. Wouldn’t it be a pleasant surprise to a resident when you asked them, “Tell me more about your grandson Charlie. He seems like a real character!” Wow – you were actually listening, and it shows. Now you’re connecting with the resident.
If you are a staff person in a long-term care facility, can you put your grandma or grandpa’s face on your patients/residents faces thereby having a greater incentive to connect with those receiving your care? Or if that doesn’t work for you, do what you must in order to add an element of care to those you serve. Just because you’re helping the resident perform a task, doesn’t mean that you’re providing the care that they really need.
insurance, n. A thing providing protection against a possible eventuality. Concise Oxford English Dictionary, 11th Edition; 2004.
Auto insurance, home or renters insurance, and health insurance – we understand these policies and know that more likely than not the need for the aforementioned insurance policies will rear its ugly head in the near or distant future so we pay the premium for said policies, hoping we won’t need it, but sleeping better at night because we have it.
Why is purchasing long-term care insurance such a difficult step to take for me and my husband?
- Unquestionably, it’s expensive;
- Fearfully, companies who offer this product are going out of business left and right and may leave us holding an empty bag;
- Definitely, it’s a real difficult type of policy to understand; but
- Undeniably, the financial need for it can outweigh the cost of purchasing it.
My husband and I have still not made an effort to look into it further. Here are my two reasons based on family experience – both of which tend to contradict each other:
My father’s long-term care insurance policy. My father had a long-term care insurance policy for which he paid premiums for at least 20 years – no small amount of money to be sure. He was diagnosed with Alzheimer’s at the age of 84 and died five years later. His care needs at the retirement facility in which he had lived for 13 years didn’t meet the insurance reimbursement threshold until his final month of life. As with most policies, the insurance holder’s care needs must meet a defined level of care before the insurance company kicks in their assisted living care reimbursement payments. When that happens, the insurance holder no longer pays any more premiums. Twenty years of paying premiums for one month of reimbursement benefit.
My sister-in-law’s long-term care policy. My brother and sister-in-law purchased their long-term care insurance policies when they were in their late fifties. Less than a year later my sister-in-law was diagnosed with early-onset dementia and approximately two years later drew benefits from her policy. A couple of years of paying premiums for what will be years of reimbursement benefit. If that isn’t the good news/bad news of long-term care insurance I don’t know what is!
I have no excuse. I know the devastating costs of long-term care because in my past professional life I worked for a senior housing provider and they represented the Champagne & Chandelier variety of assisted living. But even the generic assisted living providers charge high rental rates and as ones’ care needs increase, so do the care fees. This isn’t avoidance behavior on my part and I’m not squeamish about the subject of health and ones’ eventual death. I’m just finding it hard to take this leap into signing up for insurance, even though it holds the assurance of fending off the potential of total personal financial collapse without it.
How are you Baby Boomers dealing with this subject? If you finally bit the bullet and purchased a policy – how did you finally take that leap of faith?
I AM NOT LOOKING TO BE BOMBARDED BY SELLERS OF INSURANCE AS A RESULT OF THIS BLOG ARTICLE SO PLEASE DON’T GO THERE. But I welcome other constructive feedback for those of us on the brink of making this difficult decision.
You’re patting yourself on the back, congratulating yourself for:
- finally deciding that it’s time to move into Senior Housing; and
- deciding which type of long-term care (LTC) option suits your needs.
Now what? You’re scared to death because of the abhorrent negative press you’ve read regarding certain types of Senior Housing. Good for you – you should be! There are ways to make your selection a more trustworthy one. What follows will hopefully weed out the bad eggs, but there is absolutely NO guarantee the decision you make is 100% sure.
WORD OF MOUTH
Chances are that those similar to you in age – your friends, work associates, neighbors – have looked into or are currently looking into Senior housing options and they can be a very worthwhile resource. Don’t be afraid to ask them to share their experiences with you and you’ll certainly do the same with others as their needs become known to you. Better yet – if you know of someone who already lives in a LTC facility, visit them to discern what they think about their own choice.
HOUSING SEARCH RESOURCES
- Check out your state’s Aging & Disability Services Administration department (linked here is Washington State’s ADSA.) You really can’t go wrong checking out your State’s services for the Senior population. These resources usually have links to long-term care facility research tools, such as the Assisted Living section of my local state’s ADSA. No doubt your State’s Aging & Disability department will have similar links. If you’re looking for retirement communities that involve totally independent living, or a Continuing Care Retirement Community (CCRC), an all-care type of residential model mentioned in my previous blog “Selecting a Senior Housing Community”, your search will be less informational because most States do not license retirement communities.
- STATE INSPECTION SURVEY. All licensed facilities in the United States are inspected/surveyed every 12 – 18 months. This survey is quite thorough and covers absolutely EVERY aspect of a facility’s operations. When you tour a facility, always ask to look at a copy of that building’s latest State Survey. By law they must make it available to anyone who asks. I don’t think I would ever consider a Senior housing option without reading the building’s State Survey. You’ll find minor or major citations which will be very telling as to how the building is run and how the Administration or Owner of the building responds to such citations.
LONG-TERM CARE OMBUDSMAN PROGRAM (LTCOP)
Every state must have a long-term care ombudsman program in place. These programs are mandated by the Federal Older Americans Act and are intended to improve the quality of life for people who live in long-term care facilities. A call to the LTCOP intake line in your state is a call worth making. Let’s say you’ve narrowed down your housing search to a few options. You ask the LTC Ombudsman’s office about the types of complaints that have been filed against those facilities and this office will provide worthwhile information to help you make your housing decisions. The National Long-Term Care Ombudsman Center will help you locate your local LTC Ombudsman program.
SENIOR HOUSING LOCATORS
You’ll notice that I’ve placed this type of resource at the bottom of my list. There are numerous housing “finders” out there and they can certainly be helpful. You tell them what you’re looking for; what area of town you prefer; what type of care you need; and what you’re willing to pay; and they’ll come up with some options for you. Please keep in mind, however, that these senior housing finders have an inventory of housing clients that may or may not be representative of all that is out there. They may come up with some very good options for you but their list will most likely not be an exhaustive one.
Regardless of what/who you use to locate a LTC facility, I hope you’ll go through the previous options I’ve listed above to discern the appropriateness of any facility you’re considering. Perhaps a Senior Housing Locator has provided what appear to be some great options for you and you’ve even toured them and feel comfortable with what is offered. Prior to making your final selection, at the very least go through your State’s Long Term Care Ombudsman to discern whether or not any recent actions or citations have been placed against that facility. And when touring any housing location, be certain to ask for the facility’s latest State Inspection Survey so you can see what the State thinks about that facility.
The most comfortable decisions you can make in life are well-informed ones. Whether you are choosing a vehicle, the vacation of a lifetime, or a potential residence, doing so is made easier when you’re armed with essential information. Oftentimes when inundated with too many choices, we exclaim that we would rather have fewer options from which to choose. “Give me two choices and I’ll be able to decide – six or more? Forgetaboutit!” There is one time, however, when you will welcome a diversity of options: selecting appropriate care in your Senior years.
Identifying the person in need of care.
This quest upon which you are embarking may be your own personal quest. You know staying in your current home might prove dangerous to you – and therefore inadvisable – in the years to come. Or perhaps you just want to retire from doing house repairs and weekend yard work –and who doesn’t? Whatever the reason, you’re considering your options for when you might be less able to take care of your daily needs.
Another scenario is that your spouse, parent or sibling is in need of some sort of long-term care resultant from a debilitating condition such as cognitive decline, mobility restrictions and/or advancing age, so you’re trying to discern how best to address the care needs associated with their condition.
There are two primary care options from which to choose:
- Aging in Place – This blog posting addresses the option of staying put and making adjustments that modify a residence to suit your needs or that of your loved one. Also included in this option is the potential for hiring in-home care. Both of these options allow a person to remain in their home for as long as possible.
- Long-term care (LTC) housing options. In a future posting I will address the available categories of long-term care (LTC) housing and will provide resources that should be helpful towards choosing a replacement for your current residential situation.
Both options have Pros and Cons involved with them. But only you know what best fits your personal situation.
Aging in Place: I don’t even want to think about moving!
Aging in Place refers to living where you have lived for many years using products, services and conveniences to enable you to remain where you are. To successfully age in place without moving you will most likely need to accommodate the physical and cognitive changes that may accompany aging.
Structural changes. Both the inside and outside of the home could eventually require some structural adjustments to accommodate a person’s current – and future – needs.
- If you live in a two-story house and your primary bedroom and bathroom are upstairs, does your bottom floor afford a bedroom/bathroom alternative?
- Are you financially prepared for the costs of making the inside of your home more accessible, e.g. wider doors for wheelchairs or walkers; lowered counters to accommodate same; showers that can accommodate someone confined to a mobility aid?
- Does the outside of your home allow for the addition of ramps and railings for easier access to the residence?
- If one of you has cognitive decline and is prone to wandering outside of the house – what measures, if any, will assure this resident’s safety?
- If you need care assistance during the day, are you comfortable having a health care provider in the home? The costs and logistics of hiring and scheduling staff to come into your home can prove to be overwhelming and oftentimes more expensive than if a person moved into a residential community that readily offers the needed care.
How expensive is in-home care these days? Caveat: I will not be addressing financing sources such as long-term care insurance, Medicare, Medicaid and the like. My intent in these articles is simply to provide an overview of care options and potential costs.
The U.S. Department of Health and Human Services gives a 2009 run-down on costs for care options both in the home and in a long-term care residential setting. I know that in Washington State, where I reside, the average Home Health Aide hourly rate is $22; the average monthly cost of an Assisted Living (AL) facility is $2870; and the average daily cost of a semi-private room in a nursing home is $225 which is approximately $6700/month.
Focusing on Home Health Aide/In-home care: based on the average hourly rate of $22, one could expect to pay close to $528 per day if based on an hourly rate. Keep in mind, however, that most staffing agencies offer a monthly rate which will be less than the hourly rate. But even with that “discounted” rate, in-home care can be very cost prohibitive. A great many of us may not have access to that amount of cash and if the need extends out to several years – now it’s really adding up.
So why even think of remaining in one’s own home if it’s so %#^%($ expensive?
All of the above is not to suggest that Aging in Place is not doable. Many people around the nation are successfully aging in place so why shouldn’t you have a crack at it? Consider this alternative: some people start out Aging in Place and then transition into a long-term care housing situation when finances, or circumstances, warrant such a move.
The articles, Avoiding the pitfalls of selecting senior housing, and Selecting a senior housing community – easy for some, not for the rest of us, provide some tips for your selection process.