Community outreach
Celebrating Community
I started this Blog over seven years ago. This is my 986th post. I recently told a blogging friend, Jill Weatherholt, that my blogging changed over the years, especially as it relates to steering clear of topics that divide, e.g., political, religious, and the like.
In my very first post on September 20, 2011, I stated that I wanted to bring some sort of encouragement and light into the lives of, not just Baby Boomers, but everyone. I wrote hundreds and hundreds of essays centered around caregiving and Alzheimer’s, reflecting on my personal experiences with my father, as well as my professional experiences working in long-term care (LTC). But I wrote on other topics as well…
Back in 2016 – a very contentious year in US politics – I made the decision to stop writing anything that would ruin someone’s day because as many bloggers will admit, having a forum to speak your mind is a heady and powerful responsibility – about which some of us have been irresponsible. Thus the reason why, on September 12, 2016, 5 years after I started this blog, I wrote this post, Good Starts With Me – Irene’s About Face.
I am a columnist for Grandparents Day Magazine, an online publication based out of Adelaide, Australia. I wrote a piece for their July 2018 issue in which I suggested we might all do well celebrating our similarities rather than allowing our differences to divide us.
Community is so very important, more important to me than ever before. I hope that along with me, you will acknowledge our differences, celebrate our right to be individuals, and look for the good that binds us, rather than the bad that tears us apart.
Grandma and Grandpa pods
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.
The Alzheimer’s Community
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.
Sorrow Passes and We Remain
I found a letter dated July 28, 1883, written by Henry James to his friend Grace Norton, in a reference book. He wrote a letter of encouragement to her as she was desolate, depressed, and determined not to live. I post portions of it here should anyone out there feel as Grace did, in need of life-saving encouragement.
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You are not isolated, verily, in such states of feeling as this – that is, in the sense that you appear to make all the misery of all mankind your own; only I have a terrible sense that you give all and receive nothing – that there is no reciprocity in your sympathy – that you have all the affliction of it and none of the returns.
I don’t know why we live, but I believe we can go on living for the reason that life is the most valuable thing we know anything about and it is therefore presumptively a great mistake to surrender it while there is any yet left in the cup.
Sorrow comes in great waves, but it rolls over us, and though it may almost smother us it leaves us on the spot and we know that if it (sorrow) is strong, we are stronger, inasmuch as it passes, and we remain.
My dear friend, you are passing through a darkness in which I myself in my ignorance see nothing but that you have been made wretchedly ill by it; but it is only a darkness, it is not an end, or the end.
Don’t think, don’t feel, any more than you can help, don’t conclude or decide – don’t do anything but wait. Everything will pass … and the tenderness of a few good people, and new opportunities, and ever so much of life, in a word, will remain.
You are marked out for success, and you must not fail. You have my tenderest affection and all my confidence.
Kindness Fridays
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.
Dynamite storybook for seniors with dementia
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.
My novel’s 1st anniversary
Requiem for the status quo‘s anniversary is the perfect opportunity to announce my involvement with a fabulous project focused on Alzheimer’s disease.
I am one of over 150 authors from around the world who will be represented at the Alzheimer’s Association – Western Carolina Chapter’s Dementia Education conference in Charlotte, N.C., this August. I, and over 25 other AlzAuthors, have donated copies of their books, which will be given away in a raffle to conference attendees.
I wanted to support this cause because during my caregiving experience in the early 2000s, I most definitely could have used more fiction about Alzheimer’s to normalize my day-to-day stresses, and some up-to-date non-fiction to help my learn-as-you-go caregiving experience. Something else from which I surely could have benefited is the non-profit, AlzAuthors. AlzAuthors.com is a nonprofit website that shares information on books and blogs about Alzheimer’s and dementia. I am proud to say that I, too, am a member of this fine organization. Had it been available prior to my father’s death from Alzheimer’s disease, I no doubt would have tapped into its resources.
AlzAuthors started in 2015, when Founders Jean Lee from Ohio, Vicki Tapia from Montana and Marianne Sciucco from New York, who had also written books about Alzheimer’s, met in cyberspace. They discussed the growing need for resources about dementia. A year later, after Shannon Wierbitzky joined the team, the group started a website and published posts from 60 authors. In 2017, Canadian Kathryn Harrison and Ann Campanella from North Carolina joined the administrative team.
Since that time AlzAuthors has published weekly posts, sharing resources about books and blogs that focus on Alzheimer’s and other dementias. The site has grown to include over 150 AlzAuthors from around the world and has a bookstore with a vast collection of top books for individuals, doctor’s offices, assisted living facilities and other eldercare services. AlzAuthors also has a thriving presence on Facebook, Twitter, Instagram, and Pinterest. AlzAuthors Jean Lee and Ann Campanella, whose memoirs were recently named to Book Authority’s Best Alzheimer’s Books of All Time List, will share “The Story Behind the Stories” of AlzAuthors at the Alzheimer’s Association conference.
“Together We Can,” the Dementia Education Conference held by the Alzheimer’s Association – Western Carolina Chapter, will take place on Wednesday, Aug. 29, from 8:00 a.m. to 4:00 p.m.at the Friendship Missionary Baptist Church, 3400 Beatties Ford Road in Charlotte, N.C. The event is geared for healthcare professionals, caregivers, people living with Alzheimer’s or related dementia and members of the general public. Attendees will learn more about research, caregiving practices and tools to assist in the journey with Alzheimer’s. For more information, visit ALZ.org/NorthCarolina or call 800-272-3900.
For more information about AlzAuthors. visit their website: https://alzauthors.com/.
Kindness Fridays
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.
Kindness Fridays
This week I focus on the kindness of a fellow Black Rose Writing author, R. Bruce Logan. Bruce and I have never met, but through both of our association with the same publisher we developed an online relationship in which I feel I’ve known him for some time. Good news? My husband and I will meet Bruce and his wife late June when they are in the Seattle area. What a delightful lunch date that will be.
Bruce kindly reviewed my novel Requiem for the status quo on his blog The Narrative Arc. That kindness inspired my own exchange of kindness by reviewing his novel Finding Lien and teasing you about its sequel, As the Lotus Blooms.
I am providing my Five Star Amazon review from a year ago, as well as my additional comments:
Finding Lien grabs you from the opening scene. Wow, I really enjoyed this novel. The author has a way of describing scenes so that the reader is transported right there. But it’s not just the scenes that are clear, it’s his description of the characters that comes through loud and clear, without robbing the reader of her or his own impressions of what a specific character might look like.
The action in this novel did not lag. I wanted to find out what happened next and was not satisfied to put the book down until such scenes had played out.
Bruce’s love of and familiarity with Vietnam and the surrounding areas give the reader confidence that what they’re seeing through his descriptions are right on the money. Delightful. Addendum: how could he possibly know so much about Vietnam’s geography and history? He is a retired Army officer who has been giving back to the country in which he served, Vietnam, for many, many years.
Having completed Bruce’s very well written Finding Lien, I jumped at the opportunity to be a beta reader for the sequel. As the Lotus Blooms, with a release date of September 20th, seamlessly carries on from where Lien left off. If I could have read it faster I would have, a paradoxical statement if there ever was one. While wanting to read what came next, I didn’t want the novel to end. I would have done my emotions a favor by reading it as slowly as possible but speed won out, which left me wondering, “Will there be a book three?” I don’t know the answer to that question so nothing you do to bribe me for the answer will benefit your own curiosity.
What I can say, however, is that you should mark your calendars for the sequel’s release September 20, 2018, and read Lien in the interim. You will not be disappointed.
Kindness Fridays
Long distance relationships don’t always work out but the relationship I have with an Adelaide, Australia online magazine works to perfection. I’ve never wanted to be the selfish one in this relationship, but I feel I’ve received far more from it than they have.
A wee bit of history: I’ve been writing for this magazine off and on for some time and then late last year, Grandparents Day Magazine offered me my own column; my own byline. Now I’m guaranteed a page in every publication.
Then, just a couple weeks ago, the editors/founders of the magazine reached out to me wanting to promote a writers’ group to which I belong: AlzAuthors. AlzAuthors is made up of a compendium of authors who share their personal experiences with Alzheimer’s disease and other dementias to benefit others. Their motto is: To make a difference. One can sing a lonely song, but we chose to form a choir and create harmony.
So today’s celebration of kindness is two-fold: one, Grandparents Day Magazine generously reached out to me and the author group to which I belong; and two, AlzAuthors members chose to share their difficult Alzheimer’s disease journeys so that others could benefit from their vast experience – much of it learn-as-you-go. As a member of the AlzAuthors group, I can testify to the fact that once I had been through a family caregiving experience – for me it was for my father – I hoped it wasn’t for naught. Being able to share my experience with others through my novel’s publication just seemed right. The same can be said for the more than 150 books written by the AlzAuthors members.
And that, my friends, is my Kindness Fridays for this week.
Kindness Fridays
Celebrating my 65th birthday today and celebrating the wonderful parents who raised me.
Mom and Dad were fair people who were very dedicated to their three children. They were supportive and immensely forgiving of Don, Mary, and me. The latter attribute included both not letting us get away with anything, while teaching us the importance of making life decisions that would make us better citizens of the world in which we inhabited.
Mom was the creative half of our parents, sewing all our clothes and actively involved in the musical community throughout her life. She was a master pianist and sang tenor equal to or better than most male tenors. She was also an activist, a trait I am happy to have inherited. Dad was the jokester of the two, but managed to balance that fun side with extraordinarily practical aspects of childrearing so we would become successful, contributing adults.
Mom and Dad were extremely kind – to family, friends, and strangers – and taught us to consider each and every person with whom we came in contact, as equal to ourselves, regardless of their station in life, their ethnicity, race, or religion. Us kids had a really good start in life because of their parenting, and now that we’re all three in our mid to very late 60s (that’s you, Don) I can proudly say we didn’t turn out all that bad.
Kindness Fridays
Over the years I’ve discovered that when we are part of a community of people, our quality of life increases. The support of others can’t be beat. For me, community is like-minded people with a common thread through their lives that provide meaning and purpose for one’s day to day existence.
I found community in a writer’s group called AlzAuthors, a compendium of authors who have all been affected by Alzheimer’s disease and other dementia. All of us authors share our experiences through our non-fiction and fiction works to bring knowledge, comfort, and understanding to those on a similar journey to the one we have already completed. Trust me, we all wish such a group were not necessary; that the common thread we share didn’t involve the always fatal disease of Alzheimer’s and related dementia; but it is necessary and we’re filling a need that as of this writing doesn’t show any chance of abating.
I’ve never met any of these authors – I live in Washington State and the rest of the authors represent just about every state in our nation – but because of our common journeys, we are members of a community. Are we all politically aligned identically to each other? Probably not. What about religious practices, do we follow the same spiritual practices as every member of the group? Hardly, but it doesn’t matter. What we have in common does matter: we are dedicated to encouraging and helping families and individuals whose lives have been interrupted by Alzheimer’s disease. Speaking for myself, I am so glad that my novel, Requiem for the status quo, can reflect the good and the bad decisions I made and other individuals made, so that those who are still on the Alzheimer’s journey might do better because they know better. I hope you’ll get to know us AlzAuthors through our website and that you’ll become an AlzAuthors Reader Community once you’ve browsed through our bookstore. Click here to go directly to the AlzAuthors Bookstore to find a library of books – more than 140 as of today – that link directly to Amazon or other purchase outlets.
So that’s it. This week I celebrate the kindness I have found in the AlzAuthors Community. Sure beats going it alone.
Kindness Fridays
The other day I was in the clothing department of a store I frequent, found the item I wanted to purchase, and made my way to the sales counter…with a 20% coupon in hand.
“Do you have any other coupons?” the salesperson asked.
“Why, no, just the one.”
“You can ask me.”
Not certain what I was supposed to do at that point I asked, “Do you have any coupons?”
Yep, she sure did, which she scanned bringing the price of the item even lower…almost to the point where I was wondering if they would owe me money, rather than the other way around.
The salesperson didn’t have to be generous and kind like that, but she was.
And that’s my Kindness Friday for this week. Don’t you just love it?
Kindness Fridays
This week’s kindness celebration focuses on a long-time family friend, Walt D.
Walt came into our lives when we lived in Los Angeles, California. He worked at the same company as my father who was a mentor to the young, up-and-coming new employee at Manufacturers’ Life Insurance Company. When my family moved from LA to Honolulu, Hawaii, Walt kept in touch with us, oftentimes flying through Honolulu on his way to Maui where he vacationed from time to time.
We hadn’t seen Walt in a while, so when my mother died in September of 1994, imagine my delighted surprise when I entered the church for my mother’s funeral service and there stood Walt near the altar, a friend who had flown to Honolulu from Toronto, Canada where he had relocated years prior to work in the head office of my father’s company.
At forty years of age, I ran up the aisle of the church and threw my arms around him, so thrilled to see our family friend and so blessed that he traveled all the way from eastern Canada to honor my mother and our family by his attendance at my mother’s service.
Fast-forward twenty-four years to Monday of this week when eighty-three-year old Walt D. called me from Toronto to congratulate me on my novel, Requiem for the status quo. He had just finished reading it and couldn’t wait to talk to me about my accomplishment. “Irene, there is no reason why your novel shouldn’t be on the New York Times Best Seller List!” I thanked him for his very generous review and we then talked about the book’s subject matter (Alzheimer’s disease and its effect on families) and how he, in his golden years, had witnessed dementia’s hold on many of his friends. Since Walt and I communicate by postal mail several times a year (he does not own or use a computer), I was well-aware of his involvement with the Alzheimer’s Society of Canada where he volunteers and participates in their equivalent of the annual Walk to End Alzheimer’s. Walt visited my father after my Dad’s Alzheimer’s diagnosis, even while my father was in the middle of his Alzheimer’s journey. Walt made a point of keeping in touch with Dad, knowing the window of opportunity would come to a close in time.
I spent nearly a half hour on the phone with Walt this past Monday, feeling so close to this man who had entered our lives way back in the early 1960s, and who had remained a part of our family for almost sixty years. Friendships don’t have to end because of distance and time; when you stoke the flames they can survive and be contributory to one’s quality of life, as Walt’s has been to mine.
Kindness doesn’t recognize the barriers of distance, time, and even age.
Kindness can live on if we make the effort to nourish it.
Kindness Fridays
The other day, I discovered something about myself and about the way of kindness.
It’s really easy to be kind when life is going grand.
Clarification. The kindness gene resides within me, just as it does in you if you feed it and let it flourish. I feel absolutely honest saying that my pattern of thinking reflects the best of kindness one can imagine. At the very least, my intentions are pure.
With that said, however, when I’m feeling less than 100% – say, 25% – I have to work hard at not letting others be on the receiving end of that less than whole person that I’ve become. I’ve had a lousy night of sleep while also fighting seriously inflamed sinuses? Ugh, I must rein in my struggles and not take it out on the receptionist at the doctor’s office, or the supermarket employee. I sincerely don’t want to be responsible for ruining someone else’s perfect, gloriously, healthy, well-slept day. (Gawd, I’m envious of those who have been given the gift of sleep.)
All it takes is one look, one word – or the omission of a word – to spew miserableness onto someone else.
Kindness is a way of life for me but sometimes it threatens to take a break from the norm and that’s when it’s needed the most in the world. You see, I’m not the only person who has less than stellar days. I’d be self-centered to think I’m the only person the world takes a dump on now and again. Everyone in this world is vulnerable – everyone – and far too many are on the brink of giving up. We are all in this together, in good times and in bad.
I vow to not contribute to the latter.
Long-term care: squeaky wheels and raging forest fires
Although now retired, over a twelve-year period I worked in long-term care (LTC) wearing three different hats:
- 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.
One grievous example. This is just one example of common issues that arise in LTC settings. The complaint process I mention later in this post provides a good starting point when issues arise.
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?
Kindness Fridays
2017 was a year of conflicting emotions for me. There were many good times. These two stood out: our grandson was born and my novel, Requiem for the status quo, was published. But there were also times I’d like to forget, and once my hip gets better after this past October’s bionic replacement, that will become one of the most forgettable events of the year.
Kindness, however, wins out and drowns out the not-so-pleasant occurrences that can cause stumbling blocks to our gentle psyche. So on this last Kindness Friday of 2017, I’m posting links to a few of my favorites in the hopes that while I’m encouraged by past Kindnesses, you can be as well.
June 30th, 2017: walk away from cruelty
April 14th, 2017: kindness trumps all
March 17th, 2017: courtesy on the road
March 10th, 2017: my husband’s perfect eyesight
January 6th, 2017: 1st Kindness Fridays – Mall kindness
Kindness Fridays
Nicole Brodeur, a writer for the Seattle Times newspaper, posted this article about a Costco employee who always went above and beyond his normal duties to make the customers’ days better than when they arrived at the store.
Fifty-six-year-old Tom Goessman contracted polio as a child and got around in a wheelchair. While working at the Seattle Costco store, he used a standing wheelchair while validating each customer’s receipt before they left the store. But that’s not all he did. He would make a game of guessing the amount spent just by looking at the goods in a customer’s cart; more often than not, he was right on the money. He would also draw pictures on the customer’s receipt if that customer was accompanied by a child, something fun for the kids to look forward to.
But all of a sudden, Tom was no longer at Costco’s Seattle location; customers were more than a little concerned. The Seattle Times has a column titled, Asked and Answered which provides an opportunity for people to contact the newspaper with queries that are on their mind. Turns out, many Seattle Costco customers took advantage of that column to discern the whereabouts of their beloved Tom. The person who became the highlight of their Costco warehouse shopping trips was nowhere to be found.
After some research, the newspaper discovered he had moved to Glendale, Arizona after being invited to visit that state by one of Costco’s customers, a man whose son is also paralyzed and who thrives in the dry, Arizona weather. You see, Tom gets life-threatening infections each year because of his polio; the damp, Seattle weather being an aggravating factor. Tom spent some time in Arizona two years in a row and was pleased to discover that his infections became a thing of the past. So what did he do? He relocated to Glendale, Arizona, and took on the same job he held in Seattle.
When columnist Nicole Brodeur wrote her original article about Tom a colleague of hers suggested, “If you want to restore your faith in humanity, read the readers’ comments.” Ms. Brodeur knew how much vitriol can be included in readers’ comments and so doubted her colleague’s assessment.
The comments under an online news story are a saloon I step into with one hand on my holster. One person makes a valid, thoughtful point, but then two stools down, someone pops off with a sexist or racist comment. Someone else weighs in on that and one scroll later, a full-on brawl has broken out, the subject of the story long forgotten.
That was not the case for those readers who responded to her article. The comments were filled with positive stories about their interactions with Tom during their Costco warehouse shopping expeditions; they missed him so much! The kindnesses that Tom extended to busy Costco shoppers elicited more kindness, revealed in the shoppers’ recollections of their brief times spent with him.
It’s been said that hate breeds hate but I’m convinced just the opposite is true. Kindness generating kindness is what I’ve experienced time and again in my life; even the smallest of kindnesses can douse the flames of hatred.
And in the world in which we’re currently living, don’t you think it’s about time hatred was put in its place, once and for all?
Kindness Fridays
Chivalry isn’t dead, nor is good ol’ everyday courteousness.
We had a full day this past Tuesday, the highlight of which was taking care of our grandson. In the afternoon, a new refrigerator/freezer was scheduled to be delivered but we received a call that it would be delivered a bit late…right around our dinner hour.
I decided we wouldn’t want to cook that evening because we’d be waiting for the delivery (happened just after 4:30 pm as it turns out) and we’d be getting it filled with all the food we had placed into numerous coolers earlier in the day with solid ice blocks to maintain the foods’ integrity.
While our grandson napped I slipped out of the house to pick up a pizza at the Take and Bake pizza place nearby, leaving Lucas in the very capable hands of his grandpa. I don’t yet feel comfortable walking and carrying our grandson so Jerry needed to be the one who remained at the house so he could pick Lucas up out of the crib if he woke up before my return.
I snagged a parking space right in front of the shop so I didn’t have to get out my disabled parking pass. I hobbled into the pizza place, paid the employee for our pie, and tried to juggle my purse, my cane, and the pizza all at the same time, failing miserably in my attempts to do so. The young man quickly got out from behind the counter and said, “I’ll take the pizza to your car for you.” What a relief, and what a kindness. He didn’t know my car was so close by; it could have been anywhere in the two-days-before-Thanksgiving crowded supermarket parking lot.
And that’s this week’s kindness story.
Rewarding Alzheimer’s family caregivers
November is National Caregiver Appreciation Month, a time to recognize the long hours, sacrifice, and love all caregivers bring to the task of caring for a loved one with dementia or any long-term illness. In honor of their efforts, AlzAuthors is hosting an eBook sale and giveaway! This is a terrific way for caregivers who are looking for knowledge, guidance, and support to find carefully vetted books to help guide and inspire them every day.care
Consider this information from the Alzheimer’s Association:
- In 2016, 15.9 million family and friends provided 18.2 billion hours of unpaid assistance to those with Alzheimer’s and other dementias, a contribution to the nation valued at $230.1 billion.
- Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older.
- 41 percent of caregivers have a household income of $50,000 or less.
- Approximately one-quarter of dementia caregivers are “sandwich generation” caregivers — meaning that they care not only for an aging parent, but also for children under age 18.
Starting today through November 21st, you can take advantage of this excellent opportunity to check out some of our books at reduced prices, ranging from free to $2.99. We offer a variety of genres, including fiction, memoir, non-fiction, and children’s literature. Many of our books are also available in paperback and audio, so be sure to check them out too. As a matter of fact, my novel is available on Kindle for just $2.99 through November 21st and if you prefer a paperback copy, my publisher is offering it at half price on my publisher’s site. Check it outhere!
Kindness Fridays
According to the 2017 Alzheimer’s Association Facts and Figures research, there are more than 15 million Americans providing unpaid care for people with Alzheimer’s or other dementias. Some have assembled a team of family and friends so the responsibilities are evenly spread out, but that is not always the case. The solo caregiver manages—or tries to manage—everything on his own.
That’s where those who are on the outside looking in can become a caregiver’s hero.
OFFER TANGIBLE ASSISTANCE. We will never be wrong in assuming the caregiver needs help so rather than saying, “Call me if you need anything” we can ask, “What exactly do you need?” If we remember what we needed when we were on the mend from illness or surgery we should be able to come up with an endless list of concrete gifts of assistance.
MEALS. You need to cook for yourself and/or your household anyway so make a double recipe, pack that extra portion in a disposable dish, freeze it, and keep doing that for a week and deliver one full week’s worth of frozen meals to the caregiver who, receiving your food offerings, can look forward to not having to be creative in the kitchen at the end of the caregiving day. Engage others to sign up for this dinner on wheels program so the responsibilities are spread out amongst many.
ERRANDS. You’re running to the store for a few items; take the time to ask Sam if there’s anything he might need while you’re out. He may need a half-gallon of milk—and he might have needed it for the past several days—but embarking on that task proved impossible for him. With very little effort on your part you can make a huge difference in Sam’s well-being. Maybe the needed item is toilet paper; acquiring that for him makes you a genuine hero!
CHORES. The last task a time-strapped caregiver considers doing is housework or yardwork. You will not insult your friend or neighbor by offering to vacuum their house or clean their bathrooms. Or perhaps it’s a lawn that needs mowing or a flower bed, weeding; that sprucing up will provide the caregiver with a virtual—and literal—fresh view of their circumstances.
OTHER OPTIONS. Sam may turn down home improvement offers but he might say, “What I could really use right now is some help figuring out Nancy’s health insurance statements.” Or he might say, “My wife’s not much of a conversationalist anymore, I’d give anything to have an hour to talk with someone who is. Could you stop by later today for a visit? I’ll even talk politics if it means having someone else to talk to.”
WHAT I KNOW FOR SURE. The family caregiver has so much going on physically and emotionally, offers of assistance can be the salve that gets them through each day.
Grief: Your caregiving friend is grieving the loss of a person who is still with him. Unlike the sudden death of a family member, the Alzheimer’s caregiver suffers the prolonged loss of their loved one—oftentimes called ambiguous loss—because although physically present, the person with dementia is continuously leaving their loved one.
Exhaustion. Physical, emotional, and spiritual exhaustion sneak up on the solo caregiver and they are killers. The solo caregiver must put their needs above those of the one for whom they are providing care and sometimes they need you, the outsider, to help them prioritize those needs. Just like the airlines’ seatbelt instructions, the person meeting the need requires attention before the one requiring it.
BOTTOM LINE. You have so much to offer the time-strapped family caregiver; your gifts of kindness are more valuable than you could ever imagine.
Do you want additional insight into what caregivers with whom you are acquainted are facing? You can order Requiem for the status quo at Barnes & Noble and Amazon as well as all online and brick and mortar chain and independent bookstores. And if you have already read my debut novel, please consider leaving a review on the online retailer’s website of your choice.
Meet Marita Golden, author of “The Wide Circumference of Love” — AlzAuthors
Silent Storm: What We Remember, What We Forget, What We Discover A Novelist Meditates on Writing about Alzheimer’s By Marita Golden I didn’t choose. I was called. That’s how inspiration, art, and creativity work sometimes. I am often asked why I wrote a novel about Alzheimer’s disease. I am not caring for anyone afflicted with […]
via Meet Marita Golden, author of “The Wide Circumference of Love” — AlzAuthors
Kindness Fridays
I kind of blew it this week, so here is me being very transparent with you.
Tuesday of this week was the day my husband and I had multiple appointments to take care of. After I spent all morning having pre-surgical tests completed at the hospital in preparation for my October 9th hip replacement, I raced home to grab lunch, did some writing business in my home office, and then set out again for another doctor’s appointment that was originally scheduled for 1:30 but my doctor’s office called earlier that morning to reschedule the appointment to 2:45. I wasn’t happy with that change but sometimes – all the time – you just gotta go with the flow.
The problem was, my attitude wasn’t flowing very well by the time I arrived at said doctor’s office at 2:35 pm when the front desk employee told me my appointment was not until 3 pm.
“No, when this office called me this morning to change my appointment time, they specifically said the appointment time was 2:45, there was no indication that 2:45 was the check-in time.”
“I’m sorry, but no, the check-in time is 2:45 for a 3 pm appointment.”
I knew getting all huffy wouldn’t change the current situation but I chose to be huffy – it really is a choice when we choose to be huffy and that’s what I chose to be at that particular moment in time. I’m sure the front desk employee wasn’t the one who called that morning to tell me of my revised appointment time but I guess I felt I had a right to be upset.
Don’t get me wrong, I didn’t yell, I didn’t accuse anyone of being incompetent or anything as brash as that, but I let my mood transfer to that poor unfortunate employee and it was selfish of me to do so. You see, being kind is a conscious decision we make, but not being kind is a decision we make as well.
Fortunately, I had to return the next morning for a medical test and the same employee was at the front desk. I explained that the previous afternoon when I was checking in for my appointment I exhibited a bad mood toward her and I wanted to apologize for it. She thanked me and added that she didn’t think I was in a very bad mood at all. But I’m still glad I apologized. The Universe gave me an opportunity to make things right, and this time I chose wisely.
Kindness Fridays
Community. That’s what this world needs: a unified body of individuals.
That doesn’t mean we all have to have the same political, social, or religious affiliation. What it does mean, however, is that we choose to live in unity and in support of each other.
Have you had the experience where you’re having a pretty darn good day and someone says or does something to you and your entire day’s direction is negatively altered?
In the alternative, have you experienced a bad day when someone says or does something to you and your entire day’s direction is altered for the better?
In the former, someone chose to live separate from you; chose to not recognize you as his or her fellow man; chose to harm you and widen the gap between the two of you.
In the latter, a kind-hearted person chose to come out of themselves; chose to join with a fellow survivor on this planet where division and hatred would seek to become the norm; chose to bridge the gap between the two of you.
My modus operandi is that I assume each person with whom I come in contact during my day needs my friendly words and actions in order for their day to improve. I believe in most cases I’ll be right on the money with that MO.
I mean, it sure couldn’t hurt, could it?
Kindness Fridays
Although the solar eclipse is a thing of the past, I’d like to report about a kindness our neighbor extended to us on that same day.
On Solar Eclipse Day, my husband and I were taking care of our grandson at our house. We didn’t take him outside, of course, and we decided we would watch the eclipse on the various television programs covering it live.
Our across the street neighbor texted me to ask if we were watching the eclipse outside. I responded that we hadn’t acquired any of the special glasses so we were not.
Not more than a minute later, our doorbell rang and there stood Ian with a pair of viewing glasses for our usage; he had an extra pair and wanted to make sure we had a chance to watch an event that certainly would not occur again in our lifetime.
And what a sight to see! So glad Ian’s generosity made it across the street to our house.
Honor thy father
My father was the inspiration for my novel Requiem for the status quo.
I have held three author events since my novel’s release back in July and I have more planned before the end of the year. At the senior centers and independent bookstores where my events are hosted, each person attending is certainly there in support of my efforts, but more importantly, I believe their presence honors my father’s story, a story without a happy ending.
Here’s an excerpt from my novel that speaks of my fictional characters’ dilemma, but it also mirrors that which occurred in my real life experience with Alzheimer’s.
If it’s true that cancer is no respecter of persons, it is equally true that Alzheimer’s disease exhibits the same lack of respect. This disease is a murderer and I’m troubled by the millions of crimes it has gotten away with.
Alzheimer’s is also a robber, not only because it robs a person of his or her memories and future, but also because it exacts an emotional price that few can afford. To be sure, monetary costs are a challenging force to be reckoned with, but many family caregivers and their loved ones would no doubt conclude that the emotional toll on a person far surpasses even the costliest of care fees paid.
Until the person with Alzheimer’s or other dementia becomes blissfully unaware of the disease that is murdering him, he has a front row seat to all that is happening. My dad was the first to know when his senior moments became more than a quirk of the aging process. It grieves me to imagine what he went through when he was alone with his thoughts, witnessing first hand where those thoughts were taking him.
Yes, my father had a front row seat to the effects of a disease that is always fatal. Until he eventually became blissfully unaware, he lived with that fact every single day. If the caregiver thinks she or he has been dealt a bad hand in relation to Alzheimer’s, imagine if you possibly can how that hand plays out with the person diagnosed with the disease. I don’t know about you, but my imagination in such matters paints a picture I’d rather not see.
My very real reward for writing my novel is that my father is honored as a result of my efforts. Additionally, it is my sincere hope that those reading my novel and attending my author events manage to discover that they have a cheerleader in their corner…me.
Kindness Fridays
A bit unusual post on my part.
I have a medical condition – going on 2 years – for which no medical professional has provided a solution.
This condition has caused 8 nights of no sleep due to its symptoms in the last 6 weeks alone, and many other sleepless nights in the past 24 months. We cancelled a trip September 2015 because of it.
The most recent episode had me calling the specialist office to reach the on-call doctor this past Sunday. He is not my normal specialist but he provided a treatment that two of his own fellow physicians were not able to provide for the past 2 years.
Today I celebrate the kindness of a medical professional who took the time, on a Sunday, to prescribe the right treatment for me. He is my new specialist. Quite frankly, he is my medical hero.
This was and is a kindness that has made a huge difference in my health.
Community discussion on Alzheimer’s disease
Saturday, August 26th, 3 pm
I am excited about my next author event which will take place at Book Tree in Kirkland, Washington.
Book Tree is a fabulous, quaint, neighborhood bookstore that truly excels at bringing the community together.
Here’s the content of their website’s About section:
BookTree is a vibrant gathering place for the exchange of ideas, and discussion of books and the literary arts. It is a place where all are welcome to continue their journey, expand their knowledge, feed their interests and further their education through books and literature. It is a place for families to find and enjoy the best of current literature. A place where our customers can hear local and traveling writers, authors and poets present their work.
BookTree is one of the few remaining independent bookstores on the Eastside that will be an important part of our city’s identity. It will be successful because of the generous support of our community who values a stand-alone retail bookstore.
BookTree is owned by 2 people who are passionate about the inherent value of books, reading, writing, listening and sharing diverse ideas, and viewpoints.
I hope to see you on the 26th!
Kindness Fridays
Very briefly, I’ll relay a kindness that was gifted me earlier this week.
I entered an elevator in a business building occupied by two other patrons from higher floors. People who share an elevator with me are always caught unawares because I’m one of those annoying people who talk to others in elevators while the rest of the general population pretends they are invisible as they hover in the corner.
This older gentleman – older than me by at least ten years – had on the brightest green sneakers…there was no way I wouldn’t compliment him on his choice of footwear. He explained that he wears those sneakers when he’s riding his bike through the streets of Seattle – plus lots of lights and flashers – because he doesn’t want to end up as a bicyclist pancake on the street.
We arrived at the Lobby floor, much to the delight of the other, non-talkative elevator occupier, and I extended my hand for her, and the older gentleman to leave, after all, they occupied the elevator prior to me. That is the unwritten right of passengers.
No. That was not to be the case. The older gentleman waved me ahead of himself because he still maintained the courtesy of letting women go first.
That’s all; that’s my kindness, and it was delightful.
The secret of Alzheimer’s disease
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.
Living: the ultimate team sport 