R.B. Bailey Jr.’s blog comes close to being a one-size fits all website because of its inclusion of multi-facted and varied postings that attract the viewing needs of a broad population.
Check out and follow his blog as I started doing just the other day.
I hope you’ll visit – and even follow – his site. It deserves to be in your Favorites folder.
Two years ago today, my sister-in-law died from Alzheimer’s disease.
Four and a half years post diagnosis, Nancy Satterberg Desonier was liberated from the cognitive chains that stifled her creative and loving essence, and dramatically shut down her stately and classic physical body.
Another thing happened on July 4, 2012: Nancy’s caregiver husband, my brother Don Desonier, lost his bride of almost 25 years. Don didn’t feel liberated – he would have gladly continued on his wife’s disease journey as the supportive and attentive husband that he was – but he could celebrate the fact that this devastating disease was done robbing he and Nancy of a quality-filled life, and he could take comfort in the fact that his wife’s suffering had come to an end.
I celebrate Nancy today and the thousands upon thousands like her whose lives were cut short by Alzheimer’s and other dementia.
I also celebrate my brother Don and all the caregivers who provided loving support to a loved one who has passed from this disease. You are a hero to many, and you are a hero to me.
Alzheimer’s Foundation of America Teens (AFA Teens) brings hope that is sorely lacking from the Alzheimer’s medical community. The younger generation is doing something that many of us older adults are not: bringing more awareness to a disease that most of us have been exposed to, either peripherally or specifically. “AFA Teens, founded by a teenager, seeks to mobilize teenagers nationwide to raise awareness of Alzheimer’s disease, and to engage, educate, and support teens and their families.”
My family in the 70s. My dad died from Alzheimer’s, as did my brother’s wife.
As adults, we are affected because the person with the disease is our spouse, partner, sibling, or older relative. But what about the cousins, nephews and nieces, children, and grandchildren out there? Children and teenagers are also exposed to this disease. The challenges faced by teens who are actively involved with these relatives – living close enough to have frequent interaction with them – are challenges that adults have a hard time grasping.
“How come Pappy doesn’t recognize me any more?” “Why does mom always forget the things that are important to me – like my birthday!” That’s right; some teenagers have mothers or fathers with early-onset disease. What should be one of the most exciting times in their young lives is instead spent as a co-caregiver with their other parent. (I addressed this unfortunate family dynamic in my article, Alzheimer’s Heartache: young family members adjusting to a grandparent or parent with dementia.)
I strongly encourage you to visit the AFA Teens website. I know you will be encouraged by the efforts being made by these young advocates.
A NY Times article, When Advance Directives are Ignored, paints a frustrating picture of how and when the best laid plans can come to naught. I am an absolute, card-carrying advocate of Advance Healthcare Directives, also known as a Living Will. I am more concerned about people dotting their i’s and crossing their t’s while preparing their last healthcare wishes, than I am about what people want done – or not done – towards the end of their lives.
You see I couldn’t care less whether you wish to extend your life at all costs – allowing all heroic methods to be employed while on your death bed to take advantage of every second of life available to you – or you simply wish to be made comfortable with the usage of palliative measures while you transition from this life to the next. What does matter to me, however, is that you secure those wishes in a binding legal document while you’re still able to do so. (I am not a lawyer; I am a daughter whose mother and father gifted their three children by laying out their final wishes on paper years in advance of the end of their lives.)
I’ve written four articles addressing this topic in the past few years. I hope you will peruse them, especially if you’ve not yet taken steps to prepare for your exit from this life in the manner in which you choose.
The Longest Day. The attached article by Author, Ann Hedreen, can be found linked above, and you can find additional well-written articles on her blog The Restless Nest. Reader alert: Ms. Hedreen’s book, Her Beautiful Brain, will be released September of this year.
What was your longest day like?
Was it long, because it was fun-filled and absolutely fabulous, or was it long because the day was crammed with the most difficult and stressful experiences of your life?
Caregivers: you are heroes to all who understand the job that you’ve taken on as carers for your loved ones. You live the 36-hour day with all of its burdens and insurmountable challenges, while across the United States there’s much discussion – even controversy – over raising the minimum wage. In contrast, there you are earning no wage but working harder than you’ve ever worked before.
Loved ones with Alzheimer’s or other dementia: your disease-controlled days might seem to have no beginning or end; you go about your day trying to fulfill its challenges while perhaps being at the stage in your disease where you are still able to feel the frustrations of not grasping the how-to of tasks that prior to your diagnosis required no complex thought processes on your part.
Those who have yet to be intimately involved in the above-mentioned roles: look around you – you won’t have to look far – and then on this year’s longest day, Saturday, June 21st, do what you can to help the co-worker or neighbor who desperately needs your help but doesn’t know how to ask for it, or is too ashamed to admit that they can’t do it all.
When you offer help, please don’t leave it open-ended. Instead of saying to your neighbor, “Hi yah, Joe. Be sure to call me if you need anything,” be more specific so it’s easier for Joe to accept your offer, “Joe, when I get out my lawnmower this weekend, I’d love to swing by your place and take care of your lawn so you won’t have to.” Or how about, “Yah know, we’re always making more food than we can eat at our house so we just freeze the leftovers for another time. Can I come by later this week and give you a week’s worth of meals so you don’t have to concern yourself with what to fix for dinner?”
And then keep it up because your neighbor or co-worker’s life isn’t going to get any easier. Keep offering tangible ways in which to provide assistance and you’ll go a long way towards making the longest day – which is every day in the life of a caregiver – a bit easier to tackle.
A May 15, 2014 New York Times article, Alzheimer’s, a Neglected Epidemic by Ginia Bellafante, provides a keen look at a fatal disease that many still assume is one that only other people get. Maybe my coworker a few cubicles away from me or the neighbors down the street will have to deal with some sort of dementia, but not our household – right? You wish. Alzheimer’s is a world-wide epidemic and it’s knocking on your front door.
In 2010, Alzheimer’s was the underlying cause in 500,000 deaths in the United States.
Let’s look at another epidemic with horrific fatality totals. Remember the AIDS crisis? As of the year 2010, in thirty years’ time, AIDS was responsible for 636,000 deaths in the U.S. And yet Alzheimer’s – a very unpopular disease that is erroneously characterized as just an old person’s disease – racked up almost that many deaths in just one year.
Alzheimer’s isn’t just for geezers any more.
That’s the title of one of the chapters in my manuscript – a work of fiction that centers on the lives – patients and their family caregivers – affected by Alzheimer’s or other dementia. A couple of my characters are in their 80s but there are three characters ranging in age from early 40s to mid 60s whose disease journey began when they were no longer considered young – but definitely not considered old.
What will it take to push people out of denial and into activism?
In the New York Times article linked above, AIDS activist, Peter Staley, is quoted as saying, “The hidden blessing of H.I.V was that it hit a community, my community, a community of mostly gay men. We had a base of organizing that came out of Stonewall.” [1969 demonstrations by members of the gay community in response to a police raid at Stonewall Inn, in Greenwich Village.] And then he goes on to say, “Alzheimer’s hits old people. There is no real organized community beyond AARP.”
I’m not happy with Mr. Staley’s characterization of Alzheimer’s as an old person’s disease because it perpetuates a myth that is simply not entirely true. But I fully back his advice to all of us:
How does a large, affected community get the country to care? It means playing a strong inside game: These family members need to organize effectively; they need to find their allies in Congress; they need to show up with sick people in front of key members of health communities.
Right on.
Alzheimer’s struck my dad in his mid-80s and my sister-in-law in her early 60s – both now deceased.
If you have been bitten by a dog you’re in good company. I read the following statistics in the May 16, 2014 issue of the Seattle Times newspaper:
In 2013, 4.5 million Americans were bitten by dogs in the United States;
The above total includes more than 2 million children and almost 5,600 U.S Postal Service employees.
Gee, statistics for 2014 will include me in the number of Americans bitten in the United States. I seem to have greater potential for becoming part of those statistics than making a name for myself as a published author.
Future Margarita rewards for when my manuscript gets picked up.
The title for this article is my shameless attempt to keep my novel-writing in the forefront of everyone’s minds.
I’m pretty excited however – not by the dog bite episode of May 7th – but by the status of my manuscript. I’ve almost finished reading it through – for the zillion’th time – and thus far I’m pleased with the cohesiveness of the storyline. I’m still making edits in grammar and punctuation – semi-colons and hyphens/dashes are really stymieing me – but I’m hoping if I do my very best, a copy editor will do the rest. I am 100% certain that an agent will want to represent a book that throws a personal and touching spotlight on those who are living with Alzheimer’s and dementia. There’s not an agent or publisher out there who hasn’t been affected by this disease – either peripherally or specifically.
Please stay tuned as I will be providing updates in an effort to keep me on my toes, keep me honest, and get this d@*#mn book published.
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;
Photo credit: Rob Owen-Wahl
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.
Dining room at my dad’s memory care facility.
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.
If you are a responsible dog owner who maintains control of your animal and does not allow it to leave your property without being under the control of a leash, you don’t need to read any further.
If your dog or dogs routinely leave your property and have access to any person walking near your property, then please pay attention to what I have to say.
I was bitten by a dog yesterday.
My neighborhood walking area.
I live in rural Redmond, Washington, a beautiful area providing many scenic areas for residential walks. Many dogs live in my rural neighborhood, and some of their owners have given these dogs carte blanche to freely run around the neighborhood – a neighborhood that has many children I might add. But I digress. Said carte-blanche-provided dogs don’t feel compelled to limit their pooping activity to their owner’s property, therefore when they roam the streets of my neighborhood and feel the urge to purge they do so and because they don’t have opposable thumbs they do not clean up their poop. Disgusting for those of us who enjoy walking through the neighborhood. But again, I digress.
Need I say more?
These same dogs whose owners disobey the local leash law have full access to any child, adult or older adult person they come across. Now to the point of my story. I am a prolific walker and there is no street in my rural neighborhood that I have not traveled. Yesterday afternoon I was minding my own business, enjoying a break in the rainy weather by taking a walk, when I turned onto 272nd Avenue NE, Redmond, WA 98053, when half-way down the block my walk was interrupted by two white-haired maltese-like dogs running out of their human’s property directly into my path. My normal modis operandi in these instances is to tell the dog “No! No!” or words to that effect, and casually continue on my way.
Not this time. These two dogs stayed at my heels, not letting me proceed on my own, bearing their teeth, barking like there was no tomorrow, and in a progressive show of defiance, one of them jumped up and bit me on the back of my left calf. Okay, now I’m mad. I’m screaming at these dogs to get away so I can leave the area, and they’re not buying it. Where’s their human? I guess the human was yelling for her dogs, although I couldn’t hear her over their barking, because one of them ran back onto the human’s property, leaving the other dog to continue on its terroristic rant at my expense. (Perhaps said dog has “small dog syndrome”?) Anyway, I was going to use my pepper spray on the remaining mutt but it was acting so vicious, I feared I would only aggravate the situation.
I finally heard a female human’s voice calling the remaining hairy terrorist, and that dog ran back onto the owner’s property. At this point I am approximately 25 feet way from the gravel driveway and did not see the human, nor did I want to exchange conversational pleasantries. I feared that if I walked back to the foot of the driveway to confront the human, her maltese-like dogs would consider me a threat and demand a pound of flesh from me. Instead I yelled, “Your dog bit me!” to which she replied, “Sorry.” She did not walk off her property to the street to see if I was okay. I walked slowly away, looking back to see if she would do so, and she did not.
The balance of my day: at the advice of my doctor’s office when I called to tell them about my dog bite – 3 puncture wounds on my calf, drawing blood – I drove to the nearest hospital emergency room to receive any treatment the ER physician deemed necessary. Fortunately no stitches were required and because there have been no confirmed rabies cases reported in King County – the county in which I live – in the past 30 years, there was no need for preventative rabies treatment. The physician did prescribe an antibiotic, however, should the dog bite become infected.
Come on people! Be responsible dog owners!
You owe it to the general public, and you owe it to your animals, to be responsible. To their animals you ask? Of course, because a complaint such as I filed with Animal Control, including photos of the injured leg, will initiate an investigation that might result in your dog or dogs to be removed from your house.
Bottom line: If you love Fluffy, you must protect Fluffy and all with whom he may come in contact.
Sue Monk Kidd, author of numerous books including the New York Times best seller (for two years) The Secret Life of Bees, was a recent guest on Oprah Winfrey’s show, Super Soul Sunday. The description of the show indicated that the author would be talking about her true calling as a writer. That got my attention, because I’m trying my darnedest to be a writer. Correction: I am a writer, I’m just not an author yet.
Perhaps you’re asking, “Do I have to have a calling?”
No, you don’t. I can only speak for myself when I say that I’ve known that I’ve had a calling for most of my adult life. I didn’t know what it was, but I knew I had one. I always seemed to be searching for the right project/job on which to spend my time. As an employee, and as a volunteer, I did my work superbly, always trying to be the best version of myself – and for the most part, I was.
But something was missing. I always felt that I hadn’t latched on to what I was called to do. I can describe how that felt by using Sue Monk Kidd’s experience when she switched from being a nurse to being a full-time writer. For her own reasons, Sue Monk Kidd felt “out of alignment” and she didn’t feel she was “in a place of belonging” as a nurse. She also described the time before she answered her calling as having “homesickness for (her) your home.” Then she made the decision to be a writer and this is how she felt, “there is no place as alive as when you’re on the edge of becoming” what you were meant to be.
Exactly.
Household garage sale to raise funds for the Alzheimer’s Association.
And she added that it takes lots of courage to get there – to activate the calling that you know is yours. Several years ago I found my niche – working with the elderly. For six and a half years, I worked in the senior housing industry. For five years after that, I volunteered as an Alzheimer’s Association caregiver support group facilitator, and another five years as a Certified Long-term Care Ombudsman for the State of Washington. Good stuff, and it felt right, and it was. But I had yet to use that wealth of experience in what I would define as my calling.
Confession: I’m a fairly decent writer.
Now hold on there, Irene, shouldn’t a calling be something at which you excel, some sort of skill that you’ve honed to perfection? In my case, the answer is no. Sue Monk Kidd validates what I mean. She said there are three things you need to be a writer: 1) have something to say; 2) have the ability to say it; and 3) have the courage to say it at all.
Ergo, I am qualified.
I believe in what I’m doing.
I am one and a half years into writing my first novel. It focuses on the lives of a group of adults who have Alzheimer’s disease or other dementia and the loved ones who are their caregivers. Woo hoo! All the work I’ve done in the past ten-plus years can be used in my calling! I excelled at all of those tasks, and some day I will excel at getting my manuscript published.
Some agent and some publisher out there wants to sign what I have to offer, and I believe that my degree of writing ability won’t get in the way of them doing so.
Have no fear all you agents and publishers who might have just read that last sentence. I am doing my best and I’m working hard at my craft. I’m not of the opinion that just because I feel I’ve found my calling I can just haphazardly go about my writing, not working as diligently as I have in the past.
I’m taking this calling seriously because the subject matter is a serious and personal one to me.
My advice to you the reader? Do what you know you’re supposed to be doing, and do it well. Whether you label that as a calling or a job matters less than if you believe in what you’re doing and are committed to it.
Caring for a loved one is a full-time job, as one of my fellow bloggers clearly illustrates in the attached article. Please read her article, especially if you’re not quite aware of how full the carer’s day can be.
My father died of Alzheimer’s 10/13/2007. I’m on the left, then my hubby, then my brother.
There’s a reason why the book, The 36-Hour Day (now in its 6th edition) is so popular with health professionals and family caregivers. The subtitle for the book reads, A Family Guide to Caring for Persons with Alzheimer’s Disease, related Dementias, and Memory Loss. As the former caregiver for my father who died from Alzheimer’s in 2007, I can verify that whether you are providing hands-on care or managerial long-distance care for a loved one, your job never ends. A normal day is a relative term that changes with every day or hour – or as is sometimes the case – every minute.
My article, A normal day, caregiving style, throws a spotlight on how a patient’s and caregiver’s life changes once a diagnosis has been delivered. The concept of normal is an ever-changing paradigm where the sand on the beach shifts so much, one can barely hold herself upright.
I celebrate all caregivers who manage this extraordinary task so well, and so devotedly. You are a hero to many.
Treatable Conditions that Mimic Dementia – AARP. I am so pleased that AARP published this article about false positives for Alzheimer’s disease. Because of the high incidence of Alzheimer’s disease and other dementia, we have all become very sensitive to any abnormal cognitive challenges in our lives. A few people have said to me, “I keep losing my keys. I forget where I place them. Do I have Alzheimer’s?” I’m not a medical professional but I have been trained by several in the profession. Teepa Snow, one of America’s leading educators on dementia, had this response to that type of question, and I paraphrase:
If you forget where you’ve put down your keys, you may not have dementia. If you forget what they are or what they’re used for, you could very well have dementia.
Several years ago I underwent extensive neurological testing due to troubling cognitive symptoms. Turns out, the cause was a medication I was taking. Once I went off the med, I was 100% fine.
The attached AARP article provides possible reasons for cognitive abnormalities that are not Alzheimer’s disease: medication, urinary tract infection (UTI), diabetes, thyroid, and depression to name a few. That being the case, even if you forget what the car keys are for, you still may not have Alzheimer’s or other dementia.
In my attached article, Medications: harbinger of cognitive decline? I address just one of the causes for a false positive Alzheimer’s diagnosis. Please read that article, to be sure, but also read the attached piece by AARP. You deserve to have peace of mind by finding out if your symptoms, or those of a loved one, are reversible. And by all means, be bold enough to demand that your treating physician rule out all other possible conditions before putting you through the grueling neurological testing that many physicians prescribe as first steps, rather than the last resort when determining the cause of a patient’s cognitive decline.
I wrote an article on April 6, 2014, entitled, Same sex marriage: we don’t have to agree. In that article I emphasized how abusive and intolerant we have become with our opinions, and how exclusionary we are setting ourselves up to be. If you think about it, the impetus for our very strongly held opinions is that we want to be right. If we are right, then the other person or group must be wrong. Damn that feels good!
American journalist and author, Kathryn Shuulz, spoke at TED a couple years ago, and the title of her 17 minute talk was: On Being Wrong. What Ms. Shuulz has to say is well worth all of you allotting 17 minutes of your day to watch this attached video. The gist of her message is that it’s a very big problem to have the feeling of always being right, and she explains why.
To begin with, she asked some of the audience members this question:
How does it feel to be wrong?
Their answers were: dreadful, embarrassing, thumbs down. She thanked them for their answers and then told them that they actually provided answers to a different question, that question being:
How does it feel to realize that you’re wrong?
You see, being wrong doesn’t feel like anything. We go along our merry way believing something or stating something, fully convinced that what we’re saying is right, so we’re not feeling what it feels like to be wrong. It isn’t until we discover that our strongly held opinion or belief is actually wrong that the dreadfulness and embarrassment creep in.
Many of us were raised to realize the importance of not making mistakes, or if we missed that lesson, we rapidly learned in school – and then in our working careers – that making mistakes is a big fat no-no.
But what about the statement: we learn from our own mistakes?
I can honestly tell you that I’ve learned far more valuable lessons from falling flat on my face than I’ve learned standing up on a self-righteous pedestal. Being wrong or making mistakes is not a defect. It’s a fact of life. St. Augustine would say it proves that we’re alive:
A friend from college found me through Facebook the other day and we’ve spent a couple days catching up with each other via e-mail because it has been decades since we’ve communicated with each other. I told Angie about my work with the elder-care community and I also mentioned that I’m a contributing writer for Grandparents Day Magazine (an Australian online publication), I have my own blog, and I’m writing my first novel. “Irene, did you major in English at the University?” “Nope, I majored in French. I write not because I’m an exceptional writer, but because I have something to say.”
As is the case today.
Danny Westneat of the Seattle Times wrote another brilliant column in such a way as to make you say, “Hmmmm.” What I mean is that at least for me, he opened my eyes as to how demanding some of our opinions can be. For example:
Whether you support same-sex marriage or you don’t, you have the right to say how you feel about it.
Six years ago, Mozilla CEO, Brendan Eich contributed financially to Proposition 8 in California – a proposition that opposed gay marriage. It was discovered that he had done so, and the newly installed CEO was immediately ousted. He had, however, been with the company since the 1990s, and as Danny Westneat pointed out, “There was no evidence his views against legalizing gay marriage had any effect on his various jobs at the company, including his treatment of gay co-workers.”
Putting a more local perspective on this same subject, Washington State’s 2012 Referendum 74 that would allow same-sex marriage in our state, had 5,700 names on the anti-gay-marriage monetary contributor list, including those from Amazon, Starbucks, T-Mobile, F5 Networks, Microsoft, and Boeing, to name a few. Many others were opposed to the Referendum and financially contributed against it: medical professionals, public-school teachers, a school superintendent, and a couple college instructors. The measure passed, with the voters split 53.7% to 46.3% of valid votes placed.
Is this where we’re gonna place those who don’t believe the way we do?
Isn’t that grand? Everyone was allowed to vote which ever way they wanted; a fabulous example of the right to believe/speak the way you want through the democratic voting process. But do or say something that might give ones business a bad reputation in the eyes of the majority – or even the minority – then by God, you’ve gotta go.
Where do we draw the line?
Personally, I passionately voted the way I wanted to vote regarding Referendum 74, and although I might disagree with those who voted differently from me, I respected their right to vote which ever way they wanted.
In his article, Danny Westneat talked about the fanaticism that the Boy Scouts exhibited by ousting a gay Boy Scout leader because of who he is, not because of his work performance. But the columnist added that the same fanaticism was displayed when the Mozilla CEO was ousted for what he believes.
If we are now requiring everyone to believe the way we believe; think the way we think; or vote the way we vote, aren’t we exhibiting a radical intolerance that nullifies our right to believe and speak as our conscience leads us?
I hope I never live in a world where someone figuratively puts a gun to my head to force me to think, believe, or vote the way they want me to.
Anyone who knows me, knows that would really piss me off, and it should make you pretty darn angry as well.
The New York Times article The Science of Older and Wiser by Phyllis Korkki, provides a scientific, yet personal, foray into the location of where wisdom resides.
The article also addresses levels of importance between the speed with which information is retrieved from one’s mind versus a life filled with meaning, contentment and acceptance. Speedy retrieval of information appears to belong to those who are younger than Baby Boomers while those who take longer to tap into a data-filled mind are us Baby Boomers or older for whom information retrieval falls second. Once that information is retrieved, however, it is used to gain insights and perspectives that form the basis for wise behavior and decisions.
Must everything in our lives function at breakneck speed? Consider these synonyms for fast, or quick:
speedy
swift
express
high-speed
immediate
expeditious
brisk
hasty (haste makes waste!)
from “The Colors and Letters of Jen Elek and Jeremy Bert” (Seattle-based artists)
We live in such a fast-paced world that we find ourselves snapping our fingers at how long it takes to make a cup of K-Cup (pod) coffee. We want it now! Now, I tell you! What’s taking so long? We will even pay extra when traveling by plane in order to use TSA’s faster Pre-Check security lane, and we’ll pay an annual subscription to Amazon.com to get free 2-day shipping for the plethora of things we purchase there.
But is faster always better than reflective contemplation?
Consider some definitions of wisdom provided in the above-attached article:
“True wisdom involves recognizing the negative both within and outside ourselves and trying to learn from it.” (Ursula M. Staudinger, The Berlin Wisdom Project);
Wisdom is characterized by a “reduction in self-centeredness.” (Monika Ardelt, associate sociology professor, Univ. of Florida, Gainseville);
If you are wise, “You’re not focusing so much on what you need and deserve, but on what you can contribute.” (Laura L. Carstensen, founding director of the Stanford Center on Longevity, California); and
An important sign of wisdom is generativity, which means “giving back without needing anything in return.” (Dr. Daniel Goleman, author of Focus and Emotional Intelligence, psychologist, science journalist.)
Given the descriptions for the word “fast” and the characterizations for the quality known as “wisdom”, what will your life’s main focus be as you graduate through the various stages of aging? Unless your later years involve being the fastest on the ski slopes, or the quickest person to complete the NY Times crossword puzzle, consider this element of successful aging: “(M)ost psychologists agree that if you define wisdom as maintaining positive well-being and kindness in the face of challenges, it is one of the most important qualities one can possess to age successfully.” (Phyllis Korkki, New York Times)
How readily do you bounce back when you’ve been cut off at the knees? when you’ve experienced a long streak of bad luck? when your hopes and dreams are just that: hopes, and dreams?
I am inspired to write this brief piece today because of an extraordinary act of resilience that I witness about this time each year.
Eleven years ago my daughter opened up a bridal party business that was very successful. She started the business in August 2003 and the Grand Opening of the store occurred in March of that same year. One of her vendors, a custom jewelry designer, sent her a live plant in celebration of her store’s opening. The sweet smelling floral plant was appropriately named, Bridal Veil (stephanotis floribunda).
I had the privilege of working at my daughter’s boutique from its inception, and then off and on when she needed extra help with the bridal parties. Approximately two weeks after her store’s opening, the Bridal Veil plant had come to its seasonal end so I took it home and planted it in my backyard, just underneath my kitchen window, cutting the greenery down to the dirt. And every year about this time, the Bridal Veil shoots break through the ground and seem to announce, “Spring is back and so am I.”
I am certain that you know people who have exhibited far more heroic and miraculous resilience than this silly plant’s arrival each year – so have I – but I still can’t help but be impressed and pleased, each and every year that it does. It has survived 100 degree (Fahrenheit) temperatures and 10 degree temps, not to mention a blanket of snow that manages to cover it when the snow starts falling around Washington State.
But each year, it comes back, and each year, I’m still surprised and as pleased as Punch! Definition: feeling great delight or pride.
Many of us would give up at the first degree of scorching heat and we certainly might throw in the towel when the snowflakes start to fly. I don’t want to be less resilient than the stephanotis floribunda.
And yet many drivers that are cognitively impaired are doing just that. Justin Runquist’s Seattle Times article, attached above, addresses the wave of aging drivers that has swept onto our roads. I’ll be the first to admit that dementia isn’t always the impairment associated with aging drivers. Sometimes medication side effects and/or slower response times – even without Alzheimer’s or dementia – can be the cause of accidents that can harm the driver, and anyone in his or her path.
In this article, however, I address the type of DUI that does involve dementia. As I mentioned in my two part series: Driving under the influence of dementia and Part 2 of that article, there are far too many news reports covering the risks of impaired driving – many of which end in disaster.
My dad (circa 1980’s) gave up his car keys shortly before being diagnosed with Alzheimer’s.
How can we possibly take comfort in denying that either ourselves or our loved ones should no longer get behind the wheel? This type of denial is dangerous but it is possible to get around the difficulties associated with this subject without alienating yourself or others.
For those of you who are still driving and who have considered even once that you shouldn’t be doing so – please read all the articles attached within this blog entry and then decide if you still feel comfortable driving a weapon that might kill you, or someone in your path. And for you adult children who have felt the same uncomfortableness surrounding your own parents’ driving skills – take heed and act before it’s too late.
Approaching The Final Destination. The attached article focuses on one caregiving journey that is coming to an end. Chris McClellan’s caregiving journey is coming to a close because his partner, TLO, is approaching his final destination. Recently, another blogger that I follow, who was the caregiver for her husband, Chuck, came to the end of her caregiving journey because Chuck approached, and reached, his final destination.
Each caregiver/blogger that I follow has said the same thing in almost the same words that echo how Chris describes the tenor of the day-to-day life of a caregiver: “I’ve come to realize that what I might think is a routine day, is totally off the charts by normal standards. I’m sure most family caregivers can get in touch with that.”
Whether a loved one needs care because of cancer, as in TLO’s case, or Alzheimer’s, as in Chuck’s case, the lives of both caregiver and patient are forever changed once a diagnosis is pronounced. The 10-15 minute medical consultation in an exam room or a doctor’s private office thrusts the recipients into the as-yet-unknown world of living with a terminal illness.
My father and my sister-in-law, both of whom died from Alzheimer’s.
My brother’s wife, Nancy, was diagnosed with mixed dementia when she was barely 65-years old. In the first article on my brother’s caregiving blog, he also characterizes diagnosis day as the day his life, and that of his wife, changed forever.
Normal becomes a shifting paradigm that can look different from month to month or moment to moment as a loved one’s disease progresses towards its final destination. Both caregiver and patient can’t recall – for one reason or another – what normal used to mean before the disease’s arrival in their lives. I know from personal experience with my father, that the caregiver truly can’t imagine life without caregiving – so all-consuming and life-changing is a fatal disease in ones life.
Normal? What does that mean? And in the midst of caregiving, you become aware that the only escape from this new and ever-changing normal is the death of the one for whom you provide care. What liberation! What freedom lies on the horizon!
No, that is not what the caregiver is thinking. He or she is focused on the here and now, because such focus is required in order to adjust to the shifting sands of normalcy.
But the end does come as it did with my father on October 13, 2007, with my sister-in-law on July 4, 2012, with Chuck in late February 2014, and as will happen with TLO once Chris and TLO’s journey comes to an end.
What we all would give for just one more day of abnormal normalcy with our loved ones.
But all journeys come to an end, and none of us would rob our loved ones of their final escape to a destination towards which their lives had been headed since their own personal diagnosis day.
Freedom from pain; freedom from physical and cognitive restrictions. Let it be.
It’s not often – or ever – that I would tout the beauty and benefits of mice, especially since where I live in a very rural part of my city, mice are a force with which to be reckoned during their annual winter attempts to seek warmth in crawl spaces, attics, and home interiors.
Today, however, I am making a one-time exception because it appears that mice brains have become very valuable in the medical and science worlds’ attempts to map the human brain, and mapping the human brain contributes to the effort of solving brain diseases such as Alzheimer’s. I’ll leave it up to you to read the full article, attached above, because my efforts at summarizing scientific jargon would fall short of doing that science justice.
What I will say, however, is that I am extraordinarily excited that valid attempts are being made to decipher the science of our brains; attempts that generate hope in the lives of those of us who have personally experienced the destruction of a loved one’s brain by Alzheimer’s – a disease that I’ve been known to call “a murderer.” Read my article, Alzheimer’s disease is a murderer to understand the full impact of my feelings on the subject matter.
I know that a lot of behind the scenes research is being done to eradicate a disease that is always fatal, but we aren’t always privy to what that research looks like. I’ve read numerous horrific statistics about the numbers of people who have – and will have – Alzheimer’s in the years to come. Part of those statistics include the detailed monetary impact on society as a whole, as well as the personal and emotional costs to each of us who have dealt with, and who have yet to deal with, the disease’s intrusion into our lives.
I congratulate the Seattle Times and the New York Times, for publishing the above article. And I sincerely thank the Allen Institute for Brain Science for taking on a task whose efforts will benefit every last one of us in this country, and around the world.
You are my hero Paul Allen. Keep up the good work.
If the monster called Alzheimer’s is going to get you, you may as well be prepared.
How I’m Preparing to Get Alzheimer’s, is a 6 minute and 24 second video recorded in June 2012 at TED Global in Edinburgh, Scotland. This brief talk by Alanna Shaikh will do more to wake you up about this disease than anything you’ve heard thus far.
If there is even the slightest chance that one of us will get Alzheimer’s or other dementia – and trust me, there’s more than the slightest chance – then we’d better start shaping what Alzheimer’s will look like for you and me. Here’s an example.
Ms. Shaikh’s father has Alzheimer’s and she talks about the various hobbies and interests held by her father when he was healthier and how those interests carry through during the Alzheimer’s disease process. He was a college professor at a state school and as Alanna put it, “he knows what paperwork looks like.” Now in the depths of his disease, someone can put any type of form in front of him and he will gladly fill it out, arbitrarily writing his name or numbers on the various lines provided, and he’ll check the boxes littered throughout the form. He flourishes in that engagement of his time.
What happens, however, when your favorite hobby pre-disease is reading and editing academic journals, racing cars, or using electric shop tools to make beautiful well-crafted furniture? How will those hobbies or skills survive the disease process? Not very well. So Alanna has come up with three things that she’s doing now to prepare her for the possibility of the Alzheimer’s monster invading her life.
Please watch Alanna’s video. I think you will be impressed by her thought process.
The above mini-article, This Magic Moment, by a fellow blogger, is magnificent in its message of hope, love, and connection.
Caring for a loved one with Alzheimer’s or other dementia, in this instance a spouse, is a difficult task and so very unpredictable. Sometimes the unpredictability brings heartache and extreme difficulty.
However …
sometimes the unpredictability results in a heart filled with renewed promise of goodness and beauty. Celebrating every victory that comes our way – regardless of how small some may think it to be – is reason to strike up the band, blow up the party balloons, and relish the joy that exists in that very moment.
Click on the link above to read about one man’s journey from spousal caregiver to professional coach of those who are caring for loved ones with Alzheimer’s or other dementia.
My hero – my father: 1918 – 2007
During my time of caregiving, (my father died in 2007 from complications relating to Alzheimer’s disease) I oftentimes sought out the advice of anyone I could get my hands on who might a) lighten the emotional load I was carrying; b) lead me in the right direction when looking for next steps in the caregiving process; and c) let me cry a river as I pondered whether I was doing enough for the one for whom I provided care.
Way back when I was enmeshed on my caregiving journey, I was not aware that this type of coaching service was available – perhaps it wasn’t. What speaks volumes to me is that the prevalence of Alzheimer’s and other dementia is such that more and more people seem to be adrift and searching for that beacon of light that might pull them safely to shore.
One thing I know for sure, however, is that if it takes a village to raise a child, it certainly takes at least that when trying to take care of a cognitively challenged parent, spouse, sibling, partner, or friend.
Lately I’ve read various blog posts mentioning that employees of long-term care (LTC) facilities are routinely disregarding the rights of their residents. What’s that you say? You didn’t know that when these older folks walked through the doors of a facility, thus giving up their cherished long-term independence, they actually gained rights that they never had before? Here’s some information that will benefit you and your loved ones. I’ll explain by way of providing a few examples:
Charlie moves his mother into a facility and the head of Health and Wellness strongly suggests that he not visit her for awhile so she can adjust to living in a different environment.
WRONG! If mom wants her son to visit her, Charlie should ignore the “advice” of the H&W employee and visit mom as often, and as long, as he and his mom wishes. Logic: What do you think benefits mom most? The calming presence of her son who has been the only constant in her life, or the absence of any person or thing that would lessen the feeling of abandonment in a strange environment?
June, who is confined to a wheelchair, is forced to go to an activity by facility staff. Apparently June’s family has asked staff members to make sure that June gets out of her room and socializes with other residents. On this particular day June would rather stay in her apartment and watch game shows on television.
Who wins this argument? June should because it’s her life, and neither staff, nor family, can force her to do anything. Logic: Doesn’t someone who’s lived at least 7 or 8 decades have the right to make decisions that are important to her? Yes – and that right is protected by law. Legal implications: June is reliant on others to transport her to and from places, therefore when she’s taken to the activity room against her wishes, the law considers that action as physical restraint because she is “stuck” in the activity room and in her chair, and not able to physically move herself elsewhere on her own steam. Additionally, the facility is guilty of coercion – forcing June to do something she doesn’t want to do.
George joins his buddies in the dining room for lunch and orders a chili dog and a Bud Lite. When the meals for him and his buddies are served, George’s chili dog has been pureed and his beer has been substituted with a glass of iced tea.
Dilemma: The server tells George that his doctor ordered a pureed diet because George almost choked on a roll at a nearby restaurant and he risks aspirating on his food. The server then tells George, and anyone within hearing distance, that his doctor also said George should not drink alcohol because of his diabetes.
Rights infractions: The server talked about a medical condition in front of his buddies by mentioning two medical conditions: George’s choking hazard and his diabetes. That’s a violation of his privacy rights. George is aware of the choking incident – and he is also aware that alcohol may not be such a good idea because of his diabetes – but he is making an informed decision to eat and drink what he wants, knowing all the risks involved. Solution: Oftentimes facilities are worried about liability in these types of situations – very understandable. To resolve such a concern, all that is needed is to conduct a “care conference” in which the health & wellness director, George, and perhaps his doctor by phone, discuss the risks inherent with George’s decisions. They can easily discern that George has weighed the pros and cons and that although he acknowledges that doctor’s orders have been issued, George decides to disregard said orders. Care conference notes should indicate the gist of the discussion; perhaps everyone in attendance signs their name agreeing that what is written in the notes accurately reflects the points covered in the discussion, and then everyone should be happy and no lawyers need to be involved.
I strongly suggest that you contact the long-term care ombudsman in your state should you have any inkling that your loved one’s rights are being neglected. Visit the National Ombudsman Resource Center (NORC) and join with them to advocate for your loved one. Everyone deserves to be treated with dignity, and certainly all of you would agree that all people should have a satisfying quality of life regardless of ones’ age and residential environment.
Final thought: put yourself in your loved one’s position … what would you want done on your behalf?
Submitted by Boomer98053, a retired Certified Long-Term Care Ombudsman.
The attached 7 minute film depicts a positive take on being an adult child-caregiver for ones mother. The same could have been filmed of a spouse-caregiver because the message is the same.
Please make every effort to watch this film straight through without distraction. I believe you will conclude – as I did – that what is depicted is beautiful beyond measure.
There is no denying that caregiving is extremely difficult. But there are certain opportunities inherent with the task that create a link between the carer and the one being cared for that might not have been possible without dementia’s onset.
One of many walks my father and I took.
As the adult daughter most involved with my father’s care management, I can conclude that through all the difficulties of his Alzheimer’s journey, there was a certain richness to our relationship that might not have existed without the intrusion of Alzheimer’s in his and my life. I would have preferred that he had never suffered and died from this disease – don’t get me wrong – but I’m grateful for the deeper relationship that resulted from it.
I feel blessed to have been on the caregiving journey with my father. And my, oh my, do I still miss him.
Syndicated columnist Leonard Pitts Jr. had an Opinion piece in the January 19, 2014 Seattle Times Sunday newspaper. His article focuses on the cruelty that comes out of the mouths of people who feel they are obligated to point out the obvious to others. During and after her appearance on the Golden Globes, the exceptional 30-year old actress, Gabourey Sidibe, became the target of many anonymous, and sometimes identified, Twitter trolls who decided to remind her that she’s fat. One Tweet said she looked like the Globe in the Golden Globes; another stated that she missed the hour glass look by 10 hours.
Leonard Pitts questions when and how did this type of truly sadistic personal meanness become acceptable, even common place? “Everybody’s got something…some physical or emotional blemish measuring the distance from you to perfection.” So why do we think it’s any of our business to criticize someone else’s imperfection? Doing so is an act of judgment of someone about whom we know very little.
When us kids would say something cruel about someone, my dad would offer the following: “It’s too bad that everyone isn’t as perfect as us.” Point taken.
What happened to what Mr. Pitts calls “home training” that is supposed to teach us that there are just some things you don’t say to – or about – people in a public forum? Are these grown adults mimicking the behaviors from their upbringing, or did they just decide on their own to cut people to pieces, not caring a wit about the harm such cutting banter will have on the recipient?
Bullies – all of them.
Whether our “something” is shaped like the emotional scars of abuse, an eating disorder, physical or developmental disabilities, bad teeth, or a nose that is too big, too fat,or too small, no one has a right to inflict hurt on us by their words. Does hurting someone with words serve to downplay our own imperfections and/or personal issues? Does a person actually feel better after they’ve called someone a tub of lard, or uglier than sin, or dumber than a doornail?
I’ll leave you with Nobel Peace Prize winner, Eli Wiesel’s statement during an interview with Oprah Winfrey a couple years back. May it be a challenge to me, and a challenge to you.
As a human race, we must choose between: the violence of adults, and the smiles of children; the ugliness of hate, and the will to oppose it; inflicting suffering and humiliation on our fellow man, and offering him the solidarity and hope he deserves for naught.
Even in darkness, it is possible to create light and encourage compassion. Every moment of our life is essential; every gesture is essential. Our role in life is to give an offering to each other.
The Seattle Times newspaper has a Saturday column, Faith & Values, that spotlights a variety of religious denominations. One week there might be an article by a Catholic priest, another week, from a Rabbi, another, an Imam from the Islam faith. On Saturday, January 11th, the one who submitted her article is a minister with the Northwest Ministry Network (Assemblies of God), Jodi Detrick.
Ms. Detrick quotes several of the more well-known scriptures from the Bible that focus on hope, one of which is: “But hope that is seen is no hope at all. Who hopes for what they already have?” Romans 8:24
In my experience, I’ve found that there are many messages of hope out in the universe, and not all of them come from a spiritual text. Take Astronaut Mark Kelly’s response to Diane Sawyer on ABC’s 20/20 program a couple years ago. When talking about his wife Gabrielle Gifford’s chances for recovery from a gunshot wound to her brain, Diane Sawyer suggested that he was holding out too much hope for his wife’s successful recovery from the bullet’s onslaught. His response:
“You can’t have too much hope! That’s not practical!”
Isn’t that the truth? How limiting it would be to portion out a wee bit of hope, but not invest fully in that state of being. “In other words, it’s OK to be filled with anticipation for things that seem way out of sight and out of reach … Uncertainty is where hope does its best work,” says the columnist Jodi Detrick. Two years after the 20/20 interview, Gabrielle Giffords is doing “miraculously” better and she would argue that her day-to-day life is very complete, and very worthwhile. Thank goodness neither she, nor her husband, gave up hope!
“Hope outlasts disappointments. Not everything we hope for, happens, it’s true … Unrealized expectations can be an open door to new possibilities – options we hadn’t previously considered.” Jodi Detrick again. I agree with her statement because I’ve experienced those other possibilities. I’ve certainly couched my hopes and dreams to look a certain way, only to discover that the options I hadn’t previously considered managed to transform my hope into something better than I could have imagined.
Writing while on vacation a couple years ago.
Interestingly enough, the first hope that Jodi Detrick mentioned when she listed the types of dreams that hopeful people think about, was writing a book. I happen to be writing a book about the effects of Alzheimer’s on family caregivers and the ones for whom they are providing care – a project I started on December 29th, 2012. In the year since then, my novel has been through numerous edits – some of a substantive nature, and many that were grammar related. The mission for my book has always been to put a personal face on Alzheimer’s disease; to expand on the impressive, yet horrific, statistics on this fatal condition by making it more personal, and therefore more real.
One of my first “friendly editors” happens to have the same name as the protagonist in my book, Colleen. When Colleen read the very first draft of the very first 150 pages of my book, her first question was, “Who is your reader?” I insisted then, and I insisted for the past year, that my reader is the current or former caregiver, or the soon-to-be-caregiver who will find themselves amongst the millions of family members caring for a loved one with Alzheimer’s or other dementia. “But does the caregiver have time for the luxury of reading a novel? Or does the caregiver even want yet something else that reeks of the challenges they are currently facing?”
Crap. Of course not. But I kept on structuring the novel in my original – and stubborn – way. My second friendly editor was a coworker who was dying of cancer. Dennis wanted me to hurry up and finish my book so he could read it – “before it’s too late.” I gave him what I had. A week later I met with him and one of the constructive suggestions he gave me was, “You should be considering this novel as a textbook.” My response: “Dennis, I’m not writing a textbook. I’m not even writing non-fiction. I chose fiction as the genre because I don’t have any sophisticated initials that signify astute knowledge, such as: MD, PhD, MSW (Masters of Social Work), and the like.”
Dennis responded, “I do have a MSW and I think your novel should be required reading for medical professionals and others directly involved in Alzheimer’s care.” I continued writing, thinking that a textbook might be a secondary use for my novel, but it would primarily be a vehicle that provides hope and promise for those intimately involved on the Alzheimer’s disease journey. (Didn’t I tell you I can be a little stubborn?)
Fast forward ten months. I had lunch two weeks ago with a friend of mine, Gwen, and a woman who lives in the same apartment building as she. This woman, Liz, works for a company that provides a remarkable early-detection testing and monitoring system for those suspected of having mild cognitive impairment. I’m not here to promote the company, I’m merely providing the background of the person I met.
My friend, Gwen, brought up the fact that I was writing a novel about Alzheimer’s with a focus on the caregiver and patient journey. Immediately, Liz suggested that the founder of her company, who among other qualifications, has a PhD in Clinical Psychology, should read my manuscript. The Curriculum Vitae for each member of this company’s scientific advisory board contains more initials after their names than letters in the alphabet. These professionals know their stuff and most of it focuses on Alzheimer’s and other dementia.
I insisted that if the founder were to read my manuscript, Liz had to pave the way and do so without putting any pressure or sense of obligation on this very busy doctor. She met with him and that afternoon, Liz e-mailed me his contact information. Phew! Very long story, short, he is now in possession of the first 150 pages (the much revised version which I printed and overnighted to him) and he is taking it with him on vacation. What?!
Indeed, what? Also – what does this mean? Can I throw all caution to the wind and have even greater hopes that he and/or his advisory board will provide valuable input so that my manuscript carries more credible weight? Can I also wonder if my manuscript’s exposure to these professionals may segue into what my now deceased friend, Dennis, suggested it should be? Required reading? Whoa! The institutions of higher learning to which these professionals are attached, to name a few, are: Duke University Medical Center, University of Washington (Seattle) Medical Center and Memory Disorder Clinic, Stanford University School of Medicine, and UC San Diego School of Medicine.
I know what you’re thinking. “Aren’t you getting way ahead of yourself Irene? You could be setting yourself up for a huge disappointment.” My response to that is: Haven’t you heard? Hope outlasts disappointments.
Forgive me, if you will, because I am going to start this blog piece by quoting some of the lyrics from Katy Perry’s song, Roar. You may not have heard of this popular singer or if you have, you may not follow her career, but one of her songs resonated with me and challenged me, so thus begins a few of the lyrics:
I used to bite my tongue and hold my breath; scared to rock the boat and make a mess, so I sat quietly, agreed politely. I guess that I forgot I had a choice; I let you push me past the breaking point; I stood for nothing so I fell for everything.
When was the last time you swayed in the wind of other people’s opinions and fearing ostracism, you swayed in silence even though you disagreed with those opinions being expressed around you? What did that feel like?
You held me down, but I got up, already brushing off the dust. You hear my voice, you hear that sound, like thunder gonna shake the ground; you held me down, but I got up; get ready ’cause I’ve had enough. I see it all, I see it now…
How long did it take to break the hold that your silence had on you? How much time passed before you got up and let your “you-ness” shine forth amongst the crowds – whether those crowds consisted of strangers or close loved ones? What did it take for you to divert from the ebb and flow of popular opinion and launch your own?
I got the eye of the tiger, a fighter, dancing through the fire; ’cause I am a champion and you’re gonna hear me roar. Louder than a lion, ’cause I am a champion and you’re gonna hear me roar.
Break out of the prison where your stifled opinions have placed you.
The purpose of this open-ended article is to encourage some personal internal dialogue wherein you answer the above questions for yourselves and discern whether or not you’ve been stifling beliefs or opinions that define the essence of who you are, but which you’ve held to yourself because you don’t want to rock the boat.
What are you waiting for? The author, Eckhart Tolle would say that Now is all you have. You can’t go back and correct the past; it doesn’t exist anymore. You can’t rely on there being a future. All you have is the present moment, so do yourself a favor and stop denying who you are, and what you believe in. Take it from someone who knows – you’ll like and respect yourself a whole lot more when the real you starts living.
More Alzheimer’s patients finding care far from home | Nation & World | The Seattle Times. This article looks at the direction in which Alzheimer’s care may be shifting. There are currently 44 million Alzheimer’s patients globally with 135 million projected by 2050. Even now, Western spouses and family members are faced with an insufficient supply of qualified nurses and facilities, while other countries provide cheaper – and to some minds, better – care for those suffering from an illness for which very few effective treatments have been developed, and that is always fatal.
(Photo credit: Wikipedia)
The treatment center that is the major focus of this Associated Press article is located in Thailand – the Baan Kamlangchay center. Additional elder care options in other countries are mentioned, such as the Philippines, Eastern Europe, Spain, Greece, and Ukraine. Cost is the driving force of those who are “exporting” (not my word) the elderly to these foreign countries. One gentleman from Switzerland brought his 65-year old wife to Baan Kamlangchay because the monthly cost for her Alzheimer’s care ($3,800) is a third of what he would pay in his own country and he states that the staffing ratios are far better, and the activities more engaging. In the Philippines, care is offered to Americans for $1,500 to $3,500 a month, compared to the average of $6,900 for a private room in a skilled nursing facility in the United States, according to the American Elder Care Research Organization.
Cost shouldn’t be the only consideration, however, when moving a loved one into Alzheimer’s or dementia care – and that applies to every country in which that care is available. What are the training requirements for those who will be providing this disease-specific care for your loved one? What type of governmental or social service oversight is in place to protect and advocate for the rights of those patients who can not advocate for themselves? The latter question becomes extremely relevant when the patients’ families are not around to observe care on an ongoing basis. In the previous paragraph I mentioned the man who brought his 65-year old wife from Switzerland to Thailand for care. He is now faced with the very difficult decision of perhaps leaving his wife of 41 years in the facility, and returning to Switzerland to carry on the rest of his life.
That’s a decision unbearable in its emotional implications.
What are your thoughts? Are you willing to become an expatriate should this medical need present itself in your life?
I addressed some of the issues of Driving under the influence of dementia in an article I wrote in November 2013. Back then I hadn’t planned on writing a Part 2 for this article, but after a couple local incidents involving DUI of dementia, I must provide the following.
Yesterday afternoon in a suburb of Seattle (in Bellevue), an 89-year old woman with early stage Alzheimer’s left her house for her normal daily routine of going to her favorite pancake house, then to several retail locations. She never returned home last night and as of today, she is still considered missing. I hope the outcome of her case is better than that of another elderly person with Alzheimer’s who also went on a brief errand, but never came home. (Update as of 12/28/13 6:45 pm: this woman was found safe approximately 16 hours after she first left her home. She was found 20 miles away from home. Unfortunately, she wandered 20 miles away from her normal driving area.)
On Saturday, December 21, 2013, Joseph Douret left his Seattle area home (in Issaquah), to grab dinner. He was reported missing the next day by his wife who stated that he never came home the previous evening when he left to grab some dinner for the two of them. Mr. Douret, who was suffering from Alzheimer’s, was found dead in his vehicle on Christmas Eve. Police indicated that he appeared to have died of natural causes.
Taking away the keys to a vehicle – or getting rid of the vehicle as need be – are both very difficult tasks, but these are tasks that must take place if a loved one with dementia still has access to their automobile. “But he/she is only driving a few blocks to pick up a couple items; there’s no way he/she will get lost.” Unfortunately, what should be a routine drive can become a death journey because nothing is routine for the person with a brain addled by dementia. Nothing looks normal or familiar; the anxiety ratchets up several notches; panic sets in; and the countdown begins for that person’s last hours of life on earth. Even if the person is eventually found safe, he or she will have endured a very uncomfortable time emotionally and physically. The positive outcome of that incident, however, is that it will most likely be the catalyst that spurs people on to remove all driving options from their loved one.
Please make the decision today to take action and do the responsible thing on behalf of the person with Alzheimer’s or other dementia.
Four and a half years post diagnosis, Nancy Satterberg Desonier was liberated from the cognitive chains that stifled her creative and loving essence, and dramatically shut down her stately and classic physical body.
Another thing happened on July 4, 2012: Nancy’s caregiver husband, my brother Don Desonier, lost his bride of almost 25 years. Don didn’t feel liberated – he would have gladly continued on his wife’s disease journey as the supportive and attentive husband that he was – but he could celebrate the fact that this devastating disease was done robbing he and Nancy of a quality-filled life, and he could take comfort in the fact that his wife’s suffering had come to an end.
You see I couldn’t care less whether you wish to extend your life at all costs – allowing all heroic methods to be employed while on your death bed to take advantage of every second of life available to you – or you simply wish to be made comfortable with the usage of palliative measures while you transition from this life to the next. What does matter to me, however, is that you secure those wishes in a binding legal document while you’re still able to do so. (I am not a lawyer; I am a daughter whose mother and father gifted their three children by laying out their final wishes on paper years in advance of the end of their lives.)
What was your longest day like?
When you offer help, please don’t leave it open-ended. Instead of saying to your neighbor, “Hi yah, Joe. Be sure to call me if you need anything,” be more specific so it’s easier for Joe to accept your offer, “Joe, when I get out my lawnmower this weekend, I’d love to swing by your place and take care of your lawn so you won’t have to.” Or how about, “Yah know, we’re always making more food than we can eat at our house so we just freeze the leftovers for another time. Can I come by later this week and give you a week’s worth of meals so you don’t have to concern yourself with what to fix for dinner?”
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;
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 wrote an article on April 6, 2014, entitled, Same sex marriage: we don’t have to agree. In that article I emphasized how abusive and intolerant we have become with our opinions, and how exclusionary we are setting ourselves up to be. If you think about it, the impetus for our very strongly held opinions is that we want to be right. If we are right, then the other person or group must be wrong. Damn that feels good!
And every year about this time, the Bridal Veil shoots break through the ground and seem to announce, “Spring is back and so am I.”
It’s not often – or ever – that I would tout the beauty and benefits of mice, especially since where I live in a very rural part of my city, mice are a force with which to be reckoned during their annual winter attempts to seek warmth in crawl spaces, attics, and home interiors.
The above mini-article, This Magic Moment, by a fellow blogger, is magnificent in its message of hope, love, and connection.
Dilemma: The server tells George that his doctor ordered a pureed diet because George almost choked on a roll at a nearby restaurant and he risks aspirating on his food. The server then tells George, and anyone within hearing distance, that his doctor also said George should not drink alcohol because of his diabetes.
I addressed some of the issues of Driving under the influence of dementia in an article I wrote in November 2013. Back then I hadn’t planned on writing a Part 2 for this article, but after a couple local incidents involving DUI of dementia, I must provide the following.
Living: the ultimate team sport 