Community outreach

Teenage advocates against Alzheimer’s disease

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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, and my brother's wife died from Alzheimer's.
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.

June 21st: The Longest Day Alzheimer’s Style

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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.

Sunset in RedmondWhat 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.

Jerry and his new rideWhen 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.

 

 

Fahrenheit 451 – sort of

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The 1953 Ray Bradbury novel, Fahrenheit 451,depicts a future American society where books are outlawed and those that are found are destroyed by fire via that society’s “firemen.”  The premise of the novel has been described as representing the suppression of dissenting ideas from those deemed correct and appropriate: censorship at its worst.  This blog entry is not about censorship; it is about the possibility of losing the tactile, hard or soft cover media that has entertained billions of us over the years: the non-electronic book.

I crave books and I am never without a selection from which to choose,

Paper vs Digital
Paper vs Digital

but maybe the vehicle by which I read books – and that so immediately satisfies my hunger for more books – will bring about the demise of the tactile tome.

I’m talking about e-readers.

From June 3, 2010 through June 8, 2014, I have spent just under $3,000 on e-books.  If that shocks you, imagine how I feel seeing that number because I have to admit it doesn’t feel like thousands of dollars when I download a new book in less than a minute.  I purchased books now and then prior to purchasing my first e-reader four years ago, but most of my reading addiction was satisfied compliments of the local library system.

My completed novel, not yet published.
My completed novel, not yet published.

Caveat: I can justify a certain percentage of my e-book purchases by telling you that quite a bit of the research I perform for my writing career comes from fiction and non-fiction works that focus on aging – most specifically on Alzheimer’s and other dementia.  But even I will admit that it’s a very small percentage.

I would gladly give up my e-reader if doing so saves soft and hard cover books.

One of my family members stopped using his e-reader; he lost the passion for reading – or more accurately – he found it difficult to find a book he could dive into.  He kept going from book to book and nothing he read captured his attention.  He had a light bulb moment, however, when he discerned that the content he was reading was not lacking, it was the electronic apparatus that was at fault.  I’m not parting with my e-reader yet, but the anxiety I have been feeling the past couple months haunts me each time I pick up my e-reader and swipe the page from right to left, instead of lifting the top right corner of the page and laying it down on the left.

Sarah Jio’s most recent novel, Goodnight June, hints at what has already occurred and might very well occur completely: an absence of book stores and readers to keep them in business.  Another voiced concern in Goodnight June is that the childhood love of reading is waning.

What do you see children doing when they have free time?  Do they pick up a book like so many of us did when we were their age or are they cozying up on the couch with an electronic device?

Is it just me?  What are your thoughts?

Theological bullying

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Forced faith is not faith | Opinion | The Seattle Times.  The syndicated columnist, Leonard Pitts Jr., has proven yet again how fabulously he writes.  His writing can only attain that quality, however, if what he writes comes from a sense of justice, compassion, and truth.  Therefore, hands down – his writing is fabulous.

The title for this blog piece comes from Mr. Pitts’ article where he quotes Martin Luther King’s definition of faith as being, “taking the first step, even when you don’t see the whole staircase.”  The columnist says that given what the Sudanese Parliament has done by imposing the death penalty on one of its citizens who wouldn’t disavow her faith, “faith has less to do with hope and assurance and the courage to take steps in the dark, than with justifying just this kind of theological bullying.”

This story centers around choosing one religion over another.  My writing on this story does not pit Christianity against Islam, (or vice versa) rather, it’s a story showing a conflict between two religions that very well might end horrifically.   It’s a dramatic story because the “guilty” party, Meriam Yehya Ibrahim, a mother of two who married a Christian man, will receive 100 lashes and then she will be killed after her youngest child has been weaned – nothing short of outrageous and barbaric.

Can you require/force someone to have faith?

Can you require/force someone to love you?

Mr. Pitts asks:

Can faith ever truly be faith if it is imposed by force of law or threat of violence?  Is faith faith if it is not freely chosen?  If someone swore at gunpoint that she loved you, would you believe her?

Faith can move mountains; religion can't.
Faith can move mountains; religion can’t. (Painting by artist, Mary Riesche)

The Sudanese Parliament has no concept of what faith is.  Again, I’m not talking about Islam in general, I’m talking about the actions of the Sudanese Parliament.  Its members are simply trying to force this 27-year old woman to leave her Christian religion and follow their religion, Islam.  They are proving that they are a bunch of fearful wimps – so afraid are they of any religion that differs from theirs.  But we all know the truth: the strongest person represented in this travesty is Meriam Yehya Ibrahim.  She’s not holding on to her religion, she’s holding on to her faith.

Bullies are weaklings in disguise whose only weapon is to assert a strength they will never have.

 

 

World-wide epidemic on your doorstep

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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.

Who’s next?  Me?  My daughter?DSCF0511

You?  Are you doing your part to shine a spotlight on the hideousness of this fatal disease?  At the very least, have you made a monetary donation to the Alzheimer’s Association in your country – a donation from which you will personally benefit?  United Kingdom; Alzheimer’s Prevention; Alzheimer’s Society of Canada; Fight Dementia – Australia – to list a few.

Dog bite statistics and novel writing

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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.
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.

Like a good neighbor …

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Irma and Larry are there.

Irma & Larry on the right.
Irma & Larry on the right by the window.

My next door neighbors, Irma and Larry, epitomize what being neighborly is all about.  You can look at a previous post of mine to see what bad neighbors look like.

Today’s post provides a contrast.

In my rural Redmond neighborhood we don’t always see our neighbors face to face: some of the houses are set back from the street, and others are simply enveloped in the natural evergreen landscaping common to the area.

After last week’s neighborhood dog bite I made certain that my immediate neighbors were made aware of the vicious dogs’ location and I gave them a thumbnail sketch of what transpired.  This past Friday afternoon my husband and I were just wrapping up a mini-walk and as we approached Irma and Larry’s driveway, Irma greeted us and invited us into their house for a visit.  What awaited us was a beautiful bouquet of flowers harvested from their backyard.

Lilacs & Azaleas gracing my finished manuscript
Lilacs & Azaleas gracing my finished manuscript

Equally as precious as the flowers was the concern that both of my neighbors expressed for my doggy mishap.  These same neighbors came to my aid several years ago after I had undergone major surgery.  I assured my husband that he could return to work after staying home with me for several days and he reluctantly agreed to do so.  A couple hours into my day I was in excruciating pain.  My hubby was over an hour’s drive away, but Irma and Larry were next door.  I sent them an SOS and Irma came over to stay with me while her husband drove down to the neighborhood pharmacy for a newly prescribed medicine that would make my day a better one.  After Larry delivered the medication, Irma remained at my side until my daughter, Erin, arrived for her scheduled mommy-sitting visit at Noon that day.

The point is, good neighbors drop everything and attend to the needs of someone else.  Irma and Larry have done that time and again for this household.  It is my hope that I can catch up to their generosity and bless them as much as they have blessed me.

Delivering the best customer experience

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Regardless of the industry you represent your goal must always be to deliver the best customer experience.

Bar Harbor Cruise ShipI 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: www.definefishstudio.com
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.
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.

Mary Riesche: artist – and sister – extraordinaire

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Future artist, Mary Desonier Riesche
Future artist, Mary Desonier Riesche

My sister, Mary, has been an artist since she could hold a crayon and a water color brush in her hand.  Without giving away her age, I’ll just say that she’s been an artist for quite a few years because she is close in age to myself.

Mary in her garage studio
Mary in her garage studio

This article honors the consistency and commitment that my sister has exercised in her quest to maintain and hone her talent.  Her husband was in the United States Navy when she married him, a career that deposited the two of them and their ever growing family, all over the United States and the world.  She could have put down her sketching pencils, acrylics, and oils and figured that until the kids are grown up and out of the house, she wouldn’t have time for her artistic endeavors.  But she didn’t.  She managed her family single-handedly – and excellently I might add – while her husband was away at sea, never neglecting her family nor the craft that she loves so much.

Mary has been so diligent on this artistic journey, that I can only recall one time when she could not work on her craft.  Mary broke her right wrist falling down in front of a grocery store near her Vacaville, California neighborhood several years ago, and as happens after we cross a certain age threshold, bones break easier and take longer to heal.  But my sister was only sidelined for as long as absolutely necessary while she completed her physical therapy regimen and then – almost as good as new – she again took up the tools of her craft to pour her heart, soul, and energy into each piece.

And now that my sister and her husband are retired – and their five children are all grown and the number of grandchildren has recently increased to six – Mary continues to pick up the tools that she discovered as a youngster, and consistently makes efforts to expand her talents.

The artist in April 2014 at one of many craft fairs she attends through the year.
The artist in April 2014 at one of many craft fairs she attends through the year.

Now this is where you come in.  I strongly encourage you to visit Mary Riesche Studios so that you can get to know a bit more about this artistic family member of mine, and while you’re at it, browse a sampling of her current inventory of pieces that are for sale.  She loves what she does so much, and is so committed to what she loves to do, she will even create a custom piece to fit your home, business, or organization’s needs.

Do yourself a favor, browse the Mary Riesche Studios website, and then contact the artist to discern how her talent can benefit your personal or commercial environment.

What is your calling?

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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.
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 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.

Same sex marriage: we don’t have to agree

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Fanaticism on both sides of gay-rights issue | Local News | The Seattle Times.  by Danny Westneat  Please read the attached article if you have not already done so.

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?
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.

Oso, Washington is us

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Malaysia Airlines flight 370 is us.

Vacaville People on Bridge
Painting by artist, Mary Riesche

What these two disasters and many like them have in common is that billions of us can say that they didn’t happen to us.  I live in a suburb of Seattle, approximately 60 miles south of Oso, Washington – the town that was buried by a landslide that killed at least twenty four people as of this writing.  This landslide didn’t physically happen to my town of Redmond, Washington, but it did happen to us.

The crash of Malaysia Airlines flight 370 took the lives of 239 people and affected thousands of people who lost one of the 239.  This crash appears to have happened over the Indian Ocean, many, many miles away from where you and I live, and most of us can say that we weren’t connected to any of those victims, but we would be wrong, because that crash happened to you and me as well.

I don’t take comfort in the fact that so many of the disasters that occur in the world haven’t personally or physically happened to me.  There is no distinct separation between me and those pointedly affected by the tragedy that has inserted itself into their lives;  no safety shield between my location, and theirs.  They are me, and I am them.

It is far too easy to sit comfortably at home and simply be grateful that such tragedies didn’t directly happen to me.  You know that saying, “There but for the grace of God go I.”  I think the intent of that statement is well-meaning but it must be said and felt purposefully so that we truly recognize that another misfortune, at another time, could be our own.  All of us are vulnerable, and we are all connected.  What happens elsewhere, happens to us.

The reason for this article is to express my hope that all of us, wherever and whomever we are, may more readily and clearly identify with all of humanity: the “them” or “they” to whom tragedies befall.

Empathy trumps distance, nationality, or circumstances.

 

Aging successfully: “think fast!” vs reflective contemplation

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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)
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)

DUI of Dementia

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Fatal crash restarts conversation on aging drivers | Local News | The Seattle Times.

When is it okay to drive while impaired?

NEVER.

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.
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.

In my article: Driving with dementia: the dangers of denial I offer a few suggestions on how to take the keys away – or give up ones own keys – before someone else gets hurt.

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.

A normal day, caregiving style

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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 have died from Alzheimer's in the past five years.
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.

Mice are our friends

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Allen Institute scientists try to decode mouse brain to understand our own | Local News | The Seattle Times.

DSC00021It’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.

Being prepared, the Alzheimer’s way

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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.

Caregiver Coaching Services

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via Desonier Caregiver Coaching Services.

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
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.

Advocacy for long-term care residents

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Alternate Title:  Give me a damn beer!

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.

Scc dining room & Don setting up ADilemma: 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.

No one is perfect

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A big issue for small minds | Opinion | The Seattle Times.

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."
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.

What you hope for is worth the wait

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Contemplating high hopes for the new year | Local News | The Seattle Times.

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.
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.

And so I keep on hoping.

Rocking the boat on your life’s voyage

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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.
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.

Medical tourism – Alzheimer’s style

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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.

An enlargeable relief map of Thailand
(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?

Driving Under the Influence of Dementia: Part 2

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STOP signI 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.

Where do you find peace?

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I’ve made a few edits to this article that I wrote in April of 2012. I’m re-blogging it because I know that the Holiday season may be joyful for the multitudes, but that is not always the case for everyone. I’m thinking of the reader who simply wishes this season would end and that a new year would begin…a new start that might herald in a smidgeon of much-needed peace. This one’s for you.

Irene Olson's avatarLiving: the ultimate team sport

Do you find peace within the circle of your family; or does meditation or prayer, an inspirational book, or music fill your soul?  Wherever the source – how do you keep that peace from slipping away?

Certainly when we’re exposed to sorrowful or earth-shattering news, any semblance of peace and calm seem to disappear, such as: acts of terrorism – both domestic and abroad; heartless school shootings; bigotry and hatred; and even devastating illness.  How many times has your armor been pierced by such circumstances?

Too many to count. So how do we find peace amongst the chaos?

We can find peace in many small ways – probably the easiest way to do so is to acknowledge the beauty that surrounds us.  It doesn’t matter whether you’re a creationist or an evolutionist, the beauty you see is the same.  It’s always refreshing when I walk through my local plant nursery,

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Life everlasting – is it a good thing?

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A recent NY Times article, On Dying After Your Time, poses many topics for discussion that must be addressed.  I knew before I even started to read the article that readers will have varying opinions on the matter of extending life beyond its appointed time to die.  These opinions will be based on ethics, biases, age of the reader, and religious beliefs, to be sure, but another factor that comes into play is the personal experience of each reader.

My father and my sister-in-law, both of whom have died from Alzheimer's in the past five years.
My father and my sister-in-law, both of whom have died from Alzheimer’s in the past five years.

If the reader has watched a loved one perilously balanced in limbo with a ravaged-by-disease body and/or mind, that reader might lean towards declaring that too much is being done to artificially prolong life.  In the past five years of my life, I have watched both my father and my sister-in-law die from Alzheimer’s.  Who they were at the end of their lives didn’t come close to resembling who they were pre-disease.  If the reader has had no experience with this aspect of life and death, that reader may feel more comfortable with the decision to throw every treatment possible at the patient with the goal of allowing that person to live as long as humanly – or scientifically – possible.

One of the issues presented in the NY Times article is the fact that as we live longer, there is an increase in the amount of chronic illnesses – a fact that certainly stands to reason.  “This rise in chronic illness should also give us pause about the idea, common to proponents of radical life extension, that we can slow aging in a way that leaves us in perfectly good health…The evolutionary theory of senescence [growing old; biological aging] can be stated as follows: while bodies are not designed to fail, neither are they designed for extended operation.”

The author of the NY Times article is an 83 year old man who closes out the piece by stating, “We are not, however, obliged to help the old become indefinitely older.  Indeed, our duty may be just the reverse: to let death have its day.”

If you haven’t yet formed an opinion on the matter of  life-extension at all costs – I encourage you to do so before it’s too late.  Life and death decisions are best made well in advance of the necessity of such decisions.

Olivia Wise – a 16 year old champion

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I just supported Tribute Page.  The attached link takes you to a page that spotlights a strong teenager who never let her brain cancer diagnosis bring her down.

Olivia Wise was diagnosed with cancer in 2012.  She and her parents knew that this diagnosis could be a death sentence and even though she fought against the cancer, she never gave in to its antics.

When this young woman received the news that there were no more treatments available to her, she recorded a cover of Katy Perry’s song, “Roar” and on the same day, in that same recording studio in September of this year, she sang a song that she wrote at the age of 11 called, “Simple Girl.”  Both songs are amazing in their import – especially if you consider the fact that Olivia had to struggle for each breath needed to complete each song.  Both songs can be purchased on ITunes at 99 cents each.

The goal of recording “Roar” was that she wanted her family and friends to be left with her voice, singing a song that depicted who she was.  She chose not to be identified as the cancer that ravaged her body.  Olivia wanted people to remember her as a tiger, a fighter, and a champion.  She wanted her loved ones to hear her roar long after she left this earth.

Olivia Wise died Monday, November 25, 2013.

Roar on, Olivia.

Disposable human beings

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Feds: DSHS neglected disabled to cut costs, may owe $16M | Local News | The Seattle Times.

You can’t open a newspaper these days without reading about budget cuts to Federal, State, and City services.  Memos are flying around these offices demanding across the board reductions or else!

The State of Washington figured out a way to save more than one million dollars and its Department of Social and Health Services is the brainchild of this impressive savings coup: deprive those with developmental disabilities the required services mandated by law that help them to function better in society.  The required services include physical and occupational therapy, personal-care training, speech therapy, guided behavioral norms, job skills, and recreation.

Two dozen developmentally disabled residents of Lakeland Village in Spokane, Washington – a state and federally funded long-term care facility – were denied these services for two years – most likely causing irreparable damage to these residents.  Let’s see – two dozen residents for two years – how many times was the law broken as a result?

41,231 times

How did they pull it off?  They moved a couple dozen residents from the intermediate-care facility of Lakeland Village into its nursing facility which is cheaper because that part of the facility does not have to provide the specialized services that the developmentally disabled residents need.  The relocated men and women received excellent medical care – most of which wasn’t called for – but they were deprived of all the quality-of-life services they needed most.  This violation of federal law means that the facility received federal funds in error – funds that were meant to cover legally mandated services at the facility.

When the investigation was launched and DSHS was told to provide documentation for the time period in question, there was little evidence that the specialized services had been provided.  In response, DSHS stated, “We didn’t make good documentation, or indeed, we didn’t provide some of them (documents).”  It is thought that the reason the paperwork wasn’t found, is that it doesn’t exist.

The State tried to cut its budget by $1 million by fraudulently withholding required care services.  The investigation continues while it is estimated that the federal government will penalize the State of Washington/the Department of Social and Health Services in the amount of $16 million.

English: Garbage bins in a row, during prepara...
(Photo credit: Wikipedia)

But you and I already know that the biggest price has already been paid by the disposed of human beings.

Baby Boomers remember 11/22/1963

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Please answer the following two questions:

  1. What were you doing when President John F. Kennedy was shot? (West Coast Pacific Time for that was 10:28 a.m.)
  2. What did you feel as a result of his assassination – either right then and there and/or the days and weeks following?
English: John F. Kennedy, photograph in the Ov...
John F. Kennedy in the Oval Office. (Photo credit: Wikipedia)

I was in my 5th grade classroom at St. Bede the Venerable elementary school in La Canada, California, when suddenly, the school’s public address system came on in our classroom, broadcasting what appeared to be an urgent radio message.  The Principal of the school gave no preamble to the radio broadcast, it simply became suddenly audible in our classroom.  When I was able to focus, as a fifth grader, on what was being said, I recall hearing “The President of the United States has been shot; John F. Kennedy was shot during a motorcade in Dallas, Texas and is not expected to live.”  (Or words to that effect.)

My teacher, Sister Mary Fahan told us kids to put our heads down on our desk and pray.  It seemed so startling to me – it was a heavy moment for which us fifth graders didn’t have 100% understanding, but the young boys and girls in my classroom felt the heaviness of the moment anyway.  Many of us were crying at the words coming forth over the speakers in our classroom – urgent and shocking words that stuttered from the radio announcer’s mouth.

School was dismissed and when my sister, Mary, and I were picked up by our mom, we climbed into her red and white 1957 Chevy Bel Air Nomad station wagon and joined our tears and fears with those of our mother’s.

Then for the remainder of November and into early December, it seemed as though the only story being covered on our little black and white (somewhat brown and white) television screen were the news updates and somber funereal activities inherent with the death of a President.

I recall that after I recovered from the initial shock of the incident, the impatience of a nine-year old took over due to the bombardment of constant television coverage that echoed around the walls of our house.  I yearned for normalcy, and for me that meant a return to TV episodes of Lassie reruns and new episodes of My Three Sons.  Perhaps what we experienced during that 1963 tragedy is not unlike what the children of the 9/11 era felt when their lives were invaded by the tragedy that marks their young lives.

Unfortunately, there seem to be enough horrific world events going on that each and every generation’s children will have memories about which they will reflect as they enter their older years; just as us Baby Boomers reflect on November 22, 1963 and all the other tragedies that have invaded our lives since then.