Alzheimer’s and dementia

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.

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Baby steps towards Alzheimer’s diagnosis

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Amyloid Scanning Protocols Fail to Get the Nod from CMS.

I like the above article and every single article that mentions some sort of steps moving towards diagnosis and treatment, even steps that are stunted right out of the block.

Stillness gets us no where.  Although limited, at least this article discusses some progress towards shutting down Alzheimer’s and other dementias.  During a time where very little good news is forthcoming relating to this disease, I’ll take anything – thank you very much.

The Gift that Keeps on Giving – until it’s no longer needed.

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Rev. Dale Susan Edmonds answers your questions about caregiving.

The above link, from a December 2012 NBC News report, addresses the conversations that many of us – well, many of you anyway – still need to have with your parents.  (My mother died in 1994, my father in 2007 – those conversations have long since taken place.)  In many respects, my brother and sister and I were fortunate because in our family, the topic of sickness and death seemed no different from discussing that night’s dinner menu – perhaps even easier.  That’s just how it was in our household growing up.  But I’m aware that universally, that is not the case.

In my article Cost of Dying: planning for a good death, from advance directive to talking with your family, I’ve attached an exceptional article about a few people’s experiences discussing how their loved ones want to die.  By now I may have lost some of you, but bear with me.  There’s a reason why I’ve chosen to address this topic.

presenting
(Photo credit: only alice)

GIFTS.  Who doesn’t like receiving gifts?  Most of us get a kick out of being handed a package with a fully wrapped surprise within and told to “open it!”  “What, for me?”  Yes – for you.  Perhaps the gift is something we didn’t expect, or we’ve sufficiently hinted our exact wishes and finally someone gifted us with that long sought after item.  Fun, isn’t it?  Someone cared enough to gift you with something you’ve always wanted or you receive something that you didn’t know you wanted, but it turns out, you do!!!

THE GIFT THAT KEEPS ON GIVING.  A few years ago, I succeeded in convincing my wonderful hubby that we needed to put together our “last wishes” which of course includes a Will, but more importantly, an Advanced Health Care Directive.  My husband is one of those who isn’t exactly comfortable sitting around the dinner table – or any table for that matter – talking about death.  I get that – I really do.  So I couched this discussion by talking about what a gift my parents, and his parents, gave their families by specifically outlining what to do when it came time to do something.

When your loved one is heading towards the great beyond, it’s comforting to already have his or her wishes on paper and ready to execute – no pun intended.  I’ll use my father as an example.  My father died at the age of 89 on October 13, 2007.  Official cause of death was prostate cancer but advanced Alzheimer’s was a huge factor in his death.  There is no way my father would have a) survived cancer surgery; and b) even wanted cancer surgery at that stage of his dying.  His Advanced Health Care Directive very clearly stated his wishes and us three siblings had copies of that document and respectfully went along with his wishes.  Dad saved us the stress of making an extremely difficult guesstimate of what he would have wanted in the midst of that situation.  His dying was already an emotional experience so I can’t imagine having some sort of discussion about when to stop treating his illnesses.

The legal document, drafted years earlier, was drafted for this specific time.  Even if dad had been conscious – and he was not – his dementia would have prevented him from making a well-informed decision.  If ever there was a time when dad’s gift was ready to be presented – this was it.  That gift allowed us to spend our last hours with him simply loving him; singing to him; and telling him how grateful we were to have him as our dad.  Beautiful.

You don’t have to wait until you are 50 years or older to put your wishes in print.  Old people aren’t the only ones dying who require some sort of affirmative decision-making.  Someone in their thirties could be in a horrific vehicle accident and end up lingering on the precipice of death.  A forty-year old person could have a stroke and be on that same precipice.  It’s never too early to do something about your exit from this world as we know it.  You can always change your mind later – you decide that you do, or do not, want hydration, so you revise the document.  That’s the beauty of word processing – it’s changeable, and once you get that revised version documented by witnesses, you’re good to go!  Literally.

If you choose to use an attorney, you can go through the local Bar Association for referrals or you can attempt the same outcome by doing it yourself.  Many office supply stores have boiler plate legal documents you can readily purchase – but be certain to purchase the forms that contain the required legal verbiage for your state or territory.  Additionally, organizations such as Compassion and Choices provides forms that you can download from their website, even a form that has a Dementia Provision.  Who woulda thunk?  Not me.

The Holidays may be over, but the season of gift-giving is not.  Won’t you consider giving your loved ones one more gift this year?

ADI World Alzheimer Report 2012 Caregiver Survey a Must DO | Alzheimer\’s Reading Room

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ADI World Alzheimer Report 2012 Caregiver Survey a Must DO | Alzheimer\’s Reading Room.

I know that all of us want to see an end to Alzheimer’s disease.  Many of you have Alzheimer’s or other dementia, and even more of you are helping to take care of your loved ones.

Rarely has there been an opportunity to provide input in such an international forum.  This survey can be completed around the world.  It is not just intended for one country.  The primary topic of the attached survey revolves around the stigma attached to dementia.  You will be asked questions about how your loved one is treated, how you are treated as the caregiver for your loved one, etc. Your responses are entirely anonymous.  You will not be asked to provide your name, nor a physical address, nor your e-mail address.

I hope you’ll consider filling out the online survey.  It was VERY quick, so you need not spend a lot of time on the survey.

The results of this survey will appear on the Alzheimer’s Reading Room website on World Alzheimer’s Day – Sept. 21, 2012.

Alzheimer\’s Reading Room: Learning How to Use Alzheimer\’s World to Your Advantage

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Alzheimer\’s Reading Room: Learning How to Use Alzheimer\’s World to Your Advantage.  Please check out this link, as well as those that I offer in my commentary below.

The above link provides a great article about a woman caregiver who found success using the confusion of Alzheimer’s to her advantage.  (For background information on the people referred to in that link please look at  an article about a talking parrot who in essence was the Assistant Caregiver for Dotty, a delightful woman with Alzheimer’s.)

The Alzheimer’s Reading Room article posted at the top of this page  mirrors my own thoughts as provided in my article: Honesty is NOT always the best policy.  If you’ve never been faced with the communication struggles associated with caring for someone with Alzheimer’s or other dementia then you may be unnerved by the approaches offered in my article and the article linked at the top of this page.  If you have been faced with those struggles, however, you’ll probably support any communication methods that make your caregiving job easier.  The caregiver benefits, and the one being cared for receives the outcome of those benefits.

BOTTOM LINE: It’s all about entering the world of the person with Alzheimer’s, rather than trying to force them into yours.

Alzheimer\’s Reading Room: \

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Alzheimer\’s Reading Room: \.

This article is a delight to read.  It describes one family member’s perception of having been “chosen” to be the caregiver for his grandmother.  As a result of that choice, he developed a product that can be, and is, used widely in assisted living and dementia care units.  What a terrific outcome for everyone!

Blogger Awards for You and Me!

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Thank you “Let’s Talk About Family” fellow-blogger for nominating me for the Versatile Blogger Award.  That’s the kind of feedback I like!  More importantly, everyone should check out her Blog because her insights into the ups, and downs, of caring for parents is very insightful and well worth following.

I have been so blessed by the input I receive from the many Blogs that I follow.  I’m going to use this opportunity to make some nominations as well! (I could list many, many more, but to begin with at least, I’ll list just a few that always stand out to me.)  First of all the steps that the nominees need to take to award others who are worthy of singling out:

  1. Thank the person who nominated you for an award;
  2. Copy & paste the award logos in your blog, as well as in the sections devoted to your nominations, below;
  3. Be certain to link the person who nominated you for an award; in my case, you’ll see that I’ve linked “Let’s Talk About Family” when I thanked her for nominating me;
  4. Nominate your own choices for awards;
  5. Place links to their Blogsites so that others can view their fine work;
  6. Say a few things about yourself so that others understand a bit more as to where you’re coming from – and where you’re going:
  • My first name is Irene and I live in the Seattle, Washington area.
  • I’m a Baby Boomer who loves to share knowledge about the challenges, and delights, of being in this age group.
  • My working background of the past 20 years includes being a paralegal in law firms as well as for corporations; an Executive Assistant and Office Manager for a senior housing company; a Business Manager in an assisted living/dementia care facility; an Alzheimer’s Association caregiver support group facilitator; and a certified long-term care (LTC) ombudsman for the county in which I live.
  • I became a LTC ombudsman in 2008, thereby leaving the senior housing industry, because in my mind one can never do enough for the vulnerable adults who live in long-term care residential facilities.  In order to assure that vulnerable residents experience a dignified existence and a high quality of life, I had to switch sides and become their advocate.
  • I will always try to write something about which I am familiar and that I have also experienced.  I’m not an expert, but my goal is to always provide input that I hope will prove valuable to others.
  • My mother died in 1994 and from 2004 thru 2007  I was the primary long-distance caregiver for my father who lived in an assisted living community’s dementia care unit.

Now onto the award nominations!

Versatile Blogger Awards:

Day by Day with the Big Terrible A (Alzheimer’s, of course.)  This blog is very reader-friendly.  This blogger is a wife who is taking care of her husband.  Her mini-entries very clearly reflect the struggles she, her husband, and her family face but she also makes room to celebrate the little victories that sometimes are hidden within the caregiving struggle.  I think all of us can find comfort in this woman’s efforts, and her ability to describe those efforts deserve 5 Stars!!!

My Simple C.com.  This blog is an online community that seeks to connect professional caregivers with family caregivers.  The resources and suggestions are quite good and are provided without the intent of selling anything.  Virginia Lynn Rudder works for a company called Simple C, but she clearly has a goal of providing information in an easy to read, comprehensive, and supportive manner.

Elder Advocates.  Lark E. Kirkwood experienced something that no one should ever have to experience.  A guardianship was put in place limiting access to her father who was suffering from Alzheimer’s disease, and who has subsequently passed on.  Please visit her site because she provides many valuable resources relating to a prevailing problem for vulnerable adults: elder abuse & fraud.

BEAUTIFUL BLOGGER AWARD.

Flickr Comments by FrizzText.  This Blogger really knows how to take a photo and knows how to find them so that we can take a break in our very busy days and simply enjoy his view on our world.  Please make a point of stopping by and you’ll be representing one of the more than 100 countries that partake of his Blog site.