Tag Archives: Alzheimer’s disease

The New Yorker Magazine Talks About Dementia

The New Yorker Magazine Talks About Dementia.

I’m thrilled about the above Blog article that just happens to have been posted today, my 60th birthday!  There is a lot of substantive content in my fellow blogger’s posting: a link to a New Yorker Magazine article by Rebecca Mead, titled A Sense of an Ending; Phillip Toledano’s photographs of dementia; and, of course, the Blogger’s own contribution to the topic.  The aforementioned blogger, Kathie Ritchie, maintains an exceptional blogsite, http://www.mydementedmom.com.

I hope you’ll visit all of the above – and be better off as a result.

There’s an App for that!

A recent article by Jim Fitzgerald of the Associated Press focuses on a few electronic methods that might relieve some of the struggles experienced by caregivers who try to balance their frantic personal lives with the oftentimes emergent needs of their loved ones.  For the purposes of my article, I am only looking at the type of monitoring put in place by a family member to check on an elderly person’s well being; primarily a family member with Alzheimer’s or other dementia.

Beleaguered caregivers getting help from Apps is an eyeopening look at how Smartphone Apps, and other electronic devices, can provide some sort of relief to lessen the caregiver’s load.  Many of those who are long-distance caregivers, such as I was for my father several years ago, might benefit from being able to monitor their family member’s safety and well-being from a distance.

But does such monitoring invade the loved one’s privacy?  Of course it does; but I guess one could say that the benefits outweigh the disadvantages of such monitoring.  Or do they?  What comes to my mind is the elderly person’s gradual loss of independence – an aspect of life that many of us would equate to being a requirement for our own quality of life.  But I digress.

At best, I think electronic monitoring serves as a stop-gap or interim measure of caregiving before hands-on care is put into place.  The Pillbox App keeps a very tentative watch on whether or not a loved one – say a parent – has taken his medication properly.  If the parent does not have compromised executive function, it’s certainly easy to “fake it” so that the daughter can feel as though all is well ten miles away.  In reality, however, medication mismanagement might be taking place, carried out by the parent.

Elderly People - sign on Warwick Road, Olton

(Photo credit: ell brown)

The Alzheimer’s Association Comfort Zone program requires that a loved one wear a GPS device at all times so that family members can monitor their comings and goings throughout the day.  The system is of no benefit if the person doesn’t wear the pager; and if the person has dementia, there’s a strong likelihood of that happening.  I’m being the devil’s advocate here, simply pointing out that the system is only as good as the cooperation required to use it.  HOWEVER, and this is a demonstrative HOWEVER, it appears to be a very worthwhile system that provides numerous benefits.  Other than taking away ones right to privacy, it definitely serves as a safety net for when mom, dad, spouse, or other loved one, are heading into trouble.

I’m skeptical of Comfort Zone but I’m also its fan.  I’ve linked the Comfort Zone website above so that the reader can determine if such a system is worthwhile in his or her situation.  My skepticism comes about because I wish more attention and financing would be spent on a cure for Alzheimer’s and other dementia so that these current monitoring methods become a thing of the past.  A world without Alzheimer’s sounds just as desirous as a world without cancer, or MS, or Lou Gehrig’s disease, to name a few.  More disease control financing = more cures.

One final word: I’ve already experienced two family members with Alzheimer’s and all the caregiving migraine headaches associated with those experiences.  So please know that I’m a proponent of worthwhile practices that ease the caregiver’s burden.  Unfortunately, there is absolutely no fail safe method out there that will give caregivers true peace of mind.  Even placement in a long-term care facility is not a 100% guarantee that mom, dad, sis, or gramps will receive the best care possible.  I’m sorry to burst your bubble – but it’s true.

Do Not Ask Me To Remember

Walk in Their Shoes… Just for a Minute.  The attached article contains encouraging advice that caregivers worldwide need to read, and re-read, from time to time.

Those of us who have been caregivers to loved ones with Alzheimer’s or other dementia know very well the frustrations felt when we come to the realization that we’re not sufficiently equipped to handle that which this disease presents us.  We’re walking in caregiver shoes, fully incapable of walking in those of the person with dementia.  If we could, we would shriek at what we see and experience.

So we get frustrated – understandably so.  We raise our voices in anger – and feel guilty immediately thereafter.  We complain to others about the one we’re taking care of – because we crave to be heard and understood by someone!

English: PET scan of a human brain with Alzhei...

PET scan of a human brain with Alzheimer’s disease (Photo credit: Wikipedia)

Do not ask me to remember is a loaded statement and one which should give us pause.  We know the person with dementia is not able to remember the previous five seconds, so why do we ask them to remember where and when they were born?  Why do we think that repeating an answer LOUDLY AND WITH EMPHASIS will help the loved one remember this tenth time you’ve answered their same question?  Why do we think they will understand our logical explanations about circumstances when their ability to understand anything requiring organization of thought is a function forsaken long ago by the brain that they’ve been stuck with.

Because we’re human – and we want order out of chaos, and we want the one for whom we are providing care to finally “get it.”  And we want them to understand that this ain’t no cake walk for me so why aren’t you appreciating all that I do for you?

Because they don’t remember.

Wanted: new caregiving skill – mind reading.

Benjamin Button Effect: What Do You Do When Your Mom Cries Out Like a Baby?.

Being a mind reader would greatly benefit every parent of a newborn baby, and all caregivers of those with Alzheimer’s or other dementia.  The article attached above, by Blogger Kathy Ritchie, is a thoroughly relatable article that is raw in its presentation, but wreaking with truth because of that rawness.

Will Arnett at the premiere of Baby Mama in Ne...

(Photo credit: Wikipedia)

Reading Kathy Ritchie’s article I was instantly reminded of a line from the television series, Up All Night, wherein new parents, played by Will Arnett and Christina Applegate, fail miserably in their efforts to get their infant daughter Amy to fall asleep and stay asleep.  They try everything they can think of to address the baby’s distress: diaper changing, giving her a bottle, reading stories, making funny faces – you get the drill.  In desperation, Will Arnett finally says to his infant daughter, “We’re on your side!”

When you can’t force understanding on someone you’re taking care of, you wing it or you pull every trick out of every “How To” book written on this task of caregiving.   Yet more often than not, even with all the resources available at your fingertips, you make little headway in your attempts to meet the emergent needs your loved one presents to you.  Or what works one day (or hour) may not work the next day.  Why?  Because Alzheimer’s and other dementias are very unpredictable diseases; and people with dementia are unique individuals, equally as unpredictable.  There is no one formula for how to respond to any given situation.

As Kathy states in her article, “You have to work very hard to find the funny.”  I think many of us, given the choice, would settle for finding all the right answers and do without finding the funny – but the funny incidents are a great addition to ones day.

Caregivers of the world – you are not alone and if you need someone to tell you what a great job you’re doing, I’m telling you right now – YOU’RE DOING A GREAT JOB!!!

Your journey is filled with speed bumps and ruts in the road, but you continue on that path anyway because of your commitment to your loved ones.  After all, they had no choice in the matter when they ended up with Alzheimer’s or other dementia.  You’re both innocent victims.

Caregiving and the Challenges of Travel

Caregiving and the Challenges of Travel: It Can be Stressful for Both of You.

Read the above article if you’re not convinced that traveling with a loved one who has dementia can be challenging.  Or read it if you too have experienced this particular type of stress because you have already ventured into the travel hell that this Blogger describes.  I make that statement with no disrespect intended.  It doesn’t matter how much you love your co-traveler, it doesn’t matter how wonderful your destination – getting there is not without its mishaps and aggravations for both the caregiver, and the cognitively impaired traveler.

ZZZZZZZZZZZZZZZZ..........

(Photo credit: caribb)

Then there is the other side of the coin: imagine that you are a person with mid-stage Alzheimer’s or other dementia who is not accustomed to staying put – you actually wander constantly when you’re on the ground – and you’ve been put on an airplane by yourself and you have no concept of what is taking place.  You don’t have the capacity to understand that this metal tube in which you are sitting is a confined space and trying to “get home” is not an option.  If you can’t imagine that scenario read the attached article, Alzheimer’s “exit-seeking” behavior at 35,000 feet, an article I wrote shortly after returning from Bar Harbor, Maine in October 2012.

Being a caregiver or being cared for: there’s really no escape hatch.

In my post, President Obama says the “A” word: Alzheimer’s, I provided some Alzheimer’s statistics that focus on those who are predicted to be diagnosed with Alzheimer’s or other dementia in the years to come.  I also talked about caregiver statistics.

One statistic that really resonates with me is the following: a new caregiver is set into action every 33 seconds because someone will develop Alzheimer’s every 33 seconds.  In actuality, the stats are far greater than that.  Caregivers are “created” every second of the day because there are countless diseases requiring the assistance of someone just like you and me – an unpaid caregiver for a loved one.  I use the distinction of “unpaid” so as not to be confused with those who work as caregivers in the health care industry.

The following statement is attributed to former First Lady of the United States, Rosalynn Carter:

There are only four kinds of people in the world – those who have been caregivers,

those who are currently caregivers,

those who will be caregivers, and

those who will need caregivers.

I really don’t think there’s any way around it.  How about you?  Have you dodged the caregiver or being-cared-for bullet yet?

President Obama Says the “A” Word: Alzheimer’s

President Obama Says the “A” Word: Alzheimer’s.

Lest you think that Alzheimer’s has nothing to do with you, look at the following statistics provided by the Alzheimer’s Association:

  • By the year 2050, nearly one million new cases will be diagnosed each year – that’s one American developing Alzheimer’s every 33 seconds.  Taken further, that most likely equates to nearly one and a half million new family caregivers each year – considering that at least one family member will be involved in managing a loved one’s care;
  • Ten million Baby Boomers will get Alzheimer’s;
  • On average, 40% of a person’s years with Alzheimer’s are spent in the most severe stage of the disease;
  • The number of Americans that die each year from Alzheimer’s disease has risen 66% since the year 2000;
  • Alzheimer’s is the sixth-leading cause of death in the United States;
  • Today, there are no Alzheimer’s survivors – none.

Please take time to read the article I’ve attached above and consider the following: We are going to pay for Alzheimer’s one way or the other – now, or later.

This is a disease that will affect you, your children, your grandchildren, great-grandchildren, and beyond.  Burying our heads in the sand won’t solve anything.  Please consider donating to the Alzheimer’s Association as well as contacting your state’s congressional leaders asking for greater federal funding for Alzheimer’s research.  Why?  Because of this staggering statistic:

According to the National Institute of Health, the federal government currently spends much less money on Alzheimer’s research, prevention, and cure than on other conditions such as cancer, heart disease, and HIV.

  • $6 billion for cancer;
  • $4 billion for heart disease;
  • $3 billion for HIV/AIDS; but just
  • $480 million for Alzheimer’s disease.

I’m not comfortable with those numbers – are you?

Sometimes You Just Have to Laugh!

Sometimes You Just Have to Laugh!.

I think you’ll all agree that humor can be found in almost every situation in which we find ourselves.  Even the distressing disease of dementia has its lighter moments.  The article above, by fellow blogger Don Desonier, provides a moment he had with his wonderful wife Nancy.  I think many of you will be able to visualize the scenario that this writer so adeptly describes.

Here’s a humorous story from my caregiving time with my father who died from Alzheimer’s complications in October 2007.  On one of my visits to his assisted living facility in Oregon, he asked me to help him change his hearing aid batteries.  So happy to have something to do that would benefit my father, I jumped at the opportunity to help him hear better – thereby greatly enhancing our conversational abilities.

Behind the ear aid

Behind the ear aid (Photo credit: Wikipedia)

He pulled out his hearing aids and I pulled the dead batteries out and placed them on the coffee table.  I turned my back for a couple seconds and upon refocusing my attention, I saw that my father had put a dozen other batteries on the coffee table – MIXED IN with the two that no longer worked.  Had my father not put all the batteries in a pile I might have been able to readily discern the two recently removed batteries.  As it was, it took us forty-five minutes to test the batteries and as luck would have it, the used-up batteries were the last two we tested.

At least I got a laugh out of it – after the initial frustration – and dad seemed to get a kick out of the fact that I was giggling about the process.  And now more than five years later – I can still reflect on that experience with a smile on my face.

Dementia Transformation

Dementia Transformation.

The article above is from one of my favorite bloggers, Frangipani Singaporenicum.  Her journey as a caregiver involves her mother.  Her storytelling of what that involves is really quite genius.

English: Photograph of a Monarch Butterfly.

(Photo credit: Wikipedia)

This article addresses the question as to whether or not the person with dementia is the same person they were prior to onset of disease; and if they are not  …

then who are they?

Once you’ve read her article I believe you’ll have a clearer perception of what dementia takes away – and leaves behind – during the progression of the disease.

Don’t Go It Alone! The Importance of Caregiver Support

Don’t Go It Alone! The Importance of Caregiver Support.

The article above by a fellow blogger who recently lost his wife due to complications of dementia, echos my sentiments about the need to invite others to join you on your caregiving journey.  Walking the path alone is not only inadvisable, but in most instances, it’s impossible.  With so many unknowns waiting around the corner, every caregiver needs to enlist the help of those who can effectively support him or her, and as a result, provide much needed assistance to the one being cared for.

John F Kennedy Baseball Team

(Photo credit: Wikipedia)

I’m a firm believer of team support, as I stated in my article: Caregiving: The Ultimate Team Sport.  Another article, Solo Caregiving, provides encouraging ways in which to recruit team members when there are no family members on which to rely.

Taking care of yourself is not selfish.  Developing a team of caregiver-helpers goes a long way towards taking care of numero uno – YOU!

The Challenge and Burden of Sharing Difficult News

The Challenge and Burden of Sharing Difficult News.

When I think about the subject of having to tell someone some bad news, I think of the conversation:  “I’m not gonna tell them – YOU tell them!”  “No, I’m not gonna tell them – YOU tell them!”

No one wants to be the harbinger of bad news – especially news that will change peoples’ lives forever.  When friends and family need to hear the news that someone in the family has recently been diagnosed with Alzheimer’s or other dementia you wish it was as easy as the task you avoided at work – telling your cubical-mate that he has bad breath.  Nope – when lives are at stake – and quality of life issues are at stake – the ballgame changes – certainly not for the better.

In the attached article above, you’ll read the story about a family who had to make the agonizing decision about who to tell about a wife’s early dementia diagnosis – and when to tell them of the news.  What’s so beautiful about this husband’s telling of the story, is how much he took his wife’s feelings into account when determining the best conversational course to take.  The route he and his adult stepchildren chose was not one of denial, such as can be the case in some instances, rather, they faced the reality of this cosmic shift in their lives, and did what worked best for them and for their loved one.

Each circumstance is different – and those involved need to make appropriate decisions that fit the dynamics of their particular situation.  (It’s certainly not a one size fits all solution.)  And let’s face it – when someone starts out on this caregiving journey – it’s definitely a matter of on-the-job training.  In the above family – it appears to have been done quite well.

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

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?

Transitions in Dementia Caregiving.

Welcome to Catching Up to the Disease: Transitions in Dementia Caregiving.

Attention one and all!  There’s a new website out that will be addressing the challenges of being a caregiver.  The author/owner of this website, Don Desonier, is coming from the perspective of someone who very recently lost his spouse as a result of dementia complications.

Don’s five-year journey as a caregiver provided him with heart-rending experiences from which he garnered exceptional insight and wisdom.  I personally look forward to his article postings – so much so, that I became his first blog follower.  At the very least – why don’t you check out the website and visit from time to time.  I feel confident that you’ll walk away feeling renewed with the realization that you’re not alone, and somehow or another – there’s a way through this difficult journey that you’re on.

I commend this Blogger, and I love him.  Don is my brother and he was an extraordinary caregiver to his wife of almost twenty-five years.

Living with Early-Onset Alzheimer’s disease.

In Washington State, there are currently 150,000 people diagnosed with Alzheimer’s Disease.  In the rest of the Nation, more than 5 million have Alzheimer’s disease.  That number will jump to 16 million by the year 2050.  Most of us envision an elderly person with some sort of dementia.  We might even expect it to occur in those 85 or older.  Listen to me Baby Boomers – young and not-so-young – the number of people diagnosed before the age of 65 – known as early-onset Alzheimer’s – is more common than you think.  In the United States alone, those with early-onset disease currently number 200,000.

That number decreased by one when my exceptional sister-in-law died on July 4, 2012 at the age of 69.  Just about the time that Baby Boomers should be anxiously making their final retirement plans – such as was the case with my brother and his wife – they are instead dealing with the challenges of managing a disease for which there is no cure.

Sixty-four year old Lon Cole, a resident of Puyallup, Washington, is one of the 200,000.  The local NBC affiliate, King5 in Seattle, Washington, ran a touching story about this gentleman.  I hope you will take the time to look at this news article: Alive and Thankful: Living with early-onset Alzheimer’s.  Those who have managed, or are currently managing, the care of a loved one with early-onset disease, will be touched by this family’s story.

Capturing a moment, or two, with your loved one.

If For a Moment in Time…..

Michael Jackson in 1984

(Photo credit: Wikipedia)

The attached article, written by a fellow blogger, needs no introduction other than for me to tell you that Margo beautifully describes a perfect evening with her hubby who was diagnosed with Alzheimer’s several years ago.