Tag Archives: Alzheimer’s

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.

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?

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?

Mom and her flying purse!

Mom and her flying purse! #EndALZ.

This Blogger, Richard Kenny, really has a way with words as he describes the challenges – and sometimes the joys – of his caregiving role as a son to his mother who has Alzheimer’s and to his father who struggles to be the spouse of a wife with Alzheimer’s.

Very much worth the read – and I don’t just mean this one article.  Many of Richard Kenny’s observations and musings so clearly reflect his day-t0-day frustrations as well as his somewhat new found ability to adapt to every unforeseen circumstance.

When the Mind Says Goodbye – Alzheimer’s Reading Room.

When the Mind Says Goodbye is a thoroughly touching mini-video (less than 5 minutes long with beautiful music accompaniment) chronicling a married couple’s journey as best friends in early childhood, all the way through their marriage -  currently a more than 87 year-long relationship.

This couple, George and Adriana Cuevas, show us how a lack of words does not have to limit ones ability to relate to, and comfort, a loved one.  I hope you will take the time to observe this loving couple as they walk through the hallways of Adriana’s memory care unit, and as they sit side-by-side with only touch and eye contact as a communicator.

It seems to work for them.  How lovely that their marriage commitment lives on, even when the mind has already said goodbye.

Alzheimer’s “exit-seeking” behavior at 35,000 feet.

At a certain stage during the course of Alzheimer’s or other dementia, a person can exhibit exit-seeking behavior.  It is believed that the person exhibiting this behavior is actually trying to get home, or back to a familiar place, or even seeking a feeling of comfort rather than simply trying to escape from their current location.

This “exiting” can take place just about anywhere, even at the person’s own home – resulting in a dangerous scenario where a wandering vulnerable person could easily fall into any number of  horrific situations because of their inability to get back to the safety of their home (be it a personal residence or a long-term care facility.)  Exiting behavior also takes place in public places such as grocery stores or shopping malls, movie theaters, airports, and yes, even airplanes at 35,000 feet above the ground.  This latter scenario happened on a recent flight I took from Dulles International Airport (DC area) to Seattle International Airport (Seattle, Washington.)

Just a half hour into our five-plus hour flight, a female passenger of approximately 75 years of age became very agitated during our ascent before the fasten seat belt sign was switched off and climbed over the passengers in her row, carry-on in hand, screaming all the way to the back of the plane from Row 34.  I was seated in Row 35.  “Wow, she must really have to use the bathroom!” I thought.  A flight attendant tried to get the passenger resituated in her seat to no avail.  Complicating matters was the fact that the passenger was from another geographical continent and not only did she not speak or understand English, it was determined that other passengers who had flown with her from that same continent (not any relation or connection to her) also could not understand a word that she said.  In essence, she was speaking gibberish.  That was the first sign to myself and the flight attendants, that a) this woman was flying alone; b) she was in severe distress; and c) she most likely had some sort of dementia and was trying to exit her environment.  Not an easy task, nor one any of the United Airline employees were about to allow.

Eventually, passengers’ inconvenience took a back seat to this passenger’s distress.  Not everyone was as forgiving, but those of us in the immediate vicinity of the drama taking place sensed this was no ordinary situation.  Even the laudable efforts of three on-duty flight attendants, one off-duty flight attendant, and one of the pilots, were not successful.  Two hours into this frantic flight, my husband and I started looking at the United Airlines in-flight magazine map to discern which major airport we might be diverted to – that’s how aggressive the entire episode was becoming.  Then a Good Samaritan, one of the previously mentioned passengers who had made the 20-hour journey from another continent with this woman, offered to sit with the distressed passenger in her row because it became evident that she thought this familiar-looking man was her son and as such, he provided a small amount of comfort to her.  Additionally, he physically prevented her from getting out of her row by pretending to be asleep with his head against the back of the seat in front of him.

Who in their right mind would allow this woman to navigate the difficult – at best – task of getting from one country to another, unaccompanied, and without medical attention?  Her son, that’s who.  Evidently he was waiting at the airport in Seattle to pick her up at baggage claim.  Now I know that I am only aware of a fraction of the story, but the fact remains that this vulnerable woman should not have been subjected to this all-day long task of flying from one country to another; changing planes at who knows how many different airports; all the while not understanding anything that was going on around her.  It is not too far-fetched to conclude that this passenger might even have had another aggravating medical condition such as a urinary tract infection (UTI), a condition that so often causes extreme behaviors in those whose health is already compromised.  Of this I am certain – during our five and a half hour flight, this distressed woman never used the bathroom, did not drink any liquids, and did not eat any food.  Was that the case throughout her day’s long travel experience?  Was she experiencing the painful effects of being dehydrated?  The bottom line is that the outcome of all of the known, and unknown, factors was a disaster of unfortunate magnitude.

End of the story?  As us relieved-to-be-on-the-ground-in-Seattle-passengers filed off the 757 jet, the off-duty flight attendant went to this woman’s aid and apparently took on the task of getting her to the waiting family member.  The rest of us never saw her in baggage claim, but it’s a fair assumption that the passenger received some sort of medical intervention at the arriving gate and was eventually reunited with her son.  The best case scenario that I have come up with is that the son relocated his mother to the Seattle area to get her the type of medical/neurological attention that she so desperately needs, with the goal of moving her into a memory care unit nearby.  That’s the story I’m holding onto in the hopes that an eventual happy ending will greatly benefit this distressed woman.

Unconscionable Crime: Stealing from a family member with dementia.

Are there worse crimes?  Of course.  Sexual and physical abuse come to mind.  But in this article the focus is financial exploitation.

English: Seattle Post-Intelligencer logo

(Photo credit: Wikipedia)

Here’s a headline, ripped from an August 26, 2012 Seattle Post Intelligencer (PI) article: “Son, wife fleeced dementia-stricken mom.”  Here’s the good news – the son, Ivan Ljunghammar, and his wife, Deborah Jean, have been charged with felony first-degree theft.   Here’s the bad news – this pair allegedly stole close to $513,000 dollars from Ivan’s 82-year old mother, facilitated by him being awarded control over his mother’s finances in 2007.

The victim and her husband (deceased) were very careful throughout their lives to make sure they had sufficient funds for when they truly would need them.  They did an amazing job and as it turned out, those funds were needed.  I guess her son and daughter-in-law figured they needed the money more.  Added to that atrocity, the daughter-in-law knowingly hired a convicted felon to care for her mother-in-law.  Who does that?  The morally corrupt – that’s who.  But I digress.

A desire for the parents’ estate compromises morality.

Although it’s true that strangers rob from vulnerable adults, family members do it more often than you can – or would care to – know.  It’s the vulnerable adult with dementia who is most often targeted by strangers and family alike, and the family members who “legally” have access to mom and dad’s funds are the most hideous criminals.  This family member becomes the Power of Attorney over finances and/or care needs for their mom and then abuse that “Power” by assuring mom that all is well and that she need not worry herself, all the while moving money away from mom’s accounts into their own.

Some financial exploitation is more subtle.

Moving mom or dad out of their current assisted living facility, in which the parents initially had carefully chosen to live, to a facility that is less expensive so that more money remains after mom and dad die.  Holding back the daily care a compromised adult may need.  Providing a bare minimum of personal belongings and clothing for their loved one – again, for the same reason.  Do I sound harsh and judgmental?  Gosh, I hope so.  My work with the older population for the past 12 years has created a jaded view of how some family members respond to the needs of their parents.  Thank goodness the percentage of good and loving family is greater than that of the bad and corrupt – but that does little towards softening the effects of a vulnerable adult’s emptied bank account when they need it most.

It’s unfortunate that media headlines are the primary thing that exposes elder fraud.

I know I personally don’t write about elder fraud enough in this Blog.  My article, Financial fraud against the elderly: it’s a family affair, does draw attention to some of the examples I’ve addressed in this Blog entry, and I guess the more sensational occurrences of elder fraud will make this crime more visible.  But I think the bottom line is that I want the impossible.  I want our elders to be respected, not exploited, and I really want family members to grow a conscience.

Free Caregiver Resource eBook: 8/26/12 Only!

Free Caregiver Resource eBook: 8/26/12 Only!.

I should have posted this earlier than today, but I hope anyone needing this valuable resource – and it’s FREE today Sunday, August 26th!!!!! – will be able to take advantage of it.  I know I will.

Thank you, Kelli, for being generous with this offering.

 

 

Alzheimer’s: Laughter and Forgetting

Alzheimer’s: Laughter and Forgetting.

The attached article, from the magazine, Seattle Met, is a stellar example of a therapy that is not medicinal or chemical, nonetheless, it’s a therapy that works.  Imagine that – and without drugs???

  • Frye Art Museum, Seattle, Washington

    Frye Art Museum, Seattle, WA (Photo credit: Wikipedia)

    Viewing art at a museum and painting to express oneself afterwards. What kind of wackadoodle therapy is that?

It is a very successful therapy – that’s what!  Here: Now is an arts enrichment program developed in partnership with the Frye Museum, Elderwise, and the regional  Alzheimer’s Association, in the greater Seattle, Washington area.

The above article focuses primarily on the younger onset Alzheimer’s disease scenario, highlighting the experiences of Cathie Cannon and her partner, Sharon Monaghan, the latter who was diagnosed with this life-changing disease.    As the author of the article, Ann Hedreen, states

Art – looking at it, talking about, making it – is powerful medicine, one that gives Sharon a way, however fleeting, to live peacefully in the moment, no remembering required.  Even in its very name, Here: Now is about living in the moment.

So I’m going to let you discover the healing power of art, as told by those who can explain it far better than I ever could: Cathie and her partner, Sharon.

Driving and Dementia: is it a safe combination?

Driving and Dementia.

The linked article, above, from a fellow Blogger is very much worth the read as it’s just one of many stories occurring around the world when loved ones – whether because of dementia or just advancing age – face the decision of whether or not to put down the keys to a vehicle that can cause untold damage to the driver, and all those in his or her path.

In my article, Driving with Dementia: the dangers of denial, linked here, I address this dilemma that many families encounter.  I hope both of these articles provide you with helpful information so that you are able to make informed decisions centered around the dangers of driving with an age or disease-related impairment.

Monday, August 13th was a beautiful day.

Why?  Because at least 150 people attended my sister-in-law’s memorial service, held after she passed from complications associated with Alzheimer’s disease.

I know that the count of 150 is nothing compared to a stadium full of football, baseball, or soccer fans.  But this 150 people showed up on Monday, the beginning of most people’s work-week, to honor my brother and his stepchildren, and memorialize a woman who impacted their world greatly.

How the day unfolded.  Individual after individual arrived: some driving south from British Columbia, Canada, one person even flying in from Toronto, Canada, and numerous people driving north from California and Oregon state.  At first it looked like those who set up the venue with numerous chairs had overcompensated in their attendance projections.  That was not to be the case.  By 2 pm, the scheduled start of the memorial service, additional chairs had to be set up.   By 2:15 pm, some of us, most notably my brother, were sweating – not just because it was very hot on that particular Seattle, Washington day, but because the Officiant for the service had not arrived – and never did.  But that’s not important.

Time for Plan B.  I joined my brother outside just after 2 pm and I suggested that since the Officiant had not yet arrived, it was probably time to figure out Plan B.  All the immediate family members sprung into action and the parts that would have been attended to by the Officiant were superbly handled by other family members.  Even my brother – who had NOT planned on saying a word during the structured part of the service – walked to the front of the room and spoke beautifully about his wife’s journey to finally reach “home.”

Home is not just a structure with four walls.  Quite a few times during my sister-in-law’s illness, she told my brother that she just wanted to go home.  Now for those who aren’t familiar with Alzheimer’s or other dementia, oftentimes “home” means comfort, freedom, peace.  That was the case with my brother’s spouse.  She died on the American holiday, July 4th, also known as Independence Day.  That day was her Independence Day, when she could finally flee to comfort, freedom, and peace, with a body – and mind – untethered by any restrictions.

Many blessings to my sister-in-law, my wonderful brother/spouse caregiver, Don, and all of the surviving family members.  Monday, August 13th was truly a Celebration of Life and Liberty.

Conversation with a Mentor.

Conversation with a Mentor.

This article from a fellow blogger who happens to live in Singapore is very timely in that it discusses how a caregiver might sort out their thoughts when caring for a loved one with Alzheimer’s or other dementia.

I really enjoy this blogger’s way of writing about her journey – she’s a caregiver for her mother.

I hope you enjoy it too!

Reminiscence and reminiscence therapy

Reminiscence and reminiscence therapy.

I found the attached article very interesting and promising.  Anyone who has been a family caregiver, or a professional caregiver, knows the seemingly insurmountable struggle to engage with someone who has Alzheimer’s or other dementia.

My work path in life always includes those with dementia so I will definitely look into this therapy.  But let’s face it – as us Baby Boomers move onward into our future, we’re already looking for ways in which to brighten our memories when what we’re searching for may be on the tip of our tongue, but it refuses to jump off!

Is Alzheimer’s a death sentence?

My Thoughts Right Now, May 11 Alzheimers Reading Room.

The article attached above is from a blog diary kept by Dotty’s son, Bob DeMarco, from the inception of Dotty’s diagnosis of Alzheimer’s to the end, which is very near almost nine years later.

My Dad and I on a picnic, Spring 2005.

Dementia care is a very high station in life.  That’s what Bob DeMarco believes, and so do I.  Dementia caregiving is one of the most difficult challenges anyone can face and not everyone excels at that task.  Bob has indeed excelled and there are many of you for which the same can be said.  I sincerely believe if you can get through that journey, you can handle just about anything life can throw at you.  My caregiving journey with my father ended in 2007, so I am speaking from experience, not just with an educated opinion.

Is Alzheimer’s an automatic death sentence?  Many in the medical community, including the Alzheimer’s Association, will declare that indeed it is a death sentence.  I think one of the reasons why so many believe that to be the case is that at this point, there is no cure.  There are no thoroughly effective medications or treatments that cure it or stop it in its tracks.  A person gets an infection?  A regimen of antibiotics is prescribed and poof – the infection goes away.  Someone is diagnosed with a particular cancer – a treatment regimen is prescribed and as a result many cancer patients become former cancer patients.  Not so with Alzheimer’s or other dementia.

There’s no such thing as a “former Alzheimer’s patient.”  At this point, the only former Alzheimer’s patients are those who have passed on.  If I interpret correctly what Bob DeMarco said in the above attached article I think he may be saying that if you start your Alzheimer’s/dementia journey convinced that the disease is a death sentence,those involved, especially the caregiver, might not work nearly hard enough to make the patient’s remaining life one that can be called a dignified, quality life.

“Surviving” a disease takes on an entirely new meaning.  It sounds as though Bob set out to make sure that his mother, Dotty, had a quality of life that she was able to live for an extended period of time.  For that reason he can confidently say the following: “We did survive.  We are survivors.”

Well done Bob and Dotty.  You are beautiful examples of how to be a survivor when the odds are stacked up against you.

More on music therapy for dementia.

More on music for dementia.

In my article, Music therapy: a key to unlocking the diseased brain, I introduced an extraordinary excerpt from the documentary, Alive Inside.  The article linked above provides part of an interview with Dan Cohen, the social worker featured in Alive Inside from a National Public Radio (NPR) special feature on the same subject.  Dan Cohen also offers tips for using this therapy on your own.  Keep in mind, although he oftentimes refers to the elderly having dementia, we know that dementia afflicts those as young as their 40′s.  I hope you benefit from this article as much as I have.