Tag Archives: Alzheimer’s Association

Medical tourism – Alzheimer’s style

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?

Putting a face on Alzheimer’s

One Son, Many Voices – An Elegant Video About Alzheimer’s & Dementia.

The attached video, just 3 minutes long, showcases how very personal Alzheimer’s and other dementia are to those involved.  The toll on the patient – measurable, as you will see in this Shapiro family video.

The toll on the family – especially those caring for a member with the disease – beyond measure.  Imagine taking care of someone who has lost his or her faculties, who can no longer express themselves verbally, and who has become a shell of his former self.  Can you imagine it?

Imagine you must, because I sincerely believe that the only way people will stand up and take notice and do something about this disease, is to wear the mantle of a loved one with the disease, and/or the mantle of the beleaguered caregiver.

If you can help monetarily, please do so: www.alz.org.

If you can help within your community to relieve the stress of a caregiver with whom you are acquainted, that support is equally as needed and valuable.

Whatever you do, please do something to make a difference.

Alzheimer’s disease is a murderer

and I’m as mad as hell about the millions of crimes that it has gotten away with.

Alzheimer’s and other dementias are unfair to the one diagnosed and to all those involved in that person’s life.  The unfairness unfolds with the worst day of that person’s life – diagnosis of a disease for which there is no cure – therefore it is always fatal – and it is a disease where little progress has been made in treatment options.

Let me introduce you to two fabulous people who are no longer with us because this disease killed them.  Yes, Alzheimer’s murdered them.

My hero - my father: 1918 - 2007

My hero – my father: 1918 – 2007

My father, Don, was born in 1918 in Toronto, Canada.  He married my mother, Patricia, and they had three children.  They became U.S. citizens in the late 1940′s/early 1950′s.  My father was an extremely distinguished, courteous, humorous, and dedicated family man.  He received his Alzheimer’s diagnosis on June 3rd, 2005 and I was there by telephone conference, having attended his initial neurological evaluation a couple weeks earlier.  He died at approximately 12:10 a.m. on October 13th, 2007.

Nancy, an adoring daughter-in-law to my father, seated in front of her.

Nancy, an adoring daughter-in-law to my father, seated in front of her.

My sister-in-law, Nancy, was diagnosed with mixed dementia just a few months after my father died.  Nancy was born in 1942 in Quincy, Massachusetts.  She graduated from UCLA with a degree in flute performance and used those skills in many venues throughout her life.  Nancy had three children from her first marriage – children of which she was very proud.  Nancy was an extremely talented interior designer, opening her own design business in 1987 – the same year that she married my brother, Don.  Nancy died from mixed dementia, that also included Alzheimer’s, at approximately 11:05 a.m. on July 4th, 2012.  Just two and a half months later, my brother and sister-in-law would have celebrated their 25th wedding anniversary.

Saturday, September 21st, 2013 is World Alzheimer’s Day.  One in every three seniors dies with Alzheimer’s or other dementia.  If you do not die from Alzheimer’s, you die with it.   From Alzheimer’s Association 2013 Facts and Figures.

Won’t you consider making a monetary donation in the hopes of capturing this murderer?

U.S. website for the Alzheimer’s Association: www.alz.org

International website: www.alz.co.uk

Other countries have their own dedicated websites as well.  Please find those sites through any search engine you would normally use, and let’s slap the cuffs on this criminal disease.

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.

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?

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.

Ambiguous Loss – The experience of caregiver spouses.

Caregivers Of Spouses with Dementia Report Sadness, Loneliness, Less Enjoyment | Alzheimer\’s Reading Room.

The article above reflects what is offered by Pauline Boss in her book Ambiguous Loss.  I highly recommend the above Alzheimer’s Reading Room article as well as Ms. Boss’s book for any spouse who is taking care of their wife/husband at home or if your spouse is already living in a dementia care unit.

The author, Pauline Boss, explains it this way – When a loved one dies, we mourn our loss.  We take comfort in the rituals that mark the passing, and we turn to those around us for support.  That doesn’t happen when a loved one is still alive -  but lost nonetheless.  And this period of loss may go on for years prior to the spouse’s final departure through death.

One of the statements that Ms. Boss introduces is that “it is o.k. to love a shell.”  Anyone who is married to someone with dementia knows that, in essence, a shell is what their spouse becomes with advanced dementia.  But if the “surviving spouse” is able to draw on the memories of their marriage – they find themselves able to love their spouse regardless of the disease.  But the memories remembered, are no longer shared memories; joint reminiscing does not occur.  And your wedding anniversary passes without any possible acknowledgement by your spouse.  And although that’s just one of the burdens that this long period of loss contains, it’s a difficult burden to bear.

Caregiving is a difficult, 24/7  task.  I honor you on your journey, and I hope you find comfort and direction in the above resources, as well as the resources that the Alzheimer’s Association provides.

Getting lost in a “Peek-a-Boo” world.

A fellow Blogger, Frangipani Singaporenicum, submitted an excellent article, “Mom is Back,” about the hurdles experienced when her mother traveled by airplane back home after a visit with one of her daughters.  Frangipani’s siblings weren’t fully aware of the breadth of their mother’s disease so they thought that the mother would be in good hands at the airport because they had arranged for an airport escort to get the mother to her airplane destination.

Unfortunately, what could go wrong did go wrong.  “Frangipani’s” mother has mixed dementia, Alzheimer’s and vascular dementia, and found herself in unfamiliar surroundings when she became separated from the airport employee – a stranger in the mother’s eyes – who was supposed to assist her.  Getting lost in an unfamiliar environment is something that comes quite naturally to those with any type of dementia.   And as often happens when a person is lost, we try to get un-lost.  That attempt brought her mother to another airline terminal where a kind gentleman, noticing her distress, found the assistance she needed to get on the correct plane at the right time.

Those of us who have children – and please bear with me while I make this comparison – know how easily a child can wander away from our purview.  We make a quarter turn at the grocery store to get a box of cereal off the top shelf and “POOF!” our child is nowhere to be found.  I’m very familiar with this feeling because it happened to me many years ago when my adventurous daughter wandered away – causing me near cardiac arrest – and was subsequently prevented from exiting the grocery store by a Good Samaritan grandmother who knew better than to let my daughter run out into the parking lot.  “But I only turned away for a second!”  That’s all it takes.

So too can a person with dementia wander away because of something that attracted him; or more likely, with your back to him, he didn’t recognize you any more and walked away to try to find you.  “But how can I keep my eye on him at all times?”  You just have to.

SOME TIPS OF THE TRADE. 

SVG restroom symbols

(Photo credit: Wikipedia)

Public restroom challenges.  If you or your loved one needs to use the bathroom, find one of the family bathrooms that now exist in many public places so that your environment is controlled, and everyone’s needs are met.  Don’t think for a second that you can say to your husband, “George, you stay here while I run into the ladies’ room.  I’ll just be a minute.”  Be prepared to call security when you come out of the ladies’ restroom because in George’s mind, you disappeared, and the time frame of a minute means absolutely nothing to him.  And forget about sending your husband into the mens’ room by himself to meet his potty needs.  You’ll be waiting, and waiting, and waiting, and he just a) may not do his business; and b) may not come out on his own.  If no family bathrooms are available, stand at the entrance to the public restroom and announce yourself: “Woman entering with husband who needs assistance!”  You’ll find that those within will cover up what needs covering and not call security on you.

Medic Alert

Medic Alert (Photo credit: Nikita Kashner)

Medic-Alert jewelry.  The Alzheimer’s Association strongly recommends purchasing a Medic-Alert/Safe Return device which provides 24/7 emergency response service.  At least if your loved one gets lost, they will be reunited with you sooner.  This service is available in 50 countries, and in 140 languages.  The service speaks for itself so please check the link attached to research the many benefits of this membership service that, quite frankly, brings priceless peace of mind and provides a healthy dose of safety for your loved one.

Now they see you – now they don’t.  The examples cited above would not be complete if I didn’t add a personal experience from my days of being my father’s primary long-distance caregiver.  My dad lived in a Continuing Care Retirement Community (CCRC) in Southern Oregon.  When first diagnosed with Alzheimer’s he was very functional and remained in the assisted living apartment on campus that he had shared with his wife prior to her death in January 2007.

I stayed at a nearby hotel when I visited my father but spent most of the day with him on outings and/or spending time with him in his one-bedroom, one-bathroom apartment.  At one point during an apartment visit, I announced to him that I was slipping into the bathroom, 10-feet away, and would be just a minute or two.

I was glad to have locked the bathroom door because partway during my “sit” dad was frantically jiggling the doorknob from the bedroom side of the door shouting, “Irene!  Where are you?!  Are you o.k.?  What’s going on?!!”  I was less understanding at the time and returned my own crazed shout of “Dad!!!  Leave me be!  I’m just going to the bathroom!!!”  Knowing what I know now, I would have exited the bathroom and apologized for frightening him, and made every attempt to make him feel safe again.  As Oprah Winfrey often says, “We do better when we know better.”

This unintended  “peek-a-boo” event proved to me that my father did not have an understanding of the passing of time, but more importantly, that if he couldn’t see me, I wasn’t there.  Back to the example of children, but this time, you’re the child.

You’re at play in your bedroom, having just left your mommy gleefully singing in the kitchen while she did the dishes.  Your dolls are lined up on your bed, you’re engaging them in discussion, and all of a sudden you notice that mommy isn’t singing any more.  You toddle out to the kitchen, and mommy isn’t where you left her!!!  “Mommy!  Where are you?!  Mommy – I’m scared!!!  Help me Mommy!!!!!”   Your mother steps out of the adjoined laundry room and calms you down – “Irene, I was just five feet away; I didn’t go anywhere, I’m right here!”  You run into your mommy’s arms and feel safe again.

Alzheimer’s and other dementia are very unpredictable diseases.  What can be predicted, however, is that the onus will always rest on us to compensate for our loved one’s challenges.  As I’ve mentioned in previous articles addressing dementia, we have the ability to adjust to the diseased person’s reality; not the other way around.  It’s hard work for us, but it’s an impossible task for them.

How to Break the News When It’s Alzheimer’s

How to Break the News When It’s Alzheimer’s.

It’s so unfortunate that Alzheimer’s, and other dementia, have become the new condition to avoid and/or not acknowledge.  A dementia diagnosis is SO difficult for everyone – including the one with the disease.  I think this article is very well done and provides a perspective of which many need to be aware.  Dismissing, or using euphemisms for this disease e.g., my wife has some memory problems – won’t make it go away.  Helping others to understand – not necessarily accept – this diagnosis is a very worthwhile endeavor.

Communication Tips from Individuals with Memory Loss Alzheimers Reading Room

Communication Tips from Individuals with Memory Loss Alzheimers Reading Room.

It’s not often that we have the privilege of hearing from someone who has dementia, providing us who don’t have dementia, with some caregiving tips.  Please take the time to listen to this person’s voice.

Alzheimer\’s Reading Room: \

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!

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.

Communicating in Alzheimer\’s World | Alzheimer\’s Reading Room

Communicating in Alzheimer\’s World | Alzheimer\’s Reading Room.

One of the most frequent stresses I hear from those caring for a loved one with Alzheimer’s or other dementia is having to REPEATEDLY answer questions for which an answer has been given – numerous times.  This article provides some tips on communicating with someone who is literally not on the same wavelength as you.

Caregivers: learning from our mistakes.

“Once bitten, twice shy.”  The Chinese and Japanese proverb has a variant:  “One year bitten by a snake, for three years afraid of a grass rope.”

It helps to be a bit crazy now and then.

How does one who is as imperfect as myself apply this Proverb without writing an article that goes on and on into perpetuity?  All of us can think of circumstances in which we fail to learn by experience and continue doing the same stupid/inadvisable thing over and over again expecting different results.  As I said, my life is rife with examples, but this article centers around caregiving – especially as it applies to caring for someone with Alzheimer’s or other dementia.  CAVEAT: I would never write on something about which I had not experienced.  I’ve been there.  I’ve done that.  I’ve paid for my mistakes.

I’m so tired of my spouse/father/mother asking me the same question over and over again and supplying her with the same answer over and over again!

Anyone with a loved one who has any type of dementia has lived in this unending vicious cycle.  We think that if we just answer the question one more time she’ll remember and not ask the question again.  Or we think that if we just spoke louder – or slower – she would certainly remember and life would be infinitely improved.  Not happening.  Answer the question once, and then move on to another topic.  Change the subject; redirect your loved one by doing something that will distract her; or simply don’t respond at all.  What ever you do, don’t aggravate the situation by reminding her that you’ve already answered that question numerous times so why don’t you stop already!!!???  Take a deep breath and remember: your spouse isn’t the one asking questions over and over again and frustrating you beyond all measure – the disease is asking the questions.  I know – intellectually you understand that concept, but your eyes see and hear your spouse pestering you for an answer over, and over again, so it’s very difficult to get beyond the emotion of the situation.

My husband keeps thinking we’ve visited France, Italy, and Spain – even expounding on our shared adventures – but we’ve never stepped out of Omaha, Nebraska our entire lives!

Why not go along with the fantasy?  If you’re not comfortable with that idea, let me ask you this: each time you corrected your husband, how did that work for you?  Your husband keeps insisting that you’ve been there; you keep insisting that you haven’t.  You both end up frustrated and your husband feels ashamed that you’ve called him out on the well-known fact – by you alone that is – that neither of you have ever traveled farther than the local State Fair.  Why not have fun with it instead?  Ask him to expound on the experiences he remembers.  Editorialize a bit and reminisce about all those memorable times together.  The Alzheimer’s Association has a motto:  “If you don’t insist – they can’t resist.”  As the person who does not have dementia, it’s far easier for you to adjust to his reality than it is for him to jump into yours.

When my father has an upcoming doctor’s appointment, I start reminding him about it a week before so that he’s not surprised and will be prepared for the appointment.  It’s so frustrating, however, when he keeps asking, “When are we leaving for my appointment?  I thought you said I had a doctor’s appointment.  Did you cancel it?  WHY did you cancel it?”


There you go – doing the same thing over and over again, expecting different results.  In this scenario, you’re the only one needing advance notice of the upcoming appointment.  Your father doesn’t have the ability to understand the concept of elapsed time so providing him with his day’s/week’s/month’s itinerary serves no purpose.  But I write the appointment on his calendar in big bold letters – why doesn’t he see that it’ll be at least two weeks before that scheduled date?!  Again – he doesn’t have the ability to a) understand the concept of passing time; and b) it’s very likely he doesn’t understand what you’ve written, regardless of how bold or big the letters.

Caregivers: what I’ve shared is just the tip of the iceberg of what you might be experiencing.  Please share the ways in which you’ve learned by your own caregiving mistakes.  I need your knowledge, and my hope is that others can benefit from your experiences as well.

Life can turn on a dime.

If ever there is an example of how life can turn on a dime, it’s Congresswoman Gabrielle Giffords’ tragic experience.  January 8, 2012 marks one year since Ms. Giffords was shot in the head while meeting with her constituents in Tucson, Arizona.

The bullet traveled 1000 feet per second into her brain and not only did she survive, even her neurosurgeons termed her recovery a miracle.  Is Ms. Giffords back to 100%?  No.  Will she be?  There is a strong hope that she will.  As her husband said to Diane Sawyer when asked if he’s holding out too much hope: “You can’t have too much hope!  That’s not practical!”  In her ABC special on 20/20 chronicling Congressman Giffords’ and her husband, Astronaut Mark Kelly’s journey, Diane Sawyer characterized their endeavors in this manner:

 The courage & love you bring when the life you live, is not the life you planned.

Life turns on a dime in many ways: in relationships; in difficult financial times; and in sickness and in health, to name just a few.

Some of you reading this Blog are in the midst of a life trauma that you certainly didn’t plan, and from which you wish you were released.  What challenge do you face?  Did you see it coming?

One story of life’s changes. I volunteer as a Facilitator for an Alzheimer’s Association caregiver support group.  Every member of our group has a loved one with some sort of dementia diagnosis.  Some are in the early stages, some are in the middle stages, and three in particular recently experienced the end stage.

RRRING!  A telephone rings in the middle of the night and life changes for caregivers gearing up for the Holidays with their family.

In the wink of an eye, life as they knew it took a sharp turn.  It’s the Holiday season and suddenly one set of caregivers hires in-home hospice care for their parent and another caregiver rides in an ambulance with her spouse to a local hospice center because of a terminal change in health.   Within days both sets of caregivers arrange memorial services for which they hadn’t planned at this stage of their loved one’s life.

BANG!  Six lives are lost, and Gabrielle Giffords’ and Mark Kelly’s lives change forever.

Congresswoman Giffords loved spending time with her constituents.  The night before she was shot, she took a long bike ride with a friend and was eager for the next day to begin.  A week later she and her husband were to undergo in vitro fertilization so they could start planning the birth of their first child together.  And those attending this gathering, both staff and general citizenry, hoped for a successful and enjoyable experience.  The bottom line is that you can’t plan for what you can’t see coming.

Oftentimes when we hear of tragedies such as those mentioned above, we naively say to ourselves, “Those are the types of things that happen to other people; not us.”  Well, the truth of the matter is, those types of things happen to people, and that’s us.

Congresswoman Giffords’ neurosurgeons stated that they don’t know where in the brain one finds charm, optimism, humor or charisma.  Certainly no where in the brain can one find sufficient prescience that allows us to see what’s coming around the corner.

No matter how hard we try; no matter how careful we are; life turns on a dime.  And sometimes, the life we live becomes the life we did not plan.

I received inspiration for this article from the caregiver heroes with whom I am acquainted, and from Gabrielle Giffords and Mark Kelly in their book: Gabby: A Story of Courage and Hope.