What Alzheimer's Disease Has Taught Me (so far)

I've been in long term health care for 15 years now.  I've worked with and cared for numerous individuals and families who have been touched by the heartbreaking disease known as Alzheimer's.   There have even been a few of my own relatives who have lived with AD--few aunts and uncles.   Then, a couple years ago, my dad was diagnosed with Alzheimer's-type dementia.

My knowledge base has grown and grown over the years I've worked in geriatric care.   More than most anyone, I am well trained and equipped on what to expect and how to handle the myriad of twists and turns that accompany AD.   Still, as anyone will tell you, when it's *your* close family member who is part of the Alzheimer's equation, all bets are off.   It's impossible not to be emotionally invested in whatever happens on this journey.

Granted, I'm a pretty easy-going person.  I try to look for the positive and the lessons that can be found in any situation, no matter how hard, sad or devastating.  (I get this trait from my dad, I believe).  And while my dad is in the early stages of AD at the moment, I realize things can change quickly and that there is no more taking things for granted where he is concerned.

The Alzheimer's Association has a wonderful online support forum filled with tons of people who either are caring for someone with AD or who are dealing with the disease in some way, shape or form.   I  recently was inspired to add to a great thread where forum posters list what they've learned from Alzheimer's Disease.

Here are just a few of the lessons I've learned so far:

• Many people with AD can still keep their sense of humor through most of the disease process. Looking for the humor in those not-so-great moments can be a life saver!

• People will forget what you say and what you do for them, but they will never forget how you made them feel.

• Hugs and kisses go a long way, especially when you don't know what to say.

• We're a society that prides ourselves on our "intellect" and we are trained to live in our heads. Perhaps AD is here in part to teach us to live in and with our hearts more.

I wish this disease did not exist, but I continue to remain open to what it has to teach on an individual and collective level.   The lessons are always there, you just have to be open to finding them.

ElderNews You Can Use (4-24-10)

ElderNews is a semi-weekly round up of links around the web that touch on topics of aging, death/dying and health care.

• Cognitive stimulation therapy helping dementia patients in the UK.    In the facility where I work, the recreation department has a daily structured program in place that is very similar to this concept for our more severely cognitively impaired residents.  I can tell you the program  does seem to aid in reducing agitation and some other dementia-related behaviors.  It would be interesting to gauge as to whether or not CST has any effects on improving our resident's overall cognitive capacity.


• How the Class Act is seeking to set up a Class Program to assist caregivers in managing their loved one's care at home.  While every bit of financial assistance is a wonderful thing, I would suggest a minimum cash benefit of $100 a day for those with more skilled care needs.   It already costs around $300 per day to reside in a long term care facility, so that would still be a huge savings.


• I love the insights, tips and glimpses into the world of Alzheimer's Speaks.  This blog is a beautiful narrative depicting the love a daughter has for her mother who has AD and resides in a nursing facility.  Her post about the "surprises" one can encounter when loving and caring for an Alzheimer's individual is truly touching.


• Only about 30% of adults create an Advance Directive.  Doctor's need to step it up and encourage more of their patient's to name health care agents and outline their health care wishes before a catastrophic medical event occurs.   More importantly, Advance Directives should be drawn up before an elderly loved one is no longer able to articulate his or her wishes.


• The American Geriatric Society Foundation for Health & Aging lists tips to ensure caregivers find good long term care placement for their loved ones.

Kevorkian Back In Spotlight With Upcoming HBO Movie

This weekend, HBO's Saturday night movie is "You Don't Know Jack", a biopic about infamous physician Jack Kevorkian (aka "Dr. Death").   Kevorkian of course,  made history in the 1990's for assisting the suicides of hundreds of patients.

I'm reading some pretty good reviews about the movie so far.  Supposedly, this film is not meant to present an argument for or against right-to-die causes, but rather to provide insight into the complexity of character behind a man often maligned in the media.  With Al Pacino in the starring role, I suspect he will bring quite an interesting perspective to Kevorkian's persona.

Are you interested in seeing this movie?  What do you think about Jack Kevorkian?  Was he an evil, "Death Doctor" who just liked to play God?  Or might he have been a caring doctor  who simply viewed death as a way to relieve the pain for those whose bodies were dying anyway?

Social Work Wonder Woman

I like this idea on Nechakogal's blog asking readers to describe their social work environment via a cartoon-ish character parody.   Now, I can't really identify with the three options given in the poll:

1. Cinderella Social Worker- this is the worker who essentially is caught up in cleaning up after her wicked (and wealthy?) clients.  She pushes paper more than she actually engages the people she works with.  She's a slave to the grind and buried in her work.  Hopefully, a magical Prince will arrive and save her from her thankless tasks and buy her lots and lots of new shoes.


2. The Firefighter- this social worker is running around putting out fires all the live long day.  Ok, I can kinda relate to this one.  There certainly are some days where it feels like all I'm doing is deflecting one hit after another and getting close to nothing actually accomplished.  Everything is an urgent matter.


3. Papa Smurf-- This social worker is community-driven and approaches his or her work with idealistic compassion and seeks to unify rather than divide.  Papa is the social worker I think many of us *want* to emulate, but often get sidetracked because we're busy being firefighters and thinking about new shoes when we're buried in our paperwork.  (How's that for a nice tie-in?) :D

So, I participated in the poll but naturally, had to choose the "other" option.  When it comes down to it,  none of the above truly embody what it is I do or who I sometimes feel like in my practice.   I definitely can see a little of the firefighter tendency in me as a social worker, but it's not a consistent feeling.   The cartoon/fictional character I believe best embodies the social worker I am and the environment I exist within is.....



You got it.

I'm Wonder Woman.

I'm not trying to be cocky or silly, but after truly thinking about this (and consulting the google gods for a little Super Hero back-story research), I think Wonder Woman is a near perfect fit to describe my Social Work Persona and the general themes that develop in my work.   Per Wikipedia:

Wonder Woman is an Amazon (based on the Amazons of Greek mythology) and was created by Marston as a "distinctly feminist role model whose mission was to bring the Amazon ideals of love, peace, and sexual equality to a world torn by the hatred of men.'" Her powers include super-speed, super-stamina, super-agility. She is highly proficient in hand-to-hand combat and in the art of tactical warfare. She also possesses an animal-like cunning and a natural rapport with animals, which has in the past been presented as an actual ability to communicate with the animal kingdom. She uses her Lasso of Truth (which forces those bound by it to tell the truth), a pair of indestructible bracelets, and an invisible airplane.

Ok, so I am no Amazon woman and I don't wear corsets and thigh high red boots to work.  I also don't have one of those newfangled invisible airplanes, (however, my salary review is coming up) but, I dig the "feminist role model" and super-speed/super stamina powers.  Hell, I'm a damn speedy and efficient social worker!  I can get a lot accomplished and still be a client advocate.  Those traits definitely represent me on a lot of levels.  And I have this uncanny ability which warrants people (clients and non-clients)  to divulge their life secrets and on occasion, I hear some pretty heavy confessions.  It's as though I have a symbolic Lasso Of Truth force that emanates from me.  I kid you not.  Also, I have the ability to communicate with my cats.  We talk to each other all the time.

So there it is.  I am Wonder Woman, Social Worker.  Hear me roar!

Is Death More Taboo Than Sex?

It amazes me to think how far Western society has come in terms of medical advancement and technology.  Sometimes I question whether so much "advancement" is necessarily a good thing, but overall, there are a great deal of positives that come with our evolution in health and medical care.

Yet, for all the progress we have made, we're often unable to face the one very real and unavoidable fact that no medical advancement can prevent indefinitely.

We can't escape death and dying.  I don't care who you are or what you do, the end result for each and every one of us is the exact same thing.

Why then, are so many afraid to talk  or even think about the subject of death and dying?   This palliative care nurse believes that death has become more of a taboo topic than sex.   I am inclined to agree.

Is it that we think by avoiding the subject, we'll never have to deal with it?  If we run from death, we can escape it?  Deep down inside, we are all connected to one another because of this simple, democratizing truth:  we will all die someday.

(I'm full of sunshine, rainbows, and puppies today, aren't I?) :P

If we can start to recognize the ways that death binds us to all humanity, maybe we can overlook some of those trivial frustrations and annoyances that keep us from really appreciating the various people who make their way into our daily rounds.   More importantly, if we break the taboo grounds that seem to underlie conversations about aging, death and dying, we can live in a world that's just a little more peaceful.

Acceptance instead of struggling.  Embracing rather than avoiding.  Looking toward the inevitable (and unknown) with a sense of tranquility as opposed to distress.

An Identity Beyond The Dementia Diagnosis

Its a common malady in health care settings to think of a patient or client in terms of their disease or diagnosis.  Come to think of it, we all have a tendency to view people within a categorical lens; it's what we're taught to do.

Sometimes it seems like people would rather be diagnosed with any other disease than Alzheimer's or dementia.  It is a devastating condition to live with, no doubt.   It can often be even more crushing for the family of the dementia patient.  One of the hardest things in the world to witness is your loved one fading away...and with Alzheimer's/dementia, there are typically years of mental and cognitive decline that precede bodily or physical deterioration.   The person *looks* the same and *seems* the same on the surface, but their personality, language ability and memories are being torn away from them.   That's a terrifying and sad thing to see happen in the people who mean a lot to us.

Still, a dementia diagnosis need not be the end of the world.

Just because your loved one can't recall what they did five minutes earlier, doesn't mean they don't enjoy continuing to share and engage in their relationships.  Dementia can be an isolating disease, whether the individual lives in a long term care facility or in the community.   In the earlier stages, the person often is able to recognize that something is not right within them.   They notice some of the mental and cognitive  changes taking place.  Many people become embarrassed or ashamed by what is happening to them, and therefore begin to pull away from their family, friends,  and activities.  They don't want anyone to perceive that they have a memory problem and they certainly don't want to be identified solely by this degenerative and mind-robbing condition.

If you have a loved one with Alzheimer's Disease or dementia,  one of the best things you can do for them is continue to include them in your life.   It doesn't matter if you are repeating the same news over and over to them, or if they tell you the same stories from their childhood as though its the first time they shared it with you.    People with dementia just want to have someone they can talk with.   It means so much to be able to share in other people's lives and keeping connected to the world outside sometimes helps the person with dementia to retain many  of their cognitive skills for a longer time than if they remained isolated.

And keep in mind: dementia may be a part of the person's medical diagnosis, but it is not ALL of what makes them who they are and always were to you.

ElderNews You Can Use

ElderNews is a semi-weekly round up of links around the web that touch on topics of aging, death/dying and health care.

• Few are prepared for the heavy financial burdens of long term care. 


• Tips for planning elder care strategies and initiating discussions on end of life issues.  Remember, these conversations are best held while your loved on is still relatively healthy and able to communicate their needs and wishes to you.


• Forget Me Not Club works together to make lasting memories from ceramics class participants with dementia.


• 31 year old woman with rare form of  Alzheimer's Disease gives birth.