But Dad Seems Fine to Me!

I recently spoke with the child of a client who said her mother still has days when she seems “completely normal—no serious memory deficits, no confusion, no agitation and, she recognized me and my children.

One might say that I’m learning about dementia from the inside out.  I would say that the unkindest part of dementia is its inconsistency. Some days, still, I will speak with my father on the phone, hang up the phone and turn to my partner. He knows that look, one of pleasant bewilderment. What follows is a comment such as this: “Wow. Dad sounded great tonight!  He was his old self! He remembered that we visited him last week, thanked us for the jacket with the enormous white “Y” on it that we gave him for his birthday last week, gave me an update on his sister in Idaho and carried on a conversation as though everything is just fine!”

I know this can happen. In fact, I’ve had conversations about this very phenomenon many times with colleagues who remind me that this is just another cruel aspect of dementia. What’s awful is that I’m fooled every time. I want so badly to believe that things are just OK that I’m ready to believe things are all back to normal. The universe has somehow reverted to pre-Alzheimer’s diagnosis day and, well, we have our dad back.

These moments of clarity are brief, sadly. It isn’t long before I have a conversation with my sister or mother. A few statements about what’s actually going on throws me back to the unfortunate reality: Dad’s going to have good days and bad days. But over time, it’s only going to get worse.

There is something about the mind that wants so badly to sneak quietly into the rooms of denial. It’s so seductive to just believe that we all had it wrong—the neurologist, the neurpsychologist, the family physician—wrong, wrong, wrong.

I would suggest that it is this very built-in “forgetter” that allows us to survive the darker, more traumatic moments of our life. We are quick to forget the pain, sorrow, loss and grief. In fact, many of us have become unusually adept at the forgetting process. Who wouldn’t want to believe the fantasy and imagine that we can have the past back.

I went back to a blog called “Dementia Blues.” The last line assured me that extended moments of clarity, of normal-seeming behavior will simply “come and go.” From "Dementia Blues."

Rather than let myself feel the despair, I just remind myself, and ask those around me to do the same, to enjoy the moments we have when dad seems to have miraculously reverted to his former self but to not allow ourselves to become so thrilled that we have to relive the surprise and deep sorrow of the reality: It comes and goes.

Finding Help: Adult Protective Services

As we discuss how to help an older adult in need, it is important to be aware of the agencies already in place to help you. A few descriptions of those agencies should be helpful. I’ve become aware misconceptions regarding the role of certain governmental agencies--particularly Adult Protective Services (APS).

Adult Protective Services

Briefly stated, the purpose of Adult Protective Services is to assist vulnerable and elder adults in need of protection to prevent or discontinue abuse, neglect, or exploitation until that condition no longer requires intervention.

I was recently asked if APS is similar to Child Protective Services, another important agency set up to protect children. The answer is “Yes and No.” The important distinction to remember is that there is not always a perpetrator of neglect or abuse in the lives of older adults. In fact, the situation I described in the last post is a perfect example of older adults in need. One might assume they are being neglected, but by whom? In a case of child endangerment there is always a responsible party whether that b a parent, foster parent or other guardian. In the case we are discussing here, there is no defined “perpetrator.”

In this case and others like it, Adult Protective Services is the right agency to contact. The beliefs listed below help us understand that the role of APS is really not to lay blame, but to offer services in any case where an older adult is at serious risk.

Guiding Principles or Beliefs

• Services shall be consistent, if at all possible, with the accustomed lifestyle of the vulnerable adult.
• The vulnerable adult has the right to self-determination.
• All services provided are voluntary unless court ordered.
• Services provided should be least restrictive in nature and community based when possible.
• Family members and others who are concerned for the vulnerable adult should be allowed and encouraged to take responsibility. The State will accept responsibility only when no other resource is available.

I want to point out an essential issue here, which is the concept of “self-determination.” When an agency representative investigates a situation where abuse or neglect of an older adult is suspected, they cannot violate or disrupt the person’s “accustomed lifestyle.”

Defining "Self Determination" 

I would like to refer you to a post that addresses this point titled, Intervening in the Decision Making of Your Aging Parent.  In that post, Anthony Morrison parses this dilemma and provides a step-by-step process that emphasizes the least restrictive intervention.

A Great Question!

So here’s where it gets tricky. When does the risk of self harm trump self-determination? Great question! And it’s one that APS agency workers confront regularly.  As you might imagine, there is no simple answer to this question.  Every case is different and in every case the worker must be willing to consider many complex issues including answering:

• What constitutes “Immediate and Real Danger?”
• Who is being harmed by the decisions made by the older adult?
• At what point should a Public Guardian be considered?
  

Now What?
 
I have spoken with many professionals regarding this issue and received a number of suggestions. The most common one is very practical. If you believe and older adult is in danger of self-harm, neglect or a victim of abuse, call Adult Protective Services, ask to speak with a professional agency representative such as a social worker and then discuss the situation.  If you choose, the call can be made anonymously. By calling and speaking with someone well versed in the nuances of the law and the agency’s role, you can ask general or specific questions without ever mentioning the older adult’s name. 

Making this call will often provide you with enough information to then decide your next step.  After this initial call, you may wish to then seek counsel from others in the neighborhood, clergy or even a distant relative that you know cannot be present.

I welcome comments on this post.  Remember that I am speaking generally about a topic that can be extremely complex.  Please feel free to submit questions you have about this topic or about a more specific situation or dilemma.

            Grow old with me!  The best is yet to be.  ~Robert Browning

Worried Neighbors, Solitary Elders, Good Samaritans

I’m so glad to be back at the blogger’s desk and writing about an important issue.  It first came up when a woman approached me at a local street fair here in Salt Lake City. She came to the office a few weeks later with a particularly difficult and perplexing situation—one that has taken me some time to research.

Gratefully, I work with several mental health professionals who represent many decades of experience working with older adults. I went to our weekly meeting and was offered many helpful responses that I would like to share over the next few posts.

The Situation

The woman who came to our office said she lived in a neighborhood where she knew of a woman living alone. The older woman was eighty years old and very isolated from the normal social engagements that occupy many of us in middle age.  This woman was clearly in desperate need of help.  I’ll call her Mrs. Smith.

It was reported that Mrs. Smith has lived alone for many years in a home she apparently owns.  She has no family in the area—in fact, it appears that her only living family member is a brother who lives in a distant country. It is not clear whether this brother has contact with his sister here in the States—but if he does, it appears that he is unaware of his sister’s situation and needs.

Mrs. Smith is described as very suspicious—maybe even paranoid. She refuses to allow visitors into her home except in the direst emergency.  She has fallen ill on several occasions following incidents where she has ingested spoiled food.  The neighbors have made many efforts to help this woman but they have been rebuffed.  Only when Mrs. Smith has been too ill to respond to her door have the neighbors felt obliged to enter the home and have Mrs. Smith transported to the nearest emergency room.  Once Mrs. Smith is well again, she returns to her home and to her reclusive life.

As I described this situation with professionals who work with older adults I learned that this situation is sadly not uncommon.  The neighbors’ efforts to help and resulting frustration is also familiar.  The questions nagging at those in the neighborhood include:

•    When does our concern for our neighbor’s safety override her right to privacy and self-determination?
•    If we know this woman is at risk of self-harm, what state agencies, if any, can provide us with counsel and help? 
•    Is this a case for Adult Protective Services? 
•    Does our county Aging Services have outreach workers that can help us help her? 

These are the questions I have pondered over the last few weeks.  They are questions that are actually being asked by many thoughtful, concerned neighbors as well as by family members who may be estranged from an aging parent, aunt or uncle or even a more distant relative with limited resources.
I will attempt to offer some answers to these questions in the next few blog posts. I’m keenly aware that as I attempt to answer these questions, more questions will be posed than I have answers to.  I encourage your comments and suggestions throughout this process.

My next post: A Few Definitions

Pondering Anxiety, Fear, Illness and the Bondage of Self

What do we call the voice that converses with us throughout the day? The one that tells us all is not well as we lie down to sleep or the one that wakes us before the iPod alarm goes off playing that same tired song by Dido, the one that nags: All is not well and All is not well!  

I had this conversation on my way to and from Whole Foods just now where I bought a curried turkey sandwich and low fat chips (I wouldn't suggest the latter):

--What's that pulling in your gut about?

--Nothing. Leave it alone. It goes away. 

--Not this time.  Is it caffeine? Lack of sleep? The truth? 

--Not now. Not now. 

--Fair enough but it will catch up with you sooner or later. 

This is the point I take out my new iPhone and play with it in the checkout line.  Still then, the question raised goes something like this: Technology creates and shushes my worry in those empty places and spaces where we wait in line alone.

Which brings me to this: is it fear or is it anxiety?  If I call it anxiety I am forced to consider the pathology of a diagnosis—something that rattles a therapist’s cage.  If I call it fear, I must consider the boldness of the word--like a bracing cup of espresso on a February morning on my way to the gero-psych unit at McLean Hospital in Belmont, MA--the bold and not-so-beautiful reality of broken seniors, my elders falling apart just beyond my reach.

  

I heard fear through the phone last night as I listened to what one of my sister’s was saying.  She called to hear the words that would ground her before she moved back into the sector of someone else’s violent world.

So, this is the problem we must grapple with when we care for someone else.  Our problem—or at least my problem, perhaps, is when do I dive into the torrent and when do I stand back, tie the rope to a nearby tree and toss the other end toward the one drowning? 

What I know is that the problem exists in real time and place, not only in the abstract. It’s there, nestled up against the old brain that I share with every human and every mammal.  That old brain that doesn’t distinguish between actual and imagined danger.

So, do we stand back on the edge of a disease moving slowly but surely in my father's new brain?  A disease that wreaks havoc with its plaques and tangles? Do we stand back from those affected by the violence of it or jump in with both feet? 

All of it is accompanied by the fear that the precious moments that connect me to him may disappear as his memory fades.

Now that I sit quietly for the first time since morning, I ask the universe for one merciful memory.  I say:

Take me back to the night when we arrived home after driving through two hundred miles in darkness—coming back from Idaho or California, the heap of us kids lying in the ‘way-back’ of the Buena Vista station wagon where I pretend to stay asleep (how does one pretend to breathe the way a sleeping child breathes?).  Still, I’m sure he will be the gentle father that remembers I’m there, picks me up, gathers the sweaty blanket about me, swings my whole, trusting body out of the stuffy car into the night that smells of scrub oak and black walnut, through the doors and down the stairs—

And then the phone rings, again, and I go back to face the hot chants of the old brain that insists it’s too late for trust, too late for hope and reminds me that soon, if not already, he’ll not remember.

More on Death Panels (because laughter is the best medicine!)

My sister who lives in North Carolina sent me a link to an article by Joel Stein that appears here at Time Magazine online. It's called "Can I Kill You?"  Sometimes it takes a comedian to cut through the nonsensical double-speak of politicians, big business and lobbyists. Here Joel says he'd love to be chosen to sit on a death panel--something akin to the Gong Show--but makes a fabulous--and in my mind very true--statement: 

But you need me on your death panel precisely because, unlike politicians and doctors, I can admit that we already have death panels; they just prefer to go by the name insurance companies. Some people get rejected by the death panels because of pre-existing conditions, lifetime-spending caps or drug co-payments they can't afford. Others die because they are freelancers and don't have insurance, so they don't go to doctors.

If you have a moment to go to the link and read the whole article, be prepared to laugh because we just cannot keep crying over the lack of thoughtful arguments in this debate.

But I'm not here to write a polemic, only to say that I've actually lived in France and saw their health care system up close and personal. And, in short: I loved it and it works.  One of the great things about their system was that doctors actually make house calls.  I know, I know--who has the TIME?  But when one considers the risks of being admitted to a hospital including the risk of getting a nosocomial infection--it makes me wonder how we haven't considered a similar option here. 

Which brings me back to the present.  Just this week my boss said he had a great idea: Go to a person's home to perform a neuropsychological evaluation.  I wasn't sure I heard him right at first--A  house call? Who has the....?

And then I began thinking about my experience with my own father. We knew there was something wrong and that he needed a complete evaluation. I knew from my own experience that he would do well to have a complete neuropsychological evaluation given that he seemed fine on some days and quite impaired on others. And yet, schlepping up to the University Memory Clinic was not only difficult for my parents but completely unrealistic.  When I met with them on the third visit to the clinic I could see that they were both exhausted, irritable and spent.  As I see it there are numerous benefits to this model.  I think about how my father's ability to think clearly would have been much improved had he been able to remain at home rather than being driven to a new and strange place. I can only imagine the effect of his anxiety on the tests not to mention the sheer exhaustion and confusion of being in an unfamiliar place.

So Tony, if you're reading this: Please give the house call testing a try. I only wish you had started it a year ago!

Advance Directives and the Hullabaloo over Healthcare Reform

In the Op-Ed section of today's Salt Lake Tribune, Dana Wilson, who was a professor of medicine at the University of Utah from 1970 to 1996, writes a cogent article urging thoughtful research on the topic of "Death Panels."  The article, called "To my fellow seniors: Nobody's gonna pull the plug on us!," she points to the actual bill and says the spinsters count on all of us to be lazy.  In other words, read the bill before screaming at your elected officials.

I believe that we have too few discussions about what our end-of-life wishes are and what it means exactly to keep a person alive. I worked in a hospital where I saw too many adult children demand that we "Do everything possible to keep grandma alive!" On one occasion, I witnessed a team of medical professionals working furiously to save a 90-year old woman by using CPR. The chest compressions were breaking the woman's ribs. Even if the efforts had been "successful," the woman's life would have never even approached anything like what she had prior to the event.  It was a gruesome scene that I will never forget. The attending physician turned to me and said, "If this woman's son is in the waiting room, please bring him in." 

The son had demanded that the doctors do whatever necessary to keep his mother alive--even though it was well documented that his mother had expressed a DNR (Do Not Resuscitate) order. I found the son and his wife and escorted the into the trauma room. When the son saw his lifeless mother being forcibly kept alive--knowing it was against her wishes and also knowing that she would never be able to return to a normal life, he asked the doctor to please stop.

Though deciding now what our wishes will be "in the event of" is difficult and even counter-intuitive for most of us, we do our loved ones a disservice to not have that candid conversation. As a close friend of mine who works in the Intensive Care Unit at a local hospital says, "There are worse things than dying."

I hope anyone interested in this debate will take the time to do two things: First, take Dana Wilson's suggestion and actually read the bill that is being proposed to congress.  Secondly, take the time to listen to the interview I did recently with Maureen Henry--the Executive Director of Utah's Commision on Aging--on the topic of Advance Directives including how to name a health care agent and complete a Living Will.

If you live in Utah, you can also go directly to the site www.UtahDirectives.org where you will find a toolkit and the necessary documents to make decisions about end-of-life care. If you are from a state other than Utah, the website www.HelpWithMyParents.com can provide you with the necessary links under the category "Advance Directives" to direct you to where you can learn about what you need to do to complete a form detailing your health care wishes.

If you need to speak with someone about this topic, contact us via the Help With My Parents website and we'll respond to you directly.

Stories, Narratives, Podcasting and...The Nature of Truth

I thought I would take a moment to describe the podcasts I'm working on for the site Help With My Parents. The idea first came to us after listening to the compelling stories on public radio--whether on This American Life or Story Corps. This is, yet again, about the narrative--one that we miss if we don't listen carefully--the narrative of the caregiver.

Before beginning the project I got the chance to meet briefly with Amanda Barusch, a professor I know from the University of Utah's College of Social Work. Amanda said she thought there would be much we could learn from recording and listening to the stories of those who have cared--or who are currently caring for--and older adult.

I think Amanda won't mind my quoting her here as she speaks about the value of stories:

Stories are essential to our personal and collective development, so narrative is a vital component of any enterprise that seeks to understand what it means to be human. In narrative methods science and the humanities merge, generating insights and revealing meanings that are intensely personal, broadly relevant, and inevitably fluid. This, I think, is the nature of truth.

Isn't that beautiful and amazing?

As Amanda talked about what to ask a caregiver, she suggested one question that resonated with me: What would you have done differently? This is the one question I felt was so important to ask so that a caregiver can become our teacher. I consider the stories sacred because they include the intimate and sometimes very gritty realities of what it means to provide care to someone whose capacities are diminishing.

And, interestingly enough, the answer to this question is often a surprise for me.

I hope you can check back in order to listen to these podcasts as they become available. If you are reading this post and think you might want to add to our nascent library of stories, please contact me directly as I am interested in hearing from you.

The Diagnosis

About a year ago, my mother called to say she had something she needed to tell me. I assumed later that she chose to tell me because of the work I was doing at the time with older adults. She confided in me that my father's memory was very poor. Indeed, the night I went to see my parents, they were caring for one of my sister’s children because of a family emergency—their youngest child was ill and they needed my parents to watch the older two children. Perhaps because my father was in an unfamiliar environment, he was extremely confused. He asked repeatedly where a particular room was in the house and even, at one point, said he felt as though he were either in a different state—even a different country. He talked about dreams he had recently that were apocalyptic in nature and he talked about getting lost while driving.
My mother later explained to me that this kind of memory problem had been going on for a long time but that she was hopeful it wasn’t something really serious because he had good days quite often.
At first I was alarmed. And then embarrassed. I wondered: How could I have missed this? I thought back to the many conversations where my father had forgotten some detail—a trip he and mom and been on, a guest who had spent a day at their home, the status of one of his grandchildren who had been ill. I realized that most of these events occurred when my mom was present. She often interrupted my dad before he could say something that made the memory loss seem extreme. “Senior moments,” I thought, and chose not to concern myself too much with what was surely normal memory loss that comes with aging. But my mother couldn’t ignore the signs any longer. After all, it was getting harder and harder to explain the lapses—and there was surely some worry about his safety.
So she asked me for help.
Eventually I arranged to have my dad seen at the University of Utah's memory clinic. He saw a neurologist who took a history and then two students who had him respond to questions both simple and complex. Eventually he went through a neuropsychological evaluation that lasted four hours. I went with my mother to hear the results. The doctor was blunt. "Your husband and father's memory is in the fifth percentile. We believe these memory problems--this dementia--is due to Alzheimer's Disease."
This would be the beginning of a difficult road for my family. I hope by sharing some of my personal experiences I will encourage a discussion around this issue—especially from others with family members struggling with this disease.

More About Me

Before delving into the details of my father's illness and my work, a bit more indulgent post seems appropriate. So, a bit more about me and my reason for writing.

If I had to describe myself to a stranger I’d say first that I’m curious. I’m curious about what makes people tick thereby exploring what makes me tick. I am interested in what keeps us stuck and what motivates us to change and grow. And I’m especially curious about the narratives we use to tell, and in fact, define our life and in how those narratives are changing due to technology.

Curiosity to understand others bordered on an obsession when, as a young adult, I got the chance to live in France for an extended period of time. I was driven by a desire to understand a language other than my maternal tongue. But more important than understanding what was being said, I was determined to learn how to speak the language so that I could converse in that language. You might say that I not only wanted to learn to speak French but rather, I wanted to become French so that I could get around the barriers that kept many from wanting to speak with an American. I wanted to learn it all, the idiomatic expressions as well as the arcane language only used by academics. And so I set out to mimic and eventually adopt the stance, the facial expressions and the body language of those I met and, quite frankly (pun intended) fell in love with.

During that first part of my time in France, I lived in a three-bedroom apartment on the outskirts of Paris. In the apartment was one enormous walk-in closet, which became my private studio. I stayed awake into the early hours of the morning during the first month reading aloud to myself from a brand new copy of “The Stranger” by Albert Camus. I listened to the words as they rolled—or sometimes trundled—off my American English tongue. I looked up every word in my Larousse pocket dictionary and swore I would eventually learn to create the velar “r” that stumps so many non-French speakers.

Many things about Camus and the existential movement intrigued me and still do. But as I look back, what fascinated me the most was the beauty and intensity of the simple prose that Camus employed to create a shocking tale of an existential anti-hero devoid of feeling.

Since that time, I’ve been intrigued with others’ narratives and the descriptions of human emotion—or lack thereof—that I hear from my family, friends and clients. I’m fascinated with how we use written and verbal symbols to communicate that emotion with others and ourselves through our own internal voice. And I’ve realized that writing poetry is just not enough to say what I want and need to say about aging.

My hope is that by writing about my experience and my work, I can share insights that might prove useful to you as you care for an aging loved one or, as is my case, you care for an aging loved one while learning to better care for yourself.

Till human voices wake us, and we drown.

The last line of T.S. Eliot's poem, "The Love Song of J. Alfred Prufrock" is: Till human voices wake us, and we drown.

I use this as the title of this entry for several reasons. This poem has inspired me since my adolescence. When I first read Eliot, I felt he was saying what I would say once I found my own poetic voice. The poem was a source of inspiration and frustration to me. Inspiration because it spoke to a part of me that was terribly lonely and afraid but an inspiration because it spoke so beautifully, so lyrically about how those feelings connected us to one another. I'll write more about the poem in future posts.

Composing my first blog entry is nerve wracking, to say the least. It’s something I’ve avoided until now—probably for all the usual reasons any of us avoid exposing our inner lives to others—insecurity, anxiety about the unknown, fear of judgment—and because I consider myself a private person. Despite those reservations, here I go:

I'll start with a word about me:

I am a clinical social worker who loves to process emotion, thought and experience through dialogue. And yet I’ve told myself writing a blog is impossible. I’ve always written poetry, rarely prose. (I say—only somewhat jokingly—that I write poetry because that’s all the sustained attention I can muster—anything longer than twenty lines becomes unwieldy.) But the dilemma—and there is a dilemma here—is that I do in fact have something to say that I believe could help others.

I plan to write candidly about caring for older adults because it is something important to me professionally and personally and because I believe having such an honest and open dialogue can offer insights that will benefit other caregivers and other professionals. I hope to be challenged by the task as well as by your comments. I also hope to offer solace to those feeling lonely and afraid by sharing my own loneliness and fear.

But this is only a part of what I hope for. The other, and equally important hope I have is to celebrate the role of caregiver and share the joy and serenity that comes from loving and caring for our elders.