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The Alzheimer's Project on HBO: A Caregiver's Response


Not too long ago, I had written an email to someone who had witnessed the love of a caregiver for his wife who had Alzheimer's Disease. It was in response to the awe the writer had for the compassion, patience and tenderness this man had for the woman who long before had succumbed to the last stages of what has come to be known as "the long goodbye." 

For those of us who know this disease intimately, in having watched loved ones go through it, including those whom we have cared for, we know all too well the qualities that are necessary to walk this particular path of emotion which seems an inherent part of the process of watching someone you love slowly slipping away. We know, too, for those of us who have eventually lost that loved one, the aftermath that comes, and unfortunately is rarely addressed in the discussion about Alzheimer's Disease.

My email in response to the writer, in this case, was a remembrance of my father, whom I had cared for for many years with my mother until his death in 2005. In fact, it will be less than a week now until the anniversary of his death, and no matter how much time passes, I am still affected by certain emotions when facing the week or two surrounding the anniversary. I am also still recovering from the intensity of that time in myriad ways--ways still which I am discovering even though four years now have passed.

It was with this recent communication in mind that I watched The Alzheimer's Project, which is to run consecutively through tonight, May 12th, on HBO. Knowing that I might need to be working on other things (I am the Co-Founder/Board Chairman of The Humanitarian Media Foundation (HMF), preparing for HMF2009 in Reykjavik, Iceland later this year), I watched thedocumentary series online, knowing that I would want to write about it, in case there were others affected by the disease--patients, colleagues, friends, family, other caregivers of someone suffering from Alzheimer's Disease--who did not get a chance to see it on HBO and might want to see it, as I did, online, or when it shows during other scheduled times during HBO's rotation. 

In having been involved with the media industry, and now in particular in dealing with humanitarian media--of which discourse surrounding trauma or illness is an inherent part--I also knew it would be important to review this for a larger community as well. But for myself, it was only in the back of my mind that I thought I might be affected emotionally by the series. I thought, perhaps, enough time had passed. 

As is the usual tendency of a former caregiver, who inherently tends to, out of necessity and then out of habit, put someone else's interests above his or her own, what mattered more to me was how writing about this might help someone else (for the encapsulation and review, please see below). 

In terms of writing this as a former caregiver, depictions of Alzheimer's Disease can be challenging. Sometimes it's because you know that the filmmaker has never experienced the disease personally. Perhaps they have known of someone with Alzheimer's Disease, but there is that essential "sensitivity chip" missing, if you'll forgive me using the term--that lack of nuance and emotion that is necessary to even come close to depicting what it is like either as a caregiver or as a patient. Even the slightest nuances reveal how much a filmmaker does or does not know. 

Others, however, nail it--such as Sarah Polley did in the film Away from Her (2006). I remember at the time sitting in a movie theater in Los Angeles, sitting alone, knowing I would never have been able to go to that movie with someone, or else feel like an idiot bursting into tears, knowing there was a pretty damned good chance I would be a mess. I was fine throughout the first part of the film, but the moment the main character, played by Julie Christie, went into long term care, I was indeed a mess. There was no suitable word for what happened. The sobbing ended up being uncontrollable--a release which came months after I had left my mother in our hometown after my father had died--and I was once again living on my own, trying to get back to some semblance of my own life. 

I instantly remembered the moment we had to put my father into long term care; his fear had become so great he had begun to lash out--and even though we knew it was the disease and not him--we were in jeopardy. I remember my sisters leading me from his room in the nursing home, my legs barely able to move, my body heaving in uncontrollable sobs of guilt and indescribable pain, feeling as though I were abandoning him, though knowing the time had come when he needed more care than my mother and I could give to him. I knew my mother needed to stay with him a bit longer; it took my sisters leading me to the car, knowing otherwise I might have, out of some bizarre, nearly out-of-body emotion in that moment, refused to leave.

Sitting in that theater, the sobs were the same, as though I were re-experiencing that moment and the ensuing, powerful emotion. I remember feeling the other people in the theater, sensing the ones who were also feeling what I was. The ones sobbing were the ones who were feeling it as though they were also experiencing it again themselves. The others were sitting quietly, perhaps feeling some degree of empathy, but not getting it, there to watch a good film with Julie Christie, or because they had read the glowing reviews. (As an aside, the glowing reviews it received were for a reason, but to this day, I cannot see the film again.) I could also feel a couple of couples around me--one couple several seats away, and another one behind me, whom I could sense wanted to reach out among those of us who were bawling uncontrollably, perhaps embarrassed for us, but unable to do anything about it. One woman nearby, seeing the movie with what looked like her husband, even kept reaching for her purse, as though wanting to find a Kleenex as she looked in my direction. I was too far gone, or I would have turned to them, letting them know I was all right. I was just processing emotion, perhaps, I hadn't allowed myself to feel in the months, and perhaps at that point, the year since my father's death. 


In terms of the media--and film in particular--which is relevant here, too, in writing aboutThe Alzheimer's Project--some people ask about the power and purpose of certain films...the use film has as a medium. This is one of those cases in which I can definitely say that such films, and in this case, both narrative films and documentaries about certain subjects, serve a truly important, cathartic purpose. Any film which can access the deepest of human emotions--like love, poignancy, compassion--and even darker emotions so that we can better understand them--have the truest possible purpose, even if that purpose is in catharsis, or in finding higher ground.

In terms of the emotions of caregivers themselves, and perhaps getting away from the media aspect for a moment, for those of us who were caregivers out of love as much as perhaps out of necessity, whatever you once would have done or would have felt becomes irrelevant. It is something that you face having been a caregiver, and in some way or another, it always remains: it is now who you are, and it is something that I have, slowly and with time, come to embrace, putting those emotions and tendencies to work now in a different area which is warming and healthy, using it, I warmly hope, for the right reasons. Some are still haunted by the experience, by the time that perhaps was lost, but never disparaged. Where once I would have thought of myself and what I most wanted, in having this experience, and, again, out of love and in memory of my father, it would inherently be at this point about serving others, and in doing so honoring him and who he most was before taken by this illness. In having been with my father during his last years, I came away from it with a compassion that was innate, but had never before been tapped, and perhaps with a strength I had never truly known that I had.

That strength and compassion has shaped my life in ways I never anticipated. My choices are now different. My passions are aroused with a ferocity of one who knows what certain emotions feel like, including the strength of compassion, and what inveterate passion can do, and with an accompanying pragmatism in not wanting to waste unnecessary time. The sense that life is too short is an over-used adage which makes intellectual sense to most, but for those of us who have lost someone close to us, and especially those for whom we cared to the end, it is an emotional reality and an impetus--based on experience--to take every single moment and, if we can, live in the present. There is also, in some ways, an inherent lack of compassion and anger toward any kind of solipsism, whether in ourselves or in others, and particularly if it serves no purpose. Feeling sorry for one's self is not an option, and that can be both beneficial and destructive. We are sometimes so used to being strong, that vulnerability--the sense of needing something from someone else, even if it is a shoulder on occasion--can, however absurd it may seem to others, to us feel shameful or embarrassing. That, perhaps, is the darker side of this experience in terms of its personal effects.
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The one criticism I have of The Alzheimer's Project (again, please see my brief review below), is that it did not deal with the aftermath of being a caregiver. I also had a problem with the part on caregivers. It glossed over the experience--acceptable, perhaps, to those who aren't caregivers, but for us, a disappointment. And in perhaps the desire to find hope following the Alzheimer's patient's death, it presented only the rosy picture that life does go on and can be wonderful. It can be, but, again, it can also be a struggle. There are certain nuances and emotions that will take time and effort to understand. We are not the same people as we once were, some part of us perhaps changing as it did, albeit in different ways, as we cared for those we loved. It is a shared experience. And after years of focusing on someone else, to now all of a sudden have to handle dealing only with one's self, our own emotions, our own problems, our own health--our own desires for what comes next, if we even know what those desires are--can be a different kind of hell. Some of us have transferred those caregiving impulses to other projects which in themselves make a difference. But we still flounder in various ways. We still have to get used to our own vulnerability, figuring out how to handle it instead of subsuming it as we once did for the good of someone else. 

This is something that needs to be discussed--and it is relevant to all caregivers, of whatever kind--and even those not caring specifically for Alzheimer's Disease, but for anyone who is looking after a loved one in a slow descent who needs someone else to be there. The old saying, which I've used in the past, is how can you give to others if your own cup is empty. Well, there are many of us who have operated on an empty cup for perhaps years who are now facing the bizarre and sometimes frightening dilemma of realizing the reality of that void and are trying now to understand what to do to fill it--if we even remember how. And again, as we have now necessarily changed, perhaps the old ways of filling that cup are no longer as poignant or as relevant. We have to ostensibly remember ourselves again--and/or discover who we now are after that kind of life-changing experience. That can sometimes be a difficult process.

Every experience is different--ours as much as the Alzheimer's patients'. That is something that I was happy the series made clear. Whatever the similarities in the biology and experiential arc of the disease itself, it is an individual experience that affects every person--patient or caregiver--family member or friend--differently. All we can do is try to remember some of the more important common threads, which The Alzheimer's Project also made clear, and most notably in Part II: What's Happening to Grandpa?, in which it was talking about lessons for kids who are approaching their parents or grandparents, but is also true for the adults--and caregivers. I'm paraphrasing here those lessons as stated, but also adding what is important for caregivers, too, to remember:

There are no silly questions about Alzheimer's Disease. Let me stress this not just about the disease and the patient, but about being a caregiver.

-> Go with the flow as best as you can.

-> It's all right to be afraid at times. Let me amend that to say, it's all right to feel the emotions you feel--again, whether you're a patient or a caregiver. All emotions are valid. The only time to worry is if emotions are destructive; that is a time to find immediate help.

-> Sometimes it's the disease talking--not the person. This is also true for caregivers as well as patients. The caregivers also have bad days, and tempers flare, as does frustration. It's a natural part of the process, even afterward. It just isn't all right when any kind of violence takes place. That needs to be addressed immediately--whether by patient or caregiver.

-> You can be the keeper of memories. You, friends, and family, should both remember who your loved one once was, and who he or she is as the process continues. In my case, there were some poignant moments which happened with my father as he declined. There was a tenderness in certain moments I had never before seen in him, and these moments I will remember and be grateful for always.

Below are two things: one the email I sent to the woman who watched the husband with his wife who was an Alazheimer's patient, as mentioned here at the beginning. The other, an encapsulation of all four parts of The Alzheimer's Project, along with thoughts about each, though again, this is coming from my own perspective as a caregiver, and specifically as a caregiver with my own father. Every reaction is valid, based on experience. 

And as a last thought, here, with the warmest possible emotion, is to all of us who have been touched by this disease. I have to say, again, that it is a disease I wouldn't wish on anyone--but it is one, like any terminal disease, or any intense crisis, which can bring out every imaginable emotion and every kind of experience. The most we can do is have compassion for the one suffering, and also, if we love them and care for them, have compassion for ourselves if we can. The most intense of human experiences change who we are and inform who we will become. And that is something that is never easy. All we can do is walk forward as best we can, live in the moment if we can, and look forward to the future, trusting that we will be all right. If we truly believe that, we often will be.

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The Alzheimer's Project -- Executive Producers: Sheila Nevins and Maria Shriver

Part I: The Memory Loss Tapes, Part II: "Grandpa, Do You Know Who I Am?," Part III:Momentum in Science, and Part VI: Caregivers, shown on HBO from May 10 - May 12. 

Links to each Part are highlighted and go to HBO's dedicated site for The Alzheimer's Project.

Part I: The Memory Loss Tapes

The Memory Loss Tapes which screened first on Sunday, May 10th, and may still be found on HBO's dedicated The Alzheimer's Project site online, is a simple, unadorned introduction to the experience of the disease through several different patients and their caregivers, showing the progression of the disease from diagnosis through the passing of one Alzheimer's patient. What I appreciated about this depiction was that the filmmakers and producers, Shari Cookson and Nick Doob, let the depiction of the illness speak for itself. This was, appropriately, no slick production--which at first was jarring, as documentaries these days can have the same production values and flashy visual style as some narrative films. But like many HBO documentaries of this kind, this in its simplicity and honesty was more and more affecting as time went on. There was no voice over, there were no flashy graphics, no presence of the filmmakers themselves asking questions or explicitly leading the topics of conversation. The filmmakers, instead, just allowed the camera--and us--act as viewers into the slice of life of those suffering from the disease in terms of both the patients and the caregivers, letting them speak for themselves.

Part II: Grandpa, Do You Know Who I Am?

Grandpa, Do You Know Who I Am?, hosted by Maria Shriver, and based on the book that she wrote for children based on her own--and her children's--experiences with her own father, was truly poignant in that it dealt with children and their reaction to having a loved one with Alzheimer's Disease. This first aired on Monday, May 11th, produced and directed by Eamon Harrington and John Waitkin. A truly valuable resource for children and honest about the various emotions children feel when faced with the disease. More valuable still were the lessons that both children and adults can learn in facing the disease for themselves.

Part III: Momentum in Science

Momentum in Science, part one of which was shown on Monday, May 11th, the second part showing tonight--produced by John Hoffman and Susan Froemke, was, thankfully, a break in the proceedings to concentrate on the more empirical aspects of the science. After bawling for a while, to have some kind of wholly intellectual stimulus was warmly welcome. Here scientists talked about the first discovery of the disease by Alois Alzheimer, the physical manifestation of the disease and the discovery of its specific hallmarks in an affected brain--the amyloid beta (Aβ) plaques and tangles which are the result of the production of too much of the Aβ peptide, including the inability of Aβ to dissolve into the system--which cause the death of synaptic responses and subsequently, the neurons themselves, which control brain function. This also goes into the role of other potential contributing genetics and other factors which can either influence the rate of deterioration in the brain, or the triggers which affect Aβ production. The point is importantly made that Alzheimer's Disease, while affecting the brain, is a disease which is also connected systemically to the rest of the body, and overall health, including cholesterol levels, diet, amount of exercise, and even social functionality, etc., truly do make a difference in the disease's manifestation. Also discussed are the possibilities inherent in science in both understanding and treating the disease--in this case, also showing a drug now in clinical trials which reverses the effect of excess Aβ production by using Aβ antibodies to trigger the body's natural defenses. This was a truly exciting episode to watch in both parts--which again was also a good intellectual counter to the emotion inherent in the other parts of this series. It also does give vast amount of hope that some kind of effective treatment is on the horizon. For my father, who was one of the first waves of patients who took Aricept, but unlike many patients, dd not have any noticeable positive effects from taking the drug, this made me truly happy for other patients who may one day have access to truly revolutionary therapies.

Part IV: Caregivers

Showing tonight, May 12th, Caregivers, directed by Bill Couturie and produced by Couturie and Anne Sandkuhler, is the depiction of Alzheimer's patients and their caregivers in following five different stories, each at a different stage of the disease's progression. This is the only part of the series with which I had a problem, and perhaps because I am inherently close to this subject matter. The filmmaker inserted himself into this part, and as I noted on Facebook last night, my protective hackles were raised at the often "snarky" tone of the filmmaker's questions and comments--even to the Alzheimer's patients themselves. This felt like a film made by someone who could not see emotionally inside the caregiver's struggle, instead giving it perfunctory attention, but not really understanding the subject matter itself. If he were familiar with the subject, then it would be the work of someone trying to separate himself from it--thinking it might be cathartic for him to do it--not necessarily as a service to caregivers themselves. Unfortunately, for me it smacked of solipsism, which as mentioned, I have an inherent problem with, and moreso with the tone the rest of the series tried to adopt. And it is unfortunate, because the people themselves in Caregivers were wonderful and had some truly poignant and wonderful insights. This is the only part of this series which stumbled.

Again, any of these parts of The Alzheimer's Project may be viewed online via http://www.hbo.com/alzheimers/index.html, which also offers resources and additional documentary shorts which act as supplemental material. It is warmly worth seeing across the board, and my greatest respect goes to Sheila Nevins and Maria Shriver, as well as the filmmakers and participants, for addressing a truly harrowing disease.

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C****,

With my mother, I took care of my father for several years, as he also had Alzheimer's Disease. My father was a small town district attorney--we used to think of him as our own, prosecutorial Atticus Finch, and as his youngest daughter, I always felt like Scout to his Atticus. He was a strong, kind, but stoic man, who didn't say "I love you," easily. In taking care of him those last years, and his mind could no longer act as a defense mechanism against emotion, he started to truly feel, unencumbered. There were emotional storms during which he was deeply afraid, but in other moments, it also included him spontaneously coming up to me with tears in his eyes, putting his hand on my arm, looking at me deeply, and telling me he loved me. Sometimes those were the only words he could manage. Even if he couldn't remember my name. The emotion was always there. Caring for someone you love deeply, you remember the true meaning of that emotion. It is also true, too, when you are at your most vulnerable, as he was, and without the power of his mind stopping him from feeling.

I think all of these are the warmest possible lessons on what love means...when it comes, pure, unadorned, but with a depth that is deeper than most things in life will otherwise ever be.

When I think about loving someone, I know if true love is there, it will have that depth, warmth, and transcendence as its hallmarks. Any other quality or emotion will obscure it--perhaps because of the defenses we erect, and sometimes, too, even because of the wary, protective power of our own minds.

Thomas Mann said that love, not reason, is stronger than death. I'd posit that it is stronger than much else we will ever know. 

Warmest regards,
Kris

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K.J. Wetherholt is a former media executive and currently a writer, producer, and Co-Founder/Board Chairman of The Humanitarian Media Foundation (HMF). Her book, The Illumination: A Novel of the Great War (2006) will be released in paperback next year and is currently being packaged as a feature film out of Europe for future production.

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*(As a note: I ended up writing about this in a separate article--which focused on the similar trauma and or stresses of aid workers, who feel similar kinds of emotions in caring for crisis-affected populations. It is a kind of situational trauma, and some consider it a kind of PTSD, which affects both caregivers and those working with high-stress, often 24/7 crisis situations. For further information, please write to pr@humanitarianmedia.org for a list of articles which deal with this kind of trauma.)

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