During my 15 year sojourn as my mother’s companion and, eventually, her caregiver, she developed what I call Dementia-Lite, the cause of which was most likely vascular mini-strokes clearly defined on a series of brain scans.  It progressed slowly for a few years then plateaued for the last eight years of her life.

     When you’re acutely aware of someone with dementia, imagining yourself with dementia comes with the territory.  My mother imagined herself demented when she was in her early seventies (she died last December, at 91, of lung cancer, not dementia) because her mother and sister developed advanced versions of dementia.  Both died in skilled nursing facilities.  It scared her.  Although I was a concentrated sideline observer of my grandmother and aunt, I didn’t imagine myself with dementia until I became my mother’s companion and caregiver and she developed dementia.  It didn’t scare me.  What scared me was developing dementia and not having someone like me to be my companion and caregiver.

     As I accompanied my mother and considered what I knew of her mother’s and sister’s dementias, I developed a theory:  It seemed like the kind of care and companionship my mother was receiving might have something to do with her dementia's lack of progression.  I kept a detailed online journal of our adventure together but I never wrote directly about my theory.  Having become acquainted with several people who were caring for elderly parents exhibiting various stages of dementia, none of whom echoed my Que Sera, Sera outlook, on the rare occasion when I alluded to my theory I disguised it so as not to seem judgmental.  Every display of dementia is different and implies diverse developmental and caregiving challenges.  Ensconce that in a society that is distinctly unsupportive of its elderly and its caregivers and, well, I wasn’t interested in being unkind or unfair.

     During the last year of my mother’s life I received unexpected confirmation of my theory while my mother was in a skilled nursing facility for rehab after a physically debilitating bout with pneumonia during which her lung cancer was diagnosed.  An OT put Mom through a curious exercise that appeared to be a cross between an IQ test for children and a Chinese board game.  She reported that most people with mild cognitive impairment are easily confused by the game.  My mother was not only not confused by it, she performed it well, quickly and was dismissive of it.

     The OT described a scenario she watches play itself out time and again in the lives of those with Dementia-Lite:  The person is placed in a setting much like the facility my mother was in: Little available stimulation; few visits with intimates; constantly changing staff and roommates; no one available in any substantial way to accompany the client; a lot of time spent indoors and away from normal environments; a garnish of relatives and friends bamboozled by their altered loved one who spend most of their time trying to correct their loved one or responding with dismay, anger and alienation. The loved one slips away from them and their world. The dementia increases. Inexorably.

     The OT wanted me to know that this wasn't happening to my mother because instead of expecting my mother to adjust to me, I was adjusting to my mother. As I adjusted to her, she said, I preserved her confidence in herself and her relationship to the world. Thus, my mother continued to use her brain to work things out. She may not have worked them out as I or what we consider undemented society would have. Her understanding of life may have been somewhat different than mine because of her dementia. By confirming that her reality was as legitimate as mine, by incorporating her reality into our shared life, though, I not only kept her firmly in her life but I allowed her to expect to be a force with whom to be reckoned in Life at Large, she conducted herself as such and she was.

     I’ve been approaching the debut of the HBO special, The Alzheimer's Project, with trepidation, partly because of the unbelievable blurbs for the show’s science portion, partly because I expected it to echo the production sensibilities of most of these shows:  Trot out several “victims” of dementia, coalesce them into a horrifying blob of nonentity, gloss over the complicated field of dementia knowledge and research, feel sorry for caregivers and encase the production in styles of background music and editing that turn the it into little more than a dirge.  Much to my surprise, I was impressed by the first film in the series which aired last night, The Memory Loss Tapes.   The portrayals of all who were filmed, those with dementia and those in their lives, sparkled with humanity. The editing revealed the eccentricity and individuality of each of the primary subjects, including how core aspects of their lifelong characters continued to broadcast loud and clear through their experiences of dementia. The editors got a little carried away with Yolanda Santomartino's hallucinations and forgot to give us a solid idea of the life out of which her experience of dementia evolved. Despite this blip, I was fascinated that she recognized herself in photographs but, when she looked at herself in the mirror, her reflection wasn't her, it was "Ruth". We never imagine ourselves exactly as we are.  It was revelatory to see this universal human trait taken to the limit.

     People's core characters were, clearly, not "lost" in dementia, even as some, particularly Joe Potocny, expressed the feeling of losing themselves or, like Woody Geist, mentioned they didn't know where they were or where they were going. It was obvious, though, that each featured subject and all the peripheral subjects in the facilities, even those obviously agitated, were individuals with histories and idiocyncrasies that shone through their dementia. I was relieved. One of my pet peeves with the portrayal of dementia is the tendency to focus on what, or who, has been "lost", rather than focusing on the person who continues to exist. 

     I smiled, grinned, even chuckled throughout the film as these people expressed themselves with obstinate individuality.  My favorite, by a smidgen, was Josephine Mickow, The Queen of Scat. What a force! Her relentless creativity refuses to budge in the face of what appears to be fairly advanced dementia. I was astonished and heartened that Josephine and her daughter communicated easily. It was as if, as Josephine created her scat language (creativity stripped to its core, I think) to replace the language she originally absorbed and was forgetting, her daughter learned it. That's what superior caregivers do.  They follow more than lead. Josephine’s daughter appeared to be suffering from compassion fatigue while the film was made, as suggested in her reaction to the stone incident, in which she blaming herself for her mother putting a stone in her mouth. I could tell, though, despite this, she was the perfect companion for her mother and had created a uniquely perfect environment for her. I sensed, too, that she knew this, did it with utter love and lived it with striking humility.  In the periphery of the lens that was trained on her, I could tell she had a sense of staunch self-possession and pleasure to be able to do this for her mom. 

       Woody, a man endowed with an angelic singing voice and a gentle soul, and Cliff, a born showman and magician, both of whom were experiencing fairly advanced dementia, mentioned how lucky they and "we" are. Woody mentioned it several times. I hope this makes people stop and think once more before they lump everyone with dementia into The Land of the Lost and Lamented.  The film demonstrated without words that it is wildly inaccurate and unfair to make any assumptions about those with dementia based on words like “mild”, “intermediate” or “advanced”.  Bravo!

     I couldn't help it: From the obvious clues given in the show about the location of Joe Potocny's blog, I found it. If you're curious to see how he has been doing since March of last year when he was filmed, give it a click. His last post was a week ago. Recent posts attest to his frustration and his fighting spirit.

     I noticed a humble link on the right of the page introducing The Memory Loss Tapes episode. It's a link to a Viewer's Guide for the episode. The last page of the Guide indicates that it was created for "screening and discussion panel[s]". Aside from several pages of general information about Alzheimer's, it includes "Discussion Questions and Conversation Starters" that would be helpful in focusing on pertinent details of dementia and positioning oneself to observe and think about it astutely. Some of the questions prompt the viewer to examine personal feelings about dementia, old age and caregiving. All the episodes offer these guides.  Don't overlook this resource if you’re watching the films. 

     Imagine…this first film in HBO's The Alzheimer’s Project series makes it much less frightening to imagine what might be the inevitable for some of us.  Now, all we have to do is bravely imagine a society that embraces our demented, while we invent “the cure”, with as much love and interest as we embrace our progeny.  Put on your thinking caps, people, and fasten your seatbelts.  This will be intense.