Review: Fraying At the Edges

New York Times Special Section,   Sunday, May 1, 2016

This past Sunday, the NY Times had an extensive article profiling a woman in the early stages of AD.  Geri is an insightful and courageous woman.  Courageous in her willingness to share her experience, and courageous in meeting the challenges of her disease diagnosis and progression head-on.  As a geriatric social worker and care consultant at the Alzheimer’s Association, I have sat with many families and individuals at various times in the disease process and it was thrilling for me to read how clear and explicit Geri is in her description of the changes she is experiencing.  Geri represents a huge culture shift in the world of dementia diagnosis, care and programming.

My first professional experience with Alzheimer’s patients was a brief moment of walking into an adult day health program and then immediately walking out, “Not for me,” I said.  Twists and turns in jobs brought me next to working in a dementia unit at a nursing home.  Thankfully, the nursing home provided excellent care and was a draw for families and the community at large.  Nevertheless, the dementia units were housed in the lower floors of the home, secreted away from immediate public attention.  But still the care and programming was good.  Residents here were in late stages of the disease – wandering the halls, using language that was meaningful just to themselves, unable to bathe or toilet independently, rarely recognizing their own sons and daughters and only occasionally combative.  There I learned a tremendous amount about the disease and grew unafraid.

My next job took me to the Alzheimer’s Association as director of Connections.  In this position I sat with families as they experienced the struggles of managing people at home while in the middle stages and asking questions about what would come next.   There were safety issues, challenging behaviors, repetitive conversations.  At the time, in the culture, the conversation was more about caregiver burden than it was about the person with the dementia diagnosis.  Dementia was horribly stigmatized; we  frequently commented  about people who wouldn’t say “The A Word”  and hoped for a future when the word Alzheimer’s didn’t invoke fear and hiding – just as cancer had once upon a time.

I was fortunate enough to participate in a program offered by the Alzheimer’s Association on the early stages of the disease.  The program was both educational and modeled on a support group concept allowing people – both the person with a dementia diagnosis and their care partners — to voice their concerns and articulate their experience.  This program was a true beginning in recognizing the importance of including the person with the diagnosis in the discussion.  So much has shifted such that now we have Geri.

There were many optimistic themes expressed in this profile — learning to let go, re-invention and finding purpose and even finding some positive aspects in relationships as Geri and her family embrace her changes.

Geri is slowly learning to “let go.”  She no longer feels that she must be the family’s schedule keeper, she understands the way she dresses, for instance, is not critical, and she is letting go of being in control.  But, she says, she is also letting go of her ego.  The question of identity and ego and re-inventing herself returns again and again.  Geri reflects on the “default self” as described in a Richard Ford novel.  What an interesting thought – what do any of us default to?  Which old and reliable patterns do we cling to?   Geri was newly retired and had already begun searching for a new role.  Wisely she began seeing a therapist to explore retirement concerns when she began noticing her cognitive changes.  Can we perhaps understand that through a life-time, we re-invent ourselves, hopefully keeping our essential selves. This seems an important concept.  Any aspect of aging, whether it be physical appearance or mobility or health or cognition requires adjustments and learning to accommodate to change.

What could be optimistic or as someone asks, “How do you avoid sadness?”  For Geri and her husband, her Alzheimer’s diagnosis has been both positive and negative.  She describes it as the “fortunate in the misfortune.”  They have taken this opportunity to be more open with each other, trying new things, as he has with his acting classes and performances.  This is not unlike the experience many appreciate when given a diagnosis of a life-threatening disease.  It is the recognition that life is short and time together is finite.  They have learned to live in the present, this is both functional, given Geri’s cognitive changes, as well as a newly acquired appreciation of the pleasures of living in the moment, as she explains about bird watching:  “With her birds, there was no need to scrabble for the right word.  She didn’t have to talk to the birds, just observe their generous beauty.” For Geri and her husband, Alzheimer’s has given them the opportunity to open themselves to better, more honest ways of being together.

Part of Geri’s positive re-invention is her participating in a support group milieu for other people experiencing cognitive changes.  Also in her new Alzheimer’s persona, Geri begins striking up conversations with strangers.  Is this her intentionally re-inventing herself, experiencing a new sense of open-ness and willingness to engage with people for whom she didn’t have time before?  Is she looking at the world in a new way?   Or has she lost some filters and is less able to interpret social relationships and situations?  Has her judgment about appropriate behavior been effected?  Might this be a harbinger of problems to come?  Will she recognize dangerous situations or people who might want to take advantage of her?

Though there has been much culture change in the world of dementia and Geri’s story strikes many optimistic notes, I was struck by some ironies I perceived in the piece.  So much of the language the author uses is negative – her usage of metaphors to describe the diagnosis of AD as an “earthquake,” or that is has “thundering implications,” and the “undertow” of her daily life.  Doesn’t this just incite fear and worry?  The irony here is that Geri and her family have made adjustments and are learning to live with this new reality, without being pulled down into the pessimistic “undertow.”

I also found it somewhat ironic that as much as Geri fights not to be defined by her diagnosis, ultimately the role she assumes as advocate of those in the early stages and to bring Alzheimer’s out of the shadows, is where she lands and defines herself – as a person with Alzheimer’s.

This essay raises many questions and there is much more to consider.  End-of-life discussions or planning for the future are not really explored.  The fact that Geri has made a very clear decision that she will not end her life early and is extremely articulate about it, requires much further discussion in light of the recent media attention on those who have chosen that path.   And planning for the future is barely raised.  One wonders if this is an effort at remaining optimistic and hopeful as she participates in a clinical drug trail?  Or just trying to remain in the moment.

There is tremendous hope expressed here in Geri’s ability to bring an in-depth and dynamic look at a disease diagnosis that indeed has multiple consequences for family and society.  She is to be commended for being a strong advocate.

Thank you Geri.