Alzheimer’s Loss: fixating on the present

Dear Dr. Neimeyer,

I am providing emotional support to the family of an advanced Alzheimer’s patient who has been institutionalized for 5 years. The patient was a brilliant scientist, greatly loved and admired by his sister and three daughters.

As the scientist approaches death, his sister and daughters are troubled by the fact that their thoughts of him are fixated on his current condition. They cannot think or talk about their lives and experiences with him in the past. They suppress any thoughts or conversations about him, and wonder if they will ever be able to create a more balanced memory of him.

Do you have any suggestions for them, especially any reading material on this type of reaction to losing a loved one?

Linda D., LCSW

Dear Linda,

Sadly, the reaction you describe, in which positive memories of a loved one are overshadowed by the darker cloud of the circumstances of the death, is not uncommon.  It occurs with great frequency when the death is itself traumatic, as by violent means, but as this family’s experience testifies, it occurs as well even when the death is a natural one, anticipated by many months or years.  Indeed, the slow demise that characterizes an Alzheimer trajectory like this one may be even more insidious, installing vivid memories of a loved one’s gradual reduction of ability and personality over half a decade.  In such a case, the “dominant narrative” of the illness can eclipse for survivors the “preferred narrative” of the loved one’s special qualities and accomplishments, rendering them scarcely visible through the veil of anguishing memories.

Beyond the sheer vividness and primacy of the more traumatic memories are motivational factors, even if these are only half conscious.  That is, the attempt to recall the loved one brings with it painful contact with the dominant memories of this some person in advanced illness—leading to avoidance of memories of the loved one altogether.  Although this unintended reliance on avoidance coping is negatively reinforced by a reduction of grief in the present moment, the cost of this form of protection is high, effectively stealing from mourners the psychological as well as physical presence of the deceased.

Fortunately, there are several ways forward through this dilemma, though none of them is easy.  And just as you imply in your apt phrasing, this involves active attempts to “create a more balanced memory.”  One of these is commonplace—bravely stand up to the pain, and revisit cherished stories, photos, videos and mementos, in full recognition that initial instances of doing so are likely to bring tears that will only gradually be leavened by smiles and eventually, perhaps, laughter and pride.  To be most effective—as in approaching any other fearful situation—these chosen exposures to the memories should be long enough to engage the emotions associated with the remembered experiences or artifacts, and to promote some initial level of mastery of them, which usually requires 20-30 minutes.  Because this will initially be quite stressful, early “exposure trials” of this sort might be done in your office, where you can invite the clients to walk you slowly through a photo album, for example, as you inquire compassionately and with interest about the person and relationships behind the pictures, while also helping the clients “breath through” the experience, and modulate the strong emotions they evoke.

Another more ambitious approach would be to pursue a “legacy project” that honors the deceased—perhaps constructing a virtual memorial on the internet, preparing a family dinner that includes his favorite food, or taking a pilgrimage to a place that was special to him, any of which could naturally lead to sharing stories and memories, and reflecting on the indelible impact the loved one’s life had on friends and family—and in the case of this prominent scientist, the larger world.  Anything that honors that legacy helps sustain us in our grief, whereas anything that silences it wounds us further.

And finally, there are specialized therapeutic procedures that work specifically with our ongoing connection to the deceased, and seek to restore it in a healthy form.  These include various practices of visualization and imaginal dialogue that can directly work with our inner (and avoided) relation to the loved one, differentiating the person from the pain of his or her passing.  For a detailed case study that illustrates such work in an actual session of therapy, both you and your clients might like to read my chapter (among others) in the recent book by Dennis Klass and Edith Steffen entitled “Continuing Bonds in Bereavement,” published by Routledge.  Repeated experiences with clients like the family you describe have convinced me that a tense avoidance of memories is not the only option in dealing with the grief-saturated recollections of a loved one’s dying, and that with some guidance and courage, survivors can distinguish positive emotions regarding the loved one’s life from more painful memories associated with the death, ultimately embracing the former and grieving the latter.

Dr. Neimeyer

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