Just over a month ago, I began a new job at an elder law firm. Our attorney works primarily with seniors and specializes in things like estate planning and guardianships. He’s the one you consult when it’s time to make those difficult decisions about what your end of life wishes may be and how you hope to have them carried out. Disheartening, I know, but also necessary and so, so important.

Coincidentally, these past few weeks I’ve learned a considerable amount about hospice and palliative care. Most interesting, in my opinion, have been experiences shared regarding reactions to one’s own impending death: just as an individual draws up documents to ensure their affairs are in order, you often find they’ll tie up loose personal ends, as well. An article in Clearly Caring Magazine points out:

“Admittedly, the dying often use a level of candor and boldness once they are given a few months to live. They use the time to mend fences, bury hatchets, heal family wounds, and bring closure to their brief time remaining on earth. Most speak with wonderful frankness; even the most silent become bold and courageous.”

Of course, loved ones are also affected and must likewise prepare for the impending loss. Together, they’ll frequently experience what is known as “anticipatory grief,” or the dread and emotional preparation felt prior to the actual death of the patient. Though it has been postulated that going through the stages of grief while someone is still alive may lessen its impact upon death, the entire experience can still be incredibly taxing and unbearably sad.. one you wouldn’t wish upon your worst enemy, especially not more than once.

People with dementia die twice. They gradually recede from their loved ones while still living, and their family loses the person they knew and loved slowly over time. Depending on the circumstances, they’re most likely unable to achieve that closure we so desperately crave toward end of life. At minimum, they’re not able to do so as effectively as someone whose cognition remains unimpaired. Don’t think for a second they don’t try, though. As our attorney must do to ensure that one’s most intimate concerns are outlined and understood, it is essential that you listen:

Naomi Feil, the originator of Validation Therapy, “believes that the healer’s job is to listen to the patient, to give speaking time to the patient, to not interrupt, to not correct, and to not be judgmental. Responding in this way validates the patient’s existence, which means that the healer must accept the world in which the patient is living. … The rationality behind the irrational, demented talk is that patients are “tying up loose ends” before death; they want to reconcile the events of their lives so that they can conclude that their lives made a difference, that the world is better because they were here. This can only happen if the healers give up their dominant positions and take the time to listen. The nonverbal time variable is key.”

They say hindsight is always 20/20. Looking back, I can recall several instances in which my loves were likely cleaning slates toward end of life. A favorite nonno was particularly inspiring, as he was so tender and affectionate toward his wife of nearly 60 years. He recounted memories with great lucidity, held her hand while they slept, and professed his love relentlessly (“You know I love you Rosie, right? You know how much I adore you?!”). When reflecting on her parents’ relationship, their daughter shared with me that her father was nothing like this before. In fact, he very rarely spoke about his feelings. I like to think that, despite his dementia, he was determined before he passed to make sure his sweetheart knew. Perhaps the most beautiful part of all, she listened to him (and she reciprocated).

2 thoughts on “Senti

  1. Beautifully written and shared, Christina. Your insight, knowledge and passion in this field is valuable to all who follow you. You have given food for thought… and… an understanding that many of us will need to realize. Thank you. Connie


  2. The act of silence and listening is so needed at this time or stage in the life of someone with dementia. I remember my mother would whisper that she loved me. And yet soon there after she stopped talking for good. When my father was in the latter stages, my sister would tell me he would mumble to himself. The day before he passed he became almost giddy. He was not a jovial man, by any means. We feel he was talking with Mom and telling her he was on his way. He passed the next day.
    Thank you for what you write. It helps me understand what they went through.


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