How Do You Say Good-bye?

In her book, Ambiguous Loss, Learning to Live with Unresolved Grief, Pauline Boss writes about the emotional complications that occur when family members are attempting to deal with an ambiguous loss, i.e. a loss that is unclear because the person in question is perceived as either physically absent but psychologically present, or as with persons with dementia, the person is perceived as physically present but psychologically absent. It is this ambiguity of absence and presence that often adds to the stress of caring for a person with dementia. It is this ambiguity of absence and presence that causes the grieving process to begin long before the death of a person with dementia. It causes what Pauline Boss calls “frozen grief.”

How then do you say good-by to the person with dementia as he/she was before losing his/her ability to remember, to reason, and to focus while at the same time staying in the present and relating to this person as fully as possible? Clearly the nature of the relationship prior to the onset of dementia is extremely important, but even under the best of circumstances, the emotional complexity of the losses makes this process an extremely challenging one. How do you make sense of and eventually make peace with the contradictory and often taboo feelings that are part of this process of anticipatory grieving? Having a forum where these feelings can be expressed and understood is extremely important. This can occur in a support group, in individual or family counseling or in the context of a meaningful religious/spiritual practice. Often it is useful to have more than one forum in which to work on this.

What one hopes to get from expressing and understanding the feelings associated with the process of anticipatory grieving is an increased capacity to accept and to cope with the emotional roller coaster ride that these feelings produce. This is often as or more challenging than the tasks of physically caring for a person who is losing cognitive capacity. It is not uncommon for long time caregivers to have to remove themselves from the day to day life of their family members with dementia in order to preserve themselves physically, emotionally and spiritually. This is often something that other caregivers can understand in a way that others cannot. The potential for dangerously high stress levels is great if caregivers are too isolated and feel as if they have no choice but to ignore the signs of caregiver meltdown.

If one thinks about what it takes to recognize and deal with “frozen grief,” one can only say that any loosening or unfreezing that can be achieved is a step in the direction of healing. Acknowledging that each layer of loss is different and that each person’s history with previous losses has its part to play, one can only be encouraged to be as honest and open about the variety of feelings that are evoked. This is difficult emotional terrain, and all attempts to navigate it are to be honored and respected.

With all of this being said about good-bys, I, too, am saying good-by. I am retiring from my position at the Alzheimer’s Association and this will be my last Ask Reva column. I will miss the work and writing about it in this column. This column has given me a voice in which to express what I have come to understand in my seven years here, and I appreciate having had the opportunity to do this. My colleague, Janet Mitchell, will be writing a column that will come from the concerns and issues that come to us via the Helpline.

— Reva Hoffman, LCSW
Director, Clinical Services

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