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Adjusting to ambiguous loss a lasting trouble

18 December 2009
Bonnie Sandler S.W., The Senior Times - December 2009

We feel “ambiguous loss” for people who are physically present but psychologically absent. You might feel this way for someone who is in a coma, or someone who has Alzheimer’s.

They remain family members, but in an altered state; they are no longer the people they once were. Unlike in the case of the death of a loved one, there is no closure and there are no rituals to follow. You, their loved one, are left in a state of confusion, dealing with a physical body and an absent mind. Families dealing with such loss are often overwhelmed.

Because there is no death, there is no opportunity to say goodbye, and support systems often fall by the wayside. Friends and families may be uncomfortable with the situation and unsure how to respond. This results in fragile families who don’t receive much-needed social support. Many of these ambiguous losses last for years and leave families in a state of perpetual grief. Friends and family do not know how to deal with life cycle events. Does one call on the birthday of someone with dementia? What about a couple’s wedding anniversary? The worlds of families dealing with Alzheimer’s begin to shrink, leading to their isolation.

Different family members will respond differently to the introduction of Alzheimer’s into the lives of their loved ones. Some will be in denial, some will feel shame and want to keep the disease a secret, adding greater stress to the family, while others will readily educate themselves and seek support.

In dealing with Alzheimer’s, families have the added burden of the stigma. They are often unwilling to share their intimate stories with those in their social circle, and end up withdrawing from a potential source of support. The person with the disease undergoes traumatic changes that in turn affect each member of their familial and social network.

Reactions to psycho-social loss may include guilt and depression. Anger is a common side effect when dealing with Alzheimer’s in the family. Disappointment with non-supportive friends turns to anger that can be directed at the affected person. Another cause of frustration is the false belief that people with Alzheimer’s have the ability to control their own behaviour. In later stages, caregivers can become exhausted and angry, feeling that they have lost much of their own lives in the years of caring for someone who is emotionally absent.

In the case of a spouse of a person with dementia, the role and definition of “spouse” becomes unclear. How can you be married if your spouse no longer knows your name, no longer recognizes you and can no longer fulfill any of the responsibilities one associates with being a husband or wife? If you find yourself wanting to find companionship with someone else, you may feel confused and guilty. This confusion is likely to spread, as friends may not know how to react to someone who is technically married yet begins a relationship with a new person. Support can be sparse in such a case, as people may be quick to judge you as disloyal since your spouse is still alive.

Support groups can help people in such situations deal with the adjustments they will have to make because of the profound losses presented to them on a daily basis.

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Bonnie Sandler

Residential Real Estate Broker, Housing Consultant for Seniors

514 497-3775