Dementia and ambiguous loss

Goodbye without Leaving

Dr. Pauline Boss has stated that dementia brings “an ambiguous loss (Type 2)” to the family, because the person is “there, but the person is no longer who they used to be”. As dementia progresses, the family is exposed to a great deal of stress as the entire relationship they had with that person changes, even though they are not clearly losing the person.

 

Taking care of a husband who is no longer a husband, or taking care of a mother who is no longer a mother, is no small feat. The chronic grief without a clear beginning or closure causes tremendous distress and anxiety, adding to the family’s stress beyond the caregiving issues.

 

Dr. Boss urges such families to first learn more about the “ambiguous loss” they are experiencing.

As dementia progresses day by day, back and forth, family members may experience loss over and over again, making it difficult for them to finalize their feelings, even though they try to. Though family members try to retain the same caregiving they did before, the relationship with the person with dementia gradually takes over.

It’s not the family’s fault that they feel anxious or hopeless. It’s the “ambiguous loss” that makes it so.

 

Don’t force yourself to shut down your feelings. It’s okay to respect your own honest feelings, such as “I’m sad,” “I don’t feel well,” or “I can’t do it anymore.” Instead of feeling “I have to do something about it,” try to find a renewed relationship with the person with dementia that responds to situational changes by maintaining a reasonable distance. Also, cherish the time you spend with the people who you feel are a source of emotional support for you.

 

Dr. Boss calls those who you want to be around like family “psychological family”. It’s about finding a “new form of family” by not sticking to the traditional form of family, but shifting into such a way of life that fits the current situation.