[by Joanne Reynolds] If you are a caregiver to a loved one who is suffering from dementia, you are experiencing something psychologists call ambiguous loss. It’s a particular form of grief that centers on the fact that you’ve lost the person you know and love as their personalities, memories and ability to function are overtaken by their dementia. It is a particularly painful form of loss because they are still living and you are with them constantly, but they are increasingly gone from you.
When someone we love dies, we grieve their departure. We miss them. Their deaths become a dividing line in our lives. We date our personal calendars by the events that happened before their deaths and the things that occur after. “Mom was still alive, so I think that it must have been in 1974,” I might say.
In ambiguous loss, there is no dividing line, no clean break, just the on-going, day-to-day disappearance of your loved one as their brains function less and less. They are here and gone at the same time.
“Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s” is a new book, a very personal story of one man’s journey as a caregiver to a wife with Early Onset Alzheimer’s Disease. I highly recommend it for dementia caregivers simply because it’s an honest account of how ambiguous loss works in real life. CBS News correspondent Barry Petersen tells a compelling, but sadly familiar story in this very readable book.
“Jan’s Story” is also a crystal clear example of how Caregiver Mentality works by keeping a stressed-out caregiver from caring for himself while he focuses exclusively on the needs of his ill wife. Only as his health and emotional well-being are about to collapse does he begin—faltering at first—to care for himself in order to be able to care for his wife. He’s quite clear that his skewed thinking (Caregiver Mentality is the name I give it) nearly killed him. Did you know that one four-year study of sole caregivers to dementia patients revealed a mortality rate 63% higher than non-caregivers of the same age? He quotes that study and others as well to reinforce the need for caregivers to make self-care as high a priority as care of their loved ones.
There are other surprising and terribly honest revelations in Petersen’s book. I’ll just tell you to get it and read it. Keep it on the shelf next to the “dementia caregiver’s Bible,” “The 36-hour Day,” by Nancy Mace and Peter Rabins. If you haven’t read that one yet, be sure to get it and read it, too.