The test of a first-rate intelligence is the ability to hold two opposed ideas in the mind at the same time, and still retain the ability to function.    ~F. Scott Fitzgerald

Chapter one of Pauline Boss' new book, Loving Someone Who Has Dementia, begins with that quote.  Pauline (pictured) is one of NCFR's most decorated scholars.  She is one of our past Presidents and winner of the prestigious Burgess Award given for a lifetime of achievements in the field.  She is also a gifted clinician, and has authored much material for practitioners. Her latest gift, however, is written for families.

Pauline Boss is a pioneer in the subject of family stress and, in the 1970s, she began to notice a type of grief-frozen grief, she calls it-that families experienced when a loss is ambiguous.  The easiest way for me to explain it, is to have her explain it.  Watch this very short video:

This new book for families is just excellent.  I recommended it to a friend who is a caregiver for her mother who has Alzheimer's disease.  This friend knows I am a blogger and she specifically asked me to tell her story-particularly one aspect of her story.  My friend (let's call her Mary, which is not her real name) had had a good relationship with her mother throughout their lives.  When Mary got divorced, her mother was right there, helping her raise her three children when Mary's husband left her.  Every step of the way, Mary's mother was there to support her.  Mary remarried, and they had many good years of intergenerational family life. Then, gradually, Mary's mother's dementia began its onset.

Mary was able to keep her mother, a widow, at her own home with Mary dropping by for daily supervision. But very soon it was apparent that her mother needed more care. Mary and her husband then took her into their home for three years.  When that arrangement was not enough, they began to look for an appropriate long term situation and her mother moved into memory care a few months ago.  I knew the transition would be tough, because I'd heard for years how good Mary's mother was to her.  It had been Mary's original intent to care for her mother until her death.

Mary and I are close friends. Yet it was just a week or so ago that Mary finally told me what was absolutely eating her up inside-one of the reasons she placed her mother in out-of-home care is that she was afraid she would hurt her physically. When she told me, she just burst into tears.  She wants me to share her anonymous secret with the world. I don't know which was worse for her, the terror, the shame or the guilt-or all three.  She was afraid to tell anyone about her feelings. I told her about Pauline's book and how she absolutely must read it and soon. I told her that Pauline puts it all out there, including providing support for these frightening feelings and what to do with them.  If you have moments of self-doubt that you might hurt your loved one, it does not mean you are a monster.  It means you are overwhelmed to the danger zone. You need immediate help and Pauline tells you how to find it.

Mary is one of the most responsible, rational, and compassionate people I've ever known. Yet she got overwhelmed to her breaking point. I understood. One evening last winter, I sat with Mary's mother so that Mary and her husband could go out for the evening, which they literally had not done in years because one of them had to be at home at all times. Being with her mother was a precious experience for a family life educator who had never seen dementia up close.  All evening, in a 10 minute loop, she politely asked me who I was and I reintroduced myself.  Then she would ask me where Mary was, and I told her. Then she would stare off into space and the loop began again with "I'm afraid we haven't met... what is your name?"  After cycling through several loops, I began to realize what incredible strength Mary had to cope with three years of that level of caregiving.  Her mother was "there, but not there," as Pauline explains. 

Mary thinks she's failed. I predict that assessment will fade in time. I urged her to look at herself the way I do. She has the patience of a saint and this is the first time in years that she's come up for air. Mary was caught in frozen grief and, now that her mother is safely out of the home, she is allowing all this grief to surface. 

There are many resources in our field, many written by Dr. Boss, that are for the helpers. This book is for the caregiver.  It's written in accessible language and is divided into manageable chapters that facilitate reading in the catch-as-catch-can way that caregivers often need.  If you're a caregiver of someone who has dementia, this book will wrap its words around you and give you a hug.

Loving Someone Who Has Dementia (Jossey-Bass, 2011) is available in both paperback and e-book.