How do I cope when someone I love has dementia? - Ask the Experts

by Vicki Rackner MD

Jen had that tired, overwhelmed look I see so often in the faces of well-intentioned souls caring for loved ones with dementia. She asked, "If you could tell me just one thing about taking care of Mom --or what's left of Mom after several years with Alzheimer's-- what would it be?"

I answered. "Your mom and other people with dementia may not be suffering."

One woman's story has transformed the way I look at people with injured brains.

Jill Bolte Taylor PhD was a brain scientist working at Harvard when, on Dec 10, 1996 her life changed forever. An abnormal blood vessel in her brain ruptured, causing her to have a rare kind of stroke. She lost the ability to walk, talk, read write or remember any of the details of her life. When all the damage had been done, she experienced the world as an infant does. She invested over seven years of hard work healing her injured brain so she could offer a first hand account of what it's like to lose your past.

Here's the big surprise. Jill says life without a past was not painful. In fact, she experienced an expansive vitality. Yes, she lost the memories of how to do calculus, but she also lost the memories of the dark chapters that filled her with remorse. She describes being enveloped in a deep inner peace.

Here's the part that is even more surprising. Even when Jill was in her infant-like state unable to understand language, she could feel the intention of each person who came to her bedside. She could tell who cared about her as a person and who was just checking on an IV. She knew who was telling the truth and who was lying. She knew who was treating her with respect and who was not.

Jill's brain injury was different than the brain changes in Alzheimer's patients. Still, Jill's story offers the possibility that patients who have lost their memories are living in great peace.

Caring for someone you love with dementia is hard work. A sad man said, "You know I have been married to my wife for 57 years. Some of my friends wake up one day and their wives are just gone. I lose a little peace of my wife every day. It's so hard for me. The hardest part, though is when I think about what it’s like for her."

I told this sad man Jill's story. He said, "Some days my wife doesn't even remember who I am. But when I say to her, 'I love you' she says 'I love you' back. Maybe that's the only thing that really needs to be said. I made a promise to love honor and protect her, and I intend to make good on that promise."

After a moment of thought, he continued, "I would do anything for my wife. I can bear my pain if I know that she is not in pain. Thank you."

You can hear Jill tell her story here or read her book My Stroke of Insight.

About Dr. Vicki

Vicki Rackner, MD is a board-certified surgeon and clinical faculty member at the University of Washington School of Medicine. She left the operating room to be on the cutting edge of healthcare consumerism. She is now a full-time patient advocate, helping people get the health care they want, need and deserve. Dr. Vicki is an author, speaker and consultant.