An Interview with Lauren Kessler

SallyWhite

Posted: Jul 13, 07 8:15am

TeeBeeDee Member Sally White and author Lauren Kessler have a deeply painful experience in common. Both lost a mother to Alzheimer's. To better understand the wider reality of living with this disease, Kessler decided to work as an unskilled assistant in an Alzheimer's care facility on the West Coast. From that experience, she wrote the newly released book, Dancing with Rose: Finding Life in the Land of Alzheimer's. TeeBeeDee invited Sally White to interview Lauren Kessler about her new book.

Click to read an excerpt from Dancing with Rose.

Sally White:

Do you think there are more cases of Alzheimer's because we're living longer, or do you think the numbers are high because there are all kinds of dementia that are now referred to as Alzheimer's?

Lauren Kessler:

There are obviously more people being diagnosed with Alzheimer's globally than ever before, and the first and best explanation is that people are living longer. Since most Alzheimer's is a disease of the elderly, people are surviving all kinds of other illnesses so they can get this illness. There are also a whole host of dementias—vascular, stroke-induced dementia, alcohol-induced dementia… If you don't get your diagnosis at a state-of-the-art kind of place, they could be calling something Alzheimer's when it's not.

Sally White:

What steps would you recommend once you get the diagnosis for a parent or a spouse, and where would you recommend that people get a diagnosis?

Lauren Kessler:

If your community has a gerontologist, that's where I would go. Ask them if they've been to any of the major Alzheimer's conferences where hundreds of physicians come together to share information.

A gerontologist is a good person to go to because so much of what is mistaken as the onset of Alzheimer's disease is the mishandling of medication. These days, older people are on a lot of medication. If they start to be fuzzy or have erratic behavior, I don't think somebody should think "Alzheimer's." Maybe we should bring all those bottles into a gerontologist—get a full work up first.

Sally White:

I want to ask you about managed care. What should we ask our lawmakers to do to prepare for the large number of Alzheimer's cases that are anticipated?

Lauren Kessler:

That's a tough one. When I first went into researching the book, I thought the best and most humane way to take care of people with memory loss was to keep them at home, with home health care people or a family member, and that the health care crisis was really a crisis in lack of family connections. However, having spent time with extraordinary families and a number of other [care facilities], I think at some point in the progress of the disease, it is actually the most loving and humane and safe thing to put people in a care facility. Depending on the care facility, they can have much more freedom of mobility. The place I worked at, you could walk through big, broad hallways, through a central atrium. Each unit had a closed patio. I thought it was terrific to watch people who needed to walk, because of anxiety or because they were wanderers, who needed to be in motion. If these people were home, the people taking care of them would always be worried that they would get out of the house. When you're at a good care facility, you have three shifts of people, compared to one shift of yourself or your daughter or your son in the home, which creates such weariness.

Sally White:

How do you recommend that people learn to see beyond the deficits of Alzheimer's, and learn to enjoy hanging out with their family member, as well as work through their grief?

Lauren Kessler:

You cannot see what someone is if you are not living in the present with them. We see what they aren't. We're absolutely consumed with what they aren't. Even as you're spending time with them, you are mourning that you're not spending the kind of time that you wish you could spend. That's pretty ridiculous. You're sabotaging any hope of having a meaningful connection. It's within your power not to do that. One thing is to take a deep breath and look at the person in front of you, whoever that person is. Just because, for example, that person doesn't recognize you, doesn't mean you shouldn't recognize them.

Sally White:

That's a great point. I know there were many friends of my mother's who said, "she has no idea who we are so we're not going to go visit her any more." And I never felt that was true.

Lauren Kessler:

The idea that all we are is the sum of our memories is so erroneous…and that was one of the biggest lessons I learned in doing the book. There is so much there: the personhood. So even if their memories go, they are still human beings capable of enjoying fragmentary moments. And you, the daughter or son, could be part of that enjoyment.

Sally White:

I know from my own experience that I just loved being with my mother and I thought we made connections.

Lauren Kessler:

I think it's hard to believe that you're making a connection when you're not talking to them. So I think that the act of sitting, touching, and music is very important. In the book I talk about how every afternoon we had to bake cookies (at the Alzheimer's care facility). Sometimes the cookies got eaten, but the point was how the place smelled, and you could see people walking around aimlessly…and you could see them catch a whiff, and see this look come across their face. There was life behind those eyes.

Click to read an excerpt from Dancing with Rose.

Learn more about Lauren Kessler.