One way that LBD differs from other dementias, is the occasional window of clarity, where our loved ones return from their journey into the confusion of LBD and appear to be very similar to their old selves…alert, verbal, charming, compassionate, humorous, knowledgeable. We all look forward to these times, glory in them when they arrive and mourn for them when they leave—usually without warning and far too soon. In A Caregiver’s Guide to Lewy Body Dementia, a poem by Lynn Davis says it all:
An Old Flame
Yesterday I had a chance encounter
With an old flame.
He was every bit as charming as I remember,
And I was so glad to see him.
We had dinner together and talked
About everything and nothing at all.
It made me feel young again
And yes, I even flirted a little.
It was just so nice
To spend an evening being “normal.”
I don’t recall exactly when he left.
I just looked up and John was gone
And Lewy had returned.
But there’s a flip side. It’s called “Showtime.” That’s when our loved ones are alert in the presence of someone other than ourselves…often someone that really needs to see them the way they usually are. Over and over we hear the story of LBD silenced loved ones shuffling up to the doctor’s office, barely able to walk. Then as soon as they see the doctor, their posture improves, the shuffling becomes a walk and they start talking in full, clear sentences. A Lewy-savvy doctor understands Showtime and plans for it. An initial visit should last long enough to give the Showtime a chance to disappear—a couple of hours or so. Some doctors ask for daily emails that go in the chart and show an ongoing record of behavior. Others may ask you to keep a daily journal and bring it with you.
And there are the family visits. On one hand, it is wonderful that the family—and the caregiver as well—can enjoy your loved one at his best. However, if you have been telling family about problems, asking for help, or even considering residential placement, they may think you are over-reacting. “He doesn’t seem that bad to me,” is the understandable response.
There’s the grown child who prefers not to entertain the idea that their parent might have a disorder like LBD. They see the Showtime and ignore anything else. “Dad’s slowing down some, but he looks all right to me,” they say. Again, time may be the answer. Ask that family plan longer visits; long enough to outlast the Showtime. Caregivers have also used audio recorders or video cameras to record their loved one’s behaviors for unbelieving family—and the doctors too.
Blended families can be even trickier. A grown step-child may blame the step-parent. “Dad’s fine. If he’s worse when we aren’t here, then it’s obvious that my stepmother is the one causing the trouble.” I just finished reading Going Mad, by Carol Pendergrass. This is the ultimate horror story of LBD and a blended family. Whether you have a blended family or not, read it and be sure to take all the legal steps she recommends—early in your LBD journey.
When fluctuating cognition and delusions combine, life gets even more surreal. Remember, delusions are your loved one’s worst fears—seen by them as fact. (See my March 21st and April 21st blogs.) Harry tells his grown son, Clay, that his wife of ten years is trying to poison him because she has a lover. Harry has never been one to make things up and except that he seems genuinely frightened, he is acting normal—asking about the grandchildren, Clay’s wife, etc. And so why wouldn’t Clay believe him? Oh, yes, there’s that diagnosis of Lewy body dementia—but that’s a lot of b.s. anyway—probably something else his stepmother has made up. The answer here is to somehow educate Harry about LBD and get him to believe that he can help his father more by decreasing the stress in his life than by adding to the drama. If you have a Lewy-savvy doctor, family office visits might help. Harry will probably be more able to accept the doctor’s words than his step-mother's—especially if some hope and suggestions for things that Harry can do to help come with it.
And that’s the bottom line: education. The more Lewy-savvy your doctor is, and the more Lewy-savvy your family is, the less stressed your loved one will be. And lower stress means more Good Times for all of you to enjoy.