Fluctuating Cognition: A Setup or a Gift

Donna is fairly new to the LBD journey. Her husband, Albert, was diagnosed with mild Lewy body dementia a year ago. There was an initial disbelief over the diagnosis, but once she and Albert and their two grown daughters accepted that they were on this journey, it wasn’t so bad. In fact, Donna said, “It was really a little easier. Now I understood why Al had such a problem doing things he’d done for years, like putting away his clothes properly.”

But then, as it does with everyone eventually, Lewy got worse. Al began having delusions and accused Donna of stealing his money. When he got physical, Donna became frightened and called his doctor who admitted him to a psychiatric hospital. Not the best choice for someone with LBD, but at least they were apparently aware of Lewy’s drug issues and didn’t try to calm him with antipsychotic drugs.  And Donna was assured that Al, a veteran, was eligible for Long Term Care benefits. She applied immediately.

Two weeks later, Donna was pleased to hear that her application was “one step away from acceptance.” By then, Al’s delusions had stopped and he began campaigning to go home.  Since he seemed to be his old, mild self, the doctor complied after a few days. Donna was ecstatic! “He’s so much better—why, we even uh, did it, last night. That’s not happened for so long it’s a wonder I remembered how!”

And then, Al was delusional again. This time he thought Donna was a nurse in bed with him—but still after his money. This is when Donna showed up at a local support group, devastated. She told the members, “I thought he was well. But now, he’s just as bad as he ever was—No, he’s worse. He didn’t even know me!”

Fluctuating cognition (see our May 25 blog) can be a terrible setup for the new LBD caregiver like Donna. If you believe, like Donna did, that the Lewy rollercoaster isn’t going to go back down, that the “recovery” is going to be permanent, you will be horribly disappointed when your loved one starts acting out again. The more experienced LBD caregiver accepts the gift and enjoys this “time out” with her loved one, making the most of it while it lasts. But she knows it is temporary and although of course, she’s sorry to see this time of awareness end, she isn’t surprised.

The story doesn’t end there. Al went back into the hospital but now Donna was told that he was no longer eligible for VA long term care benefits…he had recovered and didn’t qualify anymore. She’d have to reapply! Again, the people who needed to know—the doctor, the facility, even the VA—weren’t aware of Lewy’s fluctuations.  

October is Lewy Awareness month. It’s almost over for another year, but the need continues. The list of people who need to know is long…family members, doctors, nurses, hospices, VA officials, and many more. We need to extend Lewy Awareness to all year long, not just for one month. And we need to focus on things like cognitive fluctuations as well as the drug problems which, although very serious, are not the only way that our loved ones get short changed or even damaged by lack of knowledge in the medical community.