Lewy Body Disease - A Particularly Cruel Killer

My mother, as I've mentioned, suffers with LBD. She lives in a nursing home atop a hill overlooking the lake about 1/3 mi. from my home (as the crow flies) - a 4-minute drive. I am her guardian although my sister and I share responsibilities.

There are websites that describe the nightmare of LBD, but so far I haven't found any single site that can tell the whole story. The best, most complete information that I've had access to comes from a combination of the Lewy Body Dementia Association site, and the caregivers - those of us who have lived with, or are living with, or are personally living the disease - in the LBDCaregivers yahoogroup, where they have also amassed an incredible amount of information in their files. There are numerous PDF files available here as well, although I haven't read them all, and so I can't verify the reliability of all that is there. But it is a repository of sorts, of files pertaining to the disease.

The symptoms and signs of this disease are quite varied, from wildly erratic blood pressure to terrifying hallucinations and delusions that are just as real to the sufferer as the computer on which you are reading this is to you. Another hallmark is fluctuating cognition; whereas other types of dementia commonly lead to a continual downward trend in cognition, LBD victims will have periods of near-normalcy that may last hours, days or even weeks (especially early in the disease), alternating with diminished congnition. They are even able to "showtime" - or seemingly turn off the behaviors - for short periods of time, usually to impress those outside of their immediate sphere that there is nothing wrong with them, or to function in a public setting, although this is not a willful act - ie, my mother can't turn it on and off "at will" but she can function more highly while in public, for example. She has no conscious control of this however. Many LBDers show periods of lucidity right up into their final days.

My mother has many of the common traits: the fluctuating cognition, hallucinations and delusions, constantly running nose, loss of her sense of smell (and therefore taste), aversion to bathing (although this is actually more common with other dementias), paranoia, blue toes, erratic blood pressure/falling, extreme, severe reactions to neuroleptic drugs, "showtiming", REM disorder, etc. She doesn't yet show parkinsonism, although 20% of LBDers never do.

My mother's symptoms are managed fairly well by a finely-tuned mix of medications. In an LBDer even the tiniest change in meds can have a huge effect, so her meds are adjusted periodically at a psych facility. (And, it cannot be noted often enough, many if not most of the commonly used drugs in treating dementias can have a harmful or even fatal affect on someone with LBD. This is why proper diagnosis is SO IMPORTANT, and treatment by a doctor familiar with LBD equally so. Unfortunately many doctors are unfamiliar, unaware, or unwilling, and can do great harm or worse to an LBD sufferer. We must be educated ourselves, if we have a loved one with dementia, so that we can protect and advocate for them.)

My mom spends the day with us on Sundays. We pick her up after church, and she helps me cook dinner, takes walks in the yard, plays with her "grandpuppies" and her year-old great-grandson, and just basically enjoys a day of normalcy every week. We do occasionally take her places during the week also, but she thrives on the routine and predictability of daily life at the nursing home. There is a definite decline in her status, as evidenced by increasing paranoia and confusion, when she is away too often or too long. And this has increased with time. Just a year ago we could take her places 3 times a week or more and she did fine. Now she begins getting agitated, worried, and more confused within hours of being away.

Her personality remains intact though, and she is still herself, even while talking about, or from within, the reality that exists only in her own mind. Her phrasing, gestures, and speech patterns are the same as they've always been; it's the words and the feeling behind them that is changing so drastically. She was diagnosed about 2 years ago, but in hindsight we now recognize that she was exhibiting symptoms for several years previous. Given that, I am thankful that we still have as much of her with us as we do. It's always in the back of my mind that she can start a rapid downward spiral at any time, and I treasure every minute that I have with her.

I will write more on this subject later. I haven't written as often about this as I'd originally intended, and I don't know why. Maybe it's all too close to the heart. But now I'm feeling a need to write more. And so I will...