Understanding Lewy Body Dementia takes a few readings. I’ve met two types of people with regard to this disease; those who know exactly what it is and those who have no clue. Everyone knows what a heart attack is, even if they don’t know someone who’s had one. But this one is different. It sounds weird, looks like two other diseases, and gets shoved into the same closet as Alzheimer’s.
A good place to start is at the Lewy Body Dementia Association’s web site. They give a great overview of the disease and its effects.
The symptoms can be pretty harrowing to read, not to mention experience. If you’re lucky it happens gradually, like it did with my father. At least we felt his progression was gradual.
The most observable symptoms of LBD are:
- Progressive dementia
- Cognitive decline
- Delusional moments
- Hallucinations
- Tremors
Dad started with his tremors, which isn’t always how it goes. For some the paranoia comes first with tremors later. For others it’s the hallucinations. But all experience the progressive loss of cognition. It becomes a disease of management.
Don’t get me wrong; Dad was pretty self sufficient for someone suffering from this disease. He could manage his own personal needs, though operating cooking equipment became nearly impossible by 2013. He’d invariably burn whatever he was cooking, or walk away while cooking it and forget what he was doing. His aphasia was easy to hide by not talking much. He could find his way to places for a while, but the GPS was probably helping him out.
Dad’s keys were taken at the start of 2013, which was hard. I know this situation is one many families dread. A father is often seen as an immutable force in the home, immune to criticism and weakness. Taking the keys is a form of emasculation and the children are loath to do it. We fussed over it for nearly a month before asking him to stop driving. His anger was evident, but with the help of his mostly ambivalent neurologist we got through it. My father asked when do you know you should stop driving. “When you’re family tells you it’s time,” was the response. This was one of the few times we got what we needed from the guy.
That started my weekly trips to pick him up and bring him home for a sleepover. Not only did this provide my brother a period of respite, it gave my father something to look forward to each week. I’d work from home those days and he’d watch TV while I took calls. We accepted the fact that sometimes you take the keys and it gets harder on everyone. It was always a struggle to manage his desire to go out with the need to stay in and recharge.
When he admitted one day he saw creatures dancing on the edge of his glass, we knew something was different. This new introduction to the disease took us by surprise, but you don’t really think about it unless you experience it. The appearance was blamed on the medicines taken for the tremors. Those medicines tend to cause visual artifacts, which seemed to take the form of dragonflies and fuzzy balls. Dad would say he knew they weren’t there, but it’s hard to eat something when you can even feel them in the food.
So we took another medicine to combat the hallucinations, but that caused excessive drooling. The dance of the pills took us on a five month ride trying to balance each medicine against the other, looking for relief from shaking versus the confusion of the hallucinations. The feeling in his mouth was hard for him. Eating is one of the final pleasures for the aging and Dad was no exception. To lose the ability to enjoy a meal because it felt like it had shards of glass in it was hard.
But these symptoms and reactions don’t always last. They come and go with time and his waned as we approached summer. The lethargy increased, though. I’d find him slumped down on the sofa, eyes glassy or his head tipped over to one side. If I spoke to him he’d get up and ready to go, but constant sleepiness. He no longer spoke unless prompted, but he still had a good deal of understanding going on. Complex situations were a mystery to him, but you could muddle your way through until he understood what was going on. I think he ended up being satisfied you were handling it.
Trust is a vital part of managing with LBD. As long as you have it from your loved one, you can do many hard things. Once they lose that trust, or enter into a delusional state, you’re battling something new, something you’ve never encountered. You have to prepare yourself for the moment that will inevitably come when your loved one as you knew them is gone. It might be temporary or worse, but it will happen. Ours was a bout of delirium that fortunately waned enough for him to trust us again, but some lose their loved one forever.
I’ve read where a spouse no longer trusts a wife, becomes convinced she intends to kill him. One thinks there are two versions of her son, one that watches her during the day and the one who comes home at night. Worse is when they forget you all together.
These symptoms come and go, but each time the person is diminished, if only a little. They call it the roller coaster because of this pattern. Unlike regular dementia, LBD throws in some spices to the soup that can turn a forgotten password issue into a conspiracy to rob bank funds.
Through the months from January to August he fell at a steady pace from reasonably capable of doing most chores to a sleepy, groggy, cranky zombie. The night before he fell ill we had a terrible visit to a local pizzeria. His meal was unacceptable and I knew he was unhappy. We all were. But we trudged through it. If only I’d known that was the last time I’d see him half way normal.
My father is 72 as of 2013. He could have enjoyed another decade of active living, but LBD took that from him. He’s falling to the floor as if in slow-motion while my brother and I cradle his body. The impact is coming, the blow hopefully gentle, and from there we’ll see.