Wednesday, October 12, 2011

Dealing With 'Lewy'

I decided it is time to blog a little about Lewy Body Dementia. We prefer to call it LBD or Lewy because who wants to hear the word dementia?

I have a new respect for the word dementia. It gets a bad rap! I think of dementia as not being in right mind. But really the one we are dealing with my dad is fully aware. He has moments when he might forget where he was going, but SO DO I. He has momentary glitch in where was that bathroom. His short term memory doesn't function well but ask him about a drought in the 60's and he can tell you everything. Ask him about working at Kroger or years he lead a Tupperware distributorship and he can recall detail after detail. Watch Top Shots and he can tell you about the guns he has owned or the ammo he has shot. Mention the times he sat behind the wheel of a boat pulling friend after friend...he'll just snicker! There are no words for all the sunburns he endured!

Dementia is actually a lack or serious decrease in two or more cognitive abilities. Limited mental functions or skills that we use to perceive, think, remember, communicate, and control our impulses. We often use two or more of these skills at the same time. (Here lies the problem with dad. He can no longer these things are limited for him from time to time.)

He hears everything even when it appears he is asleep. He can comprehend a great deal more than he can communicate back. (To hear and communicate back means you have to 'think' while 'listening'...multitask!) We just have to remember he will be very slow at responding if at all. We are learning how to create conversations that keep him engaged even when we might not get a response. (You know...its a lot like little ones...they hear far more than they can communicate back.)

We first thought he was dealing with Parkinson's and now we are aware he is dealing with Lewy as it has the ability to mimic Parkinson's (affects his movements). It is worth the effort to invest into research if you are caring for a loved one. Through our research we discovered that we probably were missing something with my dad and thankfully we have now filled in some holes.

Lewy is a strange dementia as it is not like Alzheimer's that has a steady decline. Lewy is a steady decline with highs and lows along the way! His can fluctuate from week to week, day to day, or minute to minute. It makes it unique for the caregiver as you have times when you think all is well to then find times when you wonder what happened. It is always changing! There are good times, bad times, and showtimes.

Good times: Periods of greater awareness and will become less frequent and shorter in duration as time progresses.
Bad times: Start as isolated incidents but eventually become the norm
Showtimes: Periods when a person involuntarily appears much more aware than usual.
Showtimes are fun in that we see glimpses of my dad! His full grin and warm acceptance of the one he is communicating. Those windows are the best! Its what we see at church or when he meets a new person. They would find it difficult to believe he is dealing with LBD. They see the movement issue but not the Lewy part.

A couple of things before I end my post today...our first sign he might have a problem was years ago when he began having active dreams. More on this in a later post, but active dreams are a warning sign years before LBD.
You should tell your doctor if you have active dreams as it is important information for him when prescribing medication or considering a surgery!

WHY is it important to know this? Because with LBD there are 'defining moments' of extreme stress, such as surgery, illness, or a severe reaction to certain medications may increase already present dementia symptoms. It can initiate dementia in someone who, up to that point, has apparently been dementia free. Therefore, anyone with active dreams should avoid optional surgeries and drugs that are considered dangerous for someone with LBD every bit as carefully as someone who already has dementia.

We are taking one day at a time. Enjoying dad while dealing with Lewy. Dancing a new dance and walking a new walk.

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