today with

[Guest guest]

We'd told my mom we would take her out for lunch today to Coyle's, which has

long been her favorite restaurant. When we picked her up she seemed a

little confused but happy and in a good mood and had forgotten about going

out - but it was only 10:30 and her mornings are usually the worst part of

her day, lucidity-wise, so we figured it would get better. We came back

here for an hour or so and she was a little more " befuddled " than usual but

answered questions appropriately and could be brought into the moment with

direct conversation and a little effort. We ate and had a nice time;

Coyle's is a buffet and she got what she wanted, got her coffee refills and

conversed appropriately with the waitress, and so forth...then I had to drop

Pete off at work and she seemed a little more confused...stopped at KMart on

the way back here and she was asking very strange questions.

We spent the rest of the afternoon here, she did some dishes and played with

the dogs and played my keyboard - the usual stuff, but her mind was in a

strange place. She would ask questions that took bits and pieces from her

life that were totally unrelated, but she was putting together. ie, " I told

(her live-in friend for the last 10 years) to go to Garden City (the

town where I grew up - we left there 30 years ago) and look for Jeanie

('s daughter) because she's pregnant (she's not but my daughter is) and

Pete (my husband) went to look for because thinks I'm a witch,

where do you think is? " would be a typical question - and there were

many variations on that theme as well as other themes but they all took

different facts from her life and mixed them up with delusions, or

attributed them to other people or places. As I was going about my business

and she was talking/asking, I'd ask her things like, " And when did this

happen? " or " What was next? " or " And what do you think about that? "

depending on what was appropriate.

However, the strangest thing was that her entire day was a sense of deja vu.

EVERYTHING she saw, everything I did, everything that happened, she got an

amazed look on her face and said, " I just dreamed that! " or something

similar. It was like her brain was a split second behind reality, which is

what " they " say causes the deja vu sensation, but it continued all day long.

I found that very interesting and haven't remembered it being mentioned here

in the group before - has anyone else experienced this with their loved one?

She did " space out " quite often also, staring and not responding when I

spoke to her, but it always lasted less than a minute. And, throughout all

of it, she would also answer questions appropriately and was aware of her

surroundings, likes, dislikes, my dogs' names, and so forth. But when I'd

stop deliberately drawing her into the present with my conversation, she'd

slip right back into what I described above.

Just 2 days ago she seemed as perfectly normal as I am which is her usual

state and leads most people to wonder why she's even in a nursing home.

Unless one knew her and the reality of her life, the things she says would

seem perfectly believable, her demeanor and dress and makeup and

conversation all totally normal, and the things she says make sense as well

unless you know that they aren't true . (It is because of her and the

courteous visitors to King's that there are now signs on the doors NOT to

hold the door open for anyone else because " some residents " - she's the only

one - appear to be more like visitors than residents.)

She's aware that her confusions and moods are caused by " the Lewy's; " in

fact, I can ask her, " Is that you speaking or the Lewy's? " and she'll tell

me and she's usually right. She doesn't know that it's progressive and

fatal though, she just understands that her confusion and occasional

agitation comes and goes with the " moods " of the Lewy's.

Anyway, it was a strange day in that usually when she's confused I take her

back home but today I didn't, because it was easy to pull her mind into the

present and into cognition, if only briefly, and because I was rather

fascinated (as well as saddened) by the continual deja vu! I'd have kept

her here longer but a sudden sense of emotional and mental and physical

exhaustion set in at about 4:00 and I realized that I was internalizing too

much of it. When she came over and put her arms around me and leaned on me

and said, " Oh Sher, what am I going to do now? " I nearly lost it...and as I

reassured her that WE are going to keep strong and keep going and keep doing

it together, I realized that I had to take her back and pull myself

together. I can't even imagine how 24/7 caregivers get through their

days...I have an incredible amount of respect for you that are doing it!

I am happy to have had this day with her, to get a little glimpse into how

her mind was working, and to have the chance to listen to her and answer her

questions for the entire afternoon. Usually when we're together she's a

little forgetful but pretty normal, makes and understands jokes, carries on

conversations, and is more or less still my mom. This was a first, and it

was exhausting for reasons I don't understand and fascinating and very sad

and guilt-inducing (?!?!?) all at the same time.

Another new Lewy experience for us, I guess?

His,

Sherry

www.owly.net

daughter of , (mis?)diagnosed with AD in 2005, descent slowed by

Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my

house. We're learning to live with Lewy...