It was 4am before Mary Ann finally went to sleep last night.  The hallucinations were vivid and constant.  The family of people and the raccoons were present much of the time, one or the other.  On two occasions I asked her whom she was talking to.  Once her answer was the raccoon; the other time it was the little girl (blue-eyed).  Today in what sounded like a lucid moment, she asked me if I was ever going to tell her about that family.  Needless to say, all I could do was respond that she would have to tell me about them, since she was the only one who could see them.

I have been going to bed early (for me) the last three nights in hopes that my presence in the bedroom might reassure her and allow her to settle.  She was restless all three nights for much of the night.  Last night it was constant until that 4am time.  She was up and moving and talking and shuffling around.  At one point, I turned on the bright overhead light with four 60watt bulbs and left it on for an hour or two in hopes that the hallucinations would be diminished by the visibility.  It did not work.  The light just made it harder to sleep.

What is an odd dimension to this time is that at least three people who have spent time with or talked with Mary Ann in the last few days have commented on how lucid and communicative she has been, more so than usual.  It makes no sense!  She is wasted, but more lucid at times.  When we are alone she is often so tired that she can hardly hold her head up, she often struggles to track interactions at all.

What makes this a little easier to deal with is the fact that what we are experiencing is not different from what many in the online spouses of those with Lewy Body Dementia.  Others in that group share often that their Loved Ones see and talk with people who are not there.  The group members refer to the lucidity with others as “showtime.”  Many of those Caregivers have to deal with others only seeing their Loved Ones when they seem very lucid.

One of my Brothers phoned to tell us of a tragic death in the extended family.  Mary Ann took the call.  She was apparently very communicative.  After the call she shared what had happened with the Volunteer.  When I returned home she shared with me what had happened.  I phoned my Brother and discovered that the death was of a different family member.  That sort of misunderstanding can certainly happen.  That kind of confusion in tracking what has been said is not unusual any longer.  When a good friend had told both of us about her daughter being pregnant, Mary Ann was convinced that her young Granddaughter was the one who had become pregnant.

What is, of course, a consequence of the sleeples nights is that not only do Mary Ann’s hallucinations get worse, but my stamina wanes and we shift from creating a good quality of life to survival mode, just getting by.  Today was a busy day, Mary Ann’s morning Bible Study had the first meeting for the fall, we had appointments for haircuts for both of us, we had an appointment at the cemetary, and a Volunteer came for the evening.  She did manage to get a couple of hours of sleep in before supper.  On the monitor, she appears to be restless again.  I am not sure I am up to another sleepless night.

The last couple of evenings Volunteers have been with Mary Ann so that I could head up to the spot with the view.  There were a number of deer to be seen, including a buck with a six or more point rack.  There were lots of bats and a few nighthawks.  I enjoy watching them.  I did a little reading — hard to do when sleep deprived (thank goodness for caffeine), and I listened to some music.

For a week Mary Ann has been taking a slightly larger dose of Seroquel which is supposed to control the hallucinations and help her sleep.  So far, the opposite has been so.  I will give it another few days, and if there is no improvement, I will increase the dosage by another increment suggested as an option by her Neurologist.  If that doesn’t work, I will fax the details of her status to the Neurologist with a request for other options that might have a chance of improving our quality of life.

As I mentioned in an email to my Brother, life is not for sissies!

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