The Domino Effect is just beginning to lean away from the good days we have been having.  Last night Mary Ann did not sleep as well as she has the last ten days or so.  Yesterday morning the signs were there when she got up very early.  She had had a little trouble getting to sleep that night.

Our lunch out with a friend and the trip to check out the birds at a lake in a nearby town kept Mary Ann awake through the entire afternoon.  She had not napped in the morning.  I have mentioned before that while common sense would suggest that being up all day would result in sleeping better at night, with this version of Dementia with Lewy Bodies (Parkinson’s Disease Dementia) common sense is pretty much irrelevant.

Last night she also had some trouble getting to sleep.  There were more trips to the commode, and restless times, especially in the very early morning hours.  This morning she got up at about 6:45am and stayed up.

The hallucinations have had a pretty steady presence today.  While I haven’t really asked the rest of the group, I suspect that she either doesn’t have them or doesn’t reveal she is having them when she is at her Tuesday morning group.  The time I have been with her today, the hallucinations have been present and she has seemed out of touch, having lost the mental sharpness of the last week or so.

I was determined to keep her up today in hopes that sleep would be better tonight — hoping that the common sense approach might actually work this time.  I think it was our Daughter, Lisa, who said she thought we might enjoy the children’s movie “Up.”  Mary Ann had mentioned that as one she would like to see.  So, off we went to see to the $2 theater to see “Up.”

It was not what Mary Ann expected.  I am not sure what she had understood it to be like, but I don’t think she realized that it was an animated feature.  Oddly, we were not the only adults there without children or grandchildren.  It seemed to me to be a movie that might scare or be too sad in places for little children.  The movie was well done — Pixar alwsys seems to do creative animation.

She went to bed about an hour ago and does not seem yet to be completely settled.  I hope by being up all day today, we have kept the cycle of daytime sleeping and night time waking from getting a strong foothold.

She will be up early tomorrow so that I can get her ready for a Circle meeting at church.  Our bath aid has an in-service meeting and can’t come in the morning, and there is no Volunteer able to come.

I opted out of the Spiritual Formation group that meets every Wednesday morning here so that I would have time to help her with the morning prep.  My hope is that in the future, I will be able to manage both the group and getting her to the Circle meeting.  The Spiritual Formation group has come to be an important element in process of maintaining equilibrium.  This shift in the direction of the Domino Effect is a reminder that no amount of will power or commitment or planning will change the harsh reality that we are on a roller coaster with no controls to which we have access.  We can only react and make the best of whatever comes.

On that note, I did manage to get in a walk early this morning while Mary Ann sat watching television. I got in a second one while she was at her group.  This evening, there was a Volunteer wtih Mary Ann.  For the first time ever, I attended a local Audubon Society presentation.  An hour long video of birds and their songs was a wonderful treat.  The videographer was there to comment and answer questions.

Well, tomorrow is garbage day, so I had better get the garbage out, and I need to be up early to get MA ready for her meeting.  Here is hoping there will be some sleeping tonight!

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Last night was pretty tough — up and down all night long, then up this morning at 6:45am.  The same is happening as I write this and has been going on for two or three hours.  There is no point in my trying to head in to bed yet since the activity is constant at the moment.  She has been climbing in and out of bed for no apparent reason with only minutes in between. 

While, again, it is a function of the disease, it is no less frustrating.  The time that I have generally claimed as my own in these late hours after Mary Ann goes to bed is coming to no longer be my time.  Tonight I set upon having some spiritual renewal time.  There is a podcast of  the Saturday worship service at the Taize Community in France.  The music is the sort that draws the participant in with a beautiful simplicity.  The readings are done in at least three, often more, languages.   There is a calm and peace that seems to include in community people like me, listening from thousands of miles away. 

I had first read a weekly poetic devotion by Fr. Ed Hayes, whose writings have had much impact on my personal Spiritual journey.  The reading suggested lighting a candle.  I haven’t done it in a very long time, but I pulled out a votive candle, placed in on the worship center, a cabinet built precisely for that purpose, with stained glass inserts in the doors.  I lighted another candle in a tall walnut candle stand made by my Dad, many decades ago.  Next to that candle stands the Shepherd’s Staff made by a parishioner and given to me at my retirement, a symbol of my forty years of ministry. 

A small iron Celtic Cross stands on the cabinet next to the votive candle.  Joining the Cross and candle on the worship center is a large ceramic bowl with lettering and symbols painted on by the other Staff members and again, given at my retirement.  The words are the summary of the congregation’s sense of purpose, “Grow in Faith.  Share Christ’s Love.”  The bowl is a symbol of Baptism, in our tradition, understood to be that first encounter with the Grace of God, an act of unconditional love by God, initiating relationship. 

One other item on that worship center is a simple memento of a long-standing friendship with a small group of parishioners from the first parish  I served as pastor.  It is a small beveled glass case with found items, pine cones, dried weeds, parts of plants, stones picked up on a trip together to Alaska many years ago.

With the candles and the light from the computer screen only,  I began the Taize worship.  As I settled in enjoying the sensations that come with such an experience, the monitor screen that keeps me aware of what Mary Ann is doing as I sit here, revealed the activity.  Since she is at risk of falling when she gets up, needs help to use the commode, to manage the cup of ice water next to her bed, to turn over in bed, her activity demands my participation. 

I have stopped and started the worship a number of times, getting more frustrated each time, resenting the loss of the freedom to enjoy the experience.  There is a odd sort of irony, that the very thing that helps me maintain a healthy equilibrium in caring for Mary Ann, is doing the opposite tonight. 

As the Neurologist allowed, I have just this evening increased the dosage of Seroquel, which is the medicine that both reduces the hallucinations and helps with sleep.  The last increase was not enough.  It is too soon to assess the effectiveness of this increase.  Certainly, the hallucinations have not decreased yet, they continue to be on the increase.  Just moments ago she told me to be careful of the little girl when I was adjusting her sheet.  This morning when she first got to the table for pills and breakfast, as soon as I turned on the light, she tried to show me the blood on her hands.  I think she believed it to be from the raccoons or whatever biting her.  There was, of course, no blood. 

Last night’s post mentioned my need for better choices in the area of diet and exercise for the sake of this Caregiver staying healthy.  Last night, today and tonight have revealed again the difficulty of following through with such plans.  When there are nights like these that string together, it is just survival mode.   A steady pattern of changed behavior seems completely out of reach.   I am still reading the book offering helps for improving the diet part of the problem.  Maybe some changes can be folded into our days. 

As Scarlett would say, “I’ll think about that tomorrow.”

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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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