There is no clear and consistent reason that is obvious to either of us that explains the restless nights that come at random — and far too often.  Sometimes there have been a couple of long naps during the day that might explain it.  Not this time.  Sometimes there is caffeine later in the day; there was a little in the mid-afternoon.  Sometimes there has not been enough in her stomach, occasionally due to poor timing of an ice cream treat, stealing her appetite for supper.  Sometimes there is an activity the next day that has caught her attention and refuses to allow her to relax.

Sometimes it is the hallucinations.  That was the presenting reason two nights ago.  When I was using the monitor to watch, her head would lift up quickly and the she would look intently at something.  Her head moved in that way every minute or so, often less than a minute.  Often she would be up on her elbow, many times up and sitting on the side of the bed.  It lasted until some time between 3:30am and 4:00am.

The hallucinations were the usual ones, animals, threads, needles, people.  While I recognize there is a disease producing the problem, nonetheless, I got more frustrated as the night wore on.  There was, of course, no reasoning away the hallucinations.

Not long after we both finally got to sleep (a couple of commode trips during the sleep time), it was time for me to get up, since Wednesday morning is the Spiritual Formation group that meets on the deck at 7:30am.  I get up at 6:30am each Wednesday and move as quickly as I can to get myself showered and dressed, the coffee made (the most important task), set up the deck, get Mary Ann’s pills and yogurt and ice water and granola bar opened.

Normally on Wednesday mornings, I set up all the above items in the bedroom on a table next to her transfer chair so that if she wakes up before the group is done, she can get her pills taken and food in her stomach on her own.  She almost always sleeps until the bath aid comes around 9am.

Not yesterday!  After being awake and active until perhaps 3:45am, she got up shortly after 7am.   As a result, I needed to stay with her rather than go out to join the group.  After about forty-five minutes, she chose to get back into bed for a while.  I was able then to go out and participate in the group for a time.

It is embarrassing to admit how selfish I am, but I was mostly concerned about the pain in my back and the fact that both the night and my morning were being stolen from me.  I should have  been  more concerned about the challenges the day would bring Mary Ann, since she would be tired and the hallucinations would be worse  than usual.

The day went surprisingly well yesterday.  I began this post last evening but was too tired to finish it.  I just shut down.  We both got a decent night’s sleep last night.  For a few hours today, we had the wonderful gift of a young lady who lifted the wheel chair in and out of the car for a grocery store trip and our Parkinson’s Support Group meeting.  Since then a challenging commode trip and return to bed has irritated my back again, but it still seems to be improving some.  She appears a little restless at the moment, but I hope for some rest tonight.  As always, we will just see what tomorrow brings.

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Why did I talk so much about the mother raccoon and her two babies that visited our deck the other night???  I should have known better.  For the last hour Mary Ann has been seeing a baby raccoon or two under the bed, on the side of the bed, in the bed all around her.  It may be a very long night.

Last night was not a good one.  It was very late before she finally settled.  It pretty much never fails that the day after a difficult night, the hallucinations ramp up in activity.

I feel pretty helpless when this happens.  There is nothing I can say to convince her that they aren’t there.  I know the rule is not to tell the person seeing the hallucinations that they aren’t real.  I have searched for them in the covers and under the bed and around her back as she lay in bed, assuring her that they are not there.  If I agree that they are there, there is no hope of her getting any sleep.  I am watching her on the monitor and will head in to reassure her whenever she appears to be bothered by the….whoops, there she goes.

When I got to the bedroom, she asked if the people (there were no people) had left yet, used the commode, while she holding the corner of the sheet she said she hated the fabric hanging there, she got back into bed and told me she was going to send the raccoons over to my bed.  I encouraged her to do so…back to the bedroom again.  This time a Tums was needed.

I have read hundreds of posts from those in the Lewy Body Dementia Spouses group.  It is pretty unsettling to read how many who have LBD (Mary Ann’s Parkinson’s Disease Dementia is a dementia with Lewy Bodies) have a much worse problem with hallucinations.  I don’t relish the time when her hallucinations become worse and more constant, assuming that happens.  Given recent experience, it appears likely that it will happen.

If these hallucinations don’t subside in a couple of days, I will phone the Neurologist to see about increasing the Seroquel.  There are some scary risks that come with Seroquel, but so far she has not had problems with it.

For tonight’s challenge, I am heading off to bed early to see if my presence will help. She has been quiet for a while.  Hopefully she will get a good night’s sleep.  Tomorrow is another day.  Maybe the raccoons will have left the bedroom and returned to the deck.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

Either there were two mice fighting on Mary Ann’s bed this afternoon as she was preparing for a nap, there were bubbles rolling down the hallway as she sat in front of the television earlier today, and there was a cat on the floor two pews ahead of us when we sat down for the Evening Service at church tonight or Mary Ann has been hallucinating today.   Lots and lots of times throughout the day from the time she got up in the morning until she went to bed tonight she has picked up non-existent threads from the floor, pulled them off her fingers and my hand once also.   

I knew today would be a day of hallucinations and confusion.  For reasons  almost never obvious to us when it happens, last night was one of the nights she was not able to get to sleep.  She was restless – up and down for water, trips to the commode, to eat a snack, to straighten her bedding, to reposition in bed, all demanding my participation.  Needless to say, I am not at my best today either. 

It pretty much never fails that when she does not sleep at night, the next day she regularly crosses the nearby threshold from lucidity to confusion and hallucinating.  The confusion is especially difficult since in her case it is not always clear if she is confused or talking about something real.  She wanted me to get a fruit jar from the basement to send to our Daughter whom she said wanted a clothes pin (or didn’t know what one looked like).  I haven’t yet emailed my daughter to see if they had a conversation the last time we saw her that might explain this . 

I am assuming that this episode last night and today is part of our recuperation process after traveling a couple of times in the last three weeks.  It seems as if she is more vulnerable to bouts of confusion, long daytime naps and hallucinations after traveling.  It is not always clear, however, what causes the adventures into the  part of her thinking and seeing that is not within the bounds of reality. 

Mary Ann’s first major bout of confusion came almost two years ago.  She began to faint often one day and struggle to be clear where she was and what we were doing.  She moved into a non-responsive mode.  She could sit in front of the television, eat food and, with the usual assistance, manage to get bathroom duties accomplished.  It seemed as if she had left the planet mentally.  She did not recognize our Daughter (very painful for her) when she came by to bring Mary Ann something.  By about the fourth day of this, I became convinced that she had crossed a threshold permanently.  Then, without any hint as to why, on that Tuesday morning she woke up completely lucid and conversant without a hint of confusion.  She was able to remember some of the time during her seeming mental departure. 

Parkinson’s Disease Dementia and Lewy Body Dementia have the somewhat unique and insidious characteristic of moving dramatically and quickly between confusion and lucidity.  Some recent threads of posts on the Caregivers of spouses with Lewy Body Dementia have been about the challenge of dealing with the hallucinations, confusion, sometimes paranoia.  PDD and LBD folks live on a margin between reality and somewhere else.  They can move from one place to the other without warning, with no obvious triggering event.  This is different from the somewhat predictable Sundown Effect that comes with Alzheimer’s Disease. 

One thing that Caregivers of Loved Ones with PDD or LBD struggle with is that those who visit or talk with their Loved One may only see and hear the lucidity.  They wonder what the Caregiver is talking about when suggesting that their Loved One has Dementia.  That problem can be especially troublesome when other family members don’t believe there is a problem, while the primary Caregiver is going crazy trying to deal with their Loved One and make difficult decisions. 

A number of those who post in the LBD Spouses group have far more bizarre expressions of delusional behavior and hallucinations.  Some have dealt with Capras delusions in which the person is convinced that their Caregiver (even if a spouse or child) has been replaced by someone who looks just like them.  They will ask to see the other you.  Some who have dealt with that delusion suggest simply telling the person you will go and get the real you, then they leave the room and return announcing that you are now the real person.   There is another delusion called Reduplicative Paramnesia in which the person thinks that the room has been replaced by a duplicate that is not the real one.  One Caregiver said she asked her Loved One if it would be okay to go ahead and stay in this new room.  Some Caregivers in the LBD group, who live in what they call Lewy Land, have to put up with spouses saying horrible things to them, lashing out at them, being accused of all sorts of infidelities because of the paranoia. 

When I read those posts I am grateful that Mary Ann is lucid most of the time, other than on days like this.  The most disturbing hallucinations have been the times she has seen a man and two children, then a man, woman and two children, finally accusing me of protecting them by lying when I explained to her (in what seemed like a lucid moment) that they were not really there. 

The general wisdom is not to argue with the person who is hallucinating since they are actually seeing what we cannot see.  My seat of the pants approach to her hallucinations is to explain that while she can actually see what she is hallucinating, it is not there outside of her mind, in a way that I can do anything about.  When she sees the mice in bed, I run my hands over the spot to verify they are not there.  I wait for her to throw away the threads or have her hand them to me to throw away.  I offer to take her to the place where she sees whatever it is to be. 

While she has told me that the problem is not that she is hallucinating but that I don’t believe her, for the most part, we have been able to work through the hallucinations and the confusion without major problems.  Judging from the experience of others, the time of major problems with hallucinations and confusion and paranoia will come.   

As with most Caregivers, we live in a fragile world traveling on a very narrow road with steep precipices on both sides.  It is not for the faint of heart! 

The problem is that most of us in the Role of Caregiver are  faint of heart.  We are at times scared and frustrated and out of control.  We take each moment as it comes, dealing well sometimes and poorly other times with what we encounter in a particular moment.  We just make do, and in doing so we survive to live to deal with whatever the next moment brings. 

It is interesting to me what impact the accumulation of surviving those moment by moment encounters has on our sense of value and purpose.  Even as our coping skills seem to diminish, a quiet strength appears.  It grows little by little as we endure.  I have more respect than words can express for those in the LBD Spouses online group who have traveled much farther down the narrow road that we have.  They are truly heroes. 

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.