Last night Mary Ann told me that they were trying to trick her.  They were trying to convince her that she was not in her bedroom.  That is a Delusional Misidentification Syndrome called Reduplicative Paramnesia.  It is the belief that a familiar object is actually a substitute for the real one.

Those whom Mary Ann calls the Thursday people were back.  I think it was they who were trying to convince her it was not her bedroom even though it looked just like it.  At least one other time during the night, she asked if the people had settled down yet. As I have mentioned before, I do not want to reinforce the delusions and hallucinations, but I don’t want to dismiss them since they are real to her.  I try to explain that they are not real in a way that I can see them or do anything about them.  Gratefully, she is not terrified by them.  Hospice Nurse Emily confirmed that today when she asked Mary Ann about the hallucinations.

The problems related to what information her visual cortex sends to her awareness are one of the signature symptoms of Lewy Body Dementia and the Dementia that comes to some Parkinson’s Patients.  It is the problem with delusions and hallucinations that often force the issue of using residential care.  As challenging as they can be, with the help of Hospice, I am determined to avoid any residential care other than perhaps a respite day some time. So far the hallucinations are not so strong and so constant as to be impossible to handle.

Today, again, there were multiple events of syncope (fainting) associated with trips to the bathroom.  I suspect that I held her up on the stool upwards of a half hour adding together ten or fifteen minute segments.  When Hospice Nurse Emily took Mary Ann’s blood pressure this afternoon it was 118/68.  That would be good for a twenty year old.  When it starts out that low, it can, of course, go much lower when she stands up.  I have been trying to manage the fainting without resorting to the Midodrine that raises it.  The high BP is so harmful to her heart and kidneys especially.  If it remains that low, I may need to reconsider restarting the Midodrine.  The Cardiologist has given me the freedom to decide whether to give her the Midodrine based on our quality of life.  The preference is to avoid using it.  Those sorts of decisions place a lot of responsibility on my shoulders.  Yes, I am the one with the best vantage point for making the decision, but I feel the weight of that responsibility.

Gratefully the fainting spells were over just before Hospice Aide Sonya arrived at 11am to wash her hair, give her a shower and get her dressed.  Sonya said that Mary Ann did fine. After the shower, we headed out to do errands and to pick up lunch for Mary Ann.  It was a favorite of hers, steak soup and lemon meringue pie from the Copper Oven.

Again after Nurse Emily left in the mid-afternoon, we headed out for errands.  During that run, I picked up some flowers for Mary Ann.  Daughter-in-Law Becky had won a commitment from me to get Mary Ann flowers regularly in trade for adding our cell phone to their account. Do you see why we think so much of our children and the ones with whom they have chosen to spend their lives?

Of course that trip had to include a stop at Baskin & Robbin’s.  Those of you who have been paying attention will probably want to remind me that late afternoon ice cream treats ruin supper and make for tough nights including lots of snacks.  I know!  But the ice cream tastes so good.  She went to bed not too long after 6pm, and yes she has already gotten up to eat a sandwich and some applesauce.  That was around 9pm.  I hope that is enough to get her through the night.

Even with all the ice cream, I reported to Nurse Emily that Mary Ann weighed in at 113 pounds yesterday.  That is down from the last time, 114.5, but up from the time before that, 112.5.  That is about 10% less than she weighed not too many months ago.  At least she seems to be holding her own at the moment.

There is one way in which her weight is an advantage.  Most of those who post in the online Caregiver Spouses of those with Lewy Body Dementia are women caring for their husbands.  A number of them in the last couple of days have talked about the predicament of having their almost 200 pound husbands fall, leaving them unable to get their husbands back up.  Most of them have had to call 911 to get their husbands back up.

I am grateful that Mary Ann is light enough for me to handle most of the time.  Reading those posts, I appreciate how easy I have it by comparison.  I feel a little wimpy when I have trouble getting her off the floor.  It all has to do with where she is located when it happens, whether I can get her in a position that allows me to pull her up and whether or not she is alert enough to help in the process.  When she is partially asleep or feeling very weak, picking her up from the floor with no assistance from her is almost impossible for me to do without risking damage to myself, thereby rendering our system unworkable.  We do have a Hoyer Lift to use if she is located in a position that allows me to get the sling under her.

It is getting late, and since i have had to get up fairly early each day to prepare for the workers on the remodel project, I am anxious to sleep in a little while tomorrow morning.  That will be up to Mary Ann.

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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.