There is no reason to think the hallucinations won’t be back.  She is still sleeping all night and most of the day.  I expected them to fire up last night.  They didn’t.  I expect them to fire up tonight.  I am assuming that Mary Ann is just adjusting to the lower dose of Seroquel, that she will sleep off the transition and return to the cycle of sleep days followed by hallucination days.

She got up pretty early, was up for about an hour and a half this morning, and went back to bed.  While she was up, she took pills and ate a good breakfast.  She was calm and lucid.  She says very little when she is up.

She was up again early this afternoon. I got her dressed. She ate a good amount of food for lunch.  Again, she was calm and lucid.  She lay down after an hour or so.  As has been so every day since last Saturday there was some intestinal activity, sometimes almost as difficult to handle as Saturday’s problem. Other than that, the care issues have been minimal.

At this moment it is a little before 7pm and she is still sleeping.  I am concerned about how much she is sleeping, but comforted that she is eating reasonably well at least at breakfast and lunch.  There is less production by her kidneys, but since she is sleeping so much, she is not taking in enough to produce much.  The color is okay.  I will certainly keep an eye on that.  If I get concerned, I will call Hospice to talk with the nurse.

Because she is lying down so much, when she does get up, she is vulnerable to fainting, but even that is not as bad as it has been at times.  I have done nothing much today, just waiting and watching.  I have the monitor on so that whenever I am back here at the computer I can see if she is stirring.  Otherwise I just go in and out and check to see that she is okay and ask if she wants to get up.

The only progress today is that I got a phone call in response to the fax that I sent.  The Nurse was clear that the Neurologist would still be available to deal with the Parkinson’s but not the Parkinson’s Dementia or any medicines used to treat the hallucinations (the primary symptom of Parkinson’s Disease Dementia).  I said nothing in response other than asking for clarification that he would still see us at our next scheduled appointment.  I asked if he would renew the Seroquel Prescription that he started prescribing about a decade ago.  She said that whatever Psychiatrist we  find should do that.  I have to say that everyone in the online Lewy Body Dementia Spouses group, as far as I can tell, uses a Neurologist and not a Psychiatrist to deal with their Loved Ones’ [LO] treatment and medications.  These are a few hundred folks who have been dealing with this disease, some for very many years.  Very many LO’s have hallucinations and delusions and sleep issues identical to Mary Ann’s.  Among them, the use of various medications including Seroquel works for some and not others.  There is no consistent pattern of treatments.

…She got up again at about 7:30pm to go to the bathroom and change into her pajamas.  Then she returned to bed.  I will wake her at 8:30pm or 9pm to give her the bedtime pills and see if she is hungry.

…I got her up to take pills at about 9:15pm.  She wanted to eat something and chose a single serving container of applesauce.  She lay back down as soon as she was done with the pills and the applesauce.

I did take a little time to sit on the deck this evening, reading some more of the book of meditations (titled Christ, My Companion) on the Prayer of St. Patrick (St. Patrick’s Breastplate).  The writer, Marilyn Chandler McEntyre, is an intelligent and spiritual writer who reflects good Biblical scholarship and an appreciation for the intricacies of the Physical Sciences.  That is a combination I especially appreciate.  It always helps tune my mental and spiritual receptors when I read in a woodland setting even if human-made, located in our backyard.  The trees, flowers, sounds of the waterfall, birds, and tonight, fireflies, all helped create access to my spirit.

I took a moment to go to the front of the house with my binoculars to bathe in the light of a bright perfectly round full moon, just rising from the horizon between two trees.  It is surprising just how much of the landscape on the moon becomes visible with good binoculars.  With such a bright full moon, I didn’t expect to see so many stars and planets, even a couple very close to the moon, still visible.

Mary Ann seems to be sleeping, but she is doing the jerking that I  have seen  more often lately.  I may just be seeing it more since she is sleeping more at the moment. I don’t know if what she is doing qualifies as Myoclonic Jerks, but even if they are, to my knowledge, it would make no difference in treatment.

I continue to wait for the hallucinations to begin again. I am getting spoiled by having time to rest.  I would be happy for them to take a long vacation and leave Mary Ann alone for a while.

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I called this morning to find out how we should go about reducing the medication that seems to be making things worse.  Through his nurse, last week we were instructed to call back after a few days on the newly increased dosage of the Seroquel.  When she called back, she simply said that we needed to find a Psychiatrist to manage the dementia and the meds.  We have just been set adrift and are on our own.

This University of Kansas Neurologist specializing in Parkinson’s is the one on whom we have depended for about fifteen years now.  There are very few options where the kind of expertise needed to deal with Mary Ann’s complex version of Parkinson’s is available.  KU med center is one of the few places in the country.  None of the rest are close enough to do us any good.

I need to find out whether or not he is still willing to continue prescribing the medicines dealing with the motor issues associated with the Parkinson’s.  Then there are some meds that have impact on the dementia, but were prescribed by the Neurologist to deal with the Parkinson’s.  He also prescribed some of the meds that are intended exclusively to help with the dementia.  What happens when we need a refill?

When I asked during last week’s phone call if there were any Psychiatrist’s at the med center to whom we could be referred to manage the medication the nurse curtly told me that they were not taking new patients.

I have begun checking to find out if there is anyone here in this area who is competent in dealing with Lewy Body Dementia [LBD].  It is enough different from Alzheimer’s Dementia [AD], that it will not be adequate to simply be aware of the usual treatments for AD.  So far the responses seem confirm my impression that we are underserved in this area with good Psychiatric/Neurological care.

Whether rightly or wrongly, I have concluded that generally the medical community loses interest in folks in the later stages of life.  Hospice does a wonderful job of helping people during those years with end of life care.  They, however, are not in the business of treating the diseases that bring people to that point.

I will seek out the best care that I can locate here in this area and try to draw the best out of whomever she sees for care.  My goal remains to have the best quality of life possible for as long as possible in the face of a progressive disease process that we cannot stop.

I am apprehensive about how things will go now that we have discontinued the extra morning pill that seemed to make things worse.  It is a pretty powerful medicine.  Reducing it can have a negative impact.  Tonight Mary Ann seems unable to speak clearly — the words are slurred and pretty much unintelligible.  It is making the simplest communication very difficult.  It took a long time to determine that she wanted to sit up on the side of the bed and have some water.  When I gave her the water, she seemed unable to use the straw.  The years of experience giving people wine from a chalice during my active years as a Pastor came in handy as I helped her drink directly from the cup.

This morning Mary Ann got up very early again after a number of times up earlier in the night.  I actually can’t seem to remember how much sleep I got.  I did get to bed pretty early for me.  I think I got a little more between Mary Ann’s dreams.  She was again hallucinating constantly.  This morning she was actually pretty entertaining with some pretty silly comments.  She ate breakfast, then Bath Aide Zandra came.  She did not seem to do well and afterward was unclear that it was Zandra who had been here.

She napped a bit, rested with her head down some of the time.  Lunch was a little harder than usual to get accomplished.  Supper was tough since she just couldn’t hold her head and the upper part of her body up for me to feed her.  Holding her up and feeding her is really very difficult to do.  When we finished, she had eaten a fair amount of meatloaf, if little else.

Volunteer Tamara came this evening while I got to the grocery store.  It has been tough to get out lately even to do the basics.  Mary Ann is now in bed, but she seems to be having trouble settling.

I am dreading the task of finding competent medical care, developing a good working relationship with him/her, and adjusting to whatever changes in medications and treatments may be involved.  It is hard to walk into a new situation in which I bring 23years of intense study on this particular patient, but those with whom I am sharing come with the confidence that they are the experts whose decisions must be accepted as the final word after a few minutes of conversation.  We have been spoiled by having doctors who have listened well and communicated well.

I am looking for some good to come from this transition.  It often happens that paths we would not have chosen bring us to a better place than we might have gone otherwise.  I can hope.

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Can it get tougher?  Apparently so.  Those who read this regularly must be getting awfully tired of hearing about the list of problems Mary Ann is dealing with and my complaining about their impact on me.  I debated even about writing a post today. It was ugly and messy.  My reaction was noisy and complaining.  There was absolutely nothing entertaining about today’s perfect storm of problems converging at one time. There is no resolution in sight.

Each of the elements of this perfect storm by itself is enough for Mary Ann and me to deal with.  I will describe again the ones relevant to this meteorological marvel.

One element:  Mary Ann has had Parkinson’s Disease for more than 23 years.  The medication of choice for Parkinson’s is a form of L-dopa.  The brand name is Sinamet.  That is the only effective medication for providing mobility.  Without it, Mary Ann stiffens and becomes rigid from head to toe.  After years of taking Sinamet, a side effect is wavy involuntary movements of body, arms and legs (as seen when Michael J. Fox is in the public eye).  Those movements are called dyskinesias.  The result is legs twisting together, body shifting one way and another, arms moving this way and that.

Another element:  People with Parkinson’s Disease develop problems with the functioning of the Autonomic Nervous System [ANS), the part of the brain that runs a whole list of activities in our bodies, activities that happen without conscious intervention.  In a small percentage of those with Parkinson’s, the ANS’s ability to quickly constrict blood vessels when they stand up keeping their blood pressure high enough to make sure that the brain gets enough oxygen no longer remains consistently able to do so.  That means the person affected gets dizzy at best and loses consciousness at worst.  Mary Ann has won the unfortunate privilege of having a severe and erratic version of that problem.

Another element:  Again, only a moderate percentage of those with Parkinson’s Disease develop Parkinson’s Disease Dementia.  There seems not to be a clear and consistent assessment of the percent of folks who move on to the dementia. This form of dementia is a form of Dementia with Lewy Bodies.  While there is no good dementia, it is a particularly insidious form of dementia.  More than memory issues, it is about visual hallucinations, delusions of all sorts, and vivid dreams that cease to be differentiated from reality.  There are few available in the way of medications that control the symptoms.  Most that might do so ultimately make the symptoms worse.

Another element:  One of the problems that comes with Parkinson’s is bladder activity.  There is the need for many trips to the bathroom day and night.  Because of the movement problems that come with Parkinson’s, help is needed when using the bathroom or bedside commode.  Another of the problems that come with Parkinson’s is sleep issues, the ability to get to sleep, stay asleep, disturbing dreams that interrupt sleep.  Another problem is that those with dementia often hallucinate most at night.  The combination of those problems is that those with Parkinson’s and those who care for them often have sleepless nights.

Another element:  One of the central non-motor problems with those suffering from Parkinson’s is constipation, intestinal issues.  The ANS not only runs the smooth muscles around the arteries, but the smooth muscles that move food and waste through the alimentary canal.  Those muscles slow reducing the natural ability of the intestines and colon to move things along.  Miralax and Senna are the tools of choice needed for Mary Ann to keep her insides running.  The result is not always orderly when finally there is activity.

Now to the Perfect Storm.  We have had two sleepless nights in a row, hallucinating has gone wild, morning, noon and night.  Just as we headed into the bathroom, the dyskinetic movements kicked in with a vengeance.  Then came the horrifying last element of the perfect storm.  There was soft and nasty matter that ended up spread on her back side and legs from her waste (on shirt) to her ankles.  My job was to clean her while she was popping up (the dementia – no matter how many times or how loudly I asked her to stay seated), fainting again and again, legs twisting and crossing and rubbing against one another when sitting or standing (with me using all the strength I could muster against her leg muscles to keep them apart), again, while trying to clean her up. There was another bout later in the day — not as bad, but not too far from it.

The hallucinations are still continuing tonight.  She has been hallucinating all day.  A short time ago I had two trips into the bedroom trying to convince her that it is time to go to bed, not get up.  Four minutes after the second trip in, finally convincing her that it is dark out, time to be in bed, she got up trying to get ready to go to church.  Last night once I woke to her sitting on the side of the bed yelling “help” and when I sat next to her she said someone was going to rape her.  This morning she woke me as she was sitting on the side of the bed crying, describing her beating at the hands of a policewoman who kept pounding on her.  I am afraid that the images from all those Law and Order episodes are folding into her hallucinations. I have been in at least a dozen times in the last hour or so.

Even though we had difficult nights, the the last two nights, this morning I managed to sleep while she napped for a couple of hours.  The perfect storm came right after that nap.  I was completely exhausted physically and mentally after the major bathroom battle.  Everything hurts, muscles, gut and mind.

These events are hacking at my resolve, my commitment to see this through to the end here at the house.  I am disappointed in my own seeming inability to handle this, but more horrified at the thought of not keeping my commitment to caring for Mary Ann at home.  I don’t want her not to be here, so that resolve is not just for her sake.

I wrote a bit on my dilemma in an email to the online Lewy Body Dementia Spouses’ group (many of whom have had much more difficult situations than mine).  One response was simply this little poetic piece:

who knows who knows
what do you do
when you break your commitment
or it breaks you

For now, I am taking some small comfort that while what happened this morning took me far past my ability to cope, I still did it.  I had to.  I am still alive, in some more pain than I care to have, but alive.  …and, for that matter, so is Mary Ann, alive and clean — still hallucinating in a steady stream.  I doubt there will be much sleep in this house tonight.

One reminder to those who wonder that you don’t hear from me (a retired pastor) glowing words about my faith life making this task easier to endure. Nowhere does there come any promise that life will be easy, that we will feel less pain, experience less frustration, because of our trust in our Maker and the One who healed our relationship with that Maker and the One who inspires us with His Power.  My faith is not weakened by my human weakness.  Instead, the One who does the healing retains the power.  I am all the more grateful that the healed relationship does not depend on my strength, but His.  His strength, my weakness.  That is the heart of the message of the Cross.

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Medical solutions seem to offer no help, but instead worsen symptoms.  It may be too early to tell.  I hope so.  It seems as if the increase in the medication of choice for controlling the rampant hallucinations, made them worse for two days and nights.  Now it appears that the concerning side effect of lowering blood pressure resulting in the inability to stay conscious has surfaced with a vengeance.

Last night Mary Ann for the second night in a row, slept through the night.  On the one hand, I am very grateful.  She got rest raising the possibility of becoming more lucid with less intensity in the hallucinations.  I have been able to sleep.  Last night I got almost ten hours of sleep.

Mary Ann slept from around 6pm last evening to 10am this morning without moving a muscle or using the commode even once.  The time she has been up, she has not been hallucinating to any substantial degree, at least it has appeared that way.

So what is the problem?  I fed her breakfast and pills.  She was up for while, quite subdued, but awake.  She got hungry again and wanted to eat something.  I got her a sandwich.  At the second bite, she pretty much fainted just sitting in her chair.  I could get no response.  I tried to get her from the chair at the table into her transfer chair with the wheels so that I could get her to the bed.  She was completely dead weight.  I tried to do it, but she slid to the floor.

After switching the chair into a different position and trying to slide her body into a different position, I noticed a little dyskinetic movement, the movement that tells me that her Sinamet is kicking in.  I pulled her up the way I usually do, hoping her auto pilot would kick in.  That and the Sinamet provided enough help from her to get her into the chair.  She just hung in it, limp as a rag.  I managed to get her into bed, where she stayed for a couple of hours.  That happened just at the time we were to leave for an eye appointment to see about new glasses.  I phoned to apologize and tell them that she would not be coming.  It has apprears to me that there is little chance she could function well enough to answer all the “which is clearer” questions.  I did not reschedule.

She finally began stirring enough to allow me to get her to sit up and try again to eat something.  While we were doing that some Members of the congregation phoned, Gen and Dwight, to bring over a little something from the a group of older adults in the congregation.

When they arrived, they greeted Mary Ann and she responded.  She had chosen to stop eating after about half of the sandwich was eaten.  She continued with some more chips and Pepsi.  Gen and Dwight and I talked for a while as Mary Ann was sitting at the table.  After a time Mary Ann fainted again.  I went over and stood behind her and held her up in the chair as we finished our conversation.

After they left, I took Mary Ann’s blood pressure.  It was 95/65.  She was pretty much completely out.  I managed to get her into the transfer chair.  Again, she was dead weight.  with the same difficulty, i got her into the bed.  I have not been able to get her up since.  That was more than four hours ago.

If the increase in Seroquel does not allow her to stay conscious, it is not an acceptable solution to the problem of uncontrolled hallucinations/delusions/dreams mixed with reality.

At the moment, all I can do is watch and wait to see what tonight and tomorrow bring.  Depending on what happens, I will decide whether to phone the Neurologist tomorrow or Monday to talk about whether or not to continue the increased dosage of Seroquel.  It is tough to see options dissipate as we seek to make the best of this combination of problems.

…It is now much later in the evening.  At one point Mary Ann got up just long enough to change into her bed clothes.  She wanted to get right back into bed.  This time she did not fall back asleep.  After a bit, she pushed the doorbell button on the bed stand to call me.  When I came in, she said she had been yelling for me.  Since I was watching her carerfully on the monitor and the door to the bedroom was open, I knew there had been no yelling.  She said she wanted me to get her back into bed.  She was lying in bed when she said it.  I asked her where she thought she was at the moment.  She said “on the toilet stool.”  She had thought I had left her there and forgotten about her. I pointed out that she was in bed.

I asked her if she wanted something to eat since she had not had supper.  She agreed that she did.  I had made some chicken salad from a packet and ingredients given to us by Trudy and Coleman who visited last Sunday.  Mary Ann ate the half sandwich and chips followed by a bowl of ice cream.  She fed herself the sandwich and chips.

I am suspecting that the dementia will be returning tonight.  Oddly, it seems that when she is most verbal, able to walk and take care of herself (eat on her own), the dementia is beginning to fire up. She is back in bed now, but has called me two or three times for one thing or another.  She is no longer fainting.

Based on prior experience, it just seems as if she will be up much of the night tonight.  We will see.

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Things really fired up last night.  It wasn’t our worst night, but not too far from it.  Mary Ann bounced from one reality to another to another to another for most of the first half of the night.  It slowed to two or three times an hour between 3am and 6am and then started in again in earnest.

It was a very bizarre world she was in until she finally rested her head on the little table later in the morning.  She described in great detail a birthday party that was thrown for her — never happened.  She talked to her Dad.  She reported to Bath Aide Zandra that her brother from Wyoming made a surprise visit.  She was constantly seeing and talking with people, describing things that were happening right in front of her as I was there completely confused by the stream of apparitions.  She had to get up early to finish the Blueberry French Toast egg casserole that was not there.  She came back to that a number of times.  It is very good.  I may try to make it soon just so that we both can enjoy it.

As always, I was completely at my wits end throughout the night and morning.  The hallucinations were a constant presence when I was with her all day long.  This morning, she was in hyper-mode.  She was talking clearly and distinctly, walking pretty much on her own. I just held on to the gait belt for dear life as she moved quickly from one place to another either with clear plans in her mind for what she would do or no idea why she had gone there.  It is such an odd combination of dementia and energetic activity and strong communication skills that there is no way I can describe it adequately.  All I can say that from my perspective it is utterly maddening.

Gratefully, Friend Jeanne came over and gave us a break from one another for at least a couple of hours.  This evening Friend and Volunteer Shari was with her so that there was another break. I just sat and watched the sunset, half dozing.  I read a little from the book of devotional observations on the St. Patrick’s Breastplate prayer.  Both the sunset rest and the reading helped some, but my brain is just very tired.

I plan to wait at least until Wednesday to phone the Doctor’s office to report on the impact of the increase in Seroquel.  As I said last night, the vagaries of Mary Ann’s symptoms makes it almost impossible to discern what has to do with that change and what is just another of the usual vacillations.  The med is supposed to reduce hallucinations.  The last time we increased it, the first three days of the increase had more and stronger hallucinations than ever.  That is what has been happening today.  I want to give this change at least three days just in case it becomes effective after that, as happened with the last increase.

This continues to be one of the tougher times in the years we have been battling the disease.  I expect tonight to be a difficult one.  I will know for sure in a few hours.

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Coleman and Trudy live in Oklahoma on an inlet of Grand Lake.  They were members of my first parish in the Kansas City area.  They have a beautiful rustic setting and appreciate wildlife, especially the birds, as do we.  They brought Oklahoma Joe’s BBQ (from Kansas City).  We ate and talked and mostly enjoyed the birds.  The birds were very active, busy all the while we were watching. It was rainy all day, but never really rained. It seems as if the birds spend more time at the feeders on rainy days.

Mary Ann started getting fired up for a hallucination day this morning.  She was up a cluster of times, especially toward morning.  We got up sometime between 6am and 7am.  I got Mary Ann dressed and fed, then washed her hair in preparation for the company.  She was doing a lot of hallucinating, not as intense as some days, but on her way to unmanageable.

After a time, she lay her head down on the table.  When we headed in for a bathroom trip, she sort of wilted and ceased to be able to do much to help in transferring from the wheel chair to the toilet stool.  I was concerned that I might not be able to get her back to the chair.  She was not completely limp, so I was able to get her into the chair and then into bed.  This was a bit of a new twist on her condition, although I tend for forget quickly what we have been through before unless it was particularly traumatic.  Forgetfulness is sometimes a blessing!

I was concerned that she might be down and unable to respond for the entire visit today.  As it turned out, after an hour or so of sleep, I was able to get her up in time for their arrival.  She did pretty well for most of the three hour visit.  Trudy is a good friend to Mary Ann and has been for decades.  She kept Mary Ann engaged as much as possible.  Coleman and Trudy are both valued friends to me also.  We seem to have a lot of interests in common (especially Grandchildren).

Mary Ann did lay her head down for a while, but perked up again until they had to get on the road.  While yesterday Mary Ann fainted every time she stood up, today she almost never fainted.  The hallucinations were not apparent during the time of the visit, but they have fired up again this evening.  Mary Ann decided she wanted a bowl of cereal since she only had an applesauce snack since lunch and chocolate cake, plus rhubarb pie later in the afternoon.  While at the table eating the cereal, she jumped and described an exciting sight.  She saw the flowering plant on the deck just outside the window, move and throw quills, as in a porcupine.  She has said more than once that she slept through the day.  Each time I reminded her about Coleman and Trudy’s visit — which she always then remembered. It is hard to imagine that there will be much sleeping tonight.  She just went back to bed, but I don’t expect her to stay there for long.

She has had the additional half tablet of Seroquel the last two mornings.  She takes one and a half pills at night.  The purpose of the Seroquel is to diminish the hallucinations.  It has the side effects of causing drowsiness and sometimes low blood pressure dizziness.  The last two days have not yet produced any behavior that can definitely be connected with the additional Seroquel.  Mary Ann’s dramatically varied manifestations of her stable of diseases, makes it very difficult to discern what might be the result of a med change unless there are either new symptoms or a very obvious change in symptoms that goes on for a number of days.

The complex and difficult task of figuring what to prescribe, how much to give and when to give it, makes me wonder how it is possible for a physician to make such a call in ten or fifteen minutes at an office visit.  I will wait another couple of days before calling the doctor’s office with a report on the impact of the new dosage of Seroquel.

Here eyes are still open.  I wonder what the night will be like?

Well, it wasn’t wild and crazy partying, but given our circumstances, it was okay.  After sleeping well last night, Mary Ann got up some time after 10am.  For some reason, when we were finishing with her pills and food (she was already dressed). I remembered a couple of music CD’s we had gotten when Occupational Therapist Karen was working with Mary Ann using rhythmic movements in her therapy.  It is a CD of big band music from the thirties and forties.  Even though we were not born until the early 1940’s, the music was part of our very early history.

I put the CD’s on and invited Mary Ann to dance.  As I have admitted before, I don’t dance.  I can, however, sway.  She laughed at me, as usual.  We stood for a minute or two of swaying/dancing before she fainted from the Orthostatic Hypotension (drop in blood pressure when standing) that has come from a combination of medicines and a compromised Autonomic Nervous System (due to both the Parkinson’s and the Parkinson’s Dementia).

Today did not include the option of going out anywhere since Mary Ann fainted every time she stood up — that is every time!  There was some intestinal activity, which always included a cluster of fainting spells.  I just hung close to her at all times.  If she just stood up in front of her chair to stretch her legs, she fell back into the chair and was out for a time.

In spite of that, the day went better than I thought it might.  She was awake most of the time.  She did not seem to be hallucinating very much at all.  She got good, long phone calls from both of the kids.  Daughter Lisa’s crew sang happy birthday, and both of the girls (5 and 7) had stories to tell about what was going on with them.  Mary Ann was able to respond a little to both Son Micah and Lisa.

My Sister, Gayle, phoned and sang happy birthday also, so Mary Ann got lots of attention.  There have been lots and lots of cards.  She now has a bank envelop with the words “for ice cream only” filled with a total of $60 in cash.  The bank teller wrote that note on the envelop in accord with the note on a $50 check.  I believe there will also be some Graeter’s ice cream from Louisville delivered when Lisa and her crew come to visit in June. That has to rank as one of the best in the world of ice cream.

Don and Edie came over again to deliver some flowers and visit for a few minutes.  Volunteer Coordinator Mary had brought over a bouquet yesterday.  Friend Jeanne called, widhed Mary Ann happy birthday, and arranged for a visit on Monday.

After eating a slice of Glory Days Pizza for lunch (left over), we each had a piece of rhubarb pie (Volunteer Coordinator Mary made it a couple of days ago using Mary Ann’s recipe).  Mary Ann’s piece, of course, had a couple of scoops of ice cream on it.

Mary Ann dozed for a while with her head down on the little table in front of her, but was awake most of the time.  The big band music was on for much of the time.  Later she lucked out and found a couple of episodes of “House,” followed by an NCIS marathon.  We went through birthday cards.  She was not as alert yesterday when I read some to her, so we went through them again.  She was much more alert today.

The wildlife was entertaining to both of us at various times.  Three very colorful Baltimore orioles were in and out of view for much of the day.  It was rainy outside, but only occasional sprinkles.

After some more leftovers for supper, we each had a big piece of the three layer melt-in-your mouth chocolate cake frosted with thick layers of whipped cream and coconut frosting.  I made a pot of Sumatra Badak Rhino Blue Tawar coffee from PT’s. It is a moderately dark roast that fit my taste perfectly.  Mary Ann is not much for the strong coffees that I enjoy.  She prefers Pepsi.

Today, I included the additional half tablet of Seroquel in the morning cluster of pills.  The Neurologist is suggesting we try that addition to see if it might help reduce the hallucinations.  It can cause her to sleep more of the time and increase the fainting, but the fainting had already started before she took her meds and long before the medicine could have gotten into her blood stream. She didn’t sleep as much as usual during the day today.  It is way too soon to draw any conclusions on the effect the increase in Seroquel might have.  Today she seemed to have minimal trouble with hallucinations and more fainting, but the medicine may have had no part in those characteristics of the day.

Mary Ann slept well and for a long time each of the last two nights.  I also have had two full nights of sleep.  I have absolutely no clue whether tonight will be a night of sleep or a night of hallucinations/delusions/dreams mixed with reality, up and down with no sleep for either of us.  I do know which I would prefer.

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