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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I tried to find out what differences there are between the two of me.  She never really said.  Last night was the sort of night that usually begins the hallucination days.  She was in need of help a number of times.  It was not a night when she was up every few minutes with a new hallucination, but we were up more than once per hour.  I expect more intense and frequent hallucinations tonight since they have been so strong today.

I remembered the part about sleeping when she is sleeping during the day after a difficult night.  She never napped today.  Hospice Aide Sonya said that Mary Ann kept getting up as she was trying to give her her shower this morning.  Sonya finally just finished quickly since it was not safe while Mary Ann was so anxious (Sonya’s word).

Mary Ann had gotten up very early, as usually happens when the dementia is firing up.  I was surprised that she stayed seated while I got my shower.  She ate three normal meals today.  Only for very short periods of time did she put her head down.  Almost the entire day, she was in pop up mode, demanding my remaining only a few feet away at all times.  Once when the phone rang, she popped up and ended up on the floor on top of the rolling table that is in front of her chair.  As always, she did not hurt herself.  I had to hang up and phone back later.

Finally in mid-afternoon, I was able to get her into the car so that I could get coffee and then get ice cream.  She is actually safest when seat belted in the car.  That way she can’t pop up, fall and hurt herself.  She stayed in the car during our stops.  This time I got her dish of ice cream (frozen custard) at G’s, fed it to her, and then went back to get mine.  I can’t help her and eat ice cream at the same time.

She was talking lots to people that she saw during the day, none of whom were actually there.  I left the room for a moment and she went to the sliding glass door to let in the dog we don’t have.  She quietly asked if I didn’t want to go out on the deck and talk with Daughter Lisa, whom she said was out there.  Lisa is in Kentucky where she lives with her family.  Once when I had given her a lemon bar, after the first bite she said I was trying to trick her.  Then she said something about my going to or coming back from London.  While I have no idea how the Lemon Bar and London were associated, this time there was an explanation for London coming into her mind.  Right at that moment on television a character on NCIS was talking about going to London.

Mary Ann finally decided to lie down right after supper.  I am so grateful to have a moment’s relief from jumping up and grabbing her gait belt as she went looking for one thing or another.

I got Mary Ann up to change into her bed clothes and take her nighttime pills.  I am going to try to get to bed early tonight in hopes that she will sleep a while before the night time hallucinations get going.  Most times any hopes such as those don’t materialize.  We will see how it goes. She already is appearing restless.

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I am expecting a worse night tonight than last night.  My hope is that she will nap tomorrow so that I can get some sleep then.

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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I am not sure either of us would have survived another night of constant hallucinations.  She slept soundly last night.  This was my early morning, but it still felt good to have almost six hours of sleep.

Wednesdays are often very active days in our household.  Mary Ann slept through my time in the Spiritual Formation Group that meets here.  I got full advantage of another thought-provoking and nurturing time focused on the Presence of God in our lives.  The conversation was stimulating, meaningful and very engaging.

Bath Aide Zandra came shortly before the group time was concluded.  She had to awaken Mary Ann to do the morning prep tasks.  While Zandra was doing her task and our group was concluding, Parish Nurse Margaret came to spend some time with Mary Ann.

I chose to do the breakfast and pills with Mary Ann to maintain our routine.  Then as Margaret finished with Mary Ann’s toast, I started preparing for Kristie’s arrival.  Kristie does the monthly thorough cleaning, since I am all but useless at the task of house cleaning, especially the abhorrent task of dusting.  Kristie arrived just as I started the task of putting things away so that she could get to as many uncluttered surfaces as possible.

While Margaret stayed with Mary Ann and Kristie cleaned, I got a break to go and get more birdseed.  The little piggies are devouring seed at a phenomenal rate.  That is my part of the deal.  Their part is to provide us with hours of entertainment.  Yes, my feeding them is self-serving — but they do get something out of the deal.  Today is another rainy day, bringing lots of bird activity.  Unfortunately, there is evidence that the raccoon(s) have returned.  Unless a flock of birds came during the night and devoured a couple of pounds of seed, the cute but annoying little beasts are back.  Rather than messing with trapping, I plan to bring the feeders they bother into the house each night.  They can just argue with the possum over the seed in the platform feeder by the waterfall area.

Shortly after 1pm, a couple of folks came to talk about scheduling some paid time with Mary Ann on a regular basis.  This option came as a referral by Hospice Social Worker Kristin.  These folks are more reasonable than the Agency we use some times, and all of them are either licensed CNA’s or LPN’s who have had lots of experience with folks with Mary Ann’s sort of problems.  Glenna had served someone with Lewy Body Dementia and reviewed information about it on the Internet before coming to meet with us today.  We will begin with a Monday time the second week in June and just see what seems to be the most helpful.  She said that between her and three others like her, we should be able to get help on fairly short notice if needed.

Then at 2pm Volunteer Clarene came to be with Mary Ann for a couple of hours this afternoon.  At the same time former Parishioner Jay came by with a Latte for Mary Ann and coffee for me.  After we all talked for quite a while as Mary Ann was napping, Jay and I headed to PT’s just for some relaxed conversation (and more coffee).

Mary Ann spent a good deal of time today resting her head on the table.  When there was interaction, there seemed to be minimal evidence of hallucinating.  She napped in bed for a time this afternoon.  She was up for a bit when Clarene was with her and had a little more of the pizza I had gotten her for lunch.

After I returned we sat up together for a while, but she soon wanted to get changed for bed and lie down.  As always I don’t really know what to expect as to how the night will go.

As to the increase in the Seroquel, last night did not confirm that in Mary Ann’s case it increases hallucinations instead of reducing them.  The last increase many weeks ago produced a couple of bad days followed by some good days.  I would like for this increase now to produce some good days.  I am not even willing to hope that it will be so.  That sort of hope just sets me up for disappointment.  It is possible there will be some better days, but it doesn’t really seem very likely to me — possible, but not likely, that is tonight’s mantra.

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Last night was a little more constant than the night before in the rampant hallucinations/delusions/dreams mixed with reality.  This morning was at least as tough as yesterday morning.  She speaks clearly and with a strong voice.  She can get up and walk on her own, and I just hang on to the gait belt, helpless to change her behavior as we move this way and that.

She got up very early, when i could no longer coerce her into staying in bed.  After breakfast and pills, she was up and running for an hour or so.  Then she went into the bedroom, with me tagging along, and decided to get back into bed.  I, of course, was completely wasted from two nights in a row.

We had an appointment with a quality control worker from Wichita to evaluate the care we are getting from the state agency through the local County office.  For us that meant evaluating our Case Worker and Bath Aide.  She arrived a short time after Mary Ann had gone back to bed.

When the Evaluator arrived, we went into the bedroom to see if Mary Ann was awake enough to participate.  Mary Ann said she would participate but was clearly unable to do so.  I explained that we had been up two nights in a row resulting in her needing the sleep.  The Evaluator asked if she was sick.  Admittedly, I was baffled by the question since she was here to Evaluate the people helping us because Mary Ann is debilitated.  I told her it was the Parkinson’s and the Dementia that were at issue.

The Evaluator got the information needed for the form.  She was pleasant and understanding, even though her initial question had seemed pretty silly to me.  In the course of the appointment, she asked if I would be getting any rest.  I said that while I usually don’t rest during the day, I would have to do so if there was one more night anything like the last two.

After she left, I did some chores.  I continued to think about the option of my getting some rest during the day.  I chose not to do the variety of things that I would normally do with the break provided by her sleeping.  I went in and lay down to allow myself the option of getting some rest while Mary Ann was sleeping.  I actually slept for a couple of hours.

The negative of sleeping when Mary Ann is sleeping is that I lose time that is free for me to spend on things of interest to me, helping me keep my sanity and get some perspective on the daily struggles.  It is hard when all my waking time is taken by the caregiving tasks themselves.  This has, however, come to be a matter of survival.  If there is any hope that I can keep doing this while the dementia is in full swing, I have to get some sleep.  I am hoping that I can manage to continue to use at least some of Mary Ann’s rest time as my rest time as well.  I have to relent on my intention to keep nights for sleeping and days for waking.  I have tried not to reverse those two.  I no longer seem to have a choice on that matter.

At least once before, I had decided that it was time to look at facilities that might be acceptable for Mary Ann’s full time care.  I am again at the point of considering at least getting enough information to be able to know where to turn if things get too much harder here.

Hospice Nurse Emily came for her weekly visit this afternoon.  Mary Ann had just gotten up from her nap (as had I).  I tried to feed Mary Ann some lunch, but she just couldn’t handle even the chips and Pepsi.  She could barely suck on the straw enough to get the Pepsi into her mouth.  She only managed a very few chips when I was able to get them into her mouth far enough for her auto pilot to kick in and the chewing start.

Mary Ann’s Vitals were good.  Her blood pressure was 124/74.  That is about as good a set of numbers as a person could have — of any age.  Needless to say, next time those numbers could be half again as high or a third lower (as in the last two times it was taken).  Emily agreed to call about the progress on the possibility of having some paid help through Hospice so that I could count on a certain time for R&R each week. Emily did make that call, and one of the Aides is coming tomorrow to talk about the possibility.

Mary Ann was up for a while, but subdued, mostly with her head down on the table.  Eventually, she headed in to take a nap.  She was not interested in supper.  When Volunteer Barb arrived to spend time with her this evening, I went to check on Mary Ann to see if she needed anything before I headed out for a while.  She wanted to change into her pajamas and stay in bed.

After I returned and Barb left I checked again on Mary Ann.  This time she did want supper.  I got her a left over pulled pork sandwich and chips.  She ate pretty well and then went back to bed.  I have no reason to think that tonight will be any different from the last two nights, but I can hope.

I did phone the Neurologist’s office and leave a message reporting on Mary Ann’s behavior since we are trying to decide if the addition (three mornings ago) of the morning half tablet of Seroquel is helping more than it is hurting.  At this point, I am not sure what I think about that.  It does seem as if the consistent level of the hallucinations the last two nights suggests the medicine is having a negative effect.  Tonight may confirm that, or just sustain the confusion about what the medicine is or is not doing.

In the time away this evening, I read another section in the book on St. Patrick’s Breastplate, by Marilyn McEntyre, the verse that says, “Christ to comfort and restore me.”  There is a poem included in that section, a poem that is fitting for those with or without a religious affiliation.  The poem was triggered by seeing an acre of valuable, arable land sink into the river.  It is “The Slip” by Wendell Barry:

The maker moves – in the unmade, stirring the water until – it clouds, dark beneath the surface, – stirring and darkening the soul until pain – perceives new possibility.  There is nothing – to do but learn and wait, return to work – on what remains.  Seed will sprout in the scar. – Though death is in the healing, it will heal.

This is what she says in her commentary following the poem: “Three truths emerge conspicuously from this little passage that offer a durable way of understanding comfort and restoration: (1) there is nothing to do but learn, wait and return to work on what remains, (2) seed will sprout in the scar, and (3) healing and death are not always mutually exclusive.”

At this point in our journey, I am earnestly searching for the sprouts that are emerging in the scars left by the Parkinson’s and Parkinson’s Dementia.  Some are easily apparent, others still in hiding.

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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?