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.

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.

After she settled around 9pm last evening, she slept soundly until 2pm this afternoon.  There was one interruption as the Hospice Aide tried to get her up for a shower.  She told the Aide she was too tired.  I agreed that she needed the sleep more than a shower.

When she got up at 2pm, after getting dressed, eating something and taking pills, she sat for a while.  After lying in bed so long, the Orthostatic Hypotension (fainting due to low blood pressure when standing) was really creating problems.  She had some healthy intestinal production, but fainted numerous times before, after and during that activity.

Every time she stood up she fainted.  Even so, she kept standing up again and again.  Eventually, she was fainting so much, I put her back into bed.  She slept for another hour or two.

This morning, shades for the sun room were installed (three of the four — one needed to be remade to fit better).  The activity did not bother Mary Ann.  Also, while she was sleeping, Volunteer Coordinator Mary, brought over some flowers for Mary Ann’s birthday tomorrow.  Mary arranged the flowers and put them in a vase.  At the same time that was happening, Landscaper Sheila, who had smelled leaking gas at the meter when she was working outside the last couple of days, phoned the Gas company to check for a leak.  The truck arrived and the Gas Service Worker checked and found a leak that will need a substantial repair. He put some tape on it for a temporary repair until the full repair is done in a couple of weeks. A new meter will be put in also.

Of course the new landscaping will be torn up and a Forsythia bush removed in the process.  Sheila will prepare the area and replant the bush when the time comes.

After Mary Ann’s nap, she got up in time to enjoy the meal that friends and former parishioners Don and Edie brought over at about 6pm.  Don was the cook.  It was a great meal.  Mary Ann was very tired and struggled to eat, even with my help.

During the afternoon, former parishioners John and Marilyn phoned and then brought over Marilyn’s traditional gift for Mary Ann.  It is a three layer chocolate cake with thick fluffy white frosting covered with coconut.  Because of the frosting it needs to be refrigerated.  The cake looks as if it would be almost too rich to eat, especially with frosting so thick.  On the contrary, it is very light, melting into wonderful waves of chocolaty gentle sweetness.

After the cake, Mary Ann seemed to drift into what looked almost as if she had fainted.  While Don and Edie cleaned up the kitchen, I got Mary Ann into bed for another nap.   Don and Edie and I talked for quite a while.  After they left, I got Mary Ann up to get her pajamas on and take her pills.  She is now back in bed.

The Parkinson’s Specialist’s Nurse and I connected this morning.  She reported that Dr. Pahwa suggests trying an additional half of a Seroquel pill in the morning in addition to her evening dose.  We are to try that for just a few days and call in to let him know what is happening.  The last time we increased the Seroquel, the dementia got very much worse for three days before there was the hoped for improvement.  From the way the suggestion was reported, I inferred that there is not much hope this will help and maybe some fear that the dementia will worsen — if that’s possible.

Last night because Mary Ann slept so well, I was able to get a full night’s sleep.  It sure felt good.  I am feeling greedy enough tonight to hope and pray for another night of sleep.  Whether or not that hope is realized and prayer answered remains to be seen.

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.

[Too tired to edit — publishing as is.]

It has been a very long time since there was so much fainting in one day.   Anyone who is not okay with explicit talk about BM’s should probably pass on this post.  I was grateful for a three or four hour nap in the middle of the day and more grateful when the ordeal was over this evening and bedtime arrived.

I am a seasoned veteran in what I call waste management.  It is just part of helping someone who no longer can handle those duties on her own.  I am used to the fainting spells.  They no longer scare me.  It is when the two intertwine for all the hours she is awake that it calls into question my physical capacity to do this task.

I am not grossed out by it.  I am not pushed to a high level of frustration by it.  I am just tired and sore, grateful for a break from it now that she is in bed.  Yesterday, I mentioned that Mary Ann’s blood pressure was a very low normal when the Hospice Nurse took it.  I observed that resting blood pressure that low did not bode well for what might be so when she stands up for a while.

I meant to take her BP this morning, but did not remember to do so.  As a result, I am not sure yet about whether or not to start the Midodrine, which raises her BP and reduces the fainting but keeps her BP dangerously high.

Mary Ann got up fairly late today.  It was apparent from the morning trip to the bathroom that the fainting was a problem.  We managed to get her breakfast done.  Then the bathroom trips began.  She felt that she needed to go, but there was little production.  Each time she got on the stool, she fainted.  Each time she stood up from it she fainted.  My role, as I have mentioned before, is to hold her upper body back so that she does not fall forward off the stool.

She was fainting so much that she couldn’t even sit up in her chair when I got her back out into the living room.  I just took her into the bedroom and got her into bed.  She slept for three or four hours.

After she got up, I fed her lunch and the bathroom trips began in earnest.  There was more production during the afternoon.  Once down there would be a some activity.  Then I would pull her up, hold her up and do clean up, almost always including (sorry) getting out some that would not come on its own.  Then as that was going on, she would faint again.  Trying to get her into the sitting position when she is only partially conscious and holding herself stiff, takes all the strength I can muster.  The torso has some pretty powerful muscles.

Each time we went in, there would two or three repeats of that same pattern with occasionally a few minutes of just sitting there holding herself up. During those times, I stayed close to her so that I could get there immediately when she popped up.

Most of the next couple of hours contained those trips, each about the same in terms of my role.  When Mary Ann was not in the bathroom, she was in pop up mode.  She has absolutely no awareness of the risks of getting up no matter how often she faints or how much I remind her not to get up without my helping.  At one point, I had to click the seat belt on her transfer chair to slow her popping up so that I could finish folding the clothes from the dryer.

What I have described above is a very normal activity for Caregivers of those with Lewy Body Dementia.  I can hardly complain.  Others have a far more difficult time than do I.  I write in such detail first of all for selfish reasons.  It helps me to put into words and sort of “get off my chest” just how difficult a day can be.  I hope that the detail also provides a point of contact for those who are experiencing the very same thing but have no one to talk with about it.

I also hope that those of you who have friends or family or acquaintances who are caring for someone, will realize what they are going through and cut them a little slack.  If they are whining, they are doing so for good reason.  You don’t have to try to fix their situation, just listen patiently without immediately changing the subject to something that is going on in your life or tell them about all the other people who have it worse than they do.

Tonight, I am wondering if there is a direct correlation between the low blood pressure fainting issue and Mary Ann’s ability to keep on track mentally.  Shortly before going to bed, she stood up and called me over.  I asked what she was doing.  She seemed distressed and said she was leaning against a wall.  Her eyes were open, not slammed shut as happens sometimes.  She was in the middle of the living room, in front of the television.  When I said there was no wall, she responded, “Did they take it down?” (Probably a memory of the removal of walls in during the sun room construction.)

Moments later in the bedroom, she asked what day it was.  I answered, “Saturday.”  Then she asked me if I was preaching tomorrow.  I asked her when the last time I preached was.  She said, “Last Sunday.”  I asked her if she remembered that I had retired almost two years ago and had not preached since.  She just looked puzzled.

While she does get confused and have delusions and hallucinations and dreams that she cannot tell from reality, those interactions tonight, seemed a little extra odd.  That raised in my mind the question of the impact of so many times today that her blood pressure was too low to keep an adequate supply of blood flowing to her brain.  I am wondering what sort of cumulative effect that has.  If that is the case, it complicates the current decision not to give Mary Ann the Midodrine that raises her BP to harmful level.  There is nothing easy about dealing with this combination of diseases and debilities.

f 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.

“…and there was light.”  This afternoon twelve feet of light flooded into our little townhome.  It seems as if not only have we added a six foot by nine foot area to our living space, but a deck, waterfall, and back yard filled with trees.  By contrast to the closed in feel of the interior living space in our little townhome, it now feels expansive and open. 

Sometimes it surprises me just how powerful the living, growing outdoors filled with birds and little beasts and thriving greenery can be for me.  I do not share the theology of Avatar, but I share the awe and wonder and respect for the healing influence of the creation. 

On this project, we are using the Design/Build approach.  I think that means something like flying by the seat of our pants as each question/option/decision comes up.  Gratefully, the contractor and carpenters have had very many years of experience doing this sort of project. 

“Would you like the ceiliing raised?  How about a ceiling fan?  If so, what size, color, style of lights?  Is the wall paper staying or going?  How many and where should the outlets go?  Do you want a railing on the short section by the stairs on the south side, a railing on the east side, a railing on the west side, anything on the north side?  How high should the posts be on the east side and what sort of blind will you get for it?  How wide should the steps be?  How wide and thick should the interior support post be?  Where should the switches for the ceiling fan, its light, and the outdoor spots go?  What should be used to transition from cork floor to carpet?  Do you want the sliding glass door to open in the middle or on the side, what side?  What about blinds for all that glass? Verticle? What style? Color? Fabric? Vinyl?

So far it looks even better than I had hoped.  Mary Ann has been skeptical about the project, but when the walls came down today, she seemed to like it very much. 

The noise has been deafening.  We had hung out in the kitchen at the little ice cream table most of the time.  When Mary Ann has been napping in the bedroom, she has seemed completely oblivious to the machine-gun rattle of the drills and pneumatic tools.  At some level, the sounds of construction are music to my ears as the project takes shape.

The last two days have gone pretty well for Mary Ann.  She attended he Tuesday morning group and was fairly alert there.  We ate out at Perkins so that she could have pancakes.  She let me feed them to her.  She consumed about 80% of three buttermilk pancakes and all of two pieces of bacon.  She had eaten a good breakfast and had a couple of cookies at her Bible study.   She ate a small but adequate supper, with a couple of scoops of ice cream to finish it off. 

The Hospice Nurse came by for a while to check in and ask her routine questions about how MA is doing.  She is, of course, interested especially in any changes.  Mary Ann’s blood pressure was high again, 208/100.  It is reassuring just to have someone who listens and writes down what is going on.  It takes a little of the pressure off that sense that I have to be on top of everything and catch problems on my own.  It has seemed a little overwhelming sometimes to feel as if I need to be able to figure out what is going on with Mary Ann and when what is going on warrants an intervention of some sort. 

Stacey came by to show us some more options for verticle blinds to provide privacy with all that glass opening into our living space.  She also brought some more paint samples since Mary Ann had mentioned some ideas for colors to use in repainting the main upstairs interior walls.  I was pretty excited that we came up with what we want to use, and Mary Ann had significant input. 

Last evening Volunteer Patrice spent time with Mary Ann, while I served as an interview Guinea Pig for a Doctoral Student, Gretchen, Daughter of Don and Edie, whom I have mentioned in earlier posts.  That interview was done at PT’s, so I got some time away from the house, and Mary Ann got a break from me.  It is always good to have something different and disengage from the role at home for a while. 

Last night she slept well.  I was grateful, since the time change conbined with late nights writing posts caught up with me, and I headed to bed without writing last night. 

Today has gone very well.  Mary Ann sat in view of the monitor this morning without getting up, so that I could remain with the Spiritual Formation Group downstairs most of the time.

Bath Aide Zandra has struggled with fainting issues interfering with a safe shower experience.  Last Monday, Mary Ann had not yet taken her meds by the time Zandra arrived.  She had no problems with her and enjoyed that she was able to converse with Mary Ann.  For the last couple of weeks, Mary Ann has been very tired and unresponsive as well as fainting often while showering and dressing. 

This morning, I purposely waited and did not give her the morning meds before Zandra came.  Again, she did very well.  Mary Ann did not faint and was conversant with Zandra.  I have been convinced that most often the fainting has come when the morning meds started kicking in.  Many of the meds have the side effect of lowering blood pressure.  This week’s experience seems to confirm that the meds are a triggering element.  I am going to try to remember to hold off on meds until after her shower on those days.  She still has Orthostatic Hypotension, but maybe we can at least minimize the risk of it acting up during her shower. 

Friend and Volunteer Coordinator Mary came by this afternoon to spend time with Mary Ann while I ran some errands related to the remodel project.  She broght some flowers, always very much appreciated by both Mary Ann and me.  Flowers brighten our sometimes stale environment. 

Mary Ann ate a fairly light supper, and then a bit ago she got up from bed to eat a half sandwich.  I hope a full stomach will help her sleep well.  There are, of coruse no guarantees about that.  We have some company from Kansas City tomorrow, a visit we are both very much looking forward to.  We have been friends with the crew that is coming for more than 35 years.

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.

She was sitting up in the chair in front of the television.  Her head started jerking forward and back up.  Her arms fell to the sides of the transfer chair.  She was out.   She had not stood up, she was just sitting there when it happened.  Medical folks call it Syncope.  You and I call it fainting. passing out. 

Why did it happen?  Her blood pressure dropped until it was no longer high enough to fight the pull of gravity.  There was no longer enough blood pumping to adequately supply her brain. 

It didn’t just happen once, or twice, or three times.  I lost count.  It was probably five or six times, one right after the other.  It has happened before, but never that many times in a row.  Only two or three times before has it happened while sitting down, unless it was right after standing up or walking or trying to get up — not just sitting down.

There is no explanation of which I am aware as to why the blood pressure is too high sometimes and too low other times.  It has been high almost her entire adult life.  That is called Hypertension.  She also has Orthostatic Hypotension.  That means, when she stands up, sometimes the Autonomic Nervous System [ANS] does not trigger the smooth muscles surrounding the arteries quickly enough to constrict to compensate for the additional gravitational pull down on the blood in her circulatory system.  Read the side effects on very many of the common medications we take.  They warn that there may be dizziness when standing up while taking the med.  That dizziness is a moment of Orthostatic Hypotension, low blood pressure when standing up. 

It sometimes happens to folks who have had Parkinson’s Disease for a long time.  It very often happens to those who have a form of Dementia with Lewy Bodies.  Parkinson’s Disease Dementia is one of those forms.  Little bits of material called Lewy Bodies form on brain cells in the part of the brain that runs the Parasympathetic System of the ANS. 

What all that means is that there is an insidious process that makes life still more difficult to some who are already in a very tough battle.  I know what the explanations are for high and low blood pressure in Mary Ann’s circumstances.  What I don’t know, nor does anyone else, is why for many weeks it has hovered at a frighteningly high level with no fainting spells, and now it is running high at times during the day and plummeting at other times. 

She had fainted some earlier this morning when she was up and down, using the commode. When it happens there, I have to hold her up with my shoulder to keep her from slumping forward.   Then after maybe ten or fifteen minutes of multiple times fainting while sitting in her transfer chair in front of the television, the Hospice Aide Sonya arrived for her first time giving Mary Ann a shower, washing her hair and dressing her.   I thought there was not a chance that Sonya would be able to handle her, even with the new shower chair with arms. 

Mary Ann did not faint once during all the ups and downs of getting into the shower chair, transfering back to the transfer chair she sits in during the day.  Why not??  Why does she faint one time and not another.  This is such a nasty disease, refusing to submit to patterns that can be anticipated. 

Now comes the question, do I resume giving her the Midodrine, a medication that raises blood pressure?  Her heart and kidneys are being damaged by high blood pressure.  I will take her BP in the morning and decide what to do.  If it is exceedingly high, I will not give her the Midodrine.  If it is exceedingly low, I will.  Of course, it is not as simple as that.  If her BP is normal, what should I do?  Normal is not high enough to guard against moving too low when she stands.  It often changes from way too high when she first gets up to way too low in an hour. 

This is an old story heard many times by those who have reading these posts since I began writing this blog just about a year ago now.  You have heard me talk about this many times before.  Here it is again.  It no longer scares me.  It just makes it harder to deal with Mary Ann’s penchant for hopping up and heading off, especially when she is hallucinating.  I have to actually sit a few feet from her every moment she is awake and alert, since she will stand and may fall soon thereafter.   She is completely unaware of any concern.  She doesn’t know she has fainted after she has become conscious again. 

She surprised me and slept fairly well last night.  She did all right at breakfast, fainted for a while, had her bath, ate lunch as Hospice Nurse Jennifer filled out some forms and took her BP.  It was 100 over something, still very low.   Mary Ann sat for a while and then headed to the bedroom and slept for four or five hours. 

I got her up for supper.  We went out again to pick up ice cream and a tankard of PT’s coffee to reheat in the morning (I’m a hopeless fan).   Since she was again in pop-up mode, I needed to get her in the car, seat belted in, so that I could relax and know that she was secure.   The ice cream was just an excuse for getting her into a secure place for a while.  You believe that, right?

Not long after eating the ice cream, she headed off to bed.  In spite of the long nap, at least at the moment she is sleeping.  It may not last. 

One of the people in the online Lewy Body Spouses group lost her husband today.  She described in detail the rapid decline and the process of dying.  My words to her were these:

You have been a mainstay in this group for a long time.  You have put words to what we have been experiencing.  You described what awaits us.  My condolences are laced with anticipation, as a result, I feel vividly what you have just experienced and pray for the peace Charlie now has to free you to find peace here, understanding that the peace does not void the pain you feel.  That is the price of love. 

Our turn will come.

We met with two folks from a local Hospice program for about an hour and a half this afternoon.  The construction has begun on the sunroom.  Lisa has arrived.  Three of the anticipated events have been (are being) realized. 

Lisa came in late in the evening.  Mary Ann was in bed but awake enough to get to see her and talk for a moment.  It will be interesting to see which Mary Ann will be present with Lisa during these three days, sleeping Mary Ann, hallucinating Mary Ann or lucid Mary Ann.  It could be all three who appear.  This form of dementia is so odd and unpredictable in how it presents itself. 

The folks from Hospice were, of course, very pleasant and engaging.  The one who took the lead was Nurse Lisa (same first name as our Daughter – lest you be confused).  She had managed to get information from the doctors, at least the Cardiologist.   She had read it over carefully and was fully aware of Mary Ann’s situation, at least to the extent of what was covered by the information she had received. 

They asked lots of questions, and listened carefully to the account of Mary Ann’s current situation and recent history.  There is a doctor in Kansas City who is charged with determining if Mary Ann’s problems rise to the level required for enrollment in Hospice.  The three general problems that will be evaluated are her heart issues, her late stage Parkinson’s and her dementia.  It is one of those three that must be at a certain level.   

One understandable but mildly disappointing observation made by Nurse Lisa was that Mary Ann’s dementia was certainly not bad enough to qualify her.  Understand, I would be happy to hear that she isn’t yet far enough along to require Hospice care.  Nurse Lisa made that comment after Mary Ann got up from a nap and I brought her to the table with us.  Mary Ann was alert enough to present herself well. 

Parkinson’s Disease Dementia [PDD]  is a Dementia with Lewy Bodies [LBD].  It is different from Senile Dementia or Alzheimer’s Dementia.   PDD/LBD does not move in a steady decline but erratically jumps between severe dementia, especially hallucinations, to lucidity, or sleep.  All of the LBD Spouses in the online group I am in know about “showtime.”  People with this disease can present themselves in a way that looks and sounds as if they are functioning very well.  Later this evening Mary Ann was hallucinating almost constantly, just as she had early in the day.

One of the challenges with this disease is finding people who understand it, or educating them so that they do.  We will find out by Friday what the doctor says about the assessment of her problems and their implications for enrolling in Hospice.  Since I will be out of town on retreat, they will call our Daughter Lisa.  By the way, our Daughter Lisa worked in a Hospice program in South Carolina for a few years.  She said that there and in the Hospice programs she has checked on the Internet, a problem called “Failure to Thrive” has often been used.  That is used when there are multiple problems, including weight loss.  Mary Ann’s height/weight ratio fits well within the range of those who qualify for other hospice programs. 

Nurse Lisa and the other Hospice rep named Chris mentioned that 20% of those who enroll in Hospice, eventually graduate.  That means they get better and no longer fit the criteria for enrollment.   If Mary Ann is enrolled, we will set graduation as a goal.  While the resources and support provided by Hospice appear to be wonderful, we have a pretty effective system already and would like to extend our quality time together.  Bythe way, a recent study is suggesting that those enrolled in Hospice generally live longer than those who are not enrolled in hospice.  The LBD Caregiving Spouses online group posted that information this morning, well before this afternoon’s meeting with Hospice. 

This morning we experienced the classic frustration of conflicting medical problems and treatments.  When Bath Aide Zandra was doing the morning shower, hair washing, dressing routine, Mary Ann fainted two or three times — once she bumped her head since Zandra had her hands full with soap and hand held shower sprayer and could not catch her in time.   I suggested to Zandra that maybe I could give her the Midodrine that helps raise her blood pressure before Zandra comes to see if it will help.  Then when Parish Nurse Margaret was here later in the morning to spend a couple of hours with Mary Ann so that I could have a break, her blood pressure measured 204/100.   There seems to be no way to keep her from experiencing a low blood pressure syncope (fainting) without raising her blood pressure dangerously high.  Imagine how high it would have been if I had given her a Midodrine this morning before Zandra came.

The jury is still out on whether eliminating the Amantidine is more good than bad (see last night’s post). 

After the meeting with Hospice, we managed to get to a Lenten Worship Service at church and the meal following.  At the meal, she was willing to let me feed her.  She ate a good quantity of food.  She usually resists letting me feed her in public.  It may be that there are so many church folks there who have been very accepting and very helpful to us, that Mary Ann simply feels secure enough not to be so concerned about what they think of her as she is being fed. 

The very noisy construction crew have been doing demolition and then preparation for putting in the subfloor of the new sun room.  It will be hard to put that project out of my mind so that I can relax for the three days I will be on retreat.    The time is set for John to come to the center and spend time talking tomorrow evening (see last night’s post)

It seems like such an important transitional time for us.  It will not be clear how important it is or is not until weeks or months later as this journey unfolds.  The Spiritual Formation Group’s conversation this morning centered on the matter of  looking for past times that ended up serving as teaching moments for God to shape who we are becoming. 

I guess it is still energizing and exciting to realize that even as Geezers we are growing and  becoming more than we have been and less than we will be.  It is sort of like Adolescence without the pimples!  (Constipation instead.)

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I am beginning this post shortly after 2pm today.  Mary Ann settled into full sleep last night some time between 12am and 1am.  Other than two trips to the commode, she has been sleeping ever since. 

Just a few minutes ago she called my name, I went in and got her on the commode.  I told her about all the snow, she responded appropriately and clearly.  In moments, she was back to being unable to respond.  All she could do was make a grunt.  I tried to talk her into getting dressed.  She was just too non-responsive to manage that. 

I managed to get the Exelon patch changed, but she was not interested in taking her meds.  I don’t think she could have awakened enough to get the meds swallowed.  I reluctantly put her pj pants back on and let her lie back down.  She was having trouble continuing to sit erect on the side of the bed.

As always, I am grateful to have gotten a full night’s sleep.  While I don’t like losing her presence when she is in the daytime sleeping mode, sometimes she is fairly lucid for a while after she has slept off the last bout with streaming hallucinations.

Sooo close!!  Almost made it!  At about 2:30pm I decided to get something to eat.  After I got something heated and started eating I heard her.  By then it was 2:45pm.  I asked if she was ready to get up.  She said she was.  I suggested getting dressed before pills and food but thought better of it when she couldn’t seem to geet her eyes open. 

She drank some apple juice (with Miralax) and took her pills — I put them in her mouth and put the straw to her mouth to take with with the juice as is now the norm.  I fed her a container of yogurt.  Then I started suggesting cereal options or whatever might interest her to eat.  I remembered Mary’s jello (green jello, pineapple, cottage cheese and Cool Whip).   She wanted that and ate a good-sized serving.  It should be helpful since there is protein, calcium, fruit and carbs in it. 

Then I joined her at the table and finished my bowl of beef and noodles.  She asked where “Dad” was.  I think that would be me.  When I asked who she was thought I was and she answered “Mom.”  At that point, I suspect she had connected better and was just being silly — not sure about that. 

Anyway, as soon as we got back to the bedroom to get her dressed — you guessed it.  She needed to lie down again for some more napping.   That happened a little after 3pm.

Mary Ann got up again at about 6:45pm.  There was an odd irrational hope that the fainting issue had just sort of left her.  At the same time, I knew it would return eventually.  Earlier today I worked on re-writing the fax to the Neurologist and had mention dropping the Midodrine until the fainting returns.  I knew it was wishful thinking to expect the fainting to stay away.

Well, it has returned.  She fainted twice while in the bathroom, once on the stool and once when I returned her to the transfer chair.  She fainted again when she decided to stand up while sitting in front of the television.   What an insidious disease this is.  Not every person who is diagnosed with Parkinson’s will have to deal with quite this many symptoms in such severity.  It is the major heart problem combined with this form of dementia that has produced so many debilitating symptoms. 

It was not long before she decided she wanted to go back to bed.  She had said she did not want to eat when she got up this time.  I asked her again, listing lots of things as we were ready for her to get back into bed.  She agreed to go out to the table.  Again, she chose Mary’s jello.  I fed her a large dish of it. 

She is now back in bed.  It is 7:15pm, which means she was only up a half hour.  I am readying myself mentally for a difficult night.  She has slept through days and nights before, but it seems unlikely to me that she will manage to sleep through tonight also.   The most I can do to prepare is to get to bed early enough to increase the odds of getting some sleep even if it is a bad night.  I got a good night’s sleep last night.  That will help.

My day was spent mostly reading posts of those in the online Caregiver Spouses group and the Kansas Birders.  I managed to rewrite the fax to the Neurologist and update it.  I did get outside to shovel off the deck and a path to the birdfeeders.  It was good to get a little exercise and get the birds some food that is accessible in six or so inches of heavy snow.  I am often annoyed on days like this that I still manage to procrastinate on many of the tasks on my list of things needing to be done.  There is in the back of my mind the likelihood that as soon as I get the preparations made for doing whatever it is, Mary Ann will be up and in need.  It is as good a reason as any to put off until tomorrow what could be done today.   (Isn’t that how that saying goes?)

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This is the person whose Autonomic Nervous System has not been able to maintain a consistent level of blood pressure for the last few years.  It has vacillated up and down and down and up again.  Now the pressure gauge in her body seems to be stuck on high.

After consistently high blood pressure readings yesterday (see last night’s post), this morning at 2am I decided to take her blood pressure.  We spent a couple of hours up most of the time between 1am and 3am.  At 2am it was 200/105.  I decided to take a reading this morning when she first got up so that I could decide whether or not to give her the morning dose of Midodrine.  The Midodine raises her blood pressure to keep her from fainting from the Orthostatic Hypotension — sudden drop in blood pressure when standing, resulting in fainting, what the doctors call syncope.

Her blood pressure reading at 8:45am was 220/120.  Needless to say, I chose not to give her this morning’s dose of Midodrine.  I will keep track of her blood pressure and phone the Cardiologist tomorrow if it is still stuck at such a high level.  Actually, I will call no matter what to report this long stretch of high BP and ask if there is something that would be safe for me to give her to lower it when it is this high.  I also need to try to take her BP when she is standing to see if it lowers then or remains high.  At the Cardiologist’s office last Thursday, her BP was consistently measuring higher than yesterday and today’s numbers here at home even when we stood her up and ARNP Angela measured it.

Last night was not an easy one at least for part of the night.  I went to bed very early for me.  By around midnight or a little later, she started getting up, disturbed by the people.  At one point she wanted to get up and out of bed for a while to get rid of the people in her head.  I was encouraged by the way she said that, realizing (or saying for my benefit) that they were in her head, not actually in the house.

I reacted differently from the past when I have gotten irritated and insistent with her.  I encouraged her and helped her lie down, reminding her that staying awake would make them worse instead of better.  Each time she lay down, I returned to my bed but stayed awake, listening intently to her.  Whenever I heard her mumbling or moving around, I asked if I could help.  In some cases I went over at talked with her a bit.  At one point when I was in bed, she asked what the man was doing in my bed, meaning me.  I reminded her who I was.  It was odd that she seemed to be talking to me but at the same time about me as if I was someone else.  I assume it is a version of the Capgras Delusion I have talked about in earlier posts — the perception that a person has been substituted for another (as in the body snatcher movies).

I stayed awake most of the time for about an hour and a half as we interacted off and on.  Then she settled and slept through until morning, other than the usual commode trips.

I got up earlier than usual this morning so that I could get ready for going to the 11am worship service.  When Mary Ann got up, she asked what we were doing today.  I helped her tune in to the fact that it was Sunday, and that I was planning for us to go to the 11am service, then out to eat at the Brick Oven, and watch the Super Bowl later in the day.

When eating the yogurt, drinking juice and taking pills, she was in eyes-tightly-shut mode.  I needed to feed her again this morning.  When I offered the usual options for cereal, instead of picking one, she said she was tired and wanted to lie down.  She was pretty unstable from the time she got out of bed.

I did make a point of weighing her to see if she is retaining fluid.  Her feet have been swollen the last couple of days, including this morning. Her weight was almost exactly the same as it had been the last time she weighed herself on that scale.  I will continue to monitor that as long as her feet remain swollen.

After she made a trip to the bathroom, when I asked her if she still wanted to lie down, she said her stomach hurt and, yes, she wanted to lie down.  She was concerned about lying down, knowing that I wanted to go to church.  Those words and actions, stomach hurting and wanting to lie down, usually asssociate with intestinal activity at some point. I knew that major intestinal activity would be far easier to deal with here at home than at church.  There would have been no way to manipulate her into going at that point, nor would it have made sense to try given those circumstances.  It is now well past the time church would have started and she is still sleeping.  I am sitting here at the computer with my suit pants on.  I guess it is time to change into stay at home clothes.

She slept for about four hours.  I should have gotten her up at some point to go to the bathroom.  Even though she had a night time disposable, it leaked. The bedding needed changing anyway.  The PJ’s and bedding are in the washer. I waited a little longer than I should have to give her a pill and get her up since I had ended up sitting down and reading, listening to the waterfall and birds in the back yard through the speaker made to bring outdoor sounds in.  Last night’s time up with Mary Ann caught up with me and I wanted to have some extra time just to rest.  She called for me soon after the time her med timer had gone off.

I took her blood pressure when she got up.  The reading was 165/105, not good but better than earlier in the day.  I cooked a bratwurst at her request.  Bratwurst and chips sounds like good Super Bowl Sunday food.  She handled the bite-sized slices of bratwurst on her own, as well as the dish of ice cream from the supply we bought at the store yesterday.

After lunch I asked her if she was willing to let me check her blood pressure while she was standing.  It was considerably lower, 130/80.  It was a little harder to hear clearly through the stethoscope since she was moving some.  It may have been a little higher than that, but certainly not lower.  When she has had problems with fainting, her BP has been very much lower than that when standing, and sometimes sitting.  Both numbers have been under a hundred.  The time she took the Tilt Table test at the hospital to verify that she had Orthostatic Hypotension, as soon as the table moved her from a lying position to 70% of a standing position, her BP dropped from a high reading, to 50/30.  A few minutes later she fainted.  I will keep checking her BP, but I would rather have a little fainting than allow it to stay as high as it has been the last few days.

A few minutes ago she showed me her glasses.  The ear piece on one side had come out of the hinge completely.  It will need to be reglued — hopefully possible.  We will take it in tomorrow.  I can only guess that spending so much time with her head down on the dining room table or the little table in front of her chair has resulted in loosening that ear piece.  I finally found an old pair of glasses she could use in the mean time.  It was almost comical in a sad sort of way that I found two old pairs that were not useable since she had fallen on them, in each case scratching one of the lenses so that it is completely useless. One of those falls took her to the Emergency Room with a giant hematoma on her forehead the size of her fist.

At suppertime Mary Ann’s blood pressure measured 165/95, again, too high, but not as high as this morning.  She struggled to eat supper and refused to allow me to help.  The last time I offered and she refused, I asked her why she wouldn’t let me help.  She was completely shut down, her face almost in the plate, getting nothing into her mouth.  Her answer was, “It is all I have left.”

She went to bed at about 7pm, watched the game from there, took her pills.  It was not long after that that she needed a snack — no surprise since she had eaten very little at supper.  She seems to be sleeping at the moment.  That, of course, can change at any time.

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Hallucinations ruled until about 1am or so last night.  Then she slept through with only one or two commode trips until around 11:15am this morning.  I didn’t get up unitl 9:30am.  Nothing ever stays the same.  Yesterday that was not a good thing.  Today it was a good thing.  She gave very little indication of having hallucinations.  She was awake most of the day until she went to bed tonight at about 8pm.  I will not presume to guess what tonight will have to offer.

After Mary Ann got up and took pills with some yogurt, we began talking about lunch already.  I suggested the possibility of going out, listing a few of her favorite spots.  She did not really seem interested.  I am wondering if the need for me to help her eat is beginning to diminish her interest in eating in public.  Some point at which she seems especially sharp, I will ask her about that issue.

I offered to make scrambled eggs and bacon.  She took me up on that offer.  As I was getting the eggs out, I noticed the untouched left over baked potato from a couple of days ago. I realized that would make great fried potatoes.  About a thousand dirty pans, dishes, pieces of silverware, cooking utensils, and bowls later, I delivered Mary Ann, two scrambled eggs, seasoned with parsley flakes, garlic and onion powder, salt and pepper, covered with shredded cheese that had melted on top, home made bread (Maureen’s) toasted and buttered, fried potatoes and onions, two slices of thick bacon, all served on a warm plate.

Have I gone crazy???  It all started with sighting that potato.  Then I fried some eggs for myself, which I covered with the wonderful Peach Salsa that I order by the case from Texas.  From the time I started cooking to the end of cleaning the thousand dirty items or putting them into the dishwasher, wiping off the stove and counter, must have been close to two hours.  This cooking business with all the accompanying cleaning up duties remains on the outer edge of my domestic capabilities.

Gratefully, Maureen had brought for the freezer some very tasty vegetable beef soup to go with the home made bread.  That was supper.  Mary Ann needed help with that, as well as some help with the two scoops of ice cream from B&R that we had picked up from there on the way home from the late afternoon doctor’s appointment.

While our visits are usually with the Cardiologisit himself, today we met with Advanced Registered Nurse Practitioner [ARNP] Angela .  She had seen Mary Ann once when she was in the hospital last fall.  She knows her case well. It was especially comforting to hear from her that they (she and the Cardiologist) often talk about our situation.  They appreciate that we are traveling a very narrow road of functionality, playing meds that do opposite things against one another to get a result that allows us to survive.

It was scary today when three blood pressure readings at different times in the appointment all were in the mid-200’s over the low 100’s, even when she was standing.  Because of her Orthostatic Hypotension (low BP when standing up), normally the standing reading is much lower. Not so today.  The fear, of course, is a massive stroke, as well as long term damage to her heart and kidneys.  We all know that.  At home the readings have been in the 160 to 180 over 90 to 100.  If we reduce the Midodrine that Mary Ann takes to raise her BP, she starts fainting.

I am going to reduce the dosage of Midodrine a little (cut the noon pill in half) to see if we can do so without resuming the fainting.  One irony is that the Seroquel we have been raising to reduce the hallucinations, has the side effect of increasing the likelihood of fainting. Another irony is that Mary Ann is taking a heart medication after her heart attacks a few years ago.  That medicine’s purpose is to reduce heart pain by lowering blood pressure.  Another of Mary Ann’s Parkinson’s meds (to reduce the dyskinetic movements caused by another Parkinson’s med, the main one) can cause hallucinations and fainting.  The main Parkinson’s med can cause hallucinations, fainting as well as the dyskinetic movements.  Without that med, Mary Ann cannot move at all.

As the primary Caregiver, it is my job to observe and help inform the doctors prescribing these medicines, since I am with her 24/7.  I have been given permission to adjust the Midodrine and the Sinamet (the main Parkinson’s med) within certain limits as seems appropriate.

The doctors have no clear insight into how much of the problem with hallucinations is caused by medicine and how much by the disease process (Lewy Bodies on brain cells).  They don’t know how much of the fainting problem is the disease process and how much the meds. Both the disease process and the medications produce the constipation, as well as other non-motor symptoms.

My head starts to swim when I try to think through the effects of all the meds with the goal of suggesting a workable balance of all of them.  The truth is, the doctors and pharmacists are no better equipped to find that balance, since they don’t see the effects on a day to day, hour to hour basis.  When we have raised or lowered dosages of meds, Mary Ann has not always reacted the same way in adapting to the change.  Sometimes, as with the Seroquel, the change comes, and then leaves quickly, leaving no clue as to how to proceed.

For whatever reasons, the last part of last night and this morning have included sleep; today Mary Ann was lucid and did not seem to have strong hallucinations; she ate tolerably well and has been sleeping fairly calmly for the last couple of hours.  I have no idea what will come between now and the morning, nor can I even begin to guess what tomorrow will bring.

There is one note I would like to add.  It may change tomorrow.  It is likely to change soon.  Since Sunday morning’s powerful experience, I have not felt angry with Mary Ann at behaviors that frustrated me in the past.  I have been far more accepting of the challenges in caring for her.  The feelings of irritation may return soon, but for the moment, caring for her has been less draining emotionally since I haven’t spent so much time feeling angry and frustrated.

That observation makes me wonder how much of the irritability emerged from simple grief over what the disese has been taking from her and from us for twenty-three years.  Again, there is no predicting how I will feel tomorrow or the next day about behaviors that have been frustrating to me in the past.  For the moment, there is a peace and a calm that has been missing for a long time.

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It is just too soon to tell.  Mary Ann is now taking two medicines to help control the fainting due to low blood pressure when standing (Orthostatic Hypotension).  One is the standard med prescribed to control the bouts with fainting, Midodrine.  The second is a medicine prescribed off-label for helping control the BP.

I just read a post on the online of Spouse Caregivers of those with Lewy Body Dementia.  That post had specifics about their larger dose of the new med.  I have been thinking lately just how helpful it has been to be a part of that online group.

The group is a place where those who are in the throes of very difficult caregiving can vent without judgment.  In fact the opposite of judgment comes.  There are words of acceptance, affirmation of the validity of the feelings of those venting. Everyone in the group understands the crazy ups and downs that come with this disease.

Reading the many hundreds of posts over the last year or two has helped me handle things that might have frustrated me more had I not known what to expect.  I knew not only from past experience but from the group that the aftermath of the hospital stay might be a problem.

We can ask one another how her/his Loved One reacted to a particular medicine or dosage of that med.  Even alternative medications can be discovered in the posts.  There are some who see a particular doctor at the Mayo Clinic who specializes in Lewy Body Dementia.

We can talk with one another about waste management issues without having any concern for speaking in an indelicate way.  There are things that can be shared there that would not be appropriate in a blog like this.  We can talk in ways that might scare those who were not going through this particular challenge.

One thing I have gained by reading those online posts is perspective on Mary Ann’s and my situation.  The struggles of some in the group are beyond imagination.   We are among those who have been dealing with Parkinson’s the longest, but others have been dealing with the dementia much longer than we have.  Not all the spouses have Parkinson’s, but all have some form of Lewy Body Dementia or a related diagnosis.  For some the dementia has reached the last stages, where we are in the mid-range of the usual progression of the disease.  With that said, the truth is, the disesase vacillates so dramatically, that most of us have seen earlier and later stages of the disease in our Loved One’s at various times – with no warning that a change for the better or for the worse was coming.

With the perspective of the reading those posts, I celebrate how much we are still able to do, the quality of life still available to us.

Mary Ann did reasonably well today.  We slept a little later this morning, a good thing for both of us.  The morning routine is pretty time consuming, leaving too short a time to allow us to participate in a morning filled with activity at church, including a Pancake Breakfast.  We did benefit from some leftovers brought over early in the afternoon.  When she was up in the morning before her nap, she was not at her best.  There were many times that she had her eyes tightly shut as we tried to walk to and from the bathroom.

Mary Ann actually ended up in bed late in the morning for a couple of hours of napping.  After eating some of the leftovers, we went out in the car for a while, ending up with ice cream.  Our first choice for ice cream this afternoon has gone out of business, Maggie Moo’s.  The format is the same as Coldstone Creamery, only with much better quality ice cream.  We ended up at Sonic.

She was pretty alert this afternoon, and headed to bed sometime around 7pm or 7:30pm.  She has been a little restless, but as always, I am hoping for a restful night for both of us.

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