“If not for me, the world would have missed….”   The Hospice Chaplain began his message with that question during the Memorial Service last Thursday evening led by Midland Hospice, the organization that sponsors the Grief Support Groups I attend.   

It is not unusual for people to be so self-deprecating that they find it hard to presume to suggest they have made a difference in the world.  It seems arrogant to talk as if we are God’s gift to the world.  If we happen to be in the mode of feeling sorry for ourselves, we will claim we have done nothing anyone will miss.  If we have had a critical parent or spouse or close friend, we may have concluded that just as they have said about us, we do not measure up. 

Sometimes it is actually our inflated ego that sabotages our ability to finish that sentence with anything of substance.  What I mean by that is we sometimes demand that for something to qualify as an achievement that would be missed, it has to be something so much better than what the ordinary folks can do that we received accolades for it. 

What ordinary things have you done?  They are likely to be the things that the world would have missed most.  That you have survived what you have been through is a remarkable accomplishment — no matter how it compares to anyone else’s accomplishments.

The Chaplain was very insightful when he followed that question with some clarification.  He pointed out rightly that most of us struggle with memories of things we did not do well, times we were impatient, harsh, unsympathetic, times we did not do what we should have done, had we been better caregivers.  He urged us to set those thoughts aside for the moment, and focus on what we did do for our Loved Ones.

I have admitted here more than once that the most painful memories are memories of just how debilitated Mary Ann was getting and how little I allowed that to enter my awareness.  I was not always as sympathic and understanding of her limitations as I should have been.  This morning, a simple question some neighbors asked when we crossed paths at the Farmer’s Market planted a seed that sprouted twenty or thirty minutes later.  The question was about cooking, did I do the cooking for Mary Ann.  I admitted my limitations in that area, but answered yes.   Later, as I was leaving, my mind wandered back to that conversation.  A silly claim that I had made came to mind, that I made the best peanut butter and jelly toast around.  I remembered toasting the bread to exactly the color that she liked, cutting it into four squares and feeding it to Mary Ann, making sure each bite had some jelly and peanut butter in it.  I often added two slices of crisp bacon, each cut in half so that every quarter of the toast had a half slice of bacon on it.  I had a certain order of squares so that she would not have too much dry toast in any one bite.  I anticipated when she would need a drink.  Thinking about that brought back the painful feelings to a level I had not felt in the last three weeks or so.  It was not that impossibly intense level that that could hit like a brick during the first weeks, but it was painful. 

I remembered how good it felt to be able to feed her in a way that brought her some pleasant moments.  I longed to be able to do that again.   As that pain settled in (it stayed for a while), I realized that feeding her that peanut butter and jelly toast with bacon was something that she might have missed, had I not been caring for her.  Obviously, I can’t know what would have happened if I had not existed — whether someone else would have done it.  That is not the point.  I did do it.  I made a difference in her world, just as she did in mine. 

There are, of course, some obvious ways of finishing a sentence like that.  I suspect our Children and Grandchildren would have missed mine and/or Mary Ann’s presence in the world.  Those are easy answers.  It is a healthy exercise to think about the impact we have had, the ordinary impact, just being a part of people’s lives.  Simply having answered the Call to Live by continuing through each day.  I have spent time in conversation with many suffering from depression over the years.  When someone is depressed, just trying to finish a sentence like this one is more depressing.  The Chaplain made the point that each of us in that room had survived our grief until that moment.  We had survived the death of someone we loved.  Just to have survived what we have been through, whether the loss of a Loved One or the loss of our confidence and sense of self-worth that comes whith depression — just to have survived is an achievement worth adding where the dots are in that incomplete sentence.   

There are so many things that I did not do for Mary Ann or did not do well.  She deserved better.  At the same time, I did make a difference in her life, as she did in mine.  The greatest gift we gave each other was ourselves.  We stayed in relationship with each other.  In doing so we did make a difference.  Each of us would have missed a lifetime of the other’s presence, had we not been there for one another.  As painful as it is sometimes to remember, it is comforting to remember what each of us brought to the other.  That remains.  We both get to keep those memories.

I have tried to write about our experience honestly.  To do so has required my revealing the harsh realities of painfully ordinary people.  I could try to create the illusion that we are a saintly household above all the weaknesses and failures and missteps that plague regular folks.  I could try, but this blog is not fiction.  It is too much work to make up stuff and keep it all straight.

I got up this morning after a night of watching her, feeling for her pulse, putting my hand on her chest to be sure she is breathing, getting up and putting my ear next to her mouth to be sure I could hear the breath going in and out.  I was tired and grumpy and angry.  Why does she have to be so stubborn?  Why can’t she just let go?  What a jerk I am to be angry at someone who has suffered so for so long and is now in the throes of dying!  I just can’t stand seeing her weak and vulnerable and in pain.  She would hate it!  She is a proud and strong-willed person, not about to be found to be weak.  I am not angry at her.  I am scared and sad and in pain with absolutely no one to blame.

I suppose I could waste a lot of time and energy being angry at God, but pain and suffering are not God’s idea.  God often gets the blame for the bad stuff (usually perpetrated by people doing the opposite of what He has asked us to do).  God more rarely gets credit for bothering to give us the breath of life and everything we just assume is our right, belongs to us.  I can’t waste my limited stamina being angry with the only One who can actually help both Mary Ann and me as we pass through this transition in our lives.

I wish I could cry, but I think the tears are waiting until this is over.  Every day seems like an entire lifetime.  This morning I was grumpy and angry.  I went to the computer to find that one of the other two in our online Lewy Body Dementia Spouses group at the same stage we are in lost her husband finally this morning.  Here is what I wrote to her:

My thoughts are with you.  We are still in that time that has extended beyond the fear of the end to a longing for it to be over.  Rest now from your and Philip’s winding, uphill, exhausting and exciting journey to this point.  I wish you well as you take the best of what Philip has brought into your life, discover who you will become now that he is not with you here, and find joy and fulfillment when finally the pain finds a quiet place to remain as your own adventure continues.

Somehow reflecting on her loss, helped me regain a bit of perspective.  My anger and grumpiness are just a function of feeling utterly helpless, struggling to accept something I don’t want to accept, already missing horribly someone who has been in the center of my life for decades.  Yes, we could irritate the Hell out of each other sometimes, but that is precisely because we matter so much to each other.

The lifetime lived today included treating sores (none open yet), inserting Tylenol suppositories, cleaning and turning bones stretched with bruised skin over them, administering Morphine before the three times of turning to lessen the pain revealed by her grimacing as we worked on her.

The lifetime lived today included good friend and former co-worker Jim and Joanna, hugs and conversation and prayer.  A full, hot meal appeared at the door, delivered by Shari, member of our little Spiritual Formation group that meets for a couple of hours weekly.  Good Buddy Jimmy came by bearing a gift and concern for us.

Today’s lifetime included moments with Granddaughter Chloe, lots of words and acts of support for one another between Daughter Lisa, Son Micah, Daughter-in-Law Becky.  Today included the return of Son-in-Law Denis and Granddaughters, Abigail (who now wants to be called Abby) and Ashlyn, both full of energy and grateful to be in Mom’s arms again after being gone so long.

In today’s lifetime our downstairs bedroom and family room have become a campground.  It is very good that our small town home has three full bathrooms now that we have finished the downstairs and many people in it.

During this lifetime, the one lived today, fatigue has been a constant presence.  The consensus was that it would be good for me to go into the bedroom with Mary Ann, shut the door and just rest. Grumpy Grandpa is not their favorite family member.  I did so at least three times in this lifetime, today.  It helped.  Nothing can remove the tired with which I woke up, but it helped.

Lifetimes include sunshine and storms.  Today began with rumbling thunder, and moments ago the power went off for a moment, turning off the computer and the oxygen machine.  Needless to say, both are working again.

This day’s lifetime will now continue into the night.  At least intellectually, I have determined that it is not necessary for us to be awake and with Mary Ann at the moment of her death.  We love her and she knows it.  We have cared for her and doted on her for days.  Micah asked Lisa how long she has been here.  It has been eleven days that this watch has been going on.  It actually started two days earlier. We would love to have the privilege of surrounding her at that moment.  It is, however, not necessary for me to try to stay awake all night checking her breathing.  While I know that intellectually, we will see if knowing that has even a shred of influence on my insides and my actions.

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Here we go again!  Last night included a number of times up, suggesting that we were cresting the hill on the way back to hallucinations.  During the night, they were not as intense as I expect them to be the next couple of nights (hopefully only a couple) before there is any realistic hope of a break from them.

This morning she started trying to get up very early.  I managed to get her back in bed a number of times until about 7am.  I gave up on that strategy and got her up.

The truth is, I am more frustrated with my reaction to the hallucinations than I am the hallucinations themselves.  I want to become able to take them in stride and respond without getting grumpy.  I apologized for being so grumpy and explained to her that I was frustrated from trying to deal with them for so long and feeling helpless to do anything about them, especially with no medical help from a competent doctor at the moment.  I was a little surprised that she responded in a way that suggested what I said had found a path through the hallucinations to Mary Ann herself.  She seemed to understand what I was saying, recognizing especially the issue of trying to deal with this with no doctor in the picture yet. In fact she managed to describe of whom she was thinking well enough to determine that she was suggesting a local Neurologist whom we have used in the past (when she had a stroke), a doctor we like.  He is not likely to have the specialized knowledge that we need, but it is worth a try.

At the moment, I have not received return calls from two contacts made last week.  I am disappointed, since in one case a nurse from a dementia clinic was supposed to phone with answers to my questions about Lewy Body Dementia.  In the other case, I left a message on an answering machine. The only option from which I have the information I need that would allow us to proceed is the one I find the most distasteful.  It would involve a few days in the hospital.  The hospital has always thrown Mary Ann for a loop.  In each case there was pretty much a psychotic break from which we never really regained the lost ground.

Today, after our conversation, Mary Ann managed to stay seated long enough for me to get a shower.  I gave her the morning pills and got her breakfast.  It was not too long thereafter that she ended up back in bed.  She said she wanted to go to the bathroom, but she fainted to such an extent that I could not get her on the toilet stool.  I put her back in bed and she has been there ever since.  That was around 9:30am.  It is now almost 4pm.

Volunteer Tamara, came at 10am to give me a chance to nap if we had had a difficult night.  The timing was perfect since this was the first bad night in the last five.  When Tamara was with Mary Ann last Monday evening in a regular Volunteer slot, it was obvious to her that I had not slept much either in the prior 8 days of Mary Ann’s intense hallucinating.  She suggested the option of adding a nap time option on Saturday and one other day next week.

Volunteer Coordinator Mary and I are talking about adding a Saturday time slot regularly just for that possibility.  There is no way to be sure when bad nights will come, but having the time to nap or just get away for a while is helpful.  This morning I was able to nap for a couple of hours and also leave the house to do a couple of errands before Tamara was due to leave at 1pm.

While, since Mary Ann has slept so long, I would have been able to nap today, I would not have been able to get out to do the errands.  I could not have known in advance that she would sleep most of the day.

What lies ahead is still unknown.  Of course, that is always true, but there are not even clear expectations.  The pattern from before the increase in dosage of Seroquel was that Mary Ann would hallucinate for two days and three nights, then sleep for two days, then have a transition day during which the most lucid moments came. Then the hallucinating would begin again.  Since this disease is so erratic in its presentation, using the word “pattern” is pretty silly.  It does what it will do when it chooses — and that is that.

…It is about 9:30pm now.  She slept through until about 6:30pm.  She had indidcated that she wanted something to eat, but by the time we got to the table, she was no longer able to speak intelligibly.  I couldn’t figure out what she wanted or if she still wanted anything.  I just held her for a while.  At that point, she couldn’t sit up straight — almost fell off the chair.  I did manage to get her to take some spoonfuls of applesauce.  Finally, she just could not respond in any way.  It was tough to get her from the dining room chair to the transfer chair.

I managed to get her to the bed, but by then it was apparent that there had been some intestinal activity.  She was almost completely limp, but I needed to get her to the toilet stool, cleaned and changed and back into bed.  If last Saturday’s struggle with that task was a 10, this one was a 9.9.  It all got done and she ended up back in bed.  I was physically as exhausted as I was last Saturday.  I was not as emotionally exhausted.  For whatever reason, I kept my cool during this one.  I just did what needed to be done.  I hope some progress has actually been made in dealing with that problem.  Admittedly, I was much more rested today than I was last Saturday.

I settled on the deck for some devotional reading.  It was a beautiful evening, warm, but with a pleasant breeze.  After a short time there, I saw on the video monitor that Mary Ann was moving.  I went in to check.  She was able to speak more clearly.  She wanted to eat something. This time it was some vanilla ice cream with hot fudge and pecans.  After eating, she watched Dr. House for a half hour or so, and has now taken her bedtime pills and gone back to bed.

Today while she was lying in bed, on occasion she would be there with eyes open, talking to people only she could see.  While we were sitting next to one another in front of the television before she finally went to bed, she was doing the same, this time with her eyes closed.

Sleeping all day and having moved into the hallucination cycle leads me to expect a more difficult night tonight than last night.  She appears to be restless at the moment.

…This time it was another trip for #2.  This time it was at least a 9.95 compared to last Saturday’s 10.  She was sort of dead weight thrughout, but including enough involuntary twisting and moving her weight against what I was trying to do as I sought to hold her up, that I almost could not get the task done.  If nothing in this short and chubby body gets broken, pulled or herniated, I am going to be a force to be reckoned with physically.  This is like going to the gym multiple times a day.

I had better close, otherwise I may be writing all night and have nothing left to write about tomorrow — unlikely!

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I felt pretty low this morning. She was up some during the night, but not as bad as some nights.   Mary Ann’s dementia was pretty strong.  Her words were still pretty much unintelligible. She insisted on getting up very early.  I was not sure if she would ever calm down.  She was hallucinating and grumpy.  I felt pretty much trapped, barely able to manage a shower and responding to my own call of nature with Mary Ann up and moving. I felt unusually tired, not just physically.

She finally did become more subdued, putting her head on the table as she sat.  She ended up in bed and was only up for a small breakfast and a very small lunch.  At lunch I had to hold her head up to get any food in her mouth.  Later in the day, she was up for a short time when Volunteer Coordinator Mary phoned and brought us Baskin & Robbins ice cream.  Mary Ann ate only a very few spoons of ice cream with me standing up beside her holding her head and upper body up, feeding her while Mary held the cup.  She then pretty much fainted and I took her back to bed.

She has had no supper either.  Once in the afternoon she did get up for a very short time.  She stood up to go in the kitchen to get something to eat and when she got near the bedroom door, she changed her mind and went back to bed.  She has at various times been doing a lot of vocalizing and jerking when lying in bed ostensibly asleep.

I have no clear expectation concerning how she will react to removing the additional dose of Seroquel she had been taking for eight days. This is the second day with only the evening dose. I am pretty apprehensive about the impact of the change.

It is easy to feel very helpless in the face of things over which we have no control.  Losing the care of the doctor on whom we have depended for so long, who has performed veritable miracles with medications over the years, was just another evidence of our vulnerability.

What has happened throughout the day today has provided a glimmer of possibility — only a glimmer, but at least something.  Talking with the folks at hospice, phoning a couple Psychologists in the city whom I know and respect, began to produce some results.  Both Psychologists called back with helpful information, the Hospice Nurse made her weekly visit and had done some checking, the Hospice Social Worker phoned and came over with some helpful information. Then Volunteer Coordinator Mary brought us the ice cream treats.  I am still bone tired.  I don’t know what that means exactly, but it sounds as I feel.

As tired as I feel, there is also the feeling that we are beginning to regain a little control in a situation that is hopelessly out of control.  It may only be an illusion, but if it is, it is a helpful illusion.

At the suggestion of one of the Psychologists, I have contacted a Senior Diagnostics program at a local hospital.  Apparently the Psychiatrist in charge is especially capable of dealing with complex clusters of symptoms and diseases — that certainly is Mary Ann.  The person with whom I spoke on the phone knew about Lewy Body Dementia and seemed to understand that it had to be treated differently from Alzheimer’s Dementia. While a few days in the hospital would be among the last things either of us would choose, at least it is an option.

The other Psychologist gave me the name and number of a Neuro-Psychologist whom he knows well and respects very much.  While a Psychologist is not the one who prescribes the medications, he/she always has a close relationship with a Psychiatrist who can do so.

The Hospice Nurse had talked with their Medical Director, a Physician in Kansas City, about our situation.  She indicated that if we don’t get someone soon, he can make sure we have the medicines we need.

The Hospice Social Worker reviewed the residential options and will do more checking on those.  She provided an idea of costs, indicating the layers from least expensive of having help here at home (of course our preference) to the next layer of small care centers that are in homes with very personal care to the larger nursing homes that accommodate those with dementia.  She mentioned one not far that a Social Worker friend had declared to be wonderful.  A clearer picture of options helps fuel the feeling of having some little bit of power in this situation, some choices.

I also sent the fax to the Neurologist who declined to continue to treat the hallucinations.  I asked if we should still plan on keeping out next appointment in a few months since Mary Ann still has the Parkinson’s, which he has treated for so long.  Then I asked if he would still respond to requests for refills of the medications he has currently prescribed for Mary Ann.

There was one especially interesting sidelight to the day.  Many months ago a request came through the online group of Caregiving Spouses of those with some form of Lewy Body Dementia.  It was from someone in the Chicago area who writes articles targeting Seniors for a Health Insurance provider’s magazine.  The magazine just goes to enrollees in Northern Illinois (if I understand correctly).  When the request came, she was looking for Seniors who did Blogging and had an Illinois connection.  Both Mary Ann and I grew up in Northern Illinois (Aurora).  I responded, but heard no more.

Yesterday she emailed and today interviewed me on the phone.  She had great questions about our situation, how and why I started blogging and what purpose it serves in our situation.  It was just nice to have someone from completely outside our circle spend forty-five minutes paying attention to our situation.  Now that I am not in a circumstances that provide much feedback, it felt good to hear someone who is actually a writer assessing my blog posts in such a positive way.  I have no way to judge the quality of the writing.  I just need to write to get this stuff out of my gut.

When she asked one question, what popped into my mind and out of my mouth was very revealing to both of us.  All through the day I am thinking about what is happening in terms of how and what I might write about it.  I realized that I actually feel as if I am not alone when things happen, especially things that push me past my limits.  Whether or not it is true, I feel as if you who read this are part of what is going on; you notice us; and, judging from the occasional comment, you are concerned about us.  I realize that sounds very self-serving and ego-centric.  It is.  I admit it — but it sure helps.

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.

One foot is in Juarez, Mexico and the other in El Paso, Texas.  I bring no political agenda to this analogy to where Mary Ann is now living.  She lives on the border between two worlds, one visible to others, the other only visible to her.  There are uncontrolled border crossings with no hope of closing the border and controlling the traffic in the foreseeable future.

In fact, she has one foot on one side and one on the other.  There are not always clear indications which side is which.  She apparently holds dual citizenship.  She is documented in both places.  Some days I think she is only on a temporary visitor’s visa to the hallucination side, residing in reality.  Other days I am afraid that it is a permanent visa leading to full citizenship on the hallucination side of the border.

I took some comfort this morning that Volunteer Jan got to see and hear Mary Ann while she was standing on the border between the hallucination side and the reality side, switching with ease from one side to the other with no cue as to when she was where.  It was, of course, clear when Mary Ann was talking to me where she was standing.  At that moment I was a dozen or more miles away at the Lake, mostly sitting in the van vegetating.

After another night of hallucinations and confusion, she got up painfully early, had breakfast and then crashed just before Volunteer Jan arrived.  After a couple of hours sleeping, she got up, and Jan got her lunch (along with some less pleasant duties — sorry, Jan).  It was then that Jan experienced the multiple border crossings.

By the time I got home about an hour later, Mary Ann was napping with her head on the table in front of her chair.  After a while I asked and she chose to go in and lie down in bed.  I probably should also be napping, but here I am writing this.  It is impossible to work on a post while she is awake.

At this very moment, I suspect the Youth of the congregation are coming to the climax of the musical, Godspell.  I realized that we would most certainly not be able to go together to the evening dinner and performance last night.  I thought we might be able to attend the matinée this afternoon.  It was not in the cards.  Mary Ann’s vacillating between hallucinations and deep sleep just won’t allow that option.  I also am too wasted to enjoy it.  My ministry has always been filled with wonderful relationships with Youth.  I focussed on ministering especially to high school Youth for 18 years of my ministry, including three years teaching at a large parochial high school.

As a result of the importance to me of that ministry, I find great power and joy in experiencing the journey Youth are on.  They experience life as if it were being lived under magnification.  Everything is intense and vivid.  Last year I missed the performance of Godspell.  There are many unbelievably talented Youth in the congregation. I heard a CD of their performance last year.  It was not only powerful because I know and care about so many of the kids, but because is was so professionally done.  Just listening to the recorded musical last year produced a lump in my throat and water in my eyes.  As vulnerable as I am at the moment, it is probably best I am not there.  I might have embarrassed myself.

Decisions have to be made about how to proceed now from here, given our life on the border.  I emailed the online Yahoo group of Caregiver Spouses of those with Lewy Body Dementia about yesterday’s and recent challenges with Mary Ann and my ability to care for her.  The responses came from a thorough understanding of our circumstances since those folks live with this situation day in and day out.  Some have been through and are past what we are now going through.  Some are in the same place.  Some are looking at our situation as descriptive of what is to come for them. They empathized and reflected back the painful reality that I will be no good to anyone if I try to go beyond the limits of what I can handle for too long.

My first intention is to call the Neurologist, describe what has been happening and ask how best to go about eliminating the recently added morning dose of Seroquel.  For a week now, the problem it is supposed to help has gotten measurably worse.  I suspect he might again suggest going to a local Neuro-Psychiatrist to check out other options for medication.  I have little hope that there is anyone more competent in dealing with this particular form of dementia located in our community which is much smaller than Kansas City.

In addition, I will continue to experiment with paid help to see what the best times might be and how much we can afford.  I realize a dementia unit will be many times more expensive than having some help here.  The challenge is determining where the tipping point is that shifts the weight from home to facility.  My physical and mental stamina are a part of what will weigh into that measurement.

…It is now a couple of hours later in the afternoon. The doorbell rang a few moments ago.  It was former parishioner Dave, delivering a rhubarb pie that had been saved back to bring to us from the reception after the production of Godspell this afternoon.  You know, the fact that as I was writing about missing the production and the kids, someone was thinking of us warms my insides. After retiring almost two years ago, it is a comfort to think that while gone, maybe not forgotten!

Mary Ann is still in bed and not interested in getting up.  Her eyes are open, but she wants to remain there in bed.  I hope she is willing to get up for a while yet today.  Maybe she is resting up for a busy night of hallucinations/delusions/dreams mixed with reality.  I certainly hope not.  I did nap for an hour this afternoon, but I do not look forward to being up tonight.

She did get up to have a little applesauce, but has now gone back to bed. She was hallucinating almost constantly while awake in bed and out of bed to the table, while eating, and back into bed.  Enough for now.  Maybe I can try the early to bed option on the outside chance sleep will be possible.

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.

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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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.

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 finally stopped sitting up with a new hallucination/delusion/dream filling her reality some time before 3am.  This was my 6:30am morning to arise and get ready for the 7:30am Spiritual Formation group, so I didn’t gain a full half-night’s sleep. It still helped some.  The Group conversation is always very helpful in the matter of maintaining some sort of equilibrium (a hard thing to come by lately).

Mary Ann slept through until Bath Aide Zandra came to do her morning prep.  That allowed me the full time in the group conversation without needing to leave to do a support task for Mary Ann.

By the time Zandra left, Landcaper Sheila and a helper came to so some major work around the street side, as well as the entrance area at the side of the house continuing to the back deck.  She is constructing it to provide a rich palette of color and texture with an eye toward winter scape elements.  Since we are not in a position to get out much, we are bringing a stimulating environment into view from every window of the house.  There are plants that will invite butterflies and hummingbirds in the mix, many that bloom all season long, some that mark the movement of the seasons, some that strengthen the sense of seclusion in the waterfall area.

Having something very engaging drawing attention that used different psychic muscles from those tapped in the caregiving tasks seemed to help.  Mary Ann was not experiencing the same level of intensity in that has made the last couple of days so difficult, and she rested in her chair without hopping up as much as has been the recent pattern.  I was able to go out and check on the project, enjoying the prospect of seeing all the flowers blooming in months to come.

Mary Ann rode with me to get Glory Days Pizza slices for lunch.  Just before Volunteer Coordinator Mary came to stay with Mary Ann for two and a half hours, she lay down for a nap.  While Mary was at the house, I was able to spend time over a cup of coffee with friend and former parishioner John in conversation.  It was helpful just to have the time away, as well as having a listening ear to bend.  John does a good job of listening, and giving appropriate feedback without presuming to be able to fix the situation.

While I was gone, Mary made that rhubarb pie that Mary Ann and I both love very much (mentioned in an earlier post).  It was great to enjoy a piece of that pie after a supper of Lasagna from the freezer that Daughter Lisa had prepared one of the last times she visited, along with fresh asparagus from the country market. Mary brought a beef, potatoes and veggie dinner that we can heat up tomorrow.

Sometime in midday, we received a reminder phone call that our annual carpet cleaning is tomorrow.  We had gotten a reminder post card a week ago, so it should have been no surprise.  Since my mind has been so dominated by the escalating frustration of reaching and passing for a time the ability to handle the intensity of Mary Ann’s needs, it just didn’t register that I needed to get the furniture out of the house, and figure out where to go while the carpets are cleaned and then given time to dry.  In fact I had accepted the offer of a very caring former parishioner who has treated us with great respect, to bring us coffee tomorrow afternoon for a visit.

Gratefully, Jay was willing to meet us for lunch at McFarland’s Restaurant, a place where Mary Ann feels very comfortable.  That alternative also provided a place to be during the carpet cleaning.  We still need to figure out where to go for a while as they dry.  The issue is always finding an accessible place with a bathroom situation that allows me to help Mary Ann.

While I am certainly not at my best at the moment in terms of stamina, I was able this evening to get much of the furniture moved out of the way (downstairs or into the garage).  I am hoping that the one who comes to clean will be willing to help move a table a few feet off the carpet and into the sun room area.

There has been no progress today on contacting the Neurologist about the possibility of increasing dosage of the medication that is supposed to reduce hallucinations (while unfortunately increasing the daytime sleeping and the vulnerability to fainting spells).  The day was active enough that I just didn’t get it done.  I have not yet received a report from the Hospice Social Worker about the possibility of some paid help to cover a morning or two in the week.  Those two things are important since they offer the possibility of actually making a difference in our situation.

I hesitate to say it for fear things will change any minute, but so far tonight, Mary Ann has just had a few needs for turning in bed and using the commode.  She has been in bed for about two and a half hours.  It has been storming loudly off and on for most of that time.  The storms are expected to last almost until morning.  Right now they are noisy but not dangerous. They don’t seem to be bothering her.

As I finished that last paragraph, she started moving.  When I went in, she wanted to get up and go home.  Then I offered her a snack, since she had eaten very little for supper other than the pie.  As I fed her she moved into a very odd sort of mode that made it very difficult to feed her.  She was bouncing as if she was starting to get up.  She did that a couple of times when I had the spoon at her mouth.  At a couple of points it seemed as if she was partially fainting.  After I finally got the last of the applesauce into her mouth, she started bouncing as if trying to get up.  When I asked what she was going to do she didn’t know. I laid her back down and she began talking about everyone getting up and leaving.

Clearly, I spoke too soon.  Judging from her current state of mind, it is reasonable to expect another difficult night.  It is just not getting any better.  I keep thinking we will make it through this round of hallucinating and have a couple of days of sleep with minimal hallucinating interspersed with lucidity.  She is moving back into a pretty intense mode of hallucinations and delusions.  I just hope I can keep her in bed as much as possible, again hoping and praying that she will just fall asleep for the rest of the night.  It is now about 12:15am.

I had better finish this and get bed on the outside chance that there will be some sleeping fitted in before morning.

I suppose last night ranks as one of the worst nights we have had.  Mary Ann kept sitting up and responding to hallucinations and delusions and dreams that were her reality at the moment when she sat up.  Each time it was brand new and  real to her.  She seemed to have no awareness that five or ten minutes before there had been a completely different reality to which she was responding.

It just never stopped.  When I saw 3am come around, I hoped that then she might finally let go and sleep, as has happened in the past.  It just never stopped.  I suppose on occasion I slept as long as fifteen minutes when there was that much time between new encounters with her world.

Finally, not long after 6am, I simply could no longer convince her to stay in bed.  I gave up trying.  I turned off the alarm that was set for 7:45am to get her ready for her Bible Study and tried to figure out how to get her to stay secure while I showered.  I knew she wouldn’t stay put in her chair, but I got all her basic needs met, the television going, water nearby and just took the shower.

She was, of course on the floor when I came out.  I checked to see if she was hurt.  She was not.  I put a pillow under her head and let her stay there while I finished.  That way I knew she would be safe and secure.  She said she was comfortable.

Then I got her dressed and fed and ready to go to her Tuesday morning group.  Since she got up so early, she was ready about an hour early.  She continued to hallucinate, but finally lay her head on the little table in front of her chair.  It is hard to describe the sense of relief that came with Mary Ann dozing and ceasing being driven by hallucinations and delusions and living dreams., constantly demanding my full attention.  I was able to get my own breakfast, the wash started, clean the commode, make beds and get things in the van so that I could awaken her and get her to her group on time.

I have admitted before, and I do so again, that this expression of the Parkinson’s Disease Dementia puts me in direct contact with the outer limits of my capacity to endure this Caregiving role here at home.  I am disappointed that I can’t handle it with grace and endurance.  Actually, this expression of Mary Ann’s disease puts me in contact with those outer limits from the other side of my capacity to cope.

There was a last minute bathroom trip, but we did make it to her Bible Study group. She apparently rested some but did all right at the group meeting.

After the meeting we stopped to pick up her favorite steak soup and lemon meringue pie.  I wasn’t sure she would be able to eat, since she had her head down and seemed to be dozing all the while we were in the van.  I did feed her some of the soup and pie.

As soon as that was done we had to get to appointments I had made for us with the Optometrist.  Considering the Hospice trajectory and the fact that a recent visit to an Ophthalmologist (M.D. eye doctor) had revealed that her vision problems are neurological, not mechanical, I wondered about how appropriate it was for Mary Ann to get new glasses.  I decided to ask her if she wanted the appointment so that future possibilities did not determine present action.  Whatever she wanted to do was fine with me.  When we got there, she was just too tired to keep her eyes open for an exam.  She slept with her head on her lap in the waiting room, while my eyes were examined.

My prescription had changed quite a bit in the five years since I last bought glasses.  The cataracts are just in the beginning stages.  My Dad had glaucoma, so I was interested that the eye pressure had increased — not enough to be certain it is a problem.  There was one unsettling observation.  One eye has a hint of the possibility of Macular Degeneration beginning.  I know too many who suffer much from that mostly untreatable condition to look forward to that potentiality.

We got home just in time for Hospice Nurse Emily’s weekly visit.  For her records and my need to share, I describe the last couple of days and admitted that I need help.  I asked her to help me come up with alternatives.  She said that she would call Hospice Social Worker Kristen, since she is the one with the resource information.  Emily took Mary Ann’s vitals, blood pressure at 200/108 — relevant information when considering whether to resume the medication that raises BP to help reduce the fainting spells (see yesterday’s post on our dilemma in that regard).

While Nurse Emily was taking Mary Ann’s vitals, the phone rang.  It was Hospice Social Worker Kristen asking if she could come over to do her monthly visit.  Emily had not yet phoned her.  Interesting timing.

Shortly after Emily left, Kristin arrived.  She got the full and detailed description of the last two days and our medication dilemma.  I was, of course, doing my usual opening of the verbal safety valve by which I survive.  I told her that I planned to phone the Neurologist to see whether he recommends increasing the Seroquel.  I can handle the sleeping (of which she does too much) but I cannot handle the streaming hallucinations for very long, especially when they remove the option of sleep.  The Seroquel’s purpose is to help diminish hallucinations, but it increases the sleep time.  Again, it is a matter of survival.

For her part, Kristen said she would check with a team of four who do some private pay help for other Hospice clients.  The cost per hour is significantly less than the Agency help we now use sometimes.  Because of the unpredictability of the night time needs, we talked about the possibility of one or two mornings a week on a regular basis.  I could use the time to sleep, if that is what is needed, or just get away.  Adding that to the wonderful gift of Volunteers from church who fill slots of time when they are available to do so, might help bring this task back into my range of ability to handle it.

Even at the lower rate, the cost will be challenging.  After the last couple of days, it doesn’t seem to be an option to try to continue without more help.  This evening already, Mary Ann has been hallucinating, requiring trips to the bedroom to explain again and again that it is not morning but evening, it is Tuesday, not Wednesday, there are no painters here.  As I said in last night’s post, I say again tonight, I hope at some point she wears down and goes to sleep for the rest of the night.  She may have napped enough today to gain a second wind.  I have not napped and have no second wind, or, for that matter, any of the first wind left.

It helped to talk with the Hospice folks this afternoon, as well as some of the church Staff this morning after I took Mary Ann to her group.  One thing has become apparent to me.  I do a lot of talking and blogging and meditating and celebrating the natural beauty that is now in view at our house.  Those things help me process what is going on, keep things in perspective, vent some of my feelings.  All of that is very good.  It does not, however change the harsh realities of the difficulty of this task.  None of those tools magically creates super human powers that allow me to handle whatever comes.  I am still a painfully ordinary someone, far too selfish, irritable, whining way too much, with limited stamina and strength.  It is time to figure out a way to get more help.  I am still committed to doing this here at our home.

For now, it continues to appear that tonight will be a repeat of last night.

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.

Almost every moment Mary Ann was awake today, I was never sure who she was seeing or where she thought we were.  She talked to people, the little girl, her Mother.  She whispered to me that there was some woman standing “right there” inside the van when I was trying to give her some medicine.  In the car after coming out of Perkin’s Restaurant, she asked why “he” gave directions to Laramie (Wyoming, the state in which her estranged brother lives).

That is the rock.  The hard place includes two things.  One is that she has continued to faint often.  There are times during the day when it seems more likely, but it can happen any time.  They often result in a subsequent nap.  That is the second thing of the two things in the hard place.  She has slept during much of the day many days.

The medication of choice to control hallucinations is Seroquel.  The most prominent side effect is that it causes drowsiness and can result in lots of sleeping, day or night.  Another concern the Neurologist mentioned is that Seroquel increases the vulnerability to fainting due to low blood pressure (orthostatic hypotension).  By increasing the dosage of Seroquel, the other problems worsen.   If we reduce the Seroquel, the hallucinations would be likely to increase.

As I have mentioned many times before, the medicine that is used to keep blood pressure up, reducing the fainting keeps her blood pressure at a dangerously high level.  Today in the Dermatologist’s office her BP was 208/93.  That is without taking the med to raise her BP so that she faints less often.

We turn one way and face up against the rock.  When we turn the other way, we face up against the hard place. It is a difficult spot in which to remain for very long without beginning to tire of it.

Because of the unique character of Parkinson’s Disease Dementia/Lewy Body Dementia, there is a sensitivity to sedative type medications that precludes the use of any but a very few.  The choices are very limited.  The problem with trying other meds for hallucinations to see if they will work is that the sensitivity of LBD and PDD results in losses that cannot be regained.  We can’t just try things for a while.  Mary Ann is now on the medications that are most recommended for treating the problems caused by PDD/LBD.

This spot between a rock and a hard place seems to be the place we will be living for the indefinite future.  We choose to live in an intentional state of denial, but it is not easy to maintain it.  While I always hope that the latest sign of decline is transitory and better times will return, it is beginning to seem that the better times are long gone.  The Neurologist of someone in the online LBD spouses group told her that some time her husband would have one of his fainting spells and just not come back. Sometimes having a support system that includes lots of information about the disease one is dealing with includes too much information.  Some things are better not to know.

I have rushed to the bedroom a dozen or two times as I have been writing the last few paragraphs.  Mary Ann is hallucinating and pretty adversarial and angry that I don’t respond appropriately to things that simply make sense to me or have no corporeal existence outside of Mary Ann’s mind.  I can only wait until, hopefully, she just wears out and goes to sleep.  She has been in and out of fainting most of the times I have gone to the bedroom to get her back into bed.  In fact she has been vocalizing some while fainting, sometimes acting in a belligerent way while in that state.

This morning I knew problems were beginning.  She was up a number of times very early, and when she could no longer stay in bed, she had that intensity that signals the beginning of the streaming hallucinations.  There was some fainting early on, but Bath Aide Zandra didn’t have problems with her.  After Zandra left, I got her breakfast and pills.  She sat in her chair for a while in pop up mode, but soon put her head down.  Finally, she wanted to lie down.

After lying down, I got her up to go to the Dermatologist appointment she has been asking about for a couple of weeks, often thinking it was the day of the appointment. She was concerned about some bumps she felt on her head.  There were no problems discovered.  The nurse asked Mary Ann what she was doing at one point.  Mary Ann said she was separating her fingers.  It was the thread or gold chain hallucination.

I just headed back to the bedroom again.  She asked if they served breakfast and lunch.  I confirmed that she thought it was a motel.  I tried to convince her that she was in her bedroom.  She responded angrily that I kept moving her from house to house.  I asked if she wanted some applesauce.  She said yes.  Then while I was getting it, she got up, walked around the end of the bed to the area between the beds and fell.  She did not hurt herself, but that spot is one from which it is almost impossible to extricate her.  The only alternative was to lift her straight up and on to the bed.  My back reminded me just how risky that move is.  That  area between the beds is too small to get the lift in and manage to put the sling around her.

I got her around to the side of the bed and started feeding her the applesauce.  She fainted, completely falling into me since I was sitting next to her.  Even when finally she was awake and ready to eat again, I had to hold her up and try to keep her hand away from her mouth so that I could get the applesauce in.  Sometimes when I am feeding her, she moves her hand to her mouth as if she is feeding herself.  I have to try to figure out how to get the food around her hand and into her mouth.  She gets irritated when I push her hand out of the way to get to her mouth.

I finally got her back into bed.  I am sure she will be up again soon.  Needless to say, this has not been one of our better days!  Here we go again — again demanding lifting and shifting and adjusting her in bed. Each time I have gone to help her there has been the same need for the physically demanding help.  This is another one of those times I am wondering how long I will last.

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