The Caregiver Calling

“Will you push me up?”  Mary Ann asks often, especially when we are out in the car.  When she asks, sometimes her head is almost completely horizontal over the console between the seats.  I usually push her up before it goes that far, even if she hasn’t asked.  I have to be careful since sometimes she is napping in that position and doesn’t want to be moved.

It happens sometimes when sitting in her chair in the living room. Especially when she has not had enough sleep, or when she shifts into the non-responsive mode, she will lean forward or in whatever direction there is something on which she can rest her arm and head.  When she starts napping in her chair, I offer to take her into the bedroom so that she can lie down.  It is not unusual for her to prefer staying in the living room if she wants to avoid taking a long nap.

When she is awake and leaning, it is always to the left.  There seems to be a natural affinity for moving to the left.  When Mary Ann is sitting at the table eating, almost without fail after a while she will be sitting with her knees and feet off the left side of the chair, eating over her lap and the floor, rather than the table where her plate is located.

It is hard for me to see that and not move her back to facing the table.  My response is not just some compulsive need for her to be sitting a certain way.  My need to move her back to facing the table comes because when she is facing to the left, the food that falls out of her hand ends up on her lap and the floor.  I then have the task of cleaning it up, hopefully before anything gets stepped on.

Mary Ann’s turning to the left at the table has been a bone of contention between us.  Sometimes she gets angry with me when I move her back to eating over her plate.  I complain about her eating over the floor making it more difficult for me because of the clean up.  I am not the noble self-less uncomplaining caregiver.

What has helped me in accepting the leaning to the left and at least trying to be less grumpy about it is the discovery that very many of the others who are Caregiving Spouses of those who have some sort of Dementia with Lewy Bodies describe the same behavior.  When someone in the online group mentioned that her Loved One couldn’t hold his head up, many responded with the same problem and still others described the leaning phenomenon.  Many of those who have been dealing with Lewy Body Dementia struggle with the same issue of trying to deal with the effect of the Disease on their Loved One’s ability to maintain a sitting up position or keep his/her head erect.

One online member suggested using a chair with arms at the table.  That suggestion is a good one.  The disadvantage is that our space is so confined that getting her in and out of an arm chair at the table is difficult.  It may, however be the lesser problem.

As I have mentioned many times before in these posts, it seems to help when a frustrating behavior can be explained by the disease we are battling.  It moves the behavior from what seems willful to something that is completely involuntary.  It moves the problem to simply another area needing a creative solution.  By the way, when I make observations on behaviors of Mary Ann that are frustrating to me, I become very grateful that Mary Ann is not writing blog posts on the things that I do that irritate her.  You think my posts are sometimes long!!  She could write volumes.

Tomorrow will be an early day since we are going to try to attend the Annual Parkinson’s Symposium sponsored by the University of Kansas Medical Center in Kansas City.  We will see how the night goes and whether or not we can manage a very early starting time.  We have to allow for an hour and a half travel time.  My hope is that we can at least make it for part of it, and that the information will be helpful.

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The phone rang this afternoon while Mary Ann was napping.  It was a former parishioner who was in trouble.  She and her husband were struggling with what to do.  They had eaten all they could of the wonderfully decadent chocolate dessert and were at a loss as to what to do with the last two pieces.  Could they bring themselves to throw them away???

When she finished describing their distressing situation, I made a remarkably generous offer.  You may not believe the level of my generosity, but here is what I offered.  I just blurted it out without even thinking.  Isn’t that the way heroes often describe their heroic acts — “I just did it without thinking.”  I told her that Mary Ann and I would eat those two pieces of dessert for her!!

She was so grateful, she and her husband brought them to our house.  It just feels good to do something to help other people when they are in need.

Last week I left the house on Tuesday evening to spend some quiet time away while a Volunteer spent time with Mary Ann.  There was one garden tomato left from a number that had been given to us.  By the time I returned that evening, there were thirteen with the a call promising more the next day, raising the total to twenty-one.  There were zucchini, a squash, a melon that had been delivered with the tomatoes that evening.  The next day the promised tomatoes came, plus some additional ones from a Volunteer who just brought some with her.  I have already eaten most of the tomatoes, and another ten came on Sunday.

Monday evening of this week after being out for a while, I came home to find a warm cobbler fresh from the oven that a former parishioner had delivered, along with a small vase filled to overflowing with brightly colored blossoms.

Today I was treated to lunch out while a Volunteer spent time with Mary Ann.  That is a monthly treat.

In the last fifteen days there has been at least one Volunteer at some time during the day on eleven of those days.  While schedules don’t usually allow Volunteers to come quite that often, it is overwhelming to think about how many people break open their busy days to make room for time at our home.  It is quite humbling to see just how thoughtful and generous people are.  The hours that Volunteer Coordinator Mary spends just scheduling all those people is a testament to that generosity.

It is hard not to feel guilty in the face of so many people in circumstances like ours, often in much more difficult circumstances, who don’t have a cadre of Volunteers and a Mary to schedule them. There are so many who are trapped in their own homes most of the time because one or both is suffering from chronic illness.  Those days when there are no Volunteers, or Mary Ann is having a bad day that keeps us in, or I have gotten sick, we have a taste of that kind of confinement and the loneliness it brings, the sensation of helplessness. As difficult as it is even with all the Volunteers, the thoughtful and generous people that surround us — as difficult as it is to manage full time caregiving, it is hard to imagine the challenge of that caregiving without support.

If you know someone in circumstances like ours, give him/her a call and ask, “What can I do to help?”  If they can’t think of anything when you call, offer to come over and help them make a list of answers to give people when they ask that question.  Then offer to check around, contact some folks who might be willing to help, ask them what on the list they would be willing to do, and schedule the doing of that task.

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Apparently I have miscounted!  It is not only Gus, Belle and the Twins who have been feeding at the wildlife sanctuary that serves also as our back deck.  They eat the food I put out for the birds.  When the fourth one was in the trap two nights ago, I saw another one coming over to commiserate.  Apparently, the twins have an older sibling, uncle, aunt or cousin. 

Yesterday morning, number five was rummaging around in the trap.   I noticed that he had a darker coat of fur than the others.  He seemed a little bigger and somewhat more active.  Tim reported that it appeared to be a very aggressive male.  He had managed to pull the sheet metal holding the handle down into the trap.  He growled at Tim all the while he was handling the trape.  The others had not done so.  We are guessing that it might very well have been Gus. 

I put the trap back out last night, in case there are more.  No one showed.  It is out there again tonight.  My hope is that the entire family is now reunited in the lush corn field to which they have been relocated.   This adventure has been a bit of a distraction for this Caregiver.   I have used the nighttime trips to the commode as Raccoon check time.  Somehow it helps make the usually frustrating nights a little more bearable. 

Just an update on the sleepless nights:  Last night Mary Ann slept like a rock.  She was sound asleep until I talked with her a few minutes before the Bath Aide arrived around 8:45am.  She does seem a bit restless yet tonight, but I am hoping sleep will come soon.  I was up early to prepare for the Spiritual Formation Group that meets at our home at 7:30am.  Tomorrow morning would allow an extra hour or so of sleep.  My hope is that tonight will allow some catching up.  At the moment it is only a hope. 

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It was 4am before Mary Ann finally went to sleep last night.  The hallucinations were vivid and constant.  The family of people and the raccoons were present much of the time, one or the other.  On two occasions I asked her whom she was talking to.  Once her answer was the raccoon; the other time it was the little girl (blue-eyed).  Today in what sounded like a lucid moment, she asked me if I was ever going to tell her about that family.  Needless to say, all I could do was respond that she would have to tell me about them, since she was the only one who could see them.

I have been going to bed early (for me) the last three nights in hopes that my presence in the bedroom might reassure her and allow her to settle.  She was restless all three nights for much of the night.  Last night it was constant until that 4am time.  She was up and moving and talking and shuffling around.  At one point, I turned on the bright overhead light with four 60watt bulbs and left it on for an hour or two in hopes that the hallucinations would be diminished by the visibility.  It did not work.  The light just made it harder to sleep.

What is an odd dimension to this time is that at least three people who have spent time with or talked with Mary Ann in the last few days have commented on how lucid and communicative she has been, more so than usual.  It makes no sense!  She is wasted, but more lucid at times.  When we are alone she is often so tired that she can hardly hold her head up, she often struggles to track interactions at all.

What makes this a little easier to deal with is the fact that what we are experiencing is not different from what many in the online spouses of those with Lewy Body Dementia.  Others in that group share often that their Loved Ones see and talk with people who are not there.  The group members refer to the lucidity with others as “showtime.”  Many of those Caregivers have to deal with others only seeing their Loved Ones when they seem very lucid.

One of my Brothers phoned to tell us of a tragic death in the extended family.  Mary Ann took the call.  She was apparently very communicative.  After the call she shared what had happened with the Volunteer.  When I returned home she shared with me what had happened.  I phoned my Brother and discovered that the death was of a different family member.  That sort of misunderstanding can certainly happen.  That kind of confusion in tracking what has been said is not unusual any longer.  When a good friend had told both of us about her daughter being pregnant, Mary Ann was convinced that her young Granddaughter was the one who had become pregnant.

What is, of course, a consequence of the sleeples nights is that not only do Mary Ann’s hallucinations get worse, but my stamina wanes and we shift from creating a good quality of life to survival mode, just getting by.  Today was a busy day, Mary Ann’s morning Bible Study had the first meeting for the fall, we had appointments for haircuts for both of us, we had an appointment at the cemetary, and a Volunteer came for the evening.  She did manage to get a couple of hours of sleep in before supper.  On the monitor, she appears to be restless again.  I am not sure I am up to another sleepless night.

The last couple of evenings Volunteers have been with Mary Ann so that I could head up to the spot with the view.  There were a number of deer to be seen, including a buck with a six or more point rack.  There were lots of bats and a few nighthawks.  I enjoy watching them.  I did a little reading — hard to do when sleep deprived (thank goodness for caffeine), and I listened to some music.

For a week Mary Ann has been taking a slightly larger dose of Seroquel which is supposed to control the hallucinations and help her sleep.  So far, the opposite has been so.  I will give it another few days, and if there is no improvement, I will increase the dosage by another increment suggested as an option by her Neurologist.  If that doesn’t work, I will fax the details of her status to the Neurologist with a request for other options that might have a chance of improving our quality of life.

As I mentioned in an email to my Brother, life is not for sissies!

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A Volunteer spent a portion of the morning with Mary Ann today.  I had a chance to head to a spot that often provides some quiet renewal time for reading, meditation, and watching for interesting birds.

This morning provided an odd combination of wildlilfe and human activity.  I enjoy sitting by a large reservoire to do some reading and thinking.  When I arrived in my spot, the weather was great.  I opened the windows, got out the binoculars and a devotional book.

There were lots of flying insects that surrounded and entered the van through the open windows, especially flies and mayflies.  I decided that since I was in their territory, I would not swat them and spend my limited time chasing them.  Actually, I realized that their presence was what was providing me with the aerial show by large numbers of Barn Swallows all around me. There were clusters of Killdeer that came noisily through at intervals.  I spotted some Cedar Waxwings in a nearby pine tree, along with lots of Kingbirds.

There were a few gulls on the water and flying around.  Later when I moved to the area below the dam, gulls were feeding at the overflow outlet where a loud rushing torrent was being released.

The Human entertainment included a fisherman not far from me.  There were lots of powerboats on the water.  There was one pulling a young woman who was tubing.  Then came the large, powerful speed boat with three young men on it.  It took a while to figure out what they were doing.  First of all, it became clear that the large objects across the back of the boat attached to a high bar, were loudspeakers producing ten or fifty or a hundred thousand decibels.  So much for the meditation.  It was the sort of music young people enjoy and old people can’t stand!

Then they started doing what they had come to do.  They were ski boarding — not just following behind the boat, but moving back and forth doing somersaults in the air.  It turned out to be genuinely entertaining.

As I watched all that activity, there was a rumbling off in the distance that got louder and louder.  I looked up at the dam, and there coming across were motorcycles — not just a few but what I would imagine was somewhere between two and three hundred of them in single file.  They were followed by about half as many cars of all sorts and colors and vintages.  In terms of my spirituality, I am something of a contemplative.  Not this morning!

After spending about as much time as was available to me, first next to the lake and then below the dam in a wildlife area, I headed up to drive across the dam. I had spotted what appeared to be a juvenile American Bald Eagle up above the dam, so I thought I would check it out.  I was treated to about fifteen minutes of that bird’s activity.  I have never before seen an eagle flying in place, sort of helicopter style.  This young Eagle did so more than once.

As I slowly continued across the top of the dam, I could see a dozen or so sail boats on the lake.  The day was exceptionally beautiful, and the white sails moving across the water added still more beauty to the experience.

As I left the lake and headed on a gravel road back to the highway, I was treated to a group of wild turkeys strutting around on the top of the hill by the road.

I was grateful for a good morning.  The day before had included an outing to a smaller lake with Mary Ann, but the night had been another restless one.  Yesterday, for some reason I had gotten in my mind that I could be more assertive in keeping us active, doing some self-care by exercising, maybe squeezing in some stimulating outings.  The sleepless night had revealed a certain futility in those hopes.

Yesterday, we both thought we had missed the Parkinson’s Symposium in Kansas City.  Mary Ann had indicated that she was not interested in going because it would demand our leaving here very early in the day, she dislikes large group activities, and she doesn’t get much out of the presentations.  I had thought about trying to go anyway, since I find them so valuable.  When I thought we had missed it today, I realized just how much I had wanted to go.  The good news is that the Symposium is next Saturday.  I decided to be assertive about our going and added the treat of checking with our KC friends about celebrating some birthdays at lunch after the Symposium.  At the moment, that is the plan.

All in all, it has been a weekend that has included some pleasant moments and some not so pleasant moments.  I guess that is the way life usually goes, no matter one’s circumstances. As always, tomorrow is another day.

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Last night when sharing our history with our hosts at dinner, the look back opened a process that has continued today.  I asked Mary Ann if she was comfortable or uncomfortable with the conversation last evening.  The questions of her were direct and personal.  She said that she did feel comfortable. 

As I mentioned in last night’s post, Mary Ann was candid about her feelings.  She was clear that she was not resentful toward God for her situation, but she was resentful toward me for moving the family from what had been home for fifteen years.   

When we moved from Kansas City to Oklahoma City, I moved five months sooner than Mary Ann and the kids.  They needed to finish school (Lisa, her Senior Year in high School and Micah, his Eighth Grade year at a Kindergarten through 8th Grade school).   

It was shortly after I moved to OKC that Mary Ann phoned from Kansas City with the news that she had been diagnosed with Parkinson’s.  Her memory of the move is colored by the pain of that diagnosis, having to deal with her feelings without my presence for support.  She had the whole load of the family while trying to process that news. 

What, in my estimation, made it more painful was that Mary Ann was adamant about keeping the diagnosis a secret.  That secret was kept through the move and on into our new life in OKC for a full five years. 

With little stamina for involvement with others since she also worked part time at first and then close to full time for the last six of our nine years there, it was hard for her to develop close friendships from which she could draw support. 

It was during that time that we experienced very poor medical care from Neurologists who had little knowledge of Parkinson’s other than the very basic medication addressing only the motor symptoms.  Since she has the early onset variety, there are more complexities than presented when it is diagnosed later in life. 

We managed to get to the annual Parkinson’s Symposium at the University of Kansas Medical Center most years while we were in OKC.  As a result, we had access to the latest and best information on Parkonson’s Disease and its treatment.  We seemed to have more information than any of the Neurologists to whom Mary Ann went during those nine years in OKC.  One Neurologist had little to say in each appointment (ten minutes, sitting across from us at his desk).  He seemed mostly to be asking us how often we thought we should be taking the one basic medicine.  The next Neurologist questioned whether or not Mary Ann had Parkinson’s and concluded that the fact that the medication for Parkinson’s seemed to be working was all in her head.  He made the gesture folks use to indicate that someone is crazy.  Then at the end of the nine years, Mary Ann was hospitalized in Tulsa in a new Parkinson’s program.  The point of the stay was to work out the medicine regimen.  The staff administering the medication missed the timing of doses, the Neurologist dismissed a basic concern for timing the medicine away from meals high in protein (regularly reaffirmed in the literature and the presentations at the Parkinson’s Symposia).  Mary Ann ended up with a complex combination of regular and timed release versions of the one basic medicine.  The new regimen simply did not work.  She became very debilitated quickly. 

It was at that time that the move to the parish here in Kansas came.  Mary Ann commented last evening that the move back to Kansas, even though not back to Kansas City itself felt good to her.  She liked being close again to our friends in Kansas City.  Mary Ann is not the sentimental sort.  For her to say that was a very significant affirmation of that friendship. 

When we moved to here, Mary Ann went to KU Med Center and some of her best years followed.  She was willing to be open about the diagnosis.  The latest of the medications that help the basic one work more effectively worked well at controlling her symptoms.  She did not work any longer and had time to get to know people here.  When finally the Volunteers were needed and began coming, friendships grew at a rapid rate, many of them. 

As I look back, I suspect that Mary Ann’s resentment of me for taking her from KC was more a function of the struggle with Parkinson’s than anything else.  The people in OKC were as warm and loving and accepting as anyone could have hoped for.  Through my ministry, I developed some of the most meaningful relationships I have ever had and still cherish them.  Busyness while doing full time ministry here did not allow for much contact, but the feelings remain.  Mary Ann and I did spend some time together with other couples in the OKC congregation whose friendship we valued very much.  We remember them fondly even though circumstances have not allowed interactions since then. 

It continues to seem that since retiring, past relationships, those that have a long history are coming into focus to a greater extent than while I was busy with the day to day challenges of ministry.   I suppose it is mostly the obvious, that there is more time to think about the past.  I am sure it is also a way of filling the validation gap created by having days empty of the multiple tasks with potential for external affirmation, measureable successes and failures.  It is a time to process the impact of relationships, as well as look through the layers of meaning to be found in past experiences. 

It is clear that Mary Ann’s assessment of the journey and my assessment are much different.  Mary Ann has the Parkinson’s, I see it and live in close proximity to it.  She more than I, but we are both impacted by the consequences of the Disease.  However our experiences of it differ, we are living through it together, one day at a time.   

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Mary Ann is in bed.  Tonight’s was a much later bedtime than usual.  We had a very enjoyable evening with new friends, Jim and Sally.  Since Jim and I are in the same profession, even though they are much younger than we are, we have lots in common.  One especially meaningful dimension to the evening was that Sally brought out Mary Ann by engaging her very directly in conversation.  Mary Ann was more thoughtful and responsive than I have observed in a very long time.  In the course of responding, she said that she expected to die soon.  She revealed her faith to be secure. She spoke in a way that suggested that she was not fearful and distressed, but accepting of her circumstances.  (I am inferring much of that from the limited responses and their tone.)  The evening was meaningful as well as enjoyable.  There was ice cream, guaranteeing a good evening.

The night of the day we visited the Neurologist (see last post) turned out to be a difficult one.  We had increased slightly the medication that seeks to diminish the hallucinations, but it certainly had no effect on then yet that night.  The hallucinations were as strong as ever.

Even though that next day we had a number of Volunteers, it was a tough day, as it always is after a sleepless night  Both of us get pretty grumpy.  Mary Ann got up very early again, even though she had not settled down until after 2am.  Since there was a Volunteer for that time, I was still able to get to the Spiritual Formation Group that meets at our house.

Later in the day, a friend and I had coffee and spent a couple of hours talking.  He had been a confidant and care partner during the last half of my ministry at the parish from which I retired.  It was probably good that we had as much time as we did away from each other, since we were both so tired.

We both slept very well last night.  As a result the day today was better.  The fainting and the hallucinations continue, but they still allow us a certain quality of life that allows us not to feel deprived or resentful or bitter.

The day is catching up with me.  I had best head for bed and hope for sleep.

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Today was our semi-annual visit to the Neurologist at the KU Medical Center’s Movement Disorder’s Clinic.  Dr. Pahwa is a national level Neurologist specializing in Parkinson’s Disease.  We have struggled mightily with this disease every time we have not been seeing either Dr. Koller before him or Dr. Pahwa.  Geography and insurance interfered with access to KU Med for a number of years during the twenty-two since Mary Ann’s diagnosis.

We are pretty well convinced that we have the best care available.  That is both good news and bad news.  It is good news since we have access to the latest and most effective treatments.  The bad news is that there is not much else we can do to improve Mary Ann’s ability to function.   This is the best we can expect.

Today, we reviewed the medications.  We reported on the changes that have been made.  At Mary Ann’s request, we reduced the dosage of Sinamet, the primary medication that treats the motor symptoms of Parkinson’s.  It is the same medication that has been used for decades.  With all the promising research projects going on, and the various news stories touting a potential cure, not much has changed since the middle of the last century in treating Parkinson’s.

The benefit of reducing the medication is that it has lots of side effects.  Since reducing the dosage Mary Ann has had fewer and less intense hot flashes that are shorter in duration.  There is a little less of the dyskinetic movements (as seen in Michael J. Fox) during the day.  Dr. Pahwa confirmed that change to be appropriate.  That is a medication that often is left to the patient to determine how much is taken.  Those changes are done within the range acceptable to the Neurologist.

I reported the increase in the Midodrine to keep Mary Ann’s blood pressure high enough to reduce the fainting spells (Orhostatic Hypotension) to a more manageable level of intensity and frequency.  The change in that medication was done in consultation with our Cardiologist, who prescribed the Midodrine.

We talked about the increase in hallucinations and their interference with sleeping.  As expected, he suggested a small increase in a medication called Seroquel.  He reminded us that one problem with increasing the Seroquel is that it can make the blood pressure problem worse.  Again, we are riding on a tiny margin between side effects battling one another.  We are in hopes that the contest will end in a draw.

I made the mistake of mentioning something about the online Lewy Body Dementia spouses’ group and information about the Autonomic Nervous System I researched on the Internet.  I can only guess that he is frustrated with Patients and Caregivers who second-guess his recommendations based on the often bad information.  I just made the observation that in looking up what the Parasympathetic side of the Autonomic Nervous system governs, the list included pretty much every area in which Mary Ann has a problem.  He was not rude, nor did he say anything much in response.  He just moved on to closure of the appointment.

I trust his knowledge and experience.  I just recognize that the more we know about the disease, the better we can do at dealing with multiple doctors and the more likely we are to make good decisions by actually understanding the options and their implications. That knowledge has been especially helpful when Mary Ann has gone to the Emergency Room and/or has been hospitalized.  The medical professionals there deal with such a variety of problems that they can’t possibly keep up on the details of all of the various diseases.

The next appointment is six months from now.  We will see if the increase in Seroquel has a positive effect.  Dr. Pahwa is willing to increase the dosage more if this does not work.  He increased the dosage from 100mg to 125mg.  He suggested that we move to 150mg if the smaller increase doesn’t move the hallucinations back to a level that does not interfere with sleep.  That decision is in our hands.

At the moment, we seem to have the best of what is available to deal with the Parkinson’s and the Dementia.  While we would like to have a better quality of life, our job is to make the best of what we have.

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Logic sometimes seems to be completely useless in trying to figure out what to do.  In my last post, I was pleased with myself for keeping Mary Ann moving during the day to assure that she would sleep well.  In that post I reported that the hallucinations had diminished and she seemed to be down for the night.  So much for that observation.

After I finished that post, she started moving around.  The animals were back.  She was restless and we battled the animals for a couple of hours.  The next day was not much better.  There was a Volunteer in the morning who read to her.  I needed that break.  I headed up to the lake, listened to music and checked for wildlife.  As soon as I got back the usual issues that emerge when neither of us have gotten enough rest kept us at odds for much of the day.  Last night included some restlessness, but we both got a decent amount of sleep.

Today has gone reasonably well.  It is the day exactly forty years ago that I was Ordained, the day I became a Pastor.  We got out to a late lunch and splurged a bit, at least as much as can be done at an Applebee’s.  Our town has far too many restaurants, but few that are elegant and expensive (almost none).

There was a Volunteer tonight with Mary Ann.  I used the time to head up to my favorite spot nearby to watch the sunset and the wildlife.  A momma turkey and five young’uns provided some entertainment.  A doe settled down for some cud chewing about 200 feet way.  She seemed to enjoy the organ and choral music on a John Leavitt CD as it drifted out of the open window of the van.  She got up and left when the CD was done.  She has good taste in music.

There has been some nostalgia, maybe a bit of melancholy today.  The contrast between my life now and my life a couple of years ago is pretty dramatic.  During the years of ministry, most of my time (at least 60-70 hours a week) was spent connecting with other people face to face or via email.  Even when I was at home with Mary Ann, most of the time I wasn’t responding to her needs, I was at the computer interacting with people.

Because of the nature of my profession, there was lots of opportunity for being a part of people’s lives with the goal of making some sort of difference for good.  Whether I accomplished that or not is another matter.  That determination lies in the judgment of others.  All of that ceased completely at the end of the day on June 30, 2008.

I am grateful to have lifted from my shoulders the load of responsibility that goes with the role of Senior Pastor of a fairly large and very active congregation with hundreds of people serving as Volunteers as well as a substantial (and very capable) paid Staff.  I felt responsible to at least try to consistently do good work.  It was hard work.  As is always the case, the hard work is what produced the most meaningful accomplishments.  Gratefully, the central commodity we deliver is forgiveness.  It is a good thing, since I certainly needed lots of it for the things I did not get done or did not do well.

Today, it settled in me a little more deeply that that part of my life is over.  I found myself wanting to connect a bit with folks I have served over the years.  While my ministry has not been about me, but the One I follow, I would be lying if I claimed utter selflessness.

Today, I also recalled the most magnificent celebration I could have imagined when the congregation gathered for a retirement party a few weeks over a year ago.  What a party!  There was a sea of almost 500 people spread out in that room.  There was great food, great coffee, great ice cream, spectacular decorations, thoughtful gifts, and kind words that were way beyond anything I deserved (that’s not humility but honesty).  I will never forget that day.  No matter how bittersweet the day was today, I do not feel underappreciated.

Mary Ann is now in bed and on the monitor appears to be settled.  I will not predict how the night will go.  There was no napping today.  Logic would suggest that she would sleep.  Logic is irrelevant.  It will be what it will be. Actually, she has just had a trip to the commode and is now (seeing her on the monitor) moving about as if she is seeing things.

Tomorrow is a routine (three times a year) trip to the University of Kansas Department of Neurology’s Parkinson’s Center (Movement Disorders).  Hopefully Dr. Pahwa will have a suggestion for improving Mary Ann’ ability to rest at night with fewer troublesome hallucinations.

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She is in bed watching the Chiefs play a pre-season football game.  They have not been doing well tonight, but they just scored a touchdown.  After the variety of problems reported in the last two evenings’ posts, today has been a better day for Mary Ann. 

She slept through the night with the usual few trips to the commode.  She got up at 9am.  The hallucinations seem to have subsided some for the moment.  She has been up all day, and went to bed to watch the rest of the game at about 8:30pm.  Of course there is no telling whether she will get to sleep or have a restless night after the game. 

There was a point this morning when she began to shut down some, but I offered to wash her hair.  She appreciates getting that done, so she chose to stay up.  After that we got in the car, ate a good lunch at Boss Hawg’s BBQ, ran errands that lasted long enough that we could justify getting a treat at G’s Frozen Custard.  There was a visit to the Library included.  We rounded out the errands with a trip to the grocery store. 

By that time it was late enough in the afternoon that we could watch the news and have a late supper.  I am, of course, hoping that keeping moving all day will help her sleep well tonight. 

As an update on the fainting problem, the Orthostatic Hypotension (the inability of the body to adjust the blood pressure after standing up), Mary Ann has returned to a more manageable pattern.  There is still some fainting, but not so much as to keep us homebound.  The episodes are fewer and generally milder.   The timing of the improvement seems to suggest that it just took the increase in dosage of Midodrine (blood pressure raising medicine) a few days to work.  Gratefully, the semi-annual Echocardiogram (and carotid artery ultrasound) is coming in about a month.  That will help us see how her heart is holding up to the raised blood pressure.  I have some concern that when I checked her BP the previous two days it was pretty low.  That might suggest that the Midodrine dosage is not adequate.  What encourages me is that the fainting spells have not increased.  I suspect it is too risky to raise the dosage of the Midodrine any more. 

One bit of good news on the periphery of our struggle is that the Black Walnut end table that my Dad made has been fixed and returned.  That is the one that broke one of the times Mary Ann fainted last month and fell on it.  (She was not hurt!)  Some good folks from the congregation, Myron and Orvin, worked on it and made it stronger than before by reinforcing it underneath.  They also  added a beautiful and protective new finish to it. 

The Chief’s lost, but it is only the first pre-season game.  Time will tell.

Today was a better day.  How tonight will go remains to be seen.  Then tomorrow is another day.   We will see what comes!

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.