August 2009


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.

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.

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.

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 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.

As reported in the previous post, last night was pretty crazy until Mary Ann settled down around 12:30am.  Since that time, she has been awake only six hours of what has now been twenty-four.  She was awake for an hour early in the morning, an hour and a half late in the morning and three and a half hours in the late afternoon/early evening.  She seems to be sleeping soundly at the moment.   A portion of the time she was awake was spent in a very sleepy mode with her head down. 

My hope was that all the sleeping would give her mind a chance to rebuild those synaptic connections that had not had time to build since there had been some restless nights and a napless day yesterday.  My hope was that the rebuilding process would reduce or eliminate the hallucinations.  That hope was not realized during the few hours she was awake.  There were almost constant threads to be picked up and pulled off her hands.  She insisted that the bedspread that had in her mind been soiled by the raccoon last night be put in the washer.  Bedding needed to be washed anyway due to the very long midday nap without a bathroom break. 

It seems unlikely that she will be able to stay asleep throughout the night with all the daytime napping that happened.  We will see what tonight and tomorrow brings. 

One of the challenges for this and most other Caregivers is the challenge of dealing with being tired much of the time.  I am too proper and frugal to use illegal drugs to stay alert.  Actually, I don’t want to mess with my brain by putting foreign substances into it.   I have chosen to use something legal and familiar to stay alert — caffeine.  The delivery system that I use for getting the drug into my system is coffee.  I don’t do soft drinks.  I don’t use energy drinks spiked with large quantities of caffeine. I drink coffee, hot coffee, nothing added, no flavors, but not just any coffee.  I would not condescend to drink Starbuck’s.  I only drink coffees made with beans roasted to perfection locally. 

One of the owners of the business travels to the farms all over the world, especially Central and South America, and comes to know personally the local farmers and their families.  They are paid above fair trade standards with the agreement that the workers and the local community fund will benefit from the proceeds. 

The Baristas are well-trained, often winning at regional competitions and even participating in nationals.  The national Roasters’ Magazine designated them 2009 Roaster of the Year.  

Needless to say, I have developed an interest in the coffee that I use as the delivery system for my drug of choice, caffeine.  I have learned a little about the various ways of preparing the beans and the resulting characteristics of the coffees made from those beans.  If I sound pretentious on the subject, you have made an accurate assessment.  I know far less than most who are interested in good coffees.  I just like to talk about it, use the jargon and pretend to know stuff. 

As to what any of this has to do with Caregiving, like the raccoons of former posts, it is my entertainment.  The caffeine does help me stay alert when I am tired.  That part is a real benefit when needing to stay at the various tasks associated with filling Mary Ann’s needs and maintaining the household.  Even if drinking a good cup of gourmet coffee is mostly about the placebo effect, fooling me into thinking I am more alert, it still works!  

One of the difficulties of being so picky about the coffee is that when I am stuck at home, I am in trouble.  Yes, I can pull out the decades old Mr. Coffee and make a pot.  It is not the same as getting it from PT’s.  One reason is that they can brew the coffee at a hotter temperature (am I a coffee snob or what) than home coffee pots.  Home pots brew at about 160-165 degrees, while they brew at 190-200 degrees. 

Now for the really good news!  There is a coffee maker manufactured by hand in Holland that meets the professional brewers’ standards.  It is a Technivorm coffee maker.  Needless to say, they are not cheap.  Through a very unusual course of events, I was able to purchase one at a very steep discount. 

This all sounds pretty silly in the face of the real challenges of daily life, especially for full time Caregivers.  It is not at all silly, when completely trapped at home with no access to the stimulating liquid that provides a little pleasure. 

Now, using the new grinder (a Conical Burr Grinder, also steeply discounted) to provide exactly the right texture to the coffee grounds, I can make a pot of coffee brewed at 190 to 200 degrees, using freshly roasted beans, the best available, allowing the flavor to bloom before opening the bin to let the brewed coffee slowly fall into the thermal pitcher. 

Today, we were not able to set foot outside the house.  In spite of that, the day was bearable.  We had bought a half gallon of ice cream yesterday, so Mary Ann could have a big bowl this afternoon during one of the times she was awake.  She had leftover cheese bread from our favorite pizza place, left from yesterday’s short outing.  I had a good cup of coffee to lift my spirits.   The birds were singing and the waterfall was spashing over the rocks.  Trapped, but surviving well. 

http://www.ptscoffee.com/  Check them out.  You won’t be disappointed!

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.

It has just turned into an impossibly frustrating night.  Mary Ann is in hallucination mode.  We were on hands and knees with her face within inches of one of the wheels on a leg of the bed, and she said, there it is, the baby raccoon.  Not long before that, she told me a raccoon had “taken a dump” on the sheet at the foot of the bed, and asked me to clean it up.  It took a long time of looking at that sheet for her to accept that the poop was no longer there, although since then she has not allowed me to pull the sheet up over her.  For the last half hour she has been picking up needles with thread in them from the floor.  I turned on the overhead light with four 60watt bulbs burning brightly and put her glasses on her face so that she could see clearly what was and was not there.  She still kept picking up the needles fearful that someone would get them stuck in a foot.  

I am now at the computer looking at her on the video monitor as she is leaning over the side of the bed busily trying to pick up things from the floor.  I am helpless to do anything about it!  I can only hope that at some point she will get tired enough that she will lie down and go to sleep.   She went to bed at about 9:30pm, it is now 11:30pm.  This could go on for hours. 

Tonight there was a Volunteer here with Mary Ann so that I could be at the computer attending an online Webinar provided by the Progressive Supranuclear Palsy (PSP) online support group.  PSP is in a family of diseases that overlaps with Lewy Body Dementia (LBD).   Parkinson’s Disease Dementia (PDD) is a Dementia with Lewy Bodies. 

While the specifics of PSP are somewhat different from PDD, the Caregiving dynamics are pretty much the same.  The primary presenter tonight was Janet Edmunson, whose husband, Charles, was diagnosed with PSP.  After he died, the autopsy revealed that a more accurate diagnosis was Cortical Basal Ganglionic Degeneration (CBGD) which is another in the family. 

One of the characteristics of PSP that she mentioned certainly rang true for Mary Ann (who is now up and at it again in the bedroom).  She called it impulsivity.  That means the person remaining convinced that he/she can still do things he/she is no longer able to do. 

I just made another trip into the bedroom to see if I could do anything to help her settle.  This time as I was trying to get her back into bed, she told me that she was cold and wanted to go home.  When I asked her where she was, she didn’t know, just that she was cold and this wasn’t home.  I asked her to lie down for a while under the covers so that I could finish writing and come to bed.  As she was starting to lie down, Mary Ann commented that the girl was going to fall on her head, but then the girl didn’t.  When I asked who it was, she said, Lisa (our Daughter).  When I asked where Lisa was, she said she was on the wall.  When I asked her if it was the real Lisa or a picture, Mary Ann said something about “the pick of the litter.”  She did recognize when she said that that it made no sense. 

Back to the Webinar.  Janet Edmunson listed some suggestions for Caregivers. 

  • Determine what you are passionate about and find a way to spend at least a little time regularly, keeping it in your life.
  • Explore life’s adventures, store up memories while you and your Loved One are able. 
  • Give yourself credit, affirming just how strong you have been even when pushed to the limits.  She quoted Eleanor Roosevelt’s comparing people to tea — we don’t know how strong we are until we are in hot water.
  • Give yourself grace (forgive yourself) when you blow it.  If you seem to be “blowing it” extremely often, get help. 
  • Accept that some friends will no longer visit, especially when your Loved One can no longer communicate.  It doesn’t mean they no longer care.  Suggest that they come in pairs so that they can talk with each other as your Loved One simply listens. 
  • The personality changes in your Loved One are not your Loved One, but the disease.  One of the consequences of the disease is that the filter, the value system, gets eroded. 
  • Consider using Hospice sooner rather than later.
  • It is normal to grieve even before your Loved One dies.
  • Look for gifts that only this type of tragedy can afford.

She concluded with this wish for Caregivers: May this make you better, not bitter. 

Well, I think I had better get into the bedroom and see if my going to bed helps any.  Her head has stayed still for the last few minutes.  By the way, when she was first getting into bed tonight, for some reason she asked me to take her blood pressure.  It was 110/70.  Can’t ask for better than that.  Her pulse is usually 60 or less, but this time it was 89.  I suspect the excitement of the hallucinations may have increase her heart rate.

It is now 12:30am.  Here is hoping and praying that she can stay settled for the 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.

Got one!  Now don’t worry, no one was hurt in the process, neither people nor raccoons.  It was little Tommy.  He couldn’t resist the tuna flavored cat food in the live trap.  Sister Sally, along with Mom and Dad, Gus and Belle, have yet to venture in and snap the door shut.  While I am sure he misses the family (who I hope will join him soon), he is clearly old enough to fend for himself.  Those paws and claws looked a little menacing this morning. 

There is a luxurious new home, laden with food, that awaits them as, hopefully, they are all relocated to a more raccoon friendly neighborhood.  I was fine with one.  It was a little too much, however, when Belle started bringing the twins along regularly.  Then when Gus came and stood his ground, taking ownership of our deck, refusing to allow his human host anywhere near the deck, the decision was made that a relocation effort would be undertaken.   I suspect he is at least twenty-five pounds of intimidating bulk.  It is a good friend with experience in relocating raccoons who is providing the equipment, the expertise and the transportation to their new home.  Thanks, Tim!

While we have finally had a bit of success in the relocation project, I am not altogether confident that the whole family will cooperate.   The first attempt netted only an empty cat food can and an unsnapped trap.  The next night drew no interest from the raccoons.  The third try ended up with an empty cat food can, a snapped trap, but no occupant.  It is only the fourth try that has resulted in a relocation. 

I have loved animals all my life; my Dad did before me.  He was a conservationist before it was popular to be one.  No hunters were allowed on the property, although he trapped muskrats along the creek for a while.  When we caught fish, they were to be released again.  He fed the deer.  We watched a raccoon, Goldie by name (golden colored fur), raise her family.  He would pat the chickens on the head when he gathered eggs.  He could call birds with his whistling, owls with his imitation of their calls. 

I love wildlife, but there comes a time when the issue is territorial.  This is my house, my deck, and my bird food!  Sharing a little is one thing.  Eating large quantities of very expensive food and camping out on my deck is another.  One guest is okay once in a while, but moving the whole family in permanently is another matter. 

I have no idea what this subject has to do with Caregiving.  If there is any relevance, it has to do with keeping this Caregiver healthy.  It has been a focus of attention, something different from the routine demands of our situation.  The sight and sound of the waterfall in the back yard, the sounds of singing insects, birds chirping and jockeying for position on the bird feeders, all provide a kind of accessible therapy.  The raccoon relocation project is just another distraction that engages my energy and attention here at the house.   I guess, if the deck provides deck therapy, maybe this project is raccoon therapy (therapy for me, not the raccoons!).

One additional benefit provided by the relocation of the raccoons may be their removal from the bedroom hallucinations.  If they are no longer in the neighborhood, maybe they will no longer be in our bedroom.

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.

It was just an off hand complaint when someone in our online group was venting. To paraphrase: She puts the toilet paper anywhere but in the toilet.

I chimed in that during the night, about one in three makes it into the commode.  Then came reply after reply.  I am not sure how many responded when that thread of emails came to an end. It was certainly a surprise to me that so many had exactly the same situation.  Some used grabbers to pick them up and get them in the right place.  Some found them in all sorts of places, often wastebaskets instead of the commode or toilet.

It was sort of comical to hear everyone pop up with their agreement that their Loved One did the same thing.  After a number of replies, one of the group brought some perspective into the stream of comments.  When we look back on this minor annoyance, it will be of little consequence.  Some in the group said they would love to be back at the stage during which their Loved Ones still had the ability to use the TP at all.

I wonder if Occupational Therapists have classes in how to improve the throwing arm of those who struggle with their aim?  I take for granted that one of my jobs is getting what has landed on the floor where it needs to be.  It is not even an issue (or is it tissue — sorry, couldn’t resist) for me.  It was just interesting to me when I noticed my own feelings after seeing all the replies from so many with exactly the same situation.

I felt comforted, sort of normal, on realizing that the Lewy Body Dementia had that same result in so many other households.  It seemed to remove any inclination to be bothered by something so common to others.  It reinforced that that particular habit is one that is a consequence of the Lewy Body Dementia.  Knowing that seems to help reduce the annoyance quotient of that particular behavior.

After last evening’s post, you can imagine how good it was to hear someone else caring for his wife say, “She doesn’t eat what I fix.”  It just makes a diffeence to hear that so many of us have the very same problems as we try to care for our Loved Ones.

None of us wants our Loved One to be debilitated by this disease.  None of us wants to have so many unpleasant tasks added to our daily activities.  As long as this is our life, somehow it helps to know that we are part of something outside of our control, something that is neither our fault nor is it the fault of our Loved Ones.  It is just a n consequence of the disease we are all dealing with.  It is normal – our version of normal, but normal.

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.

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