The Caregiver Calling

The following post was written on Thursday, January 7, 2009, but not published until Friday, January 8, due to Internet problems:

The best laid plans sometimes go astray. Feeling out of sorts yesterday, I went to bed early in hopes of a good night’s sleep providing an ointment to salve my sore spirit. Demon Lewy Body Dementia (doesn’t the word dementia derive from the word demon) had other plans.

Mary Ann simply could not sleep – for the entire night. I was involved with her needs in some way, two to three times an hour. There were the commode trips. There were two snacks, some drinks of water. There were lots of times sitting on the side of the bed, needing to be situated again when lying back down. She usually can’t handle the covers without help.

There was a long interaction in the middle of the night when she wanted to go out into the Living Room to sit and try to read. The problems with that idea are many. First, when she is up, she still needs help often with the same needs she has during the day. Then, the prospect of sitting up at night for a long period of time, then sleeping during the day risks shifting nights and days, making our system almost impossible for both of us. Those of you who have raised little ones have probably experienced the time when the tiny ones seemed to switch nights and days, making your lives pretty tough for a while.

After wanting to get out of bed multiple times throughout the night, when it got to be seven in the morning, she needed to get up. As usual after a bad night, she took her meds, had breakfast, and in an hour or so ended up back in bed sleeping soundly. I am of course wide awake and writing this. It is my understanding that trying to compensate for lack of sleep at night by napping during the day does not actually help, in fact just makes the sleep deprivation problem worse. It is harder to get to sleep then at night. That and my general inability to nap during the day results in my staying up rather than napping while she is napping. The general wisdom is to go to bed at the same time and get up at the same time each day. The general wisdom does not take into account multiple times up during the night in between those two times.

Of course, the lack of sleep is increasing the problem with hallucinations. There were the people in the house again last night. This morning there were a variety of things she saw outside the windows, and in the house things that needed to be picked up, tiny chains in her hands. There was one of those interactions in which she was talking as if it was just an ordinary matter while saying things that made no sense at all. About half way through lunch, she started to get up. I asked what she was going to do. She said she was going to get her Pepsi. The cup of Pepsi was sitting at the top of her plate with the can in back of it, just as it is for every lunch.

On the other hand, she asked if this is the day Stacey would be back to talk about the blinds and painting the interior of the house. She remembered that correctly. Then she suggested that we paint the interior a light blue, just a touch of blue. Because so often the lucid moments come, I try to work hard at tracking when her words are not computing for me. Sometimes a different word will come in place of the one intended. Yesterday when she suggested we adopt the cat she was seeing with her “magic eyes” (her words for the hallucinations when she accepts that they are hallucinations), she said maybe that cat could be “adapted.”  It took a moment for me to catch what she meant.

In spite of the difficult night, at the moment, I am feeling better today than yesterday. Maybe it is that adrenalin is playing a bigger role in sustaining alertness today. I just took a break from writing while Mary Ann is napping to do a bit of shoveling outside so that I can get to the birdseed. I have fed and watered the birds. It is invigorating outside since the wind chill is between twenty and thirty degrees below zero and the new three or four inches of snow is blowing around. The air temperature is predicted to reach a high of five degrees above zero and a low of eight below tonight, follow by a low of twelve below tomorrow night. Needless to say, we will not be going out with Mary Ann in the wheelchair today or tomorrow. The most we could do is head out in the van and have Mary Ann stay in the running van while I run into the store. There are a number of things on the list, but none that we can’t survive without.

The toughest thing today so far is that the telephone land line is out, eliminating out DSL access to the Internet. I certainly do feel disconnected to the outside world. I forgot just how much time I spend connecting with others through email and the Worldwide Web. For being pretty much technologically illiterate, I sure depend on the technology a lot.

Right now, my interaction with the outside world, is enjoying watching the dozens of birds that are enjoying the fare I have provided for them. We did end up going out in this weather. I discovered that we needed to return some videos. We went to the grocery and I ran in to get the items. She decided that she wanted take out Chinese from the grocery in spite of the fact that I had a roast, potatoes, onions and carrots cooking in the crock pot. It frustrates me that Mary Ann so often will not eat what I cook, even when it is something she used to eat and enjoy. I decided it was not worth arguing with her, since my goal is that she have plenty of nourishment. She ate the Chinese and I had the roast and veggies.

The above was written yesterday on a Word Processor since the Internet was not available.  The really bad night was the night before last.  Last night I went to bed even earlier.   Until about 12:30am, Mary Ann was disturbed by vivid hallucinations.  There were the people again.  The little girl was there.  She was confused about the time.  At one point while lying in bed she said our Daughter, Lisa, was on the phone.  She had no phone. 

After she finally went to sleep, she slept the night.  I got up at 7:30am to get ready for the phone line repair person who was due between 8am and 12pm, but came at about 1:30pm.  Mary Ann slept in until after 9am.  After the commode trip, she went right back to bed.  She was barely awake for the commode trip.  She slept until almost noon.  I think it helped some since so far today the hallucinations have not been as many and as vivid. 

The cold continues, so we stayed put today.  It will be even colder tomorrow so I suspect we will do the same. 

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She looked over toward the walker leaning against the rail around the steps to the downstars.  She said she saw a cat.  Then she said maybe we should adopt it. 

At first I responded with the usual, “we don’t need the hassle of taking care of a cat.”  Then a little while later it dawned on me that there was a more appropriate response.  I told her that it would be fine with me if we adopted the cat she saw.  I don’t remember the exact wording, but it was something like “nice try.”  I added that it would be perfect since there would be no food to buy or litter box to clean.

There was another time that she was talking about something that I could not follow.  The hallucinations were not as constant as they were two days ago, but they were more present today than yesterday.  Yesterday especially, it was hard see her struggling so to track.  She wanted to make a list.  I got her a note pad and a pen.  She did write something about birthday cards.  (I have been trying to remember at the right time to phone one of my Brothers, whose birthday was January 3.)  There were a couple of scribbles after that, but when I offered to help in the writing, she got the sort of look that seemed to say, I have important things to write on the list, but I can’t get them into my mind. 

At those moments she is so helpless, and I am helpless to make any real difference.  So much of the time she has no words, then when they do come, she gets lost in what she was trying to say.  Sometimes what she says makes no sense, and she realizes it in mid sentence.  Other times she remembers things accurately and is right on with what she is saying. 

Maybe that is part of the reason.  Maybe it is the weather and the prospect of being homebound again for a few days.  Maybe I am just tired from the lack of an uninterrupted night’s sleep.  Maybe it is just getting tired of the constant demands of the task.  Maybe it is guilt over what I am not doing that I should be doing or the lack of patience with her.  Maybe it is the short days and long nights at this time of the year (Seasonal Affective Disorder).  I have just  felt out of sorts today.  I think Mary Ann has too.  I asked her if she was feeling goopy (technical medical term) or depressed.  I thought her lower lip was revealing that it might be so.  Her words did not confirm it.  She did decide to take a nap, indicating that she was tired.  It is hard to be sure about the lower lip sticking out as a non-verbal sign of sadness since that is one of the facial changes often brought on by Parkinson. 

Whatever is going on today in both of us, she is in bed and I am going to try to get to bed early tonight.  Maybe some extra sleep will help. 

By the way, those who read this blog and happen to be members of the parish from which I retired, let me clarify that my faith remains strong.  I have no doubt of the Lord’s love for me.   My future is certain and my purpose clear.  Even the Lord Himself experienced times he felt overwhelmed and needed to get away.  He got angry.  He cried.  He felt pain.  He expressed feelings of abandonment on the Cross.  It is a comfort to me that I don’t have to be afraid of my feelings however up or down they may be.  In fact my faith frees me not to run away from them.  I can own up to them, lean into them, experience them fully and move through them to the other side.  My relationship with the Lord is not sustained by my feelings one way or the other.  My relationship with the Lord is sustained by the Lord. 

I do not ask of those who read this blog that you share my faith.  I hope that what you read in these posts is helpful to you whatever your spirituality or lack thereof.  I share my faith on occasion because it is for me the key to my survival and the power that fills my life with meaning in the face of circumstances that seem bent on stealing our lives from us. 

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The hallucinations seemed to have backed off a little today.  Mary Ann went to her Bible Study this morning after a break of about a month.  That seemed to help her alertness, both the anticipation and the class itself. 

I was surprised at how many ladies were at the class.  At 68 Mary Ann is among the youngest in the group.  The cold and snow did not deter them.  I made the observation that many who were there had spouses at home with whom they had been trapped for many days.  Apparently, they needed a break. 

I used the time Mary Ann was at Bible Study to head to the Wild Bird House to pick up a couple of things and talk with the owners.  There were a couple of other customers who joined in the conversation, especially about the Eagles I had seen Sunday morning.  One of the customers had been to the same area and seen forty of them.  The time at the Bird store often turns into a bit of a respite.

Mary Ann suggested again today that we eat at the library.  Since this was the second day in a row that she suggested it, I realized that it was more about the lunch than the library.  We had gone to the library yesterday.  She wanted the five cheese Quiche they serve there.  She wolfed it down with just a little help cutting some of it into smaller pieces. 

She napped for an hour or so when we returned home, but got up to join me in talking with a member of the congregation from which I retired who is one of the best interior design folks I know.  Stacey talked with us about window coverings for the sun room addition when that project is done in February.  Mary Ann is not so interested in the project as am I, but she will certainly enjoy it when it is done.  We also talked about a couple of lesser projects that might be thrown into them mix.  I am just grateful to have something concrete and positive to focus on during these days we are pretty well trapped in the house. 

This evening has been okay.  She seems pretty restless again.  I am especially tired this evening, so I will bring this to a close and try to get some rest.

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I am not completely sure why.  Some things are harder to accept than others.  There is one visual cue that removes all my ability to keep things in perspective.  It takes me right up to the edge of my ability to cope, and then pushes me over.

There she was, half way across the bathroom, walking with her pants around her ankles.  I had stepped out for only moments to give her some privacy.  On the way out, I asked her to please remember to push the button when she was done and reminded her not to get up until I arrived to help her get up.  She did neither.

That visual cue seems to release my deepest fears that the next fall will be the last one.  It surfaces every feeling of frustration that comes when her choices seem to fight against the very help I am trying to provide.  That visual cue pushes me over the outer edge the confidence that I can care for her here at the house until the end.

I got her dressed, put her on the bed, and had to leave the room for five or ten minutes to gather my composure and try to regain perspective. I wonder if part of my reaction is a safety valve blowing off steam to keep the boiler from exploding.  I wonder if it isn’t a grieving process going on that I ignore until something like that visual cue shatters my illusion of control.  I wonder if part of it is my refusal to admit to myself just how hard this is.

Yesterday morning when I went outside to clear the drive and sidewalk of snow for the Volunteer, she tried to get up from her chair, fell and took with her the table in front of her, knocked the computer monitor to the floor along with a cup with some juice in it and a number of other things on the two tables around her.  She was lying in a heap among all of it. Gratefully, as always, she was not hurt at all.  I was upset that I couldn’t so much as go outside to shovel the sidewalk without her getting up, creating the vulnerability for a fall.  Then I felt responsible.  While she couldn’t remember why she got up, I had not gotten her a new box of Kleenex, I had not gotten her fresh water, I had not taken the audio receiver with me outside so that I could hear the electronic doorbell, which she would not have pushed anyway.  I realized again how hard it is to anticipate every impulse need and provide for it so that there will be no need to get up.  It is hard to anticipate and cover every impulse need of another person — one who cannot tell you those needs in words.

She has been having a difficult time keeping things clear the last couple of days.  There are flashes of lucidity, but most of the time, it the hallucinations have continued, verbal communication has been virtually gone, and there have been times of great confusion.  At supper tonight, after working on the baked potato on her plate for a long time, mostly with her fingers, I asked if she saw the meat.  She said no.  A large piece of meatloaf was there on the plate right next to the potato she had been working on. She has often been in eyes closed mode.  She will be acting in every other respect as if she is doing things normally, except that her eyes are slammed shut tightly.  Often when that happens and I ask her to open her eyes, she will answer that she can’t.  I have learned how to walk her from one place to another when her eyes won’t open.

I just came back from the bedroom.  Mary Ann had gotten up on the side of the bed.  She was trying to pick up needles that were not there.  As we were sitting there, a couple of times she told someone to stop pulling on the quilt hanging on the wall a few feet away.  She asked we how soon we would be getting out of here.  Then she asked how we were going to get all the furniture back.  I asked if she was thinking that we were in a different place from our home and that the furniture had been moved here.  She said yes. Like Capgras Syndrome, this is a Delusional misidentification syndrome.

I just went back again.  This time she asked me to take the girls out of the bedroom.  When I asked if they were our Granddaughters, she said no.

At the same time, earlier today when I mentioned the library, she suggested that we eat lunch there.  Since we couldn’t find a parking place, we at at Bobo’s Drive-in.  At the library, she managed to pick out two books from the large print section. We had sundaes at G’s after the library.  When we got home she ended up wanting a nap.  After an hour and a half, after taking medicine and using the bathroom, I took her out to watch television.  She got up and headed back to the bedroom to nap some more.I had to wake her up for supper.

Back again. She is just having a terrible time accepting that it is night and time to be in bed.  She wanted to get dressed this time.  It is about 12:15am at the moment.

I have just been with her a few more times.  The last time included a snack and a paper towel to wipe up something that was not there.  It is about 1am now.  I am wondering how much of the night will be spent with the delusions and hallucinations.  Last night we were up quite a number of times.  There has been very little sleeping in happening in the last week or so.  The interrupted sleep is not helping the coping skills, nor is it helping the delusions and hallucinations.

I am going to edit this now and get to bed in hopes that my presence will help.  There is no good reason to hope it will help, but I am too tired to stay up any longer.  I guess interrupted sleep is better than no sleep.

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.

I could hardly believe my eyes, but there they were.  Trees filled with American Bald Eagles and some Ospreys.  I counted.  There were between eighteen and twenty of them spread out in four different trees.  It was breath-taking.

They were gathered for a lunch of fish and fowl.  They were gathered not far from the spillway of a very large lake.  When the water comes through the spillway into the river, it brings with it fish.  The Eagles were fishing.  There were as many as four of them in the air at a time, dipping down to try to grab a fish.

There were also around 150 ducks of mixed variety gathered on the water in that same area.  The ducks were aware that they could make the banquet table just as easily as the fish.  It was actually comical to watch — probably not funny to the ducks.  When an Eagle got too close to one of the duck, the duck would do just that, duck.  It would pop underwater for a moment.

I was captivated with the scene for as much as an hour and a half while a Volunteer was at the house with Mary Ann.  This was not actually a day to be out and about.  We got a few inches of dry snow on top of the nine inches we got during the Christmas Eve blizzard.  It has been cold enough that all the snow is still here.  The streets melted some, but dry snow on top of refrozen melting ice made for some treacherous driving.

As I drove out to the lake and back, there were eight to ten cars in the median or off to the side in the ditch.  Many of the cars still had people in them.  When I left, I had intended on going to a couple of my favorite spots by the lake to check for birds.  I was dressed to be able to get out and walk if I chose to do so.  As I traveled there, it became clear that there would be a risk in getting off the main road on to areas that had not yet been cleared.  While a four-wheel drive vehicle would have made it more possible to get to those spots, there was something else that dominated my thinking.

Were I to slide off into a spot I could not get out of, there would be a long wait for help.  There were no other cars in on the roads around the lake.  I was making new tracks in some of the roads I was already traveling.  If I were tied up for any length of time waiting for help, it would complicate the day for Mary Ann and the Volunteer.  Any risks I take are not just about me.  They are about Mary Ann.  She cannot be by herself.  If I am not available to be with her, it would be no small task to keep her secure.  Gratefully, Mary (who schedules the Volunteers) would make phone calls until she found Volunteers to stay with Mary Ann.   Bad roads also impact Volunteers.  They are not necessarily able to get out with ease themselves.

As a result of those concerns, I was extremely cautious.  I found a spot on the road across the dam.  There is a great view from the top of the dam.  The spot was right above the spillway.  Snow was falling lightly, the sun was just a light spot in the clouds.  With the snow covering the ground it was very bright.  The panorama of frozen snow-covered lake on one side and the expansive view of the landscape through the lightly falling snow the other side was as beautiful as it was peaceful.

I listened to music as the car ran to keep me comfortable, and I watched the scene below.  The last of the music was some Russian Orthodox liturgical music.  It was as if I was in a bright white cathedral filled with the presence of God.  After so many days contained by the four walls of a small townhome, it was a wonderfully refreshing respite.

Mary Ann seemed to do pretty well today.  We watched the Kansas City Chiefs win, a rare treat.  Mary Ann went to bed fairly early, but she has been watching television while lying in bed for about two and a half hours now.  There is no sign of her going to sleep yet.

We chose to stay in tonight.  The weather is predicted to continue to be far colder than usual here.  The combination of the snow cover and temperatures heading to below zero later in the week are testing our mettle.  Our Northern Illinois roots help us from being completely intimidated, but what the wheel chair adds to the complexity of getting in and out of a car and in and out of parking lots and in and out of sometimes heavy and/or awkward doors with threshholds that can provide barriers others would never notice, all makes us think twice about going out in cold and snowy weather.

At least it looks pretty outside!

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.

Last night Mary Ann contiued her confusion.  While lying in bed, she asked about the group of people somewhere behind me or in her view in the living room — was it the Thursday group.  She asked if it was time to get up a couple of times, once at 9:20pm and again at 10:30pm.  She said something explaining what she was thinking, something that just did not compute, something about her relationship in location to others.   Once she got to sleep, she slept pretty soundly.

This morning, when she got up and was eating breakfast, I was looking through the Christmas card list.  I mentioned one couple at one point and she reminded me where they lived and that their daughter had twins.  These are folks with whom we have not interacted in decades, whom we remember mostly just at Christmas Card time.  I did not remember about the twins since it happened a year or so ago (I think).  Mary Ann asked about a former parishioner, whether or not she had died.  About a month ago she had gone into a Hospice House here, but had since stabilized and gone back to her Assisted Living apartment.  That Mary Ann remembered her situation was a surprise.  Mary Ann’s Bible Study about three weeks ago may have talked about it.   She said she wanted to go out to lunch today.   When I asked where we should go, she immediately said, “the Irish place.”   What a contrast to yesterday!  The place is called O’Dooley’s.  She always orders bangers and mash there.  Since she has never been an adventurous eater, it surprised me the first time she ordered it.  It actually is pretty straight forward, mild sausages and cheesy mashed potatoes. 

After an hour or so of alertness, she fell (while I was taking a shower), but as usual was not hurt at all.  After I finished showering, I got her back in the transfer chair — she fainted.  It was apparent that there had been some intestinal activity during or after the fall.  She became tired and asked to lie down.  There was some more intestinal activity and some major fainting on the stool.  She is now napping.  This was a particularly speedy trip down, up and down again on this roller coaster ride.

After her nap, we did go out to O’Dooley’s.  She had the Bangers and Mash.  I enjoyed the Portobella Mushroom sandwich with home made potato chips with a very tasty cheese dip and a Black and Tan (Guinness Stout and Bass Ale).   And I wonder why I am 25 pounds overweight.  When exactly is it that those New Year’s Resolutions go into effect?

What was sort of entertaining about the time at the restaurant was that when I asked the waitress if we had met, since she looked so familiar, she reminded me that during the five years she worked at G’s Frozen Yogurt she had often waited on us.  She remembered our usual order of two Turtle Sundaes, one in a larger cup so that Mary Ann could handle it better.  More reason for the extra twenty-five pounds.  It is still not fair that Mary Ann eats those good things and refuses to gain a pound.  That she brought half of her meal home and they didn’t even have to wash my plate since I licked it clean, might have something to do with that apparent lack of fairness. 

In addition to knowing the waitress, a young man from the kitchen caught me.  I recognized him as a former member of the parish I served before retiring.  He came over to the table, and we talked for quite a while, mostly about his future plans.  Both of the two were within a few years of high school.  It always pleases me when young people take the time to talk to us Geezers.  He also made a point of acknowledging Mary Ann by name as he left to get back to the kitchen.  That was a very thoughtful gesture, since so often someone in a wheelchair gets ignored.  Now that I think about it, I guess I am complicit in that problem, since I did not make a point of introducing him to Mary Ann. 

We rented some movies and watched one this afternoon.  After the Law and Order Marathon yesterday, I was grateful that we had been given a gift card at the local Family Video.  The movie was not very entertaining to us.  We were grateful when it was over.  Mary Ann was tracking well enough to recognize that she wasn’t impressed with the movie (“He’s Just Not That Into You”).  A customer in the video store had recommended it. 

Mary Ann went to bed very early again tonight.  I was in the living room when I heard the telltale thump of her falling to the floor.  She did not hurt herself, but she was pretty confused and seemed unable to come out with any words that made sense.  She was willing to lie back down and has been sleeping since.  That was about an hour ago.  By the way, she has had a stroke in the past.  This fall seemed like a pretty ordinary one.  The confusion afterward did not include the kind of speech pattern that is a telltale sign of a stroke.  She had no weakness on one side of her body.  Of course there are no guarantees since the range of some of her reactions often overlaps stroke symptoms.  We live in a narrow range of functionality.  There is a vulnerabilty we have just learned to live with.  Most folks who have lived very long are not unfamiliar with that vulnerability.

One especially pleasant phone call was one from Mary, who schedules Mary Ann’s Volunteers.  There are already ten slots filled for January, beginning tomorrow morning.  Those slots vary from two to three hours in length.  The weather may interfere with those visits, but it is a help to both Mary Ann and me that they are scheduled.  We have not had much time away from one another in the past week or so due to the blizzard and its aftermath. 

The ride the last couple of days has taken us up and down with rapid changes between the up and the down.  We continue to hang on for dear life during the down times and celebrate the up times. 

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.

Tired or not, it is a beautiful, frigid, but bright and sunny morning — a good way to start a new year.  I would like it to be on account of raucous partying, but this tired morning comes after attending to needs that continued until that midnight kiss last night. I finished editing last night’s post and got to bed at about 1pm.  Then every hour, on the hour, we were up with the usual, including two snacks, one at 3pm and one at 4pm. I should have known that a large bowl of ice cream would not suffice for supper.  That is all she was willing to eat — other than the four crackers and the handful of chex mix with a little Asti Spumanti at 8pm. The 2am and 5am activities were commode related.

Actually the 6am commode trip was at 6:20am, breaking the once an hour on the hour cycle.  At 7am, Mary Ann was up for breakfast and pills.  After an hour of watching television, she is now back in bed.  I, however, am wide awake and sitting here beginning this post!  I will continue later in the day.

It is about 3pm.  Mary Ann had a two and a half hour nap, then got up and ate lunch.  She has been watching television while I worked on a Christmas card list for this year or next.  Remember, it is the twelve days of Christmas.  I still have five days to go! 

Mary Ann changed the channel fifteen minutes before the end of the program.  I watched the end of it in the kitchen.  Just as it ended she got up and walked toward the kitchen, I presume to see what I was doing.  I came out to meet her and took hold of her to support her, then asked where she wanted to go.  We walked around the dining room table, and when we got to the other side, she asked where Pete was.  I reminded her that I am Pete, and she recognized me at the same time. 

Today she has been pretty disconnected with lots of little hallucinations.  At her request I gave her a dish of ice cream after lunch, and at one point she asked if the other one was mine.  She was seeing two dishes of ice cream in front of her.  Not realizing that the person helping her walk was me may have been a Capgras Delusion.  That is the delusion that a loved one has been replaced by an imposter.  It happened so quickly that it may not qualify as Capgras Syndrome.  A number of those in the online Caregiver Spouses of those with Lewy Body Dementia have to deal with Loved Ones who are experiencing Capgras Delusions.  The bad news about this disease is that it is a roller coaster ride with some scary dips.  The good news is that sometimes there great vistas on the peaks in the ride.  The goal is just to hang on for dear life!

It is evening now.  There was a visit by a good friend of Mary Ann’s.  She brought a bag of Christmas goodies.  Mary Ann did not really participate in the discussion.  I probably should have left the room for a while to see if they could converse one on one.  Today has been such a disconnected day for Mary Ann, I did not think she would be able to respond.  In retrospect, I should have given them a little time to at least allow the possibility that Mary Ann might respond. 

She went to bed at about 7pm.  I will give her the bed time cluster of pills in a few minutes, about 8:30pm.  That is the usual time she takes them even if she has lain down for the night before then.  A couple of the night time pills have sleepiness as a side effect. 

As I have continued the online Ignatian retreat, the focus now is remembering events in my adult life and their impact, any gifts they may have given, gifts that have helped shape who I am becoming. 

One event of monumental significance was the day the diagnosis of Parkinson’s was received.  I had moved to Oklahoma City ahead of Mary Ann and the kids so that each could finish at their respective schools, one graduating from high school and the othercompleting the Eighth Grade in an eight grade school.  I left in February to begin serving a congregation there and the family came at the beginning of June. 

While everything was as welcoming as it could be in the new parish, it was just about the toughest time in my life.  It was equally tough for Mary Ann and the kids.  Just the separation was almost more than I could bear.  I had not realized fully just how important Mary Ann and the kids were to me until that moment I watched the plane take off from the Oklahoma City airport after a visit.  I could not even tolerate the thought of life without the three of them. 

During those five months, Lisa had the added pain of dealing with the murder of the Principal of the tiny Lutheran High School she was attending.  His Daughter was Lisa’s best friend.  He had been a great support for Lisa during her years at the Lutheran High. 

Micah had developed close relationships with his classmates at the large Catholic Parochial school he attended from the Fifth Grade year through Eighth Grade Graduation.  He was chosen by his classmates to speak at Graduation.  The prospect of leaving those friends behind was tough on him. 

It was that March that the phone call came.  Mary Ann phoned me in OKC with the news that she had just been diagnosed with Parkinson’s Disease.  She had to deal with that life-shattering news by herself without my support.  I had to deal with it while among wonderful people with whom I had not yet developed any history.  Mary Ann was not willing to share the news with anyone else, her or my parents, her or my siblings, her lifelong friends, the people in the parish with whom we had just spent fifteen years building relationship.  For the next five years, that secret was to be kept from all but two or three people other than the kids.   We honored Mary Ann’s request, but it took a toll on all of us, especially when the symptoms became noticeable.

It is hard to put into words the impact that the Parkinson’s has had on our lives.  There is no way to even begin to imagine what our lives would have been like without it.  It is actually a waste of time to try to do so.  Time is too precious.  It is needed to live the life we have as effectively and meaningfully as possible.  We can process the impact of the Parkinson’s and assess its role in who each of us has become.  We have grown and learned more than could possibly be written in one blog entry. 

There is a level of maturity and wisdom that our children have come to have through dealing with their Mom’s Parkinson’s.  Earlier posts include sections they have written, reflecting on their experience in dealing with the Parkinson’s.  I am a far better and more effective pastor because of it.  Mary Ann has wonderful relationships with dozens of people directly due to the Parkinson’s.

While I am grateful for all we have learned from Mary Ann’s Parkinson’s, we would gladly have read a book on it if we could have learned those things without the Parkinson’s.   

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It is 9:00pm on December 31, 2009, and I am sitting here at the computer with the last of the Asti Spumanti sitting next to me.  We partied wildly eating crackers and chex mix until we could eat no more – four crackers and one handful after another (that is two handfuls) of chex mix.  We drank that half-bottle of Martini-Rossi Asti Spumanti until there was no more to drink (other than the glass sitting next to me now).  If I slur my words while keying in this post, you will know why.  Mary Ann has crashed – well, she is lying in bed watching the Mentalist.  I think she likes the blond guy.

We toasted the new year shortly after 8pm. That means we celebrated the New Year with South Georgia & The South Sandwich Islands.  I suspect that South Georgia is not the one with Savannah in it.  In a moment of madness (probably not the Asti Spumonti, the glass is still sitting there), I emailed South Georgia and The South Sandwich Islands to wish them well in 2010.  By the way, the contact page on their web site said they would not send souvenirs nor can people fly there.  Visiting can only be done by cruise ship.

This was not Mary Ann’s best day in terms of alertness.  She seemed to have difficulty connecting with any attempts at communicating verbally.  It took a very long time to determine what would be acceptable for lunch.  We got Glory Days’ pizza slices for her. She napped for a couple of hours late this afternoon and woke thinking it was morning.  Later in the evening she seemed to begin to become a little more alert.  She is having trouble going to sleep and commented that she slept too much today.

This afternoon, just as she lay down for the nap, I got a phone call asking if I might stop by the hospital to visit a young couple whose baby came about five weeks early.  The couple are some of my favorite people.  They have been ministered to very effectively by the Deacons at the congregation. The couple have been on the roller coaster ride that comes with all the unknowns in such a situation.  Everything seems to be on course for a healthy little one to be heading home in a couple of weeks or so, but it is always a scary ride, especially the first few days.  I was affirmed that my visit was requested.  I made sure all was in order with the parish, since retired pastors need to handle any ministry to former members very carefully so that all is done appropriately.

It felt good to be in that role again, if only for a short time. The nature of my role here with Mary Ann does not readily accommodate such ministry activities.  That has been good for the new Pastor (currently out of town), giving him a chance to do what he was called to do.  I was able to leave the house and head to the hospital for a time, since the baby’s Grandmother is one of Mary Ann’s Volunteers.  She was, of course, willing to stay at the house with Mary Ann (who slept during the time I was gone).

While writing this post, a greeting came through Facebook from one of the Youth in my first congregation, the one I began serving in 1972.  Sara is no longer a Youth, but I will not venture a guess at her age.  She is taller than I am and could hurt me.  Actually, one of the other Youth from those years just turned 50!  How is that for scary!

In my remembering the Teen and Young Adult years in the online Ignatian retreat I am doing, I made reference in last night’s post to the volatile years at the high school at which I taught.  Those three years came just before the move to the parish in Prairie Village, Kansas (the Kansas City area).

I had come to the high school from the Seminary, having become completely disillusioned with the institutional church.  I had concluded that it was not reasonable to expect the institutional church made up of flawed human beings to be any better place than any other human institution.  It turned out to be a very healthy discovery.  Ultimately, I came to appreciate the one major difference between the institutional church and most other institutions, the freedom to speak openly without censure the heart of the message revealed in Scripture in all its powerful transformational truth.

In that last very long sentence (I had four years of Latin in high school – blame Cicero) I used the word “Ultimately.”  There was much that filled the space between the beginning of the disillusionment of the institutional church and that “ultimately” healthy understanding of it. The students at Concordia Lutheran High School touched my life powerfully in those three years.  There came a transformation of my faith from one filled with pain and struggle to one filled with hope and joy.

The Cliff Notes version is this:  I came to teach with no preparation in how to teach.  I had a lot of information in my head, but no training in how to communicate that information to high school students in a classroom.  The courses I taught had only titles, no textbooks, no curriculum.  The titles were Old Testament (Freshman Religion), New Testament (Sophomore Religion), and Doctrine and Life (Senior Religion).  The students had been in required religion classes since Kindergarten.  You understand my dilemma.  The moment I quoted a Bible passage or used the religious code words they had heard for ten or twelve years by then, their eyes glazed over.

I chose to avoid the jargon and teach the message behind the jargon.  The relationship and the trust that grew between the kids and me was something I could not have anticipated.  When the inevitable time came that the Principal called me into the office to tell me that my contract would not be renewed for the next year (the Friday after the Tuesday we had put Earnest money down on a house, with Mary Ann four months pregnant with our second child), the response of the students was more meaningful to me than there are words to say.  Without doing anything improper (no sit-ins) they came to my defense.

In the end, I was offered a contract for the next year.  By that time I had received a Call to serve the parish in Prairie Village.  I realized that at CLHS I would be a lightning rod and a scapegoat for the administration.  I also accepted the fact that my abilities fit the parish better than the classroom.  Those young people touched me deeply with the intensity of their faith, their understanding of Christian community, their courage, and their willingness to put themselves on the line for me.  I will never forget them.

The years working with Youth in the Kansas City area nurtured what had begun at the high school in Ft. Wayne.  The immediacy of the presence of God in the lives of young people is a marvel to behold.  During those years, I got to be an accessible Adult who said all the same things their parents were saying to them with the advantage of my not being their parent.  I gained far more than I gave those young people.

What emerged as my purpose in relating to young people who came through so quickly and headed on with their lives, going off to work or college, was to have a positive impact, however small it might be, on their faith, their understanding of themselves and their ability to relate to others.

Over the years, that understanding of my purpose has expanded.  None of us can control, shape, manipulate anyone else into becoming who we have decided he/she should be.  Whether it is Mary Ann, our Children, our Grandchildren, the people we serve in whatever job we have, for me the ministry to so many I came to care about, our role is have as positive an impact as possible on them as they come through our lives and we theirs. The times I have heard from people whose lives intersected mine in the past often lift my spirit.

I just went in and gave Mary Ann a New Year’s kiss as the fireworks are announcing that the New Year has just begun here also, after beginning four hours ago in South Georgia and The South Sandwich Islands.  I think it is time to bring this post to an end.

Happy New Year!  May you keep your hopes and dreams alive in 2010!

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.