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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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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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.

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It seems so unfair to complain about frustrations with someone who is suffering from such a terrible cluster of diseases, Parkinson’s Disease, Parkinson’s Disease Dementia, and heart disease on top of all that.  My aches and pains and various annoyances are tiny by comparison to Mary Ann’s challenges.

Someone in the Lewy Body Dementia Spouses online group replied to me this way [I am paraphrasing]:  You may not have the disease, but, as the primary Caregiver, you suffer from it too.

Those of you who know Mary Ann love her and respect her very much.  Those who know her best know that she has a chip on her shoulder that refuses to allow her to let anyone push her around.  It is one of the things that drew me to her and one of the things that drives me crazy!

With this complex and maddening combination of symptoms that come and go and come again, sometimes in minutes, dealing with the ordinary daily activities can be utterly frustrating.

Mary Ann can move from concluding something completely untrue and impossible in her less lucid moments, seeing things that simply are not there, to being completely clear in her thinking, remembering events more accurately than can I. One result of the times of dementia and lucidity being interwoven together, is that I am not sure whether to take seriously what she is saying or not.  I am not sure if she is confused about something, unaware of what she is really saying or doing, or she is willfully exercising pushback, proving again that she can do what she chooses no matter what effect it has on me.

Last night was a restless night.  No amount of begging her to stay settled in bed could keep her from getting up.  Again, there were multiple trips to the commode, even when there appeared to be little or no actual need to use it.  There were changes in the covers, shifts from facing one direction to facing another, need for a snack.  Then this morning she decided to get up at 6:45am to eat and take pills.  Normally, she sleeps until 8:30am or 9:30am.  I was up with her most of the first half of the night.  There is no point in my trying to get to bed and to sleep during her restless times.

After pills and breakfast she wanted to watch television.  Once she is up, I have to be there with her, awake and accessible to her since she gets up and walks, subjecting herself to the likelihood of a fall.  Her schedule determines mine.  She reluctantly agreed to lie back down in bed.  Gratefully, she slept for almost three hours, allowing me to do the same to try to make up for a very sleepless night.

The frustrations continued with our at least daily battle over what to eat.  There were available to her, chicken salad that I had made, fresh sliced smoked turkey and provolone cheese, some lasagna from the freezer, some roast beef and vegetables from the freezer, eggs, bacon, fresh strawberries, blueberries, cantaloupe. seedless white grapes.  I spent at least forty-five minutes trying to get a response on what she would eat.  She came out to the kitchen in her search for something else different from what I had offered.  I asked about the lasagna, which she had liked very much.  She said it wasn’t as good the second time.  That one pushed me to the edge.  I asked again about the smoked turkey.  She said no.  Then, after almost an hour of this, she mentioned salami.  We had gotten that when we got the turkey at the store. It was hard for me to accept that it took that long to find our way to something she was willing to eat.

My assessment of her goal was that we go out to eat.  Since we can’t afford to eat out every day, that goal is frustrating to me.  We had gone out the last three days.  To waste all that food in the refrigerator because it just didn’t measure up to the wants of the moment is an intolerable thought to me.

The rest of the day was spent watching reruns of the most depressing and demoralizing accounts of the criminal behavior presented in vivid detail in a marathon of one of the incarnations of the Law and Order Series.  Since the house is small and I need to be very accessible to Mary Ann, it was hard to avoid at least seeing portions of some of them.

We did manage to get out for a while (a very hot day) to get some ice cream.  Then there was church tonight.  We had some freshly made food brought over to the house by a parishioner and friend later in the afternoon.

In writing this post, I have risked diminishing Mary Ann by speaking so candidly about my frustrations.  She has reason enough to be frustrated with me at least as much as I am with her at times.  She does not have the luxury of writing out those frustrations for others to read.

As unfair as it is, this is one of the ways I process my frustrations so that I can maintain my equilibrium as I serve her needs all day every day — and night.  My hope is that by putting my frustrations into words here, I can be a better husband and Caregiver to her for as many years as we have left together.

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There is no clear and consistent reason that is obvious to either of us that explains the restless nights that come at random — and far too often.  Sometimes there have been a couple of long naps during the day that might explain it.  Not this time.  Sometimes there is caffeine later in the day; there was a little in the mid-afternoon.  Sometimes there has not been enough in her stomach, occasionally due to poor timing of an ice cream treat, stealing her appetite for supper.  Sometimes there is an activity the next day that has caught her attention and refuses to allow her to relax.

Sometimes it is the hallucinations.  That was the presenting reason two nights ago.  When I was using the monitor to watch, her head would lift up quickly and the she would look intently at something.  Her head moved in that way every minute or so, often less than a minute.  Often she would be up on her elbow, many times up and sitting on the side of the bed.  It lasted until some time between 3:30am and 4:00am.

The hallucinations were the usual ones, animals, threads, needles, people.  While I recognize there is a disease producing the problem, nonetheless, I got more frustrated as the night wore on.  There was, of course, no reasoning away the hallucinations.

Not long after we both finally got to sleep (a couple of commode trips during the sleep time), it was time for me to get up, since Wednesday morning is the Spiritual Formation group that meets on the deck at 7:30am.  I get up at 6:30am each Wednesday and move as quickly as I can to get myself showered and dressed, the coffee made (the most important task), set up the deck, get Mary Ann’s pills and yogurt and ice water and granola bar opened.

Normally on Wednesday mornings, I set up all the above items in the bedroom on a table next to her transfer chair so that if she wakes up before the group is done, she can get her pills taken and food in her stomach on her own.  She almost always sleeps until the bath aid comes around 9am.

Not yesterday!  After being awake and active until perhaps 3:45am, she got up shortly after 7am.   As a result, I needed to stay with her rather than go out to join the group.  After about forty-five minutes, she chose to get back into bed for a while.  I was able then to go out and participate in the group for a time.

It is embarrassing to admit how selfish I am, but I was mostly concerned about the pain in my back and the fact that both the night and my morning were being stolen from me.  I should have  been  more concerned about the challenges the day would bring Mary Ann, since she would be tired and the hallucinations would be worse  than usual.

The day went surprisingly well yesterday.  I began this post last evening but was too tired to finish it.  I just shut down.  We both got a decent night’s sleep last night.  For a few hours today, we had the wonderful gift of a young lady who lifted the wheel chair in and out of the car for a grocery store trip and our Parkinson’s Support Group meeting.  Since then a challenging commode trip and return to bed has irritated my back again, but it still seems to be improving some.  She appears a little restless at the moment, but I hope for some rest tonight.  As always, we will just see what tomorrow brings.

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.

Below is a link that may need to be cut and pasted into your browser to open.  If you are caring for a Loved One with dementia of any sort, I suspect you will find it both poignant and painful — at least I did.

http://d.yimg.com/kq/groups/7465654/785021372/name/What%20is%20That.wmv

One of those on the Lewy Body Dementia spouse Caregivers’ online group reported that her Loved One asked their adult daughter,  “I don’t know what’s wrong with me or what is going on, will I ever get better?”  She wondered what she could say to him. 

Another of the members of the group who is caring for his wife and has the gifts of perception and writing replied to that post.  I asked his permission to share his words in this post before I included them here.   This was his reply:

“[My wife] asked the same question several years ago, with the same answer and result…
 
…Their entire world around them is shattering, but somehow, they see themselves as a calm center in a whirlwind… that is why it is so hard for them to realize it is them that is having the problem and not the world around them…Think about it, what would be your reaction if things you saw, people told you  were not there…people tell you that you are doing things that you don’t remember…people and places from the past appear again..even though you “know” that they cannot be???, but there they are…you just want to get away from it all…people tell you what to do, when to do it and want you to be the same as before, but you can hardly see why…..Oh, I just feel so bad for our LO’s..and I am gradually learning even after +6 yrs of this that …oh hell, I’m just as lost as ever..maybe just foolin’ myself that I know anything about anything…”
Of all people, this Caregiver Spouse, knows very much about caring lovingly and gently in the face of whatever comes.  All of us in the group have great respect for his wisdom and insight.
One of the members of the group struggles with what the doctor suggests is more about control than it is a symptom of the disease.  Her Loved One shuts his eyes sometimes when being urged to move along and cooperate.   Is that a passive-aggressive way to exercise some control in the situation, or is it just an involuntary act triggered by some misfiring neurons due to the disease?
I cannot even imagine that there is a Caregiver out there who has not wondered if some action or inaction, some slowing down of movement, some lack of verbal response is the result of the disease process or a product of a strong will refusing to cooperate. 
Mary Ann lives in a world in which, for the most part, I have control of what she does and doesn’t do and when she does it.  The style of our relationship has always been and continues to be one in which I work very hard at determining what she wants.  I think it is fair to say that I also try to find some way to fulfill that want if it is physically possible to do so.  Now, lest I sound wonderfully accommodating, I often either use far too many words along with some attitude to tell her why it isn’t possible, or I do it begrudgingly and then grump about it.  So much for sainthood!
When I watched that short video that is referenced at the beginning of this post, when I read the online post quoted above, I was reminded of just how difficult it is to be in Mary Ann’s position or that of any of our Loved Ones who have to depend on a  Caregiver.  Mary Ann is a strong-willed, independent person.  Actually, they can be pretty annoying character traits to a spouse.  Since I have at least as many annoying traits, we have actually done very well together.  She has always had a bit of a chip on her shoulder, not about to be pushed around by anyone.  Now she has to be pushed around in a wheel chair by me.  
What must it be like for her to have someone watching her every minute, jumping up and running to accompany her to wherever it is she is intending to go, suffering the indignity of having someone else clean her bottom?  What is it like to have someone telling her that she cannot use the knives and hot stove, that she cannot go down to the basement to look for something?  I can imagine that she just wants to scream, back off and give me some space.  “I’ll tell you if I think I need you.”
Then there is the frustration of not being able to follow every question asked of her and formulate an answer based on what she wants or needs.  The book “Life in the Balance” by Dr. Thomas Graboys was an eye-opener for me as he wrote how hard for him it was to try to interact verbally.  His Parkinson’s and the Dementia were impacting his ability to process information, form thoughts, put them into words in his mind and then, finally, actually get the words out loudly enough to be heard and understood.  By the time he accomplished all that, the conversations would have moved on to the next subject.
For those of us who are Caregivers, especially full time Caregivers, it is often very difficult to differentiate between willful resistance to our attempts to get cooperation and the progression of the disease process in our Loved One.  Whichever it is, putting their shoes on for a moment can help us gain some perspective and understanding.  Maybe by doing so we can lower our frustration level just a bit  and find some more patience as we say for the twenty-first time, “It’s a sparrow.”

This morning I had a chance to go up to favorite spot I like to visit when there is a Sunday morning Volunteer.  (By the way, those who worry that we might not be getting to church, we attend the evening service on Sundays.)  I relish the chance for a little time to do some meditative reading, have some quiet time, and soak in the scenery and the wildlife, especially the birds.  I walked along the edge of a marsh below the dam, as I often do when I head up to the lake.  There are some Red-Winged Blackbirds that send out alarms and do fly-overs every time I take that path.  I am not sure what they think I am going to do, but they are determined that whatever it is, I don’t do it.

Something I wrote in my post yesterday came to mind as I spent the time away this morning.  Yesterday, I listed some of the things that I am not doing, options I have given up on for the moment, as we are living the life we have at the moment.  As I thought about that, I began to wonder if in the course of letting go of those options, I am also cutting back too much on what Mary Ann and I try to do to add interest to our lives.

While I have posted often with attitude, attitude that left the impression we will tackle anything, the truth is, I am often reluctant to push the envelop of our apparent limitations.

The disincentives that come with going out of the house to do much of anything seem pretty powerful.  I am afraid that sometimes I give those disincentives more power than they deserve.  It is so much easier to just go with the flow and do as little as possible that challenges us than it is to do the work of getting out.  I have to admit to just plain laziness.

Sometimes Mary Ann doesn’t want to tackle going out and needs for me to be more assertive.  Sometimes Mary Ann seems oblivious to the all the challenges and wants to go and do something, but I am the one that thinks of all the reasons not to do it. Sometimes it is just a matter of being tired because we have had a rough night, as in the night before last.

I don’t want Mary Ann to miss out on activities we are still able to do that may no longer be possible for us to do in the not too distant future.  At the same time, we both have to accept that one of the consequences of the Parkinon’s presence in our lives is that I need to do more of the work for both of us when we go out and participate in activities.  We cannot void those consequences and live the life we might have had if the Parkinson’s had not joined us.

Just as I have to accept what I need to do for Mary Ann to have a decent quality of life, Mary Ann has to accept that I have limited stamina and, frankly, have a lazy streak in me.  Not only do we need to live the life we have, not the one we wish we had, but we have to accept the spouse we have, not the one we would like him/her to be.   Otherwise we will always be disappointed with one another.

I won’t presume to speak for Mary Ann, but I have the spouse I want.  I accept and embrace all that comes with our life together.  In spite of the presence of the Parkinson’s in our lives, I want Mary Ann to have the best quality of life she can have.  I need to be careful not to be too cautious so that we do have the most fulfilling life we can given our circumstances.  At the same time, we need to accept each other’s limitations and imperfections, and not spend our time upset about what we are missing.  Our time is too precious to waste on regrets.

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 a terrible sounding crash.  I had just gone into the kitchen to take my morning vitamins.  She had had breakfast and pills, was dressed, had been to the bathroom, was watching a television program she likes.  Normally, that is a safe time to walk out of the room for a moment.

Not this time!  It sounded horrible.  I ran out to see what happened.  She was not hurt.  That is the most important thing.  The table lamp was glass, gratefully, it had not shattered when it went flying.  Everything on the end table was spread out on the floor, the phone, a thick ceramic coaster was broken in half, a few other items that had been sitting on it were here and there.  The speaker on the stand next to the table had fallen to the floor.  None of it hurt her.

The end table itself was broken into pieces.  She wasn’t hurt.  That is the important thing.  It is just an end table.  Why did it upset me so??  People are more important than things.

It is odd that some things carry more symbolic significance than the thing or the event itself.  My Dad made the end table.  He was not much of a woodworker, but for at time after he retired he made a number of things out of some beautiful Black Walnut boards. There is a history that is embedded in that table.

My Dad grew up on a farm, but worked in an office his entire career.  Throughout my childhood, we went for rides looking for the perfect piece of property in the country to buy.  When I was eleven years old, he found it, twenty-six acres of woods and creek with a few tillable acres on the other side of the creek included.

One day when Mom and Dad were out there puttering, the weather changed.  They headed into a little seven by ten foot structure made of a few boards and some screens for staying out there on occasion.  When the storm ended, there were at least twenty full sized trees that had blown down, Oak, Ash and Black Walnut.  Three of them had fallen on three sides of that seven by ten, flimsy box they were in during the storm.

Those trees were cut into three-quarter inch thick boards and then dried at a local lumber yard.  The Oak and Ash trees became board and bat siding on the house they built to move into when Dad retired.  The Black Walnut boards provided paneling for the basement and end tables and book cases and lamps and candlesticks, a coffee table, and other items that reside in the homes of their children, the five of us, no longer children since now we range in age from 66 to 80 years old.

It is just an end table.  It’s demise is a reminder that nothing in the house is safe.  The fall itself is another reminder that we are out of control here.  I reacted with loud questions, “why didn’t you push the button?”  It sits right by her hand.  I come and help when that electronic doorbell sounds. She has been fainting numerous times a day in the last couple of weeks.  I have asked again and again and again that she push the button, that she let me help her when she is walking.

Seeing Mary Ann lying on the floor, seeing the broken table, a lamp that could have broken and cut her, carried with it the painful reminder of how close we are to not being able to sustain this here at the house.  I couldn’t stop it from happening.  She wasn’t hurt, the damage was not to her, just to material things.  I won’t tie her in the chair, but short of that, there is no way to stop her from putting herself and our fragile life here at risk multiple times a day.

A Volunteer came over shortly after this happened.  She has taken the table to friend who will look at it to determine if the pieces can be put back together in some form or another.  We will see.  Then I lunched with a friend who has finally had to move his wife to a nursing home because he could no longer do the very things we are trying to do here.  The challenges of sustaining that arrangement at the nursing home are also daunting.  It is difficult to find the boundary between being able to manage at home and needing to move to residential care.  It is analogous to the plight of the frog in the water on the stove, heating up until he boils, never realizing the danger until it is too late.

While I am physically able to care for Mary Ann here, I will do so.  The one dynamic that complicates that detemination to care for her here is the ability emotionally to do it.  I released some frustration by talking loudly about my feelings when I saw what happened.  Talking with a friend with similar circumstances helped.  Sitting for an hour in my beautiful spot on the hill, watching deer(among them twin fawns), listening to music, thinking, praying, all helped.  Thinking about and now writing this post helps.

As always, the hardest part of an event like this morning’s fall is handling the fact that I am not the sweet, thoughtful Caregiver who is always nurturing, helping without a word of complaint, the Caregiver I should be.  I shouldn’t give a rip about an end table.  She didn’t want to do it.  Later in the day she said, “I am sorry I broke the end table.”  It just happened.  I can’t blame her, but, just as she can’t keep from popping up to walk when at some level she knows she can’t do so without putting our current life at risk, I can’t keep from reacting in that first moment with frustration knowing that it didn’t have to happen.  I need not to pretend that I don’t have feelings of frustration and bury them in that pretense. Trying to do that really would make me crazy.

On the positive side, once its over, we just get on with whatever needs to be done.  My loud talking provides an immediate safety valve release of frustration.  We return to a loving relationship.  The glass lamp is now at the other end of the couch in a place she very rarely goes near.  There is a floor lamp taking its original place.  For the moment in place of my Dad’s table there is an end table that I made, a simple one that should be easy to repair if broken.  I will begin a search for something to put there that has no corners into which she could fall, something with room for the phone and a few items to reside.

It is just an end table, but at the same time it is a symbol of much more in our system of survival here, physically and emotionally.  The table is broken, we are not.

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The decline continues as there is still no evidence that increased medication is impacting the multiple episodes of fainting.  In the morning, Mary Ann has continued to faint even while just sitting in her chair.   After the long morning nap there is some improvement, but each day there seems to be less and less improvement.  She can’t stand up for more than a minute or two without dropping back into the chair.  Occasionally later in the day she can make it twenty or thirty feet.  

Today I had the wonderful privilege of Ordaining into the ministry a young man I respect very much.  It was a powerful and meaningful experience for all of us.  The Service went well.  It was especially emotional since his Mother had died a few years ago of a form of Alzheimer’s Disease.  She would have been proud beyond words. 

Having been retired for a little over a year now, today has clarified something about the nature of the Pastoral Ministry.  Leading worship services, when done weekly is no small task, but the regularity helps, especially for someone who is terrified of making a foolish mistake in public. 

As today approached, I found myself deeply apprehensive, especially since it was an Ordination service, different from the Sunday norm.  I couldn’t count on auto pilot to get through it.  It felt like what I would imagine a tight wire artist would feel like if after a year of not walking the wire, he was stepping out on a wire stretched over a canyon with no safety net.  I realize I wouldn’t actually be hurt physically if I made some foolish mistake, but rational thinking has little impact when the fear center takes over. 

The stress of fears about where Mary Ann’s disease is taking her so quickly these last days and the stress of deep seated apprehensions about the Service today converged, making for a very difficult weekend.

It is painfully obvious, that stress complicates caregiving whatever the source of the stress.  It took a great deal of effort to maintain a level of patience through this time.  It helped that by now I know myself well enough to recognize the real seat of my frustration.  It is not at Mary Ann, it was simple fear struggling to find a way to express itself.  

As for today, there was a very capable Volunteer from the congregation during the morning hours, allowing me to do some preparations for the service.  Then this afternoon, while I was at church before, during and after the service, doing what had stirred the apprehensions, there was a paid Companion Care person from a local agency, Home Instead.  She had been with Mary Ann most every Sunday morning the last year or two before I retired.  I could leave the house confident that Mary Ann would be in good hands while I was gone.

One significance of doing the Ordination today is that a month from now will be the fortieth anniversary of my Ordination.  Forty years is the normal length of the career of a pastor as a full time paid worker.  I finished my professional career, Karl began his.  All sorts of emotions were stirring as he took over the last portion of the service as an Ordained Pastor. 

One of the most powerful moments was the choir singing a piece called the First Song of Isaiah.  It is a piece strongly associated with Karl’s Mother while she was alive and at her death.  As they sang and I thought of Tina, my fears about where Mary Ann’s Parkinson’s is now taking her folded into the moment. 

We are on a roller coaster that may go up and down many times for years to come before we move into the endgame.  There are moments when the stresses converge.  I am grateful that we have a framework built on deep spiritual footings.  That is what allows us to live each day as fully as possible in the face of whatever comes our way.

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It was a perfect time to be on the deck.  The temperature was in the high 70’s and there was a breeze blowing.  There were some hazy clouds occasionally filtering the bright sunshine.  The deck was partly in the shade and partly in the sun.  The sound of the splashing waterfall echoed providing accompaniment to the raucus squawking of Grackles and Blue Jays.  I read and thought and pondered and read and pondered some more.  It was a wonderful couple of hours.

I got Mary Ann’ s breakfast and pills done; then showered, shaved (yes, even though I wear a beard), and dressed.  The plan was to head to the grocery and then out to eat.  She stood up from the transfer chair for a moment and flopped down into it.  Whatever the switch is that turns off her ability to function, it switched her off.  The plan dissipated and a long nap ensued. 

Adapting quickly to a change in plans has never been easy for me.  If I got into my mind what we were going to do, frustration was my usual response to being derailed, a disabling frustration, leaving me grumpy and annoyed.   Today, video monitor in hand, I just headed out to the deck and had a great time.  In some ways I am learning to cope with the vagaries of the Parkinson’s Disease and Parkinson’s Disease Dementia.

When Mary Ann awakened from her nap, I got her dressed and ready to head out for lunch.  When we started the often endless task of picking a place to eat, she popped up with one we had not been to in years, Red Robin.  It seems to cater to the younger crowd, with a sort of boisterous atmosphere and very expensive burgers. 

I was happy that a decision came so quickly.  I mentioned the possibility of splitting a sandwich since they are large and costly.  I remember the first time we ate there.  It had just opened and there were lots of folks waiting for lunch.  Our name was on the list, but it seemed that others who had come after us were being seated.  I went in and asked why we had been waiting so long.  Somehow our name had been skipped.   As we were being seated, a manager came over and said that because of the long wait, lunch would be on them.  That was music to these frugal ears (big, but frugal).  Giddy with the thought of it, I decided to buy a beer, a Black and Tan (Guinness and Bass in the same glass).  As I was enjoying my beer, a bartender came by with a Black and Tan looking for the person who had ordered it.  He concluded that there had been some confusion, and I might as well have it.  While I just couldn’t manage to get two full beers down in one sitting (college days are over), it felt sort of luxurious to have them both sitting there for me to enjoy.  We had just had two full meals, a Coke for Mary Ann and a couple of imported draft beers for three dollars and change.  Yes, I did leave a tip based on the full price had we paid for the meals. 

This time we weren’t so lucky.  We got seated right away.  I had talked about our splitting a burger before we went in.  Then as we looked at the menu, both interested in the Salmon burger (made with a Salmon filet, not a salmon patty), I asked Mary Ann if we should go ahead and split the sandwich.  She always eats half and we take the other half home.  The burgers at Red Robin are between ten and eleven dollars each.   She said no.  It surprised me, since her normal response would have been yes.   I asked again just to be sure I hadn’t misunderstood.  She again said no. 

We ordered the two meals.  She finds it easiest to eat a sandwich if I cut it in half, and then cut the half in half again.  A quarter of a sandwich is about all she can manage to hold with her hands.  The fingers stiffen and lose dexterity when she is trying to hold on to something.  When she was working on the second quarter, she said, “I thought you were going to eat the other half.”  I am not sure exactly what happened that we miscommunicated so badly.  Red Robins are particularly noisy, and Mary Ann’s voice is very soft due to the Parkinson’s.  Most of the time I end up reading her lips when we are communicating in public, or in the car (can be challenging when driving).  It was annoying to think that we were paying eleven more dollars than we needed to, but I have come to be better at accepting and adapting.

One thing, however, that I cannot seem to accept, to which I struggle to adapt, is the messiness that goes with the dexterity problems.  I find it very hard to deal with my reaction to seeing the sandwich squeezed in her hand until most of it falls on the table her lap or the plate, sauce running through her fingers and down her arm.   Notice that what is hard to accept is not the messiness, but my reaction to it.  The reaction is internal.  My actions were attempts at helping her get the sandwich pieces back in her hand, suggesting she use the fork, then afterward cleaning her hands with napkins and a wipe from her purse.  I know she was uncomfortable with the cleaning I did, since it seemed that she was looking around to see if anyone was watching.

The messiness bothers me more than it does Mary Ann.  Part of it is that I happen to have grown up in a family with a Dad who was meticulous about eating habits.  Part of it is that Mary Ann doesn’t have the view that I have from across the table.  She is focused on getting the food into her mouth.  I see what doesn’t get there. 

Mary Ann did not choose to have limited dexterity.  All she wants to do is eat.  She does what is necessary to get that task accomplished.  My struggle is not with her messiness, it is with my inability to just take it in stride and ignore it.  I am self-conscious for her, when she is not.  I am embarrassed for her, when she is not.  It is hard to admit this, since she is the one living with the Parkinson’s and its impact on her ability to simply enjoy a meal.  I feel very petty.  In this regard, she is healthier than I am.   At least I have the sense not to allow my feelings to stop us from going out.  

Anyway, when we go out to eat, I don’t have to cook and clean up.  With that payoff, bring on the messiness! 

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.