July 2009

It was disturbing to look directly at her face during a severe episode of fainting.  Her eyes were open but completely blank and empty of any indication of her presence.  She was fighting for air, breathing through her nose, making the ugly sounds that usually come when she goes out completely for a time.  I don’t suppose it was any worse than the worst we have experienced almost daily lately, but this is the first time her head was back so that I could see her face.  Mine was only inches away since I have to use my body to keep her from falling forward.  I guess every other time, her head has been down, so that I only could only see the top of her head or her forehead.  I always thought her eyes were closed during these episodes. 

I guess it was just an encounter with the full reality of what goes on when someone faints.  It is hard to watch her fighting so hard for air.  I am grateful that she never remembers the episodes. 

With that said, actually, today started out better than any in the last couple of weeks.  She had no fainting spells from the time she got up and had pills and breakfast, through getting dressed, and some intestinal activity that has almost always included or ended with fainting.  She did decide to lay down for the usual morning nap, but it was not precipitated by fainting as has been so most of the last days. 

The major fainting spell came after the nap.  There were some other episodes during the day, but not as intense as the first.  Somehow during these last two days  it has seemed as if we are on an upturn from where were heading through last Sunday. 

As you can tell from what I described at the beginning of this post, it is not much of an upturn if it is one.  Especially this morning before the severe episode of fainting, I was feeling as if Mary Ann was rallying.  She may still be doing so.  The thought of her rallying brought to mind something I have gone through with others and have experienced myself. 

As much as any of us who is caring for a Loved One with a chronic degenerative disease or a terminal disease wants our Loved One to improve rather than decline, there is an odd sort of emotional stress that comes with the improvement. 

What happens when there is a decline is that there is a sort of grieving that goes on.  There is a jouney through some or all of the stages of grief.  If the decline is severe and long enough, the Caregiver can make it all the way to acceptance. If the Loved One then rallies, it is sometimes hard to “unaccept” the decline. 

I have been coming to accept that we are in a new stage in the disease process maybe one that is leading closer to the inevitable conclusion sooner rather than later.  Since we have lived on this roller coaster for so many years, I do not simply let go and commit to anything about how permanent a particular change is or how far along we are in the progression of the disease.  It is still hard to let go of the feelings that start to grow in the gut and then realign with a new reality when things improve. 

At the moment, I am not sure how far the decline has taken Mary Ann, whether it is turning around, whether we are at a new normal, whether meds can bring her back to a former level and, if so, for how long. 

The truth is, we don’t actually need to know the answers to those questions.  We both just need to deal with whatever comes each day, making plans, fully aware that we may not be able to work the plans we have  made. 

On this roller coaster, it is scary when we are dropping down a steep decline in the ride, and it is a struggle to adjust when the ride turns us around takes us up out of that decline.    Gratefully on the upswing or downswing we feel secure in the spiritual grounding that sustains us.  It frees us to have all the complex emotions and fears, live with them and through them, without despair.  It is just our life.  The specifics may differ, but it is not unlike the lives of most of us.  There are ups and downs and in betweens.  It is just life. 

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There is a vulnerability that Caregivers don’t care to think about.  What happens when they are not well?  The needs remain.

Today was a good news bad news sort of day.  Neither the good nor the bad was very dramatic.  The good news was that while Mary Ann did have fainting episodes today, they seemed less often and less severe than the last few days.  Even after having a fainting episode that normally would result in a long nap, she chose to stay up. She didn’t nap until the afternoon.

I had an errand that would have needed outside help to accomplish on time had she napped in the morning.  She was able to head out in the car with me so that I could do the errand.  We picked up some Long John Silver’s fish and chicken for her while we were out, came back and she ate it at home.

The bad news was the recurrence of the occasional bouts I have with Esophageal Spasms.  They are very painful, come without warning, and last many hours.  They just happen.  There is not really much in the way of treatment for it.  They don’t come very often, a number of times a year, and they are not really dangerous.  As far as I know they don’t do any long term harm.  The just hurt very much.  The pain is in the center upper chest and comes in regular waves with each peristaltic movement.  I think I remember learning that those movements are about eight minutes apart.  I haven’t measured the time between waves of pain.

When the spasms come to spend time with me, it is pretty tough to focus on anything else.  Eating or drinking is not an option.  If I am free to do so, I raise the head of the bed, turn on the television in the bedroom and hope there is something interesting to provide a distraction.  Current circumstances don’t allow that option, at least not for very long.

While there were some painful times today, the spasms were not as painful as they have been in the past.  On a scale of one to ten, they can regularly move to eight or nine and flirt with ten.  Today was close on occasion, but not that intense most of the time.

When those spasms come, the experience reminds me just how vulnerable we are and how fragile our system is.  A Caregiver does not have the option of saying, “I am not feeling well, so don’t need anything for a while.”

Actually, anyone who has served as the primary caretaker of their children knows exactly how this works.  When you have a cold or the flu, after the first wave of the kids wanting to do things for you, there is a return to constant demands from the kids for help, no matter how bad you feel.

I have to say that today went relatively well.  It was more just a reminder of how fragile our system is, how vulnerable we are should my health falter.

At least Mary Ann’s slight improvement today keeps alive the hope that this downturn is not permanent, or at least we may have bottomed out for the moment.  Again, tomorrow is another day.  We will see what it brings.

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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 is becoming more likely each day that this decline is not temporary but permanent.  Increased Midodrine to raise her blood pressure and move us across the margin from fainting regularly back to fainting occasionally has not yet accomplished its task.  We began the change in dosage yesterday noon.   The medication may work better as the days go by but it has a very short half life, so it should have worked by now.  We will see.

What is interesting to me is that when I referred to the change in our circumstances earlier today, Mary Ann seemed puzzled by what I was saying.  I realized that from her perspective little has changed. 

Mary Ann has no awareness that the fainting is approaching before it happens nor does she have any awareness after she comes around that it has happened.  I have asked her more than once if she realized that the last thing she remembered was standing up, and now she is on the floor or in her chair.  She hasn’t always believed that she sometimes fainted — still has her doubts.

It is a good thing that she is not distressed by what happens.  The number of times she faints in a day does not seem to impact her in any way unless she has hurt herself during one of them.  As I have mentioned in the last couple of posts, she does often get very tired, maybe sort of tune out, and then nap, but napping doesn’t seem to register as a consequence of fainting. 

Her perception of the situation seems not to have changed while my perception has changed.  It is, of course, more than just a perceived change.  As the Caregiver, I am the one who holds her up in the chair or on the toilet stool or on the commode when she faints there.  I am the one who lets her down to the floor and/or picks her up when she falls from a standing position to the floor.  I am the one who marks time while she is napping two or three hours, watching her on the monitor so that I will be there when she begins to move.  When she awakens, she is just surprised at how late in the day it is. 

We have views of her reality that are 180 degrees apart.  She is looking from the inside of her circumstances out.  I am looking at her situation from the outside.  She seems far less distressed by very many of the problems she encounters than I am.  She is the one with the physical and mental limitations, but she reacts with equanimity.  I do not have the those same limitations, but I feel more strongly the frustrations of the roller coaster ride we are on.  I see what she can’t see in regard to what we are going through as a household. 

The role of a Caregiver is to create an environment for his/her Loved One that is comfortable and secure so that the Loved One experiences life as fully and completely as circumstances will allow.  By making sure there is food whenever wanted or needed, clean clothing to put on and help putting it on, personal tasks accomplished, a little variety and social contact, the Caregiver provides a sort of cocoon of comfort in an otherwise impossible situation.

While this Caregiver does lots of whining and complaining, for the most part, there is little awareness of just how much goes into creating that cocoon of comfort and security.  The declines are sometimes masked by the Caregiver adapting to the changes in a way that minimizes the impact on the one declining. 

She is pretty much unaware of the decline she is in.  That seems to me to be a good thing.  She is not experiencing pain and distress and fear triggered by the recent changes.  Her world is still in place — almost no changes from her perspective. 

Deck Therapy Addendum:  I was sitting on the deck just before 9pm toninght and out of the corner of my eye, there came mom and young’ns coming on the sidewalk and heading under the deck five feet from where I was sitting.  In fact I got up and watched from the deck just above as the last one squeezed through the lattice.  I scolded them and they came out right under my nose and left the way they came.  I sat again, was in and out of the house a couple of times, then sat out there again.  As I was sitting, there between the posts by the gate off the deck was a little face sticking its nose through looking at me, checking to see if I was still there.  That time I got the hose and squirted under the deck from the other side.  I couldn’t see if and when they left, but they weren’t visible for the next half hour that I sat out there.  They are bold as brass.  I brought into the house (as I did last night) the feeders they rob.  I can’t afford to keep up with the quantity they consume.

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This morning was the worst morning yet in regard to fainting.  I don’t recall that she fainted during the trips to the commode during the night and in the morning.  When she got up, we made it through pills and her usual yogurt, juice, and today she chose a granola bar from the other regular options. 

Then the fainting began in earnest.  She fainted every time she stood up even to transfer from the dining room chair to the transfer chair.  What was most concerning to me was that after moving her in the transfer chair to her usual spot by the little table to watch television, she fainted.  She was sitting in the chair, had not gotten up and down, but was just sitting and went out cold. 

Orthostatic Hypotension is the blood vessels not constricting when a person stands up, allowing gravity to keep most of the blood in the lower part of the body, slowly reducing the blood flow to the brain.  She was just sitting down.  She had not gotten up. 

Of course, after she came out of that syncope, she insisted on standing up, and fainted every time.  I asked her if she wanted to lay down for a nap, but she was determined not to do that today. 

She decided that she wanted to get dressed.  I rolled her into the bedroom.  When she stood up, she fainted again. When she has fainted, sometimes when she comes around, her eyes shut tightly, her lips purse and she sort of twists her head to the side.  That usually means that she has shut down and can only lie down and nap.  This time I asked her again if she wanted to lie down, expecting either a yes or no answer.  She said no.  I asked if she wanted to get dressed.  She said yes.  She was determined.  I managed to get her transferred to the bed to begin the process of taking off her top to get dressed. 

She fainted again just sitting on the bed.  This time I just arranged her on the bed, covered her with the sheet and she stayed out and slept for a time.  She did not sleep quite as long as on other days, maybe an hour or hour and a half. 

When she woke up, she was better.  While she still fainted, she could stand up longer and did so more in accord with the pattern of previous days.  The rest of the day has continued the pattern of the last couple of weeks.  She was able to function.  As has been so recently, I could not really leave the room to speak of, since she continued to be in pop-up mode.  She could walk eight or ten feet, but then needed to sit down. 

The Cardiologist’s office called this morning to respond to my request about increasing the Midodrine, the medicine that raises her blood pressure to minimize the syncopes due to the Orthostatic Hypotension.  The suggestion was to increase each of the three doses in the day by 50%.  Instead of one pill, one pill, and then a half pill four hours apart, it could be increased to one and a half pills, one and a half pills and one pill four hours apart. 

Normally I would titrate the increase over a few days.  After this morning, I decided to make the full change right away.  The noon and suppertime doses have been increased.  Tomorrow morning that dose will be increased.  My hope is that this will move us back over the threshold to a more manageable pattern.  We live very close to the margins of functionality. 

We should know pretty soon if the change will take us back to the version of normal we were experiencing a couple of weeks ago.  We may have to adapt to a new normal.  We prefer the old normal to this new one that seems to be trying to emerge. 

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Today was a little better, but not much.  So far, the decline is having more of a permanent than a temporary feel.  As always, tomorrow things may change.

It’s all about the Autonomic Nervous System (ANS).  I have just been looking at some online information about the ANS, the Parasympathetic Nervous System, a subset of the ANS, and Acetycholine, a basic Neurotransmitter that communicates messages to various parts of the body.

Sounds technical, but for me it has very practical implications.  The messages that are communicated from the ANS impact the movement of the iris/pupil in the eyes, the glands, sweating, the mucosa (nose running and drooling), the smooth muscles of the heart, the vascular system and its capacity to constrict and dilate blood vessels, the alimentary canal from top to bottom, food entering, begin digested and waste leaving, bladder function and urine production.

The list of actions under the control of the Autonomic Nervous System is a list of Mary Ann’s Problems.

We have gone to the Optometrist many times to try to get glasses that will fix her eyes ability to focus and make reading possible.  Her eyes and those of many with Parkinson’s will not cooperate.  Changes in glasses have no impact on the problem.  It is a combination of the ability to concentrate and the eyes inability to function normally.

There is hardly need to say again just how debilitating the daily sweats are when they come.  The fact the the ANS acetylcholine transmitter talks to the sweat glands and other glands in the body is very revealing.

Mary Ann’s nose has been running constantly for a decade.  We buy four ten packs of Kleenexes when we go to Sam’s Club.

The problems Mary Ann has with her heart may or may not have anything to do with the ANS, but certainly her life long problem with high blood pressure and now low blood pressure does.  The ability of the blood vessels to constrict when standing up is governed by the ANS as it connects with the smooth muscles around the blood vessels.  That ability is compromised by the disease and medications.

The workings of the alimentary canal are an obvious problem as Mary Ann has struggled with constipation for most of her life, now worsened by the Parkinson’s and meds as the smooth muscles around that canal slow.

The frequent urination and incontinence are on the list of bodily functions impacted by the Autonomic Nervous System.  Our lives are dominated by the actions of that canal.

I guess it doesn’t really make any difference that I can see the connection between Mary Ann’s many non-motor symptoms and the Autonomic Nervous system, but somehow it seems helpful to put some of the pieces together.  I don’t like it any better, but I understand it better.

One thing that is clearer to me is that there is not a whole lot we can do about the decline that is happening.  The Autonomic Nervous System governs involuntary actions.  We can’t decide to make it work better.  It has a mind of its own.

It is just confirmation of the obvious: we are not in control.  We can watch and react, we can whine and complain, but we can’t fix it.   We are left to live with it.  That is what we are doing.

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This morning Mary Ann began the day feeling very weak and wobbly.  She had fainted more than once during the night at commode times.  She fainted more than once this morning.  She took her pills with juice and yogurt, but was not interested in the usual cereal afterward.  She just wanted to go back to bed.  She slept for a couple of hours. 

For the rest of the day, she has been able to walk only very short distances until she either fainted or couldn’t go any farther needing to sit down.  She did manage to get to the car so that we could, using the wheelchair as usual, head to Perkin’s for pancakes. 

While she was restless and in popping-up mode after that through suppertime, she still could not walk more than a few feet without having to sit down.  That, of course, meant I was also in popping up mode. 

Today has not been unlike many days in the last couple of weeks.  She did seem weaker even than prior days in that period.  The question is the one that is always at least in the wings but now has moved to center stage again.  Is this a temporary decline or a permanent one, a new plateau on the journey down the Parkinson’s Disease and Parkinson’s Disease Dementia path? 

I realize that worrying about whether it is permanent or temporary accomplishes nothing, but it just seems to be time for a little fretting on the matter.  What is especially of concern with this disease is the rate of decline.  We understand there is one direction this is going.  The rate at which it is traveling is at issue. 

The hallucinations are becoming stronger and more relentless, and the fainting is returning with a vengeance.  Moments of confusion seem to be more frequent.  All of those things are around all the time, so the challenge is to measure their intensity and frequency.   That is easier said than done since changes for the better and for the worse are incremental and seldom consistent.  

It is hard to know when the change is enough to warrant calling the Cardiologist or Neurologist.  If we do, what will either of them do that is not already being done?  We know the cost to be paid in destructive side effects if we raise levels of medication to control the problems as they worsen. 

There is no stopping the progression of this disease.  None of the medications currently available have the p0wer to slow the disease process, at least by the time the disease reaches this stage.  We have pretty well exhausted the options for controling the symptoms.  We are now left to the vagaries of the the daily and weekly and monthly ups and downs of the disease itself. 

There may be a change for the better coming, who knows, certainly not I.  We will continue to do as much as seems doable.  We have a major trip scheduled at the end of this month.  My hope is that the current apparent decline does not put that in jeopardy.   Maybe this time, what goes down will come up again on this roller coaster ride. 

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The phone started ringing early (for us) on the Fourth of July.  The first call was from the Funeral Director to obtain the new Pastor’s phone number.  The second call was from the new Pastor on a much needed vacation with his family from whom he has been separated most of the time for the last five months.  He asked me if I would do the funeral.  Since I served the congregation for over twelve years until I retired almost exactly a year ago, I know the family well.  I agreed to do the service.

I have now been reminded how difficult it had come to be just to do the basics of the ministry before I retired.  Even with the Volunteers who have been so willing to stay with Mary Ann, scheduling appointments and meeting times on short notice is beyond complex.  

Just the phone calls are sometimes difficult to handle since Mary Ann’s need for help often comes with little warning, no matter what I am engaged in.  Completing a phone call, especially a long one, is sometimes virtually impossible due to a fall or a bathroom need. 

This family includes one of those who has Volunteered with Mary Ann in the past, so she suggested that the first planning meeting be at our house.   That eliminated the need for trying to get a Volunteer on the Fourth of July weekend with less than 24 hours notice.   The meeting was scheduled for 2pm.  The morning routine started fairly late in the morning.  The morning fainting spells began and a long nap meant that getting Mary Ann dressed came early in the afternoon.  I needed to make a meal.  The ingredients for a Quiche were in the house and ready to go. 

I started during her nap and moved sort of methodically completing each step before going on to the next.  I knew if I had hot pans cooking bacon and preheating oven and sauteeing onions and egg mixture and softening cream cheese all going at once, along with Mary Ann’s multiple requests, all needing to be done before the family arrived, the stress on this inexperienced and unskilled cook would be explosive.  The timing worked out so that the Quiche would not be done before they came.  Mary Ann needed something else to eat since she had not had anything to eat since pill time about an hour before the nap began.  I tried to postpone the meeting but could not get through to them. 

I managed to get my clothes changed for the meeting, the Quiche in the oven and scrambled eggs made from the leftover egg mixture, onions, bacon and cheese for Mary Ann to eat. 

When the family came, we met on the back deck while Mary Ann was eating and the Quiche was cooking.  I left the meeting periodically to check on Mary Ann, adjust the oven temperature, and take the Quiche out of the oven.

Understand, the meeting was with parents who had just lost their adult son.  One of their daughters, his sister, was with us.  Ministering to people in such painful circumstances demands full attention.  People deserve that kind attention when they are in such powerful grief.  The Son who died had lost a daughter at two and a half years of age many years ago.  The pain of losing that Granddaughter was still fresh after all the years.  Mom had lost her mother when she was just a little girl.  Those feelings remain intense. 

It is important to be there for people in times of such grief, in this case in multiple layers, listening intently and responding in ways that validate the pain and help provide a framework with which to handle it.  It is hard to do that while running back and forth to deal with another center of focus equally complex. 

Today reminded me why I made the decision to retire.  Doing a responsible job serving the people of the Congregation and being there for Mary Ann at a time of such need simply had moved beyond the limits of my ability. 

This week will include another very substantial meeting with the family to process feelings and gain information for the message at the funeral.  There is already a Volunteer scheduled at a time that was workable for the family.  There will be a number of hours after Mary Ann is in bed writing that message.  I have just completed the plan for how the service will be done, putting the pieces together so that a service folder can be prepared. 

For the funeral itself, Volunteers are simply not available (at least not so far) since some will be attending the funeral.  Mary Ann may be able to attend, but will need someone to help her during the time I am attending to the service and its preparations.  If she attends the service, that Volunteer is in place.  If she cannot go, I will need to arrange a paid agency person to serve as backup.  That may or may not work out. 

On Sunday afternoon I will be conducting the Ordination Service for a young man who has completed training and internship and will begin serving a congregation in Iowa the following week.  The plans for a companion for Mary Ann and an agency backup are now in place. 

The convergence of work needs and Caregiving needs is something that some who read this blog are experiencing.   To you I say, if you think what you are doing is impossible, you are right.  You are doing it and will continue to do it.  As I look back, I have no idea how I survived.  Those of you who are working full or part time and Caregiving also have no answer to give when someone who knows what you are doing asks, “How do you do it?”

I am being reminded this week why I retired.  I am grateful that I could, and glad that I did.  Mary Ann and I need every hour of every day just to deal with what the Parkinson’s and Parkinson’s Disease Dementia.  We are full time care partners.  It is what we are called to do. 

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 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! 

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Tonight we met a couple who have just received the diagnosis, Parkinson’s.  It was their first time at the Parkinson’s Disease Support Group.  I will speak only in general terms since I did not ask for permission to discuss their situation here.  As I listened to what they have been going through in incorporating the diagnosis into their lives, I couldn’t help but remember twenty-two years ago, when Mary Ann and I were in our early to mid-forties and the diagnosis came.

The couple tonight had been spending much time and energy trying to look forward, trying to determine what to do to prepare for what is to come.  There is so much information available now. I don’t know what the status of the Internet was twenty-two years ago, but, since we didn’t have a computer, its status is irrelevant to what we experienced then.

Information was hard to come by.  What was pretty unnerving was that the first Neurologists we saw didn’t seem to have much information either.  It isn’t that the disease had not been identified long before 1987.  The Neurologists we went to at first were not specialists in Parkinson’s.  Their staffs knew only the basics.  Since every presentation of Parkinson’s is different in each person, the basics seemed more harmful than helpful since they didn’t always fit Mary Ann’s experience of the disease.

During those early years, we did make occasional trips to Kansas City from Oklahoma City either to attend a Parkinson’s Symposium, or visit the Kansas University Medical Center’s Parkinson’s Clinic.  There we discovered a Neurologist and Staff who actually knew about Parkinson’s.  What was so frustrating to us as we went to the Neurologists in OKC was the discovery that we had come to know  more about Parkinson’s than the Neurologists and their staffs there.

Even at that, the knowledge of Parkinson’s in 1987 pales in comparison to what is known about it now, especially the non-motor symptoms.  I have talked about this before in other posts on this blog.  The question that has come to mind tonight is, what would we have done differently, how would our experience these twenty-two years have been different had we known then what we know now?

We talked tonight about the challenges that lie ahead for this couple.  They have worked very hard at anticipating and preparing.  They have searched the Internet and found lots of information, information that was not available when Mary Ann was diagnosed.  They have one of the best Neurologist’s around, one who specializes in Parkinson’s Disease.  Their situation is much more challenging than ours since both of them are dealing with physical problems.  The current Caregiver (now diagnosed with Parkinson’s) is likely to be needing care as time goes by. The one who has been receiving care is likely to need to become not only more independent but able to help the current Caregiver.

With the diagnosis only months old, it is hard for them to imagine how they will deal with what is to come.  When Mary Ann was diagnosed, we had no idea what we were getting into.  We did not have but a tiny fraction of the information these folks have.  The question wandering around in my head is what would we have done differently had we known what they already know, had we known what we now know.

The answer that first pops into my mind is, nothing, we would have done nothing differently had we known then what we know now.  Even with all the knowledge we have gathered over twenty-two years of listening and reading and learning, we still don’t know what lies ahead!

As we have lived out each day for all these years, we have used common sense based on the information available.  We found our way to a good doctor.  We paid attention and tuned in to the treatments and medications and reasons for them.  We went to the symposia and continued to read and learn.  When we moved we got a home that was fairly handicapped friendly and then increased that accessibility as soon as we could afford to do so.  At each step along the way, we made choices that accepted the most likely progression of the disease, choices that seemed to make sense.

We could not and cannot know what lies ahead.  We can simply create an environment friendly to our situation and trust that we will make good decisions as the days and weeks unfold.  We can only do what we have the knowledge and resources necessary to do them.  That is more than enough to do.  Yes, it means thinking about financial issues so that things are in place to the degree possible.  It means developing contingency plans within reason.  We cannot cover every potentiality.  We simply can’t.  We have had to accept that.  No one can know what lies ahead, nor is it possible to have every base covered.

The good news is that by acting responsibly, doing the best we can with the information and resources available to us as each day goes by, we have the best chance of dealing with whatever contingency may come.  There are no guarantees in life.  I am hardly the first one to come to that conclusion.  It is a truism.  By giving up the illusion that we can anticipate and prepare for every problem the diagnosis will produce in the future, we are free to live the day we are in with some peace and enough energy to deal with whatever that day brings.

The couple tonight had come to that conclusion after working very hard at assessing what the future will bring and preparing for it now. They will clearly make the best of a very difficult situation.

What lies ahead?  We have some clues, but only clues.  We won’t know what actually lies ahead until it happens.  Doing the best today with what we know, dealing responsibly now with what is actually happening, doing what we can today to position ourselves for what seems likely to come is not only a productive way to live, but it gives us the best chance of being able to deal with whatever it is that does lie ahead.

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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